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.