Neuropathy is a side effect of many cancering drugs. It can have long lasting, and even permanent impact. Balancing effectiveness with neurotoxic side effects is the job of the oncologist. I for one would not want to be in the driver’s seat for that one. Especially with a rubric where weight and age are the primary measurements for dosage. One also has to wonder how many of the studies about setting dosage were carried out on women vs only on men? It would be unusual as most drug studies for the last hundred years have used only men.
With what I learned first hand about the variability of the liver’s capacity to process toxins from person to person the method of setting dosage seems a bit archaic. For more about how standard doses effected me, you can look back on my 2014 post about my response to steroids. I also have fond memories about the code blue that was declared when I reacted “strongly” to the anesthesia for my port placement procedure – I got a bonus extra 24 hours in the hospital for that one…
Bottom line, cancer drugs are very strong, and they are essentially stronger in some bodies than others because of our individual physiology. We humans do not come standard issue, and setting dosage is a dicey business. They say that which does not kill you makes you strong. In my case it just made me dumb-er and numb-er.
The thing about diving back into art making is that it brings to light how much residual neuropathy I have in my hands. Doing familiar tasks in my studio has brought me face to face with how much sensation is gone, and how much I once relied on my fingertips for information.
At this point more than three years after the last infusion of the neurotoxins Carboplatin and Taxotere, I can not readily tell the difference between say an acrylic sweater and a cashmere one by feel. It is worth noting that touching acrylic was once so unpleasant that it border on the hee-bee-gee-bees. I know very Princess and the Pea of me. My dexterity is mostly pretty good, in general the lack of fingertip sensation is more bothersome than debilitating. The bonus is that my feet, which are also effected, are not ticklish.
I know from my work at the clinic that neuropathy from diabetes can lead to devastating things. Things such as amputation can happen when a wound goes untended without the pain feed back loop to encourage care. What I have, is not that. Also my dexterity is intact for the most part. During the worst of it back in the midst of cancering treatment land I could not button a shirt, pick up an egg, or fill a water glass. Which is to say I have made vast improvements. For some the neuropathy is painful, or not feeling you feet fully can lead to dangerous falls for fragile folk. I am grateful it is not worse.
The irony of being considered “too sensitive” for my whole life, only to have my senses dulled is not lost on me. Perhaps my childhood wishes to be more like others were simply delayed in coming true. Be careful what you wish for people.
Today we traveled to Portland to visit Hai Shan clinic for an update on the Chinese herbal formula that I drink twice a day, and also to get acupuncture. I am happy to report that for the most part I am doing very well. Enough so that my acupuncture visit was able to focus on my beleaguered right trapezius muscle and the neuropathy of my hands and feet. This is the first time that we have addressed the neuropathy and my muscle situation. This morning I tweaked my neck while reaching for something above my head which inspired me to mention it to the acupuncturist at Hai Shan. Her attention helped a lot. Thank you body! Without the tweak I would have missed out on an awesome treatment. Going to Hai Shan is like traveling to Rivendell. Seriously elven folk there.
Since the departure in April of the therapist in Astoria I was seeing monthly for lymph draining massage and work on my right trapezius to maintain range of movement post mastectomy I have been feeling a bit bereft. It was nice to receive a bit of nurturing attention for my body in that way today. It is a bit of a kick in the pants to encourage me to set something up to replace my appointments with the lovely Jan Miller, super therapist.
All of this is a reminder that we all need different things to care for our bodies. Also that our bodies are profoundly changed by treatments – moving on with life brings to light the sometimes surprising differences between old pre-cancer self and new self. Noticing is not whining. Noticing is sometimes just noticing.
Whining is what I do in thrift stores when my hand automatically reaches out with the fiber artist hand shake to gage the content of some enticing garment, only to receive no useful information and need to resort to looking for the tag. As someone who for years has seam ripped all of the tags out of all my clothes, I can’t help but think that perhaps this is all some creative joke of the universe that necessitates relying on tags now. (Tags after all are so scratchy- so far no noticeable neuropathy on the back of my neck, so I still cut out tags. Further proof that I can still be too sensitive.)
Back to noticing – I am noticing that my arm has been doing pretty well swelling wise – though I fear saying so as it is likely to be over 90°F this week. The body does continue to heal and change. I am noticing that many of the side effects I attributed to Tamoxifen are thankfully gone from my life now. I am feeling creative and enthusiastic about making things these days. I mostly feel happy.
Right now I am holding on to some hope that the neuropathy will continue to improve. That some day I will be able to detect the subtle differences between fabrics. That I once again will experience the sensuous pleasures of just how soft my cat is – or of touching a thrift store cashmere sweater. That day is not here yet, but each time I reach out to touch something it is proof of the body memory that supports the notion that there is hope.
They say it takes a long time for nerves to heal, this situation calls for patience.
I am curious how others out there are doing. Are there any residual effects of treatments that make themselves known for you? How many things are daily realities that are swept under the rug for fear of whining? As some people are living longer post treatments, are there quality of life concerns that go unaddressed? Could things be done to improve treatments that will minimize the collateral damage of long term side effects for future patients? What can be learned from us to help others if we speak up?
As we say goodby to glorious July and move into the week of Lughnasa may your joys out number your woes.
P.S. I will be writing a report on the awesome class I took up in Coupeville on the Dream Bird Studio blog later this week…
6 Comments Add yours
I too suffer from neuropathy. Only feet and right now, toes and bottom of feet slightly. One foot is much worse than other, due to surgery. Which after two plus years I would have thought recovery would at least started. I am not diabetic. To me it is very bothersome, but does not stop me from doing things. I went with traditional therapy and the med they gave me was closest thing to rat poison. The topical they gave me caused rash, so everything went out the door. Right now just trying to find another solution. Seems to be a lot of claim to healings but I have not decided on my next path.
They used to think nerves could not really regenerate after being cut or injured- from surgery, accidents or things like stroke. That was wrong. Newer research shows that they do heal, apparently slowly.
Shawn, I am so sorry to hear about your foot neuropathy, and I hope that it does improve. I’m glad you didn’t take the rat poison. I’ll let you know if the acupuncture seems to do anything. Though I find acupuncture super relaxing to the point of usually falling asleep on the table…. I’m curious about what else you have learned about what may help. Miracle snake oil aside.
I need to do some research on what is supposed to help. I have a vague memory of seeing a documentary about research into helping paraplegics. I am wondering what nutrients the body needs for nerve growth. Probably could also make a person smarter too, who knows.
The numbness around my surgery site where nerves were cut also ran down the inside of my arm. I just noticed recently that it is still changing. It feels less dead now somehow. In the last six months I’ve had some tweaks of pain, little fleeting flashes in that area and also itching, which is annoying since it can’t be relieved by scratching – still too numb. One of the doctors said the flashes and the itchy feelings may both be signs of nerve regrowth. This is three years out- so again who knows.
P.S. Do you remember the glow in the dark stump we found while camping? You all were high school age and I was still a kid. We found a bioluminescent stump last summer while camping at Olympic National Park and it made me think of you. Also my boys are getting super tall so our shared genetics are showing. I’m back to being the shortest person in the house. Love to your family.
I just finished ACT chemotherapy a couple of weeks ago. I have numbness in four fingertips, and I have some issues underneath my toes, but I am not sure if it is due to chemo because I had that before. But one oncologist told me if it started to feel like I was walking in sand to let them know, because adjusting the dosage down even 10 percent could relieve a lot of neuropathy, and that it was important because it was one side effect that you can’t count on subsiding after treatment is over. I kept feeling concern over this, as I felt the mild neuropathy symptoms: what is worse, this or cancer? I have stage 3C lobular breast cancer, and I have two friends who died of this disease between years five and ten, whose initial staging was less than mine, so I take this illness and its treatment very seriously.
I also have a lot of numbness left from my mastectomy in January. It only bothers me when I get an itch, because for some reason numb areas can feel the itch, but they can’t feel the scratch. But I credit it with making my post-surgical recovery much easier. I will jokingly instruct my surgeon to please sever some nerves when I get reconstruction next year.
I know you probably didn’t mean it that way, but as I was reading and responding to your blog, and particularly the title: the numbing down of canceling folk, what I felt was the numbing of my emotions, and it was kind of terrifying actually, as I got just a fleeting glimpse of the untended wounds I was hiding there.
I use doTERRA essential oils, and although I am not supposed to claim such things, I read somewhere that helichrysum was good for nerve problems. I made a roller with helichrysum and fractionated coconut oil, and when the nerve problems get really bad I put some on. It isn’t curing it as far as I can tell, but it does provide some relief from the discomfort.
Thanks for your words. I wish you well as you recover from your treatments. I do feel that the numbing is more than just my hands and feet. While it was happening I swear I could feel my brain withering. The title of this post, which refers to Cancering is connected to the notion that cancer is a verb, not a noun. There is a page with more about that. It is a concept that continues to help me, and definitely was life changing during the first year after diagnosis. Essential oils are from plants – and plants rock the healing in so many ways. Ive only really used essential oils in salves and things, like home made deodorant which I am hoping assists my clearcut lymphatic system… I do need to look into those more.
Warm regards from across the blogosphere-
I’m going to pay more attention to what my finger tips tell me, having taken this for granted all my life. Sitting here in my living room touching clothing to my lips and cheek to see if it’s the same. My lips are close to finger tip feel but I suppose that would be weird in public to gauge fabric this way. Ha! Your posts always make me think and ponder. Thank you. ❤️