I saw my ENT (Ear/Nose/Throat) surgeon today for my semi-annual post surgical checkup.
He asked how I was doing.
He got an earful.
I told him in very uncertain terms that prior to the surgery, if I knew what kind of condition I’d be in 18 months later, I’d never would have gone through with any of it. I told him my quality of life took a nosedive and it seems that now every other day—brings something new and unwanted.
“What specifically?” he asked.
Seriously?
I said, “I can’t eat. I can’t socialize over dinner with friends and family any more. Any dreams of Ben and I going on an Alaskan cruise or visiting Japan are dead. And then there’s this,” I said, raising my shirt.
“It’s in your chart,” he said. “You’re on Duplixit and prednisone.”
I nodded and continued, “When we were discussing post-surgical treatment, chemo/radiation, etc. immunotherapy sounded like the best course with the fewest possible side-effects. When you said ‘most common is a skin rash,’ this is not what I was expecting.”
He agreed that my reaction was particularly severe, “maybe one in a thousand.”
He then asked how the prednisone was working.
I said, “It was working great—my dermatologist took me off of it because it’s now suppressed my immune system to such a degree that it’s allowed the long slumbering Hep B virus—that’s been in my system and minding its own business and not causing any trouble at all since 19-fucking-85 to start waking up. And now I have to deal with that!”
He responded with a facial expression that was the equivalent of shrugging his shoulders. I mean, what could he say? He paused for a moment and then asked something…odd. “But do you still find something in your life that brings you joy and keeps you engaged and interested in life?”
I told him I did.
“Normally I would order a PET scan at this point to make sure nothing new has appeared, but…”
“My oncologist wanted to do that as well,” I interrupted. “Could you just do it and then have the results sent over to him?”
“If we get a PET scan, there’s a high likelihood that there will be things that light up in the necsk because so much has been done in that area. For that reason I’d also order a CT scan done at the same time so I can check against it. And then if we find anything we’d go in for a biopsy…”
I shook my head. “Nope, nope, nope. ” I said. I’m DONE. No more procedures. No more surgery.
“I understand,” he said. “As your doctor, I have to think about the cancer, but I also have to take you into account. If this is how you wish to proceed, that’s what we’ll do. So, let’s plan on seeing each other again in six months.
And he slinked out of the exam room like a dog with its tail between its legs. I don’t think he was expecting to actually encounter a patient who stood up and questioned to his godhood.
While driving home, I got to thinking about this and my still whacked out immune system, and I did one of those quite “of the moment” things: I spoke to my immune system out loud.
“Hey…you in there…now that I’m off the prednisone how about you go back to doing what you’re supposed to be doing and pay attention to that HepB virus and any lurking cancer cells and leave my fucking skin ALONE and help it heal?!“
As I pulled into the driveway I envisioned myself standing over my immune system and giving it a severe scolding. And then I thought, “If you can dream it, you can be it.”
I call it, Mark Delivering A Performance Review To HIs Immune System
I think that sums it up nicely.
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