Cancer is a humbling experience. I know you’ve seen all those television commercials about being “empowered”, “fighting back”, “taking control”, “getting angry”. In fact, the only thing you’re bringing to the party is your immune system, and if that was doing its job you wouldn’t be in this mess in the first place. Beyond that, your tumors are what they are when you are diagnosed, and the state of the cancer care system is what it is. And the two of them are going to slug it out. And you are going to take the punches. From both sides. It’s kind of like Rock ‘Em Sock ‘Em Robots but your robot is nonfunctional. Your role in the treatment process is to stand up and take the ongoing beating.
I bring this up because I had some kind of odd setback this week. On Monday I started feeling a little weak. By Tuesday I was seriously weak, and my muscles—what’s left of ‘em, which isn’t much—hurt. Tuesday I left the office early despite a crunching deadline, fell asleep at 4 in the afternoon, woke groggily at midnight, then passed back out until 10 Wednesday morning. Wednesday, when the deadline was REALLY crunching, I left the office at 3 and passed out at 6. Thankfully I had willing and competent backup. It’s now Friday morning and I’m at the law offices in D.C. where I need to deal with the deadline report. Feeling somewhat better, still not right.
Possibly I’ve contracted a virus. I doubt that my immune system is functioning very well at the moment. But I don’t have other symptoms. My thermophysiology is totally screwed up, but that’s been true for months now—ever since my weight dropped below 230.
That might be the key. The transition from tube-feeding to eating by mouth like a normal person is not going well. For one thing, my oral cavity is still somewhat dysfunctional. My tongue and teeth do not work like a well-coordinated team, making it difficult to get a food bolus roped, corralled, and behaving properly. Then, my throat is still sore, and my epiglottis lets a little portion of every swallow dribble down the respiratory tract vs. digestive. Also, the real fallout of having salivary glands destroyed by the radiation are beginning to manifest. Putting a bite of food in my mouth does NOT trigger that comfortable pre-digestive rush of of moistness. Rather, it just dries things out, making the texture of any solid or semi-solid food resemble shredded cardboard. Finally, by the time I manage to get 3 or 4 swallows of anything into my gut, my hunger abates and I can’t eat any more.
So I’m guessing the deal is that my weight dropped to damn near 190 lbs earlier in the week, my blood sugar probably cratered, and I passed out. So I’m rebuilding my diet again. Baseline is 6 cans, or 2400 calories worth, of United Nations emergency rations via gut tube. On top of that I have to add enough calories by mouth so that I can start to cut back the cans. Best bet so far has been milkshakes. Half a blender of ice cream with a big splodge of milk has a pretty high calorie content and I can choke most of it down. Had one this morning, despite having to leave for the train by 0600. I’ll do another one dinner time, after pumping in some cans (couldn’t bring myself to lock myself in a bathroom stall at the law firm to pipe it in. Instead I slurped diet Coke, ice water, and nibbled at some fruit. Lunch was nicely catered chicken, beef brisket, rice, vegetables, and salad. Couldn’t touch it).
Sigh.
It is now Sunday night. I am still as weak as hell, and my muscles and joints are universally sore. What the hell?!? I have no idea. Fortunately I see my oncology surgeon this week. He’s Chair of the Department and a full professor at Hopkins, along with his clinical position at the Greater Baltimore Medical Center. All that an he’s a pretty young guy, 40-ish if I had to guest. High energy. Brutally honest, which seems to be (thankfully for me, I much prefer brutal honesty in all things in life) universally characteristic of the cancer people, at least the throat cancer people, at GBMC. If he can’t figure it out, he’ll call in the Radiation Oncologist, the Cancer Pathologist, or maybe an off-team House-like diagnostician. For all I know, maybe I’m supposed to hurt like this at this point.
But that really doesn’t seem right. It’s been something like 11 weeks since my last radiation/chemotherapy doses. I’m pretty sure I should be past the overt effects of same.
Or I would be, if a couple of the attorneys at Friday’s meeting in D.C. didn’t have relatives in pretty much the same boat that I am. One guy’s brother in law took 2 years to get back to where he could maintain his weight on an oral diet.
Icky. Now that I’m back at work, of course, much of my time is no longer under my control. Hopefully I can keep slipping away when I hurt too much to function. Or Dr. H can figure out what the hell on Wednesday morning when I see him. At a minimum, I expect him to schedule my PET scan and neck dissection.
That’s the one truly silver lining in this otherwise sort of grey post-treatment rundown. No signs of incipient tumors in any of the places that Dr. Z says they should manifest if they are going to. You know I’ll do what needs to be done to save my life, but I sure as hell hope that doesn’t include more radiation and chemotherapy. You think I whined the first time through… .
Fresh material up across the weblog empire. Please surf on over to http://docviper.livejournal.com/ for a festive seafood dinner from the grill, http://theresaturtleinmysoup.blogspot.com/ for some movie reviews, and http://sustainablebiospheredotnet.blogspot.com/ for a new essay on Armed Conflict and the Environment. Most of all, remember I love you all, and I’m grateful that you’re taking the time to read this stuff. Thanks!
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