tag:blogger.com,1999:blog-887878599770030722024-03-05T18:56:21.091-06:00Fight The Big FightThis little blog is about the places we never knew love could take us. It's the story of us: an ordinary, movie loving, theme party hosting, cruise vacation taking, do good, mind our own business type of couple...until cancer. Jenny, a social worker turned caregiver, and Wil, an aspiring math educator...until a diagnosis of Acute Lymphoblastic Leukemia. We’re honored you crossed our path to support us as we Fight The Big Fight. Much Love, Jenny and WilBecauseImWilhttp://www.blogger.com/profile/10606536523924927408noreply@blogger.comBlogger129125tag:blogger.com,1999:blog-88787859977003072.post-60059326653230078482020-10-09T19:05:00.002-05:002020-10-09T19:07:16.164-05:00Full Circle<p><span style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt;">Jenny here.</span><span style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt;"> </span><span style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt;"> </span></p><p><span style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt;">Today is Day +2192.</span></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;"><o:p></o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;"><o:p> </o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;">It’s been a long while since I have written an update. Mostly our lives have “normalized” to a steady beat of life post cancer; A life continued through the medical miracle of stem cell transplant. <o:p></o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;"><o:p> </o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;">Side Note (kinda early on in this post, I know): It still is interesting to me when people say, “but he’s ok now, right?” I know what they mean, but that question post any-life-transforming-experience is loaded. They want to hear yes. I want to (and mostly) just say yes. Wil has always been OK. Varying versions of OK. But yes, he’s OK. He has embraced every iteration of OK along the way with a heaping amount of grace. He has learned to live and manage the side effects of survival. You’d never notice most of them—many are invisible. And besides, if you have met him, you know, he is not gonna complain AND his love of life will make you forget anything stood in his way of living the last 2,526 days—days since he was diagnosed. So the short answer—he is managing well. And no resurgence of cancer. I guess I just want to honor the entire experience and normalize that life post-anything is not a version of what it was pre and it won’t ever be—-that takes nothing away from the goodness of seeing another day, it just embraces the duality. We much prefer to let the truth show through and to say that abundance is never a cookie cutter picture. <o:p></o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;"><o:p> </o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;">Honestly, I don’t think I started breathing again, or truly resting, OR regained the ability to look further ahead than I could see, until we reached October 9, 2019—his 5<sup>th</sup> stem cell anniversary last year where we said our goodbyes to his oncology team and stepped out into a what felt like a new and surreal day—never safe from another storm, but having statistically (and spiritually, emotionally, mentally) made it further than we could have hoped.<o:p></o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;"><o:p> </o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;">So today—Day +2193—his 6<sup>th</sup> anniversary (the first that didn’t require extra tests, scans, or biopsies, or even visiting the BMT clinic) feels a bit odd. Especially this week.<o:p></o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;"><o:p> </o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;">Side Note: We were made for COVID y’all—-all that people are trying to do to stay healthy and protect themselves? That was post transplant life for a good year. So all of that, while still a collective grief we certainly share with you all, felt strangely…familiar? Constant fear of infection? Check. Mask wearing everywhere and limiting public outings? Check. Distanced from loved ones? Check. Thankfully we have both been blessed to be home these last 7 months. Wil finishing his Bachelor’s degree in May and working part time on campus at a lab until he was laid off in July. Me working at my full time job, at home, and even taking on a promotion to management in another department, plus while doing telehealth with my private practice clients on the weekends. Every day together, just us and the dogs? Check. Like riding a bike. Only this time around it meant a true partnership—I’ve hung up the caregiver hat. It’s been filled with sorrow over a life none of us imagined—but, we have also enjoyed having what feels like precious borrowed time together. We still try to live like these are bonus days.<o:p></o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;"><o:p> </o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;">This was the first week in a long time that I cried at the bottom of the shower. (Best place to cry and not have puffy eyes all day—that little survivors tip comes at no charge ;)<o:p></o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;"><o:p> </o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;">Why? Monday Wil started his first full time job in 7 years. In his field of choice. Post graduation. And now I am crying just letting that sink in again! 7 years we have either been in treatment, recovering from treatment, or attempting to find new dreams and a build our life back up post treatment. <o:p></o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;"><o:p> </o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;">And of course, thank you Universe, it had to be the week of his stem cell anniversary (already emotional), during a pandemic (for the love of…), and onsite at a hospital (seriously?)—-just to add to the overwhelm. <o:p></o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;"><o:p> </o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;">So after he left Monday, and I started getting ready for my day, the enormity of the moment hit me. This was the full circle moment that seemed unimaginable not that many years ago.<o:p></o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;"><o:p> </o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;">I am cheering. I am scared. I am so many shades of all the emotions. But mostly I am grateful. Beyond that, I am in awe of him (and us) and this life that we really are re-envisioning, despite things we never wanted and void of some hopes we had in the past—-but it’s a life, to quote Mary Berry on the Great British Bake Off, that is “cram jam full of flavor.” Imperfect. But good.<o:p></o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;"><o:p> </o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;">So join us in doing a little social distanced celebration of the fact he is still alive today (do one for yourself today too?). Raise a toast to Wil-the-working-man who continues to show us all a little something about tenacity and faith. <o:p></o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;"><o:p> </o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;">Even with a mask, you can see the joy on his face. <o:p></o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;"><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7rKKeE5w8dzKfFpW1RyeErK2uU69XPxpGpzbta2mlitMG-wlqRiXw47huLcV79rkqFIiza-oyIQ8xVpuu46tjOZd4huwFU6UxHcHsoAqJVcgefykXeHMlDO3JPaZY4Pna0ql78hX60Yoi/s1142/C191F094-E42A-4D25-BB8A-7CDE953EC519.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1142" data-original-width="938" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7rKKeE5w8dzKfFpW1RyeErK2uU69XPxpGpzbta2mlitMG-wlqRiXw47huLcV79rkqFIiza-oyIQ8xVpuu46tjOZd4huwFU6UxHcHsoAqJVcgefykXeHMlDO3JPaZY4Pna0ql78hX60Yoi/s320/C191F094-E42A-4D25-BB8A-7CDE953EC519.jpeg" /></a></div><br /><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;"><span> <span> <span> <span> <span> <span> <span> <span> <span> <span> </span></span></span></span></span></span></span></span></span></span>(selfie walking out of work today—week one done!).</p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;"><br /></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;"><o:p> </o:p></p><p class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in;">Much Love. <o:p></o:p></p>Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com0tag:blogger.com,1999:blog-88787859977003072.post-82399638534652976022019-10-17T22:11:00.001-05:002019-10-17T22:11:39.754-05:00Release<span style="font-family: calibri;">Jenny here.</span><br />
<span style="font-family: calibri;"><br /></span>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">I don’t know her, but I knew her.<span style="margin: 0px;"> </span>I was her, and strangely enough today,
walking back into the oncology building, I was still her.</span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">I won’t bury the lead like some food blogger, recipe 17 page
scrolls down.<span style="margin: 0px;"> </span>This morning, like so many
mornings before, but not many lately, we drove to Dallas--on too little sleep,
empty stomachs due to fasting labs--fueled by my favorite kind of anxiety, the denied.<span style="margin: 0px;"> </span>No digging needed here, so if you are not up
for emotional rambling tonight or if the rest is boring, you don’t have to read
further—today we had our last oncology appointment.<span style="margin: 0px;"> </span>The proof is in the numbers, Wil has been released
from BMT.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcpt8YFKTV73Li9RWggjPUglT_tfQB2d6nH0CzKTIe0zJf7NcbpR6zQ7a1Kn-7fPZl91rhZawv9Ru7f0W-ZZ67Ww0XMyabTfTIdG_gUGI8PatgRFodWKtJlmGyx8i4xj3WnNUO6N-pToVL/s1600/Wil+10.17.2018.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="472" data-original-width="640" height="236" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcpt8YFKTV73Li9RWggjPUglT_tfQB2d6nH0CzKTIe0zJf7NcbpR6zQ7a1Kn-7fPZl91rhZawv9Ru7f0W-ZZ67Ww0XMyabTfTIdG_gUGI8PatgRFodWKtJlmGyx8i4xj3WnNUO6N-pToVL/s320/Wil+10.17.2018.jpeg" width="320" /></a></div>
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;"><br /></span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">All month, and especially this week, insomnia has been my
long lost friend, come to stay.<span style="margin: 0px;"> </span>There
has been work projects and family things to worry about, so my usual story line,
“I’m just really busy,” was in full effect.<span style="margin: 0px;">
</span>Wil is different, but similar, under stress.<span style="margin: 0px;"> </span>We’ve been easily irritated with each other
this week for “no apparent reason” (are you laughing with me yet?).<span style="margin: 0px;"> </span>Which made for a silent car ride through
morning rush hour to UTSW BMT clinic.<span style="margin: 0px;"> </span>Not
necessarily angered with each other, just in our own heads.<span style="margin: 0px;"> </span>Clearly, no stress at all at the Clark house!</span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">Side note:<span style="margin: 0px;"> </span>If you are
an enneagram person, Wil is a 5, I am a 7.<span style="margin: 0px;">
</span>We look very different under stress, but both of us turn inward to our
thoughts and over analyze every detail before we come back out.<span style="margin: 0px;"> </span>We are head first, then heart and body aware.</span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">Pulling up to the building, I am always blown away by the fact
that cancer levels the playing field—every kind of person shows up—all ages,
backgrounds, races, personalities.<span style="margin: 0px;"> </span>It’s
not like a PCP office where yes, many people might have some similar diagnoses,
but it could be super diverse.<span style="margin: 0px;"> </span>At
oncology you KNOW why everyone showed up—to try to live.<span style="margin: 0px;"> </span>And, so, when the couple in front of us got
out of their car at valet, while they looked nothing like us in any way, I
still knew them, at least a little. <span style="margin: 0px;"> </span>As
she asked for a wheelchair for her husband.<span style="margin: 0px;">
</span>While she gently guided him out of the way of another car and explained
slowly.<span style="margin: 0px;"> </span>While he looked alive, but
exhausted and weak, and not quite tracking the conversation.<span style="margin: 0px;"> </span>I saw them, and I kind of wanted to look away.<span style="margin: 0px;"> </span>But I knew them.<span style="margin: 0px;"> </span>We were them in a different life.</span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">In the Universe’s wisdom (or maybe mocking?), by the time we
had made our pitstop in the bathroom, <span style="margin: 0px;"> </span>past the orange Chihuly, past the ambulance
bay that I used to wait at for Wil when he had to be transported from the SNF, past
guest relations where I no longer recognize faces, past radiation, to the bathroom
I have used hundreds of times there, where I have waited outside for Wil, envisioning
he had fallen and bleed out because he was taking a few more minutes this time…into
THAT bathroom, there the wife was again.<span style="margin: 0px;">
</span>Washing her hands.<span style="margin: 0px;"> </span>Tired.<span style="margin: 0px;"> </span>Looking in the mirror.<span style="margin: 0px;"> </span>Saying out loud, what I have said so many
times before, sitting on one of those damn toilets, or crying at the bottom of
my shower:<span style="margin: 0px;"> </span>“You can do this.”</span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">These are moments that feel so private, yet so shared.<span style="margin: 0px;"> </span>I looked into the mirror and smiled her way.<span style="margin: 0px;"> </span>I said, “Me too.<span style="margin: 0px;"> </span>I’ve said that in this bathroom so many times
before.<span style="margin: 0px;"> </span>Just not as often now.”<span style="margin: 0px;"> </span>She smiled back, and genuinely said “that’s
great news.”</span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">We kept passing them at different moments in the
process.<span style="margin: 0px;"> </span>At the blood draw, at the
waiting room.<span style="margin: 0px;"> </span>I listened to her chat
with others.<span style="margin: 0px;"> </span>I used to do that too.<span style="margin: 0px;"> </span>Pass the time with a bag of books, sketchbook,
craft, but often in my weariness just move on to idle chit chat.<span style="margin: 0px;"> </span>It’s different when you know this chapter is
closing though.<span style="margin: 0px;"> </span>This morning I was equal
parts wanting to run, take it all in, to smile, to cry, to just be…I wanted to
see it all and also look away.<span style="margin: 0px;"> </span>Holding
on, holding back, letting go.</span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">The appointment with his oncologist was medically unremarkable.<span style="margin: 0px;"> </span>We caught her up on life.<span style="margin: 0px;"> </span>She reviewed labs that are better than they
have been since transplant, with even some improvement on the kidney
function.<span style="margin: 0px;"> </span>We talked about all the
medical specialists that are still needed ongoing, to deal with this new life
that chemo and treatment has given us—a new body that has pain, needs constant monitoring,
and yes…has given us extra years.<span style="margin: 0px;"> </span>It’s a
mixed bag we fought hard to get and carry.<span style="margin: 0px;">
</span>And grateful that we have this mess to share.</span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">He is still 100% donor DNA.<span style="margin: 0px;">
</span>It is very rare that the leukemia will come back, if cancer comes back
it would most likely be a secondary kind, hence the monitoring.<span style="margin: 0px;"> </span>Transplant wise, GvHD or rejection is no
longer a threat.<span style="margin: 0px;"> </span>Her work with us, and
with BMT…is done.<span style="margin: 0px;"> </span>Released.<span style="margin: 0px;"> </span>Forever on her caseload as an open appointment,
but no set date to see her again.</span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">I hate crying in public.<span style="margin: 0px;">
</span>And I didn’t want to lose my shit there.<span style="margin: 0px;">
</span>I sat silently, eyes filling with tears, Wil said to her that the win
was because of her and me.<span style="margin: 0px;"> </span>We both
shrugged.<span style="margin: 0px;"> </span>I’m not sure either of us
takes compliments without some discomfort. But he looked at her again and said,
“You saved me.”<span style="margin: 0px;"> </span>Those words, it was all
I could do to not ugly cry on cue.</span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">She said to send her a picture as life moves on.<span style="margin: 0px;"> </span>If only she knew, that every picture I have
taken for 6 years—of our lovely, sharp shards of a mosaic life--a piece of that
joy and our love is sent her way, along with all the UTSW faces we have met.<span style="margin: 0px;"> </span>You changed our life.<span style="margin: 0px;"> </span>Not just through your science and skills, but
through compassion, straight talk.<span style="margin: 0px;"> </span>You acknowledged
how close it all came, several times, so I didn’t feel absolutely nuts in my
fear, when I knew family and friends just couldn’t understand it the same.<span style="margin: 0px;"> </span>And you always did with it with resolve to keep
trying.<span style="margin: 0px;"> </span>None of this positive outcome was
for sure, but I was never alone.<span style="margin: 0px;"> </span>Our
love and life, our story, forever entwined.<span style="margin: 0px;">
</span>No thank you will ever do.<span style="margin: 0px;"> </span>And since
I couldn’t say that in person today, without fear of my heart breaking in the
BMT office, I hope you know it all the same, and understand your life has kept
Wil’s life in mine, something I will always carry with me.</span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">Anti-climactic is the best way to describe how I am
processing things tonight.<span style="margin: 0px;"> </span>As we walked
out of clinic, people mentioned how nice it must be to not come back.<span style="margin: 0px;"> </span>But personally, I have been dreading this
moment for over 5 years.<span style="margin: 0px;"> </span>We are over the
moon about Wil’s progress.<span style="margin: 0px;"> </span>We are
adapting to life post treatment with chronic pain, follow ups, metabolic
issues, etc.<span style="margin: 0px;"> </span>We are learning each other
again.<span style="margin: 0px;"> </span>It’s just hard to say goodbye to
the people who changed the course of your life forever, you know?<span style="margin: 0px;"> </span>Even the strangers who you can smile at in
the bathroom mirror and know, without a shadow of doubt, that you’re not in this
world alone, or crazy, or a woman on the edge—without explanation, these people
get you and know what it’s like to just want one more day on this earth with
your person.<span style="margin: 0px;"> </span>And you’ll fight like hell
against anything or anyone that tries to get in your way.</span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">I knew this day would come.<span style="margin: 0px;">
</span>It’s a special kind of grief though, saying goodbye to this space.</span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">We came home and slept today for several hours.<span style="margin: 0px;"> </span>The peace tonight is knowing that we can
release some of our energy back to living (maybe even discovering new paths) AND
that our time on the inside cancer ride was not wasted, as we extend some
energy to others.</span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">See, there will always be faces in mirrors to smile at and
knowing nods to give someone swirling in the middle of emotions.<span style="margin: 0px;"> </span>And they often won’t be strangers, as cancer
doesn’t seem to rest or skip over family and friends.<span style="margin: 0px;"> </span>So, as I cry over the celebratory seafood dinner (one we
couldn’t eat for 2 years through treatment), I promise…I promise, promise, promise, to not forget what it feels
like to only have your nose above the water line, treading water.<span style="margin: 0px;"> </span>And that a simple, non-fixing, but all-knowing
kindness, can release an emotional life jacket to another soul.<span style="margin: 0px;"> </span>I pledge to not look away when there is pain,
but to say, “YES.<span style="margin: 0px;"> </span>Yes, I feel you.”</span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">I know that’s the kind of love that kept me breathing, time
and time again.</span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">Much Love.</span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="font-family: calibri;"></span>Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com0tag:blogger.com,1999:blog-88787859977003072.post-71232569283958719712019-10-09T00:28:00.000-05:002019-10-09T02:55:46.153-05:00Indelible<br />
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 107%;">Jenny here.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 107%;">By the time
I post this, it will be THE day.<span style="mso-spacerun: yes;"> </span>For
now, as I write, I am anxiously counting down the hours until midnight.<span style="mso-spacerun: yes;"> </span>Like so many nights in the last 5 years, I am
trying to be patient and focused, but I am also longing to just see his face
again.<span style="mso-spacerun: yes;"> </span></span><br />
<span style="font-size: 12.0pt; line-height: 107%;"><br /></span>
<span style="font-size: 12.0pt; line-height: 107%;">The days have certainly changed
over the last half decade with him.<span style="mso-spacerun: yes;"> </span>From
long shifts at work followed immediately by long watches at the hospital as he slept, staring at him, my heart racing to the steady beat of the monitors, my whole
goal of each day was just to make it back to him…These days racing home to a
guy, often in front of dual computer monitors, awake, studying away.<span style="mso-spacerun: yes;"> </span>A mere 7 months until he graduates and we
celebrate our 20<sup>th</sup> anniversary.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 107%;">But midnight
tonight marks the 5<sup>th</sup> anniversary of the stem cell transplant that
took; Day +1826.<span style="mso-spacerun: yes;"> </span>Probably day +1800 of
holding my breath (I’ve breathed a few times along the way, but just a few).<span style="mso-spacerun: yes;"> </span>We will have our *hopeful* last oncology
appointment next week, more a formality this year than a major event.<span style="mso-spacerun: yes;"> </span>For us though, this visit will mean hellos
and goodbyes and the end of a crazy chapter.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 107%;">This time of
year I wander through a range of feelings, hearing lyrics from my favorite
Leonard Cohen ballad about broken hallelujah’s, each day getting closer to this date.<span style="mso-spacerun: yes;">
</span>I put my Fight the Big Fight Spotify playlist on and listen, in order,
paying respect to all the emotions.<span style="mso-spacerun: yes;"> </span>Recently,
the word that has been on my heart, on repeat, about where we stand at this
moment --Indelible.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN" style="font-size: 12.0pt; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">As much as I have tried to
wash the marks of sleepless nights, anxiety, grief, loss, and so many other
things away, this isn’t a job that can be accomplished, it’s bone deep.<span style="mso-spacerun: yes;"> </span>Not just in the science marrow kind of way, but in how it’s forever created a new Wil.<span style="mso-spacerun: yes;"> </span>A
new Jenny.<span style="mso-spacerun: yes;"> </span>And a new marriage.<span style="mso-spacerun: yes;"> </span>A new life that is barely recognizable at
times. A life I both cherish and admonish, sometimes during the same day.<span style="mso-spacerun: yes;"> Standing on this side of things, I have started to wear these indelible marks with pride, with admiration, and as the true sign of all my human-ness in this life. It's powerful Humbling. But I would still categorize my relationship to this cancer thing as #complicated.</span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN" style="font-size: 12.0pt; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">You all have watched the
cancer specific changes.<span style="mso-spacerun: yes;"> </span>Cried when he
was kept alive by blood transfusions.<span style="mso-spacerun: yes;">
</span>Prayed he would not end up with an infection when he had no bodily
defenses.<span style="mso-spacerun: yes;"> </span>Supported.<span style="mso-spacerun: yes;"> </span>Yelled Fuck Cancer. Sent legos.<span style="mso-spacerun: yes;"> </span>It’s unfortunate that the more treacherous
part of the healing was post hospital and post clinic days when life quieted
for him, and opened up a new world of sorrow for me to wade through alone, when I
could no longer write about the feelings that didn’t match the victory march I
felt pressured to lead.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN" style="font-size: 12.0pt; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">The last few years have truly
been difficult in so many ways, so deeply personal that I sheltered them away from
most people.<span style="mso-spacerun: yes;"> </span>Yet, this period, would be the
most helpful to others on a similar path; The uncharted aftermath seems to be
the forgotten part of the stories I hear in general.<span style="mso-spacerun: yes;"> </span>Even though it’s those miles that tell the
tale of how someone makes it out of the canyon, against impossible inclines, we barely hear the echo of
their existence, satisfied to see them at the top eventually.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN" style="font-size: 12.0pt; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">2018 ended with us wondering
what we were even doing anymore, not so much individually, but together.<span style="mso-spacerun: yes;"> </span>While our commitment had never changed, some
of the reasons for staying together had faded through patient/caregiver roles and
trying to move back to a partnership.<span style="mso-spacerun: yes;">
</span>Attempting to find ourselves, getting so lost along the unknown trail,
we couldn’t quite envision goals and dreams together anymore.<span style="mso-spacerun: yes;"> </span>We started having the hard conversation that
if we couldn’t figure it out, we had no idea if forever meant together.<span style="mso-spacerun: yes;"> </span>We were a strong team going into cancer, we
slayed treatment and every complication, but when the dust started to settle,
we realized it was no longer about getting back to our life…we had to build an
entirely new existence and we knew each other so deeply, so raw, we didn’t even know how
to make the new life work with all the new found vulnerability.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<span lang="EN" style="font-size: 12.0pt; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><span style="mso-spacerun: yes;"><br /></span></span>
<span lang="EN" style="font-size: 12.0pt; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><span style="mso-spacerun: yes;">Side note: I joke that you don't really know your spouse until you've helped them with an enema. There is so little mystery left after major medical issues. Somehow you still need a little magic to keep things going. </span></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN" style="font-size: 12.0pt; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">2019 started out with us deciding
to focus on ourselves while we also re-entered courtship with each other.<span style="mso-spacerun: yes;"> </span>I fed my soul on a steady diet of concerts
and trips, of loud music in the car and kitchen, dancing in the living
room.<span style="mso-spacerun: yes;"> </span>Wil focused on school and his new
part time job.<span style="mso-spacerun: yes;"> </span>We started to find the
bottoms of our souls again and worked to fill them up.<span style="mso-spacerun: yes;"> </span>We ate lots of tacos with friends.<span style="mso-spacerun: yes;"> </span>Moved to a new space.<span style="mso-spacerun: yes;"> </span>Started taking guitar lessons.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN" style="font-size: 12.0pt; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">At some point we got our
groove back.<span style="mso-spacerun: yes;"> </span>And I know I am speaking
for only me in this post, but I think we fell in love with each other again too.<span style="mso-spacerun: yes;"> </span>And finally started figuring out this life
3.0.<span style="mso-spacerun: yes;"> </span>Past treatment.<span style="mso-spacerun: yes;"> </span>Past the canyon of doubt after
treatment.<span style="mso-spacerun: yes;"> </span>Past looking at each other
like strangers. To the very north rim, the less traveled but, more beautiful overlook.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN" style="font-size: 12.0pt; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">Side note:<span style="mso-spacerun: yes;"> </span>I don’t think we ever stopped loving each
other, but love and being love and being in love are 3 different states of
being to me.<span style="mso-spacerun: yes;"> </span>The trifecta?<span style="mso-spacerun: yes;"> </span>Damn near impossible with most people, but it’s
what I feel when I am with him now. <span style="mso-spacerun: yes;"> </span>And
how I am starting to fall in love with life again too.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN" style="font-size: 12.0pt; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">So tonight, it seems only
appropriate that we enter into the last day of Yom Kippur, Day of Atonement, and
holiest day of the year in Judaism.<span style="mso-spacerun: yes;"> </span>While
we do not observe ourselves, the lessons of these holy days from my time
working at a Jewish school are still etched in my mind.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>A day
where there is fasting, introspection, prayer, rest--followed by celebration,
shouting, and dance.<span style="mso-spacerun: yes;"> </span>Through the solemnness
of observance there is the “undercurrent of joy; it is the joy of being
immersed in the spirituality of the day and expresses confidence that G‑d will
accept our repentance, forgive our sins, and seal our verdict for a year of
life, health and happiness.” (<a href="http://www.chabad.org/">www.chabad.org</a>).<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN" style="font-size: 12.0pt; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">Cognitively, I have understood
this before.<span style="mso-spacerun: yes;"> </span>This year, I feel its
message at my core. Tomorrow we will rest.<span style="mso-spacerun: yes;">
</span>Reflect.<span style="mso-spacerun: yes;"> </span>Love.<span style="mso-spacerun: yes;"> </span>And shout about all the marks we will continue to carry with us.<span style="mso-spacerun: yes;"> </span></span><br />
<span lang="EN" style="font-size: 12.0pt; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><br /></span>
<span lang="EN" style="font-size: 12.0pt; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">Year 5. Time hasn't flown, but it's still hard to believe. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN" style="font-size: 12.0pt; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">There are no guarantees about
anything.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>There never were, and never will be.<span style="mso-spacerun: yes;"> </span>But I can’t wait to leave this desk so I can
see his face…again…for as long as I can. Apparently, our love, his face, both indelible too.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN" style="font-size: 12.0pt; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">Much love.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN" style="font-size: 12.0pt; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">(And if you are one of the few
who have followed all along, even into the canyon, a special thank you for your
healing, all seeing, love).<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 14.4pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN" style="color: #767676; display: none; font-size: 12.0pt;"><a href="https://www.bing.com/search?q=define+unforgettable"><span style="color: #001ba0; text-decoration: none;">unforgettable</span></a>
· <a href="https://www.bing.com/search?q=define+haunting"><span style="color: #001ba0; text-decoration: none;">haunting</span></a>
· <a href="https://www.bing.com/search?q=define+memorable"><span style="color: #001ba0; text-decoration: none;">memorable</span></a>
· not/never to be forgotten<b>antonyms:</b></span><span lang="EN" style="font-size: 12.0pt; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span lang="EN" style="color: #767676; display: none; font-size: 12.0pt;"><a href="https://www.bing.com/search?q=define+erasable"><span style="color: #001ba0; text-decoration: none;">erasable</span></a><o:p></o:p></span></div>
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<br /></div>
<br />Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com1tag:blogger.com,1999:blog-88787859977003072.post-3789456924586230722019-05-05T04:26:00.003-05:002019-05-05T05:01:00.209-05:00Plans<div class="MsoNormal">
Jenny here.<o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
Despite my life always reminding me that plans are actually
more so meant to be broken than followed I, too, get caught up in making them,
and find myself in equal amounts of surprise as heartbreak. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
2019 has not been unique.
It has been another year of searching and only sometimes finding. We are working on some things, but finding as
many roadblocks, or at least detours, as nicely paved road. I know I keep saying it, but the truth is,
post cancer life is just plain hard in all the edges we bump up against. There are always more tests, more bills, more
reminders that the life we had planned, the life we keep trying to re-plan, is
not our own or promised. Perhaps some
other time, I will get into all that in greater depth—this process of
constantly unbecoming. I know I am not
alone. We can all find ourselves at this
same place, cancer just ups the intensity and speed. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
For now, life is a lot of the same on paper, Wil is still working
on school and dealing with his chronic pain with grace. He is working part-time at the campus, and
while it has been a big transition adding that to life (and tiring), he is a
happier person because of it. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am working too much, yet not enough to keep up with all we
would like to accomplish. Yet, I am
making some time for things that fill me, continuing work on my EMDR
certification, seeing Pitbull as often as possible in concert, eating tacos,
and cuddling with our dogs.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We’ve moved in the last week, rather unexpectedly, to a new
place in our same zip code, but out of an apartment and into a 4-plex that
feels more like home (same square footage but larger kitchen and
bathroom). The dogs now have a yard and
more windows. Tyson’s health is being watched
closely right now, which I cannot quite wrap my head around as he is my true partner
in crime around here…the dog that saw me through losing Bella, through months
upon months of coming home without Wil, late nights, tears, and mutual graying
hair over it all. So the move, may be me
partially trying to give T-bone the peace he needs and deserves as he hopefully
ages a few more years. Because, you
know, I have planned for him to be around another 5 years (if not
forever). PLANS.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Five years y’all.<br />
<br />
Five
years of life being the most brilliant and heart wrenching time of our
lives. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
Five years ago, between chemo-cation inpatient stays at
UTSW, we did a bucket list thing—we took bluebonnet photos. Honestly, not knowing if we would ever take
them again. A month later our chihuahua
Bella died. And since, my only regret of
those photos were not having the dogs there with us. Every year since we have made our way to Ennis,
TX to enjoy an afternoon in the sun, surrounded by a sea of purples, blues, and
orange. Snapping a few pictures of our
time with the pups. It is my favorite
time in Texas, not only because of the beautiful wildflowers, but because of
the triumph of somehow delaying death another year. Wil plans to live a long time. My heart lets me move in shorter spans of
time than him, but it lets me look ahead now.<o:p></o:p><br />
<br />
Side note: Looking ahead is both harrowing and hopeful. The two states overlap, almost always.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So we did a thing. We set a date with a photographer, Stolen
Moose, harnessed up all three dogs last Saturday, and we drove to Ennis, TX. The only plan, to document year 5 of somehow
surviving. Of continually learning how
to love each other (over and over and over again) through all the twists and turns. We are not the same people we were 6 years
ago, so clearly we are not the same partnership either. And yet? We keep choosing each other. Keep struggling together. Laughing together. Fighting. Resting in each other's company. Despite all the plans that haven’t come to
be, and may never be. We keep choosing
to dust ourselves off and push forward (perhaps after some margaritas and
tacos, sob fests, or general periods of retreat, apathy, and agony). <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And in the moments I am pretty certain I can’t go on? The universe finds me a song to hold on to
until I can again. And I take out photos
like these, and realize I am, somehow, living some terrific moments, even if they
are mostly, or almost completely, not in my plan at all.<br />
<br />
Walking into, not away from...<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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Much Love.<o:p></o:p><br />
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<u><b>"Let Go of Your Plans" by Lukas Nelson & Promise of the Real</b></u><o:p></o:p></div>
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/pm2jp_17wgA/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/pm2jp_17wgA?feature=player_embedded" width="320"></iframe></div>
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<span style="color: black; font-family: "verdana" , sans-serif; font-size: 10.0pt; line-height: 107%;">I ain't really trying to force anything</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">I ain't really trying to force your love on me</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">If you want to be a friend to me</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Don't be afraid of telling me what you thinking</span><br />
<br style="-webkit-text-stroke-width: 0px; box-sizing: border-box; orphans: 2; word-spacing: 0px;" />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Cause if you think you wanna live with me</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Lie with me, and float down the river of life</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Don't ask me to swim upstream</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">I already tried and I nearly died</span><br />
<br style="-webkit-text-stroke-width: 0px; box-sizing: border-box; orphans: 2; word-spacing: 0px;" />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Don't be afraid of change</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Everybody's gotta let go of something</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Don't be afraid of change</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Take my hand</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Let go of your plans</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Let go of your plans</span><br />
<br style="-webkit-text-stroke-width: 0px; box-sizing: border-box; orphans: 2; word-spacing: 0px;" />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Sing a song along the hill country river</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Keep you warm when you start to shiver</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Simple things I'm gonna do for you</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">I don't think twice to do it cause I want to</span><br />
<br style="-webkit-text-stroke-width: 0px; box-sizing: border-box; orphans: 2; word-spacing: 0px;" />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">And if you think you wanna ride with me</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Jump on a horse and outrun the future</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Well then you better learn to love the wind</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">And keep your hat when it changes direction</span><br />
<br style="-webkit-text-stroke-width: 0px; box-sizing: border-box; orphans: 2; word-spacing: 0px;" />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Don't be afraid of change</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Everybody's gotta let go of something</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Don't be afraid of change</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Take my hand</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Let go of your plans</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Let go of your plans</span><br />
<br style="-webkit-text-stroke-width: 0px; box-sizing: border-box; orphans: 2; word-spacing: 0px;" />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Don't be afraid of change</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Everybody's gotta let go of something</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Don't be afraid of change</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Take my hand</span><br />
<span style="-webkit-text-stroke-width: 0px; float: none; orphans: 2; word-spacing: 0px;">Let go of your plans</span><br />
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Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com0tag:blogger.com,1999:blog-88787859977003072.post-16079286090437993772018-11-24T11:31:00.001-06:002018-11-24T12:41:13.679-06:00 Cry<div style="font-family: "helvetica"; font-size: 12px; font-stretch: normal; line-height: normal; margin: 0px;">
<span style="font-size: 12pt;">Day +1507: </span></div>
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<span style="font-size: 12pt;">It’s often hard to adequately describe what November’s are like for me since his diagnosis. I spent that first Thanksgiving by his side at UTSW, also my birthday that year, while we watched via FB our family road trip to MN for a family gathering. It was really hard. On so many levels. </span></div>
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<span style="font-size: 12pt;">Yet the years since almost grow in emotion for me, both ends of the spectrum. I long for simple, quiet, lovely. But the whole month of November is just a lot of hard memories and it’s gone from my absolute favorite month of the year, to my least. Both from the first admit and diagnosis to the first month home after transplant the next year, I have lost my love of this time of year., replaced with resolve to just make it through.</span></div>
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<span style="font-size: small;">Side note: Your brain holds on to negative experiences more. We've had some greatness during November as well, but by brain likes to get overloaded with the tough stuff.</span> </div>
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<span style="font-size: 12pt;">Last week, in doing some cleaning, I came upon a box of cards from 5 years ago. It was so bittersweet. And clearly a reason why cleaning is a bad move! I sat there, reading each one. A box I had kept stored away for all this time. </span></div>
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<span style="font-size: 12pt;">And the tears flowed and flowed and have kept coming all week. </span></div>
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<span style="font-size: 12pt;">I really meant to thank people more, clearly, since I also found dozens of blank thank you notes alongside all your cards. So, please know those cards still mean a lot to our experience and healing and I had very good intentions. </span></div>
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<img alt="" id="id_6763_3fb0_453_6a3" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigRymNbjm8V_e-zVYxweERPN0q9cQmLt8NyKCPNjxpcrmPJozsqeO2YQyftXdIEmthEVm_YHn9GP1Z_qvSJUseTqwKth_r3C6eDdL0r0IX5BPiiDUhyzsO1J5wcvCYBnLrfZbQQflLQFou/s5000/%255BUNSET%255D" style="height: auto; width: 392px;" title="" tooltip="" /><br /><br /><span style="font-size: 12pt;"><br /></span></div>
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<span style="font-size: 12pt;">There are so many articles written about the patient. How cancer effects don’t stop past remission and how the emotional toll is still carried. And I worry so much about this for Wil...all the freaking time...that the ongoing toll for this post-caregiving wife, sneaks up on me during these anniversary months. I’m very good at “keep on keeping on” days. But this week of Thanksgiving I realized what a toll that takes on a marriage when you don’t let your partner take up the slack. And when you don’t let yourself sit in the feelings. </span></div>
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<span style="font-size: 12pt;">To be honest, our marriage is not perfect and cancer has taken a toll, especially lately. We are no more a poster couple than anyone else. And we, like I’m assuming by the stats, aren’t alone. Illness makes relationships more stressful. Why aren’t most people talking about it? It’s just one more painful thing to be vulnerable about (and be judged by) when the rest of your tribe wants to see that you are perfectly well and stable. And happy. It's a bummer, but I really value honesty, so I am trying to be more transparent here while still being respectful to everyone else. </span></div>
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<span style="font-size: 12pt;">Side note: Our love is not smoke and mirrors. It’s real. It’s just that our mutual pain and unshared experiences make healing feel like an unchoreographed cirque du soleil show on speed (let’s face it, our journeys are so different. And not in sync on hardly any front, ever!); We are two imperfect people struggling along at the same time in very different directions and speeds. The pressure to appear OK and “blessed” at all times is overbearing if you don’t monitor it closely. I preach it y'all but I still fall victim to it. Blessed is not pain free. Pain is useful if handled with care and attention. </span></div>
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<span style="font-size: 12pt;">So, other than my near perfect dogs I’m obsessed with, that’s what I’m most thankful for right now. The big shifts of emotions and pain. Pain? Yes. Pain that I couldn’t sit with before because we were busy surviving. New life comes through pain. Growth comes with pain. So I’m sitting this month and maybe next month. Maybe the next year. I’ve told my pain I’m here and I’m not leaving until all the books and crannies are heard and loved. I’m crying again which I haven’t been able to do in quite some time. I’m evaluating. I’m trying to lay down the struggle and just let it flow. Figuring out who I am in this life post-caregiving. According to society I should celebrate getting fired from that gig. Right? I’m here to tell you it’s still a loss. Especially since you’re not transported back to life pre-cancer once the caregiving ends. Especially since you mostly just feel lost and alone in the experience of caregiving to begin with...and apparently end with...</span></div>
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<br /><img alt="" id="id_d0cb_f858_9601_8c62" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR98Mwv5BJoZfTgqrxCytap7pTuUAcqW-WkwtH37AuaiWtXIieY90XyeZDFZl0h6pHFjQl6Bdwv5CMjMqy6OYw2O9f0lXhjsKccLLvYkD3BP86rAnERG1JlveLIm_uUs3uswmJbc2arYsz/s5000/%255BUNSET%255D" style="height: auto; width: 392px;" title="" tooltip="" /><br /><br /><span style="font-size: 12pt;"><br /></span></div>
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<span style="font-size: 12pt;">I know it doesn’t make sense to everyone. Wil has said it doesn’t even make sense to him. And he’s pretty good about trying to get it. I know it may not be apparent to just anyone. Until this week it was only partially apparent to me. And life is a mix always...I’m just a mere human making my way through this next segment like so many others, I’m sure. Maybe it’s my upcoming birthday. Maybe it’s the anniversaries. Maybe it’s the drama that I’m too exhausted to fight with anymore. But I’m feeling ready to just be actively broken and not try to pretty it up for anyone. Maybe even say “I need to be taken care of too?” </span></div>
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<span style="font-size: 12pt;">Perhaps this whole past year I’ve been gearing up to the this holiday week breakdown where I finally just metaphorically lay myself on the ground in fetal position and be swallowed up in post-grief-grief (I just made that up. But it’s certainly a new level of grief to wade through, past the cancer stuff). It’s the only way I think I’ll be able to get through to the next layer of life. I’m keeping faith that I’ll salvage real relationships with the people who get it, including Wil. </span></div>
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<span style="font-size: 12pt;">November has had enough drama for me for a lifetime and this week really cemented by resolve to stop carrying all the perceived failures. Mistakes? I’ve got plenty. I just don’t need to fix anyone else’s or beg to be loved by doing or being anything I’m not. </span></div>
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<span style="font-size: 12pt;">Let this be the year for some cleansing. And maybe, some more writing. </span></div>
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<span style="font-size: 12pt;">Much ❤️</span></div>
Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com1tag:blogger.com,1999:blog-88787859977003072.post-69430143364463170252018-10-04T21:44:00.002-05:002018-10-04T21:44:47.547-05:00Full<span style="font-family: calibri;">Jenny here.</span><br />
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<span style="font-family: calibri;">It’s been awhile since I sat at my desk and cried about
Wil.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">Yet, here I am today, doing just
that, for the overwhelming culmination of events…although it’s been quite some
time, I still get caught up in emotions some days more than others.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">My work cube seems to be the place to cry.</span><br />
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<span style="font-family: calibri;">Today we are in the midst of packing for a little weekend
trip to Tulsa to meet up with some family, and I am so excited for it.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">Emotions are already high for me because of
it and I cannot wait to spend some quality time with sisters and
nieces/nephew.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">This has been a year of
leaning into not having our own kids, through adopting another dog, and
cherishing the time with extended family, especially the little ones, in lieu
of our own best laid pre-cancer plans.</span><span style="font-family: calibri;">
</span><span style="font-family: calibri;">It’s been good though.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">Wil is
tutoring a niece, taking nephews to movies, teaching another niece to drive,
helping his mom out.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">These are the
sweetest moments for him.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">He’s exhausted
by the time he gets home on those days, but filled to the brim with something
no words can capture.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">Something better
seen and felt…but it’s there and he’s full.</span><span style="font-family: calibri;">
</span><span style="font-family: calibri;">There’s never a pain free day for him, but he’s killing it at school and
with family time.</span><br />
<span style="font-family: calibri;"><br /></span>
<span style="font-family: calibri;">You see, it’s Day +1456.</span><span style="font-family: calibri;">
</span><span style="font-family: calibri;">And it’s probably been a week since I looked at the day count.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">It’s always running in the back of my mind,
but not in the forefront anymore.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">I’m wearing
lipstick these days.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">I quit Diet Coke. I’m
breathing.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">Stretching.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">These are the things that don’t make the most
dramatic of blog entries.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">These are the
bricks of rebuilding a person though.</span><span style="font-family: calibri;">
</span><span style="font-family: calibri;">One by one.</span><br />
<span style="font-family: calibri;"><br /></span>
<span style="font-family: calibri;">Side note:</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">And this
might be TMI, so fast forward if you’d like.</span><span style="font-family: calibri;">
</span><span style="font-family: calibri;">There was a time, more than 1,456 days ago, that I was so in the throes
of cancer treatment with him that I had damaged my toe and not even realized it
(the pain OR the fact that the nail had turned black) until the nail fell
off.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">Yes, so unaware, so numb
emotionally AND physically, that I was that out of sync with my own pain.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">I had plenty of pain, but my pain was all
focused on the task at hand…either helping him survive, or prepping to grieve
him if he didn’t.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">Through this duality,
nothing else mattered or was even noticed. </span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">To ask someone to take care of themselves
during a time like that is the most common phrase you hear as a caregiver.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">It’s a good idea.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">But how do you take care of yourself when you
can’t even locate your own pain or be present with your own body?</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">I am still working on this area.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">I am still trying to be more in my own body
these days.</span><br />
<span style="font-family: calibri;"><br /></span>
<span style="font-family: calibri;">Next week Tuesday, October 9, 2018, Day +1461, Wil will
celebrate his 4</span><sup style="font-family: calibri;"><span style="font-size: x-small;">th</span></sup><span style="font-family: calibri;"> anniversary of the second stem cell
transplant.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">While we won’t meet with his
oncology team for this year’s testing results until the next week, we will still
raise a glass to the day, eat some shrimp, take a nap, and breathe in this
milestone (and I promise to update you all on the results).</span><br />
<span style="font-family: calibri;"><br /></span>
<span style="font-family: calibri;">But y ’all.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">It’s also
likely the first day of work for Wil in over 5 years.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">Now, he has been assisting me with projects
at my private projects along the way (maintaining the networking and website),
but I am talking, PAID, not family business work.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">This week Wil accepted a part-time position
with the community college computer lab where he will assist students.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">It’s the perfect thing.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">No benefits, so he can stay on my sweet
health insurance through my work, and not full-time, so he can continue
classes.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">And a first job related to his
new field.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">Finally, something to start
filling that resume, plus some extra bucks to attack that credit card used
during treatment.</span><span style="font-family: calibri;"> </span><br />
<span style="font-family: calibri;"><br /></span>
<span style="font-family: calibri;">This brings me back to now.</span><span style="font-family: calibri;">
</span><span style="font-family: calibri;">Sitting in my cube, tears in eyes.</span><span style="font-family: calibri;">
</span><span style="font-family: calibri;">The mascara might take a hit tonight as I let the intersection of events
next week soak in, but the lipstick?</span><span style="font-family: calibri;">
</span><span style="font-family: calibri;">Fully on, as a symbol of much more, as we step into the next chapter of
our Life 2.0.</span><br />
<span style="font-family: calibri;"><br /></span>
<span style="font-family: calibri;">Much Love.</span><br />
<br />Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com1tag:blogger.com,1999:blog-88787859977003072.post-69772846529553586422018-06-23T00:04:00.002-05:002018-06-23T00:17:16.260-05:00Nothing But Blue Sky
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Jenny here.<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Day +1353:<span style="mso-spacerun: yes;"> </span>I know, it’s
been too long.<span style="mso-spacerun: yes;"> </span>Today though, is just a
quick, in the moment update.</span></div>
<img id="id_128d_4cfa_3dcc_f26f" src="https://lh3.googleusercontent.com/-BD5ofH7aYDk/Wy3WYFccgjI/AAAAAAABWs4/JXrqHOSsobg5Q56lLDF4cpE-2NlfzjFBACHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br><br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">I am a day dreamer by nature.<span style="mso-spacerun: yes;"> </span>As a kid I would lay on the grass in the
summer and watch the clouds.<span style="mso-spacerun: yes;"> </span>Still today,
if I have an extra hour at my office, I might lay on the couch and look out the
window.<span style="mso-spacerun: yes;"> </span>I also have a view from my 8<sup><span style="font-size: x-small;">th</span></sup>
floor desk at my cube job.<span style="mso-spacerun: yes;"> </span>It just
brings me peace to look out at the expansive sky and wonder. <span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">I need alone time to think, even though I am an extrovert,
and time to process.<span style="mso-spacerun: yes;"> </span>I am an overanalyze
and research forever…but even so, I have a strong internal compass and when I
decide to do something, and I feel it’s right, I don’t hesitate to act.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Lately we have just been feeling so connected to life and
overwhelmed, in the good ways that are full of love and light.<span style="mso-spacerun: yes;"> </span>We have been quietly moving along in healing.<span style="mso-spacerun: yes;"> </span>Some days easier than others.<span style="mso-spacerun: yes;"> </span>Cancer made any thoughts of fertility a
scientific experiment, with no guarantees, extreme expenses, and with the
anxiety of cancer coming back… a major hesitation.<span style="mso-spacerun: yes;"> </span>So our ideas of family life have started to
shift to what family life is in the now versus what we thought it would
be.<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">There is a lot of grief and heavy lifting in moving your
dreams along towards change.<span style="mso-spacerun: yes;"> </span>It feels
more like pushing a 5 ton rock up a gravel road than some sort of
transformative, spiritual experience of lightness.<span style="mso-spacerun: yes;"> </span>It’s tiring and lonely.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">During cancer, a quote I kept at my desk was, “Bak skyene er
himmelen alltid bla,” a Norwegian sentiment that translates to “behind the
clouds there is always blue sky.”<span style="mso-spacerun: yes;"> </span>I have
hung on to that simple statement.<span style="mso-spacerun: yes;"> </span>The
blue is there, it will appear in time.<span style="mso-spacerun: yes;">
</span>Even when you are tired and lonely, just hold on.<span style="mso-spacerun: yes;"> </span></span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">And this week it did, on Father’s Day, in the form of fur.<span style="mso-spacerun: yes;"> </span></span></div><div style="margin: 0in 0in 10pt;"><img id="id_fa08_1da9_dd06_ca1f" src="https://lh3.googleusercontent.com/-cSaklak0tmA/Wy3We7VuL1I/AAAAAAABWtI/k5kulxkMthseX4HiThepqdRfVC8HmaCzwCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br><img id="id_746d_71d3_ca5b_4257" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhN5sppwU7ub9wka6lkthiW-BRkR50eahudLOzG561ZMCWaF9oeinntli8oG1_06MuEt03O0J9MQE2dB_8R_UqgQai5CNTPUy7-yB9ks7cPOE9kcdE2GBR4dJlM6QgEIaS5HKE6r1P9u5tz/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br><img id="id_f367_721e_6dd8_da60" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiO7bgOqt-06LA7yjef1NeJ6RABgB7PwkAfiwp44HhD_fIBKvBFD1ZnAMnuCsBbP6ga9h28JS1J3TPyjBx-AMD6-Sw9yL5RCnn5WMnaDITKr-QPaQVJUM17lZ3Ke7Y7KlDi0TXFqUAX4rk/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br><img id="id_6309_bf2b_c6e1_6c4c" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiID1Rf7GZCRCUZSShPHsksB-lWFxyfedlsyCAfcAFxKNPS54QwbQfk3iwj8c86lgdf-ns_B7xYaINwuujz2uCqCav7KM5coxbaaMKe2JW4KKclKP2dxoqYDfoG4NxOsosu5Ig0sqNEWuOs/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br><span style="font-family: Calibri;"><span style="mso-spacerun: yes;"><br></span></span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">We would like to introduce to you all, KYLO.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"> </span></div><img id="id_30a_957e_c6e0_8487" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlZ6qKFaxz2uXviVvbirAlQI6Va_uZFXX2FdSPHYsGYT9pHV1nwxHoEp5zxG-Q-uBV-YrxA-tSqgOCwre-HTFvRjp_c2jAJSH7FVJFoQ0cFpFoPlfJ5KDGwy3db956rVgjrPDh9ayHnS1x/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Side note:<span style="mso-spacerun: yes;"> </span>Yes, yes,
THAT Kylo, as in a reference to Star Wars.<span style="mso-spacerun: yes;">
</span>But not because he is bad.<span style="mso-spacerun: yes;"> </span>In
fact he’s pure sweetness.<span style="mso-spacerun: yes;"> </span>Our first date
was to Episode One, so you know, for life our marriage is connected to Star
Wars.<span style="mso-spacerun: yes;"> </span>But hang with me for a minute…Don’t
you think if Kylo Ren had had the chance to have a secure attachment to his
mother and father and not be shipped off, he may have built healthier
relationships, been able to feel more compassion, and cope with difficult feelings
in less deadly ways?<span style="mso-spacerun: yes;"> </span>Our little Kylo was
dumped off at the Dallas Shelter (a kill shelter), ears full of ticks.<span style="mso-spacerun: yes;"> </span>He was so distressed they put him up front by
reception where they jokingly said he was a cry baby.<span style="mso-spacerun: yes;"> </span>All the other dogs we had looked at were not available.<span style="mso-spacerun: yes;"> </span>Then there he was!<span style="mso-spacerun: yes;"> </span>Crying, just wanting to be held.<span style="mso-spacerun: yes;"> </span>I am hopeful with the right attachment,
security, and attention from us, our little Kylo will avoid the dark side…Folks,
this is what happens when you take a social worker to a Sci-Fi movie!<span style="mso-spacerun: yes;"> </span>My questions/comments are NEVER the same kind
of questions Wil has after watching films!<span style="mso-spacerun: yes;">
</span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"> </span></div><img id="id_a799_4cde_9caa_8936" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmm11bvx9US6gX6q5vOPy7NZ9w_FSFsvDCTkZM1RAtY0Bp7S5XxUu4TnKPdL7vc8mcYjkoPMpGrY7SxXl-xUkNPunqi2-dV1agxPcL_bhIMv3tPiFcu7coR4BxfAOCwoex-1beWHnDxTQi/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br><img id="id_7827_98fc_7ee6_2e8e" src="https://lh3.googleusercontent.com/-GOa3whBUXS0/Wy3Wfu4dhUI/AAAAAAABWtQ/IMjuKXcrE7ofqbngxJ3uw6eqnCSSpkCYQCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">In Latin, caelo (Kylo) is also the dative form of the word caelum,
meaning sky.<span style="mso-spacerun: yes;"> </span>He is in fact, not the baby
we thought we would have, but he is a little one who needs care and a home, and
our hearts are pretty happy right now having him around. <span style="mso-spacerun: yes;"> </span>He’s our blue sky, behind all the clouds.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"> </span></div><img id="id_85ca_a80e_8008_aa34" src="https://lh3.googleusercontent.com/-ADZBALoChPM/Wy3WkUzesbI/AAAAAAABWtc/Ns9-33gbiFU7n2837DF0udl7e05LDz9_ACHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br><img id="id_492a_5898_519c_c3e3" src="https://lh3.googleusercontent.com/-_2EEuCW6Jr0/Wy3WirIAemI/AAAAAAABWtU/vKWecAKNu4EjunPHfpAEwo6JXUpJO5ZIgCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">So far we are settling in and getting used to each
other.<span style="mso-spacerun: yes;"> </span>I am certain the love will grow
from the tolerance we now share, just a few days into this adventure. <span style="mso-spacerun: yes;"> </span>Wil is enjoying, for the first time ever,
being the point person for dog training and house breaking since he’s home all
the time.<span style="mso-spacerun: yes;"> </span>He’s so happy.<span style="mso-spacerun: yes;"> </span>For real.<span style="mso-spacerun: yes;"> </span>(Just wait for all the pics and videos!)</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"> </span></div><img id="id_e0e8_5c91_685f_7809" src="https://lh3.googleusercontent.com/-HoPXJC6FCLg/Wy3WjCmZGiI/AAAAAAABWtY/_CkeWpp7mLU2Ve6ZRIrtW47Mwbk97A7UgCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Kylo is not what we went looking for and, other than being a
Chihuahua mix, didn’t really check off any boxes we had going in…but he’s just good
enough, in the right ways.<span style="mso-spacerun: yes;"> </span>And we are just
good enough in the ways he needs.<span style="mso-spacerun: yes;"> </span>And
when a family of good enough comes together?<span style="mso-spacerun: yes;">
</span>Even from the brokenness, that’s where REAL magic can grow. </span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Much Love.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"> </span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"> </span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"> </span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"> </span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"> </span></div>
Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com0tag:blogger.com,1999:blog-88787859977003072.post-62467996170951202502018-01-31T00:07:00.000-06:002018-01-31T00:11:32.334-06:00Let It Break
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Jenny here.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">The number 26 is the May date of our anniversary.<span style="mso-spacerun: yes;"> </span>It’s also my favorite Paramore song, ever.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">I feel as though I have all but abandoned this dear blog
that has meant so much to me and Wil and journaled our walk through cancer
land.<span style="mso-spacerun: yes;"> </span>There is no sense trying to
capture all that has gone on since I last wrote in June 2017, but I will
include some pictures of events and happenings at the end of this entry.<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Gosh, I don’t know how many other cancer blogs I have read throughout
the past few years that, many times, just end.<span style="mso-spacerun: yes;"> </span>No caption.<span style="mso-spacerun: yes;">
</span>No note to say if the person lived or died.<span style="mso-spacerun: yes;"> </span>There just comes a last entry, that maybe wasn't intended to be the finale, with nothing
more after.<span style="mso-spacerun: yes;"> </span>It leaves you to wonder, and that’s
not what I want to do here.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Life 2.0 is moving right along for us, with all the ups and downs of regular life.<span style="mso-spacerun: yes;"> </span>Somewhere during 2017, I think we turned a
corner and started to define our 2.0 life together.<span style="mso-spacerun: yes;"> Another layer to this thing.</span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">I once attended training where the presenter said that the
last stage of grief, acceptance, was more than one layer.<span style="mso-spacerun: yes;"> </span>There was seeing acceptance, knowing life is what it is, which
could still include anger and fear…a few levels in between I can't recall...and then down the acceptance line,
there was a resting place of acceptance.<span style="mso-spacerun: yes;"> </span>Those statements
have meant a lot to me in my work with clients.<span style="mso-spacerun: yes;">
</span>You can still be making progress, still be working through and into acceptance,
with struggle by your side.<span style="mso-spacerun: yes;"> </span>It’s not about
finding anything.<span style="mso-spacerun: yes;"> This last acceptance phase is</span> more a state of being. The whole thing is a philosophy that time + active healing,
could take you to still more places than you are right now.<span style="mso-spacerun: yes;"> </span>But you need to
allow the process of acceptance to continue to evolve to get any deeper than just seeing it.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">I have been thinking about that a lot lately--All the layers
that 2017 included for us. Maybe we are somewhere in between the seeing part of acceptance and the being part. It's progress all the same.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Recently our apartment complex replaced our 1939, single
paned, windows for new fancy double paned versions.<span style="mso-spacerun: yes;"> </span>Mind you, this window project started about 6
months ago.<span style="mso-spacerun: yes;"> </span>They had anticipated it
would be a simple process.<span style="mso-spacerun: yes;"> </span>A few weeks
at most.<span style="mso-spacerun: yes;"> First, new heat/ac, then p</span>op out the old windows, insert
new ones.<span style="mso-spacerun: yes;"> Easy.</span></span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"></span>And then they attempted the
first apartment.<span style="mso-spacerun: yes;"> </span></span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"></span>Nearly every window,
painted shut from 78 years of apartment life, would not budge.<span style="mso-spacerun: yes;">
</span>Thee ones they HAD opened (well, cracked them and couldn’t even get
them to shut again), wouldn't even allow them to remove the old fashioned a/c
units that were jammed in the windows. They promptly gave up for a few months, seeing it would be a much more labor intensive project than expected, until the weather cooled down.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Watching them literally bust out every window on our
apartment a couple of weeks ago, and have to clean up the shards of glass and
splinters of old wood, made me think of one thing:<span style="mso-spacerun: yes;"> </span>life after cancer.<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">No gentle replacement to life before.<span style="mso-spacerun: yes;"> </span>The only way we have managed to move along
that acceptance continuum is to just let all the windows break.<span style="mso-spacerun: yes;"> </span>And then one by one, cut, sand, and seal into
place new ones.<span style="mso-spacerun: yes;"> </span>I’ve had bit of
nostalgia watching the process of disposal at our apartment take place.<span style="mso-spacerun: yes;"> </span>Every day, the dumpsters filled.<span style="mso-spacerun: yes;"> </span>Not a single window intact.<span style="mso-spacerun: yes;"> </span>The salvage DIY’er in me felt sad.<span style="mso-spacerun: yes;"> </span>Yet it was the only way.<span style="mso-spacerun: yes;"> </span>And now?<span style="mso-spacerun: yes;">
</span>Perhaps we have less history in that place, but we have fully functional
windows that I absolutely intend on opening, as much as I can, to let fresh air
in.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Our life windows are open now too.<span style="mso-spacerun: yes;"> </span>Wil is in his last semester to finish up
coursework so he can take more of his certificate exams.<span style="mso-spacerun: yes;"> </span>He’s still got his eye on pursing his
Bachelor’s degree after he is done with this semester.<span style="mso-spacerun: yes;"> </span>His health has been OK (same old, same old, chronic
pain with some days better than others).<span style="mso-spacerun: yes;">
</span>We had a little scare around his 3<sup><span style="font-size: x-small;">rd</span></sup> stem-versary in October
(yes!<span style="mso-spacerun: yes;"> </span>He made it to year 3!) regarding his
kidney function.<span style="mso-spacerun: yes;"> </span>Just another “shit that
happens after intense chemo” side effect.<span style="mso-spacerun: yes;">
</span>They are monitoring it and he’s OK for now.<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">I am plugging along at 3 jobs, but I adore 2 of them, survive
off the other one, so life is pretty good.<span style="mso-spacerun: yes;">
</span>I am fully trained in EMDR now and working on my certification hours
while being supervised.<span style="mso-spacerun: yes;"> </span>I have some
dreams now again.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">I may be back on here soon, or we may just be out living
life for now and not processing through every little thing.<span style="mso-spacerun: yes;"> </span>But I promise to not disappear forever,
because this story is long from done.<span style="mso-spacerun: yes;">
</span>And for every heart break that we’ve shared, I still hope to document
some of the moments that are mending and replacing the shattered-ness, all
along the acceptance trail…the experiences<span style="mso-spacerun: yes;">
</span>that are sealing us up again. </span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">So now, here is where my heart is at in terms of the cancer
crap, in the lyrics of Paramore and pictures.<span style="mso-spacerun: yes;">
</span>Look it up if you’ve never heard it before.<span style="mso-spacerun: yes;"> </span>My heart aches and tears flow at the bridge…every
single time.<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="border-color: currentColor currentColor windowtext; border-image: none; border-style: none none solid; border-width: medium medium 1.5pt; mso-element: para-border-div; padding: 0in 0in 1pt;">
<div style="border-image: none; border: currentColor; margin: 0in 0in 10pt; mso-border-bottom-alt: solid windowtext 1.5pt; mso-padding-alt: 0in 0in 1.0pt 0in; padding: 0in;">
<span style="font-family: Calibri;">Much Love.</span></div>
</div>
<br>
<img id="id_4e0_ac1c_672c_70cf" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2JygFVZl59G1-rpDNm4NZwQ2mqxEmlPEtUaZX9OAGjHxCioe0N_haPEjFIxPXL83qC65fh5bL13190JjAC_A0uSdYb62ZiG8CKITNjKbYHhkoXXi2I4aEArvO6OyAYTJ7gqckM3srH2mu/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><div align="center" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"> </span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">“26” Paramore</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">[Verse 1]</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Man, you really know how to get someone down</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Everything was fine, until you came around</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">And I’ve been chasing after dreamers in the clouds</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">After all wasn’t I the one who said</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">To keep your feet on the ground?</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Man, you really brought me back down</span></div><div style="margin: 0in 0in 10pt;"><img id="id_7a6_9919_b060_7070" src="https://lh3.googleusercontent.com/-LC7tX0xsU_o/WnFaESGNdQI/AAAAAAABR3g/vAtMxD_3thI1mjZIlaRpb4TVwC-cIYg3QCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"></div><div style="margin: 0in 0in 10pt;"><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">Road trip to MN: July 2017<br></span><img id="id_f2a0_88b7_fc8_33d0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxT2y6g62Y2BvZ2cDt-3R0NG6O4sNmaqTjMszf2j9jNlJQ4ZcAHmkkX_UWdj7Ifa-Nzl24vpqUwWCLBHIxHiu3zITJqGY-EMGuRnqDzUYm8rd8PtMb66YtiU2zIvl3QPj59dCIFBOfJMwH/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><span style="font-family: Calibri;">MN Grandma’s 90th Birthday Bash: July 2017</span></div>
<img id="id_c88a_6b4_877b_e772" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbqUt4Fh9Ejjd1gS-yJ4Y8_r-em0zmrXmEk2DMIEorNMLztg9hfK8FqGwSp9jE9a87A_XGMJZh4pEbVqhTklRUmdcPcFkmpP-9RpcKOSHX6wpL2hTNbWQJ_zM_6GLMd6pYO7sTm5fTMMXU/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br>First Certification Exam Passed!<div><br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">[Chorus]</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Hold onto hope if you got it</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Don’t let it go for nobody</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">And they say that dreaming is free</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">But I wouldn’t care what it cost me</span></div><div style="margin: 0in 0in 10pt;"><img id="id_3132_ed45_9472_b512" src="https://lh3.googleusercontent.com/-6mNxekEo_PQ/WnFaYqpf2vI/AAAAAAABR3s/OL46EVvWoZkJKhE5cybG_XocXgWjVVB5ACHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><span style="font-family: Calibri;">Summer Fun: August 2017</span></div>
<img id="id_9cb0_dbfd_102d_ce15" src="https://lh3.googleusercontent.com/-T6J0pYlHTwQ/WnFaSBHy5WI/AAAAAAABR3k/DOMh0_NDpgkMQsXxp8ESvzy8Fw7-Y_FcQCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br>Paramore Concert: September 2017<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">[Verse 2]</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">You got me tied up, but I stay close to the window</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">And I talk to myself about the places that I used to go</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">I’m hoping someday maybe I’ll just float away</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">And forget every cynical thing you said</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">When you gonna hear me out?</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Man, you really bring me down</span></div><div style="margin: 0in 0in 10pt;"><img id="id_1981_ca42_6409_d0a2" src="https://lh3.googleusercontent.com/-eR8RGRauy94/WnFacUtsc_I/AAAAAAABR30/QLSAh3GsogY9ZhdbL9L3c89uXj8TjB39ACHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><span style="font-family: Calibri;">3rd Stem-versary Dinner: October 2017</span></div>
<img id="id_f765_4abe_485b_2d0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXHLg2QZLEMZczWB0T1Z_aLFJdO4idEjGFgyoqipHKKDQq-Khvhzn5jzEnoPYXMjFtNW_dBLXZWt1k8CA_Tgh8wLbe2MCA9tgFc_vIRjf3nF_MUvs9cnxueLZiRFHR26sV0-HJB3J0vWlW/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">3rd Stem-versary Dinner: October 2017</span></div><div><span style="-webkit-text-size-adjust: auto;"><br></span>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">[Chorus]</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Hold onto hope if you got it</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Don’t let it go for nobody</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">And they say that dreaming is free</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">But I wouldn’t care what it cost me</span></div><div style="margin: 0in 0in 10pt;"><br><img id="id_7453_1fd5_4d8_5344" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUKFM4UAqpUwDHEddmJ1XKDtLEF3wj2H4Y5jBZAj_w2keuo_G9XGAiTLNNO1qHqOC358axqc-B9_rnXUmDK6koKotyalO-bAD0D6ivjgYQ4cDBn_h9uEmkA_WvmNUMnQV3HHKkwDObmFDw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"></div>Thanksgiving 2017<br><br>
<div style="margin: 0in 0in 10pt;"><img id="id_6b1c_e312_3943_cf3d" src="https://lh3.googleusercontent.com/-M7w5cujEnvI/WnFag62ozKI/AAAAAAABR38/BiTh95DdxlAUuutJEWOeL87drjFxQbF_ACHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><span style="font-family: Calibri;">Thanksgiving 2017</span></div><div style="margin: 0in 0in 10pt;"><img id="id_bf79_d171_f470_e399" src="https://lh3.googleusercontent.com/-V0qckStKfUU/WnFaoV5O-uI/AAAAAAABR4I/-pDo-TLNa7kRc_WQuzCCmFZZRNF7ZvLbACHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><span style="font-family: Calibri;">Thanksgiving 2017</span></div><div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">[Bridge]</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Reality will break your heart</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Survival will not be the hardest part</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">It’s keeping all your hopes alive</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">When all the rest of you has died</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">So let it break your heart…</span></div>
<img id="id_3ca7_40ec_c4cc_959a" src="https://lh3.googleusercontent.com/-6adjFNp4pLU/WnFa8BdwvEI/AAAAAAABR4Y/i7QMlyEDp74gn9tMuaPds_DjoG6P2gV_QCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><div><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">Jen’s Birthday 2017</span></div><div><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);"><br></span></div><div><img id="id_54d5_f42_a3_73e4" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgilKNPYSgf5Z6E_U_S7Oc6VrxkB5Rs5y6QZyxEwTfD7k7VgO_t1oUcaZPqupGw0dOoZeF8vUFU0jIeZdDVJSHSK9D1t_HaBsImf88U4v2-C1eRSiJk5hHrY1JcLwkrDvMAKgXzn59x_og6/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">More Birthday 2017<br></span><br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">[Chorus]</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Hold onto hope if you got it</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Don’t let it go for nobody</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Hold onto hope if you got it</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Don’t let it go for nobody</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">And they say that dreaming is free</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">But I wouldn’t care what it cost me</span></div><div style="margin: 0in 0in 10pt;"><img id="id_6653_9513_70de_b22e" src="https://lh3.googleusercontent.com/-pHayxjvjj14/WnFa2yN6wAI/AAAAAAABR4M/v9mOqDX1uOUPddbcGZbHfVzqwaFiBS32gCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"></div><div style="margin: 0in 0in 10pt;">Salon Day: December 2017</div><div style="margin: 0in 0in 10pt;"><img id="id_4fa7_475a_4931_f9b7" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuXABnpdOpkiPhgqr_Hmm0aNO2DdGroDPax2Fpi05r1zboXh13WUtbXFVfM_qJT0FBHLsWfOyPsxFvewaUejvVkcokqq9YybzpMf02F3mUVw0gxCsH4ZJaxPYbum9SPuzHaLd_HvY9xnsh/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">Still Enjoy Our Naps: December 2017</span></div><div style="margin: 0in 0in 10pt;"><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);"><br></span><img id="id_2693_ab4_c50e_6de2" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicsyD9gFJim46w4qHML3wJbZtTEfJFPC6aVIf3a98Vr-EiT_2oMABvYgAzhdDekS9b71wl4_RwCMt4IFHk5PwIK9GKO4oak4OUwlgabY1MhAlsZzddRxa46C6jMrHXSUMw9Bo6XgN4ReLi/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><span style="font-family: Calibri;">Star Wars Release Prep: December 2017</span></div><div style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;"><br></span></div>
<img id="id_fd05_e2f7_ece6_29d9" src="https://lh3.googleusercontent.com/-VAMDPv1ta80/WnFa9kEX2xI/AAAAAAABR4c/KsIKerkFkvgRPqSppaTlLJpak-4eWVczwCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"></div><div><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">Little Reminders: From 2014</span></div><div><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);"><br></span></div><div><img id="id_997_edb3_434e_1007" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgc6Ejr1QQbgNvmwR-oQ-lQuhaQUs_kxqPQ70LrfBDAX0pG4bjZcQI7mQNaGGAY-zfPDKo_obvHuB-a1Lyi6wfEXP1d9-ZAspeZE_uMxXf5VZKIMmCMLRd01POT4kqkgoyVeZtuQwKloT6v/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">Niece Birthday Dinner: January 2018<br></span><br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"> </span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"> </span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"> </span></div>
</div></div>Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com2tag:blogger.com,1999:blog-88787859977003072.post-34059600320873847302017-06-23T23:53:00.002-05:002017-06-24T02:20:26.695-05:00In Gladness<div style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">Jenny here. </span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Two weeks ago today we were sitting in a dimly lit French restaurant
in Brooklyn with old and new friends.<span style="mso-spacerun: yes;"> </span>We
had flown out that morning to attend the weekend wedding event of one of my
college friends.<span style="mso-spacerun: yes;"> </span></span></div>
<img id="id_2ab5_fbf2_88ee_cb82" src="https://lh3.googleusercontent.com/-4TEVCb27lYA/WU35IYkKVPI/AAAAAAAA7fs/LfqABS04oOITB9Aa0G2pXZfoDphoZFH5ACHMYCw/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">I am going to start with the punch line tonight:<span style="mso-spacerun: yes;"> </span>Travelling post-cancer is not the same as
pre-cancer and despite my careful considerations of how we would be navigating travel
to, from, and around NYC, plans are made to change AND in that change, change
us.<span style="mso-spacerun: yes;"> </span>Or in our case, sometimes in our stubbornness
to NOT accept change, we still are changed, only through some self-inflicted
suffering.<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">The morning started off early, after just a 2 hour nap (we
keep a late schedule, so it’s hard to change that for just a weekend!).<span style="mso-spacerun: yes;"> </span>We were out the door around 4:00am, dogs
walked, fridge stocked with food and beverage for the pet sitting friends, bags
packed as light as possible.<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">“Just take carry-on bags” we thought.<span style="mso-spacerun: yes;"> </span>“It’s just a few days; it’s summer clothing,
save the baggage fees”.<span style="mso-spacerun: yes;"> </span>“We’ll get
coffee when we get to the airport. We have done this before.” </span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">4:04am. On our way to the car, running late, the extendable
handle to the rolling carry-on bag snaps off.<span style="mso-spacerun: yes;">
</span><span style="mso-spacerun: yes;"> </span>It’s too late to stop and buy
something else and too late to dig up another bag that would work. <span style="mso-spacerun: yes;"> </span>So we were off, busted bag and all.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">We decide to park in the airport lot instead of the further
away shuttle lots thinking the walk is not far.<span style="mso-spacerun: yes;"> </span>I mean, we have flown
before, pre-cancer, and this is NO BIG DEAL.<span style="mso-spacerun: yes;">
</span>We had talked about Uber-ing it from home, but decided not to do
it.<span style="mso-spacerun: yes;"> </span>So we parked.<span style="mso-spacerun: yes;"> </span>Handicap spot, mind you.<span style="mso-spacerun: yes;"> </span>It’s not THAT far.<span style="mso-spacerun: yes;"> </span>Wil with cane, back pack, and insisting to
carry said broken carry-on as we walked…and walked…and walked from the parking
lot.<span style="mso-spacerun: yes;"> </span>And then walked…and walked…and
walked through to the TSA area.<span style="mso-spacerun: yes;"> </span>The line
was terribly long.<span style="mso-spacerun: yes;"> </span>I asked Wil about
seeing if we could do the shorter “needs assistance” line.<span style="mso-spacerun: yes;"> </span>He proceeds to
the long line, still dragging bags, until an older TSA worker actually
insists, based on Wil’s haggard appearance, that we cut to the short line.<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Fearing a fall (or just plain extra exhaustion for him), I
pick up the bag I am now cursing we didn’t check at the front door, </span><span style="font-family: Calibri;">hauling it through the
airport.</span><span style="font-family: Calibri;"> </span></div><div style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">I was still un-caffeinated.</span><span style="font-family: Calibri;"> </span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">I was angry.<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">At the bag, at him, at me, at cancer, the universe, and nothing at all.<span style="mso-spacerun: yes;"> </span>This is not how I saw this trip.<span style="mso-spacerun: yes;"> </span>This is not how I saw us, ever.<span style="mso-spacerun: yes;"> </span>What should have been an easy,
done-it-all-before-morning, was turning out to be so so stressful.<span style="mso-spacerun: yes;"> </span>And all I wanted in that moment was our old
pre-cancer ease back. <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> For Wil to walk without pain and carry my bag. For me to just worry about stupid shit like picking a magazine for the flight. </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">After we made it to our terminal, there was a
Starbucks.<span style="mso-spacerun: yes;"> *Universe thank you!* </span>And I began the task of
waiting in line to grab us something for breakfast while Wil sat.<span style="mso-spacerun: yes;"> </span>I had asked him about pre-boarding, so we
would have more time to get him settled...he thought he might be OK. There is often this divide between wanting him to try at everything and worrying it will all crumble. <span style="mso-spacerun: yes;"> </span>Flying is hard when you are a big a tall guy,
especially one with neuropathy and a cane.<span style="mso-spacerun: yes;">
</span>Flying is hard on the short companion who sits next to the tall guy too.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Walking,
sitting, getting settled.<span style="mso-spacerun: yes;"> </span>Everything
just takes more time now.<span style="mso-spacerun: yes;"> </span>It happens,
just at the small expense of bystander eye rolls and impatient looks.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Hailing a cab at your destination?<span style="mso-spacerun: yes;"> </span>Should be easy too…except for the long hike
to the area they allow you to hail one at LGA.<span style="mso-spacerun: yes;"> Carrying the broken suitcase. </span></span></div><div style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">Nothing felt easy.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Side Note: <span style="mso-spacerun: yes;"> </span>We would
like to think of ourselves as generally honest, loving, smart, and kind
people.<span style="mso-spacerun: yes;"> </span>But we are bullheaded to a
fault.<span style="mso-spacerun: yes;"> </span>Both of us. I could go into more
boring details, but each detail contains this truth:<span style="mso-spacerun: yes;">
</span>Life is different now and we weren’t prepared to admit it or fully live in
that reality.<span style="mso-spacerun: yes;"> </span>So reality hit us squarely
in the face and said "YES, be here too. Be glad. Live."</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">We arrived at our Brooklyn brownstone Airbnb find, very tired.<span style="mso-spacerun: yes;"> </span>But happy that there was a freshly
made bed with a wide open window, breeze flowing in from the backyard garden.<span style="mso-spacerun: yes;"> And so I let go. Again. This. Is. Our. Life. And we're across the country. Something that two years ago was, forget easy, impossible. </span></span></div><div style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">I will let some of the pictures tell you the
rest of the weekend.<span style="mso-spacerun: yes;"> </span>It was beautiful,
each and every moment, from the Zen Buddhist ceremony, the gorgeous reception
with good food and wine (and even better people), <span style="mso-spacerun: yes;"> </span>hitting up the local bodega for breakfast
finds, hipster coffee, the Transit Museum, an afternoon in Brooklyn Bridge Park, and watching
the sun set behind the Manhattan skyline…sure, it was less walking than we would have done in years past (we did a lot of Uber to preserve Wil’s
energy), but we also did quite a bit of post-cancer-living-it-up as best we could...making memories, outside a hospital, together. </span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">And the best part?<span style="mso-spacerun: yes;"> </span>We
checked that effing broken bag on the way back, took the pre-board help, took
our time, lived out the lesson we had learned, and proceeded in gladness and
safety.<span style="mso-spacerun: yes;"> </span>I think there will be more
travel in our future, even if it looks different than before. How could it not? Acceptance is certainly not a destination, but instead a process of post cancer growth. Bring it on. We want to live some more. </span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Much Love.</span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">----------</span></div><div style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">On our way to our Airbnb, so tired:</span></div><div style="margin: 0in 0in 10pt;"><img id="id_128f_4b0c_f66_e61d" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1-FQeMRgZNp1VO2Yve_MykDc6z_c92WMEebg75JVSN-xEjicfX17DkcuXvLwVL7j7ZLOEjA5wkDoF8BXDXzafAXGwCI3Go8MmW59_KoKKsU8Zz8kEHDLlapjoGbGFiEN0o_cEimp3E8-f/" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <span style="font-family: Calibri;"><br></span></div><div style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">Airbnb street, door, room window:</span></div><div style="margin: 0in 0in 10pt;"><img id="id_4a83_595e_435f_a537" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg_80pVviCAid_L_G364mHRvROtsXNdEC38nVDRMlgglrYaJrE2pJTfSbz9RlRfHbqudMqk0MbmFEQijbIUJNEvyb-VH7LL6jxiMZaLwjMxJAQt2YDSfd5ywgi1CiETIYEQ_9Be93F6-Ro/" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <span style="font-family: Calibri;"><br></span></div><img id="id_c3b5_8b40_798e_60e0" src="https://lh3.googleusercontent.com/-JEK8shKpRyQ/WU4StHHM9tI/AAAAAAAA7h8/6y61mgFWU9A-8ZMdf3CGSdSnHvLg2xeMwCHMYCw/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br><div><br></div><div><img id="id_b709_2dad_afb0_5516" src="https://lh3.googleusercontent.com/-UStnj1dQM3s/WU3yvOrZS_I/AAAAAAAA7fU/SY0iorGOY64l-cB6KF45mgwvLde1VYG8ACHMYCw/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;">
</div><div><br></div><div>First meal: Shake Shack...hello old friend!</div><div><img id="id_9b3e_3b53_6191_c304" src="https://lh3.googleusercontent.com/-aTbKSlGXWqU/WU4SobJXwGI/AAAAAAAA7h0/fkvF4mg-D10ClDOkCBSjE8xONNkeVoAOgCHMYCw/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><br></div><div>Wedding Day</div><div><img id="id_6826_9563_5a69_7731" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqJxuub3Aii1jw7N8yJ8jXq4pDbLKnXQvKvZmES2sNxryQ4WmxLkqvuiExjdlXtZPkG8fdLYqJmKPEQ_vx0WCUbdH6Ya7_eib8grR2wkUkUSys2vHwrJei9WjgBgQfqTo9dTB96D6MpgHP/" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><img id="id_28a4_4409_dd18_97c1" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifBFevG9Td8IHz5W0qIBV-DTMPThgJFQPmeb81sZAkHESXHwxkj8iNzNIzizv4SVSGELGrgTccx8h9o4xhIPBJcKUsd6AYf27UW-n4mT4zXgSQfUT4v2ikDQzI3IhnsLFEzf7CQ2i8fY3p/" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><img id="id_1d62_a02c_56f5_9094" src="https://lh3.googleusercontent.com/-gbpW0YxgNgI/WU35IzmGJtI/AAAAAAAA7f4/38Lsk8GfsSUAQ7RS_rElLwWXwsCnvVP8wCHMYCw/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><img id="id_3736_e84_be03_22ad" src="https://lh3.googleusercontent.com/-rhzECVabN-s/WU35IwJ_lqI/AAAAAAAA7f0/a8Qo3cz8L6I6c06zRcg3EjpM2g_96LoKwCHMYCw/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><img id="id_b6ab_de72_6d8_e759" src="https://lh3.googleusercontent.com/-5Qb6ok3bfNs/WU35KaT6sUI/AAAAAAAA7gE/XR7QgFieEMoTx8A7mRoS7JIVpCWlNUjnQCHMYCw/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><img id="id_88e4_1c3a_d21f_aa5d" src="https://lh3.googleusercontent.com/-hg86NzanaV0/WU4SbCPqXTI/AAAAAAAA7hs/9S2bHcse7wUnnWpsS6-60s5wSlebGYLvQCHMYCw/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><img id="id_de8b_4ba3_793e_88e" src="https://lh3.googleusercontent.com/-9nVDMrbki4I/WU35KRT9_zI/AAAAAAAA7gI/EI78c7fkXUA6jCyoACz1G-a3zTfcbpzCQCHMYCw/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><br></div><div>Transit Museum</div><div><img id="id_d45_8cf6_bd06_105e" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjdMrAPNr2nv3yMG2yTE1ETnUjQgBzBzVVbG73SgXf_oa_Icfa9GyOilpjilFXNP0NTrt9Qry6BTYtCcUzSUFW2AmA2Vin1eDyPX-hjrhXtdYbfeSb8G2vtquBSQH-0PDSt1_IRDgEgit5/" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><img id="id_7e37_7609_32f8_8bde" src="https://lh3.googleusercontent.com/-dTrr1bgLYpk/WU35KtzREzI/AAAAAAAA7gM/GH-W5RvmtbcI_-Kc4dErQ0Y4NmtNqed3QCHMYCw/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><img id="id_e82b_c1dd_8203_9ab5" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAnxepNEXj53vO_3VuxTQX7xrtDd3OlIduf4s9WqUW0hNwxZtc6_O3K8X8wPWdjkCwfgyiMhVFwT1jv4Bu_hAc5KEqtsIP4qaqn8TQlE6eOnCUWFpBTGYCK0dFs4SUjQCJ8MQY2ED_taR7/" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><img id="id_62c0_aa5b_3191_3b1a" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh499FScZ3kZbabLYJ_-a2TBV7A90GFAnZLuIV7TyA0qy7VRFqLouQ-kplDF0dnUtAAHB_xkMfn7afLVZ4IbqHrKWxNueHdmrM8-V_-bItqbonpZdE6L_0mAV0V-WMiCb5TqH0P36s1P4q/" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><br></div><div>Brooklyn Bridge Park </div><div><img id="id_aa69_1cef_7c6b_4c23" src="https://lh3.googleusercontent.com/-LXzNuqoA7zo/WU35Kx9p7ZI/AAAAAAAA7gQ/ICR5VnseqJUBQygMdXI63IY4DIeMLnsPQCHMYCw/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><img id="id_117b_fe75_71c5_5932" src="https://lh3.googleusercontent.com/-g0rHg0WH4-s/WU35LoO1omI/AAAAAAAA7gY/ti69ELQz78EH71MPR4ju6b5XD1hZEVu7gCHMYCw/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><img id="id_e655_d52e_ad0c_7a47" src="https://lh3.googleusercontent.com/-oK94kYPCQqg/WU35LY5LDzI/AAAAAAAA7gU/6CnBHC_HAp4_jZ5fRBe7JW3Dee7L7XI4wCHMYCw/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><img id="id_4085_d4f8_3158_761f" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPOAjQxziOfjmQioWQ3m6rIfrwVBaw2PNF-GirGO5Tc3Es8n9yYQhfqra0kgVmTN34ghV7juE5WblkHtso-LlGI3rxw_LEPirOQ-hkt1V0uac2RjgZDkNVVLznuX7cNLsWAr-dn1M8pyTS/" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><img id="id_96a2_6b1d_9f64_1780" src="https://lh3.googleusercontent.com/--9KVzi-BXy0/WU4Srz5nl2I/AAAAAAAA7h4/LykKtD6xdgsoxMN35ZioQEoBdMu3WIcZgCHMYCw/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><img id="id_7a17_dd1b_15a3_f7c9" src="https://lh3.googleusercontent.com/-v0Nd2MeAAaM/WU35LrOsuzI/AAAAAAAA7gc/XWqYRzciH_gRwiyMZlg9QBPfE5NZtf0TwCHMYCw/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><br></div><div>Bye NYC!</div><div><img id="id_71bc_f615_3428_cc26" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1JmpHEvNWJgE40uE3ZEaVANJMI6tzC22JVCkJSYZnS9mRJxFVNThuk8k7L6eKUwt8UeFMa8MxeX5XA2sV_KdrMqss5iSFA8gg45KCenGpSp9R4H4ScTYi1OnstkSFaJuOIMwk338GTCb9/" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div>Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com0tag:blogger.com,1999:blog-88787859977003072.post-59088653057689236432017-06-05T03:24:00.001-05:002017-06-05T03:54:01.420-05:00She thoughtJenny here.<br>
<br>
It's Day +970.<br>
<br>
Do you know what that means? 30 days until we hit 10 x 100 days.<br>
<br>
Each day of the first 100 days post transplant (attempt number 2), felt like 10 years. And yet now, here we are approaching 1000 days. Dare I say, there are a few days in a row we have lost count...and just loved and lived like regular people. <br>
<br>
Updates: Wil has killed it in school lately. He worked his tail off spring semester and is now in summer session. Little by little he's chipping away at this new dream. Physically everything is pretty much status quo. I long for the day I can report his pain has lessened. But for now, we keep on going. He seems to learn to manage it. I let go a little more each day and let him. Truth be told he might say I'm a bit of a smother yet. But I swear it's out of love. <div><br></div><div>We had a fun Memorial weekend just hanging out in Fort Worth--Coyote Drive-in, Water Gardens, home with the niece and nephew.. I had to work on the actual day, but even just a moment here or there to unwind is a welcomed change from say, 400-970 days ago!. </div><div><br></div><div><img id="id_c46a_e66b_ebcd_982a" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHD1HLlL3sVJZkiP0c7zTML4tM1Nx1_mm0NB6ix_63Q6CPdv3WezkBbGn68xggPLrqFDyGSx890cUZW1dnSMebua4_PmoYeXcwrIQWOQZvQTetW27ci8iqpBpmrhIQEIz_HwS3R8Yhu6c5/" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><br></div><div><img id="id_50bd_ec94_4ab8_8ba2" src="https://lh3.googleusercontent.com/-GegQhxNShwo/WTUR0yPelXI/AAAAAAAA7dE/TTOVYlb8s-4sTIdywLzD2_4Lmub32pslQCHM/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br>
<br>
For me, I've now started my journey into incorporating EMDR in my clinical practice. I love expanding and learning, and like Wil who had to push that aside, so did I during cancer. Having the energy and excitement to do something new? I wasnt sure I'd get here again. </div><div><br></div><div>I had an intensive first weekend of training in May, with many miles (years) to go yet for certification. But this approach really resonates with my soul. Tending to the emotional brain. Cleaning the wound. Letting the mind be and noticing it. I've often said chemo, and the likes of most medical intervention, doesn't actually heal anyone. It just wipes the slate clean to let the body have the chance to heal itself. Sets the stage for nature and body systems to repair. So you can imagine my soul shouting "yes" when I was smack dab in the middle of my training weekend and found that this concept is what carries one through, with gentle curiosity, the EMDR process.<br>
<br>
We are meant to heal. We are meant for wholeness. All we need is the right environment and people to assist in cleaning out the wound, to let the scab form. The body can do what it was designed to do.<br>
<br>
It was a really tiring, but good weekend. And the Universe had me in mind when a fellow soul sister happened to enroll, without either of us knowing, in the same training! I'd like to think it was not just coincidence, but more so another intervention, another kindness I needed. <br>
<br>
Tonight I'll keep it brief. I had been half asleep, setting my alarm, checking social media, when I opened up the ihadcancer.com 2016 top blogs post. And there, a few blogs in, was our little old page. As a caregiver who often has just wrote, shut the laptop, and kept running on fumes, with a blog full of edits that could be made (but won't because I've decided it is what it is and reflects that day), I was first surprised. And then, filled with warm emotions. I feel honored to have put down a few words that may have meant something to people outside our tribe.</div><div><br></div><div>And, Universe, the quote they picked? Its based on experiences I've had with some treasured few along the way. The cleansers to my wounds...so my heart could begin to heal the way it was crafted. </div><div><br></div><div><img id="id_b4cf_6d1a_e317_1a33" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXNTf7Y0OjbVqkkl_2jVI4qBAI5sfMROKl8GE-oe4v_9_T30Y8aC8pazJ1o2KikhlkJ_b9p9uhFT73odtAOHhjWzHPD1tCzbzlcPdslT9cw8WcHkG3l9yYCQtutlunPUYuYOg3Gt-_Yl0Z/" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br><p style="margin: 0px; font-size: 12px; line-height: normal; font-family: Helvetica;"><a href="https://www.ihadcancer.com/h3-blog/01-03-2017/ihadcancer-blog-awards-of-2016" id="id_a1a3_f1f3_b684_c8aa" target="_blank">https://www.ihadcancer.com/h3-blog/01-03-2017/ihadcancer-blog-awards-of-2016</a></p></div><div><br></div><div>
I know I've kept saying I would someday release some unpublished blog posts. There aren't dozens. But there are a few I didn't have the space for on here emotionally. </div><div><br></div><div>I'm finding, lately, that these little fragments aren't so scary anymore. If anything, they memorialize a time and place I remember but no longer live in. I see them, but I'm not carrying them all the time. Below was what I scribbled when I learned Wil's first transplant didn't graft. </div><div><br></div><div>Before I blogged it. There were these few words. </div><div><br></div><div>Much love. </div><div><br></div><div style="text-align: center;">--------</div><div><br></div><div>She Thought 9/19/2014 </div><div><br>
She placed her cell phone, upside down, on the corner of her desk. It was there, in black letters and bright screen, the news of the day. She thought, if only I can hide my head away in this cube for 4 more hours. Hide the sniffles as allergies, chuckle at a coworkers joke until the tears looked like joy.<br>
<div>
<br></div>
<div>
On the way down the elevator, she breathed deeply and made idle chit chat. She thought, if only I can make it out the door and slip into the darkness before I fall, tumbling apart.<br></div><div><br></div>
<div>
She had done this many times before already, clouded, sticky contacts in her eyes, balancing the need for a speedy trip home with not getting pulled over for grief intoxicated driving. A million thoughts rehearsed in her head. No officer, I haven't been drinking. I've just found another level to this grief maze. I just need to get home. How do I get home from here?<br>
<br></div>
<div>
<br></div>
<div>
But she had driven down "Interstate Unimaginable" many times since the diagnosis, thinking faster than the posted speed. And always made it back. <br>
<br></div>
<div>
<br></div>
<div>
She barely made it in the door, without dropping everything. She stood alone in the hall, like she had done 143 days already this year. </div><div><br></div><div>And then she laid right there. In the entry, keys in the lock, dogs barking, heaving her breaths into the laminate floor. <br>
<br></div>
<div>
<br></div>
<div>
How does one manage when every day is a new adventure land of rare complications?</div><div><br></div><div>She thought. </div><div><br></div><div>But this here? She felt this. Deep as bone. </div>
</div>Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com0tag:blogger.com,1999:blog-88787859977003072.post-17350579485297424232017-04-21T00:01:00.004-05:002017-04-21T04:13:19.290-05:00Green<div style="text-align: left;">Jenny here. </div><div><br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">Once again, I have contemplated this blog for months.<span style="mso-spacerun: yes;"> </span>In my head I have written pieces of it every
day.<span style="mso-spacerun: yes;"> </span>Honestly, it blew my mind, looking
at the blog today, that’s it’s been months since I wrote.<span style="mso-spacerun: yes;"> I see I have even saved several drafts on Blogger along the way (perhaps I will publish some "lost blogs" that I never finished at a later time). </span>I’ve tried to post on our Facebook page our happenings and thoughts, which felt easier. Little snippets of
life.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>I think this “life post-cancer” piece of
things is less written because showing the whole
of it is more difficult for me to put into words. </span></div>
<img id="id_b8c8_36e8_28fb_6b76" src="https://lh3.googleusercontent.com/-G9htL7Buj2A/WPnEV_M754I/AAAAAAAA7WM/TUdCmBuFXNA/%25255BUNSET%25255D.png" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">How do you describe the vast lost-ness and big-ness?<span style="mso-spacerun: yes;"> </span>It’s much easier to post lab results, share
the terror of crisis moments, then to find a way to relay the quietness of
living a new life you don’t quite recognize.<span style="mso-spacerun: yes;">
</span>I know I have said it before, but it’s a whole lot of soul searching,
after the ashes settle, until you get to the work of rebuilding.<span style="mso-spacerun: yes;"> </span>I think last year, for me, meant drawing up
new plans and getting building permits.<span style="mso-spacerun: yes;"> </span>LOTS
of ground work before any construction could begin.<span style="mso-spacerun: yes;"> </span></span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">For some reason, the past few months have shifted us, again. We aren’t as much in the planning stages of creating, we are actually
living it out as is—still messy, still unknowns, still times when measurements
need be retaken or redone.<span style="mso-spacerun: yes;"> </span>Our “house”
is bare bones, but there are beams up…and I am starting to see the shape of
things that may come.<span style="mso-spacerun: yes;"> </span></span></div>
We have been busy. We have been out and about. </div><div><br></div><div>December was a big trip up north to Minnesota. Time with grandma. Snow. Dogs. And many miles. <div><img id="id_7f79_9905_87b7_326f" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtU5bSZf1bK-MyCEyJyoEP1sURL7uQE8Ly6km0VwYIKMT70syZXEt97Bch7sL8Ybq1VkK7_LJb6WlU4OoK3lSF8Qos1lt5xS87cUJ7NYdAKpJC10Goi7OUiUnEYlCtcY1NMDYUYmQ0Hp2R/" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><br></div><div>We've spent a majority of time at home though, because we love just being there. There's been some fun along the way too. We are still diggin' Fort Worth and, when we can, like to get out for a stroll, show, or dinner. Every few weeks we go to Aveda together and get our hair done. Wil waits because mine takes longer. We get breakfast or lunch, depending on the time of day. It's sweet. (Yes, we are THAT couple, and we've earned all of it!). </div><div><br></div><div>We drink lots of coffee. Stay up late. </div><div><br></div><div>It's a nice, simple life at present. </div><div><br></div><div><img id="id_a7ab_7808_88ca_7f16" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifczfncHsxzngxhC90n_E025X1uGBd3JqSjIChE1XlYsVCMAKGT6KJCPfACi1cgRtbdEHs6U2zcCUcZ_dNx3RlMdKYwR-ua8Nh8G9sl1CH2H_rKJE-l10zMVReVS2NWHXFPmoBuhEalywW/" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br></div><div><br></div><div><img id="id_8ba7_bf3d_99c2_7723" src="https://lh3.googleusercontent.com/-fCX0ckyVQAo/WPm-ZqB-PtI/AAAAAAAA7V8/Uw0ip3Snkp0/%25255BUNSET%25255D.png" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">Basically it’s this:<span style="mso-spacerun: yes;">
</span>every day gets more manageable lately.<span style="mso-spacerun: yes;">
</span>The moments of sadness, fear, and bewilderment get shorter, less
pronounced, less intense.<span style="mso-spacerun: yes;"> </span>The joy
and gratitude has been there all along the way, but in the stillness of this leg
of things, both possess a freedom now.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>I can only describe it as the difference
between carrying joy and hope versus walking around with joy and hope by
your side.<span style="mso-spacerun: yes;"> </span>The shadow of cancer is there
in each scenario, the joy and hope is just as strong, but your arms are open to
hold on to other things when it's a partner, not a passenger.<span style="mso-spacerun: yes;"> </span></span></div><div style="margin: 0in 0in 10pt;"><img id="id_4d03_a414_e859_5a87" src="https://lh3.googleusercontent.com/-E684PiMsex4/WPnEWESsloI/AAAAAAAA7WQ/5Cn4Brkgh0M/%25255BUNSET%25255D.png" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <span style="font-family: "calibri";"><br></span></div><div style="margin: 0in 0in 10pt;"><span style="font-family: "calibri";">Joy…hope…these
feel different when you don’t have to hold on to them for dear life every
moment of the day.</span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">On Tuesday we spent the day at UTSW for a 6 month check up
with oncology.<span style="mso-spacerun: yes;"> </span>While Wil has had some
follow-ups with other doctors, we had not been back to BMT for 6 months. He
has had no blood work since then either.<span style="mso-spacerun: yes;">
</span></span><br><span style="font-family: "calibri";"><br></span><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Side note: The night before clinic this week, I had to ask hope and joy to crawl up on to my lap again. I didn’t sleep much. I wasn’t in a state of panic, but the reality and memories tend to flood back at 3am, in the dark of night. It’s impossible to completely describe. There isn’t the same fear of cancer, because it’s a known we have with us—always. But there is a deep breath, a holding of space, for what it means to look forward when you know up close and personal that the worst can happen to you. I honor that space, and I honor that feeling of held breath, because within it lays gratitude for each day and each next sip of air. It's just hard to sleep while holding it. </span><span style="font-family: "calibri";"><br></span><br>
<span style="font-family: "calibri";">Walking in to clinic was surreal.<span style="mso-spacerun: yes;">
</span>Flashes.<span style="mso-spacerun: yes;"> </span>Emotions.<span style="mso-spacerun: yes;"> Seeing the door that he came in through via transport 3 years ago. Have you ever felt like you were back home but...not really?</span></span><br>
<span style="font-family: "calibri";"><br></span><img id="id_c210_71cc_7a69_2c37" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIo059q2YAyAteXYKtbR5AbcflfzjETVu_QJlw5CrJ6EziQkl9VhgqjgcJr8GFEsM9u83rAR6p8CWgCO7nwS_wqGESy_PNdAUjboDMY7ojckMAj8-JGX39qBsU9Ilqcg14qXuWFaot5heh/" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br>
<span style="font-family: "calibri";"><br></span></div><div style="margin: 0in 0in 10pt;"><span style="font-family: "calibri";">After checking in, we were directed to sit in the big waiting room.<span style="mso-spacerun: yes;"> </span>I whispered to Wil, “We’re in Gen Pop now.” <span style="mso-spacerun: yes;"> </span>In the past we did all our waiting in the BMT
small waiting area.<span style="mso-spacerun: yes;"> 100% masked. </span>But Wil’s mediport
came out at the end of 2016, his counts are normal-ish, and he’s OK.<span style="mso-spacerun: yes;">
</span>So there we sat, unmasked, with everyone else.</span><br><br><img id="id_4bf2_625e_2231_e065" src="https://lh3.googleusercontent.com/-M0ctBK4u01Q/WPnEZGFUs9I/AAAAAAAA7WY/JVDESJMR0o4/%25255BUNSET%25255D.png" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br>
<span style="font-family: "calibri";"><br></span></div><div style="margin: 0in 0in 10pt;"><span style="font-family: "calibri";">I looked around at
the people in the varying degrees of treatment and physical strength.<span style="mso-spacerun: yes;"> </span>A few in wheelchairs. Some with oxygen. There were all stages of eyebrows and hair growth. The homecoming part for us is that there, everyone gets it. Without words being spoken, a tip of the head or smile is enough to know...they know too much too.<span style="mso-spacerun: yes;"> </span></span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">It hit me hard, as we waited, <span style="mso-spacerun: yes;">the incredible miles we've come. To be here at THIS exact second. </span></span></div><div style="margin: 0in 0in 10pt;"><span style="font-family: calibri;">At one point </span><span style="font-family: calibri;">I realized I was
actually sitting in the EXACT chair that I had sat in, the first time Wil was
transported via ambulance from the SNF to clinic.</span><span style="font-family: calibri;"> </span><span style="font-family: calibri;">He could barely sit up and wasn’t breathing
well.</span><span style="font-family: calibri;"> He couldn't speak. He had lost most gross motor control. </span></div><div style="margin: 0in 0in 10pt;"><span style="font-family: calibri;">Our doctor’s nurse reminded me, later, that on that first meeting, I told her straight away, “this isn’t him,” and described in detail the man they would someday see when he was well again.</span><span style="font-family: calibri;"> My own version of a love song. </span><span style="font-family: calibri;">She said to look at him now…she could see
what I had been trying to relay to them 3 years ago.</span><span style="font-family: calibri;"> </span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">Wil has been doing well these days.</span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">Side note:<span style="mso-spacerun: yes;"> </span>When
someone is post-cancer or post-anything, please know that “well” is a loaded
answer.<span style="mso-spacerun: yes;"> </span>“Well” often means, there is
chronic pain, there are obstacles, there is the shadow of what was…but there is
waking up daily, there is love, and moreover there is a growing ability to handle all the
hard stuff of real life.<span style="mso-spacerun: yes;"> </span>“Well” is all
of the above.<span style="mso-spacerun: yes;"> </span>And it’s a bummer to get
into specifics about chronic issues when people ask, so you start to just say
you’re “doing well.”<span style="mso-spacerun: yes;"> </span>It sure is nice to
have a few people who get that "well" is more about how you are
handling things then about anything else.<span style="mso-spacerun: yes;">
</span>It’s a thought that has greatly impacted my own life and career
post-cancer. Well is a moving target.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">But Wil is well.<span style="mso-spacerun: yes;"> </span>There
continues to be chronic pain in his feet, from the past chemo that helped save
him, and in his eye socket and head from the shingles this past fall.<span style="mso-spacerun: yes;"> </span>If you ask him, “how are you feeling?”<span style="mso-spacerun: yes;"> </span>He’ll say he is great without skipping a beat.<span style="mso-spacerun: yes;"> </span>That is choice, and is who he is from head to
toe.<span style="mso-spacerun: yes;"> </span>But strangers have come up to him
and asked if they could pray for him and his pain.<span style="mso-spacerun: yes;"> </span>He is blown away.<span style="mso-spacerun: yes;"> </span>He asks, “How could they know?”<span style="mso-spacerun: yes;"> </span>His mouth smiles, his laugh is contagious, but his eyes are often
tired.<span style="mso-spacerun: yes;"> </span>The cane has helped, but his walk
is slow.<span style="mso-spacerun: yes;"> </span>For him, he’s happy to be alive
every day.<span style="mso-spacerun: yes;"> </span>For me, each day I am amazed,
broken, and rebuilt by witnessing his pain, and spirit to carry on despite it.<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">He is still chipping away at classes.<span style="mso-spacerun: yes;"> </span>He’s taking courses as he’s able and working
towards some IT certificates in things I barely understand.<span style="mso-spacerun: yes;"> </span>I dare say, we talk about what life might look
like in 2 years.<span style="mso-spacerun: yes;"> </span>And it feels good.<span style="mso-spacerun: yes;"> </span>I am happy to be working more than fulltime,
which means he can take the time to be in school without working right
now.<span style="mso-spacerun: yes;"> </span>He fought that plan, and me, because of feelings that he should be contributing more, but lately has become more OK with focusing on
school and doing well.<span style="mso-spacerun: yes;"> </span>There will come a day when he
works.<span style="mso-spacerun: yes;"> Or a day that he carries more of the load. </span>Right now, school is enough, and
I am happy to be able to support him in doing it. And the dogs are happy too about having him around!</span></div><div style="margin: 0in 0in 10pt;"><img id="id_c084_773e_a746_6b1b" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPyjYYtrr24XZUghBM9df3TiIxRqfH1veG_-BmCAuzs81WWUNVJdtXgrmNSnnMjnHmMbd8eSk6MBINIhygpwbQ_4oRdMDeTQB_Wx3hRpyI1qgNrm9FRb505btBM0vcr151Qf9nvXarNdSa/" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <span style="font-family: "calibri";"><br></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">I look at him and it’s almost more than I can bear--the love
that has evolved and grown is like no other.<span style="mso-spacerun: yes;">
</span>My heart beats fast these days, like those first few years together, but the cadence
is sweetly tempered with the comprehension of life’s fragility. <span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">And me…for three years I have said “life is too short to use
the econ button” on my car.<span style="mso-spacerun: yes;"> </span>YESSSSS, it
saves a little gas, but my Honda accelerates at a moderate pace when it's engaged and I have places to be!<span style="mso-spacerun: yes;"> </span>The fact that I have been using it lately…well,
it says a lot about where I am with things.<span style="mso-spacerun: yes;"> And the pace of life. Slower. Steady. </span></span><br>
<span style="font-family: "calibri";"><br></span><img id="id_2e59_38d8_b669_594d" src="https://lh3.googleusercontent.com/-2x5nGEPVniA/WPnJtthBX4I/AAAAAAAA7XI/NsBKd_2ReXk/%25255BUNSET%25255D.png" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br>
<span style="font-family: "calibri";"><br></span></div><div style="margin: 0in 0in 10pt;"><span style="font-family: "calibri";">I don’t need to rush this part.<span style="mso-spacerun: yes;">
</span>And it’s OK to slow down and use my energy more efficiently so I can get
as many miles out of each tank.<span style="mso-spacerun: yes;"> So that, my friends, is what I am doing. </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">In just a few weeks I will start a 50 hour class towards a
certification I have wanted for years, and finally have the mental capacity to
do.<span style="mso-spacerun: yes;"> I saved my pennies and cashed them in on me. </span>It may take a few years to
fully complete, but I’m chipping away at little goals of my own too.<span style="mso-spacerun: yes;"> </span>I’m cooking all the time, which is centering.<span style="mso-spacerun: yes;"> </span>I’m sleeping.<span style="mso-spacerun: yes;">
</span>I’m good at just being home.<span style="mso-spacerun: yes;"> </span>And I’m well…the kind
that encompasses it all the feels.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">We left clinic with good news this week.<span style="mso-spacerun: yes;"> </span>His counts are steady.<span style="mso-spacerun: yes;"> </span>There is nothing remarkable going on.<span style="mso-spacerun: yes;"> </span>He will have the standard work up at his 3<sup><span style="font-size: x-small;">rd</span></sup>
anniversary on October.<span style="mso-spacerun: yes;"> </span></span><span style="font-family: "calibri";">That's 3 more Texas Bluebonnet springs than we thought we might have together. </span><span style="font-family: "calibri";">Until then? Just
the regular doctor, as needed.<span style="mso-spacerun: yes;"> </span></span><br><br>
<span style="font-family: "calibri";">We walked
away from BMT, with his only stated prescription from his oncologist, to “just take care of your wife.”<span style="mso-spacerun: yes;"> </span></span></div>
<img id="id_7c18_757f_bc1f_805b" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdP6nihwhh135H2HUvPyiy5foSY2r7QXUYiFyy25gI495V9c4Q6VSgIBUQDt78qibD2J8Cr59LfI9zfl-nMSkoBdW_YOeLssnnIeeWQJ2HMNC-vorqTUE-_Mb1KSpSyNbcuMChwJrBn4AU/" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br>
<div style="margin: 0in 0in 10pt;"><span style="font-family: "calibri";"><br></span></div><div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">And I think...I think I will let him do just that.</span></div><div style="margin: 0in 0in 10pt;"><span style="font-family: "calibri";"><br></span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">Much Love.</span></div><div style="margin: 0in 0in 10pt;"><span style="font-family: "calibri";"><br></span></div><div style="margin: 0in 0in 10pt;"><font face="calibri">(Pictures from our now annual Bluebonnet tour. Ennis, TX)</font></div><div style="margin: 0in 0in 10pt;"><img id="id_95b9_3027_7e2e_58a4" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAKHNz_0NQPjq9KlJVYWHgY9ohl5cgrwwsguskKZ3eOIlN8OvieW3OTA9xfW0nxtZ5Wq-x8qBwnSadITgMwGfpDJJidVjK39g4ErNY765JYGq6OBeTHqQeqf-ejF1jxqRMup8GRUzVTjhd/" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <font face="calibri"><br></font></div>
<img id="id_e4bb_59ea_bd4_8ba5" src="https://lh3.googleusercontent.com/-qJk1Z18TR_E/WPnH8zyhlzI/AAAAAAAA7W8/GQLeqkVV8ek/%25255BUNSET%25255D.png" alt="" title="" tooltip="" style="width: 392px; height: auto;"> <br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";"> </span></div><img id="id_3b31_f6c8_d748_39b6" src="https://lh3.googleusercontent.com/-UpW0D2r2ANY/WPnHKzOi4nI/AAAAAAAA7Ww/WWZvfXlcoqA/%25255BUNSET%25255D.png" alt="" title="" tooltip="" style="width: 392px; height: auto;">
</div></div>Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com2tag:blogger.com,1999:blog-88787859977003072.post-69225250589333512452016-11-18T23:34:00.000-06:002016-11-18T23:50:55.174-06:00Taking Off/LandingJenny here.<br>
<br><br>
On Monday, Halloween day, I was in a plane headed to Chicago for the week to work. It felt epic, in that it was my first flight, first week, away from Wil since diagnosis. And I was holding back tears already.<br>
<br><br>
The day before we had marked 2 years since discharge from his stem cell stay (10/30/14). Two years ago, after many times of thinking he would never leave that hospital alive, he stood up in that parking lot feeling the breeze on his face for the first time in almost 3 months. But during the weekend, our celebration was cut short and we headed for what used to be a typical "date night," circa 2013-2014: hours together at UTSW. In the ER.<br>
<br><br>
In October, when we received Wil's anniversary test results, we found out that, although the transplant wiped him of HIS chicken pox immunities, they are back. From his donor cells. This was actually OK news at the time. Post transplant folks cannot get live vaccinations (ever again) and adults who contract chicken pox, let alone someone like Wil, are at high risk for complications. So, we thought, SCORE! One less scary thing to worry about down the road.<br>
<br><br>
Fast forward to the Thursday, before I left for Chicago. Wil, in the middle of midterms, was feeling off. Headaches, watery eye, fatigued. Friday, he noticed a few smallish bumps on his right eye lid and forehead, along with continuing headaches on just the right side. Now, post transplant he has had lots of pimples as he often breaks out from his oil glands acting like they are teenagers again. He chalked the headache and eye puffiness up to seasonal allergies. But by Saturday, his eye was swollen, his eye painful now, and clusters of bumps appeared. He called the on call oncologist and we headed into the ER.<br>
<br><br>
Side note: Whenever there is the unexpected I worry about two things: GvHD, or worse yet, the return of this leukemia. A moment. A text. A phone call. And I am suddenly transported back to the land of cancer via the Death Valley expressway. I know that may sound so full of gloom, but this is life after and why it's hard to let down your guard all the way. I realize my brain, like all of us, is negative tilt, looking for the scary in an effort to avoid anything lethal. My brain wants me to survive. And so, in these times, there are only 3 immediate choices: fight, flight, or freeze. Usually I go through all of them before I can ground myself again. Post cancer fun times.<br>
<br><br>
This didn't look like GvHD (been down that road!) and shingles? On the face? Google images provided some direction, but his just looked...different. One look at it from the ER doctor and it was confirmed: Shingles of the eye. They ran tests, blood work, and he saw an ophthalmologist (since it can cause blindness)...all of which came out good. He was sent him home with medicine and strict advice to stay away from other until he recovered. What's funny is that he was prescribed the same freaking medicine he had been on for 18 months, as a protective measure, post transplant. So strangely it felt too familiar--Hello old Valtrex friend...it's just you, me, shingles, and a lot of couch time. <br>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisJv04POB6YLbGa4uiThjYATCp4bO5HifV0dbOW78wP4maR22sc9cXCiiaVUyIXMhvxngbyvGoNASZzKvEdHqSC5QE8LeYamU3gRn7GKTU1iHElt79Q_frAB7AyhlQr9MBkE-O1jgO3851/s640/blogger-image-1086491444.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisJv04POB6YLbGa4uiThjYATCp4bO5HifV0dbOW78wP4maR22sc9cXCiiaVUyIXMhvxngbyvGoNASZzKvEdHqSC5QE8LeYamU3gRn7GKTU1iHElt79Q_frAB7AyhlQr9MBkE-O1jgO3851/s640/blogger-image-1086491444.jpg"></a></div>(ER Wil felt better than any day since...)<br><br>
Side note about shingles: If you are in good health, with a normal immune system, and have had chicken pox, you are not at risk to be around someone with shingles. The shingles virus, if you have had chicken pox, is already a part of you! But it you have not have chicken pox, are pregnant, or immunocompromised, stay away from someone with shingles until they are no longer contagious (oozed and crusted over, lovely!). I was in no risk, but certainly others could be in one of those categories, so it was stay home for 1-2 weeks. And the face? Not the most likely place, as it's usually on one side of your torso. Wil....never doing things the likely way!<br>
<br><br>
So I shopped and prepped the apartment for Wil's quarantine. I tried to think of Wil as my kitty. <br>
<br><br>
Food. Check. <br>
<br><br>
Litter, I mean toilet paper. Check. <br>
<br><br>(Calming breaths) "He will be ok, for a few days, of me across the country"...Check???<br>
<br><br>The mere thought of getting on the plane was, emotionally, almost as hard has leaving him at the SNF that first day. I told myself this is not the same thing AT ALL. But that dang brain stem...was all about the anxiety. Leaving him for the first time was already going to be hard enough, leaving him like that was so much harder. Admittedly, we are connected at the hip most days, for the past three years. He was trying to keep his spirits up, joking about keeping this "in focus" and any other eye joke he could think of at the time. I knew though, he was being brave and this was a hard time for me to be away.<br>
<br><br>
So, having cooked more food than he could possibly eat, having set up a few back up plans should things get too bad, I walked on to that plane, missing him already. <br>
<br><br>
He sent pics daily to update me (I will protect you from the horror of what his face has looked like...people say they can imagine, but honestly, I could not! It is far more gruesome and painful than all those shingles medication commercials makes it out to be). It was so hard to see the progression. Every day got worse. <div><br></div><div>I managed a few beautiful days in the north though, saw some lovely souls from the past, and got to absorb the energy of the city the night they "flew the W" on game 7. And was SO ready to be home with my favorite person in the whole big world who needed me. He had put on a brave front, but looked so worn out when I returned. He had survived on fruit snacks and crackers and canned chicken. He barely left the bed, other than taking the dogs out. <br>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvVUN9PRX4xlD8Md2mvkyBISUb_iYe6odoVrluLEAiAOAde8nqJXF8btp3RVO_xm2p0nfLR2uSBUAraZ_TqZTKNM5KRLe0UvW93pY3GnXB2bZdPL-qBX_Q-A2Csg13jVJihlxAr8jNAA2N/s640/blogger-image-799647283.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvVUN9PRX4xlD8Md2mvkyBISUb_iYe6odoVrluLEAiAOAde8nqJXF8btp3RVO_xm2p0nfLR2uSBUAraZ_TqZTKNM5KRLe0UvW93pY3GnXB2bZdPL-qBX_Q-A2Csg13jVJihlxAr8jNAA2N/s640/blogger-image-799647283.jpg"></a></div>(Chicago)<br><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAvEXyUUxOWPZRIRWxorWtppxq2MIfg6DGX_ZshwPKuqDg6-P3M6io5_1848GbmJyi5zIzlMgYm2vmpJ8jrE4x07TXeJ_Q-Wy9AV4iTK2bOZok6vWndxB6aYK6ZNMFyvBCf29H7wNJde_M/s640/blogger-image-2079809799.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAvEXyUUxOWPZRIRWxorWtppxq2MIfg6DGX_ZshwPKuqDg6-P3M6io5_1848GbmJyi5zIzlMgYm2vmpJ8jrE4x07TXeJ_Q-Wy9AV4iTK2bOZok6vWndxB6aYK6ZNMFyvBCf29H7wNJde_M/s640/blogger-image-2079809799.jpg"></a></div>(The pups stayed by him the whole week)</div><div><br>
He's still in considerable pain. He has near constant nerve pain that he describes as deep inside his eye socket. He crusted and peeled early on. He had pink spots everywhere those blisters had been and now they are starting to even out to his normal skin tone. And he's sore. Fatigued. He still has headaches all day long. But it's slowly getting better. He has managed to drag himself to class, after he was no longer contagious, and even made it to vote (they were able to come out to the car to let him vote...yay accessibility!). But man, this has been such a long few weeks for him and may continue a bit longer. Fingers crossed the nerve pain it doesn't go months. <br>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibVKPYJ5nzGWT0Tb7otTeCDiSUG6tJTlQdktLNQ7fCmUmgrBSA59V8KWQd7yl25BV6HcV-yyjLajvGVsHkYcVXwptijFCSqE8Vgw8zATvZTR2uUwL785twnSSc3N3NiQC-T4xBfhaoY7vz/s640/blogger-image--1912964689.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibVKPYJ5nzGWT0Tb7otTeCDiSUG6tJTlQdktLNQ7fCmUmgrBSA59V8KWQd7yl25BV6HcV-yyjLajvGVsHkYcVXwptijFCSqE8Vgw8zATvZTR2uUwL785twnSSc3N3NiQC-T4xBfhaoY7vz/s640/blogger-image--1912964689.jpg"></a></div>(He's showing his good side on Election Day. The sunglasses help disguise his eye area that has been raw and painful)</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglBPEt1Cs25k7A6CiqDTHh-pNkJI98QKE1EbTHZ1iFPTI3KNTFKC5qeaCzjj-hUucbHDqYwtNWNNRFiVYCQkIRu9mkEeIht5NbQBsKHESyvrKFQuLBOpyBVdVLUCFTleAZE8eXmtwHNA4m/s640/blogger-image--891729241.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglBPEt1Cs25k7A6CiqDTHh-pNkJI98QKE1EbTHZ1iFPTI3KNTFKC5qeaCzjj-hUucbHDqYwtNWNNRFiVYCQkIRu9mkEeIht5NbQBsKHESyvrKFQuLBOpyBVdVLUCFTleAZE8eXmtwHNA4m/s640/blogger-image--891729241.jpg"></a></div>(This is 1000x better then it was! He couldn't open the affected eye for 2 weeks and the whole right side was completely raw. Now it's more the nerve pain that won't subside). </div><div><br><br></div><div>
Taking off. Landing. <br><br>
All of these old-new experiences are so fresh and scary. Not because I haven't done them before. Not because we are afraid of the flight. But because this new life is a destination unfamiliar. Not as the new Jenny or Wil 2.0. Not with the new circumstances that make up our daily life or the realizations of things that may be out of reach forever post cancer. It's just we seem to have no map, other than just a grid piece or two, ahead to guide our steps. In fact, often, we feel like our total distance we can plan out is as far away as the next oncology appointment. The distance is starting to lengthen, but life is still lived a few months out. And then...life takes us down some more unexpected ER visits...and back to a feeling, a sense of urgency and fear, that we know too well.<br>
<br><br>
I'm not certain that will ever change. Just as the feeling in my stomach, as the plane lifts off the ground, defying gravity, will always happen...the acceleration, rock and sway, that is but a normal part of takeoff...will happen. The turbulence, bumps. We will hold our breath, lean back into the headrest, engage our bodies in the defiance, and take off anyway. <br>
<br><br>
I guess that's what we've been doing this whole time anyway.<br>
<br><br>
Much Love. </div>Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com0tag:blogger.com,1999:blog-88787859977003072.post-2848185760185726402016-10-19T10:25:00.001-05:002016-10-19T23:30:16.175-05:00Well WaterJenny here. <div><br></div><div>As I heard our combined footsteps down the long clinic corridor yesterday, the additional intermittent click of his cane in between, it struck me how different this walk was a year ago. </div><div><br></div><div>As we walked through sitting areas on our way to his oncologist's waiting room, I realized I now pay more attention to the surroundings, even as I sometimes try not to look too far into my mind's wondering about each person I see there. The gift: I don't solely think about Wil's life and death each second now. </div><div><br></div><div>If you want to see a truly diverse cross section of America, and a true community, visit a cancer center. Every face, age, health, ability. I was reminded that this disease doesn't discriminate and that when everything is stripped away...when you are melted down...we all just want the most simple things from this life. Period. And the hardest truth for most of us--there are no guarantees. </div><div><br></div><div>I felt very present with the reality that, at this particular moment, we have been so unlucky and lucky all at the same time. Every hurdle, tear, worry, complication...we are still moving. And that's more than I can and will ever be able to understand...how some are on the other side of the same cancer coin from us, for no particular reason at all. </div><div><br></div><div>Wil called "heads" 3 years ago and we're wobbling and landing. Luck of the call. Luck of the toss. Luck of all the factors in between. </div><div><br></div><div>Wil celebrated his Day +731 on October 9, 2016.</div><div><br></div><div>We hit the road to see one of my sisters, and her fam, who recently moved to the Ozarks area of Missouri. </div><div><br></div><div>Celebration mode. </div><div><br></div><div>With or without tests and labs yet, we still marked the day with appreciation. Two years in the making...every day, plus a leap day, accounted for in sweat, laughter, arguments, tears, and reverence for that spinning coin. </div><div><br></div><div>We arrived in Missouri early a.m. on the 9th, dogs in tow, having officially toasted in the next year of this journey with Coke Zero, trip snacks, and miles of road. </div><div><br></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We enjoyed all the small town delights over the next few days: church, hayride, bonfire, nature...time with limited cell phone reception...and Ozark well water.</span></div><div><br></div><div>I grew up on well water. Cold. Crisp. Straight from the red handled pump that connected to <span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">underground aquifers.</span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> Up from MN ground. No filter. Naturally occurring. Life sustaining. </span></div><div><br></div><div>Being there in MO...Spending time with someone I have a deep shared past...playing with her little, our niece...the well water ran more than just ground deep...it was soul deep. Soul quenching. </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhikzOCPIquDzjZYjLCX-O4SpyODc9ganShyphenhyphenx4U7qq6Eno-CvsOxd47CAvuxsjXk5W4ZO_A4d2kLR1FSyME213N-NtcghLkyIHbY-onpfccWwflUnRwOw6k7-f41iEZmsghaAnqmwavei7B/s640/blogger-image--1636323139.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhikzOCPIquDzjZYjLCX-O4SpyODc9ganShyphenhyphenx4U7qq6Eno-CvsOxd47CAvuxsjXk5W4ZO_A4d2kLR1FSyME213N-NtcghLkyIHbY-onpfccWwflUnRwOw6k7-f41iEZmsghaAnqmwavei7B/s640/blogger-image--1636323139.jpg"></a></div></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAVh5eNXG8YIB6ifiHAPTVQS7CYycnqGoAQ9wnShNQLNQ1x7VjJ2tN1hLf0i6Rhj5ss0EYOgH0bkJfInv-7yJ2JCOkea4MGpI-vJLIBVEwdP7K-mb91NYPD_TEE63gA4NMAeOWQQ8r_p13/s640/blogger-image--942401714.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAVh5eNXG8YIB6ifiHAPTVQS7CYycnqGoAQ9wnShNQLNQ1x7VjJ2tN1hLf0i6Rhj5ss0EYOgH0bkJfInv-7yJ2JCOkea4MGpI-vJLIBVEwdP7K-mb91NYPD_TEE63gA4NMAeOWQQ8r_p13/s640/blogger-image--942401714.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFYU4LpmKzgiH93m7REX2uGBTc6Wp52pmQd5mexPVVR9wE5augzmChifienc5pNTKuiVsIVV6W9WfUf09zYYt9_tjZSNU6N1NyQVb3ijwrHATMG9-prtJU3xNUg5Ey2Df7B6Dedn0UVq5z/s640/blogger-image--2129947996.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFYU4LpmKzgiH93m7REX2uGBTc6Wp52pmQd5mexPVVR9wE5augzmChifienc5pNTKuiVsIVV6W9WfUf09zYYt9_tjZSNU6N1NyQVb3ijwrHATMG9-prtJU3xNUg5Ey2Df7B6Dedn0UVq5z/s640/blogger-image--2129947996.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJWAdWNjyXfwG7Fd5XeIEdhnspZ1Gs7PemtoR4KowIE9Bf48sB5_IK6t_WsQheft0DU5XYsV0XwAhA62LLqYqW0wA84Pwox-ps6CxcF9hUV3Vo3Cj4VolYkSkEF53RQ9KRv9_RmPweJXx5/s640/blogger-image--1109442313.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJWAdWNjyXfwG7Fd5XeIEdhnspZ1Gs7PemtoR4KowIE9Bf48sB5_IK6t_WsQheft0DU5XYsV0XwAhA62LLqYqW0wA84Pwox-ps6CxcF9hUV3Vo3Cj4VolYkSkEF53RQ9KRv9_RmPweJXx5/s640/blogger-image--1109442313.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjB_El7W8pSv6sKNrCHo8MgSosqGeER_oKlFFN3ldw-EjPu0Mm_W6LlELnKi8Gg-got1mLyxFF_o57R1Z_Bv-Ux3xBJ1SqadNipMbrnjd7WY5gu4Y3zrulvg8JzOaj8PJouJHwQ1skQQKsB/s640/blogger-image-2003570390.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjB_El7W8pSv6sKNrCHo8MgSosqGeER_oKlFFN3ldw-EjPu0Mm_W6LlELnKi8Gg-got1mLyxFF_o57R1Z_Bv-Ux3xBJ1SqadNipMbrnjd7WY5gu4Y3zrulvg8JzOaj8PJouJHwQ1skQQKsB/s640/blogger-image-2003570390.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitInOjE34Jz3pv0j5bZaiBmgnCnfkkFDf967hk2dCCjb1vWvIM9tbzLAzFr0NWY44cDJaE8FXbQDhTDD0rS8WSo7IEgOBUhidovDb679ltvEiDahUQejP5o1z0U8K6_lgCwsuxqBty5dGG/s640/blogger-image-899696579.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitInOjE34Jz3pv0j5bZaiBmgnCnfkkFDf967hk2dCCjb1vWvIM9tbzLAzFr0NWY44cDJaE8FXbQDhTDD0rS8WSo7IEgOBUhidovDb679ltvEiDahUQejP5o1z0U8K6_lgCwsuxqBty5dGG/s640/blogger-image-899696579.jpg"></a></div></div></div><div><br></div><div>We came back to Fort Worth last week and headed into all of Wil's anniversary tests, scans, blood work, PFT's, and all his baby immunizations (no live vaccinations ever again though). He was very happy that no BMA was on order this time around. (In fact, if things continue to look well he may never need one again). </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7rrfJ7IkhnQrePKmeVrbsxtUd-7EC3mc4EgBs88zzklBPK7t69KIQFVc35LHPXoJIgNvSxQB3MpmeOuzXpqssqIdwG0iVIatYAWNUYzeCVrsWYN_Vj5xK8t3EaSI8GOSlkzhfFpYyeMjw/s640/blogger-image--1402076096.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7rrfJ7IkhnQrePKmeVrbsxtUd-7EC3mc4EgBs88zzklBPK7t69KIQFVc35LHPXoJIgNvSxQB3MpmeOuzXpqssqIdwG0iVIatYAWNUYzeCVrsWYN_Vj5xK8t3EaSI8GOSlkzhfFpYyeMjw/s640/blogger-image--1402076096.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL2KWKiowYRoho7yrzHkhDKoD-tRRtikEz37iHpbWajme9h_7Stl6Oh_yKTbMfx_dvEGbT8vyTIBLUGn5Uf1jFDAirhd6TAw_IWlwedUVugOqlLFK33BYCRhXPkw9EdI70X0W8xz0_WbfW/s640/blogger-image-1133628132.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL2KWKiowYRoho7yrzHkhDKoD-tRRtikEz37iHpbWajme9h_7Stl6Oh_yKTbMfx_dvEGbT8vyTIBLUGn5Uf1jFDAirhd6TAw_IWlwedUVugOqlLFK33BYCRhXPkw9EdI70X0W8xz0_WbfW/s640/blogger-image-1133628132.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvANkaGj9RgJch4dotto38TfASyD2tBulB0z_AVn6FdhEmV71Xy9mNa7J11r6moBtRFuWALtlIDOFquLim15SRh8ubGQEafp4MJrdyUquTVW3HIH9wT0qfGU7jqzPYhpYqBwb2I7x8XK-b/s640/blogger-image-1865039918.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvANkaGj9RgJch4dotto38TfASyD2tBulB0z_AVn6FdhEmV71Xy9mNa7J11r6moBtRFuWALtlIDOFquLim15SRh8ubGQEafp4MJrdyUquTVW3HIH9wT0qfGU7jqzPYhpYqBwb2I7x8XK-b/s640/blogger-image-1865039918.jpg"></a></div><br></div><div>I had been off work all week, enjoying much needed couch time with my little family, in between some private practice and the doctor appointments. Going to drive-in movies. <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Watching Sunday football. Finally putting up curtains...it was a great week because 99% of the time I don't get tired of this guy ;-)</span></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFE424F_WHM-NWayCNPRZ6_EhqgdfSoxa_1_1waON-LbpRdiBLJOHWWAJW9GfczEDfScygvPp3OB24ZsNBhCoN_sxG5eCGNAfY-LdhbmG4Xz1PYrZSsReMfkYMNGthYYte2s8h_av-6ptL/s640/blogger-image-1145848461.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFE424F_WHM-NWayCNPRZ6_EhqgdfSoxa_1_1waON-LbpRdiBLJOHWWAJW9GfczEDfScygvPp3OB24ZsNBhCoN_sxG5eCGNAfY-LdhbmG4Xz1PYrZSsReMfkYMNGthYYte2s8h_av-6ptL/s640/blogger-image-1145848461.jpg"></a></div><br></div><div>This anniversary walk has been quiet this year by choice...maybe not Wil's, but certainly mine. Less exasperation. More normal. Normal. Yes. Just. Normal. </div><div><br></div><div>Yesterday we made the rounds at UTSW.</div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">With Wil's mash up of anniversary tests, scans, blood work, etc complete last week, today was about visiting our cancer wells and hoping to get more fresh, sustaining news. </span></div><div><br></div><div>First we visited the BMT floor. Then clinic. </div><div><br></div><div>Side note: We love these people. Some we had not seen for 2 years. He's almost unrecognizable--upright, smiling. Hugs all around. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkng2vr33IjgyDi1qQxJjoiz_eBfA8A3oujuB58fPhcdr-8OS_QEsjaG2Q-2tEnsefbsSMSiHnUx656tN9u4O5kxwN3MZKupPtqXYFGfNTiGPyRk-BsexptBcPfvEBZpOrhUmEKUBnfUlI/s640/blogger-image--667148294.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkng2vr33IjgyDi1qQxJjoiz_eBfA8A3oujuB58fPhcdr-8OS_QEsjaG2Q-2tEnsefbsSMSiHnUx656tN9u4O5kxwN3MZKupPtqXYFGfNTiGPyRk-BsexptBcPfvEBZpOrhUmEKUBnfUlI/s640/blogger-image--667148294.jpg"></a></div><br></div><div>This day. EVERY day. Is a shared story. A shared victory. With these people. And no one understands the absolute miracle of the coin toss, the wonder, the hard work...like these friends. Mutual positive regard, all around. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiboTEmm_873r-j3HyznAfTlsJR3z1qbNspUk5lj22tx3V4V_dNSGuWizAeg7oEKrBPaGKJri907qrYhqc0Op99lmQuZSg96T3f9HuPVP5xKjFhQAwlZVZbAatVv7qBvZxnFvMakRgUBMOO/s640/blogger-image--1788519200.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiboTEmm_873r-j3HyznAfTlsJR3z1qbNspUk5lj22tx3V4V_dNSGuWizAeg7oEKrBPaGKJri907qrYhqc0Op99lmQuZSg96T3f9HuPVP5xKjFhQAwlZVZbAatVv7qBvZxnFvMakRgUBMOO/s640/blogger-image--1788519200.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYFXEJMsd9Hev6mMScDVpLWvMYwi0-8pA258S0QkUYJZqMrJU-0R_vJvgwWxVZdtoAeSLJ3WD91-J9FLtB17ucJ0cr1j12pbRQHdcYpY9MmpJaXLNsMKVz9436UrCFztQxdLWegbdorTfi/s640/blogger-image--1084563320.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYFXEJMsd9Hev6mMScDVpLWvMYwi0-8pA258S0QkUYJZqMrJU-0R_vJvgwWxVZdtoAeSLJ3WD91-J9FLtB17ucJ0cr1j12pbRQHdcYpY9MmpJaXLNsMKVz9436UrCFztQxdLWegbdorTfi/s640/blogger-image--1084563320.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipqX04Vqd40o_gcAqF4C2rWUJ4kkcgSufi55iI9ZoEyKHblM00vYADN1Egh_l-iXOwNsY5T2TrYKW2I1vWaGvfSXTiaGc9lvlHD9WFwz_Qev728aXNYSyLHKinbMcOmGvBerZWX9Vy4J6Z/s640/blogger-image--863222392.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipqX04Vqd40o_gcAqF4C2rWUJ4kkcgSufi55iI9ZoEyKHblM00vYADN1Egh_l-iXOwNsY5T2TrYKW2I1vWaGvfSXTiaGc9lvlHD9WFwz_Qev728aXNYSyLHKinbMcOmGvBerZWX9Vy4J6Z/s640/blogger-image--863222392.jpg"></a></div><br></div><div>The results were all in (other than the test to see what percentage he is of donor cells-- although based on the rest of his work up, it's unlikely that won't look great too), and...</div><div><br></div><div>All is WELL. </div><div><br></div><div>Counts continue to improve and, even if they aren't all in completely "normal" ranges, they are good. He won't even see his oncologist until April 2017. Six months. </div><div><br></div><div>It's still the days that count. Still the people in it that are our spring. And we count them all. Today Day +741. After a day yesterday that filled our souls to the brim. </div><div><br></div><div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheH-Gi2DBWX8b26TjCWEYnIa-UTwCklqc1eniwmvFXP2ajUUxVEiMMIg5Yt97HnUFwLuWEtqrDlxGbcvZemkcygVWDxAbMuQ3lFQAVn1uy9Tfx4bRhPD9v9geylyqHs5GVtmvjVtP2ZCva/s640/blogger-image--1148254321.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheH-Gi2DBWX8b26TjCWEYnIa-UTwCklqc1eniwmvFXP2ajUUxVEiMMIg5Yt97HnUFwLuWEtqrDlxGbcvZemkcygVWDxAbMuQ3lFQAVn1uy9Tfx4bRhPD9v9geylyqHs5GVtmvjVtP2ZCva/s640/blogger-image--1148254321.jpg"></a></div></div></div><div><br></div><div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzVFMhLqqS9tu5514blzZ61znSRZ9waKC7ACD7Q-541TjLMXaJuCnBE6o-ZPWPm4gzv-fa6CnxUp9qNbYmtS3NUdFRo5dAqD4WV768pk5p0d_muqORRo6uXqUyvsSQWJgRVmmLhEx1UQvM/s640/blogger-image-2088635753.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzVFMhLqqS9tu5514blzZ61znSRZ9waKC7ACD7Q-541TjLMXaJuCnBE6o-ZPWPm4gzv-fa6CnxUp9qNbYmtS3NUdFRo5dAqD4WV768pk5p0d_muqORRo6uXqUyvsSQWJgRVmmLhEx1UQvM/s640/blogger-image-2088635753.jpg"></a></div><br></div><br></div><div>Well. He is well. The aquifer, deep. </div><div><br></div><div>Much Love. </div>Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com3tag:blogger.com,1999:blog-88787859977003072.post-37539866435679234232016-09-20T12:28:00.001-05:002016-09-20T13:16:04.687-05:00Love LettersJenny here.<br />
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2 years ago today I watched Wil break down in tears at the news of his failure to graft. Last night I knew what today marked. </div>
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Even so, as <span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">I opened my TimeHop, still in bed, the mix of news struck me for today: getting my Civic 3 years ago, celebrating Violet's birthday last year, and the link to my blog entry about the news of the graft. </span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">I don't often reread the blogs, honestly. Because they take me right back there and I remember, in almost real time, the overwhelming nature of it all. Sometimes, the Jenny of then, really makes the Jenny of now still cry. </span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">This life. What a wild ride. </span></div>
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Contrast. 2 days ago shopping with Wil. His first new shoes since before cancer. His feet, so tender and swollen from med side effects and his neuropathy. Still. The kind assistant manager, on the floor, helping him ease into new shoes. </div>
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His smile says it all. </div>
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Him. Still concerned about me and us. "They are expensive. I shouldn't get them." Yes, Wil. You should. Yes. We aren't still living to NOT be living and getting new shoes. </div>
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But 2 years ago he was equally concerned about everyone but him. Some things are just constants. </div>
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<a href="https://www.blogger.com/goog_1654034354"><br /></a></div>
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<a href="http://fightthebigfight.blogspot.com/2014/09/worth.html?spref=fb&m=1">http://fightthebigfight.blogspot.com/2014/09/worth.html?spref=fb&m=1</a></div>
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So I read the blog. I cry. I'm stunned. He is still here. I read it to him. A blog he had never heard because he also doesn't go back to those dark corners often. Most of them, he has never read. <span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">And as I read aloud, I remember how important writing was to me then. And how I just can't seem to sit and write now even though I'd love to do so. </span></div>
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I guess this part of things seems more personal and private? No, I'm not sure that is truth. I was never more vulnerable. What was different was I didn't have him 2 years ago. His body, beaten, bruised, he was barely there because he was held together by meds and blood products, too nauseated to eat, to tired to talk...</div>
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I wanted to tell him so many things then. Yet I knew he would feel more guilt and shame and regret if I told him how scared I was that he'd die. I. KNEW. He would take all my grief and desperation as his failure. Just like he did the graft. I couldn't give him that to hold. </div>
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This is the story of the caregiver. Pushing your feelings aside and saying "I'm</div>
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Here. I'm not backing down. I've got this. And I've got you." </div>
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As you disappear yourself. </div>
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It's worth it. I'd never change it. I see myself differently. I embody a new woman who no longer needs as much. Who values real more than ever. Who doesn't apologize for being herself anymore. It has come at costs and pain. I won't let her down by shrinking into shoulds or relationships that aren't healthy. I love her more than that now. </div>
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See the caregivers. Hold them when they say they are OK. Bother them when you feel your most uncomfortable. Because they are holding it all to hold the hand of their person. </div>
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Today, this summer...2016. I'm</div>
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Not writing as much and can't. Instead, I'm living out our love story in real time. I'm living out my grief through growing pains of living this new life. </div>
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Two years ago, those blog entries. They were my love letters to Wil. They were things I couldn't say out loud or in room 813. The things I knew I wanted him to hear, if he lived, but couldn't burden him with. And here we are. Day +712. Today I read him that love letter. And we cried. And then ate eggs, bacon, toast, and drank an extra cup of coffee. Unpacked a few more boxes. Walked the dogs. Paid bills. </div>
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We wrote a living love letter, together this time, through tiny normals. </div>
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We lived. </div>
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Much love. </div>
Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com0tag:blogger.com,1999:blog-88787859977003072.post-74018841803608861792016-08-20T17:46:00.001-05:002016-08-20T18:04:10.333-05:00the SWAY
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<span style="font-family: Calibri;">Jenny here.<span style="mso-spacerun: yes;"> </span>And its
Day +681.<span style="mso-spacerun: yes;"> </span>And it’s the 2<sup><span style="font-size: x-small;">nd</span></sup>
anniversary of Wil’s first stem cell transplant, that didn’t engraft.<span style="mso-spacerun: yes;"> </span>It’s the strangest cocktail mix of feels; It’s
a smooth glass of hope with a double splash of how-the-hell-did-we-make-it-this-far?<span style="mso-spacerun: yes;"> </span>In some 50 days we will reach year two of the
transplant that DID work.<span style="mso-spacerun: yes;"> </span>I think back to
that time…all those months that dragged on…Now the days seem to fly by.</span></div>
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<span style="font-family: Calibri;">Summer is nearly over and, man, have we been enjoying the
electric bills, in our new smaller life, as Texas heated up to simmering 102-104
degrees a few weeks ago. I wish I could say that everything had a place and was
in its place at the apartment…but…we are slowly chipping away.<span style="mso-spacerun: yes;"> </span>We are installing shelves above doors for
extra storage, still scanning and shredding hard copies of paperwork…still
figuring out where things work best.<span style="mso-spacerun: yes;"> </span>But
it’s happening and we really feel settled, in the midst of some organized
clutter.<span style="mso-spacerun: yes;"> </span>The dogs are doing FABULOUS and
seem to be more chill than they ever were in the house.<span style="mso-spacerun: yes;"> </span>I attribute it to the fact they can lay in
one spot and see/hear us at almost every corner of the place without lifting a
head.<span style="mso-spacerun: yes;"> </span>They get more time with Wil, on
short little walks throughout the day, and they love the easiness of life on
our little couch.<span style="mso-spacerun: yes;"> </span></span></div><div style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;"><span style="mso-spacerun: yes;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhblt1rDk2n7PZsZW-WC5XLFvN4O2onSkzWwZRNEzzIauiNCLjqH3e6w63a27iqepwcK7vRAAecg0ih8v2XLPuaKr49HFxjSB5myJwPc00XHnreXXpYFHQ-fxFEaSaZ7o0zACJ-Tpb3c4kg/s640/blogger-image--293961886.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhblt1rDk2n7PZsZW-WC5XLFvN4O2onSkzWwZRNEzzIauiNCLjqH3e6w63a27iqepwcK7vRAAecg0ih8v2XLPuaKr49HFxjSB5myJwPc00XHnreXXpYFHQ-fxFEaSaZ7o0zACJ-Tpb3c4kg/s640/blogger-image--293961886.jpg"></a></div><br></span></span></div><div style="margin: 0in 0in 10pt;"><font face="Calibri">I'm also loving that Wil can help with some things. He's even been more inclined to cook or help manage things around the house. And it's great that he can and that its at his pace. I know he worries about me working a lot...but he's still recovering and I feel settled knowing he's doing just that!</font></div>
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<span style="font-family: Calibri;">The summer has been busy too.<span style="mso-spacerun: yes;"> </span>Wil finished his second class, post-transplant,
and feels like he has a new degree plan in mind now.<span style="mso-spacerun: yes;"> </span>He worked really hard and got an “A”!<span style="mso-spacerun: yes;"> </span>I have been working like crazy, trying to get
back up to speed at my private practice after hanging on for dear life for a
few years.<span style="mso-spacerun: yes;"> </span>I’m excited to finally have
the time/mental capacity/want to update paperwork, set up an electronic
management system, and even consider growing my practice in the coming
year.<span style="mso-spacerun: yes;"> </span>I truly have not had any desire or
energy to consider such a task before this month.<span style="mso-spacerun: yes;"> </span>And that, in and of itself, feels…normal-ish.</span></div>
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<span style="font-family: Calibri;">Yet the sway.<span style="mso-spacerun: yes;">
</span>Normal-ish what?</span></div>
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<span style="font-family: Calibri;">I am not sure I fully feel awake in my own life.<span style="mso-spacerun: yes;"> </span>For the first year of cancer, I felt lost on
planet leukemia, but it became the new reality.<span style="mso-spacerun: yes;">
</span>I figured it out and there was no choice but to keep walking and do a bang up job of it. <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Calibri;">Now I seem to sway.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Calibri;">Between what was, what was after that, and what is now…or
could be.</span></div>
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<span style="font-family: Calibri;">Wil is about the same.<span style="mso-spacerun: yes;">
</span>Chronic pain and a heart of pure joy most days.<span style="mso-spacerun: yes;"> </span>His mobility has been helped by the cane and
he has embraced that assistance.<span style="mso-spacerun: yes;"> </span>It
helps him balance and avoid falls.<span style="mso-spacerun: yes;"> </span>His new
med cocktail for the pain management seems to be helping him manage better
too.<span style="mso-spacerun: yes;"> </span>Little improvements are such a big
thing.</span></div>
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<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">At his last doctor appointment, his white count had dropped
below normal levels.<span style="mso-spacerun: yes;"> </span>Now, most of his
counts are still in the low average or slightly below normal ranges.<span style="mso-spacerun: yes;"> </span>But his WBC had been WNL for quite some
time.<span style="mso-spacerun: yes;"> </span>The PA must have seen my face, and
interjected with “the body can do weird things, no need to worry just yet.”</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Sway.<span style="mso-spacerun: yes;"> </span></span></div><div style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">Familiar waves
of feelings toss me around.</span><span style="font-family: Calibri;"> </span><span style="font-family: Calibri;">For all the
normal-ish moments we’ve entertained this summer, it’s a punch to the gut to
feel an instantaneous fear I'm that is so familiar</span><span style="font-family: Calibri;">.</span><span style="font-family: Calibri;"> </span><span style="font-family: Calibri;">His oncologist
is not worried, or not enough, to schedule any additional tests or
appointments.</span><span style="font-family: Calibri;"> </span><span style="font-family: Calibri;">So I know that’s a great
sign.</span><span style="font-family: Calibri;"> </span><span style="font-family: Calibri;">But my little outlier, who was
atypical before diagnosis…it’s also hard not to move back into a space of
worry.</span><span style="font-family: Calibri;"> </span><span style="font-family: Calibri;">Every bump.</span><span style="font-family: Calibri;"> </span><span style="font-family: Calibri;">Every slight change.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Side note:<span style="mso-spacerun: yes;"> </span>As much as
life is slow and easy right now, we still have to check him for GvHD every
day.<span style="mso-spacerun: yes;"> </span>And GvHD at this point in time, is
different than in the beginning months after transplant.<span style="mso-spacerun: yes;"> </span>If you have had acute GvHD (as Wil did) you
are more likely to develop chronic.<span style="mso-spacerun: yes;"> </span>It’s
the thickening and color change of skin.<span style="mso-spacerun: yes;">
</span>It’s joint pain and stiffness.<span style="mso-spacerun: yes;"> </span>It’s
dry eyes.<span style="mso-spacerun: yes;"> </span>Fatigue.<span style="mso-spacerun: yes;"> </span>Or changes in breathing.<span style="mso-spacerun: yes;"> </span>These, among other subtle symptoms.<span style="mso-spacerun: yes;"> </span>So yes, go out and live.<span style="mso-spacerun: yes;"> </span>Be free.<span style="mso-spacerun: yes;">
</span>But not too free.<span style="mso-spacerun: yes;"> </span>Remember that
every day you have to monitor yourself.<span style="mso-spacerun: yes;"> </span>And
keep a careful eye on any changes.<span style="mso-spacerun: yes;"> </span>It’s
the sway, the two sides you bounce between daily, in life post cancer.<span style="mso-spacerun: yes;"> </span>Cancer still influences our life at every
turn. Even when life is normal-ish.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">October will be his second anniversary.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">I have a co-worker who’s little girl had a stem cell
transplant and just celebrated her 5<sup><span style="font-size: x-small;">th</span></sup>.<span style="mso-spacerun: yes;"> </span>I almost laughed <span style="mso-spacerun: yes;"> </span>at myself in even spitting out the words, “Do
you feel relieved?” </span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">No.<span style="mso-spacerun: yes;"> </span>There is no relief
in worry, just bigger expanses, larger waves, more gentle sways.<span style="mso-spacerun: yes;"> </span>There is no eliminating the experiences or
scars we are left, just a gradual, and greater tolerating of life as it is, and
how it will probably continue to be.<span style="mso-spacerun: yes;"> </span></span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;">So yes, we are alive. We are OK. I am still quiet, mostly, as I am rocked back and forth by the experiences. </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">But we dream now.<span style="mso-spacerun: yes;"> </span>And
oscillate.<span style="mso-spacerun: yes;"> </span>We move in and out of the
anxiety with less effort (most days).<span style="mso-spacerun: yes;"> </span>We stay in
the graces of moments with more mastery, and rest in the simplicity of the now when
we can.<span style="mso-spacerun: yes;"> </span>More careworn than
airy…still…it’s a rhythm…and it’s our home.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> He's my home. Which is all I truly need. </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Much Love.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"> </span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"> </span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"> </span></div>
Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com0tag:blogger.com,1999:blog-88787859977003072.post-65709352282129334542016-07-16T22:12:00.003-05:002016-07-16T23:13:16.820-05:00Seen
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Jenny here.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Often times, some of the most important people in your life,
are not determined by length of relationship or genealogy.<span style="mso-spacerun: yes;"> </span>Sometimes, you just know when you meet
someone for the first time that you will continue to know and love them forever
in one way or another.<span style="mso-spacerun: yes;"> </span>Time can pass…but
you know all the sayings…it’s like nothing, or at least the essential things,
has changed.<span style="mso-spacerun: yes;"> </span></span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"><br></span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Back to that in moment…</span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><br></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">First the Wil updates.<span style="mso-spacerun: yes;">
</span>He saw his internist and audio doctors last week.<span style="mso-spacerun: yes;"> </span>He still has some hearing loss that they will
continue to monitor, and continuing wax build up…so…I guess he’s off the hook,
for now, when he says he can’t hear me ;)<span style="mso-spacerun: yes;">
</span>At his internist, they added a new med to his neuropathy management
cocktail—Cymbalta—which I am very familiar with in the mental health side of
things, but until a friend mentioned it for pain management, I wasn’t aware it
was being used a lot now for nerve pain as well.<span style="mso-spacerun: yes;"> </span>Cross your fingers…it will be about 6 weeks
of taking it before Wil can determine if it’s helping.<span style="mso-spacerun: yes;"> </span>He will see his BMT team in August for new
blood work.<span style="mso-spacerun: yes;"> </span>Until then, it’s just keep
living!<span style="mso-spacerun: yes;"> </span>We have about 5-6 community events
on our radar for the fall…making up for lost time…and we LOVE Fort Worth (and MELT ice cream! See pic below).<span style="mso-spacerun: yes;"> </span>Wil has decided he needs a pic of a Pokémon
on our dog’s head, since he has been playing Pokémon Go (anyone else already
weary of the constant discussion of this game?<span style="mso-spacerun: yes;">
</span>I finally downloaded it because it’s entering discussions in therapy
sessions…YESSSSS…so, solely for research purposes and so I can have a competent
conversation with my husband now, I am playing (sigh, lol).<span style="mso-spacerun: yes;"> </span>So, keep on the lookout for “Pokémon-on-our-dog’s-head”
posts if he achieves his wish.<span style="mso-spacerun: yes;"> </span>#LifeGoal!<span style="mso-spacerun: yes;"> </span>I will admit, it’s an interesting concept and
changes your view of the places you visit.<span style="mso-spacerun: yes;">
</span>You almost feel like you are seeing them for the first time, and in
fact, landmark wise, sometimes I am! </span></div><div style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPFEoP1gWNIlm1ngsF5Iqv6m2YH3FZY1EqtPVWsCpOr99Kg-tLmWmrCI0_6vQzl6iDCYYDqCQ6hYCpNSUZHy8aNzzYEPJoJGdtdAgSutJuYciPYIHTuu7N9Ntfd7B0OidfNXxjs_skckB3/s640/blogger-image-1823989786.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPFEoP1gWNIlm1ngsF5Iqv6m2YH3FZY1EqtPVWsCpOr99Kg-tLmWmrCI0_6vQzl6iDCYYDqCQ6hYCpNSUZHy8aNzzYEPJoJGdtdAgSutJuYciPYIHTuu7N9Ntfd7B0OidfNXxjs_skckB3/s640/blogger-image-1823989786.jpg"></a></div><br></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">SEEN.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">So often, I think we miss the mark with each other, in
relationships, not because we don’t HEAR each other.<span style="mso-spacerun: yes;"> </span>No, I think we hear at least partially, but
are already formulating our rebuttal by the time the other person has finished
their last word.<span style="mso-spacerun: yes;"> </span>Sure, there are times
when people don’t listen at all.<span style="mso-spacerun: yes;"> </span>Yet,
more times in my own life, and witnessing relationships in my work, people
hear, yet fail to SEE.<span style="mso-spacerun: yes;"> </span></span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Our world seems to be screaming it right now too.<span style="mso-spacerun: yes;"> </span></span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"><br></span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">We all ask to be heard.<span style="mso-spacerun: yes;">
</span>Isn’t that what everyone is saying right now?<span style="mso-spacerun: yes;"> </span>Please HEAR me?<span style="mso-spacerun: yes;"> </span>And believe me, I think we all need to do
that…But do you know what is better than someone hearing you?<span style="mso-spacerun: yes;"> </span>It’s someone holding space for you. It’s
someone looking at you, warts and all, and you knowing….they agree to see the essential
core.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>And you really knowing and feeling…that you
make sense to them.<span style="mso-spacerun: yes;"> </span>That you are SEEN.<span style="mso-spacerun: yes;"> </span>This.<span style="mso-spacerun: yes;">
</span>It transcends any opinion.<span style="mso-spacerun: yes;"> </span>It
doesn’t give advice or try to solve everything.<span style="mso-spacerun: yes;">
</span>Still…being seen achieves so much more than being heard offers most
days.</span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><br></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">These people who can see you can seem few and far
between.<span style="mso-spacerun: yes;"> </span>But they are the ones that can
have you in quiet tears without saying a word.<span style="mso-spacerun: yes;">
</span>They help calm the inner critic and you deepen your own self-acceptance,
all without that being the objective.<span style="mso-spacerun: yes;"> </span>You
can’t hide your true feelings from them, and conversely, you don’t really want
to either.<span style="mso-spacerun: yes;"> </span>You don’t need to wear any
armor around them because they have made it clear—they love all of you—their love
is not a la carte.<span style="mso-spacerun: yes;"> </span>They can speak gentle
truths and you are better because of it.<span style="mso-spacerun: yes;">
</span>They can just sit with you in silence and you are better because of
it.<span style="mso-spacerun: yes;"> </span>And they allow you to do the
same.<span style="mso-spacerun: yes;"> </span>Because holding space for someone has
nothing to do with words, opinions, or finding common ground.<span style="mso-spacerun: yes;"> </span>It has everything to do with seeing from the
other side and letting another’s reality melt you.<span style="mso-spacerun: yes;"> </span>The act of truly seeing someone might be the
greatest form of love we can give each other.</span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><br></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">It’s not an easy one though.<span style="mso-spacerun: yes;">
</span>And I am no exception.<span style="mso-spacerun: yes;"> </span>Vulnerability,
as strength, was not a message I received as child.<span style="mso-spacerun: yes;"> </span>I think I’m not alone when I say that rules,
behavior and life choices were probably more highlighted than the skill of
being who you really are, outside of those expectations.<span style="mso-spacerun: yes;"> </span>I picked a career where I hold space for
others with ease every day…in my own life though, I prefer my vulnerabilities staying
hidden.<span style="mso-spacerun: yes;"> </span>Don’t crack to let light in.<span style="mso-spacerun: yes;"> </span>Stay strong.</span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><br></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Side note:<span style="mso-spacerun: yes;"> </span>While this
blog has been highly personal, in many ways throughout the past couple of
years, there is still so much I’ve never felt OK saying.<span style="mso-spacerun: yes;"> </span>Still so much blocked behind fear that no one
wants to hear about the even drearier hard stuff, the weaker moments, the true depths,
the days that don’t always end on a high note, unicorns wrapped up in hope and
glitter and such.<span style="mso-spacerun: yes;"> </span>I joke with Wil that I
need a secret blog-behind-the-blog.<span style="mso-spacerun: yes;">
</span>Those are the stories that have shaped me more than the ones I have openly
written about, yet they are also the ones I feel shame about too.<span style="mso-spacerun: yes;"> </span>The actual vulnerable, and not just the sort
of vulnerable (even in my own private writing it can be hard to get there).<span style="mso-spacerun: yes;"> </span>That’s my own work to do…but it helps, along
the way, to experience someone breathing in pain with you…</span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><br></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">So today, sitting across from a chosen sister, who refuses
to let me hide, I had no choice but to be seen.<span style="mso-spacerun: yes;">
</span>And it’s scary and amazing…all at the same time.<span style="mso-spacerun: yes;"> </span>I sat there, not very articulate about what a
gift it was to be there with her, with her total acceptance.<span style="mso-spacerun: yes;"> </span>Not the kind of acceptance that is just about
facts.<span style="mso-spacerun: yes;"> </span>The kind of acceptance that is acknowledgement
of worth, beyond any other detail than just being.<span style="mso-spacerun: yes;"> </span>Does that make sense?<span style="mso-spacerun: yes;"> Seen-ness as a standalone offering. I</span> hope you have felt this at least once
before yourself…because we all need more of it, and need to bestow it, in the days and weeks and
years to come.<span style="mso-spacerun: yes;"> </span></span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"><br></span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Today broke open my soul in a way I have been needing.<span style="mso-spacerun: yes;"> </span>So, thank you soul friend. <span style="mso-spacerun: yes;"> </span>I’ve always known you were an amazing friend,
but I hope you know what a rare person you are in this life—and what an example
to the world you are to me.<span style="mso-spacerun: yes;"> </span>I’m pretty
lucky to have found you.<span style="mso-spacerun: yes;"> </span>Luckier still,
to be seen by you.</span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><br></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Much love.</span></div>
Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com0tag:blogger.com,1999:blog-88787859977003072.post-11435461486596690512016-07-09T22:46:00.000-05:002016-07-09T23:07:54.300-05:00Safe<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">Jenny here.</span></div>
<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">We are moved!<span style="mso-spacerun: yes;"> </span>Our new
apartment may look like a tiny episode of Hoarders right now, but once the
boxes are unpacked, some shelving installed, and the dust settles, I am sure
our place will look great!<span style="mso-spacerun: yes;"> </span>Our initial
big move was the end of May, and we carefully unpacked and got major things and
furniture set up pretty quickly.<span style="mso-spacerun: yes;"> </span>Then
came cleaning out the guest bedroom walk in closet and garage…the last loads coming
to the apartment on June 30<sup><span style="font-size: x-small;">th</span></sup>.<span style="mso-spacerun: yes;">
</span>Ugh.<span style="mso-spacerun: yes;"> </span>I guess it’s near impossible
to NOT have all those last things add up to a mix-match of boxes and things to
go through later…right?<span style="mso-spacerun: yes;"> </span>Or am I the only
one?<span style="mso-spacerun: yes;"> </span>So give us a month and we will be
ready for company, curtains up and all.</span></div>
<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">Wil and I have been in a weird place lately, like as in
trying to understand and tolerate each other.<span style="mso-spacerun: yes;">
</span></span></div>
<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">It’s almost like a first year of marriage…again.<span style="mso-spacerun: yes;"> </span>Don’t get me wrong, our first year of marital
bliss was pretty good.<span style="mso-spacerun: yes;"> </span>And since then has
become a well-oiled machine.<span style="mso-spacerun: yes;"> </span>We just celebrated
our 16<sup><span style="font-size: x-small;">th</span></sup> year the end of May…yet this year feels pretty new again. <span style="mso-spacerun: yes;"> </span>That might SOUND great (fresh, new, exciting)
but…do you remember your first year of marriage with all the adjustments,
squabbles, figuring out each other?<span style="mso-spacerun: yes;">
</span>We soar most days and we are a pretty darn lucky couple in a lot of respects.<span style="mso-spacerun: yes;"> </span>Wil is alive, which is everything I could ask
for, and more.<span style="mso-spacerun: yes;"> </span>This "new again" stuff?<span style="mso-spacerun: yes;"> </span>Sometimes I still just want the old him
back.<span style="mso-spacerun: yes;"> </span>And I think he sometimes wants the
old Jenny back too…you know, the guy who was steady and quiet and reserved…and
the girl who was free spirited, high energy, and more carefree.<span style="mso-spacerun: yes;"> Looking back always is easier...because I know we had a different set of issues then!</span></span><br />
<span style="font-family: "calibri";"><br /></span><br />
<span style="font-family: "calibri";">I am guessing this is a normal turn of events…and
now I get why people break up through trauma and illness.<span style="mso-spacerun: yes;"> </span>You go in one way, and out comes two
different people, and sometimes in opposite directions. The comfort and safety of knowing each other so well...not there in the same way. What breeds safety? Consistency, predictability...oh yeah, we've had SO much of that in the last 3 years! Making our way through uncharted territory again, lol. </span></div>
<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">Side note:<span style="mso-spacerun: yes;"> </span>We are nowhere
near a breaking point and we have never once thought about calling it quits…but,
you know, marriage is not always easy on a regular day. You don't commit to the same person every day anyway, not if you are growing and challenging each other along the way. But it definitely has given me lots to ponder about reliable personality traits might be. In psychology we mostly believe these traits are constants. Pick someone you can live with and tolerate because they won't change much. I'm not sure I think the same way about my field anymore! We are ever evolving and committing to that fact seems safest of all beliefs I can have right now.</span></div>
<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">Wil wants to live his “bonus time” life.<span style="mso-spacerun: yes;"> </span>Wil wants to be foot loose and fancy free,
without any ties or restraints.<span style="mso-spacerun: yes;"> </span>The world,
it’s his freaking oyster. </span></div>
<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">And I can only summarize my response to his zest as feeling
like I want to bubble wrap and keep him in the closet 24/7….while I nap.<span style="mso-spacerun: yes;"> </span></span></div>
<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">Two completely different extremes, of the same post-cancer
journey…he wants to live.<span style="mso-spacerun: yes;"> </span>And I want him
to live.<span style="mso-spacerun: yes;"> </span>We just FEEL very different
about how that should look!<span style="mso-spacerun: yes;"> </span>I get it, and
am supportive of his wants.<span style="mso-spacerun: yes;"> </span>I’m just
tired, working a lot, and still see his chronic pain and worry.<span style="mso-spacerun: yes;"> </span>I have heard enough voices tell me…Let him
be…and I do for the most part, I promise.<span style="mso-spacerun: yes;">
</span>And he tries to understand how difficult it can be to go from fulltime
caretaker back to wife.<span style="mso-spacerun: yes;"> </span>I feel like my
kid is senior in high school and I have done everything to keep them alive…and
now they don’t need me to DO for them or give advice.<span style="mso-spacerun: yes;"> </span>Sigh.<span style="mso-spacerun: yes;">
</span>This part is hard.<span style="mso-spacerun: yes;"> </span>The sending
him out into the world, a place that this past week has proven to remind me
just how dangerous that can be some days.</span></div>
<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">July 1 we reached 100 days until his 2<sup><span style="font-size: x-small;">nd</span></sup> stem
cell anniversary. The first 100 days felt longer than the last 537 days, since
then.<span style="mso-spacerun: yes;"> </span>Overwhelming to replay.<span style="mso-spacerun: yes;"> </span>On all accounts.<span style="mso-spacerun: yes;"> </span>He has his next check up <span style="mso-spacerun: yes;"> </span>on Tuesday.<span style="mso-spacerun: yes;">
</span>We are hoping for continued good counts.<span style="mso-spacerun: yes;">
</span>He is still on the low ends of normal ranges usually, but things have
been steady.<span style="mso-spacerun: yes;"> </span>His activity level still
fluctuates day to day depending on pain.<span style="mso-spacerun: yes;">
</span>We recently filled out a functionality report.<span style="mso-spacerun: yes;"> </span>It had me in tears.<span style="mso-spacerun: yes;"> </span>He is not one to share about how constant and
intense his pain can be, even with me (or maybe especially with me).<span style="mso-spacerun: yes;"> </span>Every.<span style="mso-spacerun: yes;">
</span>Step.<span style="mso-spacerun: yes;"> </span>Hurts.<span style="mso-spacerun: yes;"> </span>He says “I just try to push through.” And he
does it with a smile most of the time, even when exhausted. <span style="mso-spacerun: yes;"> </span>He did take the step of getting a handicap placard
and cane for the hardest days.<span style="mso-spacerun: yes;"> </span>It’s a
good thing, but hard to see “permanent disability” written out. </span></div>
<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">We keep hoping these post-chemo side effects (neuropathy and
brain fog) will lessen over time.<span style="mso-spacerun: yes;"> </span>For
now, they are pretty consistent.<span style="mso-spacerun: yes;"> </span>He is
enrolled in another class though this term.<span style="mso-spacerun: yes;">
</span>I am so proud of his hard work!<span style="mso-spacerun: yes;">
</span>And he is also continuing Tai Chi a few times a month to help with
balance and mobility, but even more so as a way to deal, emotionally and
mentally, with the chronic pain.<span style="mso-spacerun: yes;"> </span></span></div>
<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">Safe.<span style="mso-spacerun: yes;"> </span></span></div>
<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">It’s a word I want so much for him.<span style="mso-spacerun: yes;"> For us. </span>Safe and alive.<span style="mso-spacerun: yes;"> </span>Yet cancer, often, seems to be just one thing
that could take him from me in this world of violence we live in.<span style="mso-spacerun: yes;"> </span>So, to preserve my own well-being, I’m off
FaceBook for a bit to regroup.<span style="mso-spacerun: yes;"> </span>Working
in mental health, while the world spins in chaos, means I am dealing with big
issues all the time, from the therapist chair and from my cube on crisis line.<span style="mso-spacerun: yes;"> </span>No matter where in the country trauma
happens, it may come across my phone line.<span style="mso-spacerun: yes;">
</span>And being married to a Black male, sending him out the door each day
feels more and more difficult too.<span style="mso-spacerun: yes;"> </span>When
I see him breakdown about the realities of it all, I break too.<span style="mso-spacerun: yes;"> </span>I think these traumatic events affect us a
bit more than they used to, before cancer, and I am more aware of self-care
early now.<span style="mso-spacerun: yes;"> </span></span></div>
<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">While I have so much more to say on all of that, maybe for
another post, know I am alive and well…and quietly living and adapting. Finding safety in our new little nest.<span style="mso-spacerun: yes;"> </span>So forgive me while I take some moments away.
<span style="mso-spacerun: yes;"> </span>Wil will be online as usual.<span style="mso-spacerun: yes;"> </span>And you can find me through our Twitter
@Fightbigfight or via e-mail in the meantime.<span style="mso-spacerun: yes;">
</span>Catch me those ways if you need me!</span></div>
<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">Much Love.</span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";"></span><br />
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Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com0tag:blogger.com,1999:blog-88787859977003072.post-4216032518114739772016-07-02T10:48:00.001-05:002016-07-09T22:42:43.921-05:00New Milestone<div>
Day +631: Today is our first day of total apartment living. The house is empty. Cleaned. Our lease is done. And now on to making the new place livable (gosh those last few loads of miscellaneous add up! Lots of organizing to do now)! Tired doesn't even begin to describe the past few weeks. Yet mostly, I feel relief. Life. A little more managed.<br />
<br /></div>
<div>
<br /></div>
<div>
Today is a new day, for sure.<br />
<br /></div>
<div>
<br /></div>
<div>
And it's also 100 days until Wil's second stem cell anniversary. The length and anxiety of the first 100 days? We still carry some of that with us even now. But we also feel the anticipation of making it to year 2. It's funny how the day we start fresh is also a day of countdown to a pretty big milestone. </div>
<div>
<br /></div>
<div>
So in honor of that, to celebrate October 2016, we'll be doing Light the Night in Fort Worth. Will you join us as Wil gets to walk a survivor light? <br />
<br /><br />
We'd love to see you there. And if not with us physically, feel free to donate to the cause.<br />
<br /></div>
<div>
<br /></div>
<div>
<a href="http://pages.lightthenight.org/ntx/FtWorth16/FightTheBigFight">Http://pages.lightthenight.org/ntx/FtWorth16/FightTheBigFight</a></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-88787859977003072.post-48708583938545465882016-05-28T11:31:00.001-05:002016-05-28T11:31:40.010-05:00Adventures 'N Edukashun: First Class Back<a href="http://adventuresnedukashun.blogspot.com/2016/04/first-class-back.html?spref=bl">Adventures 'N Edukashun: First Class Back</a>: Hey folks. I have been meaning to post about my first class since returning school........again. Me and my wife have decided that I shoul...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-88787859977003072.post-52582390659385007852016-05-19T20:44:00.000-05:002016-05-19T20:47:17.313-05:00Full
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Jenny here.<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">In just a few days, our move to our new smaller, but fuller, life
will commence. I may not be sleeping much in the next few days between working and sorting and packing!</span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"></span>For the past month we
have been sleeping on our full sized bed, knowing the king would not be doable
in the new smaller space but, also not wanting to shell out the cash for a new
queen mattress and frame.<span style="mso-spacerun: yes;"> </span>So far, so
interesting.<span style="mso-spacerun: yes;"> </span>I mean, we did spend about
7 of our 16 years together on a full size bed already…but after a king…well, it’s
an adjustment.<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">I have missed knowing someone was there next to me (let’s
face it, the beauty and horror of a king size bed to me is feeling like you are
sleeping alone, and as of the last few years, we have already done SO much
sleeping alone, due to hospital stays, that I have missed throwing my arm...and cold feet his way). The good:<span style="mso-spacerun: yes;"> </span>Having him right there.<span style="mso-spacerun: yes;"> </span>Ugly:<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Life on a full size bed requires really
working together, understanding, and no room for any dramatic, angry turnovers if
things are strained!<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">The whole sleeping arrangement has had me thinking a lot
about our move, our new start, new chapter, and how the word FULL keeps sitting
on my heart these days.<span style="mso-spacerun: yes;"> </span>It’s not easy to
down size.<span style="mso-spacerun: yes;"> </span>It means so much more than
just getting rid of stuff (that part has not been as hard as we thought it
would be).<span style="mso-spacerun: yes;"> </span>It’s another little reminder
of the dreams we had that have died…Of the hope we had moving into that house…of
the quick spiral into cancerland…of such precious, raw, traumatic, real, lovely
moments in that house that changed us forever.<span style="mso-spacerun: yes;">
Where he walked again and smiled again. Where I threw up on my slippers but leaned in with love. </span>Ashes to ashes.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Yet, just as we mourn, we also feel so much more alive and
have hopes for the fullness of life to continue growing in us through this
transition.<span style="mso-spacerun: yes;"> </span>There is relief in this
decision.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">I used to love the merry-go-round as a kid, the faster, the more centrifugal
force the better.<span style="mso-spacerun: yes;"> Why was that stomach turning experience so much fun?</span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Do you ever just have a moment in time where you can
ACTUALLY see events of your life spin, full circle?<span style="mso-spacerun: yes;">
</span>And the energy that comes with it is amazing, alive… and makes you also
want to vomit? This month has felt a little like that…a merry-go-round.<span style="mso-spacerun: yes;"> </span>Holding on for dear life.<span style="mso-spacerun: yes;"> </span>Exciting and very emotional too.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Wil.<span style="mso-spacerun: yes;"> </span>Medically he
looked good at clinic last week.<span style="mso-spacerun: yes;"> </span>Counts are
good.<span style="mso-spacerun: yes;"> </span>His oncologist is happy with where
he is at right now.<span style="mso-spacerun: yes;"> </span>He will see her
again in August. <span style="mso-spacerun: yes;"> </span>His mobility,
neuropathy, sleep, and weight seem to fluctuate so much these days.<span style="mso-spacerun: yes;"> </span>He is sleeping a bit better after increasing
his Lyrica (the neuropathy makes him a very restless sleeper)…but it has made
his leg edema and weight increase.<span style="mso-spacerun: yes;"> </span>He
continues to try to increase his activity level, but the aforementioned side
effects of meds and kicking cancer’s arse, just make it hard.<span style="mso-spacerun: yes;"> </span>Do you pick sleep or weight gain?<span style="mso-spacerun: yes;"> </span>Chronic pain or edema?<span style="mso-spacerun: yes;"> </span>We hope this won’t be a forever impossible
choice and that the neuropathy will get better in time…but I can read…and these
are often things that persist for a lot of survivors.<span style="mso-spacerun: yes;"> </span>One day at a time for now on that front.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">For Wil, I feel like (this is my opinion, wife blog, so he
may disagree!) this month has been just plain overwhelming.<span style="mso-spacerun: yes;"> </span>On one hand he is excited to move too.<span style="mso-spacerun: yes;"> </span>He got an “A” in his sociology class (he
worked so hard in his first class post cancer and is now looking a summer courses).<span style="mso-spacerun: yes;"> Good stuff! </span>But every coin has a flip side, and his has
some darkness…different than mine…still so fresh and real.<span style="mso-spacerun: yes;"> </span>Anxiety, trauma…these are real post cancer things
and can pop up in unexpected ways.<span style="mso-spacerun: yes;"> </span>As a
wife, and unfortunately a trained clinician (which makes me painfully aware but,
too close to home when symptoms arise, to be rational) it can be hard to watch.<span style="mso-spacerun: yes;"> </span>He can be flying high on life and hope one
moment, only to be anxious and angry the next (yes, dear hubby, I know this
description captures me most weeks as well…we are quite the post-treatment pair trying to
find our way together!).<span style="mso-spacerun: yes;"> </span></span></div>
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<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Here’s an example:<span style="mso-spacerun: yes;"> </span>The
other day he was very worried about something that was so farfetched and
unlikely to ever occur.<span style="mso-spacerun: yes;"> </span>Worked up,
couldn’t get it off his mind the whole night.<span style="mso-spacerun: yes;"> </span>To me it
looked like straight up irrational panic, at almost a paranoia level.<span style="mso-spacerun: yes;">
</span>He knew it.<span style="mso-spacerun: yes;"> </span>He’s not without
insight.<span style="mso-spacerun: yes;"> </span>I kept pushing and we were both
getting frustrated.<span style="mso-spacerun: yes;"> </span>How could he be so
distressed over this one little thing?<span style="mso-spacerun: yes;">
</span>And in his mind, how could I not see it was huge because it COULD happen?</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">**Side note:<span style="mso-spacerun: yes;"> </span>I am the
worst at supporting him in these moments.<span style="mso-spacerun: yes;">
</span>My mind races from fear/sadness to therapist mode analyzing to just
being angry that he, that WE, have to deal with this at all!<span style="mso-spacerun: yes;"> </span>My most regretful moments as a wife are these
times…when I just want to or do tell him to get a grip…even though I know he’s
spinning and really in a stuck spot on the merry-go-round and about to fall off or puke…when I could use a bit more compassion than I show.<span style="mso-spacerun: yes;"> </span>I guess I’m outing this phase because it is such a big, hard stage.<span style="mso-spacerun: yes;"> </span>And not really exposed as much in blogs and
online chats, as the treatment days. **</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">And then he finally blurted out what made my heart stop, drop,
and understand more fully what all these little anxiety ridden moments, that
used to be no big deal, really encompass:<span style="mso-spacerun: yes;">
</span></span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"></span>“They said my transplant wouldn’t fail.<span style="mso-spacerun: yes;">
</span>But it did.<span style="mso-spacerun: yes;"> </span>All those side
effects that were so rare, they happened.”<span style="mso-spacerun: yes;">
</span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">The almost impossibilities became realities more than once and that hangs on your being even post-treatment.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">How do you trust your instincts, your universe, your future,
when you went through a process of being stripped of all of it?<span style="mso-spacerun: yes;"> </span>Of melted down, processed, and having almost
no control over your person?<span style="mso-spacerun: yes;"> </span>Of not knowing day to day
what your body will do or won’t do?<span style="mso-spacerun: yes;"> </span></span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"></span>This
is what it looks like folks, in cancerland, or I imagine any chronic illness: A man with a zest for life and endless
laughter, that also wears the burden of chronic pain and the emotional worry
and mistrust of his own plans…both sides he’s so rightfully earned. <span style="mso-spacerun: yes;"> </span>Gosh, I feel like the path is right there,
that we are on it, that we are looking forward.<span style="mso-spacerun: yes;">
</span>But even as your mind moves forward and your heart expands, your body remembers the pain of the
past and those deep neural pathways of foreboding can pop up and persist. </span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">This week Wil also had a quite an orbit moment when he
saw a loved one have a pre-transplant BMA at the hand of his own beloved BMA
mid-level provider (who was the first staff person I ever met at BMT clinic the
day Wil was transported from the SNF and his vitals tanked…the person he always
requested to do his BMA’s but has since left UTSW and is at another facility…someone
who sat down on the couch after failure to graft and was real and who always
gave me that “you’re doing amazing” acknowledgement I needed in the dark days).<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">What is the likelihood that Wil’s loved one would be getting
the pre-transplant BMA, at a different hospital, by the same person?<span style="mso-spacerun: yes;"> </span>It’s a small, small, BMT world.<span style="mso-spacerun: yes;"> </span>And, what a weird thing to be seeing it from
the third party vantage point, in real time.<span style="mso-spacerun: yes;">
</span>I have watched all of his BMA’s and they are not for the faint of
heart.<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Full.<span style="mso-spacerun: yes;"> </span>Circle.<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">He knows the pain of having the procedure, and now he knows
the pang of witnessing another’s anxiety and suffering through the same
procedure.<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Wil wants to be everything to this person, but knows he is
still healing himself and has limits, even the other doctor noted it to
him.<span style="mso-spacerun: yes;"> </span>He’s doing well, but still healing.<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">He wants to be there for them like I was for him, and in the
way he wished more people could have been there for him.<span style="mso-spacerun: yes;"> </span>It is true Wil, but with the dash of reality
that he still has to monitor his own well-being.<span style="mso-spacerun: yes;"> </span>The mind and soul are so willing, but the
body…</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">I, on the other hand, am dealing with mixed feelings about
it all.<span style="mso-spacerun: yes;"> </span>I’d like to be the bigger
person and run to the rescue, but in all honesty, I lack in that area right now.<span style="mso-spacerun: yes;"> </span>I will help support Wil in his helping and
processing this situation, I will cook the best neutropenic meals to pass on,
send energy, but keep my distance (a decision that I think is right for me, but
hard to admit to out loud.<span style="mso-spacerun: yes;"> </span>I know the
possible judgments that saying “I won’t” can bring, but I have my own emotional limits
right now).<span style="mso-spacerun: yes;"> </span>I’m not wishing any ill will
and hope for the best, having seen this process up close and personal…but I
still feel exhausted and still feel the injury of forgotten-ness from family I
had hoped would be there for us when we needed it.<span style="mso-spacerun: yes;"> </span>And, pure truth, there is the anger at the
injustice of another person in our life with a blood cancer and the fatigue of
our own life being enough to bear right now, without anything extra.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Keep us in your thoughts.<span style="mso-spacerun: yes;">
</span>We’re learning that post-cancer chronic pain is much more than just
physical.<span style="mso-spacerun: yes;"> I</span>t exists in the person
and the caregiver, just in different ways.<span style="mso-spacerun: yes;">
</span>And that on most days, we are OK.<span style="mso-spacerun: yes;">
Better than OK more than days than ever. </span>And when we are not OK that, in and of itself, is absolutely OK too.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Entire.<span style="mso-spacerun: yes;"> </span>Overflowing.<span style="mso-spacerun: yes;"> </span>Bursting.<span style="mso-spacerun: yes;">
</span>Running over.<span style="mso-spacerun: yes;"> </span></span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">We are FULL on so many accounts right now and learning how
to rest comfortably in this new, sufficient life.<span style="mso-spacerun: yes;"> </span>Complete imperfections.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Much Love.</span></div>
<br>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"> </span></div>
Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com0tag:blogger.com,1999:blog-88787859977003072.post-64912465323630100462016-05-05T18:50:00.000-05:002016-05-05T18:51:40.236-05:00Horizon<div class="separator" style="clear: both;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJLLxEQmXkeubDxJjnr-N4Jz21uJqPdbRnmRFvzgO8rUeUdIO2BhQ45pxGsGN9omsJGL1YbyT2rUWsMgiuD9c04IPr5P0vP-7bW6X_SSn5oCpe3foUNm9oNxrCRcoMlr2CbfdGma_1sOJx/s640/blogger-image-1660838116.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJLLxEQmXkeubDxJjnr-N4Jz21uJqPdbRnmRFvzgO8rUeUdIO2BhQ45pxGsGN9omsJGL1YbyT2rUWsMgiuD9c04IPr5P0vP-7bW6X_SSn5oCpe3foUNm9oNxrCRcoMlr2CbfdGma_1sOJx/s640/blogger-image-1660838116.jpg" /></a></div>
<br />
<br />
<br />
<div style="margin: 0in 0in 10pt; mso-margin-bottom-alt: auto;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "book antiqua" , "serif"; font-size: 12pt; line-height: 115%;">“To
love. To be loved. To never forget your own insignificance. To never get used
to the unspeakable violence and the vulgar disparity of life around you. To
seek joy in the saddest places. To pursue beauty to its lair. To never simplify
what is complicated or complicate what is simple. To respect strength, never
power. Above all, to watch. To try and understand. To never look away. And
never, never to forget.” <span style="mso-spacerun: yes;"> </span>― Arundhati
Roy</span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "book antiqua" , "serif"; font-size: 12pt; line-height: 115%;">Jenny
here.<span style="mso-spacerun: yes;"> A little update about April. </span></span></b><br />
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "book antiqua" , "serif"; font-size: 12pt; line-height: 115%;"><br /></span></b></div>
<div>
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "book antiqua" , "serif"; font-size: 12pt; line-height: 115%;">Two years ago this past month, Wil was
in between chemo-cations, still rebuilding coordination with his walking, sans
eyebrows, and exhausted.<span style="mso-spacerun: yes;"> </span>But like the
Texas bluebonnets in the spring, he was back up and alive.<span style="mso-spacerun: yes;"> </span>And on the very anniversary of that special
day, we took a trip to Ennis this month with the pups and took a few photos of
our own.<span style="mso-spacerun: yes;"> </span></span></b><br />
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "book antiqua" , "serif"; font-size: 12pt; line-height: 115%;">In 2 weeks we will pick up our keys to our new, smaller life.<span style="mso-spacerun: yes;"> </span>I cannot wait to nest in our new digs,
one-third the size of where we live now.<span style="mso-spacerun: yes;">
</span></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "book antiqua" , "serif"; font-size: 12pt; line-height: 115%;">Quality
over quantity.<span style="mso-spacerun: yes;"> </span>For life, love, experiences,
relationships, possessions.</span></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJliMFBUAMs4uKaQQm2-B06SsvIcR-TXSOosl0HgodSbXEPV__cakZ_grgkp60QM0zboqxmyCfMLj2WsW_OE4y7gFdOJQD-W5qLjAGPxZLU4SDaTiZMLtPw7Y_IHY3qP6tAF5ZiW4NsYaA/s640/blogger-image--911582693.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJliMFBUAMs4uKaQQm2-B06SsvIcR-TXSOosl0HgodSbXEPV__cakZ_grgkp60QM0zboqxmyCfMLj2WsW_OE4y7gFdOJQD-W5qLjAGPxZLU4SDaTiZMLtPw7Y_IHY3qP6tAF5ZiW4NsYaA/s640/blogger-image--911582693.jpg" /></a></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "book antiqua" , "serif"; font-size: 12pt; line-height: 115%;">Wil
is doing great.<span style="mso-spacerun: yes;"> </span>Medically counts are in
the normal range, low end, but normal.<span style="mso-spacerun: yes;">
</span>He saw his new PCP and the appointment went well.<span style="mso-spacerun: yes;"> </span>We are being transitioned over there because
he mostly has normal stuff now (monitor blood pressure and well being).<span style="mso-spacerun: yes;"> </span>He will see his oncologist in May and then,
wait for it…not again until his second anniversary of the transplant (October
2016).<span style="mso-spacerun: yes;"> </span>Sure, he has a few other follow-ups
with various specialists, but just routine follow-ups.<span style="mso-spacerun: yes;"> </span>His neuropathy and chemo brain, still
persist, but that man is a beast.<span style="mso-spacerun: yes;"> </span>He’s
trying his best, even if it takes a bit longer to process or get somewhere.<span style="mso-spacerun: yes;"> </span>Admittedly, it’s hard for me to watch.<span style="mso-spacerun: yes;"> </span>I know what he wants to do, what he used to
do, and it kills me to see how much harder he works at things now.<span style="mso-spacerun: yes;"> </span>It takes more energy and there is unresolved
pain from all that high dose chemo that, like many cancer survivors, often
persists indefinitely.<span style="mso-spacerun: yes;"> </span>But he’s at the
end of his first class since diagnosis.<span style="mso-spacerun: yes;">
</span>He worked hard.</span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "book antiqua" , "serif"; font-size: 12pt; line-height: 115%;">While
I still often feel drained, and sometimes just break down and cry over the ash
heap, I feel as though the purge of the household in prep for our move, is
stirring things up in a healing way.<span style="mso-spacerun: yes;">
</span>This move signifies so much more.<span style="mso-spacerun: yes;">
</span>A few months ago, the thought of moving was so heavy.<span style="mso-spacerun: yes;"> </span>It felt forced.<span style="mso-spacerun: yes;"> </span>Cancer has broken us financially in way that
will last quite awhile.<span style="mso-spacerun: yes;"> </span>So downsizing to
ease up on expenses, although the smart thing to do, was filled with yet
another grief.<span style="mso-spacerun: yes;"> </span>Then is changed from
grief, to pops of sunshine and some hope, knowing we were doing the right
thing.<span style="mso-spacerun: yes;"> </span>I can’t lie and say I have moved
through all of that heaviness, but the load…it’s lighter some days.<span style="mso-spacerun: yes;"> </span>Losses (for me or just witnesses them for
others) seem to kick me harder than they used to and deaths impact my heart
more intensely.<span style="mso-spacerun: yes;"> </span>Weighted. </span></b></div>
<br />
<div style="margin: 0in 0in 10pt; mso-margin-bottom-alt: auto;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "book antiqua" , "serif"; font-size: 12pt; line-height: 115%;">A
few weeks ago, during all the beginning stages of grief over my furniture I
would need to sell, we watched the show Empire.<span style="mso-spacerun: yes;">
</span>And this song, Good People, was performed.<span style="mso-spacerun: yes;"> </span>And it so touched my soul in places that hadn’t
been attended to in quite some time.<span style="mso-spacerun: yes;"> </span>Sometimes
healing comes in all forms and unexpected places.<span style="mso-spacerun: yes;"> </span>Wil and I have listened to it now time and
time again.<span style="mso-spacerun: yes;"> </span>His face, serious.<span style="mso-spacerun: yes;"> </span>Tears streaming down my face.<span style="mso-spacerun: yes;"> </span></span></b></div>
<br />
<div style="margin: 0in 0in 10pt; mso-margin-bottom-alt: auto;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "book antiqua" , "serif"; font-size: 12pt; line-height: 115%;">“Sometimes
it’s hard to pray/Sometimes it’s hard to stay grateful/It’s painful, hurts so
bad/Sometimes it’s hard to breathe/Gets hard to keep goin’/We keep holdin’ on
to what could have been</span></b></div>
<br />
<div style="margin: 0in 0in 10pt; mso-margin-bottom-alt: auto;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "book antiqua" , "serif"; font-size: 12pt; line-height: 115%;">“But
we’ll get by/We’ll see the light/In the morning it’s gonna be alright/The
circumstance/Is in the plan/Even if we don’t fully understand/Why the bad thing
happen to the good people</span></b><br />
<strong><span style="font-family: Book Antiqua;"><br /></span></strong><br />
<strong><span style="font-family: Book Antiqua;">"Good People" from Empire:</span></strong></div>
<br />
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "book antiqua" , "serif"; font-size: 12pt; line-height: 115%;"> </span></b><span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;"><a href="https://m.youtube.com/watch?v=xfvzJ-jDcz0">https://m.youtube.com/watch?v=xfvzJ-jDcz0</a></span></div>
<div style="margin: 0in 0in 10pt; mso-margin-bottom-alt: auto;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "book antiqua" , "serif"; font-size: 12pt; line-height: 115%;">Our
life is starting over, once again.<span style="mso-spacerun: yes;"> </span>And
we can’t wait to show you and share it as we unwrap and uncurl.<span style="mso-spacerun: yes;"> </span>What will the next half of 2016 bring?<span style="mso-spacerun: yes;"> </span>It’s so hard to say.<span style="mso-spacerun: yes;"> </span>For Wil, he has a million ideas of what to do
with this bonus time in his life.<span style="mso-spacerun: yes;"> </span>For
me, I am drifting along…go to work, come home to my favorite person and
favorite furballs, cook, laugh, rest, cry all colored tears.<span style="mso-spacerun: yes;"> </span>Repeat.</span></b></div>
<br />
<div style="margin: 0in 0in 10pt; mso-margin-bottom-alt: auto;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "book antiqua" , "serif"; font-size: 12pt; line-height: 115%;">For
both of us…the horizon. Morning.<span style="mso-spacerun: yes;"> </span>It seems to be
getting closer every day.</span></b></div>
<br />
<div style="margin: 0in 0in 10pt; mso-margin-bottom-alt: auto;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "book antiqua" , "serif"; font-size: 12pt; line-height: 115%;">Much
Love.</span></b></div>
<div style="margin: 0in 0in 10pt; mso-margin-bottom-alt: auto;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "book antiqua" , "serif"; font-size: 12pt; line-height: 115%;"></span></b><br />
<div class="separator" style="clear: both;">
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "book antiqua" , "serif"; font-size: 12pt; line-height: 115%;"> </span></b></div>
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Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com1tag:blogger.com,1999:blog-88787859977003072.post-92189575428102353432016-03-17T18:31:00.001-06:002016-03-17T18:31:18.456-06:00Touchstone<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Touchstone: a black siliceous stone related to flint and formerly used to test the purity of gold and silver; a test or criterion for determining the quality or genuineness of a thing; a fundamental or quintessential part or feature.<br><br>Jenny here.<br><br>I must have walked through that hospital door more than a thousand times in the three months Wil was admitted, for not one, but two transplants, after the first failed to engraft.<br><br>Room 813. The room that we admitted to with the queasiness and nerves you can only imagine if you're facing death with the hope of new life. It's not something that can be explained, only experienced.<br><br>Room 813. The room where Wil would be taken down to nothing but scraps of himself. Where his original immune system would be destroyed by chemicals and radiation and he'd receive new cells. Bated breaths. The possibility of life through facing death. Having time and space now, I realize that I was taken down to scraps emotionally too.<br><br>Room 813. I must have touched the plaque next to the door, tracing the Braille bumps, in my own little ritual of faith, a thousand times. Every time I entered that sacred ground.<br><br>In room 813, we cried. We laughed. When the transplant failed we crumbled. And then got back up. Wil faced death squarely in the eyes at least twice that, almost, 3 month stay. When I read about others who have been through transplant, I'm amazed how many feel like that was the point, beyond any chemo-cations, that they actually felt so close to death and had to emerge from it slowly as they gained strength again. It makes sense. How many days was he at ZERO neutrophils and getting daily transfusions just to keep him alive? Too many to count.<br><br>That hospital is torn down now. That room is long gone. A new one, a short distance away, houses the staff we will always love. But the old building...lies in dust, alongside the ashes of a former time and life for us. If I close my eyes though, I can trace every line and detail of that place in my memory. It's where our life began, again.<br><br>Those days on BMT during transplant. Ground zero. That has become a touchstone for us. The ultimate test of what we are about. It's what we have measured our days and life by, even now. It's the "we can do this next step because we've done harder" measure that we use now. I always wished I had a piece of that place as physical tribute of our transformation beginning. Of our new life chance. Of fear I've never experienced before. Of grief that swallows you up. Of stillness. And even peace.<br><br>But today, friends. Today was clinic. His CBC is ALL normal ranges! His Prograf (anti-rejection med) is DISCONTINUED AS OF TODAY!!! Next month the last anti-viral will stop! He's down to so few meds and they are all ones a PCP can prescribe. We won't be back for two months. We're being referred to a PCP. Then no oncology visit (other than a port flush) until October for his two year anniversary. He still has terrible neuropathy, most likely for life, and that chemo brain processing issue is real but coming along. In short, he's really making progress. Now to stay disease free...<br><br>The day was already SO full of ugly cry for the news. 525 days since transplant, in the making! And then....the nurse handed me something square, covered with a post it, that simply said "Clark."<br><br>She said, "we've had this a few months in the cupboard, but we were reminded today to give it to you." </span><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I moved the post it. I had to catch my breath.<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiahMnyDCnEQ89h6SEdipE3Ld3BTnOEzfxGatBf2JyT1saLLxoB-vPeR9rxfebslBAU_Q4UFzX06HbYI9daZVbqhrSouAqQl8fk3Yaky3Vs47AOPk1ncX6_kq5gqq4dK_CwJgC_Vw8aei_/s640/blogger-image-1820333346.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiahMnyDCnEQ89h6SEdipE3Ld3BTnOEzfxGatBf2JyT1saLLxoB-vPeR9rxfebslBAU_Q4UFzX06HbYI9daZVbqhrSouAqQl8fk3Yaky3Vs47AOPk1ncX6_kq5gqq4dK_CwJgC_Vw8aei_/s640/blogger-image-1820333346.jpg"></a></div><br>[INSERT MORE UGLY CRY]<br><br>Stunned. And I know who it was, even without asking. And if you're reading this...thank you. It's seriously one of the most touching gifts ever. You may have been the one to pull it off the wall...but it shows the true spirit of the entire UTSW BMT team. The love, the light, the care beyond the job description.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Everything else...<br><br>I know it's been ages since I blogged. I'm struggling and soaring all at the same time lately. I'm still in my ash heap, trying to make ash angels out of everything. I feel happy. I feel grateful. I feel some guilt in not documenting this most important part of the cancer journey. Because it's more real and harder than the treatment portion in many ways. But it's harder to document. And I'm not sure who would understand. Maybe I'm worried about judgement. Maybe I'm worried about having evidence that this part was so hard. Like there is pressure to be awesome and joyful 24/7 after all that's transpired. I'm ok sitting in my ashes, it's knowing that may be perceived as worrisome to others that keeps me from speaking too much about it.<br><br>I'm less offended and more drained of good intentioned people who are thrilled we are "back to life." I get it. And we are blessed to have people who are over the moon at how far we've come. But we are also muddling through in ways unseen, and life before? There's no going back. Theres no do over. There was never a pause button to push once he was disease free. The music stopped and now I'm not sure about what new song will fit. We have to figure all this new stuff out (who we are, what we know, what we value, how we want to live, etc) from scratch because all the rules changed. And we are piecing it together. Slowly.<br><br>So here we are. New life. And completely aimless but making steps. We are new creatures. Our marriage is forever different. Our likes, our personalities, our everything. Blank. Does that make sense? I'm still trying to figure it all myself. When your slate is wiped clean, anything is possible... Sort of. New and exciting except you'll always be carrying cancer along for the ride and the memories and the trauma and the pain exist alongside the openness. It feels like moving into a new place and your couch won't fit around the bend in the hallway. So you sit down and realize you have a couch. In the wrong room. And no place to sit in the new space. You're excited. Comfy. Disappointed. Tired. Perplexed.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Digging into life...<br><br>We're moving forward though and found a place to live, come summer. We are purging and downsizing to 700sq feet. I need less. I need simplicity. Our hope is to be able to have Wil return to school (he has taken one class this spring to get his feet wet) and to hopefully pay down debt we incurred in the last few years. This move will be big. Hard. Needed. I have nervous excitement about it! We're moving to Cowtown, just blocks from 7th street and the cultural district. We will be true city folk ;-)</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Wil continues to do tai chi to work on mobility. We have dinner and trivia with peeps on Monday. We love our little life. We. Are starting over. From the foundation. A change in residence will bring us even more good (and less stress). <br><br>And in our new place this summer, the first thing I know I will hang will be the framed room plaque. Our touchstone of what was, is, and is to come...the test of us that still continues. <br><br>Room 813. It's were life ended...and began...all in one hospital stay.<br><br>Much Love.<br><br></span></div>Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com1tag:blogger.com,1999:blog-88787859977003072.post-63276048223069737922016-01-18T11:49:00.001-06:002016-01-18T11:49:34.989-06:00The Other Side<div>After 2 or more years I, Wil, is finally posting a blog here on Fight The Big Fight. What is going in people?! </div><div><br></div><div>If you all haven't noticed, it is one day after my 1st anniversary of my Day +100. Trust me that in the Survivor/Caregiver world, it is significant. I know we should have posted something yesterday (update or blog), but it got pretty busy around here. Sorry. </div><div><br></div><div>Anyways, the other reason I am posting this is because I have some kind of bad news, some good news and some bad news. </div><div><br></div><div>The kind of bad news is that I am at Texas Oncology at Baylor Scott and White Hospital. The good news is that I am actually not the reason why we are here. The bad news is that the person with me, my mother, is the reason why we are here. </div><div><br></div><div>Well about 8 years ago, she was diagnosed with breast cancer. She went through surgery to have the tumor removed and later went through therapy while my baby sister and her family served as caregivers. Within the year she was declared in remission and other than battling with neuropathy (like me) she is doing well. </div><div><br></div><div>Recently her PCP noticed something bizarre going on with her blood and skin and she was sent to oncology/hematology amongst other specialists to figure out what is going on. Various tests were done with no clear explanation which leads us to now. She is here, accompanied by me, to have a Bone Marrow Biopsy/Aspiration (BMA/BMB). One of my least favorite procedures. It's not too bad, but it can be very annoying (<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">to me). She seems somewhat relaxed and I assured her that no matter how my experiences were during the BMA, it is usually different for anyone. Just stay relaxed I told her. Easier said that don't, but I've been there. Last week this was supposed to happen but her BP was too high and she had a high temp. This time everything </span><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">was much better. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Unlike UT-Southwestern, they kicked me out of the procedure room. 🙁 Oh well. Every place have their own protocol and I respect that although I did point out that my wife was able to stay in for my BMA. So there. 😛 </span></div><div><br></div><div>Kidding aside, hopefully they will find out what is going on and if so, it will be very <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">minor. Please pray and/or send positive thoughts. ❤️❤️</span></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-88787859977003072.post-77322894519889393172015-11-13T09:38:00.001-06:002015-11-13T16:31:14.592-06:00Ash Castles<p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><br></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">“Some things in life cannot be fixed. They can only be carried.” Megan Devine</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Jenny here. Let me start out with, we are good. I am good. Health is good. Life is moving right along in interesting ways, always. </span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">This, my friends, is a very long overdue blog post. Last I checked in, we were headed for THE Day +365 (October 9, 2015).</span><span class="s2"> I've started writing this in my head a million times. I profess that vulnerability is strength and that darkness is OK, but in my own life, it's still hard to wait the night out and be honest in a world consumed with chasing the unicorn and rainbows kind of happiness. We are so very happy these days, in arrays of color you might not associate with the word, while we are stumbling through an unlighted path. </span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">I’d apologize for the length of this blog, but this one is for me. To document the place I'm at so I can remember it later. If you are curious about life, year 2 after diagnosis and transplant, when life gets quiet and when life starts to get a different real, then read along with me! Or if you are looking for mostly fluffy stuff, scroll through the summary of recent pictures, they are pretty great in and of themselves. </span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">Day freakin' +365: To say it was anything but fantastic? Well, truthfully, it was that </span><span class="s2">and </span><span class="s2">much more. </span><span class="s2">More richly colored.</span><span class="s2"> </span><span class="s2">More painful.</span><span class="s2"> </span><span class="s2">More wonderful.</span><span class="s2"> It was more of everything than either of us </span><span class="s2">expected or have been able to hold without MANY tears.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The day started out with a trip, cookies in hand, to UTSW BMT floor. In many ways, this was a highlight from the day for both us. The floor, now in a new hospital, looks very different from the one we spent a total of 6 months in last year. But the feel…that’s made up of the people who work there, and it still felt like coming home. </span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">(Insert pause</span><span class="s2">, start messy tears)</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"></span></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCDDojX7rlQugsB6JYCdK0MkG8MT32FK6qAgjnvRBdQHeG45kueA-PA5D_5cpSMCNQGO1fmMDCmuFVv4lHUjXdwBrFodsxbek7JU9tTChKjdxAd8LQQhLf2eDotcY3KPXwGM9IzK4QZxgR/s640/blogger-image--1266871014.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCDDojX7rlQugsB6JYCdK0MkG8MT32FK6qAgjnvRBdQHeG45kueA-PA5D_5cpSMCNQGO1fmMDCmuFVv4lHUjXdwBrFodsxbek7JU9tTChKjdxAd8LQQhLf2eDotcY3KPXwGM9IzK4QZxgR/s640/blogger-image--1266871014.jpg"></a></div><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">(365 Cookies! 10/09/2015)</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Wil’s face says it all from the pictures below. These people saw the worst times, knew the worst possible outcomes, but loved and worked fiercely. These folks, in a lot of ways, will share intimate parts of this journey that no one else will understand, but us and them. </span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></p><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLPA642htOPMVXs8L8DnyAk4sy8y4qgpZmpafha8g_a3tcd7Teb-ly9pYjsRwof0tB2KNbO4N_K-fl4m5lPs3erRQJCfcdQrIJjwvJ2t1MDnzPGDHMdpOX72eKQaU-nQU2vLfKfh2LHcG9/s640/blogger-image-1389980645.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLPA642htOPMVXs8L8DnyAk4sy8y4qgpZmpafha8g_a3tcd7Teb-ly9pYjsRwof0tB2KNbO4N_K-fl4m5lPs3erRQJCfcdQrIJjwvJ2t1MDnzPGDHMdpOX72eKQaU-nQU2vLfKfh2LHcG9/s640/blogger-image-1389980645.jpg"></a></div></div><br></div><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">(UTSW BMT staff 10/09/2015)</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">And their faces said it all too. We wish we could have seen everyone!</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzJxtQsa-xuhsajoQgu2Ap5z2huLHnessjYsQVGlYpABU-hiUjY4byWnJQKImYutjrupoVyK3Z6mez4hyVYEx36gKO0iY6iJS99lHz6ZGb4zbOruc_VL6t9eERy6K2p6lGu8Xriai_8Sa1/s640/blogger-image-305284036.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzJxtQsa-xuhsajoQgu2Ap5z2huLHnessjYsQVGlYpABU-hiUjY4byWnJQKImYutjrupoVyK3Z6mez4hyVYEx36gKO0iY6iJS99lHz6ZGb4zbOruc_VL6t9eERy6K2p6lGu8Xriai_8Sa1/s640/blogger-image-305284036.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0yNrRzpCXkZiG19E5Izcz-FDhZ4LRv3iBLINCjmamowbnbPHjvlMfaRNfUYv6wvdmBOKjk-rtWH84lHuEWJu_AQI_iRe3CXRLbGZgdL1XyMm4HPGbaTD59rM_Wt3Iq0k25nlGsNesmGpb/s640/blogger-image-1613815135.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0yNrRzpCXkZiG19E5Izcz-FDhZ4LRv3iBLINCjmamowbnbPHjvlMfaRNfUYv6wvdmBOKjk-rtWH84lHuEWJu_AQI_iRe3CXRLbGZgdL1XyMm4HPGbaTD59rM_Wt3Iq0k25nlGsNesmGpb/s640/blogger-image-1613815135.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY0zmGLYiuRUUPujtXWckMoCAdQbW96AO5WhIO70NbwZo99nPt4Rp1JvJgYcoG368yzzdwGpr4_3QP7QgfvnZf3aBgpReEtNjotJqoUZEiF8uV8Szf34EfKpVZyJpu0K-_bDDZAeNlkqWq/s640/blogger-image--1562043398.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY0zmGLYiuRUUPujtXWckMoCAdQbW96AO5WhIO70NbwZo99nPt4Rp1JvJgYcoG368yzzdwGpr4_3QP7QgfvnZf3aBgpReEtNjotJqoUZEiF8uV8Szf34EfKpVZyJpu0K-_bDDZAeNlkqWq/s640/blogger-image--1562043398.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNCAh2oU7DDVE9n5nynA-oKvUKZS9KTGDSye9Fvl4d2Gh5yt9xAzDDODJ0Ufe4SdMGHtWf4lIodwCPkwhjnJkPTlW0TW8IQiRcxS78bCuMGzuPis4w5SLQlECdXkaug73UtJ9Hqoj4Tva_/s640/blogger-image--2048430322.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNCAh2oU7DDVE9n5nynA-oKvUKZS9KTGDSye9Fvl4d2Gh5yt9xAzDDODJ0Ufe4SdMGHtWf4lIodwCPkwhjnJkPTlW0TW8IQiRcxS78bCuMGzuPis4w5SLQlECdXkaug73UtJ9Hqoj4Tva_/s640/blogger-image--2048430322.jpg"></a></div><br><p></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">A few nurses kept holding his arm, telling him how good he looked, how they would never know he had transplanted, not once, but twice. It’s no wonder we’ve seen the clinic nurses and his oncologist high-five. I can say he’s a walking miracle. You can read these words and celebrate with us. These folks though, saw him when he looked like death, felt like death, and was brought to the brink of death to be born into the new immune system he is still growing. A big calculated risk. </span><span class="s2">And so, between us, we shared glances, smiles, and a knowing…this knowing…he’s still alive. And it’s an amazing mystery of which to be in the presence.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"></span></span></p><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJBT2YKKfS0jQ6rZjKIR_DQNGtJhYsTo3Ad_owxW5Ppb0gmHQyC_Z7YxUZq6qZqMd6QcaVgpBZi1-USrLir4ECsLvUdio3G6dh5apOnJP3arv35eGuhLq0eTw8QDGrSl3i_BoWkAJjqbbw/s640/blogger-image-484782490.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJBT2YKKfS0jQ6rZjKIR_DQNGtJhYsTo3Ad_owxW5Ppb0gmHQyC_Z7YxUZq6qZqMd6QcaVgpBZi1-USrLir4ECsLvUdio3G6dh5apOnJP3arv35eGuhLq0eTw8QDGrSl3i_BoWkAJjqbbw/s640/blogger-image-484782490.jpg"></a></div><br></div><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">(Wil on 10/09/2014, day of transplant #2)</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">That night we had dinner and play time at Dave & Buster’s to celebrate his "birthday." </span><span class="s2">The people who should be there, the ones who truly “get it,” were there (thank you! We know there were some far away peeps that would have loved to be there and we knew you were there in spirit). </span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"></span></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCxEVaKjJlvtNwUJKXjqGBBRO07xzh_uSEAQ1JOaM7zpinn6qKON7Ml_XNo95xcPiMkb5hS-_VkybTnWrbPgt-qbke47HyqBRyjtpRTpK5HPmRqpU9Nf3_x5dwG4KVHKLleH_AZBbbn5oh/s640/blogger-image--1346697145.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCxEVaKjJlvtNwUJKXjqGBBRO07xzh_uSEAQ1JOaM7zpinn6qKON7Ml_XNo95xcPiMkb5hS-_VkybTnWrbPgt-qbke47HyqBRyjtpRTpK5HPmRqpU9Nf3_x5dwG4KVHKLleH_AZBbbn5oh/s640/blogger-image--1346697145.jpg"></a></div><br><p></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">Wil didn’t sit down the entire night. Wil 2.0 is super social. SO social he forgot to eat. He’s happy to be alive. </span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"></span></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizRAe0Ah-XsmSMcRCoj7BKTFtzk5iAMTN-2U96Hn8aZfD6A7YXUE-QJm11j98TozAeuT2aOKT_nnVF4m5b1qoptcwVJl5rJep-i8mEWItX_98-Dyg_KQdNQrZ4Mip2BdX56rVzEAJQo-ys/s640/blogger-image--1489411668.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizRAe0Ah-XsmSMcRCoj7BKTFtzk5iAMTN-2U96Hn8aZfD6A7YXUE-QJm11j98TozAeuT2aOKT_nnVF4m5b1qoptcwVJl5rJep-i8mEWItX_98-Dyg_KQdNQrZ4Mip2BdX56rVzEAJQo-ys/s640/blogger-image--1489411668.jpg"></a></div><br><p></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">By the end of the night he could barely walk due to the damn neuropathy. I wasn’t sure if we would get him in the car! Not a complaint though from him…he had one of the best days of his life.</span><span class="s2"></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"></span></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKYDfHdbAoSAI7A8F29Wh5FQhZQt4R7ipZZkKnZi71S7XchttBZWka_E-WO63Q6Og7qJmzTF0ExR6XVa5EbOR1IMtkYjvghU3EfU5QFL4xqZE884rXgOl0GFm5URO3_x1sV7vwgW7qaPc8/s640/blogger-image-1854389398.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKYDfHdbAoSAI7A8F29Wh5FQhZQt4R7ipZZkKnZi71S7XchttBZWka_E-WO63Q6Og7qJmzTF0ExR6XVa5EbOR1IMtkYjvghU3EfU5QFL4xqZE884rXgOl0GFm5URO3_x1sV7vwgW7qaPc8/s640/blogger-image-1854389398.jpg"></a></div><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">(Last picture of the night in the car)</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">A few weeks later, on October 23, 2015, after the usual battery of tests and new BMA, we found out he has continued remission. He had the first set of immunizations to celebrate the good news (since his immunities were all wiped out with the conditioning chemo and radiation pre-transplant)! You would think after all he’s been through this would be the easy part…but he was not </span><span class="s2">excited by this milestone! </span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"></span></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOxRJgpsa-2Os2l-EUGzcfpvRX7jwP-NmG2dbDfyde2BHCfB8MwKzxyXxJ-TEw30a22f4D-rijR9mJYWzINvisfTwHbZGcdgfbHQCqpyikL18qFQEm92DsFSWUQQEQPwutuHuAWu6j8JP9/s640/blogger-image--1534106244.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOxRJgpsa-2Os2l-EUGzcfpvRX7jwP-NmG2dbDfyde2BHCfB8MwKzxyXxJ-TEw30a22f4D-rijR9mJYWzINvisfTwHbZGcdgfbHQCqpyikL18qFQEm92DsFSWUQQEQPwutuHuAWu6j8JP9/s640/blogger-image--1534106244.jpg"></a></div><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">(Wil 2.0 is also extra vocal and expressive!)</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">But since then we've enjoyed nights with friends and family. It sometimes feels so unreal I just cry. Little normals that haven't been normal anymore. </span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgc8cd4fgCZtO2EdtMrqwqFyplOkkF2K0d08nBr1A8sA5Cx7BcglK0nlE4NY8ZoSr34H5avN9t4UZDKr-soq1SuaAkdfQ88vABjOEAazKoYRV-rSsSf0ZV3l-e0rJ9prsZXj2qBaSK9X6my/s640/blogger-image--1938940271.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgc8cd4fgCZtO2EdtMrqwqFyplOkkF2K0d08nBr1A8sA5Cx7BcglK0nlE4NY8ZoSr34H5avN9t4UZDKr-soq1SuaAkdfQ88vABjOEAazKoYRV-rSsSf0ZV3l-e0rJ9prsZXj2qBaSK9X6my/s640/blogger-image--1938940271.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFvoOgILJjsYdgpzfZG_u3kEWIA97UJg2n-aXxAQb5ZKCF18MAqlYqUY935aNGhp3UKtteel-C8AsakRUinz8Kqyx3JOv5t1Sohga_kFq0jR_1opWSm6DZxch3dgYYZz7UJN3RrAQj_sgX/s640/blogger-image-1357675026.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFvoOgILJjsYdgpzfZG_u3kEWIA97UJg2n-aXxAQb5ZKCF18MAqlYqUY935aNGhp3UKtteel-C8AsakRUinz8Kqyx3JOv5t1Sohga_kFq0jR_1opWSm6DZxch3dgYYZz7UJN3RrAQj_sgX/s640/blogger-image-1357675026.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpiENm6PP-z8n6JGLCgpSnoofsIDq9_3KUSbrZcbAjUbcUdh5EyhQuCg1IQwaL4dDYqHieFHIOuQLr92BpeRk0UnKlfRPp9nPII70DSBnnqeRMZxXfvMFn_r7iaztEn_BX3APBwA7GmBFM/s640/blogger-image-368431245.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpiENm6PP-z8n6JGLCgpSnoofsIDq9_3KUSbrZcbAjUbcUdh5EyhQuCg1IQwaL4dDYqHieFHIOuQLr92BpeRk0UnKlfRPp9nPII70DSBnnqeRMZxXfvMFn_r7iaztEn_BX3APBwA7GmBFM/s640/blogger-image-368431245.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-AcgD7HfLn8lh6I73xWfJd_oGLk8-BTxpscUxW4_Q_qpSzwpAbNkYVZEy79Sz1jRjLO2YXM-Wzcp43RjqhBpzWIKTSHzJ0hdspRAmnQXJ6F24kpjQtPfZfgIegZiyqTEXobeLywu9Kdj8/s640/blogger-image--1194018014.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-AcgD7HfLn8lh6I73xWfJd_oGLk8-BTxpscUxW4_Q_qpSzwpAbNkYVZEy79Sz1jRjLO2YXM-Wzcp43RjqhBpzWIKTSHzJ0hdspRAmnQXJ6F24kpjQtPfZfgIegZiyqTEXobeLywu9Kdj8/s640/blogger-image--1194018014.jpg"></a></div><br><p></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">He was, however, the happiest guy in the world on Halloween, decorating, passing out candy by the handfuls, and wearing a costume he was so excited about that he told NO ONE beforehand. All in all, October was a great month.</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRveqKuxF_AOCKHmNcJ5wlJdX0Lxmri1xRHBZiqpwMm_D3vqBwIDV4Agg6qfJ_65XPWhK7ZxTDhbryFz6cp134WBzZYnNVT-0Ssjf-mM_lf6_EvoZGEEOHjSqC1aPmc7__bcYo6xHGbqBD/s640/blogger-image--847988173.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRveqKuxF_AOCKHmNcJ5wlJdX0Lxmri1xRHBZiqpwMm_D3vqBwIDV4Agg6qfJ_65XPWhK7ZxTDhbryFz6cp134WBzZYnNVT-0Ssjf-mM_lf6_EvoZGEEOHjSqC1aPmc7__bcYo6xHGbqBD/s640/blogger-image--847988173.jpg"></a></div><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">(Spy vs. Spy Halloween night 2015)</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">Side note: </span><span class="s2">It was a great month, yet…t</span><span class="s2">here is so much darkness and loneliness that comes with post-transplant too. For me, more </span><span class="s2">than before transplant, for sure. (For Wil? It's different. Our two experiences and processes are unique). </span><span class="s2">You go from being </span><span class="s2">constantly supported in the hospital, to </span><span class="s2">secluded </span><span class="s2">at home so you are protected from </span><span class="s2">germs, to emerging </span><span class="s2">to the social world </span><span class="s2">with fewer people in your life,</span><span class="s2"> feeling less connected to those</span><span class="s2"> around you, but you're ready to start living. (This has been hard to understand, hard to say aloud, even harder to write out, but here goes...). There were people we really wanted and needed there at the celebration</span><span class="s2">,</span><span class="s2"> but you can’t force people to hold the day with the same importance </span><span class="s2">or make sacrifices to be there</span><span class="s2">. </span><span class="s2">We’</span><span class="s2">ve been absent, and have felt somewhat useless for </span><span class="s2">2 years now</span><span class="s2">, </span><span class="s2">and people have their own lives</span><span class="s2">…they have been moving on and illness is a real drag</span><span class="s2">. And now it looks like we've made it to the other side and people breathe a sigh of relief (unless you are us staring down the actual stats of the importance of him making it to year 2-5 in terms of survival rates, we've got a ways to go, we breathe better, but it's still a lot to hold). Day +365 was more important than</span><span class="s2"> our wedding day (to me) and more important than the day he was born (to Wil). </span><span class="s2">It turns out, it is not as important to everyone else. </span><span class="s2">I, we, are working on not chasing love</span><span class="s2"> so much</span><span class="s2">, on not begging to be in people’s lives</span><span class="s2">, of trying to grow where we are planted now and take it personally</span><span class="s2">. It’s hard </span><span class="s2">to let the</span><span class="s2"> hurt</span><span class="s2"> in</span><span class="s2">, not </span><span class="s2">act a fool</span><span class="s2">, and impossible to find the right words…you know, words to the feelings you want to speak but know will hurt the person when you say them. They are my truth</span><span class="s2">s</span><span class="s2"> and most people are not asking for my opinions</span><span class="s2"> (go figure), and I get that. </span><span class="s2">As a wife</span><span class="s2"> though</span><span class="s2">, and Wil’s biggest fan, I felt like a mama bear and wanted to take away the hurt of missed RSVP’s and the “no’s</span><span class="s2">.” It’s still so painful to see him carry the weight, of all the things we lost in our proverbial fire.</span><span class="s2"> To see him trying so hard to get back what we lost. So we put on heavy metal and picked our hearts off the ground. Life is short and, odds wise, could still be much shorter...so we try to let go...of hurt feelings, but also sometimes it means the moving forward from people we've tried to hang on to...you find out what and who are your true foundations when your life burns to the cement block. </span><a name="_GoBack"></a></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">Today...marks our 2 year anniversary with UTSW BMT. Today is the day he was transferred on to the unit</span><span class="s2"> and it all started getting </span><span class="s2">real</span><span class="s2">. I've known all week what THIS week meant. </span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">Have you ever watched Survivor? In the last episode or so, the remaining survivors take a long walk, down a path, to pass by the torches of each person who left the camp. It’s a silent and introspective stretch to contemplate all they have been through, all that has transpired, and all they have learned. I feel like I have been making that walk lately. </span><span class="s2">Past the milestones, dates, and memories of the last two years. It's been a quiet and emotional time. Wil has not been in the hospital a whole year now. </span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><br></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">I’m sleeping more now, like a solid 8-9 hours a night. I’m feeling more alive</span><span class="s2"> and energetic</span><span class="s2">. I’m just coasting through the quiet days with Wil, soaking up the time before he returns to school, less encumbered by medical visits and errands now. Wil is taking care of me </span><span class="s2">more. I have a partner back. It's amazing. </span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">(Insert everyone cheering and congratulating us).</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">Yet the trouble with this leg of the journey is: I’m sleeping more, I have more energy, I’m coasting, I’m not merely surviving…free to finally feel the exhaustion of 2 long years, free space to think, freedom to be overwhelmed by the facts of ALL of this in a way I haven't had energy for since before diagnosis—the fact is I almost lost him, a few times. And it was traumatic to watch him decompensate so quickly. But I didn’t lose him. And not everyone is that lucky. I should make every second matter. Everyone is looking for us to be happy 24/7. And we are, mostly…but it’s…complicated. </span><span class="s2">Hard.</span><span class="s2"> </span><span class="s2">Scary.</span><span class="s2"> </span><span class="s2">Sad.</span><span class="s2"> Still. Enough good now to be relatively hopeful, yet enough miles to go to be nervous about making longer range plans. </span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">(Insert survivor's guilt. I get it now. It's so real.)</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">I have these intense dreams </span><span class="s2">lately </span><span class="s2">of sitting in a pile of ashes, atop the foundation of </span><span class="s2">what was </span><span class="s2">our house. There I am, dirty, undesirable, exposed to the elements</span><span class="s2">. </span><span class="s2">I’m there, t</span><span class="s2">rying to set up china pieces </span><span class="s2">on the floor, in what was our dining room, </span><span class="s2">for a dinner party. I sense, to the point I am exasperated in the dream, that the people attending will expect everything to be the same as before the fire. </span><span class="s2">They will need wine and </span><span class="s2">hors-d'oeuvre</span><span class="s2">s. </span><span class="s2">Music.</span><span class="s2"> They will need good will and cheer.</span><span class="s2"> </span><span class="s2"></span><span class="s2">And so I begin</span><span class="s2"> my preparations</span><span class="s2">…</span><span class="s2"> </span><span class="s2">anxiously attempting to build walls out of the ash.</span><span class="s2"> </span><span class="s2">Desperately trying to wipe the ashes from my face and clothes.</span><span class="s2"> I feel the stress of the ticking clock. They will arrive soon. I'm frantic. </span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">And each time I have the dream, it never works. The walls don’t erect. </span><span class="s2">I cannot find the food. My tears only help thicken the ash into a glaze on my cheeks. </span><span class="s2">The people don’t show. </span><span class="s2">And I feel relief that no one has arrived. Because I feel ashamed of what's left, how little is left of what I recognize. And then I feel rejection swell up that no one has arrived. So</span><span class="s2"> I lay there</span><span class="s2"> on mountain of debris</span><span class="s2">, paralyzed in the enormity of the moment, looking at the open sky, ash </span><span class="s2">particles </span><span class="s2">suspended in the air I’m trying to breathe.</span><span class="s2"> </span><span class="s2">I inhale what was my life, holding it in my chest, knowing it will sicken me to not let it go, but wanting to keep it with me a little longer. And so I exhale a cloud of dust, finally. Letting s</span><span class="s2">tillness </span><span class="s2">come</span><span class="s2">, followed by the darkness that is </span><span class="s2">the everything</span><span class="s2"> of what I feel</span><span class="s2"> in that space</span><span class="s2">.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><br></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">I’ve been absent, angry, anxious, and emotional. I’ve been unable to find a way to say the truth out loud (of how you can be gratefully broken and lost without needing to be found) while everyone around cheers in excitement for us making it this far. It's a miracle. I know it first hand. And I also know this next part of healing is harder than the rest. </span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">I’ve come to a place in grieving where I realize just how marginalized the role of caregiver can be, how isolated the process of moving on can be…it’s not that I don’t celebrate every day. </span><span class="s2">More than anything I feel overly attuned to the moments. </span><span class="s2">Yet that </span><span class="s2">is a sliver of the </span><span class="s2">post-</span><span class="s2">transplant experience</span><span class="s2">. A mere part, </span><span class="s2">a</span><span class="s2"> </span><span class="s2">tiny </span><span class="s2">fraction</span><span class="s2"> </span><span class="s2">feeling, the part everyone wants, but not </span><span class="s2">the whole of it. I don’t require or expect anyone outside of it to understand</span><span class="s2"> completely</span><span class="s2">, </span><span class="s2"></span><span class="s2">or to DO anything about it. Yet, I need a way to honor this segment and the realization </span><span class="s2">that this rebuilding part feels like my very own ash castle of a dinner party. </span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">And maybe, just </span><span class="s2">maybe, </span><span class="s2">I </span><span class="s2">also hope that knowing</span><span class="s2"> and sharing might help someone else</span><span class="s2"> to</span><span class="s2"> not trivialize the vastness and </span><span class="s2">the </span><span class="s2">depth people walk through, even when the outcome is in their favor.</span><span class="s2"> That there is still grieving in living. It might </span><span class="s2">make you uncomfortable to know the darkness, but it exists. It's real. Powerful. Worthy of acknowledgment. </span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">The favor we were lucked with, </span><span class="s2">was born out of the fire of a life once lived, and </span><span class="s2">died, and has come at a cost.</span><span class="s2"> I'd pay it a million times over, but I need to say it's a cost that keeps expecting repayment, long after you might expect. </span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">And if you’re willing to sit in the ash pile?</span><span class="s2"> </span><span class="s2">In the still darkness?</span><span class="s2"> If you're able to lay on the floor with hope in your heart, but silence it so the sadness can be honored? Then you’re welcome here at our castle anytime. There’s no fixing to be done, no spirits or walls to be lifted or repaired, but we’ll always accept help in carrying the load and sorting through the rubble of our gutted life. </span></span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">It's the less glamorous, but most important, part of rebuilding. </span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s2" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Much love.</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p>Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com0tag:blogger.com,1999:blog-88787859977003072.post-29920522173382892552015-10-03T23:16:00.000-05:002015-10-03T23:41:18.130-05:00Unbridled, Undone<div>
<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Jenny here. It's my fourth attempt to finish this blog. And tonight, I think it must be done. It's just been too long and too much. </span></div>
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<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Lately, I imagine Wil thinks I'm overly distracted. Overly emotional. And he sometimes feels like I'm not listening to him too well. He knows I'm often tired. And with grace he forgives me. Yet, I still see the look and know he's confused. He's so happy. So social right now. </span></div>
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If behavior were just face value, he'd have it right. I can get moody and inattentive. I often ask for him to repeat things. Stare off into space, just smile and nod...or at my worst moments, get grumpy and short with him. While I'm usually pretty even, I don't know, the past few weeks, I'm just on edge more. </div>
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Side note: Could it be the anniversary? Could things be so good I'm adding drama to the calm? </div>
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Thankfully, behavior is rarely valued at what you see and, in my case, not at all what I want him to see or experience from me as a partner. I'm</div>
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SO happy he's here. SO thankful for each passing moment. And sometimes SO annoyed. <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Alas, married life. And more normalcy. Ups and downs of my own making now. </span></div>
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I'm not disconnected from him at all. Or upset with HIM...at all. Or it's not my intent to be that way. Yet I do feel these growing interruptions and agitated buzzes more present in my brain the past few weeks. I feel "blurred" because I'm so focused on...everything...all the time...all at once. And yet? Sometimes focused on nothing...at all. </div>
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It starts as a relentless intunement with the whole of it...a vibrational pull towards creating meaning out of even the microscopic bits of the day. Not everyone gets this second chance. I want the most of it all. When we learn about another fighter who has died, it throws me off the horse. And I want to make sure I'm really here, really stringing together this new chance. (There may be a twinge of survivors guilt here...from a caregiver point of view...because life is good for us most days now. And I grieve for others that don't have their loves in physical form anymore or those that are losing someone to addiction, infidelity, etc). </div>
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So life now...in crowded restaurants, Wil flowing out a stream of words, excitedly, about the world he lives in...I want to hear him...but without fail, a song may come on that I cried my eyes out to last year, and then all I can see and experience is the stark contrast between the man in front of me. Smiling. Laughing. ALIVE. And the words that are booming, and taking me back, from the song now inside my ears. So loud are both the sight of him and the soundtrack of my world last year, that they almost drown each other out. </div>
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I can't keep up with his words. Too lost in the total experience of being right there. With him. I can't keep up with staying "intune" to the seconds. </div>
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The touch of his hand on mine and I no longer recall what I wanted to say anyway. </div>
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Sensory overload ad I try to assemble the pieces of my life with him in something that MEANS something. </div>
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We've been dating a lot these days. Like a little old couple. Walking the mall, sharing a cookie, catching a movie, strolling a park at sunset with the dogs. The little things. So nice. <br>
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We did act more our age in August and went to an OUTDOOR, germy, concert. People. Sitting on the grass. Late night street tacos afterwards. </div>
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His face. It says it all.<br>
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Medically, his labs looked AMAZING a few weeks ago. Near perfect. This month will include a BMA and extra blood work. ECG. Lung function tests. If all is well, and blood work remains good, no need for any more BMA's. Ever. He'll also get his first immunizations (remember all that was stripped from him prior to transplant). Each month he's taking less and less Prograf. Even his constant neuropathy is less intense. </div>
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Fingers, perpetually, crossed. Next week we reach Day +365. </div>
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So it bid the question from his oncologist: "When do you want to return to school and work?"</div>
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And this, friends, is where the tide turned for my psyche. The better life gets, the better he gets, the less anxious I should feel. Right? Not. Soooo not. </div>
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Unbridled. Undone. In each emotion. You can guess which one of us corresponds to each of those!</div>
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I'm not ready. I'm so happy right now in the routine we created this past year. The amounts of time with him. Every day. My breath stops just thinking of not having this time any more. This respite. </div>
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Yet at some time soon I'll have to let him go. </div>
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He's already doing most errands and housework. He's joined Tai Chi, a gaming group, goes to pub trivia. He's outspoken. Kind. Sensitive. Fun. </div>
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And I feel a little lost in it all. It's like forever, or what feels like it, he's been in the dark. Not ready. Hiding. And then BAM. One day he woke up and realized cancer changed everything. So he might as well get living. </div>
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And I'm still a puddle. Of happiness. Of fear. Of grief. Of...fill in the blank. </div>
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I know he needs to move forward. Please don't say to me, "wow you must be excited" regarding this transition. Because this wife isn't ready for her baby to start school. I'll get there. I just think that for so long I've been so focused on him and in survivor mode (and I got damn good at it!) that it seems this next leg is for me to heal now. </div>
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I've spent a few weeks thinking "I just want to move forward with him!" to coming to this place tonight...a place of space. A place of knowing I'm in uncharted territory again and all that that means. Knowing I'll grow "simply because the space is there" now for me to find my way. </div><div><br></div><div>But hell. It sure isn't easy. </div>
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So it's time to let my internal compass lead. A time to let myself be ungrateful at times. A little less centered if need be. To feel less guilt when I'm undone and breathe...how valuable that nothingness of air is to our survival, yet I try to fill it! You can't force space or now. You have to rest and trust and notice. I'm free of so many demands now, at Day +359. I think I'm more fully unpacking those last 2 years now that I do have space. </div>
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Enjoy this poem by Judy Brown that I've been clinging to as of late. </div>
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Much Love. Especially to you, Wil, for just being in the space with me.</div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><strong style="border: 0px; font-style: inherit; font-variant: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">FIRE</strong> ~ Judy Brown</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">What makes a fire burn</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">is space between the logs,</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">a breathing space.</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Too much of a good thing,</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">too many logs</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">packed in too tight</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">can douse the flames</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">almost as surely</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">as a pail of water would.</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">So building fires</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">requires attention</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">to the spaces in between,</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">as much as to the wood.</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">When we are able to build</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">in the same way</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">we have learned</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">to pile on the logs,</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">then we can come to see how</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">it is fuel, and absence of the fuel</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">together, that make fire possible.</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We only need to lay a log</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">lightly from time to time.</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">A fire</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">grows</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">simply because the space is there,</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">with openings</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">in which the flame</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">that knows just how it wants to burn</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">can find its way.</span></div>
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Peskie Norskiehttp://www.blogger.com/profile/17953817937240572282noreply@blogger.com0