About a week ago I tweeted that I was undergoing chemotherapy and shared a horrific photo of myself as proof. I was trying to make light of a very dark situation, and in hindsight that probably wasn’t the best idea. Not only did many of you have no idea what I was talking about, but a few of you also thought I was… kidding.
I would not kid about something like this. I’ve been pretty shut down about my cancer experience for the last year because that’s the only way I know how to cope sometimes, but I’ve gotten some really great information from other people who’ve gone through or are going through something similar. So I figured to write and share is not only informational, but potentially helpful to someone else, and at the very least therapeutic for me. So here goes:
I was diagnosed with breast cancer in the summer of 2021. A few months earlier I had felt a lump in one of my breasts, way over to an outer side, about the size of a marble. I did not have huge breasts to begin with, so once I felt it, it was easy to find again, and I couldn’t stop checking for it. After about a month I decided it wasn’t going away. It wasn’t getting bigger but it wasn’t my imagination either, and I needed someone with actual medical expertise to tell me I had nothing to worry about.
I got a mammogram soon after. I had never had a mammogram before. I have Kaiser Permanente insurance, and the last time I had a Pap smear I asked the gynecologist if, at age 43 which I was at the time, I should be getting mammograms. He said no, we don’t actually encourage routine mammograms until age 50 unless there’s a concern because we want to minimize unnecessary radiation. That sounded fine to me. I’ve since spoken to quite a few women who’ve been getting mammograms since age 40 and were shocked I was told otherwise. This isn’t me saying anyone did anything wrong here, just anecdotal information.
Anyway, in the summer of 2021 my first ever mammogram showed nothing unusual. Which was great news! I was assured my boobs looked clear, so I felt relief for maybe another month or so, except that the marble was still there. And it still felt pretty foreign, and I felt increasingly weird about it — I just wanted a doctor to tell me it was normal, or benign, or a cyst or whatever. So I pressed.
The next test was an ultrasound of the lump, which absolutely showed up clear as day, nobody denied it was there. Many of you have been through ultrasounds, but for those that haven’t, typically your sonographer will do all the heavy lifting of imaging, measurements, etc. Then all that data is shared with a radiologist who then decides how to proceed. That day, the radiologist came into the ultrasound room and said to me in the most cheerful way possible, hey this is really just precautionary but let’s biopsy this lump and rule out anything dramatic. That sounded fine to me. I wasn’t prepared for the misery that is a breast biopsy, but it isn’t fun.
A week later, pathology came back and I got the call that I had breast cancer. I don’t remember that phone conversation in detail, but I do remember thanking the person profusely over and over for the news like a psycho. I’m sure they’ve heard it all. And I’m not a wizard or otherwise very woo-woo about these things, but I knew they were going to tell me I had cancer. Call it intuition, I don’t know what it actually is. But I wasn’t surprised. After that initial biopsy I had four more biopsies in various parts of my breasts because at that point they were looking everywhere, all came back benign. It was just that one f*ckin marble.
In October 2021 I underwent a bilateral (double) mastectomy to remove all of my organic breast tissue. This was not mandatory, I chose to do it. My other (recommended, for the record) option was to have a lumpectomy to remove the lump and then go through chemotherapy and radiation to eradicate whatever else might be floating around. But I was pretty fried emotionally, I wanted to avoid the dreaded chemo, and I didn’t care much about my boobs anyway so I thought, let’s just take everything out and I’ll be done with this nightmare. I was lucky enough to be a candidate for reconstruction at the time of surgery, so that’s what we did. I woke up with a new body, but one that wasn’t all that different from the one I used to have. Ten or so weeks later, I was jogging again.
Fast forward to summer of 2022, when I felt another lump under my armpit. Same side as the marble but even farther over, nowhere near my “breast”. At this point as a patient in the Kaiser oncology system, they were not screwing around with me and they biopsied it immediately. Results were breast cancer again, but this time in my lymph nodes. It was either always there or showed up after my initial surgery, sort of impossible to know. I subsequently had a series of tests to rule out cancer spreading to my bones, or my brain, lungs, etc etc. Nothing horrible showed up outside of this one lump.
October of 2022 I had 26 lymph nodes removed from my marble side. Of those, only two were cancerous. This was good news said my oncologists, two is a lot better than 20. But what it did mean is that my grand plan to avoid chemo + radiation was over. There are only so many surgeries you can get in a situation like mine before you just have to face the music. And refusing chemo was still within my rights, but not a real option. I gave in.
So you’re mostly caught up! My first infusion was eight days ago, the first of four over a three-week schedule, so barring any weird bloodwork I could be done/done in mid-February. Radiation is TBD but one thing at a time. I was a little sickly for the first few days after chemo, but nothing dramatic. I kind of thought maybe I am an actual wizard and this won’t be so bad? Sadly around day five I crashed hard, and I’ve been pretty sick ever since. I’m not sure how to describe it really — I just wake up feeling sick and feel sick until I go to bed every night. There are so many drug combos that patients need to do between infusions, I tell people it’s like being in chemistry class, but for your own body. I’m more or less functional, if functional means sleeping for 16 hours and only eating Triscuits. Of course everyone is different — and for anyone wondering about breast cancer deets I’m ER+ and PR+ and HER2- (though that took some time to figure out). I’m also doing cold cap therapy which is designed to save hair that would otherwise fall out during chemo. I don’t totally know how that’s going to go, but I’m optimistic so far, bc y not?
Thanks for listening. If I can be of help to anyone out there, hit me up.
Love,
Sarah
