Yesterday was my weekly encounter with my medical team in San Francisco. It is now an increasingly contentious event because I no longer hide my belief that the whole bunch of them is guessing. My bouts of fatigue, nausea, and mind-altering skin reactions are in general no better than weeks ago. The difference now is that I actually heard the admission, “We don’t know what to do”. That is a dark satisfaction. It has been 431 frustrating days since they cleaved my chest. It has been 108 days since chemotherapy destroyed my bone marrow, among other things, and was replaced with somebody else’s. I am still a semi-invalid from it. I am less alive today than before the transplant, less alive than before they “fixed” my heart.
Meanwhile I fight with the medical industry. Thousands of dollars of bills have been misfiled by the insurance company (BCBS), pharmacies, and medical providers. As of yesterday I washed my hands of them, told them to figure out their own problems and simply quit paying the bills. I found just enough legitimate bills to cover with my medical fund (thank you). I am done.
I have worked each day to regain, against the apparent odds, some semblance of my previous health. It isn’t primarily about that thing I see in the mirror. It’s about beaches and mountains and deserts. It’s about being a caregiving partner. It is about feeling like a part of Earth rather than a visitor. It doesn’t matter… again.
Yesterday I was slammed back down against the mat. What should have been a celebration was simply another chapter of frustration and misery as they finally (at my fourth request) removed the painful chemotherapy port in my chest. Unfortunately it had been in place too long and was imbedded in scar tissue. I laid on the operating table fully awake as the surgeon tugged and cut for half an hour. My eyes were blocked from viewing it, but the dribble of blood I felt down my ribs and every minute too long correctly told me this would not be the promised superglue fix. The nurses could not understand why I was speechless when they said “It was a little tougher than expected and you cannot exercise or raise your blood pressure for two weeks without risk of a hematoma. Oh, and why do you have a scar down your chest? You look so healthy. Do you want to see what we took out of you?” No joke.
So today my body feels like it lost a street fight, in addition to all my other apparently unfixable symptoms. And Deborah is beyond reach and suffering with her own unbelievable challenges. She just flew back to North Carolina and is now 2697 miles from where I sit now.
I am spent. I have fought to be positive when the numbers were all against me, when even my allies became adversaries. And then about three hours ago, without a prompt, I suddenly realized that I had ticked off perhaps the biggest item on my bucket list. I had always wanted to test myself, to push to the very edge of all the mental and physical suffering I could fathom enduring, just to see what was there. It seemed like the scariest place in the world. I figured I would know that point when I got there. And when I got there I would then do something just as crazy… keep going.
I am at that place. I am in pain, I am in misery. I have no faith or hope in a positive future. And I can no longer recall what if feels like to be otherwise. My life really is a wreck – one simply cannot deny it.
So today I plugged in my headphones, cranked up the volume, and just took a step. Right over that edge. And then I walked for an hour. I also cried for that hour. And I am crying now, over this stupid keyboard. But tomorrow I will probably get up and do it again, and have another good cry before getting on with it, and I have not the slightest idea why.