If you follow me on social media, then you may already know that I was diagnosed with breast cancer…again. I want to try to give as succint an overview as I can of what’s been happening with me.
To recap: I was first diagnosed with cancer in my right breast in 2008. It was a stage 2, Luminal A type of breast cancer. The tumor was 1cm big and had spread to 5 lymph nodes. Treatment lasted about six months and I took tamoxifen for seven years. Crucially, I didn’t get a mastectomy. Through genetic testing, I found out I had the BRCA1 gene mutation. I likely inherited it through my father (because my mother did the test as well and didn’t have it). And since a lot of his family is still in Cuba, I didn’t know breast and ovarian cancer ran in the family. Anyway, back in 2008, the cancer diagnosis took me completely by surprise since I was under the impression it was impossible to get breast cancer in your twenties. I couldn’t go through with a mastectomy then, and I paid the price for it with a “new” breast cancer.
So let me take you back to December 2021, when I was doing a bunch of routine medical visits. I got my yearly mammogram and ultrasound. In the first few weeks of January, I got slammed with a bunch of bad news from the various medical tests I had done: I had anemia (because tamoxifen had given me adenomyosis which made my periods a horror show), my markers for ovarian cancer (CA125) were very high and I had breast cancer on my left breast.
The two months that followed were very stressful as I scrambled to get a new cancer team. Since I moved back to Miami from New York, I had gotten a Miami oncologist, but now that I had cancer again, I had no faith in their ability to treat me because they never provided referrals on time. My OB/GYN helped me get a referral with a oncological surgeon, who then referred me to an oncologist.
There was also the issue that the mammograms and ultrasounds hadn’t spotted the actual breast tumor. The mammogram didn’t show anything because I had dense breast tissue. The ultrasound just showed enlarged lymph nodes, and the biopsy to diagnose cancer was done on the lymph node. So I had to take the exams again, and it turns out that the ultrasound tech didn’t do her job properly because the tumor was easily found on the second ultrasound. So let that be a lesson to you kids: it really matters where you get your imaging done.
Anyway, by March, we knew that the tumor was 3cm, a ton of lymph nodes on my left chest were affected, and it was triple negative…so a worse cancer than my first one. The fact that it was triple negative is very scary, it means the cancer doesn’t have estrogen or progesterone receptors, which means it ca’t be targeted by drugs like tamoxifen, which provide an added layer of “protection” against the cancer. I’ve known a couple of people who died from triple negative breast cancer. And to this day, I wonder how the cancer spread so much in one year. In the back of my mind, I wonder if the imaging done the previous year had also been “botched” like my ultrasound.
With my “worse cancer”, I had to get much more aggressive treatment. Whereas, with my first cancer, I had 8 rounds of chemo once every two weeks, this time around I had 24 rounds of chemo, once every week, over 7 months. I was hospitalized five times. With my immune system taking a beating from the chemo, I got a couple of infections. I even got blood sepsis, and the theory here is that the bacteria (which is a common bacteria that lives on skin) entered my blood stream when they inserted the needle for chemo.
I want to note some differences between this experience with chemo and my first one: this time around, they didn’t give me steroids because they were giving me Keytruda, an immunotherapy drug. Keytruda was invented in 2016, so I was getting the “latest” in breast cancer treatment. They just gave me anti histamines like Benadryl to “offset” the side effects from chemo. And let me tell you: getting Benadryl injected directly in your blood is a very different experience than taking a pill. It is a serious sedative, and in some instances, gave me these weird convulsions. Actually, speaking of anti-histamines, I got a really bad skin allergy following chemo, and so the oncologist thought that I’d become allergic to Taxol since I had taken Taxol (technically, Taxotere) with my first cancer. The doctor had to switch me to another drug. Another difference with this second chemo experience was that I wasn’t prescribed injections (like Neupogen) to boost my blood cell count. Supposedly, my chemo drugs wouldn’t affect the bone marrow, but my bone marrow didn’t agree with that assessment. I ended up getting a couple of blood transfusions because my blood count was so low.
Also I got to partake in Adriamycin. I didn’t take Adriamycin with my first cancer because my oncologist didn’t want to risk harming my heart. It was a bit of a gamble back then, since Adriamicyn is part of standard care, but it worked out. Adriamycin was an absolute necessity this time around, and it’s very toxic. It turned my pee red, made me vomit three times a day, AND, it left a gross taste in my mouth so even water tasted awful. I spend about a month subsisting mostly on frozen popsicles.
Once I finished chemo in September 2022, it was time to chop off my breasts and a bunch of lymph nodes. Now that I’ve gotten a mastectomy, I DON’T regret not getting it in my twenties. Heck, I’m even more puzzled why women with perfectly normal breast get breast implants: those things are really hard and it just doesn’t look natural. I’ve been wearing baggy t-shirts ever since, to hide my fake breasts. I avoid looking at my chest as much as possible: it’s weird not having nipples. But I shouldn’t complain: there was a fear that maybe my body would reject the implants and I’d have to be flat (and that would be a bigger reminder that my body isn’t what it used to be).
The surgeon sent my breast tissue for testing, and they didn’t find any cancer. Based on these results, the assumption is that chemo successfully destroyed the cancer. My oncologist seems optimistic about my prognosis, even though she told me there’s an 85% chance of recurrence by the third year of remission (I’m on my second year). I don’t share in her optimism with odds like that…
I still had to do radiation to make sure that any hiding cancer cell was killed. It was Proton therapy which is different from the typical radiation therapy I had before. Proton therapy doesn’t penetrate the body as deeply, which means my heart and left lung wouldn’t be affected by radiation. But proton therapy gives some serious “sun burns” and damages to the tissues it does penetrate. The muscles around my chest are so scarred that I now have reduced flexibility and strength on my left arm.
I also got a bit of neutropenia on my left hand, but they say that’s partly caused by the chemo. As someone who plays the piano, the numbness in my left hand is extremely annoying, but there’s a possibility it could get better after years.
I finished with radiation in January 2023, one year after I was diagnosed. I still had about five months of immunotherapy to go, which was a much easier process than everything that went before it. I also had to follow up with my OB/GYN about my high levels of CA125. As the recipient of a BRCA1 gene, I needed to have my ovaries removed because I was at high risk of developing ovarian cancer. Ovarian cancer has a worse survival rate than breast cancer, so I didn’t feel like rolling the dice on that. I didn’t need to have my uterus removed, but with my adenomyosis, it’s not like my uterus was in good shape anyway. And without ovaries, what was even the point of having a uterus? I got all my female apparatus removed in May 2023… I’m a eunuch now… I’m bummed about it. I did the surgeries willingly, but it was a choice forced on me by my genes. In a perfect world, with a better body, I would still have all my body parts.
So that’s the “quick recap” of what I’ve been going through during these last few years. It’s kind of a ramble, but I tried my best to edit myself. I’m still tired all the time, and my body is being annoying: my thyroid and immune system are acting up. I had started work on the eight book in my prehistoric series late in 2021, but that has just ground to a halt as I think about the possibility of dying in my 40s…could be worse, I could have died earlier, but still, I feel a sort of paralysis when it comes to using whatever time I have left effectively.