Ways to Endure, Part 5
At the pre-wedding brunch at Sierra and Tina’s apartment, Pat helps Sierra with his corsage.
On November 16, 2012, our son Sierra Soleil and Tina Yin were married in New York City. Pat and I had landed at LaGuardia two days before that, Sierra picking us up in a car borrowed from a friend. He’d found an Airbnb for us in Washington Heights, two stops on the 1 train line past their West 138th Street apartment, big enough to accommodate not only us but Emma and Zach, Jesse and his girlfriend Emily, our old friends Sharon and John, and my mother. We relished the differences between Iowa City and Washington Heights, hub to a lively Latinx community and home to such brilliant artists as Puerto Rican actor and composer Lin-Manuel Miranda, Dominican American writer Junot Díaz, and Cuban American jazz trumpeter Arturo Sandoval, whom Sierra had emulated when he played trumpet in his high school jazz band.
The day after our arrival, while Pat, Emma, and Tina went sightseeing and shop-browsing, Sierra, Jesse, and I met up at a barber shop tucked into a Soho side street for a shave and shot of whisky. It was my first, and still only, hot-towel straight-razor shave. I don’t have a heavy beard, but my face hadn’t felt that smooth since I was sixteen.
The next morning, Pat and I went to Sierra and Tina’s for a pre-wedding brunch of appetizers and mimosas. In the tiny kitchen, Jesse was furiously cranking out tasty tidbits to amuse our mouths. It was standing room only. Pat and I were swept up in the energy of the city and the moment, meeting and conversing with friends of the couple, Tina’s Taiwanese American family, and Pam and Stu (Sierra’s biological father), who had flown in from the West Coast. At one time tense and strained to the breaking point, relations with Stu could now be described as slack. We no longer found it difficult to be at least civil to him.
The hours passed in a blur. Before we knew it, we were all heading down onto the street, west to the end of the block, then up another set of stairs to Riverside Drive. Our little procession then traipsed twelve blocks in the crisp autumn air to a freestanding portico across the street from Grant’s Tomb, held up by the same tall Doric columns. Soon, we sighted Sierra, Tina, and Miso, their corgi, coming up the street, Tina and Miso sitting in the large front cargo basket of the bicycle Sierra pedaled, the groom in a stylish dress suit, the bride in a white knee-length sheath dress.
Sierra, Tina, and Miso biking up Riverside Drive to their wedding.
Joined by thirty friends and family, Sierra and Tina said their vows under that portico looking out on the Hudson River fjord.[1] I officiated, as I did for Emma’s wedding, beginning the ceremony with something meant to be moving. I know I was moved that two of my children in the past year had expressed their love for another and taken this brave step into the world of commitments and responsibilities.
We crossed the street and lingered in Riverside Park while the wedding photographer took every possible permutation of a group portrait. Then we headed toward the subway for a rousing interborough journey to a little Brooklyn restaurant for the reception dinner. The party was intimate enough to allow me to make a toast, which went something like this: “I know my kids sometimes wonder how Pat and I have survived as a couple all these years. We do argue a lot, we often don’t see eye to eye, but we’ve never stopped talking and listening to each other. Sierra and Tina, always listen to each other, always make up afterward.”
As is always true when I spend time in New York City, by the end of that day I was both exhilarated and exhausted. This was even more true for Pat, who wore a joyful smile on a face drawn with pain. We spent most of the next day relaxing in our Washington Heights brownstone and then flew home on Sunday.
We’ve all experienced plane-flights-from-hell. By the time we got to LaGuardia, grabbed our tickets, and navigated the terminal to our departure gate, Pat was spent. Because the flight from LaGuardia to O’Hare was jam-packed, Pat had to check her carry-on suitcase at the gate. The flight was uneventful, but when we disembarked in Chicago at five o’clock, we learned all connecting flights to Cedar Rapids had been canceled because of an ice storm there. We were rebooked on a flight leaving the next morning and encouraged to spend the night at one of the nearby hotels. But Pat didn’t have her suitcase, which contained all her meds (the last time she’d do that). The crew at the gate directed us to baggage claims service, where we could retrieve the suitcase.
When the person at the claims office told us they couldn’t locate her luggage, Pat became upset and pissed off. She probably could’ve used one or two pills at that moment. We kept trying to explain that “We can’t find it” was not an acceptable answer. Feeling faint at one point, Pat collapsed into one of the plastic chairs along the office’s wall. The woman at the desk asked me, “Is your mother going to be okay?” I was seething. Through gritted teeth, I hissed, “She is my wife! Now find her bag!”
Pat’s luggage was eventually found that night, averting our mutual meltdown. We returned to Iowa City, and to the realization that all our children now lived at least a thousand miles away. That August, Emma and Zach had moved to Richmond, Virginia. Zach started work on an M.F.A. in kinetic imaging at Virginia Commonwealth, and Emma landed a job in the state medical examiner’s office, gathering data on a range of subjects, from roadkills to spousal abuse. Pat and Emma missed each other. They’d grown closer during those years since Emma’s return to Iowa City after college. We could’ve complained about our kids flying the coop, but neither of us had stayed close to home. In our early twenties, we each found our way to Iowa City after leaving the San Francisco Bay area (Pat) and the Akron, Ohio, area (me). It was not surprising our kids would follow suit.
That same month, when Pat saw Dr. Farivar for her six-month checkup, the CT scans indicated the stability of all dissections and aneurysms under observation. This was the last time that Farivar would be directly involved in her care. He left the University of Iowa in September to become the chief of cardiac surgery at Penn Medicine in Philadelphia. By then, it had been twenty-six months since her last surgery.
But the scans at her next check-up in February 2013 showed two new outpouchings (or pseudoaneurysms[2]) from the ascending aortic graft. Pat no longer had much confidence in the University of Iowa surgeons. Everyone she consulted frankly expressed hesitancy, if not trepidation, about opening up someone with her medical history.
Pat called Gretchen Oswald, the Johns Hopkins genetic counselor and Loeys-Dietz Syndrome Foundation co-founder whom she’d met the previous year. She asked Pat to have the hospital send the CT scans to her at Johns Hopkins, and she forwarded them to Dr. Duke Cameron, head of cardiac surgery. Although he described these new pseudoaneurysms as merely “worrisome,” he agreed she needed her ascending aorta and aortic arch replaced soon, before her condition became more urgent. He proposed using the elephant trunk procedure. As Gretchen explained to Pat, “They would replace your ascending aorta and the root that still has the dissection and the arch completely; then they would put a graft down within the descending aorta.” Between 2006 and 2017, this technique would be performed worldwide on only 68 patients, including Pat.
On May 13, 2013, two months after Pat’s phone call with Gretchen, she was admitted to Johns Hopkins Hospital for the surgery. Because our HMO was denying coverage for the surgery and the provider, Dr. Dietz had to write a letter wherein he explained that Loeys-Dietz syndrome is a condition typified by “arterial tortuosity and an aggressive predisposition for aneurysms and dissections throughout the arterial tree,” that in Pat’s case “urgent cardiothoracic surgery is necessary,” and that Dr. Cameron “is a cardiothoracic surgeon with specific expertise in the surgical management of aortic enlargement associated with connective tissue disorder” and “allowing Ms. Duer access to this expertise would clearly optimize outcome.” A polite way of telling the HMO beancounters to quit obsessing over their profit margin and allow this woman to continue living.
We sat in Dr. Cameron’s office while he used graphics to explain the elephant trunk procedure to us.
We arrived in Baltimore five days before her admission date for preoperative workups. Gretchen had shared information with us about lodging that catered to the families of patients. The row of two-story brownstone townhouses on McElderry Street was a block from campus. The weekend before Pat’s hospital admission, Sierra and Tina and Jesse took the train from New York City, Emma and Zach drove up from Richmond, Sierra’s Grinnell College friends Jeetander and Alicia, and Emma’s childhood friend Zoe commuted from the DC area.
As anxious as we were about the upcoming surgery, spending time with our children and their friends and catching up on what was happening in their lives proved to be a happy distraction. We strolled down Washington Street toward the historic waterfront neighborhood of Fells Point. I was carrying Pat’s portable oxygen machine, and Alicia, nine months pregnant, was carrying their first child, Siddhartha. A very leisurely stroll.
It was a lovely gathering. These young folks at the beginning of their adult lives had taken the time to join us in Baltimore and remind Pat her life wasn’t ready to end. Emma, also pregnant, made sure to remind Pat she had a grandchild to meet in November.
The surgery took place on Tuesday, May 14. Revisiting the surgical notes, I’m fascinated by their depiction of the precision and expertise required to do open-heart surgery. “We cooled to 20 degrees C. During the cooling period, we dissected out the right axillary artery and placed a longitudinal pursestring in it. When the heart fibrillated, we divided the sternum with the oscillating saw. We entered the pseudoaneurysm and induced circulatory arrest. We exsanguinated the patient…. We were able to free up the distal ascending aorta, clamp it and then resume bypass.” Total bypass time was four hours and thirty-eight minutes. No detail was too insignificant: “Sponge and needle counts were correct.” Because of bleeding at the surgical site, the incision was sutured but her sternum was left open. The following day, Dr. Cameron closed the sternum once he was assured all bleeding had stopped.
I stayed with Pat the first four days of her post-op recovery. During breaks from sitting by her side, I got to know some of the gritty charm of Baltimore. A crab house on Locust Point, floor covered with sawdust, that served the best crab cakes I’ve ever eaten. Edgar Allan Poe’s grave, tucked in a corner of the Westminster Hall Burying Ground. Perkins Homes, a former public housing development that called to mind one of our favorite tv series, David Simon’s The Wire.
One thing has stayed with me from those days at Johns Hopkins: When the doctors made their rounds, they always included (and often deferred to) the floor nurse in their discussion of patient care, a respect for the knowledge of nursing staff not as widespread as it should be. Pat finally ordered me to get back to Iowa for the last few weeks of school. When she was discharged, twelve days after the surgery, Emma drove up and took her home to Richmond, so they could return a week later for a follow-up with Dr. Cameron.
A month later, back in Iowa City, she had another follow-up with her new primary care doctor, Dale Bieber. He added an unusual note in her after-visit instructions: “Keep your spirits up. Make a few happy memories for yourself and others!”
Footnotes
[1] The lower 150 miles of the Hudson River is a tidal estuary as much as 200 feet deep.
[2] Vascular abnormalities (such as elongations or bucklings of the aorta) that resemble aneurysms in radiography, just as dangerous as “real” aneurysms.