Summary:
Patient advocate and cancer warrior, Megan-Claire Chase shares what it’s like to have “chemo brain.” She walks through the causes and symptoms of this condition, the alternative names it can be known by (chemo fog, brain fog), and most importantly what it feels like for patients who experience it. While patients are often told chemo brain is temporary, many patients have shared that they notice the effects for long periods of time after. The results of chemo brain can sometimes be funny, but they can also be debilitating. Megan-Claire shares some things patients can do to counteract chemo brain, and closes by discussing why clinical trials are so important for helping patients suffering from chemo brain in the future.
The Chemo Brain Experience
I remember the first time I heard the term chemo brain from my oncologist. It was right before I started what would eventually become 16 rounds of chemotherapy for invasive lobular breast cancer. She made it seem light, temporary, and like a slight annoyance.
For those outside of the cancer world, chemo brain, also referred to as “chemo fog” or “brain fog,” can impair a cancer patient’s cognitive function. They can start to have difficulty processing information. It is a legitimate condition that can be caused by more than just chemotherapy. According to the Cleveland Clinic, it can be caused by the following:
· Bone marrow transplant
· Chemotherapy
· Hormone therapy
· Immunotherapy
· Radiation therapy
· Surgery
· Targeted drug therapy
When I developed chemo brain, I did not even realize it was happening. Suddenly, I would forget having conversations with my mother or friends. I really noticed the cognitive deficiencies while at work. I could not remember how to do certain tasks or work with software that was previously second-nature to me. Every project and task took longer to complete than before.
It was like my thoughts entered a black hole and remained there. I literally had no memory of conversations, places I had been to, and the things I had done. None. That is when I determined that calling this side effect chemo brain is too benign and too cute. The name does not fully reflect how debilitating and scary it can be for cancer patients. It felt more to me like a brain injury than a side effect.
The Mayo Clinic has a comprehensive list of the signs and symptoms of chemo brain:
· Being unusually disorganized
· Confusion
· Difficulty concentrating
· Difficulty finding the right word
· Difficulty learning new skills
· Difficulty multitasking
· Feeling of mental fogginess
· Short attention span
· Short-term memory problems
· Taking longer than usual to complete routine tasks
· Trouble with verbal memory, such as remembering a conversation
· Trouble with visual memory, such as recalling an image or list of words
While sometimes chemo brain can be scary and frustrating, it can also make you laugh. This humorous instance happened in January of this year.
I usually check my mail 1 to 2 times a week because I must drive to get to it in my apartment complex. On this day, I had a lovely surprise when I checked my mailbox.
It was this gorgeous French beret. I thought a friend had sent it since I have friends who are thoughtful, generous, and love to send surprises. I was so excited about this gift that I had posted on my social media about it, asking who sent it so I could thank them. I thought it must be someone close to me because they nailed the style and color perfectly.
A few days later, I decided to check my wish list on Amazon to see if I could find a clue as to who sent this stunning hat. I discovered that I had ordered it. I literally had zero memory of ever ordering it. So, it is times like that where residual chemo brain comes in handy and the outcome of actions is a delightful surprise.
What our medical team, family, friends, and coworkers need to understand is this is not like just forgetting what we said and then the memory comes back. There is literally no recollection of what happened, what was said or even what we were in the middle of saying. Chemo brain continues to cause constant anxiety four years post-chemo, especially when leading a meeting or being interviewed because I forget the words I need to say to convey an opinion or thought. I have lost some confidence which is a huge blow to my ego because I no longer sound informed, intelligent, and witty. Instead, I sound flakey, awkward, and like an airhead.
Some physicians say chemo brain is temporary, lasting a few months but will gradually fade after chemotherapy treatment is over, but that opinion completely negates my experience, and contradicts that of many others. When I asked for some quotes from the cancer community on how chemo brain has affected them, the response was enormous on Twitter and Facebook. I heard from men and women all over the world who expressed the same frustration, anxiety, and anger that I feel. Chemo brain can affect all aspects of our lives and is not short-term like many physicians state. The patient experiences shared with me ranged from those who were a few months or a few years post-cancer to some who were more than 10 years post-cancer and still had noticeable cognitive issues.
Here is a general list of things from the Cleveland Clinic that cancer patients can do to improve their cognitive function when living with chemo brain.
- Avoiding multitasking
- Creating daily routines that are easy to follow
- Eating healthy foods including vegetables
- Exercising regularly
- Getting plenty of rest and sleep
- Keeping detailed notes and reminders in a daily planner
- Stimulating your brain with puzzles or learning something new
- Getting support through counseling and/or groups
While I did many of the things suggested above, I added one additional point that has helped improve my cognitive function – reading out loud. I read pages from books or from a high-brow magazine like The New Yorker where I must think, focus, and process what I am reading out loud. It sounds so basic but is a big help for me.
Since every cancer patient is different, there are no ways to tell who will be affected by chemo brain or how long it will last. We need more clinical trials studying the effects of chemo brain so it can be treated or minimized. All cancer patients can do is extend grace with themselves but also seek support within the cancer community because only those who have experienced it will fully understand the gravity of it.
Additionally, chemo brain underlines the high need for new and better cancer treatments. While side effects, such as chemo brain, remain, the unmet need for new treatments remains as well. Clinical trials are a way to access innovative treatments that may not only be more effective than the standard of care, such as chemo, but that more importantly may offer more tolerability, fewer side effects and less toxicity. It may seem that harsher treatments are necessary to treat cancer, but true innovation will be effective treatments that also preserve quality of life, such as cognitive function and a clear mind, for cancer survivors and those with metastatic cancer.
If you want to learn more about clinical trials, you can start your search with Ancora.ai or reach out to them at info@ancora.ai to ask any questions you may have.
About the author:
Megan-Claire Chase, also known as Warrior Megsie, is a 4-year breast cancer survivor in Atlanta, GA. She is a sought-after influencer and blogger in the Young Adult Cancer community both nationally and internationally. Her blog, Life on the Cancer Train, is about her life post breast cancer (Stage IIA Invasive Lobular) and the struggles of being a young adult cancer patient/survivor while advocating for better treatments and resources. Megan-Claire’s writing is known for being authentic, raw, and informative with a twist of humor. It is also syndicated on Cancer Health Magazine’s website. She’s been a guest blogger for multiple cancer support sites including Lacuna Loft, SHARE Cancer Support, and Humor Beats Cancer. Megan-Claire was featured this year in The New York Times in April and People magazine in June discussing the concerns of receiving cancer treatments during COVID-19. Her cat Nathan (Natey) Edgar is her pride and joy.