The health of Sam’s blood is measured in weekly counts. Where are his hemoglobin (red blood), neutrophil (immune system) and platelet (blood clotting) levels this week? How do they compare to last? His electrolytes are carefully charted, and low levels are boosted through pills, IV drips, and even homeopathic sprays. The contents of his bone marrow are regularly extracted and subject to scrutiny so detailed that the sample is sent to Washington and takes weeks to get results back to us, all the while creating points on a graph that lead to decisions about Sam’s care, treatment regimen and prognosis. His Alaska doctor calls his Wisconsin doctor regularly to check in – reviewing test results, ordering treatments and future tests, and balancing complications.
In some ways this is agonizingly thorough, but in others it fails to consider some of the most obvious effects of his condition.
The amount his tacrolimus dose causes his hands and gut to quiver at various points during the day is hard to quantify. Same with the degree to which the prednisone makes him manic and unable to quiet the running to-do list in his head. It makes him irritable (or “agro” as he calls it). The “episodes” he has as a result of the chronic Graph Versus Host disease – the ones that put him in the fetal position on the couch for hours on warm, sunny Saturday afternoons – those are shared at the clinic, but immeasurable. The hours spent on the phone with insurance companies are often simply lost, usually proving no solution or progress. A face with uncharacteristic swollen cheeks and patchy hair stares back at him when he looks in the mirror.
This all has to do tangentially with Sam’s cancer, but it’s hard to track or report most of this. Much of it is not clinical, and it’s way more complicated than blood counts, data sets and doses. It all adds up in difficult and emotional ways, but it’s no one’s fault and there is no real solution – right now at least.
Collectively, the care and drugs provided to Sam have saved his life. But they have also changed our life in unforeseen ways. The side effects and evolving complications make long-term planning scary. Should we buy a house? Start thinking about having kids? Should we even encourage friends to visit from the Lower 48 next summer? Should we set a date for our wedding? Can we start committing to work trips again?
I never planned to write this blog post because seriously, how can we complain? A year ago, we were living in the hospital, Sam was barely functional and our daily routines had nothing to do with enjoying anything. Nothing was normal – life was literally focused on survival first, and passing time second. We’re so far from that now; it’s hard to accurately recollect the details of those weeks and months. Thankfully.
We’ve gone on incredible fly-out fishing trips and done all the adventuring Sam’s body allows in places more beautiful than some experience in a lifetime. Sam’s gotten back out on his mountain bike a few times. We’ve flown to the Chuitna and visited with Grammy and Larry in Beluga sipping iced tea and eating the world’s best smoked salmon dip in their cabin. We’ve enjoyed the late summer dusk around a campfire with good friends, and gone to bluegrass concerts, and made brunch on lazy Saturday mornings. We’ve laughed a lot and we’ve been keenly aware how lucky we are do it all again.
But if it were just you and I having coffee and you asked me, “Jenny, how are you doing?” I’d say tired, and still really worried. I’d say I wish we would have been better prepared for how hard life would be after returning to Alaska. I’d say I wish I had more patience and sympathy, and I’d probably reflect on the times I ran out of it when Sam needed it the most. I’d question whether I should admit any of this to you, but acknowledge that not sharing it is way more difficult than the vulnerability of admitting that things are hard.
Our trip up to Alaska, before the chronic GVH set in, reminded us how good our life is and miraculously gave us the perfect break from thinking about all this. I can still see the sunsets over the vast open landscapes of the Yukon, and the undisturbed waters we paddled in British Columbia. I remember how at ease we felt.
But when Sam got sick a few weeks after crossing into Alaska, things got so much more complicated than we anticipated again and we can’t help but worry that is how they’ll stay.
Our life is still full of beauty, joy and comforts that we acknowledge so many are not afforded. Since his condition will continue to evolve, for now we’re focusing on cherishing the time we do have huffing up a mountain, walking Birkie around the block or eating a good meal. Though different, they’re still sweet – maybe sweeter now than they ever were before.