One of the most interesting side effects from my last chemo treatment is peripheral neuropathy. The American Cancer Society defines this as "a set of symptoms caused by the damage to the nerves that are away from the brain and spinal cord. These distant nerves are called peripheral nerves. They carry sensations (feelings) to the brain and control the movement of our arms and legs. They also control the bladder and bowel."
This specific cause of my tingling fingers and feet was the drug oxaliplatin, which I would receive every two weeks. As I have mentioned, probably too many times in my blog, this was not always easy to deal with. There was slight tingling in my hands at first, which increased over time to become intense tingling. It eventually spread to my feet, and was intensified by cold or moving air. By the time I finished my first round of chemo in December, I needed to be sure I had on double mittens and socks on whenever I left the house. I started wearing slippers everywhere in the house, except the shower. If I could have worn them there, I would have. I would often wear my mittens indoors if my hands started to get too cold. I had figured out a system for dealing with this inconvenience, and it worked.
Once I finished that chemo, I learned the neuropathy would continue to worsen for about two months before starting to get better. I thought I was prepared for this, although not really sure to what degree things could get worse. When I went in to have my ostomy reversed, I found out. In just a matter of a few days, my hands and feet went from feeling tingly to being completely numb.
Numb feet are weird to experience, but aside from having to concentrate on balance occasionally, it didn't really seem like that big a challenge. If I had to drive to work every day it may have been worse, but my commute is walking down my stairs. That was no problem. At night when I went to bed, the numbness would creep up my legs, like a numbness knee sock. It felt weird, but didn't affect too much, except on the nights I would poke Steve too hard with my toes. He didn't really like that, but didn't tell me about it for the longest time, because he knew I couldn't feel it. He just lived in fear of my feet.
Numb hands are another experience altogether. There are things you count on your hands for everyday, and you don't think about them for a moment. Reach into your handbag to grab a pen? No problem. You know just what it feels like. Try it with numb fingers, and you can't tell the difference between a pen, your phone, or any number of things that might be lurking there. Is that money or a coupon? Is that one bill, one page, or five? Everything feels thick and nondescript. At some point I realized I needed to be extra aware of where I was putting my hands, because I could easily puncture my flesh without even realizing it. Uncovered pens, open name tags or scissors could be lurking anywhere.
Hot things were also a big concern. After living life knowing that touching something hot would result in an uncomfortable burn, you would think this would be so second nature. Reaching for a hot pot without a pot holder would not even enter your mind. Except that sometimes the pot lid might not be too hot and it can be quickly grabbed off unaided. What if the pot holder slips and you don't realize your skin is in contact with a burning hot handle right away. Imagine having to remind yourself constantly that even though you can't feel it, it can still hurt you. I would need to remind myself every time I was cooking to use a pot holder, even if I thought it was something that wasn't too hot, just in case. There were numerous times I had to stop myself from reaching for something hot with my bare hands. I understand why this is such a concern for older people now.
There are so many fine motor skills that are not exactly impossible, but hardly seem worth the time or frustration to do. Button buttons? A zipper is better. Jewelery clasps and earring backs? The unadorned look is just fine. Cutting fingernails? How about a manicure from a trusted partner or friend. Typing? Give yourself twice as much time. Hand sewing? Don't be ridiculous!
At this point today, I am three and a half months out from my last oxaliplatin chemo. I have made it though the worst of it, and things seem to be slowly but steadily improving. Dr. Safran says the nerve damage should be all gone by the start of summer. Sometime in the last month I realized I could feel my two hands as I held them together, a sensation that I hadn't felt in two months. I can type as well as I could before I started chemo, my fingers rarely drift now, and my speed is about where it was before.
Yesterday when I took off my socks before bed, my ankles and legs started to feel itchy in that way skin does when it is released from close fitting clothing. I reached down and started to scratch before it occurred to me that I was doing something I hadn't done in months. My legs were feeling itchy, actually FEELING itchy! My fingers, as they scratched the pattern left on my skin from my knitted wool socks, were feeling the bumps and indentations. I scratched and rubbed, enjoying this sign of sensation where there hasn't been any for a while. Come mosquito bite season, I may consider this an annoying milestone, last night, I enjoyed every second of it.