There is a little known secret that is well… not well-known. After treatment is done, side effects can suddenly show up and/or worsen. How is this fair? I accept that during treatment my body should feel its worse. After treatment rays of sunlight should hit my body with a wonderful aura and I will suddenly be back to normal (A.K.A the Beauty and the Beast Recovery.. just in my case for a woman not a man).
However my neuropathy is still annoying me and making my day-to-day life more difficult. Typing is still a chore. I mistype so much. I actually hate typing any more. I suspect that people tire of my complaints on this but it does make my life frustrating and difficult. Buttons, zippers, ketchup packages… They all pose a frustration that I avoid whenever I can.
However on Thursday night a new thing showed. I was at the first meeting for my cancer study and was chatting with another gal who was there. We started talking about how chemo fog was annoying during treatment. I talked about how I couldn’t do basic math after 2 treatments (doing an engineering based job.. that was difficult to swallow). The study leader came in and talked to us about how they have started doing studies on chemo fog/chemo brain. Apparently a correlation between people who struggled with the cold sensitivity, neuropathy and chemo fog have been found. It has something to do with those of us that did struggle with it, that the result was the brain remapped after treatment. The mapping showed some basic puzzle activities and thoughts were being processed in different parts of the brain post treatment. Those that struggled with these nerve based issues also had a greater likelihood of nerve damage remaining afterwards.
For all of my treatment I had not heard anything like this. It was shocking. And to be honest I have been distracted by the neuropathy frustration. So on Friday I started processing it and it wasn’t a pretty sight. It was a pretty devastating thing. I wrote down things that are mentally different from before treatment and after treatment. Here’s the list:
- Can’t multitask as well
- Easily distracted… Squirrel!
- Difficult to problem solve
- Feels like moving through sludge when thinking a lot
- Can’t seem to read for fun like I used to
- Math takes a lot more work then it used to
- Terrible memory. I have to write everything down, however I lose the list just as frequently
- Struggle to manage my day-to-day “To Do’s” … most just never happen
- Attention to detail is almost non-existent
- Mental things exhaust me
- Learning new mental things just feels like a hurdle I do not want to deal with
When I looked at this list, my jaw dropped. I then looked up about chemo fog/brain. http://www.cancercare.org/publications/72-cognitive_problems_after_chemotherapy OMG!!!
To say I broke down would be a mild understatement. My brain, the one thing about me that I was most proud of is non-existent. It isn’t that it just disappeared last week. It is that it disappeared during treatment and hasn’t returned. 6 months after my last treatment and I see no signs of things getting better. Anything that fought against the stuff listed above, I just avoid. I stopped reading for leisure. I stopped trying to learn new things that were complex. Tasks at work that were too difficult I pushed off till I couldn’t any more.
But the good news is that I am happier. And that is a wonderful thing. The brain and the neuropathy excluded I am so very much happier. It is like I can see the forest instead of the trees, I can actually see the rainbow and not the light waves behind it.
However I want both. I want my brain and nerve endings, and I want to be happy. I do not think they need t exclude each other. The one thing I took pride in may never return and that is a devastating thought. That is a horrible, terrible thought. And honestly, it puts a cloud over so much.
This past weekend was the Steampunk World’s Fair with Kiddo and The Knight. However, internally I was battling with this. It made the weekend less than it should have been. I didn’t share this problem with them because I didn’t want it troubling them. But I also know I wasn’t completely me. I tried to compartmentalize what was going on, however I am sure I didn’t do a perfect job.
And now I am sitting at my desk wondering how to work with this new-found difficulty and I do not know. On Friday I spoke with a counselor at Cancer Cares and they helped a good bit at putting things into perspective. However I feel disabled now. I feel like a piece of me is missing and won’t come back. I feel like those that enjoyed my brain before will like me less for being less. I feel like I am a different person.
And as legitment or illegitament those feelings are, they are still there. They are still plaguing my mind. And there is no answer for what to do. Is this my “New Normal’? Will this change in time? I do not know. I am almost afraid to get my hopes up.
Sorry to end this on a cloudy note… I just do not know how to see the rays of sunlight yet for this one….