Jane is a ten-year survivor of a very rare form of cancer Myelodysplastic Syndrome. She has enjoyed several exciting careers including a librarian, counselor, teacher, and writer. She loves to write about surviving cancer, overcoming hearing loss, and her hearing ear service dog, Sita.
I laughed after I put my soiled laundry in the wastepaper bin in my bathroom instead of the laundry hamper. When I told my oncologist, she didn’t think it was funny at all.
Yes, it seems funny when I tell people my stories. I go and open a can of tuna for my dog and cat. They are both spoiled fur babies and love their nighttime tuna treat. The next evening, I go to the refrigerator and cannot find the tuna. Shrugging, I think to myself that I could not have possibly given them the whole can the night before. I open the cupboard and realize I put the leftover tuna on the shelf instead!
I laughed after I put my soiled laundry in the wastepaper bin in my bathroom instead of the laundry hamper. When I told my oncologist, she didn’t think it was funny at all. I think she knew I was not entirely joking and was hurting.
It is embarrassing when I have to email friends and ask them if I sent them a thank you note. I am pretty good about writing down gifts or what someone has done for me and making a list of contacts. The problem is after I send the cards I find myself wracking my brain to remember if I, indeed, had written them. I have traditionally been pretty good about making lists when I go to the grocery store or shopping. But now I keep the lists a little longer so I know what I have done or bought.
And that search for words that I truly know makes me crazy. My friends and family try to help me, but I feel like a little kid sometimes.
Some of these events sound flippant and unimportant, but they are not to me. This is chemo fog. I was a rehabilitation counselor for several years and worked with people with traumatic brain injuries or traumatic head injuries. I thought I understood what people were going through, but the proverbial “You don’t understand until it happens to you,” is true.
I do try to handle these incidents with grace, but I know it is not amusing. I feel very fortunate because several people with cancer, especially people who have fought it as long as I have, tell me their sad stories. They explain how one friend after another slowly fades away and is not around when they need them. This has not happened to me, and I feel lucky for that. But I also make a conscious effor not to have my cancer be the focus of every conversation. I may tell someone who asks that my blood counts are up or down, but that is the extent of it. My closest friends and family know that I have already lived longer than most people with this cancer, and I share that this concerns me. However, I still talk about my writing, books I am reading, travels I have taken and sports I enjoy because I honestly think people would rather hear about that. I do attempt to laugh off the frustrating side effects like chemo fog, because humor offsets a lot of other emotions that would normally spill out.
I have found one huge coping mechanisms for the constant forgetting. I find myself doing what I advised my clients to do for years as a counselor: write everything down!
I have a calendar that I live by. If it is not in there, I will forget an appointment or lunch date. I am religious about putting everything in that little black book, because if I don’t, trouble ensues.
Another bit of advice I have is not to leave lists in different places around the house. Rather, keep them all in one place. Many people put everything in their cell phone and that works, too. I am just not as handy with this technology as some people, and it is quicker for me to write things down with paper and pen.
Do not trust yourself to go to the grocery store or anywhere else and think you will remember items you need in your head. ABC news actually did a segment on “Good Morning America” explaining why most people can only remember a maximum of seven numbers or items. It is too complicated to explain here, but if you read this article and the explanation of the way our brain is wired to remember only a few digits, you will be intrigued. I wonder if that is why telephone numbers in the U.S. are traditionally seven numbers.
I had to think about this — if a maximum an average person can remember is seven, why do I think I can go and remember five or six items or more? I used to be able to, but not now. I have found my maximum is three. Again, lists can be your friend if you want to pick up accurately more than two items.
The people who are researching this phenomenon are labeling it “chemo brain.” There are several great articles appearing from agencies such as the Mayo Clinic and the American Cancer Society. Great strides are being made by the manufacturers to try clinical trials for drugs that don’t cause this foggy state. I think it is fantastic that finally the medical profession is recognizing what a problem this is. In the meantime instead of getting exasperated, I need to remember that the same chemo causing me to forget things is also giving me one more precious day!