A YEAR AGO Saturday, I left the hospital with a new anatomy and a cautionary tale to share.
During the last 17 months, I’ve made countless overnight trips to Seattle and undergone more than a half-dozen anesthesia-aided medical procedures, including major surgery during Thanksgiving week last year.
I stayed in the Lake Union neighborhood at the Seattle Cancer Care Alliance (SCCA) House, a well-appointed nonprofit hotel, thankfully run for the community of people like me.
I was diagnosed in July 2019 with gastroesophageal junction cancer. This is among the fastest-growing cancers in the Western population. It occurs where the top of the stomach connects with the bottom of the esophagus.
I don’t know how I got it. It grows from cells that make mucous.
In my case, a deeply ulcerated area covered about 2 inches of both organs.
I was in a Stage 2-3 netherworld where some cancer cells had migrated to lymph nodes.
Symptoms included stomach aches and an odd inability to fully belch. They were initially muted by omeprazole (brand name, Prilosec).
I am beyond fortunate that a physician assistant suggested an endoscopic procedure that pinpointed my problem.
Four months and four 48-hour chemo sessions later, I was bald.
By the second treatment, scads of hair were coming out with the gentle pull of a comb.
The surgery seemed strangely simple.
Over six hours, doctors removed most of my esophagus and about a third of my stomach through about a 4-inch incision at the midpoint of my rib cage.
They stretched what remained of my stomach to where they removed my esophagus, creating a kink, sort of a step, that still partially obstructs dense morsels including, sadly, salmon. And my stomach feels way smaller.
I spent a week in at the University of Washington Medical Center hospital with an IV pole loaded with monitors next to my bed.
My stay included three days of being unable to drink water or eat food, an NG tube winding through my nose and throat to my multipurpose stomach.
I was fed through a feeding tube, inserted near my belly button, that dangled from my skin. Initially a nurse checked my vital signs every four hours. I was always on my back.
I walked a mile a day, doctor’s orders — 19 laps around the unit, me and my stick-man buddy on wheels.
I was released Thanksgiving evening with a feeding-tube IV pole and a small backpack. It held bags of water and liquid protein. Mixed together and pumped through my tube, that was my main sustenance for six weeks.
After nine weeks at home, I returned to work, had four more chemo sessions and can work out again.
During the first round of chemo, neuropathy, a side effect I was unaware of, made my extremities tingle unbearably when cold. I could not touch ice or drink cold water. That’s gone now, but my feet still feel encased in padding.
During the second round, nausea was the issue, but I didn’t lose my hair. Sort of a fair trade.
I’ve lost 16 pounds, over 10 percent of my body weight, and still have a minuscule appetite, dulling one of life’s great pleasures.
Swallowing is annoying with every gulp.
My sixth endoscopic dilation is coming up for that. Doctors will expand the passage with an inflated balloon and see if the widening holds.
I sleep on a wedge pillow. Permanent GERD, y’know.
I am also alive.
I am in remission, though not officially cancer-free for four more years while I get regular CT scans.
And I am grateful.
Grateful for the love and caring of my partner Kim, who has been with me every single step of the way; for my steadfast mom, who was at my bedside and called me every day; and for the embracing support of family, friends and co-workers.
They sustained me emotionally and financially, drove me to and from Seattle on a moment’s notice, cooked me food, gave me gifts that lifted my spirits, including warm and stylish hats for my bald head, and checked and checked and checked on me.
Then there was the acquaintance who had been angry at me. He texted his good wishes, his hand outstretched. I am thinking his heart surgery and my cancer brought us together. Sometimes that’s what it takes for two people to get to a good place.
I feel guilty for not sharing this experience with you longtime friends with whom my main connection is Facebook. The reasons are more about me than anything else.
Symptoms of GEJ cancer, really any kind of cancer, make for an awkward what’s-new conversation.
Like other cancers, all of a sudden it was just there, in my face.
Would I end up in cancer maintenance mode or remission?
I know where I am now, but still don’t know where I will be.
It was difficult enough telling my brothers and sisters — especially because a genetic test revealed I have the BRCA 1 breast cancer gene.
It’s not all that odd for a man, I hear, and it puts me at slightly greater risk for that and other cancers.
That’s not so for my sisters.
If I am approached with questions about what’s going on with me, I am open about it.
That’s because things could have turned out so much worse had a physician assistant not had the presence of mind to go further than issuing a prescription for what ailed me.
People need to know that.
It all began with an annoying, recurring early-morning stomach ache and trouble burping, which I am unable to really do anymore. Carbonated beverages are out, too. All of them.
And I still have a chemo port, a dime-size nodule, implanted below my collarbone, sticking out, at the ready for at least another year in case cancer cells pay me a return visit.
But man, I’m alive.
________
Paul Gottlieb is a senior staff writer with the Peninsula Daily News. He can be reached at 360-452-2345, ext. 55650, or at pgottlieb@peninsuladailynews.com.
