Two Chemos In
So I started writing this weeks ago, but it was a rough go if it the first round of chemo, and I didn't have the time or energy to catch up. I missed May. Sorry. Here's an update.
(Chemo #1: gown on; port accessed; photo filter applied.)
Chemo #1 itself was uneventful, but I was still going through the OHSS from the egg stuff, which kindof blew up on me. I won't go into the goriest of details but I was at one point carrying around about 15-20 lbs of fluid in my abdomen, which squeezed my gallbladder and caused an attack, and now once all the cancer stuff is done this fall, I need to have my gallbladder out, too. Woot. So Chemo #1 was totally overshadowed by the OHSS stuff. There were multiple ER & hospital & office visits, first on the Vineyard before they looked at me wide-eyed and sent me up to Boston.
(I took this while on morphine in some kind of cat scan or xray room)
We had to stay there posted up on a LaQuinta for a week with the dog feeding me excessively salty foods to try and get the belly-fluid to come back into my system from the "third space" and get flushed out. If I never eat another saltine or drink another V8, I won't feel like I'm missing out on anything. And I'm a girl that loves a Bloody Mary.
(My actual diet for a week, plus salty crackers.)
Note here: before I went into chemo and before the last stages of the egg stuff, I told them something felt really wrong. I'm hugely thankful to the fertility peeps at MGH, but I did tell them several times that I something was off, that I felt really bloated and that everything felt extremely swollen. They knew that I had PCOS, but somehow they missed the other signs of impending OHSS that could have prevented me from several weeks of misery after the procedure and after chemo. And it was truly miserable.
I also called my oncology team and told them I was suffering pretty acutely from OHSS and wasn't sure whether I should still go ahead with the chemo, and they advised me to go ahead. I really don't know whether that was the best call. I'm not a doctor. I can tell you, though, that I was terrified that the chemo drugs were leaking into wherever all the fluid was going and that I was poisoning my system, and adding chemo after-effects to the utter misery of OHSS felt like cruel torture. Medically, was it necessary? Again, I don't know. I know they'd delayed chemo for the egg stuff and wanted to get started on it ASAP, but I have to wonder if waiting one more week would have been better for me as a whole. Because May, for me, was all in all a month of utter misery. I guess in retrospect, I feel as though I should have pushed harder–advocated better for myself–not let them tell me everything was fine and would be fine. Because I knew it wouldn't be and it wasn't. Thankfully there's nothing permanent from it.
So to be honest, the OHSS was such a miserable clusterf*ck that I don't even know if chemo #1 had super bad effects. I had the nifty neulasta robot that attached to my arm and gave me a mini-infusion of white blood cell booster 27 hours after chemo ended, and that was neat. I mean the actual drug caused a few days of really weird intense bone pain, which in itself is a freaky sensation, but wearing a robot was cool.
(^^my robot)
Chemo #2 was smoother, although the stupid port flipped. Yeah, you heard that right. Flipped completely over, so that in order to get chemo, I had to flip it back myself through my skin, which, as you can imagine wasn't the best sensation in the world. I got through with chemo #2 and got home, and within a week it flipped again, so now I have to go in on June 12th and they're going to "do a study,"( i.e. x-ray it to confirm that it's a janky port) and then replace it on the 13th before accessing it on the 14th for scheduled chemo. Woot!
(Rockin' the #teambewb shirt at Chemo#2)
I guess the collective lesson here is that if you're in a medical tornado like cancer treatment (or even if you're not) and you really feel like something is wrong but they tell you it's fine, follow up. Then follow up again. Your instincts are good and they're telling you something is wrong. Listen to them. Push for your medical team to take you seriously. Call and keep calling until someone listens to you. Every time I second-guess myself about something like this, I'm right, and I have to suffer for a few weeks because I didn't stand up for myself enough when I first felt like something was wrong.
You know yourself best.
And you've got this.