Neuropathy is a side effect of some cancer drugs, but what does it mean to have neuropathy?
In July 2011 Barbara Carlos was diagnosed with stage 3 breast cancer. A resident of Hawaii, she works in administrative support at a college and has retirement as her career goal. Music keeps her sane, as side effects of chemo and radiation linger. Overweight since childhood, she keeps trying to lose the estrogen-laden fat that her cancer loves.
I may have heard or seen the word “neuropathy” before I experienced it, but not much before. Like most of us, from the moment I received my cancer diagnosis, I was all over the web trying to figure out what was going on, what it meant, what to expect – well, you know how it is. In my many searches, I am sure the word popped up but not knowing what it meant either literally or figuratively I skipped over it. There was just so much more for me to click on so I kept clicking.
A day or so after my third chemo treatment, I noticed my feet and legs were swollen. I couldn’t help but notice since I couldn’t get my shoes on. As I explored the science experiment going on in my lower extremities, I realized that my legs were a bright shade of pink and also swollen. I explored a bit more and found there was numbness in my feet and legs. Hmmm, not good I thought, but maybe normal for chemo. I called the Oncology Clinic and they had me come in to have it checked out. I think that was when the word neuropathy entered my vocabulary.
Sometimes medical personnel assume you know what they’re talking about unless you say something to the contrary. I am good with that approach since I am not shy about asking questions until I am satisfied that I understand. However, there were times when I was overwhelmed with everything that cancer entails. Add in chemobrain and I left not fully comprehending neuropathy.
Back to the web. I looked it up and was able to read over and over what peripheral neuropathy was. OK, I got it. I understood the medical definition but there was nothing about what it meant to my daily life. The first real impact was with balance.
Walking is something we all take for granted. We learn to walk when we are about a year old. Once the task is mastered, there’s nothing to think about. You just get up and go. You stop. You turn or pivot. You climb up or down stairs. You even walk briskly or run if so inclined. It’s mindless. You don’t realize how much your brain relies on the messages the different parts of the body automatically send to it. My feet and my legs were no longer able to provide the feedback my brain needed to maintain my balance. Every step was a struggle to stay upright. Whenever possible I stayed close to a wall or furniture to have something to hold on to if I needed it. I couldn’t walk a straight line. And I started falling down. The falling part wasn’t too bad, but I didn’t like the landing part. I am not a small woman and I have never done anything gracefully. Once down, it was a chore to get up, especially since I couldn’t feel my legs or feet. I ended up with bumps, bruises and a sore body, but somehow never broke anything. It was suggested that I use a cane, or a walker, but I wouldn’t. Actually, I just couldn’t. Cancer had changed so much of my life and I wasn’t willing to let it change something as basic as walking. Even though I knew I wasn’t in control, I wanted to feel like I was in control.
Chemo continued as did the neuropathy. I next felt it (or rather didn’t feel it) in my hands. I have always been a touch typist and it was weird to put my fingers on the keyboard, hear the gentle clicking of the keys, see words magically appear on the screen, and not feel anything. I couldn’t pick up a paperclip without watching what I was doing because I couldn’t feel it at all. If I wanted to wear a blouse with buttons I had to allot 10 minutes to get the buttons done. I have pierced ears and always wear earrings since I can’t stand to hear the wind whistling through the holes (ha, ha) and already had an extra 10 minutes in my daily glamorization routine to put my earrings on. I would have to stop myself before reaching for something in the microwave because I couldn’t tell if it was warm or too hot to handle. Before chemo was completed, I had lost feeling in my entire body. Showers were an adventure as I tried to determine if the hot water was too hot.
Neuropathy does have advantages, though. Between chemo time and radiation time I was stung on the neck by a bee. I didn’t feel it. We saw the bee and then there was a large red swelling on my neck with a stinger protruding, but it didn’t hurt at all. As soon as my immune system recovered from chemo I went to the dentist to have my teeth cleaned and found I had a huge abscess. The dentist was astonished that I wasn’t aware of the problem but I didn’t feel anything going on in my mouth. What was perhaps the oddest thing was that my bladder stopped sending messages to my brain. A few times a day I’d have to think how long it had been since I had been to the bathroom and upon realizing it was six hours, two cups of coffee and a whole lot of water I would rush off. It’s really funny when you think about it.
I had accepted that I wasn’t ever going to physically feel anything again and I was fine with that. Nerve damage was clearly covered in the oral and written disclosures about my meds. Although surprised when it happened, I just thought of it as part of the price to pay in order to stay alive (hopefully). It took a long time for any feeling to come back. The first thing I noticed was the tile floor seeming slightly cool on my bare feet. I thought it was my imagination but over months the cool sensation increased. In the last two to three years, feeling has returned to other parts of my body, slowly and in spurts. I still don’t have the sensitivity I had before and that’s OK. Maybe as time goes by it will get better. If it doesn’t, that’s life.