Tag Archives: friends

Thank You, Montana

Shelly & Karen. August 2016
Shelly & Karen. August 2016

Thank you, Montana, for passing I-182. Thank you for your compassion for my friend Shelly and for the thousands of other Montanans who lost their medical marijuana providers in August. Three days before the election, a woman complimented my “VOTE” button as we waited in line at the Roxy Theater concession counter. “Vote for medical marijuana,” she said.

“I already did,” I replied. “I wrote letters to the editor, too.”

She said she hoped she had read them.

“They were about my friend in hospice care,” I said. “She uses fentanyl patches, but she needs medical marijuana too.”

“My son’s on fentanyl,” she said. She told me he has Crohn’s Disease. He can eat when he uses marijuana but without it, food is a challenge.

“We already passed it,” her friend said. We expressed our collective frustration with the legislative rollback and shared our optimism that Montanans would vote to legalize medical marijuana. Again.

We did. So did Arkansas, Florida, and North Dakota. California, Massachusetts, Nevada, and Maine voted to legalize recreational use for adults twenty-one and older. Though speculation reigns about how a Trump administration will impact the marijuana industry, I believe that legislation will be left up to the states. For Shelly, and for all who need medical marijuana, I don’t want to believe anything less.

We Need Medical Marijuana

My friend Shelly changes her fentanyl patches every two days. It used to be a single patch every three days. Now it’s two patches every other—for a combined 62.5 mcg.  Her story is written between the lines in a Washington Post article that states, “The Centers for Disease Control and Prevention warned doctors in the spring against prescribing opioids with benzodiazepines, except for patients battling diseases such as cancer.” Like Shell.

Diagnosed one year ago with a pancreatic neuroendocrine tumor, Shelly’s in a club she never asked to join. Cancer her entry ticket, she can fill her prescriptions without question. But when she uses morphine and Dilaudid and lorazepam for breakthrough pain and anxiety, “All I can do is sleep,” she says. “That’s not living.”

Her medical marijuana card used to offer an alternative. “Mentally, physically, spiritually, psychologically . . . with the pot, I am living.” Though Shell has been receiving in-home hospice care since spring, she’s been able to make memories with her family: taking road trips to Yellowstone National Park and to Colorado; going camping; canning peaches; and enjoying movie nights, family dinners, and an outing to MontanaFair.

Montana voters approved an initiative to legalize medical marijuana in 2004. In 2011, the Montana Legislature passed SB 423 to repeal the 2004 Montana Marijuana Act and replace it with new regulations. Appeals and court hearings followed, but ultimately the Montana Supreme Court ruled that the law to limit providers to only three patients would go into effect August 31, 2016—the day before Shelly’s fifty-ninth birthday.

Shelly & Karen August 2016
Shelly Hert and Karen Buley 2016

Unable to afford to stay in business, her providers were forced to close their doors. I met them in early August when I took Shell to the pot shop. I was impressed with their professionalism, knowledge, concern for Shelly, and array of products. Her providers applauded testing, taxation, and regulations, but were frustrated with Montana’s forthcoming legislation to limit access. Since 2004, registered medical marijuana Montanans have been treated for cancer, chronic pain, multiple sclerosis, Crohn’s disease, epilepsy, and more. But when the law changed on August 31, Shell and 11, 849 other registered cardholders lost their providers.

Pharmaceutical billionaire John Kapoor described his late wife’s cancer struggles in a recent Forbes article:  “I saw what she had to go through, and I can tell you, pain is such a misunderstood thing for cancer patients.” Following her death he developed Subsys, a fentanyl spray for under the tongue administration to provide rapid relief for breakthrough cancer pain.

But in 2014 the NYT described off-label Subsys use, higher sales rep commissions for selling higher doses, and company plans to seek approval for broader use. The article quoted Dr. Lewis S. Nelson, a medical toxicologist at the New York University School of Medicine: “If you’re waiting to die, you should die in comfort and dignity. It’s very different than if you’re attempting to have a functional life, because these drugs are relatively incompatible with having a functional life.”

Shell is receiving hospice care, but she is not waiting to die. She recently danced at her daughter’s wedding, and is looking forward to another family celebration in the coming days. She had stocked up on enough pot “to last through September” but now it’s October and she doesn’t have a provider.

I talked to her two days ago. She sounded rough. She asked if we could talk the following day; she had a call in to her hospice nurse to increase her fentanyl patches. She didn’t want to load up on morphine or Dilaudid—they exacerbate her opioid induced constipation (OIC), despite stool softeners and Milk of Magnesia. She’d been rationing her marijuana lozenges because she didn’t want to run out. Montanans voted in 2004 for more humane treatment.

We will get the opportunity again this November with I-182, a ballot initiative that would, among other things, repeal the three-patient limit. Eight other states will vote on marijuana initiatives this fall: three on medical marijuana; five on recreational use. Twenty-five states (including Montana), the District of Columbia, Guam, and Puerto Rico have passed marijuana legislation.

A 2015 Gallup poll found that 58% of Americans support legal marijuana. A study by economist Darin F. Ullman reported that medical-related absenteeism declined after the legalization of medical marijuana, and, according to CBS News, “it estimated that the overall impact of the legal marijuana industry on the U.S. economy for 2016 would be as much as $17.2 billion.” Cannabis remains illegal under federal law, though the DEA acknowledges, “No death from overdose of marijuana has been reported.”

Not so for opioids. In 2014, there were more than 14,000 U. S. deaths involving prescription opioids. Articles pepper the news about our nation’s opioid epidemic and its devastating societal and economic effects, and Forbes tells us that even though the FDA approves Subsys solely for cancer patients, its continued off-label use has resulted in antikickback statute violations and an accidental death.

Shell called yesterday after sending this email:

Email from Shell 10/7/16

Shelly needs her fentanyl patches, but she also needs medical marijuana. If you live in a state that will be voting on a marijuana initiative this November, I urge you to please vote FOR legalization. Legalize. Regulate. Test. Tax. Enable Shelly, and others like her, to live the functional lives they deserve.

Detours

My appendix ruptured three hundred fifty miles from home. That was not the plan. The plan was to spend two nights with my dear friend Shelly. Catch up. Reminisce. Write her obituary. On the cusp of her fifty-ninth birthday, Shell’s receiving in-home hospice care for a pancreatic neuroendocrine tumor.

Midnight before we said “goodnight,” we spent nine glorious hours looking at photo albums, talking, laughing, and crying. My pain started soon after. I searched “appendicitis”  and “acupressure abdominal pain” on my phone, grateful my pain was low and midline, not the right lower quadrant pain with rebound tenderness I remembered from my nursing school days and February of my boys’ eighth grade years—when appendicitis struck twice.

I worked the acupressure points on my shins and belly to no avail. The vomiting started at two-thirty. Shelly’s daughter Michelle drove me to an urgent care center that morning. “Food poisoning,” the doctor diagnosed. He said my pain wasn’t in the triangular area suspect for appendicitis, but if my symptoms got worse I could return for blood work and a scan. “How does that sound?” he asked.

“Sounds good,” I said.

My cousin Theresa picked me up. I waited in the car while she filled my prescription and bought ginger ale and sports drinks, then I took a dissolvable anti-nausea tablet en route to Shell’s to get my things. A hurried goodbye followed with a promise to return.

Seven hours later I was in the emergency room—at a different facility than that morning. Hours after Theresa delivered me to her home, her twenty-one-year-old son broke his pelvis in a motocross accident. He was in ER with his dad, awaiting admission. Theresa came home to pack an overnight bag and shuttle me to an ER. Made sense to go where she would be spending the night: between ICU, my room, and a waiting room as it turned out.

Ruptured appendix” was the diagnosis twenty-two hours after my pain began. I asked the surgeon if she thought it ruptured when I vomited in the ER waiting room and my pain shot from 7 to 10. To 15, had that been an option on the pain scale. She said appendixes often rupture at the onset in adults. Said too that adults’ pain can start midline and then migrate to the right. My pain was low, not around the navel like I’d read online. She said she’d try to remove my appendix laparoscopically but might have to open me up. I said I hoped she wouldn’t have to.

She didn’t. Rich bused over and drove me home thirty-seven hours after surgery. My drain came out two days later. That night I was again an ER admit, this time with vomiting, chills, and fever. “High-grade bowel obstruction and two pelvic abscesses” were my diagnoses: a ticket to a nasogastric tube, a laparotomy, and a weeklong hospital stay. Four times in five days I had to present my insurance card, grateful at each point for the Affordable Care Act and our insurance plan through Montana’s health insurance exchange.

Sunrise from St. Patrick Hospital room 513. May 2016
Sunrise from St. Patrick Hospital room 513
Mount Jumbo and Mount Sentinel from hospital window
Room with a view: Mount Jumbo and Mount Sentinel from 513

Would my outcome have been different had the urgent care doctor ordered blood work and a scan? Maybe. Had the first surgeon opened me up? Perhaps. “Probably” says my nurse friend Marj. In hindsight, both might have been better options but at the time, I was relieved by each assessment. Throughout my two hospitalizations and recovery periods, thoughts of Shelly—her courage, strength, and grace—put my journey into perspective. My surgeries were detours—the saddest part being I didn’t get to say “goodbye and good luck” to graduating seniors—but they paled compared to Shelly’s pancreatic cancer. To Matt’s broken pelvis. He’s recovering well from trauma surgery, but the abrupt ending to his motocross career was hard.

I know life is unpredictable. And every day’s a gift. So I changed my oil, filled my gas tank, and took another road trip. Shell and I had some writing to do.

Shelly & Karen. August 2016
Shelly & Karen. August 2016