Apr 24, 2020 Latest post:
Jun 12, 2021
Living with Cancer in the Time of Coronavirus.
Welcome to my CaringBridge site,
Many of you know that my adventure with cancer began late last summer. Through a labyrinthian path, I learned that the cancer had started in my right kidney (surgically removed) and had migrated to my lungs. I now live with a Stage IV kidney cancer diagnosis.
I’ll use these posts as a way to update all who are interested about the stages of my adventure. I’d hoped to post stirring messages that inspire and uplift - to be able to perhaps share with you how grateful I am for this disease and how it’s opened up my life. But now I say hogwash to that. What I’ll post here will be more brutal and raw. I’ll share my fears and my more than occasional lapses into paralysis and sleeping binges. I’ll share ruminations about my regrets. I’ll share ways in which I distract myself. And I’ll share the terror I feel, not at the prospect of dying – but at the prospect of dying in pain and out of control. It won’t be a pretty picture and if it were a movie, it might carry an “R” rating.
I’ll start by sharing where things are now. Some time back my oncologist presented me with a treatment option: a course of once-every-three-weeks intravenous infusion of a chemical concoction intended to rev up my immune system, combined with oral meds to be taken once every 12 hours. The possible “side effects” gave me the willies: awful stuff potentially affecting every organ in my body, including my skin. The alternative option was for palliative care only, letting the cancer take its course. For some time I was so paralyzed with fear that I couldn’t make a choice, in effect opting by default for palliative care only. But a week ago I decided to undergo the treatment offered.
A week ago Thursday I had my first immunotherapy infusion, which took only about 30 minutes and was quite seemingly benign. I suffered no ill after effects, and my Medicare covered the costs.
The oral meds, though, are something else. I learned to my shock that they retail for about $16,000 per month and that even with my insurance, the co-pays would total close to $3,000 per month. Infuriating, no? that this is what so-called health insurance provides? But I lucked out: my treatment center in Missoula reached out and was able to find a charitable agency that arranged to get me the oral meds for free. I’m now awaiting their arrival, but won’t begin taking them until after I see my oncologist during my immunotherapy infusion coming up on Thursday, 4/16.
Strange thing is, I feel pretty much okay (at least physically). The cancer hasn’t yet begun to present itself in obvious ways. I try to enjoy the time I have and do whatever work I can to fight climate collapse, or at least raise awareness of it. I’m quite fortunate to have landed a place to live with a friend in Missoula, MT in her spare basement bedroom. I hunker down best I can like the rest of us and marvel at living through these times that are literally unprecedented (a pandemic in the internet age, compounded by climate collapse). I’m excited by the work I get to do with Extinction Rebellion; helping to form a local chapter in Missoula and working with their international Media & Messaging Team.
I’ll post more about that as I go along. But for now, this feels like enough.
Hoping everyone and all your loved ones are staying healthy and safe.