Sparklers and Marshmallows

They kept asking if I was feeling any numbness or tingling in my hands, legs, or feet. No, I’d say, but I did feel like there were marshmallows under my toes.
Apparently marshmallows was not a clinically defined symptom so neither the oncologist, or the primary care doc knew what to do with that.
Nonetheless, the marshmallows got larger day by day until they reached the size you’d want for a campfire recipe for s’mores.
“It’s not painful, these marshmallows under my toes,” I told them. Lack of pain to an allopath means that the symptom is likely more psychological than physiological. They again offered Ativan, an anxiety drug. But I wasn’t anxious about the marshmallows, just kind of fascinated.
Way back when I was doing research for my dissertation, I interviewed a woman who had a tree growing in her leg. While I couldn’t get her to be more descriptive about the sensations of that without suggesting my own languaging – and that’s a no-no in research -- I remembered the discussion we had about it. Homeopathy was the only thing that finally worked to eliminate the subjective feeling for whatever the biological cause was.
Maybe it was because of this woman’s story of odd sensory possibilities that I wasn’t particularly distressed about the marshmallows. After all, they are soft and cushiony, and my shoes still fit so what’s to worry about?
Weeks later the sparklers showed up in my feet. If you were born in the 21st century you might not know what sparklers are. Imagine incense sticks burning 100 times hotter than normal while spitting out fiery sparks in every direction, causing bad enough damage if touching your skin that you’d need to get to a hospital fast.
The sparklers fired at the tips of my toes and on the top of my feet at night. The sensation went beyond irritation. I couldn’t keep my legs still. A joint and muscle pain cream was minimally helpful, but the pain didn’t end, and didn’t even reduce for very long. The sparklers had a time frame, usually from about 10 pm to about 2 or 3 am. I was definitely sleepless in Seattle.
“Do you have tingling?” the palliative care person, an advanced registered nurse practitioner (ARNP), asked.
“No, I have sparklers. And marshmallows.” I was lucky. This ARNP had also once upon a time been an acupuncturist. She was able to translate my terminology into medical relevance.
“I think what you are feeling are your nerve endings firing. It’s a sign of neuropathy. I’ll give you gabapentin for it, but you might also look into acupuncture.”
Although I didn’t want more pharmaceuticals, I was desperate for sleep so I accepted the prescription. Then, remembering that I had been advised months before that peripheral neuropathy was sometimes a side effect of chemo, I consulted Dr. Google about how long after treatments it could show up. My last infusion had been in April, and this was late August.
Chemo-induced peripheral neuropathy (CIPN) can show up as much as a year after treatment, and can last for years, or be permanent. While I have a pretty high threshold for pain tolerance, this was serious. It was already somewhat debilitating, not just affecting my sleep but now causing worry that before too long it would hamper mobility, cause instability when walking, even make it dangerous for me to drive.
I started scouting for traditional Chinese acupuncture. I didn’t want “dry needling” that uses massage therapy trigger points instead of energy meridians. I didn’t want injection acupuncture that would put more drugs, vitamins, and who knows what into my body. Putting substances into the energy channels that work to balance the system seemed counterproductive to me at best, and way too much of an imposition of Western thinking on an Eastern medical practice. After learning how common were the types I didn’t want, I found three licensed acupuncturists (LAc) who did the traditional kind.
Interestingly, when considering the ancient Chinese body clock and the hours when the CIPN was the worst, I could see why the LAc needled me a lot in the gallbladder and liver points. Of course, I had metastases in the liver, so that made sense from that perspective as well. The gallbladder was a surprise. I hadn’t thought about mine since it had been removed more than 50 years ago. But, in Traditional Chinese Medicine, a missing organ doesn’t negate the existence or function of the meridian associated with it.
My Medicare Advantage plan would pay for 20 sessions, but like other alternative medicine modalities, not all practitioners take insurance. Or not my insurance. And, my plan, and others like it, will cover acupuncture for back pain but not for CIPN. Good thing I also had chronic back pain, right?
So yesterday, after about seven sessions, I noticed that the puffiness under my left foot has reduced to the size of mini-marshmallows like you’d want for cocoa. “Like lucky charms,” the LAc quipped. Well, not yet that small, but on the way. The right side ones feel larger that good for hot cocoa still.
Also, the sparklers now aren’t as hot, nor as wide spread, and they don’t last as long. So I’m sleeping better, longer, and tapering off the gabapentin. My hands, though, are still achy. So I’m trying something else. Will write about that later, if it works.