When I revealed on Facebook a diagnosis of stage 2 pancreatic cancer last year, my family, friends, former colleagues and even friends of friends sent messages of love, support and prayers. I needed that.
I couldn’t help but think of Steve Jobs and Patrick Swayze, who’d both died of this killer in their 50s. The survival rates were grim. Only one person out of 20 would be alive five years after diagnosis. At 63 and recently retired, I’d looked forward to travel and quality time with my wife, Laura, and adult daughters. I feared those dreams would never materialize.
After a year of stomach problems, a CT scan had revealed a mass, which a biopsy proved malignant. Following a month of daily visits with specialists, countless blood draws, more scans and immunizations, I went under the knife. My surgeon removed half my pancreas, my spleen, and the lymph nodes between the two organs. Laura waited through the five-hour procedure with her besties, and I awoke to big smiles, flowers and a teddy bear.
There was no proven cure, but my doctor prescribed six months of chemotherapy. Every two weeks, I’d sit in a chair for six hours watching poison drip into a port connected to an artery in my neck. It made me dizzy. Afterward I was so sensitive to cold that I had to wear gloves to get anything from the fridge.
Between treatments, I experienced nausea, constipation and cramps. To ease them and increase my chances, my doctors gave me clear guidance: Drink water constantly and exercise like mad.
I swam, bicycled, lifted weights and took yoga classes. In my neighborhood park, I practiced tai chi and meditated. Added to that were weekly appointments to my acupuncturist and my shrink, both vital members of my “team.” Friends accompanied me to the infusion center and held my hand. On March 11 of this year, I had my first CT scan after chemo that showed I was cancer-free.
In the same visit where I learned this good news, my oncologist warned me about COVID-19. Without a spleen — which makes infection-fighting white blood cells — my immune system was permanently compromised. She said it would be a good idea to self-isolate. The following weekend, my city of Washington, D.C., started its lockdown.
I got this, I thought. It would be a cinch compared to cancer. Isolation, face protection and social distancing I could live with. Since the operation, whenever we were invited to parties, I routinely asked beforehand if anyone was known to be sick. I declined if the answer was yes.
Having dodged a bullet last year from 'the big C,' I didn’t relish dying from a different C nobody saw coming.
Now, on daily walks and bike rides, I was comforted to see the majority of my fellow residents wearing masks. I felt safer than before. As death rates from the pandemic fell, I looked forward to eating at restaurants again — outside. of course.
Then D.C. began to reopen. Everyone interpreted the falling infection and mortality rates as a sign the virus had lost, and they could return to their normal lives.
On my daily excursions, fewer than half of those I passed wore facial coverings. When I approached a naked-faced guy on the sidewalk, I stepped into the street as he walked by, peering into his iPhone. On the bike trail, men dressed like they were in the Tour de France blew past me, huffing and puffing, without masks. In grocery stores, customers on line wandered too close, no doubt lost in their TikTok videos.
I needed new protocols to keep me alive.
On a call with a substitute oncologist (mine was on maternity leave), I asked for a plan. There was no national strategy, he explained. Then he rattled on about his own frustration. His kids insisted on going to the pool with friends. He was getting sick of takeout. More worrisome, he shared that patients with any history of cancer were dying from coronavirus at higher rates than others.
There are 16.9 million cancer survivors in the U.S. alone. Yet we weren’t on anybody’s radar screen. He counseled me to take precautions based on the best information I could get. Great. If I chose wrong, contracted coronavirus and croaked, it would be my own fault.
That was when I realized life had been easier with cancer. While I was battling it, there was a map of practices to follow. With COVID-19, I had no such GPS. Medicine offered nothing beyond hand washing and wearing masks. I could not even rely on the kindness of strangers. In fact, half the people on the street were trying to kill me.
Having dodged a bullet last year from “the big C,” I didn’t relish dying from a different C nobody saw coming. I had to take my safety into my own hands.
There are no pro-mask demonstrations. If there were, I couldn’t go anyway.
For me this meant doubling down on precautions, even those the CDC said weren’t necessary, like swabbing anything we bought with rubbing alcohol and washing all fruits and vegetables (even organic ones) in the kitchen sink. I bought triple-layer masks — one for every day of the week — with a space for a coffee filter and a paper towel. Going to a restaurant wouldn’t be an option until a vaccine was found. I assumed everyone outside was a carrier and cut back on biking. I reached for my spray sanitizer along with my keys when I left the house. It wasn’t enough.
Last week, Laura went to the dentist, who assured her they took the most stringent precautions to prevent patients from being exposed to the virus. Four days later, their office called to say that the hygienist who attended her had come down with symptoms and they were waiting for the test results. So the one I loved most, sleeping in my bed, could present the worst danger.
After 10 days of sweating, the dentist called to say the woman had tested positive. Laura has no symptoms, but now her doctor wants her tested. This is the limbo I will inhabit until a vaccine arrives.
There are no pro-mask demonstrations. If there were, I couldn’t go anyway. Instead, I’ve begun tweeting senate and congressional leaders to push for a coherent COVID-19 response strategy.
It’s galling to think that it didn’t have to be this way. Scientists started developing pandemic playbooks at least as far back as the Spanish Flu of 1918. But the way Trump handled the response to Covid-19 has left everyone stressed and in a 24/7 state of dread. Now I am the one sending love and prayers to Facebook friends who’ve lost loved ones to this scourge.
That’s why the most important part of my new roadmap might be still to come: I’m phone banking for Biden in the fall.
A HuffPost Guide To Coronavirus
Stay up to date with our live blog as we cover the COVID-19 pandemic
7 essential pieces of relationship advice for couples in quarantine
What you need to know about face masks right now
How to tell if you need to start doing online therapy
Lost your job due to coronavirus? Here’s what you need to know.
Parenting during the coronavirus crisis?
What coronavirus questions are on your mind right now? We want to help you find answers.
Everyone deserves accurate information about COVID-19. Support journalism without a paywall — and keep it free for everyone — by becoming a HuffPost member today.
This article originally appeared on HuffPost and has been updated.