Side effects

Last Friday I spent five or six hours being infused with a drug called Rituximab, or Rituxan, in hopes of curing my idiopathic kidney disease before it does permanent damage to my kidneys.   “It’s very well tolerated,” said the nurse who slipped the needle into my arm, using some perverse version of the passive voice.   I read the manufacturer’s information sheet she gave me, scanned a long list of mild-seeming side effects.   A dozen uses for it were listed, none related to the kidney in any way.   

The other guy in the infusion room was fighting death, and death had the upper hand, there was no way he was going to beat it for much longer.  He had a lot of stories, twenty-nine, Iraq and Afghanistan vet with a rare, incurable autoimmune disease he got after an IED attack (one in a million, he said, won the genetic lottery for that one) and not ready to fucking die.   

I left feeling fine, and grateful to be feeling fine.  I felt fine Saturday, and Sunday.  Monday and Tuesday too, for that matter.  Though, in hindsight, Tuesday I was feeling unaccountably weak, a bit of the old asthenia, it seems, as I took a slow stroll to Chinatown and back.  Asthenia was a listed side effect, it means weakness, it turns out.  Also, in hindsight, with my immune system suppressed, I probably should not have been on this crowded public conveyance late Saturday night.

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Tuesday’s delicious meal in an old Chinatown haunt, and the two mile roundtrip stroll, may also not have been the  best move, in retrospect.  Tuesday night I came down with a bad cold, which soon turned into the mother of all colds.  Was thankful for the snot channel I carve above my mustache, it came in very handy over and over as I went through a box of tissues.   Sleep was hard to come by, as breathing was a challenge in a lying position.   I got up many times during the night.  I coughed so violently that I pulled some muscles under my ribcage I didn’t even know were there.

I reviewed the list of known side effects, which included “night sweats,” explaining why my shirt was wet when I got up to make another cup of tea at around four.   Also alarming was the big spike in my blood pressure, consistently in the range just below where they urge you to seek immediate medical attention whether you have other symptoms or not.   It’s still very high, apparently another known side-effect my doctor was surprised to hear about when I checked in with him last night.   5% of those treated with Rituxan get this effect, apparently, and of those, 60% are in my age range, but the doctor probably doesn’t study the FDA reports on-line the way a worried patient would.  And, dramatic but largely forgotten now, the left calf that swelled suddenly to the size of a lumpy football, though that righted itself overnight.   Well-tolerated, of course, being a relative term to describe an immunosuppressive  drug that doesn’t completely knock the shit out of you, like the stuff my companion in the infusion suite was getting.   

As I wondered why my back teeth were suddenly aching Sekhnet reminded me that flu-like symptoms were on the list and that this sometimes happens when you have a bad flu.   I suddenly thought back to a visit with my cousin Eli, not long before he died, of a cancer his children thought it best not to tell him was killing him.   He had a fentanyl patch on and complained of the side effects.   “Read the fucking list,” he said, handing me a long scroll as I walked in.

Dry mouth? yop.  Constipation.  Yep.  Diarrhea?  Yop.   Heart palpitations, painful urination, trouble breathing: yop, yep, yip.   I must have read the first fifty of them, every one of which he had.  I got to irritability and he snapped “what the fuck do you think?!!!”  He didn’t have that much longer to be irritated, as it turned it, he was dead a week later.

Thankfully all I’ve got is a bad cold, elevated blood pressure and a bit of the old asthenia.  Going to try to get some sleep and then call the nephrologist, see if this miserable cold takes me off schedule for the second and last round of this wonder drug a week from today.

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