Shingles, Pain, and Blood Cancer

The other day, I was walking down the street, choking back tears, stopping and starting and stopping again. I was trying to finish a text to my nurse practitioner at the Dana-Farber Cancer Institute. “I am soooo upset to the point of tears,” I wrote. “I actually feel worse now than when I had leukemia because I don’t see an end in in sight and then I have to deal with this stuff...Thinking that it (my shingles) isn’t going to go away, and worrying about this makes it worse.”

Needing relief from pain

This was the failure of the nurse practitioner at my local internist’s office to send in a prescription for oxycodone. I had asked her more than a week earlier, yet, after repeated calls to the office, she still hadn’t done it.

It was the only thing that took the edge off the pain in my right arm and shoulder, where I had had shingles six months earlier and now had a painful nerve condition called post-herpetic neuralgia (and itch). I was down to one five-milligram tablet. Later that day, I checked with CVS, and still no refill. “I called (the office) again,” I wrote. “I really can’t run out. Did I say I am upset to the point of tears?”

When you need opiods, but cannot get them

I, and others like me who need opioid painkillers, have a right to be upset when we have trouble filling our prescriptions due to overkill in response to the opioid overdose epidemic. In April, 2019, the Food and Drug Administration put out a safety alert, FDA identifies harm reported from sudden discontinuation of opioid pain medicines. It read in part, “The FDA has received reports of serious harm in patients who are physically dependent on opioid pain medicines suddenly having these medicines discontinued or the dose rapidly decreased.”¹

I wasn’t considering suicide like the alert said some do, yet I could understand the impulse. I had the “psychological distress” that the alert said many have, and I worried about the “serious withdrawal symptoms and uncontrolled pain” that might be my fate.

The opioid epidemic is a problem

Granted, the opioid overdose epidemic is a killer. According to the Centers for Disease Control, “The number of drug overdose deaths increased by nearly 30% from 2019 to 2020 and has quintupled since 1999. Nearly 75% of the 91,799 drug overdose deaths in 2020 involved an opioid.”²

The solution isn't to deprive people who genuinely need opioids

The crisis needs a solution. But it isn’t to deprive people like me who need opioids, in my case oxycodone.

Yet we are eyed with suspicion. Even my friends have asked, “Who is watching you?” As though I can’t be trusted. It always seems to be a hassle. The last time, the local prescriber wrote it wrong, so that I ran out early. “It says one to two tablets every four hours AS NEEDED,” the pharmacist scolded. “It’s not supposed to be taken around the clock.” I never took more than I was supposed to do, yet the piercing pain sometimes did call for a late-at-night dose.

I ran to my car and cried. My Dana-Farber nurse practitioner called and straightened it out.

When I've used opioids withour becoming adicted

I have had my share of oxycodone, without getting addicted, in the numerous instances since my 2003 leukemia diagnosis when Tylenol could not touch the pain. These included when:

• I had lung surgery (VATS, or video assisted thoracic surgery) in which doctors removed a fungal ball from my lung prior to my first stem cell transplant,
• A surgeon removed a scoop of my tongue when, during a dental extraction, the dentist noticed severely abnormal cells on the edge of my tongue, and,
• During extracorporeal photopheresis for graft vs. host of the skin, the needle would hit a nerve, a sensation so painful that only oxycodone relieved it.

My current prescription calls for two five-milligram tablets every four hours. I keep track on a pad of paper near my bed and on the dry erase board that my son got for the kitchen. I would have run out this last time if the same NP from Boston hadn’t picked up the ball.

“It’s a miracle!” I texted. “I won’t have to go to the hospital tonight after all.”

Being able to joke about it took the edge off, but I had been seriously worried. Stress is especially bad for shingles.³

It’s also bad for cancer survivors. “A new study suggests that stress hormones may wake up dormant cancer cells that remain in the body after treatment,” according to a 2021 National Cancer Institute report.⁴

It was bad enough to get shingles. It would be way worse if the stress over getting my medicine caused my leukemia to return. When the time comes, I trust that with help from my medical team, I will be able to wean. But that time isn’t now.