Tuesday, March 25, 2014

An overdue update

Since Greg has been hogging the blog lately I figured it would be good to check in and let you know how things are going from my seat.

We've been in Seattle for almost four months now. Not sure how that happened but it's Spring and here we are. The infamous rainy season has been relatively mild and there's been enough light - at least a couple of warm, sunny days a week - to keep me from becoming a bewhiskered recluse. We're psyched to have missed the Polar Vortex back East and the warm weather seems to agree with Greg's skin. It makes me happy that I can comfortably go running with my dog in February, or take Briar to the beach, without suffocating myself in layers. We love the city itself, too: progressive, quirky, lush, gorgeous and endlessly filled with things to do and places to stuff our gullets.

In many ways, though, our lives remain on pause. GVHD is an ever-present demon that plagues my husband. In these few short months, its progression has turned his body into an old man's; frail, slow and aching. Friends and family would be shocked to see him compared to six months ago. Retrieving cereal bowls from the cupboard, scratching itches, moving quickly and holding our daughter are no longer options for him. His skin and fascia are hardening; each movement brings the dread of being in pain, the mental exhaustion almost as great as the physical one. What's worse, the fear that this won't reverse, that Greg will be trapped inside a frozen body forever.

With this lack of mobility, a weight on me to pick up the slack - both psychically and emotionally - saps my spirit and energy. In turn, Greg feels guilty, which makes me feels guilty. It is a predictable cycle and one that we are thankfully compatible and patient enough to work through. In the most trying moments, I am always proud of our maturity and respect for one another. We allow ourselves to be frustrated but take a breath and continue to endure. This experience is the definition of endurance.

Getting care in a new place has its frustrations. The new system is designed for things to happen cautiously but slowly. What would take a night or weekend to resolve in the past now takes weeks. This makes me very anxious. I am putting forth a conscious effort to avoid slipping back into pre-transplant mode: unchecked anxiety, attempting to control the uncontrollable, reading too many medical journals to find the "right" treatment (with this disease, each current treatment only brings a 30 percent response rate, so the is no "right" treatment - it's trial and error). I want to strike the balance of being an effective advocate for Greg while trusting that everything will be okay if we just let the doctors do their thing. That's hard when treatments take up to six months to work. It's devastating to watch someone you love in pain every day and there not being a way to fix it.

It's not all bleak, and we are managing to make the best of things, despite near-daily doctor visits. My parents were in town last week and we played tourist with them. Greg and I managed to escape down to Portland and had an all-too-brief but lovely couple days there while my parents basked in the glow of nonstop toddler time. Also, WE BOUGHT A HOUSE very close to where were are currently renting and love the neighborhood. It's a bright, cozy remodel with a modest, open feel. We've decided to do a soft move-in since we need to completely furnish it. We'll have our hands full over the next couple months. 

This week we met another couple from up north who have been through a similar experience. Nick was declared terminal following acute, severe guy GVHD and had a miraculous recovery. He's dealing with extensive scleroderma, like Greg, but has responded well to novel treatments and, while not 100 percent, has pretty good mobility. Nick is an optimist and fantastic writer. With his permission I would like to share some of his poetry about his trials of illness in the future because he captures how it feels in such a beautiful, honest way. I'm so happy we found them.

Neither of us are working and are fortunate to spend our days together. (I don't think we've ever addressed this on the blog, but in case you're wondering how we manage to support ourselves financially, a portion of ownership of Greg's family business was passed on before he got sick and he's been able to keep insurance that way. Talk about fortunate. Oh, and he was smart enough to get cancer insurance before any of this happened. Seriously, people, the odds are good you'll get cancer one day and it's a smart investment.) I've thought about looking for work, and, in fact, a part-time opportunity for a dream job may line up at some point. I'm in no rush given everything that's going on but continue to struggle with not being able to tell people what I "do," as ridiculous as that sounds. I am learning to let that go, slowly, but it takes some rewiring. As a new friend reminded me recently, no one, as they age, looks back and wishes they had worked more. They regret not having spent more time with family. So we're lucky that way.

Speaking of family, my little shadow, Briar, is coolest damn kid around. She turns 18 months this week and is becoming such a little character - giggly, inquisitive, and delightfully mischievous. She's up to about 15 words now and has started speaking in two-word sentences. She joined a multi-age cooperative daycare one day a week that I attend with her and it's been really exciting to see her interact with the other children. She handles bullies with disregard, doesn't cling to my leg and is generous and loving with her peers. This is my favorite stage in development so far, despite the sassiness (think we've caught a case of the terrible two's a bit early), and we look forward to the next milestones. We have, sadly, decided to pull Briar out of preschool for the rest of the year because Greg caught an RSV infection that is difficult to fight off while on immunosuppressants. We know she has to get sick at some point but it's not worth threatening Greg's life. We anticipate this will be a challenge in the future and just need to get creative. Fortunately she has two other babysitters who we love and sees them a couple days a week.

I would be remiss not to also mention the superheroes Aunt Gina and Uncle Derek for all the help they've given us since we arrived. They've both put their lives on hold for us, usually at least once a week, to lend a hand where they can. We sure do miss having all of our family close by but count ourselves lucky to have them in our lives. Gina even made this spectacular video for Greg to celebrate this transplant-iversary. Good stuff.

I'll end this post with a completely random but fun fact: Someone from the CTCL listserv posted that Mr. T also has cutaneous T-cell lymphoma. Ordinarily I'd pity the fool but since I have an idea of what it takes to fight this disease, I give him mad props:

1 comment:

  1. ha! you are the furthest thing from a bewhiskered recluse... {i think that happens year 8 here} :-) love this post! you are a rockstar darling one.