Look who has joined the modern world: Chemotherapy!

It turns out there's a reason I feel better off the Cellcept (that one kidney drug I keep railing about.) Cellcept is a motherfucking chemomotherapy treatment. It's basically a daily dose of chemo, in pill form. No wonder I get so sick on it.

Also, you know what's more aggravating than hold music? Hold music that breaks in every 15 seconds to let you know you're still on hold. I can hear your hold music. I already know I'm on hold. And that pre-recorded voice always leads to a brief but irritating hope that I've finally gotten ahold of a real person.

Penlessej, that explanation of how the potassium blocker works makes PERFECT sense. So apparently I'd been overworking my kidneys and my body prioritized the focus on my kidneys instead of my heart (leaving it to work harder to cover the slack). I had no idea. It's annoying, but of understandable dire necessity, that our bodies triage themselves. Potassium is one of the most difficult electrolytes for me to not over-consume and it was showing.

Thank you for explaining that.

And Cinema, I've been thinking about your question. About how to define "better." I really haven't figured that one out yet. I know I want a...an acceptance, I guess. A better way of learning how to live with this disease. How to schedule around it, how to be less anxious and frustrated with all the treatments, how to make it simply something that I deal with (like my bipolar) instead of something that DEFINES me.

I know this will take time. Lots of time. Like you said with your own experience, the symptoms are so goddamn prevalent. And right now, it is soooo easy to feel like just a series of symptoms and setbacks. "Better" would be feeling like a person most of the time.

That's as far as I've gotten with the idea. But it was a profound question you asked and made me start thinking about how "the small moments" are brief respites that my mind and body so desperately needs. A kind of "take what you can get and know that as time goes on, you'll get more" sort of attitude.

There are so many other comments to get to. I am making a concerted effort as I can, day by day, to get to them. Ben, you've written so much about your own health issues and I feel you are such a great source of comfort and solace. And yep, Tom, the dude is the most coldest and clueless of anyone I've ever met. I can - and will at some point - go on and on and on.

Fairy, Gonzo, Harvey, Blozor, so many friends. So, so many of you. I am blessed to have so many friends that it can actually take time and effort to catch up on the support I'm being given.

Of all the things in life to be "over-burdened" with, this is the best kind that anyone could ever want.

This entry was originally posted at http://quirkytizzy.dreamwidth.org/1072920.html
A med for chemotherapy? Well, then the nausea is no miracle. Chemotherapy destroys your whole immune system to make it able to be rebuilt a new; and lasting nausea is a symptom that seems to be deeply connected to big changes in it. Otherwise it wouldn't appear so often as a side-effect of drugs who limit the activity of the immune system AND, at the same time, in pregant women whose hormone household is upside down anyway just from natural causes.
Since I was called out by name...

You were not at all absent when I was sick, so there's that. My only excuse is that I'm hella far away. (Related: thanks superlatively for keeping L. in the loop. He appreciates it.)

"New normal": been there, done that. Dietary restrictions, too, but not on any scale like yours and at this point, the consequences of cheating are not so immiserating as long as I don't get carried away. The work at the top of the list is weight loss. (Doing extraordinarily well there of late, what with cramming a day's worth of light eating into an entire week after throwing out my back.)

I'm sadly not a stranger to edema and kidney troubles, though of course my frame of reference is narrower than yours has become.

...And finally, the medication upon which I rely to manage my body's underperformance on a day-to-day basis, is also a starring castmember in your own routine. The way I figure, I would be committing awful negligence not to relate my experiences with it.

The most important thing for me is to be part of the chorus - to be as present as I can within reason, and to remind you that you're neither the first nor the last to run up against troubles of this degree. Beyond the danger of isolation lies the danger that you'll wallow otherwise - you're no wallower, but isolation encourages that sort of thing all the same and becomes just one more force manhandling your feelings and personality in directions that don't become you, that you would never choose under circumstances in which you had more control.

...So.

Edited at 2017-04-19 05:53 pm (UTC)
No surprise there…
Doctors are famous—or notorious, take your pick—for off-label use of medications, based on the effect they think the drug will have. They basically wing it; methotrexate (https://www.verywell.com/methotrexate-10-things-you-should-know-190082), an old-school chemotherapy drug—I first read of it in the tear-jerker book Eric (https://www.amazon.com/Eric-Doris-Lund/dp/0060956372) when I was about 12—is now the drug of choice for treating arthritis. Who woulda thunk?

Also: who would have thought Eric was still in print? or Ellen: A Short Life Long Remembered (https://www.amazon.com/Ellen-short-life-long-remembered/dp/087701051X), or A Little Girl's Gift (https://www.amazon.com/Little-Girls-Gift-Lawrence-Elliott/dp/0976301652)—all stories about kids with cancer?

When you consider all the books I read about people with cancer when I was a kid, it's no wonder I spent so much time wanting to die—subconsciously, I probably wanted someone to miss me enough to write a book about me.