Sparks

Jenny here.

Happy 4th of July!  I am at work tonight while Wil is watching movies at home with the dogs (our typical holidays are spent this way since I work evenings/holidays/weekends).  Yesterday, we went to the drive-in theater and saw a double feature of Inside Out and Jurassic World, with fireworks in between.  It was a gorgeous Texas night, 85 degree with a slight breeze…lawn chairs, corn dogs, popcorn, and people watching…so we had our holiday fun already (it’s summer in Texas...the people watching alone is entertainment, especially for Wil, who spent so much time in captivity last year).

Medically, we are status quo.  Wil did a 24-hour urine collection this week as another step in the whole “why is there microscopic blood in his urine” round of tests/procedures.  Results from that, and an upcoming CT scan plus Cystoscopy, will hopefully tell us more by the end of the month.  His neuropathy was actually a bit better this week.  We are not sure if this is due to his decreased dose in Prograf (YES!!!  You read right!  His oncologist is starting a super slow taper on his last immunosuppressant which means we are on alert  to watch more closely for GVHD, but also in hopes he will eventually be off it for good) or other med changes or the essential oils or just time.  Whatever the cause or combination of causes, he has been in a little less pain on his feet and it makes a huge difference for his spirits and mobility.  We won’t be back to the clinic until later in the month, so more news in a few weeks…

As I watched the fireworks start last night, I couldn’t help but look around. We were surrounded by crowds of people, everyone taking in the experience and lights together.  We had stood in the concession line for 30 minutes earlier for our snacks.  And I couldn’t have been MORE happy to be there, or more happy to be WAITING.  In a CROWD. With him.

Cue tears.

Sad tears mixed with the sheer joy.  I am not sure tears are ever JUST one feeling.  “Tears of joy,” I have discovered, always have an element of other feelings as well.  Whether it be relief, exhaustion, grief, fear, sadness.  Last July we were pre-transplant (nervous). Now we are at a movie (happy)!  Relationships are changed, moved on, some seem lost (grief).  I hope to never forget this day and have more of this time with him (hope and fear).

Looking at his face, sparks from the sky reflected on his smile…just 2 months ago we would have not put ourselves in any crowd, anywhere.  In my life of rushing, the common lesson learned is to embrace the WAIT and embrace the emotions.  To take in a big breath of germy air in and understand, at a deep level, how amazing it is to have an immune system and this day!

So as the fireworks began last night, I took in more than the lights through my blurry eyes.  Visual snapshots of this strange new world. Nothing has really changed, except the filters through which I now look out.

“Do you remember our first 4th of July?” I said.

16 years ago Wil and I, along with my roommate at the time, went to see a marching band show.  We had only been dating a few weeks.  As the sun set, the fireworks began and a few shells rained down over us. He asked me if he could hold my hand.  That night was the first time Wil put his arms around me, holding me tight to protect me from falling debris.  As the combustible light show fell through the sky, I...I was falling in love.  With him.

These days, sometimes I reach for his hand without asking, not just out of habit, but because I am also afraid he might literally fall while walking, from the neuropathy, or to reassure him we will be safe from the emotional debris that comes painfully close after all he has been through physically and psychologically the past 2 years.   I hold
it a little tighter and longer now to know, for real, that he is still here, right now…like if I don’t let go I’ll have him forever.  We are still walking this life together.  And there are still sparks.

If you haven’t seen Inside Out yet, do.  While I might be giving a little away here with my favorite scene from the movie, I do hope the concept, if you’ve been reading this blog, is nothing new.  The movie is a great reminder that all memories are many colors, that sadness is a gift that helps you find help and comfort, and that true happiness cannot exist in a vacuum and must allow for all feelings to be present to be real.  Sadness is a true gift and helpful.

Did you hear that?  For those of you who have weathered all the waves with us and not taken the easier route of forcing a bright side before dawn…thank you for acknowledging the power of darkness. We still have ups and downs in this healing process and still sometimes weep over the plans and our life B.C.

If you are reading this, and in your own journey of cancer or ANYTHING else (so all of us, right?), take heart in knowing there is nothing wrong with sadness, even when the course is coming out of the woods.  Take heart in fear, in disgust, in anger…they are there for a reason and just part of your brilliantly colored light show in the night, a multidimensional explosion…of being human.  If anyone tells you to be positive, to be happy, to find the gift, that everything happens for a reason, that you won’t be given more than you can handle…it matters not that it may eventually be truth...find someone who understands your NOW and how to wait with you and how to sit still with you through the struggle and ALL feelings, whatever order they
come in or look like…real joy will come about only through honoring the kaleidoscope, and not before.  Let THOSE kind of people hold you.

And know, without a doubt, that your deliberate wholeness will be found through the thick of it…in the amazingly deep, profound, and lovely shades you nurture and admire.

Much Love.

----------------------------

INSIDE OUT

[Riley is on the verge of tears after attempting to run away back to
Minnesota after feeling very homesick]
Riley: I... I know you don't want me to, but I miss home. I miss
Minnesota. You need me to be happy, but I want my old friend, and my
hockey team. I wanna go home. Please don't be mad.
[Riley's mother and father stare sadly at their daughter]
Mom: Oh, sweetie...
Dad: We’re not mad. You know what? I miss Minnesota too. I miss the
woods where we took hikes.
Mom: And the backyard where we used to play.
Dad: Spring Lake, where you used to skate.
[Riley breaks down in tears]
Dad: Come here.
[Riley, her mother, and her father all embrace in a group hug, consoling Riley]

Borrowed

Jenny here. 

It’s been a big month for us.  Medically we are still in limbo about a few things and have a specialist appointment this week to try and sort those things out.  So, you guessed it, more procedures and scans.  They are making sure to rule out any other cancers but no appointment was needed ASAP, so that's a hopeful sign so far.

Overall Wils energy is very improved. You can hear it in how often and robust his laugh has become. He's taking charge of household chores as much as he can muster. I'm so very thankful for the help. You’ll not hear him complain much, but the neuropathy is constant and still wears on him.  He keeps trying though.  And keeps going. 

Socially, in the past few weeks, we have had friends visit from out of town, visited the Perot Museum for a second time, hosted a Walking Dead marathon at our house, saw drive-in movies, and took a trip out of town to Eureka Springs, AR for a few days with the pups along for the ride.   All of these events have given us opportunities to [try and] let loose.  To feel a little bit like “regular folks.”  And I’ve learned it’s something I, in particular, am still working through.  More than anything I want to be regular, but even these slices of normal don’t add up to regular in the way my heart can sometimes can still ache for...I love our little life....pain inevitable, struggle optional…this I know, but struggle is still what I choose sometimes as I navigate through a field of emotions.  I am not always patient and kind in my moments of anxiety. 

Wil doesn’t say it often, but when I admit I’m scared about having fun, out in the big scary germy world, because all of it involves risks I cannot deny, he echoes back.  He gets it and feels it too.  And I so appreciate our mutual candor, grouchiness, and support we have between us in these new times. 

Together. We push through and there are these glorious moments when I almost forget that this is a living, breathing miracle to be here doing these things.  I like the forgetting part sometimes because it’s a less emotionally charged state of being.  It’s comforting to slide into the well worn regular complacency most of us live in each day...like blue jeans you’ve had for years.  And it’s not a bad thing, I don’t think.  It’s like a respite.  Living in the moment for his mere mortal is wonderful...dreaming, anticipating the future a true blessing too. I start to see us down the road in this life, moving out of DFW, leaving the hustle and bustle of the city.  It's like every vacation before cancer. Freedom. 

But then I see him walking slowly, struggling with his feet, needing to take his time and watch each step since he can’t feel his feet.  I watch his face and mood, trying to stay chill…with himself...he’s in pain of some sort nearly 24/7...those chemo effects still linger and may always be there (although I hope it will lesson in time).  I see the acknowledgement on his face that while these sweet victories of vacation, social time, and travel are amazing, they are also reminders of what is different now...of what has been lost…of how this new body can't do everything he'd like it to....all colliding at once.  

This.  Watching him. It leaves me in a solemn space between inspiration and sadness and hope and heartbreak...all colliding at once. 

I wanted to title this blog “Untethered.”  I had broken my cell phone a few days before we left town and decided to take myself out of the land of social networks and availability until I got back and could get a new phone.  It was nice to be “out of pocket” (as my Texan friends would say) for a few days.

Crossing the state lines of Texas into Oklahoma, then into Arkansas…incredible.  We have not left an hour radius of UTSW in over 2 years.  Despite the anxiety, our time off and trip were needed and wonderful. 

Eureka Springs was all I had hoped for in a tiny, Victorian home, an artsy place in the middle of the Ozarks.  I could really see myself living there if I had a job that could relocate.   I have these fantasies about a little 800sq foot house away from everything.  Peace.  Quiet.  And the Ozarks provide the most gorgeous back drop for this dream.  Crooked, steep, winding streets...and trees everywhere! 

Sidenote:  All my life with Wil, when shopping for cars, I could never get excited about a specific model until I made sure Wil's long legs could fit into the drivers seat. And it's ok. We e always managed to compromise. These days, when we think of leaving Texas, I can never allow myself (yet) to dream about relocation without first seeing if a BMT transplant center is close enough. Can't we just pack up UTSW with us wherever our hearts lead us to go?  It's still early in this new life...(Jenny, just take a breath!)...and we are not anywhere near ready to let go of supports we have here yet. But I can't lie. I looked up cost of living in NW AR. I'm smitten. So we will definitely be returning for another visit. 

So we're not untethered. I've always fought that feeling of being tied down. (You should see my resume!  I have loved contract work because I can come and go...to a bunch of jobs!). So I still struggle to find that same freedom space under the new rules of this life. This cancer thing...it's something you carry with you forever. It's something, at least presently, we work at gaining stamina to hold while also moving forward. Each moment feeling a little more borrowed than before you had it. 

Borrowed.  That's the word. That's what these snapshots, this new construction, feels like. It's what it has always been though. For all of us. And we're already, despite the fear of time being too short, despite worry that "the loan" won't be as large of a sum as we had hoped, that we continue to soak up all we can...in most ways, most of the time...to love the actuality of this new life must accompany the acknowledgment of the borrowed time we all take as we live it. If that makes sense. 

For now we stay the course and plan a few more short getaways. Work on letting go. Work on being with the process.  

Stay tuned. Clark's. On the loose. 

Much love. 

Thornecrowne Chapel

Christ of the Ozarks

Leatherwood State Park

Beaver Dam

Dinner on top of the Crescent Hotel (America’s #1 haunted hotel) while taking in the views. Can you spot Christ of the Ozarks?

During the rainy times and the evenings we cuddled up in our A-frame cabin at Pond Mountain and even managed a slight hike to the pond with the dogs.  As usual Tyson was not a fan of nature and bugs. He preferred his view of the Ozarks from inside. Violet however, ran and rolled in mud. 

Happily Ever. Now. 

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.