My last encounter with the health care system at its worst, Bloomington Hospital ER, is being counter-balanced today by my appointment with my oncologist.
I usually come with a list, sometimes an NYT article I've read, sometimes a myth I need busted. We laugh, we sing, we braid each other's hair...no, not really, but compared to sitting in an ER listening to people who don't know me opining upon my prognosis, it's great to be with someone who follows my case and can put things in perspective when that's exactly what I need.
Today, we poured scorn on the NP who frightened me about my lungs. There's no unspoken-of cancer or a tumor there that no one has mentioned to me. There was just the ill-formed judgement of an NP who needs to learn when to STFU. I did learn the price of pneumonia though--my right lung is now not a terribly useful thing, and it will take a while for the left to come completely back to normal. This explains why I'm winded doing simple things, and the fact that I'll have to baby myself a bit if I want to do anything physical in the Spring planting season of 2016.
This is not what I wanted to hear, of course, but it's one of those things I already knew in my heart but didn't want to acknowledge. Much of this came up in a discussion of future therapies, notably immuno-enhancing treatments, a group of which are emerging for head and neck cancers.
That's great, but I've preliminarily ruled them out based upon my new rule of not engaging new drugs or therapies where the benefit/risk ratio is lower than 65 per cent positive/ 35 negative, as unengageable. I say this knowing that it knocks many possibilities to the wayside at the moment, re-saddles the horse of conservatism, and seats me clearly on Old Tex, the horse that would like to run, but is too old to pursue his old haunts on the race course. In this cause, I invoke, the Price Rule, which now states that excessive risk has never worked for me in this fight, it has only distracted me while my ass got pummeled by the bad luck of risk-taking.
On that conservative bent, I returned to chemo today, ready to start a few weeks of observation on my lungs, my breathing, my reactions to the regimen--it's not changing yet. Still Erbitux and 5FU, hopefully helping my left lung to leave its state of inflammation, to hold the right nodule back (it was a pea, now it feels like a small walnut). I'm sitting here with Erbitux dripping into me, and I'm tired, so very tired. I'm hyper-sensitive to feeling breathing right now, so unless it's perfect, I can't easily fall asleep. Last night, I managed to get to sleep, but not stay there. I popped up at 3am. I'm tired in my mind, an endless calendar of appointments ahead of me. I wonder what I'll do this Winter when it's so difficult to breathe anyway, and something must be shoveled.
There are new concerns--is there a tumor developing on the left chest wall? chief among them. Zeus may have eaten his children, but he has nothing on me eating my own body into oblivion.
It's true that I'm not scared as much as I suffer from seeing the picture in parts, and rarely the privilege of seeing the body in total, the tumors catalogued and verified, everything explainable and even risible if I think hard about it all. It is more difficult to be brave if you don't know precisely what you're brave about, how much bravery it will take to Superman-stand against this stuff as it tried to colognize Gotham. Wbo knows? There's no right or wrong answer.
I am among friends, in restarted chemo, people who missed me while I was gone. This time around, I've had scans and blood draws to keep ourselves in contact, but that's not the same as my every Friday at 8am schedule I had been keeping. Back to that, empowered by small works of fact, I keep up a small but mightly push up Sisyphus Hill. It's the least, and just about the only, thing I can do.
And I call on peace and light to come back, on my spirt guides to teach me grace. I'm practicing being gracious while my underarsm throb as they are right now. Pain as the reminder that I'm alive. My breathing the rhythm section of a band that shouldn't be playing right now quite so well but is, pulling me downfileld
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