I started writing a very different post early Wednesday morning, after the kittens woke me up at 5 am. I actually felt as if I was thrumming with nervous energy. The kittens, of course, immediately fell back to sleep, enjoying the untroubled slumber of housecats.
Part of this is the shingles, which tried to return when my neutrophil count was low during this last round of chemo. I still felt a little twitchy, but the gabapentin seemed to help. From what I’ve been told, the low count makes me more susceptible not so much to outside germs, but to infections within and to bacterial infections. I’m on various medications to ward off the shingles and other infections that have tried to take hold and to manage some of the chemo side effects.
By Wednesday evening, though, when I tried to go to sleep, the twitching and cramping in my legs was so bad, I couldn’t go to sleep. Every time I would try to drift off, I would get a painful cramp in my foot, my big toe splaying out from the rest of my foot. I watched helplessly as the muscles in my foot pulsed, and some of my toes moved side to side. I hadn’t felt this terrible since November. I remained twitchy the next day, and Friday I woke up with tremors in my hands and a really sore tongue that was also twitchy. I saw the neurologist that day. He did his reflex tests and looked at the tremors in my hands. He reviewed my December MRIs and scans and confirmed that everything had looked normal, something that is very comforting.
However, it’s still a little bit of a mystery as to why this is happening again. I have been back to working out on a regular basis, but on Wednesday, I decided to do one of the more tougher workouts. (My ClassPass account is on hold, so I get one class per month.) By the end, my muscles were so fatigued, I felt a little wobbly. The doctor says that maybe that triggered something in the nervous system. Some of the medications I’m on, including the Zofran, also might trigger the tremors.
In the meantime, he increased my dose of gabapentin. If that still doesn’t work, they may try a medication used to treat Parkinson’s. I’m glad that my MRIs are clear but it’s frustrating not knowing what’s causing all the tremors, twitching and cramping. It seems to happen when I haven’t had much sleep, have been drinking a lot of coffee and have been stressed and that it could possibly be triggered by physical overexertion.
I feel a little sidelined again. I want so badly for things to be normal, and I continually have to remind myself that it’s going to be a new normal and I have to let go of the idea that things will be the way they were before the stem cell transplant or before the Whipple procedure or before this round of chemo. The rest of my life is most likely going to be doctor visits and symptoms and fighting off disease.
I have also been experiencing a bit of “chemo brain,” something that I have been lucky to avoid for the most part during previous treatments. I have a little bit of trouble focusing, and sometimes I can’t remember things. I’ll try to spell a word I’ve effortlessly used before and it will be one letter off—something that, as a writer, horrifies me. It takes me longer to recall recent events. I can’t remember what I did last Thursday.
There are a few bright spots. A few weeks ago, we went to a friend’s birthday party and to see a movie, and when I returned, I was pleasantly surprised to find a clean apartment. I’d momentarily forgotten that I’d cleaned that morning.
The extra dose of gabapentin makes me a little sleepier. Yet I still have a little trouble sleeping. I had a nightmare the other night that one side of my face was twitching, and I don’t know if that was just in my dream or if my face was actually twitching. I have half-asleep worrisome thoughts, wondering if, since my heart is a muscle, if that would twitch too. I did allow myself to ask the doctor one ridiculous question: Could I swallow my tongue, since it had been sore? The answer is no.
I’m still afraid to go to sleep every night, when it is worse. I get tiny bits of pain in my face and the bottoms of my feet. I can feel the night twitches as I prepare to take my gabapentin. When I sleep, I have weird dreams about dying. Last night, as I drifted off to sleep, I had an entire body twitch, as if I were a piece of popcorn popped into the air.
Overall, I’m a little disappointed that the twitchiness-pain-cramping combo is back, and that it feels worse. Mostly, I’m scared. I still feel as if I have only a few clues as to what could be triggering this and why it seems to be worse. I was feeling the beginnings of it before working out, but that seems to have exacerbated it. Friday’s blood tests appear to be, for the most part, pretty normal. Grappling with the unknown is always the scariest part.
I feel as if I’m losing hope. I am nostalgic even for times when I was depressed and in pain, like after the stem cell transplant, when I was jobless and adrift, and even after the Whipple, when I was in pain all the time and couldn’t eat. Then I feel like I had hope of things getting better, whereas now, I feel as if things are only going to get worse.
As for the cancer treatment, I start chemo again on Tuesday and am on it for two weeks, and then we have a short, four-day vacation planned. The idea was to get away between the chemo and the scan and the next steps to treat this. I hope I am still able to go. It would be nice to get away and relax for a few days before the next steps.