Communicating to others about long-term side effects: Katie Shaw-Younkerman
During active treatment for stage III breast cancer, Katie Shaw-Younkerman, of Highlands Ranch, Colorado, then 36, took a leave of absence from her job as an elementary school teacher. Her oncologist and nurse both advised her to do that because working around young children could pose risks to her weakened immune system.
After having a double mastectomy, chemotherapy, radiation, and reconstructive surgery, Katie returned to full-time teaching in September 2015. For 3 weeks, she struggled to work despite on-going side effects from treatment, including getting tired more quickly, weakened immunity, and severe peripheral neuropathy. One day, she felt so poorly that she went to the hospital emergency room. She had sepsis, a potentially life-threatening response to infection.
Katie eventually retired. Now 41, she continues to have long-term effects from treatment. Katie spoke with LBBC contributing writer Robin Warshaw about how difficult it often is for family and friends to understand what she is experiencing.
Robin: Your neuropathy started during chemotherapy and continues now, 5 years later. What does it feel like?
Katie: People think neuropathy only affects your hands and feet, but it affects your whole system. If I’ve overdone it, I feel like I have the flu. Every muscle hurts. I feel like I could crawl out of my skin. To me, that is the worst pain.
No matter what I do, I can’t get rid of the pain. Stuff touching my skin, particularly my back, is extremely painful. My hands and feet feel like they’re on fire.
My oncologist and nurses acted like the neuropathy was all in my head. I was eventually treated with pregabalin (Lyrica) but didn’t like that it made me feel out of it. I went off it and took Percoset (acetaminophen and oxycodone) at night for the pain. In order to save my life, I continued with paclitaxel (Taxol) chemotherapy. I was willing to take the risk of peripheral neuropathy. I wanted to live for my daughters.
Robin: When you landed in the hospital with sepsis after returning to work, did it change how you thought about your recovery from breast cancer treatment?
Katie: It was kind of a realization that I was not going to be able to get back to the person I was before diagnosis. My daughters were 4 and 6 years old when I was diagnosed, I had a full-time job, I was supermom, with Pinterest parties and all. I tried to get back to that and, within 3 weeks, I had gone down.
I think I was trying to live up to everyone’s expectations. A lot of people thought when I finished my last treatment that – boom! – I’m done and let’s get back to life. And I thought, “Okay, this is what I’m supposed to do.”
Robin: What happened after you had sepsis?
Katie: I worked as a part-time teacher for the school year, 2015-16. I have a principal’s license, so I was also running the building whenever the leaders left. Once we had a gas leak and I had to evacuate all the kids. After days like that, I would end up in bed.
Writing, typing, doing a lot of computer work, is extremely painful because of my neuropathy. It would take me forever to get stuff done on the computer because it was so uncomfortable for me. A lot of people didn’t know my husband ended up being my typist.
During the summer of 2016, the neuropathy got progressively worse. I couldn’t write, I couldn’t do my kids’ hair. I sat down with my principal and HR manager and I was honest with them. I went back on full-time leave.
In November, when I reached my maximum for disability leave, they told me they were reviewing my case for disability retirement. I was devastated because I was only 38, even though I knew what my limitations were. After 6 months without income, I was approved. Every 3 years I go through a full medical review to see if I’m still disabled. My health remains unchanged.
Robin: Do you have other long-term effects of breast cancer treatment?
Katie: Since I retired, I’ve been recovering from something related to my cancer. I had a total hysterectomy and then broke my leg because of the neuropathy.
My immune system has yet to recover. My neutrophils and white blood cell counts are still not in normal range. Every day, I deal with some degree of pain. If I hit a wall, I get super tired and end up in bed.
Cognitively, I still have chemobrain. I’m a sharp person, I just have a hard time communicating. My working memory is terrible.
Robin: What types of reactions do you get from people about your situation?
Katie: The comments I get are insensitive at times. When we were reviewing the paperwork for my retirement, one family member said to me, “Why are you doing this? You need to get back to normal for your kids.” I’m trying so hard.
They don’t see me with a cane or in a wheelchair. It’s an invisible illness. They can’t contemplate what that’s like. I look healthy and many don’t understand the lifelong implications of treatment. At times, I am forced to hide the pain.
During treatment, I had a huge community of support because I worked in a school. When I finished, that support went away. I have a couple of female friends who have been consistent and know I deal with chronic pain.
It’s caused a lot of issues. I prefer to have people come to my house because I can rest up and be comfortable. Some people misinterpret it as I don’t like them.
Robin: Has communicating about your experiences helped others understand?
Katie: To some degree, I show people when I’m having a bad day. I share my pain on social media about 20 percent of the time. If it makes people realize that it goes on and on, even after a 5-year bout, then I’m helping other people. I’ve also been open on social media about a panic disorder I developed from treatment.
I control the information I give people. My husband, my kids (now 9 and 11), my mom and dad, know what I deal with every day. Everyone else sees what they want to see or a manufactured version that I give them.
I’ve learned not to always talk about my health. A whole lot of people, even family members, don’t want to hear about the pain I deal with as a result of treatment.
Robin: How do you handle the insensitivity of some people, even after you’ve talked with them?
Katie: I used to let it get to me. But now I’ve learned, with a lot of therapy, to see it as that’s their perception. They’re using what little information they have to make a judgment on me. They’re not curious to learn any more, so I just leave it at that.
Robin: How do you take care of yourself?
Katie: Retirement has been the best solution for me. I can rest when I need to and go to see my medical providers. Having the daytime available lets me be at my best for my daughters, family, and friends.
Therapy is a huge part of my treatment. I’m finally coming to a good place with accepting the person I evolved to be after all this hell. I also take medicines for my pain, to help me sleep and for my panic disorder. My husband bought me a weighted blanket and I can’t sleep or rest without it. I take lots of baths. I also have a massage therapist. Those things are used when I am at my limit.
I now work with the Department of Defense Breast Cancer Research Program reviewing grant applications. That takes me longer than others but I need to use my brain. I’m also involved in Project Peace, a Denver organization that gives learning resources to kids. I volunteer because I don’t feel worthy as a human being if I’m not giving back.
Most importantly, I am here for my daughters, watching them grow up. Cancer treatment is a balance between quality and quantity of life.
This article was supported by the Grant or Cooperative Agreement Number 1 U58 DP005403, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.