Full Circle

Jenny here.  

Today is Day +2192.

 

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.  

 

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.  

 

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^th 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.

 

So today—Day +2193—his 6^th 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.

 

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.

 

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 ;)

 

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.  

 

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.  

 

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.

 

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.

 

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.  

 

Even with a mask, you can see the joy on his face. 

                                        (selfie walking out of work today—week one done!).

 

Much Love. 

Release

Jenny here.

I don’t know her, but I knew her.  I was her, and strangely enough today, walking back into the oncology building, I was still her.

I won’t bury the lead like some food blogger, recipe 17 page scrolls down.  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.  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.  The proof is in the numbers, Wil has been released from BMT.

All month, and especially this week, insomnia has been my long lost friend, come to stay.  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.  Wil is different, but similar, under stress.  We’ve been easily irritated with each other this week for “no apparent reason” (are you laughing with me yet?).  Which made for a silent car ride through morning rush hour to UTSW BMT clinic.  Not necessarily angered with each other, just in our own heads.  Clearly, no stress at all at the Clark house!

Side note:  If you are an enneagram person, Wil is a 5, I am a 7.  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.  We are head first, then heart and body aware.

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.  It’s not like a PCP office where yes, many people might have some similar diagnoses, but it could be super diverse.  At oncology you KNOW why everyone showed up—to try to live.  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.  As she asked for a wheelchair for her husband.  While she gently guided him out of the way of another car and explained slowly.  While he looked alive, but exhausted and weak, and not quite tracking the conversation.  I saw them, and I kind of wanted to look away.   But I knew them.  We were them in a different life.

In the Universe’s wisdom (or maybe mocking?), by the time we had made our pitstop in the bathroom,  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.  Washing her hands.  Tired.  Looking in the mirror.  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:  “You can do this.”

These are moments that feel so private, yet so shared.  I looked into the mirror and smiled her way.  I said, “Me too.  I’ve said that in this bathroom so many times before.  Just not as often now.”  She smiled back, and genuinely said “that’s great news.”

We kept passing them at different moments in the process.  At the blood draw, at the waiting room.  I listened to her chat with others.  I used to do that too.  Pass the time with a bag of books, sketchbook, craft, but often in my weariness just move on to idle chit chat.  It’s different when you know this chapter is closing though.  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.  Holding on, holding back, letting go.

The appointment with his oncologist was medically unremarkable.  We caught her up on life.  She reviewed labs that are better than they have been since transplant, with even some improvement on the kidney function.  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.  It’s a mixed bag we fought hard to get and carry.  And grateful that we have this mess to share.

He is still 100% donor DNA.  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.  Transplant wise, GvHD or rejection is no longer a threat.  Her work with us, and with BMT…is done.  Released.  Forever on her caseload as an open appointment, but no set date to see her again.

I hate crying in public.  And I didn’t want to lose my shit there.  I sat silently, eyes filling with tears, Wil said to her that the win was because of her and me.  We both shrugged.  I’m not sure either of us takes compliments without some discomfort. But he looked at her again and said, “You saved me.”  Those words, it was all I could do to not ugly cry on cue.

She said to send her a picture as life moves on.  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.  You changed our life.  Not just through your science and skills, but through compassion, straight talk.  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.  And you always did with it with resolve to keep trying.  None of this positive outcome was for sure, but I was never alone.  Our love and life, our story, forever entwined.  No thank you will ever do.  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.

Anti-climactic is the best way to describe how I am processing things tonight.  As we walked out of clinic, people mentioned how nice it must be to not come back.  But personally, I have been dreading this moment for over 5 years.  We are over the moon about Wil’s progress.  We are adapting to life post treatment with chronic pain, follow ups, metabolic issues, etc.  We are learning each other again.  It’s just hard to say goodbye to the people who changed the course of your life forever, you know?  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.  And you’ll fight like hell against anything or anyone that tries to get in your way.

I knew this day would come.  It’s a special kind of grief though, saying goodbye to this space.

We came home and slept today for several hours.  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.

See, there will always be faces in mirrors to smile at and knowing nods to give someone swirling in the middle of emotions.  And they often won’t be strangers, as cancer doesn’t seem to rest or skip over family and friends.  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.  And that a simple, non-fixing, but all-knowing kindness, can release an emotional life jacket to another soul.  I pledge to not look away when there is pain, but to say, “YES.  Yes, I feel you.”

I know that’s the kind of love that kept me breathing, time and time again.

Much Love.

Indelible

Jenny here.

By the time I post this, it will be THE day.  For now, as I write, I am anxiously counting down the hours until midnight.  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.  

The days have certainly changed over the last half decade with him.  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.  A mere 7 months until he graduates and we celebrate our 20^th anniversary.

But midnight tonight marks the 5^th anniversary of the stem cell transplant that took; Day +1826.  Probably day +1800 of holding my breath (I’ve breathed a few times along the way, but just a few).  We will have our *hopeful* last oncology appointment next week, more a formality this year than a major event.  For us though, this visit will mean hellos and goodbyes and the end of a crazy chapter.

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.  I put my Fight the Big Fight Spotify playlist on and listen, in order, paying respect to all the emotions.  Recently, the word that has been on my heart, on repeat, about where we stand at this moment --Indelible.

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.  Not just in the science marrow kind of way, but in how it’s forever created a new Wil.  A new Jenny.  And a new marriage.  A new life that is barely recognizable at times. A life I both cherish and admonish, sometimes during the same day. 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.

You all have watched the cancer specific changes.  Cried when he was kept alive by blood transfusions.  Prayed he would not end up with an infection when he had no bodily defenses.  Supported.  Yelled Fuck Cancer. Sent legos.  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. 

The last few years have truly been difficult in so many ways, so deeply personal that I sheltered them away from most people.  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.  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.

2018 ended with us wondering what we were even doing anymore, not so much individually, but together.  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.  Attempting to find ourselves, getting so lost along the unknown trail, we couldn’t quite envision goals and dreams together anymore.  We started having the hard conversation that if we couldn’t figure it out, we had no idea if forever meant together.  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. 

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. 

2019 started out with us deciding to focus on ourselves while we also re-entered courtship with each other.  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.  Wil focused on school and his new part time job.  We started to find the bottoms of our souls again and worked to fill them up.  We ate lots of tacos with friends.  Moved to a new space.  Started taking guitar lessons. 

At some point we got our groove back.  And I know I am speaking for only me in this post, but I think we fell in love with each other again too.  And finally started figuring out this life 3.0.  Past treatment.  Past the canyon of doubt after treatment.  Past looking at each other like strangers. To the very north rim, the less traveled but, more beautiful overlook. 

Side note:  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.  The trifecta?  Damn near impossible with most people, but it’s what I feel when I am with him now.  And how I am starting to fall in love with life again too.

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.  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.   A day where there is fasting, introspection, prayer, rest--followed by celebration, shouting, and dance.  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.” (www.chabad.org). 

Cognitively, I have understood this before.  This year, I feel its message at my core. Tomorrow we will rest.  Reflect.  Love.  And shout about all the marks we will continue to carry with us.  

Year 5.  Time hasn't flown, but it's still hard to believe.  

There are no guarantees about anything.   There never were, and never will be.  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.

Much love. 

(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).

unforgettable · haunting · memorable · not/never to be forgottenantonyms:

erasable

Plans

Jenny here.

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. 

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.  

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.    

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.

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.

Five years y’all.

Five years of life being the most brilliant and heart wrenching time of our lives. 

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.

Side note:  Looking ahead is both harrowing and hopeful.  The two states overlap, almost always.

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). 

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.

Walking into, not away from...

Much Love.

"Let Go of Your Plans" by Lukas Nelson & Promise of the Real

I ain't really trying to force anything
I ain't really trying to force your love on me
If you want to be a friend to me
Don't be afraid of telling me what you thinking

Cause if you think you wanna live with me
Lie with me, and float down the river of life
Don't ask me to swim upstream
I already tried and I nearly died

Don't be afraid of change
Everybody's gotta let go of something
Don't be afraid of change
Take my hand
Let go of your plans
Let go of your plans

Sing a song along the hill country river
Keep you warm when you start to shiver
Simple things I'm gonna do for you
I don't think twice to do it cause I want to

And if you think you wanna ride with me
Jump on a horse and outrun the future
Well then you better learn to love the wind
And keep your hat when it changes direction

Don't be afraid of change
Everybody's gotta let go of something
Don't be afraid of change
Take my hand
Let go of your plans
Let go of your plans

Don't be afraid of change
Everybody's gotta let go of something
Don't be afraid of change
Take my hand
Let go of your plans

Cry

Day +1507: 

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. 

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.

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.  

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. 

And the tears flowed and flowed and have kept coming all week. 

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. 

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. 

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. 

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. 

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...

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?”  

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. 

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. 

Let this be the year for some cleansing. And maybe, some more writing. 

Much ❤️

Full

Jenny here.

It’s been awhile since I sat at my desk and cried about Wil.  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.  My work cube seems to be the place to cry.

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.  Emotions are already high for me because of it and I cannot wait to spend some quality time with sisters and nieces/nephew.  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.  It’s been good though.  Wil is tutoring a niece, taking nephews to movies, teaching another niece to drive, helping his mom out.  These are the sweetest moments for him.  He’s exhausted by the time he gets home on those days, but filled to the brim with something no words can capture.  Something better seen and felt…but it’s there and he’s full.  There’s never a pain free day for him, but he’s killing it at school and with family time.

You see, it’s Day +1456.  And it’s probably been a week since I looked at the day count.  It’s always running in the back of my mind, but not in the forefront anymore.  I’m wearing lipstick these days.  I quit Diet Coke. I’m breathing.  Stretching.  These are the things that don’t make the most dramatic of blog entries.  These are the bricks of rebuilding a person though.  One by one.

Side note:  And this might be TMI, so fast forward if you’d like.  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.  Yes, so unaware, so numb emotionally AND physically, that I was that out of sync with my own pain.  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.  Through this duality, nothing else mattered or was even noticed.  To ask someone to take care of themselves during a time like that is the most common phrase you hear as a caregiver.  It’s a good idea.  But how do you take care of yourself when you can’t even locate your own pain or be present with your own body?  I am still working on this area.  I am still trying to be more in my own body these days.

Next week Tuesday, October 9, 2018, Day +1461, Wil will celebrate his 4^th anniversary of the second stem cell transplant.  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).

But y ’all.  It’s also likely the first day of work for Wil in over 5 years.  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.  This week Wil accepted a part-time position with the community college computer lab where he will assist students.  It’s the perfect thing.  No benefits, so he can stay on my sweet health insurance through my work, and not full-time, so he can continue classes.  And a first job related to his new field.  Finally, something to start filling that resume, plus some extra bucks to attack that credit card used during treatment. 

This brings me back to now.  Sitting in my cube, tears in eyes.  The mascara might take a hit tonight as I let the intersection of events next week soak in, but the lipstick?  Fully on, as a symbol of much more, as we step into the next chapter of our Life 2.0.

Much Love.

Nothing But Blue Sky

Jenny here. 

Day +1353:  I know, it’s been too long.  Today though, is just a quick, in the moment update.

I am a day dreamer by nature.  As a kid I would lay on the grass in the summer and watch the clouds.  Still today, if I have an extra hour at my office, I might lay on the couch and look out the window.  I also have a view from my 8^th floor desk at my cube job.  It just brings me peace to look out at the expansive sky and wonder.  

I need alone time to think, even though I am an extrovert, and time to process.  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.

Lately we have just been feeling so connected to life and overwhelmed, in the good ways that are full of love and light.  We have been quietly moving along in healing.  Some days easier than others.  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.  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. 

There is a lot of grief and heavy lifting in moving your dreams along towards change.  It feels more like pushing a 5 ton rock up a gravel road than some sort of transformative, spiritual experience of lightness.  It’s tiring and lonely.

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.”  I have hung on to that simple statement.  The blue is there, it will appear in time.  Even when you are tired and lonely, just hold on. 

And this week it did, on Father’s Day, in the form of fur. 

We would like to introduce to you all, KYLO.

 

Side note:  Yes, yes, THAT Kylo, as in a reference to Star Wars.  But not because he is bad.  In fact he’s pure sweetness.  Our first date was to Episode One, so you know, for life our marriage is connected to Star Wars.  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?  Our little Kylo was dumped off at the Dallas Shelter (a kill shelter), ears full of ticks.  He was so distressed they put him up front by reception where they jokingly said he was a cry baby.  All the other dogs we had looked at were not available.  Then there he was!  Crying, just wanting to be held.  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!  My questions/comments are NEVER the same kind of questions Wil has after watching films! 

 

In Latin, caelo (Kylo) is also the dative form of the word caelum, meaning sky.  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.  He’s our blue sky, behind all the clouds.

 

So far we are settling in and getting used to each other.  I am certain the love will grow from the tolerance we now share, just a few days into this adventure.  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.  He’s so happy.  For real.  (Just wait for all the pics and videos!)

 

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.  And we are just good enough in the ways he needs.  And when a family of good enough comes together?  Even from the brokenness, that’s where REAL magic can grow.

Much Love.