Ways to Endure, Part 8
In January of 2015, after a week-long visit from Emma and Oscar, Pat posted this on her Facebook page: “I knew something would be worth five open heart surgeries in five years. Celebrate with me my first full year with no surgeries – and none scheduled – and a full year with my grandson Oscar.”
In March, Pat and I returned to the Mayo Clinic for a follow-up cardiology consult with Dr. Connolly. Pat told the doctor she’d been experiencing sporadic bouts of right-side chest pressure since the January 2014 surgery. Recently, she was knitting in her glider chair when she felt a sudden sharp pain in her right side that radiated, spasm-like, into her neck and back. She also admitted to a recent increase in falls, even though she’d begun using a cane when she walked. Her knees would lock up and her legs become wobbly.
Connolly couldn’t find a cause for the pain and falls other than the cumulative toll of five surgeries, but in her review of the CT scan performed in December at the UIHC, she noted “a resolution of the air and fluid in the mediastinum with just a small amount of residual fluid,” allaying our shared concern about an aortic graft infection. Connolly also concluded the scans showed no aneurysms in need of surgical repair at that time, although she reminded us (not that we needed such a reminder) of the importance of “ongoing surveillance” of Pat’s cardiovascular system.
We wouldn’t visit the Mayo Clinic again for another year, but Pat was seeing doctors at the UIHC on a regular basis – her primary care doctor, a gynecologist, an otolaryngologist. Still struggling with dysphonia and dysphagia, Pat was weary of explaining her hoarse raspy voice and exerting herself to be heard, but the swallowing issues were more serious. It wasn’t unusual for her to stop in the middle of dinner because food was caught in her esophagus. I’d notice her grow quiet while trying to swallow what was stuck in the base of her throat. Often she’d have to abandon the rest of her meal. I never knew what to do other than rub her back to help her relax.
But those days still felt like a welcome break from the steady diet of aneurysms and open-heart surgeries, and we were determined to make the most of it. Pat went to Richmond in March to visit Emma, Zach, and Oscar for a week. She continued to collaborate with her Montréal friend Alexander Galli, developing ideas and text for informational posts for the LDS Foundation Canada’s social media site, and when the weather began to warm, returned to her gardening work. I wrapped up my ninth year at Washington High School in Cedar Rapids. The Washington Literary Press, an extracurricular group I advised, hosted a reading to celebrate its culminating issue – 104 pages filled with poetry and prose and art in full color. The senior editor, Bridget Williams, was so organized and dynamic that my role was often simply to hang out in my classroom after school while they worked, just in case they had questions.
I packed up my classroom for summer cleaning and headed to Kansas City for my AP Language and Composition gig – nine days of hard labor in the cavernous Kansas City Convention Center. In between 25-essay packets, I’d look at my table mates and exchange commiseratory looks, or maybe a raised eyebrow and mouthed wow! We were sometimes impressed by what students managed to write, given the challenge of three essays in different genres on different topics in two hours. Meanwhile, a billboard in the boho neighborhood I walked through from my hotel to the convention center displayed a message that felt uncannily personal: “Dream High.”
Billboard in Kansas City
Next month, Pat and I flew to Richmond to spend a week with Emma’s family, and I continued on to northern New Jersey for my third NEH Landmarks Workshop. Based at Ramapo College, we studied the history, geography, ecology, and culture of the Hudson River. We learned the river is not only a tidal estuary but also, because of its depth and its formation by glaciation, a fjord. Atlantic sturgeon, which average eight feet in length and can live for sixty years, are found in the river. We visited the Liberty Science Center in Jersey City and were ferried across the river’s mouth to Lower Manhattan. Upriver, we toured Washington Irving’s home at Sunnyside as well as Lyndhurst, the Gothic Revival country home of Gilded Age robber baron Jay Gould. On our last day, we took a leisurely boat excursion from Tarrytown to Bear Mountain and West Point.
Pat and Sierra in West Seattle, August 2016
In August, Pat and I flew to Seattle to visit Sierra and Tina in their new digs on hip Capitol Hill. Emma’s family joined us, staying at a nearby Airbnb, while Sierra and Tina – and their corgis Ollie and Miso – graciously hosted us in their cozy apartment. Emma was beginning her second trimester and sporting a beautiful baby bump. Pat’s year and a half without surgeries felt like a reprieve. We knew there was no cure for Loeys-Dietz Syndrome, and the long-term prognosis was bleak, but we saw those days as a chance to store up some happiness. I recently came across this poem, written that summer, which captures the spirit of those days:
After All
After all these years together
what flowers can I bring
to express my love for you?
After all, it is battered, clumsy,
a bit unkempt, yet persistent.
I could’ve gathered rue anemone
from the April woods – five
delicately complex white petals
with a dab of green at their center.
I could’ve picked a bouquet of the
wildflowers you perennially admire –
shooting stars and dame’s rockets.
I could’ve stopped in a neighbor’s
yard and picked those blooms
that look like smoke, like
grey clouds tinged with pink.
Instead, I’ll slip into someone’s garden
and cut down a tall sunflower –
thick twelve-foot stalk twisted
by a summer of turning to
follow the bright path of the sun.
Holding that awkward banner,
I’ll parade through the streets
in my procession of love for you.
When Linus Bee Duer was born on January 11, 2016, Pat flew to Richmond to help Emma and her growing family. We both returned during my spring break in March so I too could snuggle Linus, a blue-eyed bundle of energy with a fuzz of red hair. By then, Pat had been able to avoid surgery for over two years, but it was not a bed of roses. On her March 30th birthday that year, she posted on Facebook: “My mantra for the day – Yup, still here! Ha!”
When asked by doctors to rate her pain, she usually put it at 7 or 8 out of 10, and she never exaggerated. Her medication list was twenty items long, including Celebrex, Lyrica, and hydrocodone for pain, and Xanax, Klonopin, and amitriptyline for anxiety, depression, and panic disorders. That April, after identifying an abdominal aortic aneurysm that had grown to 4.7 cm., doctors at the UIHC advised surgery. But Pat sought out a second opinion from Dr. Black at Johns Hopkins, who recommended holding off because of the high mortality risk due to the complexity of the surgery and her medical history. She then scheduled a surgical consult at the Mayo Clinic to break the tie.
She received the usual thorough Mayo Clinic experience on her visit: an echocardiogram, blood tests, and four different consults with two cardiologists and two vascular surgeons. They agreed with Dr. Black that surgery could be postponed until the aneurysm reached 5 cm. Follow-up appointments were scheduled for August. Two hours into the three-and-a-half-hour drive home, Pat had to pull off to the shoulder because she was in so much pain. When she called me from the car, I promised I’d never let her do that on her own again.
When I returned to Kansas City in June for my AP essay reading and scoring gig, Pat flew east to Emma’s new home in Christiansburg, near Virginia Tech, where Zach would begin teaching in the fall. Pat, Emma, and five-month-old Linus drove to Baltimore for the Loeys-Dietz Syndrome Conference at Johns Hopkins, where Pat finally met her friend Alexander. They’d been corresponding for almost two years while working on their “LDS Monday” posts, and in the process, had grown close, often messaging about life with Loeys-Dietz, and life in general. She would share photos of her grandchildren, and he’d share photos of his college graduation.
Pat, Emma, and Linus at the LDS Foundation Conference. Linus was popular among the attendees.
We returned to the Mayo in August for Pat’s scheduled appointments. After reporting intermittent fevers and chills over the past few months, and after a CT scan showed evidence of an abscess and endocarditis along the aortic root graft, she was admitted to Saint Marys Hospital.[3] “Findings were suggestive of suspected graft infection.” This recurrence of a stubbornly persistent and enigmatic problem was disheartening. Pat received daily visits from cardiologists, pulmonologists, cardiac surgeons, infectious disease specialists. They all communicated admirably with each other and with us, but no one could offer a good explanation for Pat’s condition.[2]
A week later, she was discharged with a prescription for a one-month regimen of vancomycin and cefepime – antibiotics to fight bacterial infections – and a gauntlet of appointments at the end of that time. Four days after we returned home, Pat coughed up a cup of blood in the morning, was seen in a UIHC emergency room, and admitted to the MICU. Codeine suppressed the cough, which stopped the hemoptysis, and she was released without any further clarity on her condition.
At that point, we were reeling. In a file containing Pat’s 2016 hospital reports is a copy of her living will, which declares, “I direct my attending physician to withhold or withdraw life-sustaining procedures that merely prolong the dying process and are not necessary to my comfort or freedom from pain.” Buried away in a file cabinet for over twenty years, that piece of paper was now with us wherever we went, a document with the legal precision to counterbalance all the uncertainty we faced.
Emma flew out with Oscar and Linus to help in whatever way she could. On September 20, she drove them all to the Mayo for Pat’s first appointments, and I joined them five days later to relieve Emma for the second half of the schedule: 21 appointments in 11 days. We filled the Mayo bingo card: urine test, blood tests, exhaled nitric oxide test, pulmonary test, PET scan, chest x-ray, cystoscopy, cardiology consult, urology consult, cardiovascular surgical consult, and daily infusion therapy (a PICC line[3] having been inserted so Pat could receive IV antibiotics). Starting with these appointments and through the end of the year, I jotted notes in an attempt to keep track of what was happening and help Pat advocate for herself. Our heads were spinning and it felt like we’d lost control, but writing the notes somehow steadied me:
Cardiovascular Surgeon says, “No change in abdominal aneurysm.” Pulmonologist wonders, “Start with bronchoscopy? Endoscopy?” Source of blood coughed up? Asthma? He’s skeptical.
Cardiologist states, “Blood cultures negative.” What of the hemoptysis? Infection on mitral valve? Is surgical action viable? PET scan reveals improved but persistent infection and inflammation. Stop antibiotics? Duration?
Urologist notices spot on bladder. Tumor 1½ to 2 centimeters. Low-grade or high-grade invasive bladder cancer? Wait on bladder tumor scope to coincide with aortic surgery? Surgery if it grows outside of the bladder? Chemotherapy? Radiation? Partial cystectomy? Trans-uretheral resection? Concerns about total anesthesia.
Pulmonologist orders, “Keep using Dulera. Start Doxycycline and Cefadroxil twice a day. Wear sunscreen, hat, long sleeves.
Cardiovascular Surgeon speculates on risks. Unsure of the nature of infection. Can’t sterilize synthetic graft materials. Can we offer surgery with a realistic promise of survival? If we can control the infection, that would be a benefit. Hemoptysis still not under control. Surgery, the only solution, is a long shot. Aneurysms pose low degree of danger. Infection is the big issue. Bladder cancer? They haven’t thought about it.
Infectious Disease says, “Increased uptake on scan.” Next step? Coverage of oral antibiotics not as broad spectrum as IV. What are we not covering? Guessing isn’t working. Best case: Sample of infected tissue. Needle aspiration. CT-guided biopsy. If it appears too risky, Radiologist will scrub the procedure. No 100% guarantee they’ll be able to read the culture.
Urologist observes, “Blood in urine.” What’s the urgency of the tumor? How long do we have to think about this? Progression: More than 6 months, less than 12. Blood pressure: 82/50. Hypotension and fatigue. Tumor is stable since last PET scan. Urinary bleeding, urinary tension, rust-colored urine. Some cramping and bladder spasms. Some constipation. Incontinence with coughing and sneezing. Radiation therapy is an option: 5x/week, 20 treatments.
Infectious Disease announces, “Moderate decrease of infection!” Low-grade temps in evening and night. Antibiotic is controlling the infection. Chemo would suppress the immune system.
Medical Oncology Team: New spot on the lung. Pulmonary mass. Cancer metastasized. “Wait 8 weeks for another CT scan?” If it is lung cancer, only chemo works. What about heart infection? Medical oncology questions: Tissue diagnosis? Biopsy?
Over those last months of 2016, Pat stood in the eye of a perfect storm of aneurysms and aortic graft infections and then bladder cancer and then lung cancer. The treatment options for each condition conflicted with the other conditions. The discovery of the spot on her lung was the second gut punch. We looked at each other, dazed and exhausted. I held back my feelings, ready to follow her lead, which had never led us wrong. She said she wanted to spend as little of the time she had left in hospitals. I held her hands, reassuring her that I would be by her side. A short video Pat recorded with Alexander on November 24, 2016, for their LDS Foundation Canada project shows better than my words could how she handled all this: The Faces of Loeys-Dietz Syndrome. (Please turn on sound.)
Footnotes
[1] In 1883, the Sisters of St. Francis approached Dr. William Mayo with an offer to raise funds to build a hospital in Rochester if he and his sons provided medical and surgical care. In 1889, Saint Marys Hospital was opened, and in 1986 it became an official part of the Mayo Clinic campus.
[2] We facetiously hoped “Dr. House” would come breezing into her room with a magical diagnosis, but that series had ended in 2012.
[3] A Peripherally Inserted Central Catheter line is a long, thin tube inserted through a vein in the arm and passed through to the larger veins near the heart.