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Moving Forward

By on November 9th, 2012 Categories: The Breast Cancer Journey

There was one night that I had a lot on my mind. I was lying in bed, staring at the ceiling, and reviewing the proceedings of the day. When you’re a grad student and it’s the end of the year, you almost always have a lot on your mind. My fingers were wandering as my mind was working, and in the process of making a “to do” list so that I could put myself at peace, I found a firm spot on my left breast. Then I really couldn’t sleep.

I think I cried that night. Or if it wasn’t that night, it was another night before I saw the doctor. I knew enough to be afraid of the possibilities, but I was more anxious to get this thing checked out than I was to ignore it.

When I was fourteen I found out I had stage III or IV spondylolisthesis, which is a spinal condition involving slippage between vertebrae. I’m not sure if it is rare, but it felt rare enough for me. I learned all of my lessons with this diagnosis, and those lessons can be summed up in this phrase: take what you are feeling seriously. It had been a handful of months since I’d not felt pain in my back and legs, since I hadn’t had numbness or tingling sensations, since I could comfortably stand long enough to take a shower. In the meantime, I was self-diagnosing and attempting to treat myself with exercises and stretches, which turned out to have been the worst thing for my condition. I finally got an x-ray. On the way into the doctor’s office I felt sheepish because it was “probably nothing,” but on the way out I was humbled. I needed immediate spinal fusion surgery or risked losing my legs to paralysis, and I had not taken anything I’d been feeling seriously.

This history drove me to make an appointment in the name of that small lump on my breast despite having no breast or ovarian cancer in my family and despite being twenty-five years old.

But it could have ended at that first appointment. If I had listened to what the medical provider told me, I would “not have cancer.” I would have a fibrocyst, and I would be able to feel it and think how lucky I was to not have cancer. I’m being slightly dishonest though, because I believed I had a cyst for about a month. That was enough time to finish the semester and all of my work without the added stress of a cancer diagnosis. I was still keeping a skeptical eye on my breast, and after that month the lump had already grown noticeably. I went for a biopsy and within a week I officially knew I had cancer.

Many things worked out in my favor. I am lucky that I felt something. I am lucky that it got big enough quickly enough for me to second-guess my first diagnosis. And I am lucky for being young. While my young age may have skewed the diagnosis at my first medical appointment, I’m realizing many benefits (and some drawbacks) to being a young woman with breast cancer.

The first benefit of being young is reduced recovery times. Before my diagnosis, my good health allowed me to do many things, including challenging myself on backpacking expeditions with friends. Treatment does not feel physically demanding in the same way that backpacking does, but small clues like vision change and chemo brain remind me that my body is working hard, and this reinforces my feeling of resilience. The second benefit is more years with ageless breasts!  There are plenty of things to dread about cancer and cancer treatments, so I made a point of finding things to look forward to. If that meant looking forward to perky breasts of my own design, then so be it. Right after my diagnosis, my grandmother told me she wished she could have the cancer instead of me. I replied, “But grandma, new boobs would be a waste on you.”

One of the hardest things about being young and having cancer is feeling compelled to make the difficult choices about prevention. I had the option to choose between a unilateral and bilateral mastectomy, and as much as I felt attached to my body, I kept thinking about worst case scenarios in the future. I made the aggressive choice to remove the right side prophylactically with the left, and thought I would be in a good place to hopefully avoid further treatments. The next difficult thing I learned about being young is that my doctors were going to be aggressive with my treatment, meaning that I was probably slated to go through chemotherapy regardless of the outcome of my surgeries.

I feared chemo more than I feared losing my breasts. Being young makes me think that I have a better chance of intercepting all of the unusual and undesirable long-term side effects of the chemotherapy drugs. It took me a few days after finding out I was going to proceed with chemo to build up the courage to research side effects. As many know, the list is disturbing. In response to my knowledge that I would be going through chemotherapy, I kept repeating, “But I didn’t have any side effects with the cancer!” It was the first time I felt like my getting cancer was more than a survivable inconvenience — it was explicitly unfair and threatening. I can see my future without natural breasts, but the risks of chemo are a complete mystery in the long-term. Never being able to breastfeed is one thing; when I think about the small chance of losing my fertility entirely, I get absolutely furious. I clench my jaw and think, “Cancer can take my breasts, but it cannot take THAT!”

There is a lot of emotional weight in imagining the future. I used to think that once this cancer stuff was sorted out, I would be back in the pool of normal, healthy, not-at-risk-for-much-of-anything adults. There was a switch in my thinking somewhere in the early phases of chemo when I stopped believing this and started to realize that I would always be an outlier in terms of health issues. But a young person with cancer is also a social outlier. We get to be the examples of strength and go-get’em-ness.  We get to teach our peers about cancer, because hopefully most twenty-somethings don’t have first-hand experience with it. We get to spread the word. “Touch yourselves and ask questions!” is what I exclaim eagerly and energetically to my friends after they ask me all the whats, whys, and hows of my cancer.

As I’m writing this, I have years of treatment ahead. The longer I go through treatment, the more I understand the strength of my body and the ability of my mind to accept and move forward. I would not have consciously related backpacking through Olympic National Park with my best friends or hiking Raudmelen with my family to my engagement with cancer, but now that these things are all framed together in this, my first narrative to the cancer community, it makes perfect sense. Backpacking and cancer treatment both require endurance, a positive state of mind, and something to keep my head warm.

Lulu Fiorina is a Master of Architecture and Master of Landscape Architecture student. She lives and receives cancer treatment in the Midwest. Once school stops taking up all her darn time, she’d really love a dog.

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