The Port

November 25, 2019

On Monday the medical oncologist told Sandy and me that my last CT scan looked good. He isn’t one for drama. No thumbs-up or touchdown signal. He said what cancer doctors say: “Within the constraints of our detection capabilities and the close proximity of organs in the region, I see no need for further treatment at this time.”

We sat back in our chairs and exhaled. For a moment I said nothing.

My first question: “Can I get this taken out?”  I tapped my chest.

“Yes, let’s go ahead and take it out. You can always put it back in if, God forbid, you need it again,” he answered. “But that’s not the end of the world, either.”

We’re talking about the plastic port embedded in my chest. It was inserted in a surgical procedure back in January, when the doctor nailed down the schedule for my six-week chemotherapy-plus-radiation regimen. The port is a connection point for the needle through which the chemo drugs and other medicines flow. My best analogy is a wall electrical outlet—you plug in your lamp, computer, hair dryer, and get power. The drugs flow from the IV through the port into a major vein, avoiding the potential for damage to veins of repeated needle sticks.

So you show up for your treatment, stretch out on an lounge chair, the nurse inserts the needle in the port, and you sleep, on and off, for five hours. Intermittently you gaze up at the IV bag.

The doc wants another scan and another meeting in five months. Back in June he was encouraged after looking at my PET scan. But the port had to stay. He wanted to see definitive healing.

On another front, I see the urologist in January for a cystoscopy, an unpleasant procedure—involves a tiny camera—to check the urological landscape.

image-16428971682669693859.jpgHe gave me a more or less positive report a week after he removed my left kidney and ureter. “I took lots of surrounding tissue out,” he said. So along with losing the organs I got a free liposuction. So I won’t need to schedule one of those. He added that what he found “could be aggressive,” meaning I need watching. So I’ll be in his office, grimacing, in a couple of months, and out into the future.

Sitting in the oncologist’s office, I recalled the cardiovascular surgeon’s comment after he opened my chest last December, then quickly aborted the procedure when he saw what he saw. “You’ve got a really ugly tumor in there. You need further treatment,” he warned.

Seems like a lifetime ago. So I’m lucky. Blessed. All those prayers by so many people, family, friends, total strangers, carried some weight with the Almighty.

Through all this—18 months—we’ve had lots of adventures as we reexamined life: a bunch of trips to out-of-the way places; happy visits with family; some rich experiences doing practically nothing. I wondered about the future in my own peculiar way, which is way different from the way young people think about it. When I got into my dark moods I wondered about the future of the country, as a huge swatch of Americans ignore or defend the president’s lies, and coming generations likely face crippling tax burdens to pay those federal entitlements to the oldsters.

Sometimes I talked vaguely about picking up last year’s road trip where we left off, pre-biopsy. The plan, sketchy as it was, had us pushing on from Nevada to San Diego. We’d drive up the Pacific coast to Seattle. From there, state highways east. Or perhaps head south to Utah to see those famous parks.

Right now it’s just me talking—or hallucinating. Other things, like the bills, insurance, fixing up the house, have intruded.

Meanwhile, others sit in oncology treatment spaces waiting for their chemo and radiation, and the side effects that follow. They’re both older and younger than me, hoping for their own good news, some with vicious, voracious strains that the conventional treatments can’t defeat.  Sometimes the chemo cocktail doesn’t have the kick they hope it will. Sometimes the radiation beams seem to bounce off the tumors. Our son, the medical physicist who works with cancer radiation therapy, says simply, “They never get every cell.”

Those I recognize from my visits to the waiting rooms will move on, replaced by others. They’ll wonder about the future: Why is my life suddenly so complicated? Why is this bad joke on me? I wonder: how do those eighty- and ninety-somethings do it? What good did all that jogging do for me? What about all those vegetables and fresh fruit?

You recognize sooner or later that the jogging and eating well and getting enough sleep all amount to a holding action. Eventually everything breaks down.

Once you’re clear on that, you can relax and enjoy life. We don’t know where the cancer will take us, although we’ve heard those stories about patients living decades, knowing it’s there, knowing the docs never get every cell. What matters is how we fill up the time ahead, understanding that it’s given by the Lord as something precious. The illness is a mystery that transforms. The sick pray for healing, but they really pray to make their lives, their presence, a gift for those around them, for everyone they encounter.

So my doc finished up, saying, “let’s schedule the port removal. We’ll see you in April, then in six months and then a year later, then we’ll look out over three to five years.” Five years? Sounds good to me. By then he may be head of a hospital somewhere. Our older grandson will be 11. We haven’t scheduled the five-year appointment yet. I’m free on Mondays.

Back to Waffle House

November 18, 2019

We had breakfast at Waffle House the other day, the one closest to us, down in Dumfries. I hadn’t been in a while, but had to go after reading the piece in The Washington Post about the Birmingham, Ala., Waffle House where customers jumped the counter to help a lone employee stranded on duty.

It wasn’t my first Waffle House meal. Not by a long shot. The food and service were fine. The music was loud and awful, we asked the waitress to turn it down. She shut it off. Beyond that, I couldn’t hear myself think over the raucous argument of two guys in the booth behind us about an Alabama-Auburn football game.

Most people hereabouts know Waffle House, but no one I know goes there much, if ever. It tends to be a Southern experience. The company says it has 2,100 outlets in 25 states, but most in the South: square, squat buildings with big yellow signs. Waffle House, if you ask most people who have eaten there, is a bit farther down the quality scale from Cracker Barrel or IHOP. It’s not just that the menu is limited: waffles, eggs, hash browns and grits, some sandwich items like burgers and grilled cheese. Maybe it’s the name. Maybe it’s the spare, garish layout of the restaurants, with big round glaring light bulbs and cramped booths.

img_20191114_145703050_hdr5568111778877950471.jpgSome people don’t trust places that operate 24/7. Crime occasionally occurs in Waffle House parking lots, as at other 24-hour places. Early in the morning on April 22, 2018 a mentally disturbed man killed four people and wounded two others with a semi-automatic rifle at a Waffle House in Antioch, Tennessee, near Nashville. By some miracle, a customer jumped the shooter and wrestled the weapon away from him.

I’ve heard, too, that WH employees aren’t always in the best of spirits. They’re short-order cooks, servers, and busboys and girls, paid what you would expect. Conditions aren’t great. The late-night shifts deal with customers wobbling in from bars, who aren’t in great spirits, either. The restaurants are open 365 days a year, which means somebody’s always working on the early mornings after New Year’s Eve, St. Paddy’s Day, and other heavily drunk occasions.

In the Birmingham story, now all over the internet, Ethan Crispo showed up at the Waffle House just after midnight. He found the single employee, a young guy named Ben, stuck with about 30 customers. He reported that several patrons got up and started bussing tables, making coffee, and taking orders. “Humanity is great,” Crispo said. His story and some photos provoked hundreds of comments about the spontaneous kindness shown by the folks who jumped up to help Ben get through his shift. Especially now, some said, when things in the country aren’t so great. Southerners said it showed how nice Alabama folks are. Others choked on that and guessed that they’re all Trump people who wouldn’t have helped Ben if he were black.

Some commenters pointed out that, kindness aside, liability problems could arise with untrained, uncertified people handling food, a customer slipping and falling on the obviously dirty floor, somebody getting food poisoning. The big question: where was management?

The debate ensued, the good-feeling experience versus the potentially serious legal questions. Were the scheduled employees so poorly paid that they didn’t care about missing a shift? Was Ben unwilling to lose his shift pay by closing? Did his manager order him to keep the place open?

The story, and my WH breakfast the other day, brought me back to a treasured but bizarre experience. Almost exactly two years ago I entered the Pinhoti 100-mile trail run through the Talladega National Forest in northeastern Alabama. The race has a 30-hour time limit, which would be a stretch for me. I talked my daughters Laura and Kathleen into serving as my crew.

I started the course fast and got ahead of the early cutoffs, but at some point picked up dirt and grit in my shoe, which broke the skin. I changed socks at the first drop-bag station (27 miles), which cost me 20 minutes. At the 40-mile station Laura and Kathleen patched up my ankle. But shortly afterward I missed a turn in the dark and lost 40 minutes retracing my steps. I missed the cutoff at 55 miles by 15 minutes at 11:30 PM.

ed finish, pinhoti (cropped)1286814310841460514..jpg
Pinhoti, the End

Kathleen and Laura met me and we drove to Sylacauga, Ala., the finish point. Since I expected to complete the race, I had no plan B, so we ended up at a Day’s Inn in Childersburg. I was starving, so at 3:00 AM we were sitting in a Waffle House next door. Two employees were on duty, exquisitely polite. We were the only customers. I wolfed down a mountain of scrambled eggs and hash browns. A mournful Emmylou Harris tune played on the radio, a well-armed local cop sat nearby. The girls got impatient, but I sat there a little longer, my eyes closed, sipping rich coffee, munching on my hash browns, on a quiet early Deep South Sunday morning.

I probably appreciated that Waffle House because—as in the Hemingway story—it was a clean, well-lit place, after hours in a dark mountain forest, and I was exhausted and famished. That was my situation then and there. Waffle House, I guess, was just a place I stumbled into.

Same thing, probably, for Mr. Crispo with his experience, and his thoughtful words about the people who helped poor Ben on his shift. He saw humanity, generosity, kindness. The Waffle House was the scene where all that goodness played out that early morning in Birmingham. But people are like that. And we all know it happens at other restaurants, some classier, some dingier. Try Huddle House.

Late Fall

November 11, 2019

Three of our kids are in Europe this week: son Michael and daughter-in-law Caroline are visiting Belgium and daughter Laura is visiting friends and doing free-lance work in the U.K., after spending a couple of months working in Costa Rica.

That’s all good. We’re hoping to see them at Thanksgiving or Christmas. We’ve never been to those places, and would like to travel to some exotic locale. But now we’re at home looking out the living room window at the leaves carpeting the back yard. In past years, like everyone else around here, I would be out there raking and sweeping the leaf-blower around like a fencer wielding an epee. We’d drag heavy bags of leaves to the curb. I’d dump some in a mulch pit at a far corner of the yard, with the idea that by spring they would become rich topsoil for planting things. Then we’d watch as the wind deposited another five or ten million leaves.

Gradually it dawned on me that all that work was pointless. What was left of the grass never did any better exposed to the cold winter sun instead of covered with leaves. And the mulch pit never produced much topsoil. I would push the wheelbarrow up the hill in the spring to harvest it, never got a full load.  I can’t say it ever did any good.

I didn’t start this fall ducking the yardwork, I was excused to get over my operation. Just as well, the yard looks okay covered with leaves, a patchwork of bright yellows, reds, and browns, like the trees themselves before they shed. Sure, our front yard stands out among the neighbors’ as an example of suburban yard-care neglect. Passersby glance at the leaf quilt, then up at the house, disapprovingly. I’m okay with that. Actually it cheers me up.

img_20191108_113507667_hdr2915666104472282590.jpgStill, this weekend’s cold snap and the end of the leaf-collecting frenzy reminds me that we are in the dregs of fall, post-Halloween, pre-Thanksgiving, when it now gets dark earlier and stays dark later, the woods duller and grayer as the leaves disappear, the TV weather people pleased to issue scary forecasts. We’re wearing sweatgear for our walks, and walking faster against the chilling breezes. This is the season when old people feel the pace of time more keenly, in the rush toward the dark end of year.

That could be because lately we botch even happy things: the anticipation of the powerful messages of Thanksgiving and Christmas now is overwhelmed by auto- and furniture-sales advertising and warnings of holiday highway gridlock. You can’t miss all that unless you avoid TV and newspapers, because bad news is what’s news, for example, the next revelation in the Trump impeachment series of revelations, now breaking with blurring speed.

But that isn’t it at all. December, now hurtling towards us, promises cold and darkness, which together hint at the end, out there for all of us, but not so far out for some of us. Still, we’ll look forward to watching the grandsons have fun opening their stuff Christmas morning. Christmas morning passes, in the inexorable passing of those short cold days and long cold nights. Then there’s the fake holiday, New Year’s, which some of us try to enjoy.

The falling of the leaves is a cheap metaphor, sure, but it’s there, impossible to miss if you see metaphysical meaning in things that have none. You get through November and December by living vicariously through the cheerfulness of others, young children and their parents, who stay young for a while through the happiness of their kids. That’s the way it was for us. But then too, God’s eternal lesson for all of us, old folks and everyone else, is the end becoming the beginning. The dark end of the last year begets the start of the next one. The wait seems interminable right now, but we know that winter gives way to spring. Every year. The bleak gray mornings that follow December eventually reveal sunlight a little earlier that lasts a little later in the day, even while the leaves still are piled in the corners of your yard, turning to mulch on their own accord.

That promise of good news seems remote right now, when we’re battered by relentless, soul-devouring commercialism, the empty glibness of political campaigns, cowardice and corruption in the nation’s leadership, and lousy weather.

But we still look forward to gathering at the dark end of the year, maybe traveling exhausting, dangerous miles to join those close to us at Thanksgiving and Christmas. We genuinely are grateful for getting there, and then to make it to church for too-long, too-elaborate services that may only clumsily express the message we are waiting and hoping for. We take the kids, we urge their parents to attend. We oldtimers sit, trying to look forward to the remainder of life, trying to remember to thank the Lord for all we have and all we’ve learned and experienced. And we brace ourselves once again to start over. Then, if we still care, we can hire a teenager to bag the leaves.

The Network

November 4, 2019

Your family doctor sends you to a specialist, you call his office. When you break through the voicemail, the first thing the receptionist says isn’t “Good morning,” but “Insurance?” When you show up, she wants to xerox your insurance card before acknowledging you exist.

Almost nothing worries Americans today, especially older folks, more than access to health care. Health insurance is the centerpiece of the Democratic hopefuls’ campaigns. Recent federal data show that some 27.5 million Americans don’t have health insurance; roughly the same number have inadequate, bare-bones coverage. Everyone has heard tragic stories of families ruined financially by the costs of medical care for chronic conditions.  If you’re frustrated with your health insurance, remember this: someone else is worse off than you are.

We hear too that Canadian and Scandinavian policies are more compassionate, less-costly alternatives. I have a cousin who traveled multiple times to Mexico for complicated dental care—crowns, root canals, and so on. The best dental care he ever had, he says, and the cheapest.

The costs of Medicare and Medicaid are rising, taking a huge share of the federal budget, even while they’re considered untouchable by Congress. Nobody wants to be accused of diddling with healthcare funding for oldsters.

If you’re working and your employer provides health insurance, that’s what you get. You watch the premiums rise, but at least you’ve got insurance.

If you don’t have employer coverage, finding health insurance can be a nightmare but, in an absurdist way, an adventure along the highways and byways of giant bureaucracies, government and non-government.

When you turn 65 you’re eligible for Medicare. You pay your Medicare premium. You can go with “original” Medicare, which pays most but not all health care costs. That means you need to buy a supplemental policy from a private insurance company.

The other route is Medicare Advantage plans, which are provided by private insurers as contractors for Medicare. The principal types are health maintenance organizations or HMOs and preferred provider organizations (PPOs). These offer coverage within local networks. HMOs require you to use doctors and hospitals in their networks and get a referral from a primary care doc if you want to see a specialist. They do provide emergency out-of-area coverage. The PPOs are more expensive, but don’t require referrals, and provide out-of-network coverage.

When I quit working, I tried to be smart about this. The sales pitches from insurers are intense. I started with an HMO with one of the big outfits. In the second year it covered a physical and therapy for a broken ankle. In the third year it covered most of the costs of three days in the hospital for rhabdomyolysis I developed after a tough trail race.

img_20191023_112734821_hdr4089674848130382737.jpgLast year things got crazy. A biopsy found cancer in my left kidney. Then I developed a thymic carcinoma near my heart—higher priority. Our family doc recommended a cardiovascular surgeon. Sorry—he was out of network, can’t see him. I called others, all out of network. After lots of dialing, I found one in network. The surgery didn’t finish the job, the surgeon recommended radiation and chemotherapy. Meanwhile, having discovered the shortcomings of my HMO, I switched to a PPO during the open season (October through early December), enabling me to get out-of-network treatment. That would mean paying the out-of-network costs, but I was covered. I felt bulletproof.

In January we traveled to Philly to talk to oncologists at Penn Med. Penn is one of the best cancer centers in the country, but out of network. The proton radiation therapy offered at Penn and now at Georgetown (also out of network) but nowhere in northern Virginia precisely targets the tumor, avoiding damage to healthy tissue. But the costs, one doctor said, would be huge.

I called their insurance people. Although I had coverage, both Penn and Georgetown considered my PPO to be regional, they wouldn’t go near it. A Penn insurance guy said, “switch to original Medicare—with cancer you can’t get a supplemental, but you can apply for financial aid.” Financial aid. Sure.

I went with the local guys. The medical oncologist who oversees the chemo is in network. The radiation practice is out of network, but in the same building as the medical oncologist, making it easier on the days I had both treatments. So I said okay to that.

The updates from the insurer detailed the providers’ charges and the “discounts” for insurance. Insurance paid a smaller amount. Providers then are free to go after the patient to recoup costs. And they do. We paid. Meanwhile, I’m still feeling the effects of the radiation, eight months out. Last month the urologist lopped off my left kidney.

My PPO premiums are going up next year. I decided to move on. Original Medicare is out, since I can’t get a supplemental until I’m two years out from my last cancer treatment. A competing PPO offered lower premiums. “We cover dozens of providers in your area,” the saleswoman said. (It’s about the sale.) “And if they’re out of network the copay is only $30.”

That’s the copay. I can guess what the actual out-of-network costs would be.

I called our family doc and the urology practice that monitors my remaining kidney. “We take that,” both administrators said. Encouraged, I checked with the medical oncologist who’s kept the thymic cancer in check. “To answer your question,” his insurance manager said, “We don’t accept that plan.”

In a way, that makes the decision easy. You don’t change cancer doctors. Two choices: stay with what I’ve got and pay the higher premiums, or go back to the HMO, since all three docs take it, and hope I don’t need to go out of network.

As St. Thomas Aquinas said, in a somewhat different way, it is what it is. You look downrange, you remind yourself how old you are. You ask the Dirty Harry question: Do I feel lucky? There’s a third option: get better. That’s the one I’m working on.