Wednesday, April 11, 2018

Stumbling Around in the Fog

As of this writing, my last chemotherapy treatment was 20 months ago, but I am still finding myself heavily entrenched in the “chemo fog.” Though the term brings to mind cobblestoned alleyways in Victorian England filled with visibility-cloaking vapor and top-hatted gentlemen lurking in the shadows (that’s how everyone pictures fog, right?), the real deal is much less romantic. Much less mysterious.
Mayo Clinic defines chemo fog as: A common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo fog can also be called chemo brain, chemotherapy-related cognitive impairment or cognitive dysfunction.
Sounds delightful, huh?
During chemo, I spent so much time asleep on my couch, that the fog was not an issue. Then I had a bilateral mastectomy, and the all-encompassing pain of recovery trumped any cognitive concerns. Surgery was followed up by radiation, which again made the fog feel like nothing more than a mosquito bite on a burn victim. Then I had a second surgery to remove my ovaries. Again, I didn’t give a single passing thought to my thoughts.
But now that I am all done? Now that I am cancer-free and adapting to my new normal? The cognitive issues loom large in my mind. Literally and figuratively.
So what type of issues am I having, you ask?
I forget things. I sometimes forget things Ruanita says to me almost as soon as she says them. I forget to do things I tell the kids I am going to do, to their great disappointment. For the first time ever in my life, words are hard. I often find myself, in the middle of a conversation, saying a completely wrong word that has nothing to do with what I am saying. I think it is the right word – until it comes out of my mouth followed by an exclamation of, “What the hell?!” (Okay, full disclosure. Sometimes it’s, “What the fuck?!”) Or I can’t think of a common word at all. I will be in the middle of talking and will stumble over my words. I’ll have to ask, “Ruanita, what is the word I’m trying to think of?” Usually she knows. Twenty years of marriage has that effect. I also have trouble multitasking. If my attention is focused on one thing (reading a book, typing on my laptop), I cannot have a conversation. I can’t focus on more than one thing at a time. Driving is sometimes tough. If I am driving and talking to someone in the car at the same time, I tend to get rattled. Drive through stop signs. Stop in the middle of the street.  Not notice when the light turns to green. I get honked at a lot these days – I have no idea why. I let Ruanita drive more often lately when we are together, which is a huge concession on my part as I have always been the driver in our house and, frankly, Ruanita’s driving scares the holy shit out of me a tiny bit.
For someone who has always prided herself on her intellect, independence, and crafty turn of phrase, I am feeling particularly DUMB and USELESS lately. If my mind was intact, I could better deal with the changes in my body. But with the cognitive issues I’ve been having, it’s easy to feel like my body has forsaken me in Every. Single. Way. And. Means. Possible. (Geez – dramatic much, Shannon?)
Fear not, however. I have SCIENCE!
I just qualified to participate in my 4th clinical study. This one is being sponsored by Wake Forest University and is looking at ways to treat the chemo fog in breast cancer survivors who are experiencing cognitive deficiencies as a result of the strong chemo drugs they use for breast cancer treatment.
I wasn’t sure I would meet the requirements, as I have tried to play off the cognitive issues as “not that bad” or “not too serious.” However, when my doctor recommended the study, I decided to at least see if I would meet the requirements.  
The assessment consisted of a very simple cognitive test. The study nurse read a list of 12 unrelated words. I was supposed to listen and then immediately repeat back as many words as I could remember. The cut-off to participate in the study was being able to repeat seven or fewer words from the list. Piece of cake! I focused intently – excited to prove to myself that I was still sharp. That I was still smart. That I was still me.
As the nurse read the words, I repeated them in my head. When she finished, I immediately repeated back the first four words from the list. Then I paused, wracking my brain to come up with the next word. I knew the 12th word because it was the last word she had said and was the freshest in my memory. I sat and stared at her. I chuckled nervously. I thought and thought and thought some more. Nothing. In the end, I could come up with nothing more than the first four words and the last word – five in total. FIVE. Well below the seven-word cut-off.
Fuck. Me.
(Did I ever mention that cathartic cursing is a byproduct of cancer survivorship?)
I qualified. I am now officially a registered participant in Clinical Trial WFU97116 – A Phase 3 Placebo Controlled Clinical Trial of Donepezil in Chemotherapy Exposed Breast Cancer Survivors with Cognitive Impairment. What is Donepezil? It’s the drug used to treat….wait for it…this is exciting…Alzheimer’s Disease!
I am actually excited about the prospects of:
  1. Finding some possible relief to my symptoms
  2. Being able to once again pull appropriate words from the dark and dusty recesses of my mind rather than uttering the brilliant, “Ummm…uh…ummm”
  3. Contributing to science in some sort of meaningful way that may help the women who come after me
It’s a double blind study, so neither I nor my doctor will know if I am getting Donepezil or a placebo. I suspect I might know if I get the study drug simply based on the side effects – nausea, possible vomiting, and diarrhea (tapering off as the body adjusts to the medication). I have a sensitive stomach, so if there are stomach-related side effects even in the itsy bitsy teeny tiny microscopic print, I will likely experience them.
I pick up the drug tomorrow and start it immediately. If I receive Donepezil and not the placebo, I fully suspect that I will be asked to join MENSA when it is all said and done. I expect to suddenly have a freakishly complete understanding of organic chemistry. And the words flowing forth from my lips will awe the likes of Zadie Smith and Ann Patchett.
On the off chance that I do not become a raging intellectual, I have started reading more and exercising as both are said to help with cognitive deficiencies.
You know, just in case.



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