Tag Archives: friends

I grieve my father. I grieve his beloved country more.

March 25, 2017FathersButte, Colin Powell, election, family, fathers, friends, goodbyes, grief, hospice, legislation, Montana, mothers, mottos, nurses, Obama, Senators, veteransKaren Buley

My eighty-nine-year-old father died on January 5, five days after breaking his hip. He was scheduled for surgery January 3–delayed until his body cleared blood thinners—but worsening congestive heart failure declared itself early that morning. “I’ve had a good life,” Dad said, voice breaking after hearing that his body couldn’t tolerate surgery, that we’d keep him comfortable until his reunion with an army of family and friends in heaven.

My mom and I ordered his breakfast, our thoughts shifted from hoping he would make it through surgery without complications to anticipating the logistics of in-home hospice care. When the first of my siblings arrived, Dad told her, “When the going gets tough, the tough get going.”

Inducted into the Butte Sports Hall of Fame in 2009 for his teenaged boxing prowess, we didn’t know whether those were fighting words or a reference to heaven. Fighting words, it turned out, when he mentioned his caregiver soon after: “Maria’s going to have a job.”

Dan Antonietti. A fighter until the end. — My dad, Dan Antonietti, wearing his favorite WW II Veteran cap.

The hospitalist switched him to oral morphine, which relieved Dad’s pain without the sedation of IV Dialudid. He had a glorious day: visiting with Mom and six of their eight children, talking and singing on the phone to grandchildren, and visiting with Maria.

A champion of veterans’ rights, he had planned to testify on their behalf twenty-three times at the Montana legislature this session. Now, instead of Mom being chauffeur and copilot as he navigated the Capitol halls with his walker, Dad dictated testimony from his hospital bed for her pinch-hitter appearance. He talked so fast, it took two of us to take notes.

“Madam Chair and all members of the State Senate Veterans’ Affairs Committee:

For the record, my name is Catherine Antonietti, wife of Dan Antonietti, who is in the hospital and unable to attend this legislative session. He is a member of Post 1448 in Butte, Montana, which is a mile high and a mile deep and all the people are on the level.”

He grinned, then continued in his own words.

“I was the Legislative Chairman of the Veterans of Foreign Wars at the state and national levels. I voted yes for all legislative bills for the last sixteen years and I continue to cast my vote for every veteran’s bill held in this legislature. I’m glad to see you all back. Thank you, Madam Chair. You’ve all been a big help and I am proud of all of you.”

I fought back tears at his tender words, thinking how proud I was of him. Laughter followed when he said he wanted a beer, then asked for ice cream instead. We told him he could have both. “Just ice cream,” he said. “The kind I like.”

Two sisters went on a grocery run, returning with a half-gallon of ‘Mocha Me Hoppy’ and beer—just in case. Dad had three servings of ice cream that afternoon and evening. He had a couple of bites the next morning, which turned out to be his final meal. He began a steady decline, transitioning from oral morphine to a continuous IV infusion by the time the hospice nurse and social worker arrived for a family consult the following morning.

They asked if we wanted to go to a conference room. Dad hadn’t talked or opened his eyes since the previous evening, but they reminded us hearing was the last to go. We said we wanted to stay.

The nurse listened to his heart and lungs, then said it might only be hours before he passed. She talked about end-of-life care and offered condolences. The social worker did too, lingering to take contact information for bereavement follow-up—offering thirteen months for any or all.

She suggested one-on-one goodbyes with Dad and, after she left, we exited the room so Mom could go first. All eight of us and one brother-in-law followed. Dad’s brow wrinkled in concentration. He didn’t open his eyes, but he moaned and moved his lips. I felt his words in my heart. He died peacefully eleven hours later.

As we reconvened the following morning to discuss funeral plans, Vice President Biden and Congress met to formally count electoral votes. That morning I read factual news, not fake, about fifty-plus ineligible Republican electors—ineligible because they didn’t live in their Congressional Districts, or because as elected officials, they were barred from being “dual office-holders.”

Days earlier, I had contacted numerous senators and representatives, urging them to object to electoral votes because of voter suppression, Russian interference, and because electors’ requests for a briefing on foreign interference had been denied. That morning, I called Montana’s three Members of Congress again, pressing for objections based on this new information.

I felt joyful driving to the mortuary. I imagined Dad and his fellow warriors working the Democratic Caucuses from above, particularly Senator Tester who had known and respected him for his veterans’ advocacy. I sang en route:

Papa Dan, you are the man, you’re up in heaven to take a stand to help change the history of our country. The country you loved and fought hard for, Donald Trump will be no more president-elect of this, our great country. Hallelujah, Hallelujah. Hallelujah, Hallelujah.

I knew my chorus of angels might be hypothetical, but I believed the Democrats would fight for justice. Constituents had urged objections for weeks. President Obama had imposed Russian sanctions. Fifty ineligible electors tipped the scale.

I checked my phone when we broke to look at caskets, certain that Colin Powell’s three electoral votes would multiply and he would be elected President. Premature I knew, because objections, debates, and subsequent votes would take time, but I checked again before we segued to our meeting at the cathedral.

An hour later, I read the devastating truth in a grocery store parking lot: not a single senator objected to the votes.

Dad emboldened me with the motto: “You can’t win if you don’t try.” Numbed by the Senate’s inertia, I didn’t cry until driving one hundred twenty miles the next day to pack for his funeral. Angry tears spilled down my cheeks. I cursed Democratic senators and told them about my dad.

He was a fighter. Not a quitter. His dad died when he was ten. Butte-tough, he was a fourteen-year-old featherweight champion. He would have excelled at other sports, too, but he had to work to help support his family.

He was a WW II Veteran. He enlisted in the U.S. Navy in 1945, but was honorably discharged after breaking his back in a car accident. Determined to serve his country, he enlisted in the U.S. Army in 1946 and served in the post-war occupation in Japan.

He was a Blackfeet Nation Indian Chief. Honored for his role in securing programs and funding for the Blackfeet people, he was adopted into the tribe in 1972 and given the name A-pi-na-ko Si–pis-to: “Morning Owl.”

He liked Bernie Sanders. Days before he died, he said to me, “I wanted to vote for Bernie but you said that would be a vote for Trump so I voted for Hillary.” He was heartsick that Hillary won the popular vote but lost the Electoral College.

He loved his country, and was proud of his legacy. Seventeen grandchildren. Five great-grandchildren. He wanted to make their world a better place.

But not one of you Senators put up a fight.

That morning, I talked with a lifelong friend. She said one good thing about Dad’s death was that he would not have to see Trump get inaugurated. We shared our hope that her eighty-six-year-old dad wouldn’t either. After nine months of hospice care, he died peacefully four days later.

On January 21, she, her daughter, and I marched in the Women’s March on Montana, carrying our special angels in our hearts. We toasted them afterward with my mom and sister—reveling in memories of two proud Americans and their lives well lived.

Weeks since we said goodbye to my dad, I miss him. I am grateful, too. Grateful that during his graveside military honors when Mom was presented a medal and the words, “On behalf of the President of the United States . . . ,” Barack Obama was President. I am grateful Dad is not here to watch Trump unravel the country he loved, the country he fought for. Most of all, I am grateful he is pain free and resting in peace. Continue reading I grieve my father. I grieve his beloved country more. →

Thank You, Montana

November 10, 2016medical marijuanacancer, Crohn's Disease, friends, legislation, marijuana, medical marijuana, MontanaKaren Buley

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

October 8, 2016medical marijuanacancer, friends, legislation, marijuana, medical marijuana, Montana, opioids, voteKaren Buley

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.

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:

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

August 10, 2016Friendshipaccupressure, appendicitis, cancer, cousins, friends, healthcare, inspiration, nurses, Rich, surgeryKaren Buley

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.