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!
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.
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