Recap

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.