No matter how far you think you’ve gotten away from them, cancer’s side effects are always in your rear-view mirror, writes this caregiver.
My daughter officially finished active cancer treatment, including 20 weeks of chemotherapy and six weeks of five-days-a-week radiation, on February 14, 2020. She was challenged with the typical side effects that comes with her oncologist choosing an aggressive treatment plan from the get-go because being diagnosed with breast cancer at 27 is a very scary proposition.
I use the term “typical” in the sense of typical for the types of chemotherapy and radiation she received and the ones that are typical in the public perception. Nausea … check. Hair loss … check. Radiation sunburn … check. And once those treatments were over, those typical side effects ended with them.Her appetite came back, her hair grew in, and her skin had mostly gone back to its pre-radiation color.
What isn’t part of the public perception is the lingering side effects that some people who have undergone these types of treatments deal with for months, for years, or for the rest of their lives. And that they can appear months or years later just when you think you’ve put the cancer experience in your rear-view mirror.
Four months after the last chemotherapy bag finished dripping, Adrienne called me to tell me that her eyebrows and eyelashes were falling out … again. She had watched with hesitant joy as they grew back in and would keep me updated as each new six or seven hairs would appear until they had filled back in just as they were before. On the morning she called, she had been dragged out of denial that they were falling out again by seeing a pile of them on her makeup removal pad and she was sobbing as she asked me if I had ever heard of that.
I hadn’t, but I was able to find out that it does, indeed, happen. Facial hair can go through cycles of growth and falling out for months after treatment is finished until they achieve a balance between normal growth and shedding.
Eight months after Adrienne finished radiation, a rash appeared all over her upper left chest which was the side the breast cancer was on. There was also a spot of it on her upper back where she had experienced a radiation burn. We tried very hard not to panic as she reached out to her oncologist to see him to get his opinion because inflammatory breast cancer often presents with the affected breast being covered in a rash.
The only thing that saved our sanity was that spot on her back. The oncologist diagnosed it as radiation recall dermatitis, which is a rash that can appear long after radiation is over.A biopsy confirmed it later that week. And it’s a lifelong issue that will flare up without warning.
A year after Adrienne’s third and final surgery, she found that she was struggling more and more with range of motion in her left arm. The last surgery was to remove lymph nodes in her left armpit, and despite doing everything right to ensure her left hand could climb a wall as high as her right, regardless of her diligence at doing the exercises recommended to not have her arm movement restricted, she has developed cording in her arm, a restriction that impacts everything in her day because she is left handed.
Fourteen months after Adrienne completed chemo, her doctor did blood work and was concerned about some of her liver numbers. She decided to repeat the test two months later and the numbers had gotten worse, so she ordered an abdominal ultrasound to check out her liver. We are still waiting on that one. In the meantime, my daughter has to manage having too much iron in her blood from the chemotherapy-induced liver damage. The girl who loves spinach and broccoli and whole grains now has to change her diet to lower her iron intake.
I have written many times that cancer is a never-ending story, and this is one of the biggest reasons why. The lingering and sometimes new side effects that come with the life-saving treatment people undergo to save them from cancer’s invasion constantly remind them that, “Hey, remember you had cancer?”
And I haven’t even touched on the emotional baggage that has to be carried. When you’re as young as much daughter was, if her remission holds, that’s a long time to be dealing with things that she had no idea she’d be looking at when treatment began.
And it’s a long time for me to pick up the phone and hear her resigned voice tell me one more thing is happening. I want so much for this story to have a happier ending for her than it has right now.But all I can do is raise my fist and silently yell, “Come on, universe.Enough already.” And to be very, very grateful that she’s still around so I can be angry about it.
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