Wednesday, April 2, 2008

Body in mind

The night before last, I climbed into bed with my daughter and a sharp pain started jangling around behind my shoulder blade. I ignored it and went to bed. It was still there when I woke up. As I went about my business, it gradually began to dawn on me that hey, the shoulder pain is still there; there's some pain in my rib cage; and if I'm honest with myself, I'm breathing even worse than usual. 

Damn, I have another pneumothorax.

So what do I do? It's late in the day, hard to get admitted and maybe too late to see an interventional radiologist. Getting a chest tube in the emergency room isn't the worst thing that has happened to me, but I'd prefer not to repeat the experience. (If it becomes necessary again, at least this time I will know to not let the doc show me the tube kit, which includes a foot-long, panic-summoning needle inserter.) I'd like to call the doctor, just to be safe and all, but if I call liability and common sense are going to send me spiraling into medical intervention, perhaps up to including hugging a vinyl pillow and half suffocating under a vinyl drape as someone shoves a tube through my ribs with no anesthesia. We decide not to call; we'll deal with this in the morning.
I'm so sure that I have another pneumothorax, so convinced, that I start preparing for an admission. I take a shower and shave, so I won't look like a homeless person within minutes of being admitted into the hospital as usual. I pack a book or two, my ipod, a laptop with a couple of movies and a newly ripped audiobook. I even charge my cell phone. For me these are expedition-worthy preparations, so I start to convince myself that my lungs are probably fine since I'm actually somewhat ready to go to the hospital.
One of the many problems with a prolonged illness is that it completely chips away any sense you might have of bodily well-being. I no longer take much pleasure in my carcass; it's more like a very old car on a very long trip, requiring constant monitoring of tires, radiator, alternator, brakes and and a half-dozen or so suspicious rattles and wheezes. This kind of feeling is near universal. Burnt by strange pains and buffeted by bad news, cancer patients are at risk of reading any stitch in the side or headache as evidence of metastasis. 

I once wrote a note to someone on the online sarcoma community who was worried that his backache might be evidence of epithelioid sarcoma mets to the spine; I said, essentially, have your doctor check it out, but ES rarely spreads to the spine, so you probably shouldn't worry until your doc tells you to worry. You probably have a backache. It happens. (I was, and am, a big believer in outsourcing anxiety.) Another patient immediately added that ES can metastasize ANYWHERE and was capable of ANYTHING. Thanks, lady. So much for my little dutch boy attempt to reassure. The guy, of course, just had a backache.
Cut to this morning at the hospital: I do indeed have a loculated pneumothorax -- a couple of mini air bubbles that have managed to form despite my pleura being tacked to the chest wall by pleurodesis. So no chemo, but no admission either. The plan will be to look for improvement tomorrow and hopefully proceed with the chemo. If the situation is worse or the same, I may be looking at some combination of admission, chest tube and VATS. In the meantime, I get to sleep in my own bed and eat the lamb that P. brought over.

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