Chemo fog, or chemo brain, is a very real phenomena that cancer survivors need to be knowledgeable about. This describes the journey of one survivor.
Jane has earned three advanced degrees and had several fulfilling careers as a librarian, rehabilitation counselor and college teacher. Presently she does freelance writing. Her articles include the subjects of hearing loss and deafness, service dogs and struggling with cancer. She has been a cancer survivor since 2010.
She has myelodysplastic syndrome, which is rare, and would love to communicate with others who have MDS.
I am almost 67 years old. So now I am considered “elderly.” It was really a shock the first time a student called me that!
For years before that benchmark, I had joked about becoming old. I would laugh about forgetting things without writing them down. However, behind my comments was an edge because my father had Alzheimer’s and died from choking. My biggest fear is to develop that disease.
This may be the reason I hate the chemo fog so much. One of the most embarrassing moments of my life was when I was at a local bank and couldn’t remember my phone number! I remedied that by putting my own number in my cell phone. I apologized profusely to the bank employee and he was very gracious about it. I still am not sure he believed me when I blamed chemo fog. Most people do not understand this problem.
I taught at college for seven years after being diagnosed with cancer. We all know chemo is cumulative and the fog only gets worse with time. I remember during the last couple of years, I would be lecturing and had to search for certain well-known words in a lecture I knew by heart. A scary little infinitesimal pause would happen until I found the word. I’m not sure the students ever noticed, it but I did. I wondered how long I would be able to continue teaching. This cut me to the core, since I was passionate about my students.
Fortunately – or unfortunately – my cancer worsened and I was forced to resign for physical reasons. I was honestly relieved that decision was made by my doctor.
Only another person with chemo fog can understand the panic when searching for a certain word or phrase. My friends and family often see me struggle and supply the missing words for me. Before chemo fog, I would sometimes forget a word or phrase but remember the phrase later. Now I do not retain the word or phrase at all.
I have a Ph.D. in counseling and have carefully studied the brain. The short-term memory is usually the part affected by dementia or head trauma. If one talks to a person with dementia, they may remember events from a long time ago, but not what they had for breakfast. Much publicity has been generated on concussions and the damage to the brain in sports. Presently, the American Cancer Society is doing some research on “chemo brain” as they call it. Doctors are exploring ways to protect the brain from the side effects of chemo. This is positive news for cancer survivors!
To compound my problem, I will be on chemo the rest of my life – however long it is. The chemo has accumulated in my system for seven long years. However, people who have stopped chemo tell me remnants of chemo fog remain years later. And I believe them.
Another fact that complicates everything for me is that am profoundly deaf. I was born hard of hearing, but the side effects of the chemo caused me to go from severe to profound deafness.
This results in many errors in communication. I don’t hear people calling me. Recently, a TSA official screamed at me at the airport for not stopping when she yelled at me. I held up a line at Starbucks because the barista kept asking me if I wanted “wimp” coffee (my interpretation) when she meant “whip.” I frequently respond with wrong answers or ignore people because I don’t hear them. So now many people think I am either snooty or stupid – take your pick.
It is impossible to explain chemo fog to people. I have had well-meaning friends make fun of me “losing my mind.”
So now I have two choices. I can spend a lot of time explaining to people I am suffering from cancer treatments and am deaf, or say nothing. All of us face this challenge sooner or later.
What is the solution? I usually try to tell family and close friends what is really happening. I find most acquaintances are too busy or involved to care and unless they are really digging, I say nothing.
I am eternally grateful for CURE. Every evening, I get on my computer and read articles from people who are going through what I am. Thank you all for sharing.
Finally, I keep my sense of humor and perspective. Some of this is rather funny and the rest of it I cope by asking myself one question. Is it really important in the scheme of things what people think of me? After all – I am a cancer survivor and I am alive!