Opioid Stigma and the Cancer Patient

I walked into my pharmacy and handed my prescriptions across the counter. The young man at the computer began typing them in dutifully, then raised an eyebrow and stepped away from the counter. I watched as he consulted with an associate, their tones hushed. She went to another computer in the back and began typing while he returned to his station at the counter.

"We'll have the anti-nausea medication ready in about forty-five minutes," he said. "As soon as the pharmacist is back from lunch."

Okay, I thought, I can work with that. I nodded my understanding.

He continued: "I'll have to check on the other one. It's a C-2 drug."

Dealing with pain during an 'opioid epidemic'

I had heard the term before. In fact, my oncologist had warned me. Drugs are regulated according to "schedules" or classifications of how dangerous they may be, and when they might be considered illegal for use. C-2 drugs are legally available for medical use but are treated seriously because of their potential for abuse. Media reports about the "opioid epidemic" leading to hundreds of deaths across the United States, not all due to legally prescribed medication, have conflated addiction and abusive drug use with the legitimate and often necessary use of opioid painkillers.

When latest my prescription for 2 mg of hydromorphone was written up by a pain specialist, we tried to figure in the minimum amount I would need and back it into a reasonable range of dosing. Ultimately the label was to read "one tablet by mouth every four hours as needed," even though I might be taking two tablets every two hours on a rough night. We looked at the reality of my need and why I was taking the medication before deciding how to word the label because we were concerned that the pharmacist or the insurance company might otherwise halt the prescription and make it harder for me to get the medication that I need.

In search of pain relief

I have a tumor pressing on the sciatic nerve in my lower back. The level of pain that it causes is very hard to describe and it had been slowly building while I was waiting to get a diagnosis on its cause. My stage IV adenocarcinoma had spread from my lung to the bones in my spine and, while the progression of disease had long been under control through chemotherapy, the tumor in my lower spine remained active. Recently, an offshoot from that metastasis spread into a muscle just behind my pelvis. As it grew, I began experiencing pain along my left leg. Eventually, I had an MRI to see if I had a problem with a disc or any other treatable issue. Shortly after that, I began getting rounds of radiation to destroy the offending tumor. The radiation is working and I know that soon the source of my pain will be gone. But "soon" is not "now." And for now, lying down is a source of excruciating pain. This makes it impossible to sleep without the use of a sufficient painkiller.

Later that day when I picked up my anti-nausea drug, I was told that the pharmacist would need to place a special order for my hydromorphone. I anticipated that and had made sure that I still had enough for the weekend. The pharmacy even sent me a text message that it would be ready on Sunday, so when I arrived on Monday to pick it up, I was unprepared for the rejection.

Facing another night of excruciating pain

"It won't be in until tomorrow," the pharmacist told me. "I just placed the order this morning." That threw me. I know that she could see it in my eyes, though: the panic set in momentarily, my eyes, normally so dry from my treatment that they feel like paper, were wet and ready to overflow. I took a deep breath and tried to steady myself, knowing that I could not handle another night of that kind of pain. I had to do a quick inventory in my head, count the pills I had left, figure out whether I could ration them for one more night...

She made some excuse about the order being sent to her too late in the day on Friday, which I corrected: "I brought it in myself, but you had left for lunch." I did not feel the need to mention that they sent me a text promising it would be ready on Sunday. At least she promised it would be ready on Tuesday and she would try to make sure it was filled "first thing." If I had known any of this, I would have gone to a different pharmacy on Friday and simply had it filled. But I could tell what was at play here. There was no urgency because this drug is barely legal. I look healthy. They cannot see how much I need it just to close my eyes at night.

Yet another stigma?

For me, this is a temporary issue. My pain, though still intense, is subsiding rapidly because of the radiation treatments I am receiving. By the end of next week, the offending metastasis will be gone and, hopefully, the nerve will go back to normal transmission. Because we are also targeting the active cancer in my lower-spine, there is little chance of a recurrence in that area. Not all cancer patients are so lucky; for many, their tumors wrap around nerves in places that are not easily treatable, leading to constant pain that can only be treated with drugs that come with their own stigma. As if the stigma of lung cancer wasn't already enough.

Editor’s Note: We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed.