Day +19

Note to Day +17 self: what kind of hubristic statement was that? It turned out that I had a lot to worry about on Day +18: a seemingly interminable bout of gastrointestinal GVHD that left me completely exhausted and desperate. It had seemed so obvious that I had GVHD much earlier, but the one doctor who mattered was still saying no; is this new symptom really going to convince her? I told my nurses, and one of the junior attending oncology fellows, my tale of woe with what I’m sure seemed like pathetic self pity, but they listened respectfully and promised me that they’d advocate for me when the oncology team met.

And here, in this moment of intense discomfort, I had one of the more bizarre and intense of my very recent experiences with painkillers (and the effect of withdrawal from them), since some have asked me about that. Normally, the worst they do is make you tired, so it’s hard to focus on anything. Yesterday morning, however, when I was no longer under any drug’s influence, be it painkiller or sedative, and instead was in the grips of and endless rush from bed to toilet, something in my own obsessive literary education took over my thoughts, so that I found myself being lectured by what seemed like the ghost of Ted Hughes, the talented, charming, but rather violently obsessive poet who married Sylvia Plath (who ended up committing suicide, as did his second wife). Anyway, this ghostly Hughes really had a lot to say about many of his best early poems, criticized the way I’d been teaching them, and then went on to lecture me about the role of brotherly love in Norse Mythology, as if my failure to address these mythological narratives in my blog or poetry were somehow a personal offence to him. This kind of thing doesn’t happen to me in periods when I’m not taking painkillers on a regular basis, and clearly my body was angry with me for not giving it the “fix” it wanted; these drugs can jump you even when you’re in withdrawal from them.

Anyway, as these nightmares were going on, well into the morning nurse changeover, a nurse popped her head in and announced that I’d be starting on steroids for my GVHD, just like that. Instead of feeling fearful at the confirmation that I had GVHD, I felt like shouting my vindication to the skies; very much the same way I felt when I was finally diagnosed with lymphoma, after months of private certainty on my part, and official hemming and hawing from my first oncologist. I wasn’t just inventing scenarios to gratify my fatalism; I had educated myself enough to know, in all probability, what my symptoms meant, and now the medical establishment had committed to working with me to address them. As numerous doctors and nurses have said to me since, I’m evidently the leading expert on my (admittedly unusual) type of lymphoma.

Anyway, what it boils down to right now is that I am already feeling much better, both physically and mentally, now that they are actually treating my condition. Nobody is sure when the tummy troubles will go away (I can assure you they’re still around), but a discharge on Tuesday or Wednesday could still be on the cards. As long as no new GVHD flare-ups. As my nurse said today, all the types of GVHD that I’ve had are curable and reversible. However, the list of non-acute GVHD manifestations is a short one, and I have pretty much exhausted it; if we can stop them in their tracks here, the fact that I have had them at all will actually be strong indicator that my new immune system is behaving rightly: like a well-trained guard dog, it is willing to attack anything it perceives as an intruder (including lymphoma). The more acute types of GVHD (more stubborn gastro problems, damage to liver or kidneys) do not have any upside of the “what doesn’t kill you make you stronger” type; like an abused or incorrectly trained pit bull, they are just bad news, pure and simple.

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2 thoughts on “Day +19

  1. I know this sounds crazy (and I have been accused of that) but your posts always make me smile. Not your suffering but your consistent sense of humor and hope! You are amazing and strong. Thinking of you daily. We are sending all the positive energy we can. Cheryl and Tom.

    Like

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