July 29, 2019

At least I got a break from the intensely efficient technical (but always caring) professionalism of the ICU team at Bryn Mawr Hospital in Bryn Mawr, Penn., when I left for the day. Sandy was stuck in the ICU for six of her eight days at BMH. She landed there a week ago Saturday after experiencing a small stroke, possibly more than one, which the docs thought initially was a transient ischemic attack (TIA) or “mini-stroke.”

From the ER she underwent a CT scan, followed on her birthday morning, the 21st, by an MRI. The MRI led to a heart ultrasound, then an angiogram—a catheter into the brain. The neurologists and cardiologists determined that her stroke was more serious than a TIA. They debated the right range for her blood pressure. On Wednesday she went through another CT scan, insertion of an arterial line in her arm to monitor blood pressure, a kidney ultrasound, and by week’s end at least 100 reflex and vision checks. We wanted desperately to be someplace else, doing something else.

Sandy was discharged yesterday, with prescriptions but no blood pressure meds. The BMH staff will talk to our family doc about treating her BP. The first important thing: we go home.

My 50-mile round-trip drive each day between the hospital and our son’s and daughter-in-law’s home took me from the chic village of Bryn Mawr along the Main Line to I-476 for a few miles, then south on U.S. 1 through retail dregs to U.S. 202 to Glen Mills. It had me recalling my commuting days, which ended five years ago. Sometimes I drove, usually I slugged a ride from Woodbridge to Arlington. Sometimes I’d try to read, but those rides also included a lot of staring out the window wondering what’s next in our lives. In the western suburbs of Philadelphia, I lived that over again.

What do you think about when you’re stranded by an emergency far from home? Does it matter? You may as well notice what’s interesting or unique about it. The Philly area, from downtown to Valley Forge to the west, is rich in sites that teach reverently the story of the birth of the United States. We’ve seen most of them. As I worried about Sandy, I looked for oddball distractions. One curiosity around here is the abundance of Wawas, all displaying the chain’s trademark flying goose. They’re big dust-colored block-shaped places with up to a dozen fuel pumps combined with grocery stores and to-go sandwich counters and coffee stations. This is Wawaland. On Route 1 you find Wawa University and its annex, as well as Wawa Dairy Farms.

As I slogged up these roads, I was irritable with myself for thinking that the Wawas are a stereotype of generic American retail business, the descendants of the stagecoach horse-changing stations across the Great Plains 150 or so years ago. It’s true that the stores are meticulously all the same, offering the same merchandise and food items along with the gas. You imagine the same fast-food and beef-jerky shoppers and restroom users in every one. For me, maybe only for me, the Wawas represent busy-road business all over the country. Wawa is a unique name, but they sell the same stuff as a thousand other places.

Maybe that’s not fair, maybe there’s another way of looking at this. If you stop at a Wawa for a snack or a road meal, you’re likely to find what you want. All those pumps make it easier to fuel up and go. The same is pretty much true for other similar places. If you’re used to Whole Foods, you may cringe at the idea of Wawa. But you won’t have to spend a lot or stay very long.

If you embark on a road trip anywhere in America, you may be hoping to escape something by discovering something else that helps with that escape: a forest, a waterfall, a mountain range, a seashore. Something beautiful, inspiring, serene. The ironic truth is that to see those things, you inevitably battle your way along roads populated with gas stations, auto dealerships, pawnshops, cheap motels, and fast-food joints. We know, without thinking about it much, that every intercity road of four lanes or more is lined with all that. The highway that links I-40 in East Tennessee with Sevierville, on the way to the Great Smoky Mountains, may be the ugliest road in America.

Anyway, we hardly ever notice the places and the people who help us do little things and thereby free us to pay attention to important things. Our plan was to be up here for Sandy’s birthday, then scoot home Monday and get back to our routines and allow Michael and Caroline to get back to theirs. It didn’t work out that way.

Instead, a dozen smart and compassionate doctors and nurses cared for her and taught us about blood pressure and the risks of losing control of it. We learned how quickly a stroke will change your life. The way it happened will change our lives. We’re trying now to discover our path ahead.

In getting to that point I drove about 350 miles through the week up and down Pennsylvania highways, looking at what I drove past, my mind on the challenges now confronting us. I needed coffee, gas, food. I stopped at a few businesses, Wawas and others, both shiny and rundown, in the vast, near-invisible network of places across the landscape that has always existed to provide those things. They helped me in those small ways. Then I picked up Sandy and we moved on.

July 22, 2019

The temperature was close to 100F when we arrived at the scruffy, unairconditioned gym in King of Prussia, Penn., Saturday, where our son Michael was to compete in a local Olympic weightlifting competition. Our daughter-in-law, Dr. Caroline Beebe, a veterinarian, decided it was time to take Sandy to the ER.

Sandy’s blood pressure shot up last week after some difficult dental work. On Thursday she went to the family doctor, who prescribed a new blood-pressure medication. She fell asleep on the drive up to Pennsylvania Friday. When she awoke she had no feeling in her left arm. The numbness passed quickly, but later returned. Saturday morning she was tired. On the ride to the gym her vision was blurred. When we arrived she couldn’t walk for a few moments. The numbness in the arm returned. Caroline and her mom, Mary, an RN, drove her to Bryn Mawr Hospital on the Philadelphia Main Line.

The ER staff checked her vitals, conducted a CT scan, and gave her medication that calmed her. She felt better; the feeling returned to her arm. An internist examined her. He said he suspected that she may have experienced a transient ischemic attack or TIA, a “mini-stroke” that blocks blood flow in the brain for a short time, then resolves without injury.

Early Sunday morning her left arm went numb again. She went through a second CT scan. She regained control of the arm. A neurologist came by the room, conducted some reflex tests, and mentioned the TIA. She then underwent an MRI, which looks more precisely at brain function than the CT.

That afternoon the internist reported that the MRI revealed that she had suffered a small stroke, more serious than a TIA, but not serious enough to cause injury to the brain. A cardiologist then examined her heart function. He advised that the MRI data showed that she suffered a partial blockage of a blood vessel in the brain. Fortunately Sandy didn’t lose brain function. He explained that she would be examined by a neurosurgical team, who would determine whether the blockage should be resolved with medication or a surgical procedure.

He emphasized that her condition was the best that could be hoped for following a stroke. Caroline and Mary knew Bryn Mawr is a major center of excellence for the treatment of strokes. Had Sandy landed at a hospital without Bryn Mawr’s level of expertise, her stroke could have caused serious brain injury.

Later that afternoon a nurse conducted a more complicated reflex exam: hold legs upright for 10 seconds, follow my finger while looking at my nose—that kind of thing. She aced it.

So we will be in Pennsylvania a few more days, maybe a week, revising our life-in-the-fast lane schedule somewhat. Bryn Mawr, home of Bryn Mawr, Rosemont, and Haverford Colleges and next door to Villanova University, is a cute, interesting place, even when it’s 98F. The hospital treats the big names of Philadelphia sports—the Phillies, Eagles, 76ers, Flyers—and local industry big shots. You need a password to call the hospital about a patient. We just walked in, though.

Sandy is a trouper. We came north for the meet and to celebrate her birthday (66), which we observed when she awoke in her hospital bed. Michael and Caroline picked up a huge hunk of chocolate birthday cake, which she and I wolfed down after they left. We and the hospital staffers all got a huge chortle when they asked for her date of birth.

So while she’s having a hospital birthday, we celebrated other blessings: 41 married years and pretty good health for most of them, four great kids. We talked to all of them in their various corners of the world: Costa Rica, South Carolina, Colorado. They’re on board with the future.

The docs stressed that they didn’t rush the testing and exams because they knew she was stable. Caroline and Michael explained that across the wide range of types of strokes, she was at the best possible end. What she went through is treatable by the Bryn Mawr stroke team. The postscript is: understand the healing, and gets started with it, get through it, learn from it.

Meanwhile back at that blast furnace-like gym. Michael finished first in his session, lifting 191 pounds in the “snatch” and 265 in the “clean and jerk.” Didn’t get it from me.

 

July 15, 2019

“Your lungs look clear,” said the pulmonary-critical care physician, squinting at the image of my chest x-ray on the computer at his desk. “Except for this inflammation of the trachea. You need more predisone. I’ll give you a prescription.”

This guy was all business, no casual chitchat, nor even asking much about the convoluted story of how I landed in his office. Judging from the crowd in the waiting room, he’s probably overwhelmed by old guys and gals like me—people with breathing problems—every day.

Clear lungs is good news. I ended up in this doctor’s office because I got tired of coughing day and night. In April the oncologist diagnosed radiation pneumonitis, inflammation of the lung passageways, and prescribed two regimens of the steroid prednisone. When I finished those the cough returned.  I then saw the family doc, who worried about bronchiectasis, an incurable lung condition, and sent me to the pulmonary specialist. I go back to see this guy again next week.

We walked out to the parking lot cheered up. I had good words from a doctor who, without the reference from our family physician, I never would have known to call. We inched through rush hour traffic in the 90-degree heat and collapsed at home. I slugged some cough medicine and cough drops that night and slept soundly.

Now, midsummer 2019, we seem to be emerging from our year-long tour of the cancer world, or at least heading into another phase. The oncologist cut me loose from his practice except for periodic “flushes” of my apparently permanent chest port, but bounced me back to the urologist, the kidney guy. I wonder if he’ll remember our last conversation, nine months ago. We came within days of the kidney surgery when, on seeing my latest scan (at the time), he backed away and sent me to a thoracic surgeon.

Through the year, the insurance meter clicked away. I didn’t try to work out the math. The company reports that total charges by doctors, hospitals, and labs from January through June came to $232,000. That’s for the radiation and chemo treatments, office visits, two CT scans and one PET scan. In 2018 I racked up the biggest-ticket items: four biopsies (two kidney, two open-chest) two CTs, two MRIs, one PET, one stent implant, and a surprise open-chest attack on the tumor by the surgeon in December that fell a little short.

Our 2019 share right now is around $9,000 and counting. We could have put that down on a new car. Or a trip to some neat place.

To go on with this, the surgery led to consultations at PennMed in Philly in January, which led to more consultations with local docs. That story doesn’t bear repeating.

Fast forward to today after our family physician listened to my lungs and sent me to the pulmonary guy. He’s looking at a problem distinct from the cancer, although caused by it. The trachea is your windpipe, the tube that takes air into the lungs. It’s right in front of the thymic gland, which was the site of my tumor, and thus directly in the path of the radiation beam. On the bullseye, in fact. No surprise it was fried.

What I’m trying to do now is extract myself from this story. Hard to do. Most people, when they get sick, obsess about the details, me too. We could all write books about our aches and pains. But who would read those books? I wouldn’t read my own.

That’s because, in the end, the story should not be about the unpleasantness, the frustration of dealing with battalions of healthcare bureaucrats, the delays and waiting, the uncertainty, and the rest of all that. Even if it ends poorly, the story is the fight with the disease, not only by the patient but by everyone: family, friends, total strangers. The disease is insidious, never really defeated. They never get every cell. For many, once defeated, it returns.

But the fight is a mission that we hope gives life a certain decisive, cutting-edge purpose that enables you to confront dark, ambiguous, maybe unanswerable questions. Through this year I’ve met with eleven cancer specialists, physicians who have devoted careers to studying and fighting it.

All those doctors, at one time or another, said “I don’t know” when we badgered them about what’s going on. The cancer is there, attacking your body but also wrestling with your soul, trying to overwhelm, control, dominate your life. You can give up—I’ve seen a lot of that—or you can stand fast.

We’re easing off all this a bit, now at the point of thanking the Lord and all the caring and loving people who have been with us. Still paying bills, but filing away the last six months of 2018 then forward, with the six weeks of daily radiation and weekly chemo bombardments, as a receding memory. I’m running harder (but way slower) almost daily, eating and sleeping better, reading, writing, getting to Mass, working in the yard. And looking forward, months from now, to spending Thanksgiving and Christmas with the kids.

July 8, 2019

We went up to the Washington, D.C., Mall years ago, when the kids were small and we were resilient, for the traditional Fourth: the morning parade, afternoon picnic, the blazing sun and steaming humidity. Like hundreds of thousands of others, we hung around for hours waiting for the heat to diminish and dusk to settle in, until the brilliant fireworks burst over our heads and dazzled us for maybe 40 minutes. We, everyone, oohed and aahed. Then we packed our blankets and picnic baskets and trooped to the Metro.

Now we watch the show on TV, avoiding the hassle of going. This year, another deterrent: the president elbowing his way into a compulsory call-up of those who serve: soldiers, sailors, airmen, Marines, Coasties, in order to deflect their light onto himself. Watch for all of it in a soon-to-be-released campaign video. Afterward, the catcalls back and forth reinforced the truth that the country is torn apart. No middle ground exists.

Trump’s guttersnipe manner and his lies lacerate deeply all sides of the political culture, whatever that is. He slithered into office because enough angry people choked on their votes in Republican primaries in 2016, then enough of them in several critical electoral states took satisfaction in electing a failed real estate salesman over a candidate perceived as entangled in the Washington “establishment.”

Except for the noisemaking hardcore minority, the once-Trump voters now are both embarrassed and sad. The geezers among them, at least, had dreamed of a reincarnation, not of Reagan, whose “conservatism” was mostly rhetorical, but of Eisenhower and (for them) the now-dreamy 1950s.

It was Ike who stood up to Khrushchev and Mao tse-Tung and battled the British-French attempt to annex the Suez Canal. Eisenhower sent Army troops (the 101st Airborne Division) to Little Rock to enforce the Civil Rights Act of 1957, refused to use nuclear weapons to end the Korean War or to help the French at Dien Bien Phu. He condemned the Soviets for sending tanks into Hungary but then avoided starting World War III. He appointed Earl Warren, liberal Republican, as Chief Justice of the Supreme Court, and Justice William Brennan, liberal Democrat. He invented the term “military-industrial complex.” He made mistakes, but he was a president.

Those who understand Eisenhower and Trump know one thing: Trump is no Eisenhower.

So here we are, facing the challenge of overcoming, overcoming what? Mendacity, cynicism, hypocrisy, greed, all overlaid by indifference to the overriding mission of public life: service to the people. Trump used a term he didn’t invent: the “swamp.” The people, too, recognize it. When the people believe they are not being served, they act. For enough of them in 2016, that act was a vote for Trump, and a country split apart. Republicans surely fear they will act again.

The swamp festers in plain sight. But overcoming the swamp is within. Failure in public life reflects failure in private life. Trump is a failed president because he is driven by a darkness that psychologists write books about. It seems a long reach, though, for institutions like political parties and churches to do anything about it. Political parties and most churches have lost all credibility.

Overcoming is private. It has to do with looking within and seeking truth, which is seeking God. That excruciating task can be helped along by, among other things, an awareness of mortality that both unsettles and transforms the soul. Hardly any of the career-feathering cynics in government today, appointed or elected, would continue to ignore the public trust if they found themselves coughing their guts out every evening, because it may well signal the end.

One can find the resolve to overcome, to beat that thing, whatever it is. It is the resolution that gives strength, that shows the path away from sickness, depression, despair. It is faith, from wherever it may come, that defeats cynicism and indifference. Eisenhower, elected because of his service as Supreme Allied Commander, suffered throughout his two terms with chronic heart trouble. He made decisions from hospital beds. While being watched by doctors, he worked to reduce U.S. and Soviet nuclear arsenals and destroyed the evil of McCarthyism.

I just finished reading a novel, the first in years; went to a couple of yoga sessions; signed up for an ultra-trail event; got recognized as a life member of the Knights of Columbus. Good stuff. But I also did two more important things: visited our family doc—a truly wise man, and got an appointment with a pulmonary-critical care specialist, my prize for being excused temporarily from the cancer ward. In a mysterious way, doing those things makes you want good leaders.

The typical federal official may never think about the things I think about. But everyone has something to work on. It may not be physical. But it’s there, to be overcome.

Things are very wrong today. Twenty-four Democrats are seeking the party’s 2020 presidential nomination. In 2016 17 Republicans ran for the nomination. (Seven withdrew before the primaries.) A lot of smart people have decided things are not right. But millions of others just have to show up and vote. First, look within.