My Cancer Journey 2/28

Ned Henry February 28, 2021 ·

So dealing with Cancer and maybe even beating it, is one thing. But this neuropathy is a whole new ballgame. Whether it is caused by the Vincristine in the chemo regimen or the chemo regimen just caused a flare up of the mild stenosis I know I have in my lumbar spine, doesn’t really matter. The effects are the same There are 2 distinct things going on with my feet and the left foot is much more pronounced than the right foot. The first is the coldness and numbness that I feel mostly on the bottom of the feet. This is caused by the nerves not firing so that I can feel normally. I can’t feel my toes to help me balance so I am unsure on my feet. The doctor on Friday told me there is no medical treatment to get those nerves to wake up. That doesn’t mean that there is nothing I can do but whatever course I take will take time. Acupuncture is something that I will try and the compound cream they gave me does seem to cause more pain in my foot but I am looking at that almost as a good sign that the nerves might be waking up. The second neurological issue is the pain and tightening that I feel mostly on top of the left foot. I do not feel this on the right foot. This is what keeps me up at night when I am trying to sleep. That issue is treated with the pharmacology treatment they are giving me with Lyrica. At least that is my understanding. That Lyrica will eventually cause these nerves that are firing too much to calm down. Now whether that will then also inhibit the nerves I want to wake up to get over the coldness and numbness, I will have to wait and see. The neuropathy is complicated. I will also get back to PT as soon as next week (hopefully) and see PT specialists for neuropathy. I spent most of yesterday and today just trying to move my toes on my left foot. I am able to get some very small movement out of the big toe but nothing out of the other toes. And my feet remain cold. So even though I might be beating the cancer, the prospect of not being able to walk normally again is a depressing one. I am not that old. 70. And a pretty young 70 since I have been active most of my life. I may not be able to ski again in this lifetime (we’ll see) but I want to travel again in Europe and I want to play golf again and be active and swim again and work out again. I am not ready to resign myself to being “permanently disabled.” And that is what the oncologist said about continuing with the Vincristine. I will know more about how the chemo is working without the Vincristine at the next PET CT scan next week. The Physical medicine doctor who specializes in cancer chemo side effects, said that we will work with it for a year. His words were that if in a year I can’t get better, then it will likely be a permanent disability – not encouraging but honest. But he also said we are only at the very beginning of that year and that some people are able to restore normal nerve function after this kind of neuropathy caused by Vincristine. So I will work the program and do my best to keep my mind from going to those dark and hopeless places where I end up on crutches for the time I have left on earth. I go there sometimes. I am weak sometimes and just want to feel sorry for myself. I have to remember how my cousin Johnny never seemed to go to those places as he wasted away with ALS. Most of the time, I know better. And I have my tools. I’ve learned lots of them over the course of my life. So I keep fighting. But the new battle may become My Neuropathy Journey if I get the all clear for cancer after 6 chemo treatments. Right now it’s both battles. So even though I have some positive indications about the cancer, I am hardly out of the woods yet. I do think I will have a long battle with the neuropathy. I have been through years and years of PT after my orthopedic surgeries — all 4 of them — and that work is grueling and requires daily work at home. I’m sure this new kind of PT will be the same. Lots of hard work ahead. The good news in all this is that I know that there are so many of you pulling for me to get through this so we can get together and do fun things again. And you know Covid makes this whole process so much more complicated since I can’t even get close to you these days. I will get my second vaccine shot next Tuesday and that will give me some protection but I will have to be careful about it probably for the rest of my life as a cancer survivor if I’m lucky enough to be counted in that group. Mt goal though, is to beat the cancer with the chemo and then to get normal function back in my feet and then to start to get strong again. Right now, I don’t feel very strong. I am fatigued from the chemo and the problems with getting enough sleep. So those are my thoughts as we end the month of February. It got up to 77 today here in Atlanta and I had a long visit on my deck with Pete, who brought me my now weekly gourmet meals. I must say, many people may lose weight during chemo but that is not the case with me. I am not losing weight but I am also not gaining weight. And I am eating very well with the meals people bring me whether from a restaurant or from their own kitchens. And the weather is getting warmer and after another month we will definitely be past any freezing temperatures overnight and should see some nice warm Spring days. Adn Atlanta explodes in color in springtime. The dogwoods and azaleas bloom all over town and in my yard and the wisteria that shades my deck in the summer comes out with pruple flowers for about 2 weeks. All that will happen in the next 6 weeks or so. And I want to be strong enough to go for some walks this spring and see the wildflowers— even short walks — on some of the nature trails around here. So I’ll sign off for now. Next week will be a busy one. Covid shot on Tuesday, PET CT on Wednesday and Chemo #4 on Friday.

It does look like I will lose my tutoring gig with refugee kids. They don’t have a new student for me to work with right now. I’m bummed about that. I thought Yunus are I were making good progress but he just didn’t want to continue and got himself kicked out of the program by not showing up for his sessions. I wonder if the IRC is doing English tutoring over zoom these days. I spent a few years teaching English with them to refugees but that ended with Covid. I think the volunteering helps me probably more than it helps the people I work with although I know it helps them too. I miss it. It’s a big hole in my calendar. Oh Iowa beat Ohio State today in basketball. Big game. Big win. Look out for the Hawkeyes. (My brother Jack went to Iowa so I pulled for them even though my niece Rosie went to Ohio State.) See ya next time.

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