Home Health Care My Ironic Journey as an SLP With ‘Chemo Brain’

My Ironic Journey as an SLP With ‘Chemo Brain’

by Mary Ann Eller
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I defeated breast cancer, but am still battling the cognitive changes left behind after two years of intense treatment. Eight surgeries, six chemotherapy treatments, 25 radiation appointments, and two bouts of infection changed my body forever.

I’m OK with that, because everything was done to keep me alive. All signs point to these efforts succeeding. But one remnant of the battle didn’t get left behind with the wigs and empty medicine bottles: chemo brain. “Chemo brain” is a common term used for the attention and memory issues often caused by cancer treatment—although these issues are thought to come from multiple sources, not just chemotherapy.

I never imagined this ironic side effect of the cancer battle. I’ve worked as a speech-language pathologist in acute care and rehab for 30 years, and now I faced the same cognitive challenges I’d helped many of my patients overcome. I love my job, my patients, and my work family. Was I going to be able to continue to work full time? Or at all?

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I first noticed my chemo brain when I lead meetings in my small department of four SLPs. We’ve been a team for years and communicate well. But in meetings, I experienced difficulty keeping a thought. I’d get lost in what I was saying and freeze mid-sentence. I couldn’t think of a word so would use another poor substitute. I also struggled to write patient notes, often sitting for prolonged lengths of time in front of my computer, trying to think of common terms.

I knew I was experiencing more than just typical lapses and I couldn’t brush it off as “senior moments.” I wish I could tell you how I applied a standard treatment plan for chemo brain and I’m functioning normally. But a standard treatment plan doesn’t exist and I’m not all better.

My self-designed treatment plan includes medicines provided by a cancer psychiatrist, advice from neuropsychology friends, counseling for adjustment, lots of reading about chemo brain, and figuring out effective organizational changes. The support of my work family gave me the biggest boost toward handling my cognitive challenges and helped prevent additional stress.

I’ve also learned so much more about my attention, executive functioning, and memory. I know what factors affect each of those cognitive domains in both positive and negative ways. It’s like a sliding scale each day, with my abilities changing in response to my inner and outer environments. My experience figuring out how to adjust and treat my own issues also made me a better SLP.

Here’s what I learned:

Take time to know your client. When working with a client with chemo brain—or any client with cognitive issues—get to know who they were before the illness that brought them to you. I really see how important it is to discover my patients’ strengths and goals before deciding on a treatment plan. Ask a lot of questions, including “What bothers you the most?” or “What are your strengths?” and “What’s a typical day for you?”

Define challenges and controllable influences. Help your clients put a name to their issues—attention, memory, executive function—so they can learn about these issues and understand their challenges. Work with them to create a list of positive and negative influences on their performance and teach them how to adjust and plan around those influences. This will empower your clients. Each day I think through my meetings, patient care, and home life. I consider how tired I am, how noisy it is, and how familiar I am with content. I control what I can and adjust for the rest.

Consider educating others.  Teaching your patients to educate others about their situation is a powerful tool. If someone does not feel comfortable doing that, encourage them to find a trusted friend or a counselor who can support them. After many sleepless nights worrying if I could keep doing my job, I decided to open up to my coworkers. They responded with nothing but support and offers of assistance. Without this extra stress, I made fewer mistakes.

My chemo brain isn’t gone, but I am improving. Or maybe I’m just adapting. Either way, I feel more confident at work and at home.  I know my strengths and challenges and take time each day to plan around them. Please get to know your clients, what scares them, and what motivates them. Teach them what affects their thinking and memory and how they can take control over some things. Finally, do your best to help them reach out to those around them.

I think evaluating and treating “chemo brain” will continue to grow in our professional scope of practice, and I hope to be part of the change.

Mary Ann Eller. MA, CCC-SLP, is the clinical services coordinator for speech-language pathology at Duke Regional Hospital, Durham, North Carolina. mary.eller@duke.edu

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Liz September 18, 2019 - 8:24 pm

Thank you for this incredible insight into what our patients experience. 3 cheers to you for overcoming this and continuing to work. You are a true inspiration!!

Mary Ann September 23, 2019 - 2:25 pm

Liz, you are so wonderful to say so. It’s so funny how our weaknesses can become inspirations!
Mary Ann

Lisa September 19, 2019 - 11:47 pm

As an SLP and breast cancer survivor of many years it is so heartening to read this. Not enough attention is paid to chemo brain and its permanent effects. I am grateful for every day of life even with the long term side effects of treatment. My only wish is that others would be become more aware of these effects. I have been using my word retrieval skills for over 13 years now. It’s looks I sometime get from other SLPs when I struggle. We need to continue to raise awareness in our profession, not only for clients but for colleagues too!

Mary Ann September 23, 2019 - 2:30 pm

I’m sure you are doing great! And if a speech therapist gives someone a weird look for word-finding problems, then there’s another problem! I’m going to be doing a podcast about this on “Breast Cancer Recovery Coach.” Hope you check it out. It’s a great podcast and website.

Mary Ann

Mary Marche September 19, 2019 - 11:53 pm

Thank you for your dedicated insights. I too underwent cancer treatment with surgery, chemo, and radiation. You are spot on with your blog. I am 3 years out and amazed at how real the effects are. As you said, assessing and working to improve my own deficits really led to improvement in my interventions and interactions. I’m still amazed when I run across some major failures from the early time and impressed when I recognize a successful outcome that my new insights helped bring about. I remain gratefully appreciative of my peer/friend support system. I stand on the shoulders of giants. Thank you for frank and open sharing.

Ellen Bernstein-Ellis September 20, 2019 - 12:36 pm

Thank you for such an important article, especially as I see what seems like an increased incidence of breast cancer among my circle of friends and colleagues. Hopefully raising awareness of this potential treatment sequelae will help us promote the value of appropriate screenings and referrals for SLP services. Many breast cancer survivors are trying to maintain employment, making this issue even more critical. You described its impact and importance beautifully. Experiencing life as a sonsumer of services instead of as a provider is often a game changer in what we bring to the clinical table. Thank you for sharing your story.

Rayana September 22, 2019 - 7:56 am

thank you so much for sharing your story. It is very helpful to hear from a fellow SLP about the challenges of chemo brain. I’ll definitely use that with my patients.

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