My WHAT Could Die? aka reasons cancer is chronic illness

Jump on the bitch bus peeps, the ride’s a doozy. In today’s episode of why breast cancer is an unceasing ride of indignities, I give you a few details from an essay I’m working on about the definition of grit.

When I finished* cancer treatment six years ago this summer. Wait. Not far enough back. Let me start again. *hahahaha finished…I was naive. I did complete chemo/radiation, though.

When I had my lumpectomy (which included two tumors and a couple of lymph nodes, leaving scar tissues I can still see and reduced range of motion in that arm) in November of 2019, the surgeon and oncology insisted all bits and pieces of my breast cancer were gone. Cut out, exorcised/excised (yes I used both on purpose) and banished from Frankenboob for good.

But. Just in case, just to be REALLY safe, let’s do 16 weeks of chemo and 4 weeks of radiation, because cancer cells can be microscopic little gremlins hiding from the scalpel, and my risk of recurrence was above 10% at the time (somewhere around 30%, which isn’t great). Ok, cool. Execute project five months of hell. Persevere.

I did not ring the bell when I finished chemo during a pandemic. Yes, still salty about that. I did my radiation and slathered the burn cream on the melted armpit, and then I was done YAY.

Wait, because my cancer was hormone positive, meaning my own estrogen and progesterone fed the tumors, I needed to be on a hormone suppressor until I hit menopause. It would have some side effects, mostly hot flashes and the like. Ok, fine. Endocrine therapy still counts as survivorship, and “active” treatment is over, and it kept my RoR under 10%. Except a “rare” side effect of that drug was uterine cancer.

Yes. A side effect of the keep-me-from-having-breast-cancer-again-medicine was…cancer. Except it wasn’t supposed to happen because, you know, rare.

And then, five years or so in, I had pre-cancerous cells in my uterus. SIGH. Round two, cancer lite, new additional oncologist, hysterectomy, post-surgical hell for a few days, and all new recovery fun (no radiation, thank all the goddesses for that because honestly radiation burns in the hoo-ha, well, you guys would probably never talk to me again after writing about THAT level of hell). I also did not enjoy the particular indignities of dealing with certain folks at a clinic I won’t name that supposedly specializes in menopause issues and absolutely sucked so badly I refused to go AND wrote a strongly worded email regarding the intake behaviors. I mean, seriously, of all the people in the world not to fuck with, perimenopausal and menopausal women, PARTICULARLY terrified cancerous ones, are not the ones to be uncompassionate and brutally inconsiderate with. Gross.

Anyway.

The endocrine therapy pre-menopause that was supposed to help keep breast cancer recurrence at bay doesn’t work as well when all the bits and pieces creating the majority of hormones have been yanked out via robot spikes through various holes in my belly, so different endocrine meds are prescribed. THESE ones, also for suppression of any estrogen/progesterone. Remember kids, this is all to keep the original breast cancer from coming back even though my oncologist tells me every time I see her some version of “you know it’s never coming back, right”, usually not long after telling me I need to go on Ozempic because my weight is my #1 risk of recurrence.

If I allowed my eyes to roll at the absurdity I’d look like a cartoon character with a concussion, and yes I ALSO need a visio workflow or a freaking map drawn out to keep it all straight.

So, THIS medication, which I’ve been on for about a year now, causes bone density loss, aka osteoporosis. Woo. I had a bone scan before I went on it for a baseline of my skeleton’s mass: in this case it’s supposed to be heavy, and yay for that.

So, that brings us to today. This week, I get to start a new infusion of a drug to counteract the bone density loss that the don’t-get-cancer-again drug causes. The infusion is essentially chemo-lite: primary side effects are “flu-like” symptoms. FUCKING JOY. Oh, and I had to go to the dentist, who referred me to a fancy endosomethingorother dentist for fancy scans of my jaws to sign off before I get the infusion. Why?

Because there’s an up to 6% chance the infusions can cause JAW BONE DEATH. If you want the osteo, it’s osteoNECROSIS.

JAW. BONE. DEATH.

FUCKING EXCUSE ME? MY WHAT CAN DIE?

What the fuck does that even mean: will it just disintegrate like the radium girls’ jaws? Will it fall out? If my jaw dies and has to be removed, is there a steel one that gets put in so I actually have a steel trap for a mouth (neat!)? Will my teeth fall out, which has never been a horror nightmare of mine before but I suppose now I can see it becoming one? Will my face skin just be left there like a weird flappy version of those large-gauge ear-holes without the earring?

What the actual hell is happing in this timeline of my life?

And why in all holy hell did 1) my oncologist just drop that casually in conversation like it’s no big deal and 2) NO ONE tell me what that might mean until I specifically asked the endo today? I don’t have firm answers, so guess what: neither do you! Best I get is that I have excellent teeth and I can feel freezing cold on each tooth so the nerves aren’t dead, so the endo-dentist knocked on wood and said the likelihood is that 6% or less that I’ll have any complications. If I do, they’ll deal with it because they know how to treat it.

Oh, did I mention dental insurance doesn’t cover that sort of work? Manifesting zero percent complications for this bullshit for all the reasons this time around. All the reasons.

So, yeah. Those of you who assume treatment is over when chemo and radiation are done and cancer is over/we get on with our “normal” lives/all is well afterward? Sorry to burst that bubble yet again, but cancer is a chronic thing even when we aren’t actively in treatment, because we never know what utterly insane thing will be dropped in our lap at the next completely “normal” onco check-in appointment.

WHEEEEEE.

APROPOS OF THIS POST: PAGAN CANCER AND CHRONIC ILLNESS SUPPORT GROUP IS THIS SUNDAY, THE IDES OF MARCH, FROM 4PM – 5:30PM AT MAGUS BOOKS IN MINNEAPOLIS. Unless chemo-lite is more like chemo-regular, in which case I’ll let Liz know asap if I need to cancel.