Crys(tal)

Jenny here. 

Lately I can't force myself to sit down and type out anything significant, despite the fact that life is ever evolving around us. But today, I’m here.  I always have SO much to say, but I am just more quiet these days. 

Last week I was talking with Wil and asking him if he thought I should re-engage in therapy.  I feel so blessed, so happy, so alive these days. But I also just feel like staying at home and being with him.  I get excited at the thought of seeing people, now that we can do more, yet I am content with just him, in the quiet of our house, snuggled with my little family.  If plans with other people change and we end up at home?  I’m sometimes relieved.  Relieved to be home???  Certainly there must be something clinically wrong with me…I am the party planner, the fast talking, spirited, ready for action, give up sleep for any chance of social fun, kind of person.  In the past.  Now?  It’s the exact opposite.  While I’ve always needed time to process and think alone (one reason I love to write versus talk about feelings sometimes), I am ever more happy in the solitude of home and him, my big guy.  Or with just small group of close peeps.

So clearly, this shift made me think I need therapy and overanalyze (LOL).  Wil was so sweet to assure me that if wanted therapy again it would be a good thing…but that he could also diagnose me himself—cancer seems to have popped me over the line, into what can only be described as, “selective introversion.”  What a funny guy I married! 

I’ve been middle of the road between E and I in the past decade, and my Myers-Briggs type, ENFP, although extrovert, is one that always requires more recharge time…but these new feelings?  Wil says his introversion force is strong and has brought me over to the other side, in his opinion.  Is that even possible?  New immune system for him, new introversion tendencies for me?

Life is good though, truly.  Life is busy these days.  Medically speaking, from a transplant perspective, Wil is doing great.  Counts continue to maintain or improve.  There has been a few blips on the radar, including continued swelling in his legs and higher blood pressure, and they are working to treat those (probably a side effect of some meds).  But his list of meds continues to dwindle and he has not used any insulin in weeks because glucose readings have been fantastic.  His neuropathy is just constant, but he is more active than before despite it. 

Today his CBC showed elevate protein, so we know his kidneys have not liked one of his medications (which is being d/c now).  This led to a urine sample, which led to blood found in his urine sample (we won't know more about all of this until we meet with a urologist).  He is doing well enough though that clinic appointments continue to be weeks apart and his progress continues on all other fronts. 

Side note:  While I could google and freak about our new urologist consult (ok, admittedly I already googled about the test result, inquiring minds and all that jazz...), because cancer will always be a dark passenger lingering in the shadows, it doesn’t hang over us with dread like before.  It could re-emerge at any time.  We know this.  It could never be seen again.  We know this too.  It is true for any of us!  But the constant haze of death has lifted, not because it isn’t there, but because we are progressing emotionally too.  If only there were a test result to show one's heart and the progress we're making on living life despite it all...it would show good results too.

So our conversations aren’t only about vital signs and blood work, and even today with this blip, we have hope and fun plans in the present, over the next month, the next 6 months, and beyond.  We just had a much needed fun visit from Wil’s college roomie that included visiting the Perot Museum and shopping in a mall (first time in 2 years!).  In June we are hosting a small birthday celebration for a friend, and a college friend of mine is visiting too.   Not to mention we are headed out of town overnight, a big leap in faith and a needed getaway.  Close enough to rush home to UTSW if needed, but a road trip over state lines for us and the critters.  A mental break we all need from the fight.  Life.  It’s good.

 

 

 

As many of you know already, today is our 15th anniversary.  We have spent the day in a clash of life experiences that we often find ourselves facing together on this journey...a day mixed with the doctor clinic visit and blood work, ending the day with the results of the urine sample.  Sandwiched in between post-cancer stuff?  Starbucks, breakfast out, shoe shopping, barber shop, an AMC Fork and Screen movie, and an evening nap followed with BBQ leftovers from the fridge.  (Leftovers!!!  It makes me tear.  We eat some leftovers now...remember when we couldn't???  I don't have to cook from scratch every meal anymore, we risk a 48-72 hour window of meals from the past and sometimes get take out.)

 

 

The contrast of life couldn’t be bigger, and the milestone of this anniversary spotlights it so well.

Two years ago, we were half way through our eight month journey to Wil’s diagnosis.  It was the first year, year thirteen of our marriage, I cried on our anniversary, unsure if I’d have even one more with him.

Last year, in the middle of chemo, in talks about transplant, I cried too.  We had made it to year fourteen, but not unscathed.  By this time I had long given up on big yearly anticipations and long term plans, instead, exchanged for the daily joys of just being in the same room with him, whether at the hospital or at home.  I lived for, draped my soul over, the little opportunities most of us miss with those we love when life is less complicated…I was content to watch him breathe, to hold his hand, walk the halls of BMT, and sleep in the chair next to him.  Happy for every small victory.  So painfully aware of the full spectrum of feelings a love and life like ours contains.

Honestly, I’ve continued to cry a lot this past year!  After transplant, the tears never stopped, but they have changed.  In the car, at the bank, in stores, in my shower…so I could hold it together in the places I had no choice.   Holding it together is over rated though, and my tears come all the time now in post-transplant land.  Last night at work I was crying at my desk, never for no reason, and not for any fear or sadness.  All the thoughts about celebrating our anniversary, ALIVE, just hit me hard.  A coworker had come to say hello and there I was, snotty, red, and ridiculous!  I’m just so effing happy and content with life that the tears spill over at the most random times.  And I cry. 

I cry with the amazement and hope that floods me waking up next to him, watching his hair grow (and today be cut for the first time…I was the last person to cut it as it was falling out from chemo), seeing him walk the mall, take the stairs at clinic today, talk trash with Cowboy fans while wearing his Packer Jersey, and even give me some grief in his goofy, geeky ways.  Last week I cried in the leafy green cooler at Kroger, buying pre-packed lettuce again.  I’m a total spectacle in public places and I just don’t care!  Every experiences brings the, never far away, happy tears…Seeing him carry groceries in from the car, shop for his own clothes, cook me breakfast…the list is never ending and now photographable moments to savor and remember.  (Wil is not always so sure it should be documented, LOL).

 

 

 

The thing that no one tells you about the cancer journey is that you will lose some family and friends along the way, people who just can’t be there for a myriad of reasons, most of which, I imagine, involve the fear of death.  No one tells you will feel lost, more often than not, under the weight of it all.

We didn’t know that although we would lose so much, we would find ourselves along the way too, surrounded by, perhaps a more selective, yet sometimes larger circle of the people and near strangers, who have supported us and brought us to year fifteen...two years longer than my worst fears, and now with hope for many more.  Another strangely wonderful intersection of this life.

Traditionally, this year is celebrated with crystal, the first truly expensive present on those lists of symbolic gifts.  Crystal represents sacrifice and investment, clarity and transparency…of knowing each other as well as we know ourselves.

After fifteen years I think we would have that regardless, even without cancer and transplant.  Yet I can’t pretend those two things have not given me the greatest clarity of my life so far.  Crystal just can’t compare to our truly most expensive gift for year 15—life—lent to us by the Universe, once again, on October 9, 2014.

 

The past two years have been our hardest and greatest part of our story.  So today, we toast the state of our relationship, our vows…in sickness and in health…ever so crystal clear...but we also raise a glass to you all, for getting these two soulmates here, and especially to our UTSW BMT family who continues to fight alongside us and give so tirelessly of their hearts.  Cheers to making it to year 15…alive.  To health, however it shakes out physically… emotionally, spiritually, mentally, we are so very intact and cemented, which is also a gift all on its own. 

[Insert ugly cry…you know, the kind I’ve perfected, the deserved tears that show just how much this life can contain if you let it grow and swell and overtake you…evidence that I can hold so much more love for one person than I ever imagined 15 years ago when I said “I Do”…even if it means the tears are guaranteed to splash over to constantly make room for it J)

Much Love.

 

 

 

Lost and Found

Jenny here. 

It's 5:52am in the morning and we're finally headed to bed. I love being on the same schedule with Wil. Love the quiet of the neighborhood in the darkness.  Love this life. Love the deep conversations. Love the corny harassment he gives me. Love the sound of his snore (when it doesn't last long lol). The dogs are in heaven being held by him. Soulfully simple days are these.  

Yesterday we celebrated day +200. I. Cannot. Believe. It. The first 100 were so long and full of anxiety. The next 100 have flown by. We celebrated at Chipotle and even had fresh guacamole. So far he hasn't died!  Lol. I know it seems small. But these have been real risks. And now we are able to brave the outside world more.  We eat fresh strawberries now. 

 

(Day +200 dinner at Chipotle)

First, the medical. Wil is doing great. His labs continue to improve. He's off all steroids. Next week he will have additional tests to get a status on his immune system. If all is well he will be done with breathing treatments too (a preventative he's been on since transplant). AND we won't have a check up for...1 whole month.  It wasn't long ago we spent 25 hours a week at clinic. 

His neuropathy remains. The usual foot issues as well as the weird stinging on his torso. The oncology neurologist doesn't have an explanation. We hope it gets better with time. It slows him down. Makes balance a challenge. But it djednt stop him. Enjoying life!

(First breakfast out in 2 years after clinic)

The other reminder of last year:  His skin is still very dry. Spirit wise he's young these days. More energy and laughter. But his poor skin just looks old. All that treatment was hard on his body. 

I'm busy these days living and doing things that feed my soul in between the usual work obligations. Wil is earning his stripes as an admin assistant to me as we ship out oils and jewelry and manage the paperwork. We appreciate those of you keeping him busy! We are making some dents in medical debts and saving aside a percentage for Hawaii. These things and this time together...I'm committed to making it count. To making it matter. To enjoying the space to breathe. To spending late nights together and sleeping in late. 

Life is good. Very good. Evolving. 

The new pieces of me...I'm finding a little more of them each day...as clinic appointments spread out...As I turn over more to him to take care of...As I agree to let him park the car after 8 months of no driving (heart attack!)...As I let the emotions come and go and flood and dry all along the way. I'm more focused these days on what I really want. Or at least finding more of it. Even if I feel mostly lost!  

Without the constant med checks, GvHD subsiding, less constant cleaning, multiple doctor appointments life can feel strange and unnerving...I drive past Walgreens and instantly feel real panic that I've somehow forgotten to pick up a medication or medical supply.  There's just not as much of those tasks now.  I had just gotten used to the other life and now it's time to change!  It's these moments that remind me I'm changed. That I'm still healing too. 

Time to think.  That's what I have more of now. 

I've been stuck on the writing end.  But Wil and I always seem to fall into random late night discussions like tonight. The kind that help me to at least get out of my head. Some of what I want to say, I can't say here. I need to find a place for it, but this blog isn't where I can be truly free. 

I want to write about the true bottoms of the past year. The heartache of desertion. The perils of rocky relationships in the middle of the wilderness. 

These are the tender parts that remain. 

And the things people don't warn you about in the beginning. 

I feel like there are truths that could comfort others. But to write down the stories behind the stories...the whole of it with even the ugly parts...would cause some pain I'm not ready for yet. It's why I think I'm stuck these days between lost and found. And I'm working on it. Writing on my own, for me, and not to share. 

We both are working on it.  To find a way through the emotional side effects to cancer. To rummage through the remains. 

I don't think there's an around path. Only through it. I'm not sure how long thisay take. 

I'm not sure that the "right way" to say the hard stuff will ever exist. Our out loud wonderings revolve around people we love. Which is complicated. 

How do you say, I want you in my life, but you've been emotionally mostly gone while we burned to the ground and rose out of the ashes and we don't know what is even left?  That, if you want us, we want you too, but we are different people now. That you may not recognize who we are...and we fear you may not even like us the same in our new forms.

We've been out of the loop, hunkered down in the trenches and haven't always been available or engaged with anything other than our own drama. We're ready to reemerge from the cave. But we know lives have gone on without us. We've changed. People have changed. Relationships will need renewal and time. Or be finalized in their new state of being. 

The past two years have brought us together. Brought us emotional isolation. Brought us joy. Brought us to a different place. How does one go back out into the land of "normal?"  What even is that and do we want it anymore anyway?

Grieving the bits of lost dreams and building new ones. Cataloging experiences.  This part of the journey is equally as hard, but more quiet. More private.  

Lost and...at least finding, if not yet found. 

Much Love. 

Egg shells

Jenny here. 

I promised myself that I would sit down and ramble out loud the things going through my mind lately. So here goes. 

I'm recently plagued by the nursey rhyme Humpty Dumpty.  For whatever reason, this keep little ditty keeps coming up in my dreams, in my quiet moments in the car....everyday:

"Humpty Dumpty sat on a wall;

Humpty Dumpty had a great fall. 

All the King's horses 

And all the King's men

Couldn't put Humpty together again."

And then I breathe the painful air of a nursery rhyme that never had proper termination in my mind. Where does he go?  Do they scoop him up?  Leave him there?  Is he still conscious?  

When something doesn't dissipate, I take that as a sign to write, explore, ponder. 

Medically, Wil is doing really well.  In some ways my mind is constantly blown that we have been at this journey 2 years now. As the bluebonnets pop in Texas, I think about pre-diagnosis and the fear that came with the unknown. Then I flash forward to last year and our beautiful pictures, between inpatient chemo rounds, with a bald and no eye brow Wil. The feeling of gratitude for having a chance at beating this thing.  A chance for the next day or week...maybe even thinking about a month out.  That was as far as this girl could see...with so many unknowns we got good at being present. Being together. Holding tight. It's a life.  It's real time grace. One moment to the next. 

Thursday, April 9, 2015 will be 6 months post transplant. 25% of the way to that magic 2-years-post-transplant day of my dreams. (Odds increase all the time, but making it 2 years post really ups things).

Wil's counts are holding strong. They have been slightly rocked by all the prednisone.  But he is almost tapered off that stuff!  As he comes off it, the CMV and EBV are no longer detected. His counts will start to grow again. He won't be saying goodbye to the Prograf (immunosuppressant) any time soon since the skin GvHD reared it's head. But that's OK. We seem to have time and peace and that's all that matters. 

He is still dealing with other symptoms from the steroids:  weight gain, swelling, sleeplessness, etc. This too will pass.  He is also still having nerve pain...mysteriously in places they wouldn't expect.  They have ruled out additional masses on his spine...they did a full spine MRI and everything was clear except the trauma spot on the T6 where that first mass presented 2 years ago. They have done EMG testing. We will meet with the oncology neurologist on the 15th. Honestly, I don't expect them to find anything. Just playing it safe, ruling things out.  Hoping the neuropathy gets better with time. Taking the Lyrica and applying oils that help with the pain. 

He's mobile. He's engaged. He's funny. He's more the Wil people remember. 

He's making me breakfast. Doing dishes. Laundry. Playing with the dogs. Taking strolls outside. Going grocery shopping with me. Helping with some side businesses we are pursuing to pay off medical debt. He's in good spirits. For Wil, my constant guy, life is different, sure, but he would say not much has changed in terms of what he wants from this life.  That's just who he is...get a plan, stick to a plan. Don't deviate. If life deviates for you, get back to the plan ASAP. Keep moving. 

This April, our 3rd Bluebonnet season since life changed forever, I'm in a different state again.  There is less fear.  There is more wide spread hoping and dreaming. I opened up a savings account for Hawaii. It may take years to save for it, since we are also trying to get back on track financially post-cancer, but it's opened. We are talking and researching. It's not as much a hope to dry the tears in a dark hospital room. It's a plan now. 

As life has quieted, I find myself presented with dragons of a new breed.  Who AM I?  What do I want from life?  My life is in transition right now. Redefinition. For Wil it may honestly be about getting back to where he was and his dreams. For me it's about figuring out what my dreams are made of after the fall. After the shell was cracked.  Unrecognizable. 

And it seems to be a mostly solo prospect. No amount of Calvary can spare me the struggle. So I'm back to re-reading Brene Brown, searching my soul. Brown says it best:  "Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy--the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light."

So yes, while I am away from you all, exploring the dark places, cultivating the love of self I always needed but couldn't let myself explore, I'm joyful. I'm raw. I'm in pieces. I feel like the toddler who notices all the little sensory experiences that adults have learned to tune out. I'm hit with indescribable punches of wonder, to the gut. Beauty I can't ignore. Passion I can't explain. Taking it all in. It's exhausting to feel it all. It takes my breath away. And so I've needed some time lately.  Silence. 

I am so broken open, as of late, I find tears at the strangest, smallest slices of this life with Wil. 

He made me coffee!  

He is so intolerable and moody!  

He's carrying in groceries!  

He's rambling on and on about politics I care nothing about!  

He's asleep next me!  

The list goes on and on with all the trinkets of daily life I used to take for granted, but now are all I see. 

And it's in those broken moments of wonder that I know what I definitely don't want...I don't want to work 80 hours a week again, never seeing him for more than overlapping minutes each day.  I don't want to linger on who's right or how to alphabetize "8 Mile" correctly. (Ok, I don't mind the scrappy battles because I appreciate those now too...I just don't want to waste time holding on to them). I won't. Life is too short. 

I will figure out a new plan. Even if it involves a tiny house made out of a grain bin (I'm currently addicted to the idea of small living some day). Or a million side hustles. Or staying in my little cubicle world job. There is so little we actually need, other than each other. I'll take him grumpy, happy, and in between. Because boil it all down, this is my dream now:  Time. Aging. Annoyances....With him. 

I'll tweak all other goals to fit around that ultimate one. Everythng else are precious details, but not the point all together. 

And so that silly nursery rhyme, stuck in my head, led me to some history tonight. It didn't always end with "Couldn't put Humpty together again."   The place I've been stuck. Feeling isolated and in pieces. Waiting. 

So I've decided to take the older Mother Goose manuscript version for my dwelling place these days:  "Could not make Humpty Dumpty as he was before."

I don't need to be together, to have this shit all worked out and pretty. I don't need to be a perfect replica of Jenny, circa 2012.  She was great, but I'm not as I was before. I'm something entirely stronger, more focused, more vulnerable, and more alive. I'm becoming something I wasn't before. I'm meeting myself half way each day. Stepping on all the eggshells. Struggling all the way through painful authenticity. 

Coming together, by falling apart. 

Much Love. 

Depth

Jenny here.

Where has a month gone?  I haven't meant to stay away so long.  It feels as if time, which used to stand still most days last year, is moving along at a regular, consistent pace these days.  There is a new rhythm of life, as of late, that has a comfortable beat.  A vibration, depth, that keeps us moving along.  We are getting to do more normal things, in a play it safe restricted way, like grocery shopping after 10:00pm.  But I LOVE these slices of "normal."

Wil is slowly becoming a hipster with the fuzzy, fluffy hair he is growing on his head (covered with his usual knit skull caps) and his ever expanding beard!  I know people who don't know him might see it as messy, unruly, and just plain scruffy.  But for us, this is a daily reminder of health and is a sign of life.  And as I annoy him with touching his locks every chance I get (and offering it up to others!), it brings me calm.  It clarifies hope.  Progress.  And so I opened up a savings account for Hawaii this past week.  

Wil's counts are holding strong and continuing to improve in most areas.  After my last blog, his skin became a beet red rash, head, fingers to knees, and was deemed skin GvHD, grade 2.  Miserable, uncomfortable.  BUT a true sign that those donor cells are strong and in charge.  Sure, they are attacking him because they figured out they were in a foreign land, but they have the strength to fight off other invaders, like cancer.  A grade 1-2, that can be treated, actually lowers his chance of the leukemia coming back.  A rash of resistance!  

The skin GvHD has responded well to the mammoth doses of prednisone used to treat it (he was started at 80mg and most people feel crazy at 20-30mg!).  Within 2 weeks the red was gone, and my little beet turned into a shedding snake.  Skin falling off everywhere.  ALL THE TIME itchy.  I could go to work and come home and know exactly where he had been by the dust bowl trail he left behind.  I know that sounds terrible...and I would like to say I have the stomach for all types of positive progress, but it was just plain gross.  For both of us.   And for our house cleaner!

And prednisone...the usual side effects have been strong.  He can't sleep well and is hungry 24/7.  Mood wise though he has been HAPPY and, my man of few words, is a chatterbox now too!  A marriage on prednisone=Wil crawling into bed at 5:30am, snuggling in, arm around me, and whispering in my ear, "Pancakes" or "I'm sorry I ate the corn chiips."  

Side note:  I had NO idea we had corn chips and hope they were not expired.  He has never really ate corn chips before!  But, apparently, he found the bag digging in the bottom cupboard in the middle of the night.  I know he loves me, and I hear those words too, but lately, the only thing on his mind is carbs.  

He is now tapering slowly off the steroids so the side effects should calm down.  Although the plan was to be off the last immunosuppressant next month (for his 6 month post transplant!), due to the GvHD, he will be on it for another 3-6 months, post steroids.  The heavy steroids have also made a way for EBV to show up in his labs.  At this point the EBV counts are low so no treatment is needed.  We will monitor, just like we did for the CMV, and they will treat if needed.  

He is also having strange stinging episodes that they can't figure out.  Stinging to the point he is doubled over in pain.  We will see a neurologist next week.  Fibromyaligia is a word they are throwing around.  His medical team has said the symtoms just aren't something they see.  Wil...normal????  We do hope we can find some answers.  He is already on Lyrica and using essential oils to help with the chemo induced neuropathy.  This stinging stuff is a whole new level though.  

Wil's first response to his oncologist about the extended plan for the immunosuppressant was "My niece won't be happy,"  

Just the day before she had begged her mom and Wil to just stand in our yard so she could yell "I love you" and see his face from the door.  

7 months.  

It's been over 7 months since she's seen him.  I know she is not the only one that misses him, but there is an undeniable string from her heart to his since the day he first held her at the hospital.  It's strange and sweet and unexplainable.  And it's been devastating to see her cry and beg to see him.  

So on Sunday, as hard as it was for him to see her and not be able to spend time with her, he stood at the door.  She stood in the yard.  They smiled.  And my heart broke.  And my sister's heart broke.  And then he asked her to come back and hug him real quick.  This 8 year old, who is rough and tumble, along with her little brother, hugged his leg ever so gently, almost as if not to break him into pieces.  We all stayed intact...at least physically.

The next day at clinic was when Wil said to his oncologist that his niece wouldn't be happy.  And she replied, "You're not at such a high risk that you should deprive yourself or your niece any longer."

Some of the best.  news.  ever.  General precautiuons still in place, but a green light to see kids again.  

His first call after clinic was to his number one cheerleader:  "Do you want to come over for lunch tomorrow?"  "OK.  I love you unkie."  Click. Call dropped.  

My sister later told me she came screaming and busting into the bathroom to say she could see him again.  And that next day?  The first real hug in 7 months?  She leaned her head on his shoulder, closed her eyes real tight, and just breathed.  Signed.  That depth is a place of love most adults never let themselves get to when someone they love has cancer.  I wish I could have caught that moment on camera, but it was so real and organic it was not meant to be caught.  We did snap a few other pics later :)

Life is good.  The depths of last year has brought us into other depths of love and happiness that could only come out of the desperation and trauma of facing this journey head on...together.  And for those that have stayed with us and travelled the depths with us, like my niece, they can feel the intensity of this new exsistence too.  Walking with those you love through the mud and muck will never be easy.  It will tear you apart, limb by limb.  You will sometimes sleep in the shadows of death and fear the worst.  You experience the agony and immeasurable pain at times.  Feel out of control.  And, like my niece, beg for it to be different, to be over.  But if you can lean in anyway, and stay put, the other side of this depth, it will fill you too.  It will fill you whole again.

Much Love.  

Asymmetrical Love

"The measure of love is to love without measure". Francis de Sales

Jenny here. Being it Valentine's Day, the subject of love is all over the place--media, signs, FB, menus, and people's minds. Everyone seems to measure relationships and love and worth on key holidays like today. 

Wil and I have never been much for celebrating February 14th. We aren't anti V-day. If you haven't noticed I'm completely smitten with the dude. So we haven't taken some stand against the commercialism of the day. We just prefer no crowds, discount flowers, and clearance chocolate. We're strategic!  In years past we would celebrate a few days later, living high off the post holiday sales prices....enjoying an empty restaurant meal. This year we may catch a movie at some point next week...or maybe not!  Life is all about home right now. 

This past week has been quiet for the most part. Wil's counts and numbers continue to either remain steady or improve.  That crumby CMV virus is now undetectable again. We are on the weening period with his last immunosuppressant med. We are holding steady and that means clinic visits are more spread out. It makes for a disorientation of days, for me at least, since we've had a pretty consistent clinic schedule for months now. 

His oncologist doesn't believe the skin rash is GvHD, but maybe that his skin oil glands are attempting to work again. The rash is still there though--itchy, bothersome thing that it is. And no amount of coconut oil or lotion keeps it hydrated. 

In addition, his skin this week has occasionally, each day, started to have a spreading, stinging sensation that has him crippled over in pain for 5-10 minutes. We had an impromptu check- in at clinic on Friday. It's not shingles. It's not anything specific at this point. No ER needed. The only real way, it seems, to get more info on it would be a skin biopsy. But no one is jumping to that just yet. For now, crossing fingers it will improve over time. 

With the days spreading out between appointments, me with more sleep and energy and time, I'm starting to do a few little things for myself. I'm taking on a few new clients. Picking back up with hobbies. Enjoying unrushed showers. And this week, I finally paid for a haircut and color. (It's been well over a year since I paid for one, thanks to the haircut fundraisers and being an "interview model"...all thanks to the marvelous Mindy). It was long overdue, as are most personal things for me in the past year.

Side note:  What did this girl request for a gift this year?  A work bench and a new set of metal stamps. I just love the metal stamped jewelry. It's never the same piece twice. Imperfect each time. A little messy and frustrating and then all of a sudden, breathtaking simplicity when it's done.  I may get that Etsy page together yet as I find ways to define a me outside of cancer caregiver. Stay tuned!

Hair is a big deal though. It can make you feel fresh and new even in the middle of things. I've always been the person who missed out on doing something more edgy. I often scrimp on the salon and choose other things to spend money on. Growing up I either had my grandma cutting my hair for free or I was worried about going outside the very traditional, long hair box. I kept it uncomplicated.  Ponytail ready. A few years ago I went shorter, but still pretty classic.  And there's been nothing terrible about it. It's been functional. 

But lately I feel so drawn to create things and a life of my choosing. Lately I feel a shift towards etching my own happiness.   Lately I'm not so entangled in expectations of others.  I care deeply about relationships, but I'm working on expending energy on me these days.  And the expense for the salon is worth it...There's really no feeling like it...and I need it as a first symbol of putting *me* back into the equation.  While I've known it's important all along and known that I should be a priority too, life in the BMT arena, or any caregiving, is a huge adjustment. And takes time. I just wasn't ready before. And that's ok. No shame. No guilt. No regrets. I'm finally here and ready to connect with this new woman I've become. 

Maybe it's the cancer. The counting of days, breath holding, that has slowly evolved into a savoring of the minutes and learning to exhale. Maybe it's this new chapter we are in...grounded, settled, loving space to just be. Laughing out loud a lot, in waves of uncontrollable wonder and happiness. (Recently I realized it was just a year ago he learned to laugh again. A moment I will never erase). Or maybe it's working 40 hours in a cube (God bless my job with supportive peers and awesome health insurance...but I still look at 3 walls of muted toned, scratchy fabric, for many hours a week in the name of making a living. But don't misunderstand, it affords me a life with Wil, which IS the life of my dreams, so no big compliants here!). Whatever it is, I'm ready for renewal. And it's already starting. I can feel it welling up from the depths and replacing sorrow. 

As I sat in the chair at the salon this week, being unintentionally unhelpful to my sweet stylist (because I have no vision for this type of creative venture), I told her the theme was "I just made it through the hardest two years of my life.  Alive!   I need something sassy." However she saw fit, I was in for the ride. 

And the color got mixed and applied. And I took time to detach from the road travelled in order to just be there, present for the sights and sounds of the experience...the rinsin' and cuttin'...and hair aflyin'. 

And what I was left with was a whole new, fun, sassy cut. Deeper, red and brown hues highlighted by the occasional blonde strands. A new start to this next life. 

As I have woke up a few mornings with the new style, extreme bed head nowadays (on just the short side though,  LOL!), I've had some time to think about how my newly inspired 'do summarizes where I am right now....And how I see love and marriage and the years and the journey. My hair and all those three...Asymmetrically wonderful. 

 (Mindy, you got it SO right!  And I feel more like me than before.)

The defintion of asymmetrical is this:  the absence of symmetry. A violation to plans. Unexpected. 

Per science we find people with more symmetrical features to have greater beauty. So at least up front we search for proportion. And in many biological ways this is not a bad thing. Sameness. 

Even in our search for that mate and perfect life we are attracted by symmetrical ideas, views, and physicalities...yet true identical symmetry isn't really possible...and I'd argue not always desirable.

The core of the human body, mostly bilaterally a mirror of itself, contains this blessing of asymmetry in our heart. Not the fru-fru pink and red kind you give out with candy today, but that central organ in your chest. Those squishy, spongy things that expand and contract to get us oxygen?  Those lungs are situated around that asymmetrical heart, and guess what?  They evolved to an asymmetrical shape to fit and function alongside it. Two life sustaining organs. Nestled around each other. Neither proportioned, but in harmony.  Between each side and each other. 

We can fight life's asymmetries or grow around them. Some years are longer or harder. Some people are given more or less or different struggles. Sometimes you are the patient and other times the caregiver. And there are moments or stretches where one person goes the distance when the other can't. There's nothing to compare or fix. That's the point. Every piece of this existence has it's value and place.  Unexpectedness is hard but not without a powerful purpose. 

My valentine guy remains more of a complimentary force in my life than any mirror image I had hoped to find. Our marriage is challenging because of the asymmetry of us and the circumstances life has given. Because of this we are growing into our lopsidedness to an even deeper hue of sentience. 

The imbalances of life won't be what we seek.  In our humanness we are drawn to the "safety" of symmetry. Who would want disorder?  It's why we are fortunate to sometimes be in a place of unexpected mercy...even if I could go back and somehow prevent cancer, I'm certain, down to my last cell, that as it stands now I wouldn't.  My stomach drops just typing that because the arrival of who we are has come at high costs and pain.  On one hand we can't wait to be less engulfed by the treatment process. Interference with the long bumpy road that just happened to crash into us?  We wouldn't be here...Exactly where we are...and in the space I know we are supposed to be....without the bumps. 

So for you, my virtual Valentine's, today i wish you love without measure and a life full of unpredictable, incredible wonder...scary as it is...that will set your asymmetrical heart on fire and fill your lopsided lungs with a messy bounty of fresh, unexpected blessings.  Breathe deep and feel the rhythm of all your life is right now. 

(There were no Charlie Brown cards with that exact wish, so I hope that will do!)

Much love. 

Undetected

Jenny here.

This time of year will always bring back memories for me and Wil.  Two years ago we had just moved into our house, full of excitment for a new chapter in our lives.

I often think about how starry eyed we were.  Wil was turning 40, back in college finally, pursuing his dreams that all of a sudden felt so clear to him.  He had just finished his associates degree and had transferred   into his 4 year college.  I thought to myself, in 5 years, by the time I am 40, Wil will be done with his degree, we will have a baby, and I might just convince him to move back to Minnesota to start his teaching career.  

Little did we know that, undetected, cancer was already in the works.  And within a month I'd be rushing to the doctor's office, Wil doubled over in pain.  But 2 years ago, on his 40th birthday, anything and everything in life seemed possible.  And then for over 8 months cancer would continue to be undetectable by biopsies and we'd ride the pre-diagnosis roller coaster.  I would feel like we had made it around several twists on that ride.  Little did we know that the major climb and gut wrenching first drop hadn't even happended yet.

So Wil's birthday, one of my favorite dates in in history, other than our anniversary,  is also the marker of how many years its been since I lost my innocent view of what was to come in life for us.  I don't know why, but I often wonder about how long and when cancer started before it was on our radar.

Yesterday was Wil's birthday and it started out with living life on the edge and picking up breakfast at the local donut shop on our way to clinic. I know, we sound like real rebels!!!  But we don't often risk any outside food no matter what the celebration.  Risk takers.  That's how we roll!

At clinic during Wil's blood draw, the nurses, who had been so sneaky last week to ask him what kind of cupcakes he liked, surprised him with red velvet and song.  Wil is genuinely a pretty happy person, but a tough crowd.  He's even and steady but that also means he isn't in need of big productions.  It takes a lot to get him upset or rattled or even surprised.  Despite that, he was very taken a back by the team effort and they had him smiling ear to ear.  And touched.  His motto, ever since I have known him, is "I'm just happy to see another year."  No presents or party needed.  This year that motto means even more.  But the enthusiasm of the staff, their genuine happiness for us, it swept him away too.  It was fun to see.  We deeply appreciate these people who care for us all along this way.

And then we met with Wil's doctor, nurse, fellow, and mid level provider.  We knew the day would include results from all the post transplant, day +100 testing:  the extra blood work, MRI, lumbar punture (spinal fluid), and bone marrow aspiration (marrow and fluid flow study).  And do you know what I love?  The fact that none of them could keep a straight face until they presented the results to us.  Smiles.  Happiness.  Disagreements about who would meet with us first to go over the tests.  Before the fellow even said hello to us, she burst out with "we have good news today."  The rest, the details, important I guess.  In their faces, however, I could already see what I needed to know--hope.

Side note:  It's easy to forget how much days like yesterday mean to those around us too.  The oncologist's nurse said that she was beyond excited and had been checking on results all last week as they rolled in, sneak peeking.  She said the night before her and our transplant coordinator looked through the packet of results.  She said "We hold on to days like this because it's not often we get a day filled with good news to share."  She had gotten to work early and was excited to see us.  

And so the results:

Bone marrow aspiration (BMA):  Leukemia undetected.

Spinal fluid:  Leukemia undetected.

MRI:  T6 mass, no longer detected (some structural damage, evidence that something 2 years ago had grown there, but the mass itself?  Gone.)

Blood Typing:  100% B+ (donor) and Wil's original DNA?   Now undetected

Undetected.

"Complete Remission."

Just as queitly as cancer creeped and came into existence, so do we now move into the next chapter of this journey.  

Our old BC life?  Well, I think I'd have to say it's  undetected now too.  We are new.  Wil on the inside, but also outside.  As his body and medical team have worked to shrink that which has changed us forever into an undetection, so has our former existence shrunk and disappeared.  Life has evolved and there is some sort of real joy we can't explain.  Joy that has nothing to do with the results of today.  Yes, a million times yes, we are happy that we are on the right track, that treatment seems to be workng.  But lately we have come to a place where the desired outcomes, although important, are not as interwined with how much we love this life...how much we enjoy each day...or how much we appreciate each moment.  

We are living life with less fear.  We are not as shackled to those starry eyed dreams because this...this day, every minute with each other...is the best I could ask for...and not overshadowed by circumstances beyond our control (or at least not as often anymore).  

It doesn't end here.  The road is still long.  But that's the point.  It.  doesn't.  end.  here.  Not yet.  

Wil is starting to ween off his last immunosuppressants.  Now is the time to really monitor, even more, for any chronic GvHD.  His blood work looks amazing.  Those cells are growing!  We still have to be ever so careful about him contracting flu or infection.  There are still unknowns and no promises.  Hugging on those nieces and nephews will have to wait a few more months.  But we are on our way to that being a reality by getting off more of the meds.  There is road ahead and we will take that, and whatever it holds, every time.

Wil is OK now to have a few non-crowded community adventures...with precautions he can have a little regular fun at non-peak times.  It's still flu season so we are mindful.

So what did we do on our way home from clinic to celebrate his birthday?  I mean, WHAT do you get a guy who right now, in this day, has been given all he needs...the best gift EVER...the gift of continued life...???

(I know you all had been anxious for this blog and results, but life deosn't wait, so these pictures are the reason we didn't post earlier...immediate fun had to ensue first).

A movie of his choice.  In a  theater...with snacks.  We saw the Hobbit, in 3D...a movie that we missed and that is about to leave theaters.  No crowds.  Just us.  A little piece of normal.

I sat there, snuggled up against Wil, snacks and a geeky movie a-plenty.  I can't lie.  I want so many more of these moments and years with him.  I am not always in this moment.  I still dream of growing old with him.  But I will take whatever this life and Universe affords us and not look back.  And in my head, the last and most important addition to the birthday song that staff sang to him at clinic reverberated again:  "And many more."

We will enjoy these moments, every last one.  I know it, beacause the old life is no longer there, cancer took that, and in its place came a presence, a grounding, to live the life we are given.  No regrets.  No checklists for a perfect future needed.  All we need is here.  Right now.  In is, between us, around us.

Much love.

Eggs, Bacon, and Coffee

Jenny here. 

Today's blog is a relief for me...all I had to put out there and organize were your sincere questions to Wil!  (And maybe smile real pretty when asking him to answer.) Truth be told, my man of few words didn't balk at the suggestion.  Which surprised me. And I sat in tears as I read his very beautiful "simply Wil" answers. 

If you know him, you'll hear his voice in these answers. If you don't, understand he says what he means, in truth, peace, and just enough energy to get his point out. So when he expounds on something, you know it's important to him. And my heart melted, like he does to me so often, when I saw a few answers that had the highest word count :)

Medical wise we have had a busy few weeks with Wil being poked and prodded for samples of blood, marrow, and fluids. Next week we will hopefully get some results and see where we hopefully are with remission. Blood count wise Wil continues to improve. He is still on one immune suppressant but there is talk of coming off that soon if he's doing well. 

That CMV keeps rearing it's little head.  It's detectable but not quantifiable so no worries at this point. Watch and wait. 

Same with his possible skin GvHD. It presented itself about a week ago. But of course, not in a typical way. It looks like GvHD, but didn't show up in the most likely place. And his overall blood work doesn't necessarily support it...either that or it's very mild. Which we'd take in a heartbeat!  

Side note:  Mild GvHD, unlike severe which can be life threatening, is a good sign of strong fighter T cells who, although attacking his face and neck right now, could be contenders against leukemia returning. His main doctor had been on vacation so we will see what she thinks this coming week. For now, steroid cream and...watch and wait. 

But the waiting is sweet right now and involves, on non clinic days, sleeping until 11am, TV in bed, and eggs, bacon, and coffee for the first meal of the day...at 1pm. 

Life is so different these days. In all ways. Yet...good. Very good. I can't quite explain it, but we have found a new level of peace lately in the individual days of post transplant. In between realities.   But more of that in the next blog because this entry is all Wil....

I promised him the only question that was mine was the last one. He likes to think I added in the "awesome wife" question because in our house if he starts out with, "Did you know..." and doesn't answer quick enough, I've been known to interject with "that I'm awesome?"  But for the friend who submitted that one, if you want to identify yourself and save me from Wil's disbelief, feel free. 

What's the weirdest experience you've had during this whole experience?

   

Probably my first lumbar puncture or    spinal tap.  Having to lay down for an hour or so was very odd the first time.

 

How would you prefer people treat you or converse with?  

       

Treat me the same as before.  My brain is not that compromised.  Converse like normal.  I don't even mind talking about the journey. 

   

Do you want to talk about treatment and what's going on? Or do you want people to just hang out and not mention it?

         

Like I stated before, I don't mind at all, but we can talk about other stuff, too.  

 

 

What's your favorite pasta sauce now?

        

Right now, marinara on most pasta.  Cheese on macaroni.  

 

 

What were the moments where you felt the most supported by people?

        

This is a tricky one.  Mostly the few visits I got from friends and family.  There were times that some of them went above and beyond and I was greatly appreciative.  

 

 

If you could go back in time, before cancer, and tell yourself anything, what would you say?

      

Make up your mind and get back into school immediately.   

 

 

What are some ways that your wife has impressed you during this experience?

        

Oh my goodness, how has she not.  She made me her top priority although that is not how it should go.  I don't know how other caregivers did it, but I could not have had a better one than her.  Usually, spouses leave due to the pressure or fear, but I believe she'd be damned if she gave up.  I may be the one being poked and prodded, but she is taking care of everything else including being one of the best advocates ever.   I get scared if the shoe were on the other foot (knock on wood).  I just don't think I would do a great job, but I will damn well try my best. 

 

 

What is something you never get tired of?

       

Sleeping in and being with Jenny.  

 

 

What is the best way for people to support you?

       

Being there.  Taking an interest in what is going on.  Really caring about what is going on.  You don't have to be there 24/7. Hell, you can be there once a month, but have us feel like you truly care because we can sense the fakes.  Oh, and if you feel like you need to ask us or yourself where you lie, your support is probably not where you think it is.   I know that sounds harsh and I apologize.   

 

 

What is the worst way people have tried to support you?

        

I think I need to plead the fif on this one.  Previous answer was partially harsh enough.   

 

 

So many people are inspired by your marriage.  Can you give insight to how you are such a team during this time in your life?

      

Aw man!  I don't know.  I don't think it changed from before diagnosis.  We have always had a pretty strong marriage.  I feel this time has made us stronger, closer, and more awesome.  So I guess it did change us some.  We have always had each other's back and kept each other in check (even now).  No one can pin us against each other.  One of the best pieces of advise I can give is communication.  I know it sounds cliché, but dammit it is so true.  Talk everything out.  Be an ear during those venting sessions.  Don't hold stuff in.  It can kill ya.  I am still working and improving on this.   Also, keep loving on them.  Show them as much affection as possible.  As an Aquarian and an Introvert I have had a hard time showing affection and emotion.  Along with communication, I am working to improve this flaw, but you can't doubt my love and loyalty to her and vice versa.  We just go with the flow and work it out.  Plus, be true to the relationship.  If you seriously not feeling it anymore, get out!  Unless you can work it out. 

 

 

Has cancer led you on a spiritual journey or helped you grow?

       

Not necessarily a spiritual journey.  I know that sounds bad, but my faith is as strong as it was before.  Not that I am saying being on a spiritual journey means you started out with shaky faith.  That's just where I stand.  It did help me grow in my marriage and my knowledge of the medical field. 

 

 

Do you know how awesome your wife is?

      

Yes I do and I know she did not coerce this question *wink wink*.   LOL!  Just kidding.  No, I do know she is extremely awesome.  I don't know how I would be able to go through this without her.   

 

 

What advice would you give to someone newly diagnosed?

     

Hmmm.   Keep your head up.  Not going to lie about how scary the journey can be, but it is up to you on how you handle it.  Keep a strong positive attitude, stay focused on you and the task at hand, make sure your caregiver (if they have one) is taking care of themselves while taking care of you, don't lose faith, and do what the doctors and nurses say.

 

 

If you could go back to the first week after diagnosis, is there any advice you would give yourself?

No matter what, keep a positive attitude.  Took me months to perfect that.  

 

 

What has helped you cope with this long journey?

      

More like who.  Jenny 

 

 

Have your dreams for the future changed since being diagnosed?

      

They may be compromised a bit, but no. 

 

 

What is your biggest fear and biggest hope?

       

You can guess my biggest fear (I refuse to say it here).  My biggest hope is complete remission.   

 

 

What are the biggest misconceptions about the cancer journey (assumptions people make or say about what is like to be in your shoes)?

      

Probably when people with different cancer diagnoses, where their journey was lighter than ours, try to equal it to ours assuming what we went through was the same thing they went through, until I spell out our experience to them.  I know I will never compare my journey to anyone else's, even if they have the same diagnosis.  RIP Devan.

 

 

Is there one moment in the last year that sticks out in your mind the most?

       

Other than the transplants, losing my baby chihuahua, Bella (sorry for bringing that up Jen).  There are times she pops in my head, especially now that we have Violet.   

 

 

What do you think about your life, and your wife, being so public now through FB and the blog? 

      

My life:  I am still alive and plan to stay that way!

      My wife:  She is everything to me.  The best blessing in my life.  

      Being public:  I feel very great about that and feel my wife is doing a wonderful job with it.  

 

What was the happiest day for you in the past year?

The day of discharge in October. Coming home. 

Much love, Wil