After an amazing trip to Colorado and a great work trip to Juneau, Jenny and I headed to the Doctor this morning, nerves a bit frayed by weeks of waiting for results.
The optimistic news: The levels of leukemia in my bone marrow dropped over the three weeks between tests. I'm never fully out of the woods, but my Alaska Doc views this as a good sign that this is not indicative of a relapse. This is a huge relief. It means continuing to live the life I love here in Alaska.
The less good news: The nine month tests indicated some rather significant complications that can happen after a bone marrow transplant. This includes low immune system indicators and a high level of EBV (The same virus that causes mono) -- both of which make me highly susceptible to infection.
The good news on that front is that they are both treatable, but it does mean a lot more Doc visits and risks of getting sick. The high EBV is also compounded by the drugs that treat Graph vs. Host disease (the last thing that landed me in the hospital and is just getting under control). As my Doc explained this morning, it is "going to be a tightrope walk" to figure out the best way to treat this moving forward.
Thank God for the Docs who have dedicated their lives to trying to fix unbelievably complicated sick kids like me.
I'm going to keep this post short and simple. In the spirit of living, Jenny and I are taking the day off tomorrow to fish, camp, decompress and celebrate. It's already nearly midnight and I still need to pack the fly fishing gear, clothes, and rolling pharmacy that comes on all our adventures. I'll leave you with a few pictures of living life over the last couple of weeks.
Hope you're all enjoying the summer. Don't forget to carpe the f***in' diem.
Shit. The bright red blood pouring from my nose onto my hands as I entered the boarding line for my flight from Seattle to Denver could not have come at a worse time. This was not a slow drip. This was a leave-a-trail-of-blood-as-I-run-to-the-bathroom kind of nosebleed.
For anyone else, bleeding profusely into a busy airport bathroom sink as they call your name over the intercom for final boarding would be a monumentally bad day. At this point rolling through a nosebleed at the airport – even one so poorly timed – feels par for the course and almost inconsequential.
It’s been a rough few weeks. The Graph vs. Host Disease (GVH) that put me in the hospital for a week has slowly improved and I was discharged about a week ago. Unfortunately, the GVH resulted in mind-numbing fatigue, an inability to eat the vast majority of foods, crazy loss of weight and strength, and consistent pain in the gut that leaves me flat on my back or in the fetal position.
While working to recover from this we’ve been stuck in a Groundhog Day scenario of waiting for final results from the bone marrow biopsy I had in the hospital.
Unfortunately yesterday we received terrifying news that the test found a small amount of leukemia in the bone marrow. The only silver lining is that it is such a small amount that Docs are unsure whether it is indicative of a relapse or not. The only thing we can do is wait and repeat the test in a week or two then wait all over again for results to see if the leukemia is on the way up or on the way out.
Waiting is unbelievably hard and can reach a point of psychological torture; fighting the paralysis of fear can be all consuming. Being sick is physically draining and makes you want to shut down. But if there’s one thing that I’m more committed to than ever it is living. And let me be abundantly clear: by living I don’t mean not dying. Although it’s taken a long time, I’ve come to terms with the very difficult fact that I have very little (if any) control over how or when I die. In truth, none of us really do. As my dear late friend and amazing cancer fighter, Dennis Koepke, once told me, "All of us live in a world of statistics. Some of us are just much more keenly aware of it than others."
What I do have control over is squeezing every drop out of life that my body allows me to. So for the last few weeks I’ve been going into the office spending time doing the work that I love with people that I love. I’ve shuffled around the dog park with Jenny and Birkie, stopping to bend over or sit on the ground when the pain becomes too unbearable to walk. And when I had to make the choice about whether to get on a plane to travel to Colorado to celebrate Jenny’s Uncles Scott and Brian’s wedding – two people I love more than I can express – I decided it was an opportunity I could not pass up.
When it comes down to it, what’s the difference between being in pain at home or being in pain on a plane?
But the fact of the matter is that living life in my condition requires so much more than me being characteristically stubborn and increasingly reckless. Me being able to enjoy life takes a wife that has sacrificed every semblance of a normality to take care of me (crying on a plane again). It requires a team of doctors that patiently spend hours answering my questions and doing everything in their power to make me feel better. It requires my colleagues picking up the slack when I’m slower at work. It takes good friends sitting with me and keeping me company when I get bad news. It takes friends stepping up to help me run errands when Jenny’s gone and lining up to take care of our crazy Birkie-Dog when I jump on a plane last minute.
And when you show up to your gate late with tissue paper shoved up one nostril and blood flowing out the other, it takes two Alaska Airlines gate agents who immediately get you a box of Kleenex, call paramedics, and book you seats on two flights to get you to Denver regardless of how long it takes the bleeding to stop. It takes them going above and beyond, and sitting with you long after the plane is gone and the gate empty.
It takes four paramedics to pinch your nose, shove gauze in your upper lip to cut off the blood vessels, hold ice to the back of your neck and check your vitals. Four paramedics who were some of the friendliest and funniest people I have run across in a long time.
I think a lot of us have had a rough couple of weeks. I don’t know anyone who hasn’t been affected by terrible news that seems to greet us every time we turn on a screen. To turn on cable news or scroll down a newsfeed can feel like this world is full of terrible people doing terrible things to one another.
But this week the real world has reaffirmed my faith in humanity. Sometimes it’s hard to be vulnerable and ask for help. But when you do people are not only willing, but eager to do so. And the fact that someone in my condition can travel alone across this country and fully rely on the compassion of not only an amazing community of friends and loved ones, but also on complete strangers, it is proof positive that people are inherently good.
This world is an amazing place filled with amazing people. Sometimes it just takes bleeding in the boarding line to remind us.
So many of you have done so much for me in the last couple of weeks (and years.) I cannot thank you enough.