It’s been awhile.
I don’t remember where I left off, and now that I have finally started writing, I am loath to stop and go look. So I’ll just give a quick and dirty overview of where I am, health-wise.
So I had cancer, I had chemo, I had radiation. Chemo plunked me directly into menopause, as it is wont to do. I struggled hard with menopausal symptoms for two full years. A short list of such symptoms would be hot flashes (~20 a day, on bad days), night sweats (did not get a full night’s sleep for 2 years), skin thinning (I would bump into something and start to bleed), wrinkles appearing literally overnight, hair thinning, weight gain, breakouts, irritability, mood swings, and depression (even while on medication). I basically made it through the first year clinging to the “knowledge” that chemo after-effects wear off after a year. And I made it through the second year thinking that surely, I must reach that light at the end of the chemo tunnel soon. And as the third year approached and I seriously contemplated suicide, I went to my oncologist and my gyno and said, “I cannot live like this anymore.” The agreed and in spite of the fact that I have hormone-receptor positive cancer, put me on hormone replacement therapy (HRT) – estrogen (a patch applied twice weekly) and progesterone (a pill taken nightly). This went fine, hot flashes disappeared, I finally started sleeping again, and my period came back. Unfortunately you’re not supposed to have a period when on constant progesterone, so I had to go in for an ultrasound and an endometrial biopsy. (Gosh I hope I didn’t blog all this before, but if so, sorry.) The endometrial biopsy sucked ass but turned up nothing bad. The ultrasound actually showed follicles (eggs) in my ovaries, which of course sent me over the MOON – a previous blood test had shown I had no eggs left.
Per the two doctors, I went OFF hormone therapy, because it appeared my body was bouncing back. Oh, not so! All my symptoms came back with a vengeance. I went back on HRT at a lower dose of estrogen (0.05mg to 0.025mg) but the symptoms continued. So I am now back on 0.05. Well, actually not today. But I’m getting there, hang on.
I guess the first thing to note is that my gyno was well aware of the fact that I wanted another child. I discussed it with her in depth on multiple occasions. However, when I called her at one point and asked what to do if I became pregnant while on HRT, she told me, rather coldly, that I should not become pregnant while on progesterone, and that J and I should be using condoms. I told her that seemed counterproductive to me conceiving, and her reaction amounted to a shrug. I then proceeded to switch gynos. (It wasn’t just this – I also could never get ahold of her, and her office once refused to refill my estrogen prescription, stating that their notes showed my oncologist had said I shouldn’t be on it, which was completely – not just incorrect, but an outright lie.) Yesterday I got a letter in the mail stating that she is retiring, and I am not surprised, because I didn’t get the vibe she really cared about me as a person. I don’t think she was loving her job.
When I went to see the fertility doctor in October, she was surprised that gyno had me on a steady dose of progesterone while knowing I wanted to conceive, since PROGESTERONE IS BIRTH CONTROL AND KEEPS YOUR UTERINE LINING THIN. So even if I HAD conceived, I would not have been able to carry the baby because there was nowhere for an egg to attach. 😡 She switched me to – gosh you know I can’t even remember. I think it was supposed to be two weeks on of a double dose of progesterone, then two weeks off. But the double dose of progesterone made my hot flashes come back like whoa, so she cooled it to two weeks on of a single dose of progesterone, then two weeks off. That’s been fine.
Last month, two days before Christmas, I got a period for the first time in four months. Super normal, just like the old days.
This month, on the 21st, I got my period – not even for a full day, for a few hours. A one-tampon period. Then nothing. Honestly, guys, my body has been so jacked up for so long that I didn’t even think anything of it. Just typing that somehow made me want to cry. I guess – here’s the thing, I never thought I’d still be dealing with this shit three years after completing chemo. I thought I’d be, you know, worrying about whether or not I’d have cancer again. Maybe even having cancer again. But not dealing with shitty shitty bullshit fallout related to my treatment. What a load. Anyhow. Four days passed and then it’s like the floodgates opened. I woke and was bleeding again so I put in a super (if any dudes are reading this, that’s the strength) tampon. Four hours later I went to pee and had bled completely through the tampon, through my underwear, and into my pants. I replaced. Four hours later, same deal. THIS WENT ON FOR FIVE DAYS. I was exhausted, demotivated, and had some of the worst cramps of my life for those five days. It’s now day 7 and I am still having slight old blood (brown) discharge.
I conferred with my gyno (new gyno, much better) and have again gone off HRT (as of yesterday). I will remain off for a week and go in Monday to have my blood tested and see where my hormone levels are. Best case (please cross your fingers) scenario – my hormones are returning/have returned to normal and I can stop HRT and go back to having a normal monthly period. I don’t even – I mean I’d still love another kid, but I’m almost 41 now, and after everything I’ve gone through, I’m not even focused on that at this point. All I want is for my body to function in somewhat the same way it did before I had cancer. That’s all.
And here’s the thing. This all sucks so much BUT THIS HAPPENS TO WOMEN ALL OVER THE WORLD ALL THE TIME. Why aren’t we talking about how breast cancer, even when cured, fucks you up for life? Why aren’t we talking about how no one has any answers?!? Like, that is the most stunning and enraging part to me! NO ONE can tell me when/if my body will return to normal. NO ONE can tell me WHY my body is doing the stuff it’s doing. I mean honestly, not even TWO DIFFERENT GYNECOLOGISTS WHO ARE FUCKING TRAINED IN WOMEN’S BODIES UNDERSTAND WHY I KEEP BLEEDING! This is an actual quote from the gynecologist I actually like:
“Interesting that your period comes before you stop your progesterone.”
YEAH IT IS! Everything my body does seems to be “interesting” and “curious.” Could you please tell me why?! I know other women must have gone through this! I don’t believe I am a reproductive freak of nature! I have had ultrasounds and scans and biopsies that indicate everything down there looks perfect and in good working order, so why can’t anyone predict what is going to happen or when or how or WHY?
Sorry I went off the rails there but it is so incredibly frustrating to feel like you know as much as your doctors do about what your body is doing and is going to do, especially when “as much” is essentially nothing.
Also, in conclusion, I am dreading the blood work because I always get my hopes up thinking it is going to be THIS TIME that my blood work comes back normal-ish and it never does. In three years it never has but I know I will still get my hopes up and have them dashed when I find out my damned body is still menopausal at 40 and there is still no one anywhere who can tell me when or if that will change.
That brings everything up to date. I’ll post when I get the blood work back or if anything else happens. And if the post just says “My body still sucks,” you’ll know what that means.
complikated 