An Update

As you all know, I had my bilateral mastectomy on December 21, 2021. And I’m thrilled to report that this was also the day that I became “cancer-free”! All lymph nodes were negative, and my margins were totally clear. I have officially been told I was stage 1 (!!) - no one had given me that label before. I never had an official moment where a doctor declared me cancer-free and patted me on the back like they do in the movies, so it took time for me to adjust and understand that ~technically~ I didn’t have cancer anymore (there’s no way to really know, so I prefer the term NED, or no evidence of disease). It’s a huge weight off, but it’s weird when I still have so much treatment I have to do.

While I had fully expected a pathologically complete response (PCR) to chemo, unfortunately, there was still cancer left in my breast at surgery. But: the pathology had changed and it went from 1.7cm to 6mm - so just because there was cancer left did NOT mean the chemo didn’t work. It definitely worked, just not as much as I had hoped it would. Because I didn’t have a PCR, my treatment has changed. I had initially been put on a year of Herceptin/Perjeta infusions, which are not chemotherapies, but a type of targeted therapy. But now I have been switched to a drug called Kadcyla, which is a targeted chemotherapy. Kadcyla is essentially chemotherapy and Herceptin combined into one drug, aiming to take down any rogue HER2+ cancer cells that might still be floating in my body. It does not have the same side effects as general chemotherapy (hair loss, extreme fatigue, nausea, anemia, low white blood cells, and on and on). I will be able to live life pretty normally on Kadcyla, and Kadcyla cuts recurrence rates in HALF. So that’s pretty awesome too. My chance for recurrence is less than 5% (but not zero, much to my chagrin). I will be going in once every three weeks for Kadcyla all the way into 2023 because I haven’t started it yet - I’m waiting until I can get my tissue expanders switched for implants. You can’t have surgery while on Kadcyla, unfortunately.

In addition to another year of chemotherapy (albeit very very light chemotherapy), I have 5 years of medical menopause to look forward to. I went into menopause before chemo started because I had my ovaries medically suppressed to protect them. Chemo can kill your eggs, but if you suppress your ovaries during it, less of your eggs will die. Now that I am finished with active treatment, my doctor has added aromatase inhibitors (AIs) to the mix. Basically, the menopause I was in before was a more regular menopause. The AIs have put me into next-level menopause, a menopause that does not happen naturally to anyone. AIs shut down any estrogen production in your body. So not only are my ovaries sleeping, but all other glands in my body that make estrogen are sleeping too. The side effects can be significant, and highly personal. Basically: vaginal dryness and atrophy (bet you didn’t know that was a thing), painful sex, osteoporosis, joint pain, and low libido are all potential and probable side effects to ovarian suppression and AIs. So, awesome! Totally cool with having the body of an 85-year-old at 25. No biggie.

Aside from those, I’m reeling emotionally from everything that just happened. My body is so different. My reflection is so different. I don’t like it, I’m not used to it, I want desperately to go back. I find myself looking at photos of myself from April, May, and June 2021 and thinking about how happy, confident and beautiful I was. And then looking at my reflection now and thinking about how I literally look like the Crypt Keeper. Post-cancer is HARD.

I’m adapting. I’m healing. I look back at what just happened to me and wonder how on earth I’ll ever feel as light, happy and free as I did at the beginning of 2021. Things aren’t the same, but I’m reminding myself that they shouldn’t be. Life is about change. The way I felt in May 2021 was different from the way I felt in May 2020, or May 2019. Never, in all my life, has anything I’ve felt lasted. It’s not supposed to. It’s okay to change.

As I look forward, I want to know what YOU want to know. I’m glad I made a blog, and I know there’s not much more for me to update everyone on, but I’m wondering what questions you have! What do you want to hear from me?