I don’t like surprises. As a child, I was told that when I received a gift I didn’t like, I had to swallow my disappointment and pretend that I liked the gift. I found this immensely difficult to do, and would often say “thank you, I love it,” with a grimace and tears threatening to spill over the edges of my eyelids. Decades later, I found myself in a similar position, grimacing and tears about to run down my cheeks, when the doctor I thought I was seeing out of an abundance of caution said, “This feels like breast cancer to me.”
This wasn’t supposed to happen, it was supposed to be a fibroadenoma, like my OBGYN nurse practitioner had thought. When I heard the breast surgeon mention cancer, I thought of my NP’s words, “This feels too big to be cancer.” The breast surgeon was pointing to a poster of stages of cancer. She had seemingly ignored stage 1 and 2 and was explaining stage 3 cancer. I stopped her and said, “Am I going to die? My husband is not cut out to be a single father.” My daughter was seven months old at the time the word “cancer” was mentioned.
Less than two weeks later, I was back in her office with a confirmed diagnosis of Stage 3A triple-negative breast cancer. A few days after that appointment, I got a call from a genetic counselor that my test had come back with a BRCA1 mutation, which meant that there was an 85% chance that I was going to get breast cancer before age 70. This was almost guaranteed to happen, and I didn’t know about it until it was too late to do anything to prevent it. There was no known history of breast cancer in my family. For someone who hates surprises, these were two pretty awful ones.
I’m not sure when I learned about cancer, but I never attempted to understand it until it was growing rampant inside my body. I had this foolish idea that breast cancer was the “good” kind of cancer. It’s hard for me to associate the word “good” with 16 rounds of chemotherapy, 12 of which contained a drug I was deathly allergic to, another fun surprise, a breast amputation surgery, and 25 rounds of radiation. I lost all my hair, most of my eyebrows and eyelashes, and the ability to breastfeed any future children. At some point in the next ten years, I will also lose my ovaries, hopefully before cancer gets to them.
I secretly hoped that chemotherapy would be my secret weapon in losing the weight I’d gained from pregnancy and breastfeeding. Instead, I gained an additional 30 pounds. Between the steroids I was on and the fact that the only foods I could get down were calorie-laden but otherwise nutritionally deficient, I found myself swelling. I felt like the Violet Beauregard in Charlie and the Chocolate Factory who turned into a blueberry. Seemingly every time I looked in the mirror my face was rounder, and my clothes were tighter. I expected my reflection to resemble a skeletal cancer patient portrayed in the movies, but what I saw was more similar to a fat, old, bald man.
Perhaps the biggest expectation that was shattered was that the day I would be pronounced cancer-free would be the best day of my life. When my surgeon called me a week after my surgery to inform me that I’d had a pathologically complete response to chemotherapy, that all the cancer they removed was already dead, all I could muster was “okay.” I blamed my initial reaction on my narcotic-induced stupor, but the relief never came. I couldn’t figure out what was wrong with me. Just 4 months earlier I had been telling everyone that all I wanted for my birthday was to be cancer-free, but once I was, I realized that what I really wanted was to never have had cancer to begin with.
Cancer muggles think that cancer ends when you are pronounced cancer-free. Some may even extend the deadline to when treatment ends. When I was first diagnosed, I saw cancer as a hurdle to leap over, and once I cleared the hurdle, I’d continue on my merry way. My experience was that my diagnosis unlocked a portal to another planet entirely. There was no going back to my old life, I am a profoundly different person for having gone through cancer at such a young age. On my cancer planet, I could still see life on earth going on, I saw my friends continuing to grow their careers, having babies, and traveling. It is, of course, still possible to do all of those things on my cancer planet, they just come with more risks, more planning, and more anxiety.
Other than weight, the two other things I gained from cancer that I didn’t expect were access to the worst club with the best people and a new perspective. In an effort to feel less alone on my cancer planet, I joined a virtual support group for young adults with cancer. I connected with everyone there, but perhaps the most with my friend, Jake. He and I could not have lived more different lives. He lives a short drive from his childhood home and has never left the country. My childhood spanned three countries and two states, and I now reside in a third state, three hours from my family. Our work and educational backgrounds are also vastly different. The only thing we could connect on was cancer, but that was enough.
We speak every day on the phone during his commute home and my commute to pick up my daughter from day care. When it seemed like all of my friends were tired of hearing me whine about cancer, we shared realizations that life was easier when we were full-time patients and discussed the various failings of insurance companies. I learned about his life in rural New York, and he learned of my life as a mother and how I felt like society was doubly failing me as a working mother and cancer survivor. It’s a friendship and perspective I never would have found without cancer, and I am endlessly grateful for it.
Whether I realized it or not, when I was transported to my cancer planet, I gained a lot of perspective. I have always been a person who makes mountains out of molehills, like the waves of panic I felt when I couldn’t find shoes that fit my daughter’s abnormally tall feet but am calm and measured in an emergency. I still make some unnecessary mountains out of molehills, but I have let a lot go. I didn’t quite realize this until I met a mom who was a year behind me in motherhood. She would say things about me like “You’re so chill,” when I would talk my daughter down from a tantrum. I laughed when I heard this, no one has ever used the word “chill” to describe me, unless it was in the context of having “no chill.”
I often say that being in labor recalibrated my pain scale, because only then did I experience what a level 10 pain felt like. Having cancer recalibrated my perspective scale in the same way. My experience with cancer made me realize how many of my problems were self-created. I don’t quite let everything go, but I move from panic to finding a solution much more easily than I used to.
I wonder all the time what choices I would have made if I knew about the BRCA1 mutation before it caused my cancer. In the end, I’m glad I didn’t know until it was too late. Going through cancer at a young age and with a young baby was the most challenging hurdle I’ve had thrown at me, but the gains outweigh the losses. Hair grows, breasts can be reconstructed, formula exists so any future children I have won’t starve, and excess weight can be shed, but connecting with Jake and how gaining perspective has allowed me to live a happier life have been two of the best surprises of my life.
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