Living in limbo land: Navigating health scares, medical uncertainty – opinion

‘You look pregnant,” my daughter Merav joked upon seeing my belly when my T-shirt rode up during a session of YouTube home yoga.

“That’s exactly how I feel sometimes,” I replied, even though I have no idea what it feels like to be pregnant. But my abdomen was bloated, round, and surprisingly shiny. It made it hard to walk and breathe, as it impinged on my diaphragm.

The bloating had come on too quickly to simply be a matter of overeating. Plus, I still had the same emaciated visage I left the hospital with a year ago – everywhere but my belly, that is.

My gastroenterologist tapped around my tummy using his fingers like a contractor inspecting a wall to see if it’s solid or hollow.

“I can’t tell if it’s distended from gas or fluid,” he told me. “If it’s gas, then I think you may have a small bowel obstruction as a result of your Crohn’s disease. Get a CT tonight. You may need emergency surgery, too.” 

Could be lumphoma, or heart, or kidney, or liver disease

He printed out a referral to the ER.

“And if it’s fluid?” I asked.

“Could be your lymphoma is back.”

My face fell.

“Or heart, kidney, or liver disease.”

Small comfort.

By sheer coincidence, I had a PET CT scheduled for the next day. That would tell whether it was cancer or an obstruction.

I went for the scan as planned, but the weekend was coming up, and my mind was spinning like our 30-year-old Maytag washer.

The choices in front of me were both rotten: surgery or cancer. An operation would be annoying, but it would probably resolve the issue fairly quickly. But with my chronically low platelets, my blood doesn’t clot well.

“You could die on the table,” my wife, Jody, said, giving voice to my worst-case monologue. (There’s a workaround: I could be given platelets via IV an hour before and during the operation.)

But if the cancer was back, would I even agree to do more treatment? This last year, which was supposed to be a “good” one with my lymphoma finally in remission, has been plagued with so many side effects, the thought of piling on more from additional cancer treatment that might not even work was not particularly appealing.

I was mired in limbo land, convinced I had only days, weeks, or maybe morphine-mediated months left to live. I stopped exercising – what was the point? For the next week, I barely left the house.

Jody asked me to write down my passwords for her. “Just in case.”

Ouch.

Life in limbo contradicts our Western “hurry up” culture, where waiting is greeted more with impatience than equanimity.

A report from the American Psychological Association, conducted during the COVID-19 pandemic, dovetails with my present-day experience. It found that 32% of Americans struggled to make even basic decisions, like what to wear, when everything feels uncertain. Some 49% said they found it impossible to plan for their futures.

Living in limbo imposes “a regimen of constant risk assessment,” notes Arthur Evans Jr., the APA’s chief executive officer. “Operating amid so much uncertainty compounds a general state of mental exhaustion.”

People who have been in similar situations report putting off social engagements, sometimes avoiding communication entirely because they don’t know what to tell people when they’re invariably asked, “How are you?” or tell you with glee, “You look good!”

Living in the grip of “When will the other shoe drop?” is not something human beings are wired well to handle.

On Sunday, after the weekend, I went back to my GI with the CD from the PET. He couldn’t tell if it was cancer, but he did say it wasn’t gas and I wasn’t obstructed. Probably “ascites,” the “abnormal buildup of excess fluid in the peritoneal cavity.”

Lymphoma was still on the table.

My hematologist assured me she’d look at the PET results before Wednesday, when she could discuss it during her weekly team meeting – reasonable from her end, but it just prolonged my torturous downward spiraling thoughts.

Redemption came at 9 pm by email. The PET CT was clear: There was no recurrence of cancer.

She then added, reassuringly, “I told you that if we could get rid of your lymphoma, I would fix everything else.”

A month later, after many additional tests – including several ultrasounds and an MRCP (an MRI of my abdomen), I did a second PET CT. Maybe there was something developing that hadn’t been there previously.

The answer, blessedly, was once again no lymphoma.

I next had a total of 5.5 liters of fluid drained from my belly via a needle and collection bag. That pointed more definitively to “portal hypertension” emanating from the liver.

My next step is a “transjugular liver biopsy,” where a tube, camera, and snippers are introduced via an artery in my neck, then threaded through the heart all the way to the intended organ, during which they’ll take an internal biopsy and measure any pressure that might be pushing fluid out of my blood vessels. This kind of procedure is much safer for someone like me than accessing the liver by surgery.

Scheduling the biopsy took another three weeks, during which time I was still bloated, low on energy, and getting a bit panicked as our family vacation overseas was just a few weeks away. I needed answers now and – if a final diagnosis could be made – treatment.

As the delays mounted, I found myself wanting to assign blame. Did my GI really have to play the cancer card with someone like me who gravitates toward dire?

In the meantime, limbo land reigns supreme.

My hematologist used to point out to her colleagues when I’d come to Hadassah-University Medical Center for checkups that I was her “walking miracle.”

I think a better description now might be her “moseying mystery.”

The writer’s book, Totaled: The Billion-Dollar Crash of the Startup that Took on Big Auto, Big Oil and the World, was published earlier this year as an audiobook. It is available on Amazon and other online booksellers in print, eBook, and Audible formats.

brianblum.com