Welcome to cancer class
I suppose it's time for the follow-up to my message earlier in the week. I'm a little low right now from a headache so this may be less entertaining and more of a huge data dump. Or maybe I'll surprise myself and present you with some purple prose, precious anecdotes, or perhaps just a few puns.
On Monday we started the morning with a call with my oncologist, Dr. Reddy. We went over most of the details in the oncology report, addressing questions like "are the sentinel lymph nodes arranged in sequence?" (no) and "what are the implications of the various descriptors of cancer grade and type?" (informative but not central to the treatment decision, because tumor size and finding the cells in the lymph node is a much clearer indicator of the status and risk level) and "what the heck is a 'precancerous' cell?" (poor terminology holdover used when talking with lay people, preferable just to talk about in situ vs invasive cancers).
Notably, she said, pretty much no matter what, chemotherapy is recommended for premenopausal women with positive nodes, because none of these factors seem to play much into the established overall risk of cancer cells already being present elsewhere in the body. Recurrence risk is hard to measure exactly but could be upwards of 25% likelihood for my case if I went untreated at this point. Chemotherapy should reduce that risk by ~1/3, followed by radiation to address any cells that may have been missed in the breast or in the lymph nodes, finally followed by five years of estrogen-blocking hormone therapy which should further reduce the risk of latent cell recurrence by ~1/2. I'm not sure how the actual math adds up here but it sounds like the full combination of treatments brings the overall risk profile down to a fairly low chance, let's say 5% for simplicity, concentrated in the next five, maybe up to ten years.
As for what the chemotherapy actually entails...
She offered me two regimen options, based on a large study about five years ago comparing outcomes between them for cases like mine. A two-drug regimen and a three-drug regimen, which differ in length (three or five months), the severity of side effects, and ultimately are pretty similar in overall outcome: the three drug regimen (ACT) may reduce risk by perhaps 2% compared to the two drug regimen (CT)*, while increasing slight risk of several rare but very serious side effects (very small chance of cardiac function loss or acute leukemia). Incidentally, ACT involves 100% chance of hair loss, whereas CT may be only partial hair loss with the chance to mitigate it.
Between quality of life and balancing different kinds of risk, I opted for the two drug regimen. Treatment will start on June 5, with infusions every 3 weeks for a total of four treatments, ending in August. In preparation, I have cancer class scheduled for next week, where I presume I will learn how to have cancer.
(It's actually chemo class, but perhaps it amounts to the same thing.)
I have the option to get a cold cap, which may help with hair preservation -- this is not covered by insurance, and involved about 4 extra hours of sitting still with my scalp freezing on every infusion day to the tune of $800, so it's neither a fun nor practical process. But vanity will insist, I suspect. I am looking forward to the prospect of bonus leg hair loss. Less so the eyelashes.
Anyway, once chemo was securely on the table, that kicked off SB600: the CA law mandating that insurance will cover fertility treatments for any medical intervention that may adversely affect one's bits. So I called up the Egg Man. (The name isn't fair to him really, but unfortunately it stuck, so there we are). Kaiser once again seems to largely have its act together, so I was able to get all the (extensive/annoying) paperwork done by Monday evening, blood work done on Tuesday, and a super quick ultrasound up the nethers yesterday morning to check that I have ovaries and such. Then things started to get complicated. The medications were supposed to be ordered to the Fremont pharmacy by the center for reproductive health, but there's apparently another pharmacy literally next door in the hospital where they somehow have no idea how these things work, so they told Luke the prescriptions had been sent to Pinole. Then they called to have them sent to Richmond? But we were supposed to start things that morning? And also neither Pinole nor Richmond actually have any of the relevant meds in stock??
Thankfully, our super helpful RN April helped us get things sorted - no really, they were actually ordered in Fremont and yes, they could fill the prescriptions today to enable us to keep our tight schedule. 45 minutes and breakfast pastries later, we had our $30,000 in meds.
So. IVF! I don't actually know a lot about it! I've been generally coasting along in willful ignorance so that I can make important decisions without getting anxious about the details. But unfortunately now I have started to know what it's about.
It's kind of involved!
Egg retrieval and freezing is the basic program covered in the law. I don't know what it could cost us if we decide to actually do something with the eggs, but I suspect it will be $spendy$. Fine. If Kaiser is covering the bulk of egg retrieval costs, it seems worthwhile. We're paying 1) some $20 copays for office visits; 2) copays for the above meds, which came to $180, which is much better than $30,000; 3) annual ~$360 egg storage fees to the kinda creepy ReproTech company, and 4) various optional extra bells and whistles like special egg handling, egg insurance, or super exclusive fertility trusts in case we want to keep my eggs in perpetuity after death so someone can repopulate the planet with little Rosemary clones someday. Eggs eggs eggs.
Then there's the next couple of weeks.
I'm squeamish, so Luke gets the honor of giving me twice-to-thrice-daily stomach injections over the next ten days. The morning injection is fairly benign, but the evening stab hurts like balls. These are hormone-type things to enhance follicle production. This coming Sunday I start an every-other-day routine of blood work, ultrasound, blood work, ultrasound -- basically they need to keep a close eye on how the ol' follicles are popping off. The drugs are meant to get a bunch of follicles to mature simultaneously rather than having just one take the lead, and also to suppress premature ovulation. Once things start to look a bit ripe, we'll learn about something called "triggering," which I gather is what we do to launch the actual retrieval countdown, some 36--
"No. 35. 35 hours exactly," says April. "If we wait 36 hours, we might have missed the window."
So it's apparently timed very precisely. Sometime around May 22nd-ish, they'll knock me out and go up in through the uterine wall and suction out all the liquid in each follicle, and then figure out if they got any eggs. Fingers crossed. Hoping for at least ten, but the whole thing could end up a bust.
In addition to the usual stuff, I'm on estrogen blockers as well, because ER+. This upcoming week is forecast to be Hormonal. Whee.
And they had me take yet another antibiotic, this time a single dose of azithromycin, because ...~infection~. So it's back to probiotics. I think the yogurt-kefir-pill combo worked pretty well last time, except I think I would like to identify some oral probiotic option because the previous antibiotic really set off my mouth flora in a distinctly sepulchral fashion. Now, Luke would pick another, less ghoulish but also rather less tasteful descriptor for it. I just wish to acknowledge that I killed the wrong bacteria in my mouth and I apologize, I miss them, they were good friends and the assholes who moved into the vacancy can just GTFO.
Well anyway, there's probably more to tell, but I think that is really quite enough for tonight. Busy busy. Thanks for sticking it out with me.
Love &c,
Rosemary
*For the curious, here's a meta-analysis of different treatment regimens, probably not including the study the good doctor actually told me about but not a bad starting point: https://jamanetwork.com/journals/jamaoncology/article-abstract/2443153