Reset button


Back at the cancer center this morning. My arrival here this morning was dramatic, chauffeured by my friend A, and I asked for a wheelchair from the car. This seemed to surprise the porter I see here every week who has only ever known me to walk under my own power. My man at the front desk, Quentin, was not there today. I was hunched down in the chair and J spelled my last name and it was misheard and I just wanted to die to get past the front desk.

On the way to the elevator we passed Dr S, my radiation oncologist. He seemed a little surprised to see me, his healthiest patient, so reduced. (Maybe I was projecting. This is after all his line of work.)

Phlebotomist B worked his magic on my desiccated vein. He never got the letter I mailed praising his skills, so I guess no coffee card yet. Damnit! The little I can do did nothing.

I declined to hop on the scale because it would have meant getting out of the wheelchair, and I wasn’t about to do that. I know I am thin. I know what I’ve lost. I’ve only spent the past two weeks horrified, hunched over the numbers in the dim 4 a.m. night-lit bathroom, wondering if my digestive tract would ever work normally again. If I could ever eat food again with any measure of excitement.

After a brief respite from pain on Saturday (which made leave-taking from Mom much less difficult), yesterday things got serious again. Bad, roiling boiling angry belly. No rhyme or reason to why, no link to anything I ate or did not eat. Pure inflammatory response in all of its hellishness.

Last night I waited until I thought the storm was over, brushed my teeth gingerly (toothbrushing makes me nauseous these days) and got ready for a night of sleep. It was a night of pure torment. I thought of bringing my pillow into the bathroom. I washed my hands 800 times. Every time I dried my hands I tried to summon some courage to go back to bed. Would I have been better off sitting up? No place would do. The only place that would have suited me was far outside my body. But that would have posed logistical and existential difficulties.

By 5 a.m. I was resigned to a white night, but I still tried some Imodium, on the off chance it would help me. I think it afforded me about 30 minutes of sleep before the roiling began again. Any fluid that passed my lips was turning immediately, horribly, to more abdominal pain. So I stopped trying to rehydrate.

Once you make that decision, things go downhill pretty fast. Any pee that comes out looks like dark syrup. You can maybe get your medication out of the jar, but you’ll sit there with it in your palm for a good half hour because you can’t reach the three inches past it on the nightstand to get the water.

At the stroke of 9 a.m. I called in. They told me I had better come in for an IV. I started reading them the riot act regarding the fellows who answer calls so incompetently on the weekend. My voice was a thin, wailing reed.

A friend came to take the kids to school, and once they were safely out of the house, I lost it. A was ready to drive us to the cancer center, but I couldn’t think how to get dressed. J had to dress me and he put up with my steroid-crazed critiques of his style of putting socks on. Once I was dressed, I curled up in a ball on my bed and just wailed. I was reduced, finally, to my most basic state – like a wounded animal. A final touch (which proved unnecessary, thank God) was borrowing one of Abe’s pull-ups in case I had any accident on the car ride.

J wheeled my chair through the labyrinth of the 9th floor reception area and the girl at the desk also looked surprised to see me not ambulatory. I started to think perhaps there was something very wrong with me. A strong hazelnut coffee smell permeated the waiting area and I willed myself not to retch.

Even though I hadn’t seen Dr P in weeks – during more routine appointments you see her nursing staff – she was there today. “You got the bad poopies!” was her opening gambit. Not the funniest opener, but I was in no mood to laugh much, anyway. She said that they’d put a stop to it all with the IV today. That I’d walk out of there. That sounded promising.

Then… she said something else. About it being the end of the road for me with ipilimumab. And perhaps the start of a new drug, PD1. I’m wary, but she says diarrhea isn’t usually part of the package. A rash is. A rash sounds delightful to me right now.

But the thing that probably made me the happiest to hear, in passing, was, “and you didn’t have a lot of disease there to begin with, so…”

My progress toward feeling better was pretty rapid after hearing that.

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