It was late on a Thursday afternoon in August 2013 and I was desperate to get my hands on more fentanyl and morphine.
I wasn't an addict. I was the caregiver to my first husband, Ahmad, who had significant pain from Stage IV bladder cancer. Running out of these narcotics would be torturous for both of us.
It had happened a couple times before. The excruciating pain would render him nearly in tears and unable to move. It would render me panicky. A rapidly growing tumor pressed on his spine and also compressed a vein to his right leg, causing it to stay chronically swollen. He suffered from severe back pain that overtook his mobility in a matter of weeks.
Our lives had shifted from enjoying carefree, chilly weekends in San Francisco, to grappling with a terminal cancer diagnosis in which the severe pain began so quickly, we scrambled for relief and solutions every day during the 11 months from diagnosis to death.
Running out of the narcotics meant he would lapse into a near-feverish, anguished state. Often speaking only in his native Farsi, a language I did not speak, he would ask me for help, using words I couldn't understand.
The news has been saturated with stories of opioid addictions and overdoses. Ours was a story of how challenging it was to access the essential pain relief in a timely fashion.
At many moments, I hoped that California's strict regulatory oversight of narcotics was at least keeping them out of the hands of drug dealers. Because it was certainly keeping them out of our hands.
Ahmad was on a fentanyl patch for long-acting pain relief. He also took liquid morphine as needed for "breakthrough" pain. A typical challenge in obtaining them went like this:
I would notice one drug or the other was running low. As on that Thursday in August, I would call the oncologist's office. They would tell me they could not fax or call it in to the pharmacy. I would have to come to the doctor's office and pick up a hard-copy prescription. Or they could mail it to me. We didn't have time for the mail.
So I would figure out a way to leave Ahmad alone for the couple of hours it would take to get the prescription and fill it. This always worried me because if he was asleep, I did not want him to wake up groggy and in pain, needing help and not knowing where I was.
After picking up the prescription, I would call the Walgreen's nearest us to confirm it was in stock.
"I'm sorry, we can't tell you that," the friendly young woman with sandy blond hair, whom I'd met many times on prior visits, told me on the phone.
"But my husband is very sick with cancer and in pain and I just want to get home as soon as possible," I explained. "I have filled these prescriptions with you before. You know me. I can tell you everything written on the prescription."
"I'm sorry but you have to bring the prescription to us so we can see it," she explained.
After presenting the required prescription to the pharmacist, he would tell me that they were out of morphine. And that they did have a fentanyl patch but it was a different dose than the one we needed.
"Would you like me to call another location for you?" he asked. "The Castro store usually has them both."
The Castro neighborhood was Ground Zero of the AIDS crisis many years ago and the Walgreen's there is a 24-hour store. However, it was across town, it was rush hour and even in less traffic, it would take me at least 30 minutes to get there. And more time to park if the tiny parking lot was full, which it often was. But what were my options?
Under normal circumstances, none of this would have been much of an obstacle. But in the trenches of Stage IV cancer, a patient and his family's world narrows to managing pain and staying alive. And leaving Ahmad alone with the grogginess that narcotics cause always worried me.
I understand the need for strict oversight of opioids, given the crisis the country is facing. But as I drove around town, I often wondered whether it could somehow be easier for those who need these drugs for cancer pain.
Renata Khoshroo Louwers is a writer and a bladder cancer patient advocate with the Bladder Cancer Advocacy Network and the Research Advocacy Network. She lives with her new husband, Tim Louwers, in Virginia's Shenandoah Valley and San Francisco. This guest column appears on Diagnosis: Cancer through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for over 800,000 patients and caregivers.
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