Joint and muscle pain. Hair loss. Vision anomalies. Dry skin.
These are some of the unwanted symptoms that I and many others experience as side effects of treatment for metastatic breast cancer, or MBC as I prefer to call it.
Side effects are the unintended consequences of drug treatments. Usually they’re unwanted, but sometimes they’re positive—for example, Botox, the injectable filler used to smooth wrinkles by relaxing facial muscles. When people who suffered from migraine headaches reported pain relief after getting a Botox injection for cosmetic purposes, doctors began to study and prescribe it as a migraine treatment option.
But back to my side effects—I’m describing them below for a little benchmarking comparison and support for others going through this experience.
Joint and muscle pain
Feeling achy is my top complaint because it can keep me from physical activities I enjoy. On top of that, I’m also dealing with an old ankle and Achilles tendon injury at the same time. These creaky joints have given me new understanding for the Tin Man’s plight in The Wizard of Oz when his oil can is out of reach. Aches and pains keep me from moving, which people with arthritis or injuries must also understand. Yet the paradox is that movement is the relief. Once I get up, stretch, and move around I feel better. Downward Dog is my new best friend and my favorite pose for a good, overall stretch.
If only there was a yoga pose to prevent hair loss. but maybe Downward Dog helps that too by increasing blood circulation to the scalp.
Hair loss may be the most feared and dreaded side effect of breast cancer treatment. I hear this from people facing chemotherapy. I hear this in the oncology community. It’s a topic I’ll be coming back to, I’m sure, because it’s universal. We humans feel very primal and protective about our hair!
When I was first diagnosed with breast cancer, I was given two options for chemotherapy:
- More frequent sessions with a chemo cocktail that would cause hair thinning but probably not total loss.
- Expedited option with fewer sessions but assured hair loss.
I chose door #2. Losing some of my hair as opposed to all of it didn’t seem like much of a benefit, and I preferred fewer IVs and trips to the hospital. I had my shoulder-length hair cut short, to ease the transition. I got a shoulder-length wig, styled and colored like my own hair before it started falling out.
Chemo started I believe in early June. By November, my hair had grown back a spikey inch or two, still very short, but I liked it enough to mostly retire the wig. I happened to be in New York City when I made the decision. I figured, it’s New York, the mecca for individuality and unique expression. If I could do it there, I could do it anywhere! Though at one point, while I was at a street market of some kind with vendors selling all kinds of goods and wares, one of them addressed me as sir. It surprised me, but I am 5’11” and I was dressed in a unisex coat, jeans and boots. It didn’t matter anyway, because I felt so happy and free to be shedding the cloak of cancer.
This time around, I’m experiencing gradual, diffuse thinning. I used to wrap an elastic band only a couple of times to create a ponytail; now it requires several twists. And of course, eyebrows and eyelashes are also thinning. I used to routinely apply mascara and never pencil my brows. Now I routinely pencil my brows and have given up on mascara. It helps to be living in Colorado, where many women routinely go makeup-free.
In 2018, my oncologist took me off Faslodex, the drug he had started me on, but was no longer working. My new treatment is part of a clinical trial, which also appealed to me. I like knowing I am contributing to the body of MBC knowledge and hope it will make a difference for others some day.
With the start of the new drug, I began experiencing odd visual sensations—bright white lights that would rippleand wave, like my own personal aurora borealis. The first time it happened I was at a concert, so my first thought was that it was a lighting effect of the show. It was diagnosed as an ocular migraine, though I had no headache or any pain. The disturbances have subsided and now if I experience anything it lasts only a few seconds.
The naturally oily skin I once despised did hold back the dryness and wrinkles that accompany aging, but now that road has come to an end. Living in an arid climate doesn’t help. I’m getting older as my doctor insists on reminding me. And dry skin is one of the side effects of treatment. I could move to a place with high humidity. I could stop aging—and every other bodily process—by ending treatment. Better to keep slathering lotions and creams on my skin.
Side effects are annoying and can be threatening to quality of life, if not life itself. Yet nearly every good thing in life comes with unwanted side effects. Ads for yummy ice cream should include the possible adverse reactions that can come from eating too much, like pimples and weight gain.
I’ve come to recognize and accept that side effects are part of the journey, and they beat the alternative. Life is the silver lining that comes with this cloud.