Chronicles from the Chemo Bar: Not this time, Cancer. (an oh-woe-is-me pity party? oh hell no.)
A little background…
The third week of October, 2021 was certainly, well, rather interesting. I was juggling schedules to make sure the roofing crew was done so the concrete guys could start ripping out and replacing the driveway in time for it to dry so we could get a car back into the garage before leaving for an annual health screening in Pittsburgh. Sometime during that week, on top of the construction consternation, I got poison ivy, was prescribed bifocals and lost a credit card. The next week was a bit more, well, interesting. On our road trip, I was pulled over near Davenport for not signaling a lane change, got a speeding ticket in eastern Indiana, suffered a bit food poisoning in Indianapolis, learned our usual hotel near the medical center had no record of our reservations and then to top it all off, the next day I got diagnosed with pancreatic cancer.
That really wasn’t a surprise. Pancreatic cancer killed all my immediate family: my grandmother and at least two of her sisters; my mother and her twin sister and then their brother; and then my brother.
During one of the last conversations I had with my brother he said, “Do not let this happen to you.” He died a week later. I never thought it would take him. He was my Superman. And me? I figured I was invincible. In truth, so naïve. I had been ignoring or at least avoiding the inevitable.
Reality then took hold. It was quite likely pancreatic cancer was coming my way.
Two thoughts crossed my mind. “If I get it, I get it,” which I immediately tossed out primarily because I didn’t want to die. There’s so much more life to live and so many laughs yet to laugh.
My next thought made sense and has guided me ever since. Like the rest of my family, I carry a gene that has made us predisposed to pancreatic cancer. It opens the door for this killer to just walk right in and start to take every bit of life away.
But it doesn’t have to be that way I thought. If they find that gene, maybe it can close that door, lock it and keep the cancer out and save a lot of lives.
A scientist I am not. A positive, wishful thinker I am.
I started seeing a local oncologist for annual CT scans but soon realized that my thinking that cancer is cancer was rather foolish. Pancreatic cancer is a monster unto itself. In those days there just wasn’t a lot of research going on. But I set about to find a specialist. And I soon found one. Not just a specialist in pancreatic cancer, but a specialist who was doing research in pancreatic cancer that runs in families.
I went to Chicago to meet with him and got accepted into his study that involved annual ultrasound endoscopies to check out my pancreas, collecting tissues and secretions, and blood and genetic tests.
I had my first tests with him more than 25 years ago. And I have had one every year since, minus the COVID year.
Along the way, the doctor relocated to the University of Pittsburgh Medical Center. And of course we went with him. Why mess with a good thing?
Following my exam in October 2021, the doctor came into the recovery room a bit tearful. “You have cancer.”
Three words I didn’t want to hear but fully expected I would one day.
I never really knew how deafening silence could be until that moment. It’s very loud.
But it was the moment we had been preparing for. As hoped, the cancer was detected early while the tumor was small and before it started to spread. That’s the thing about pancreatic cancer, it’s a sneaky son of a bitch. More often than not, once symptoms start to surface, it’s too late. Chances for survival are slim. At best.
I was in the right place at the right time. I met with a surgical oncologist two days later. He explained that due the early detection, the tumor could be removed completely and would be done robotically which is less invasive and has a faster recovery time.
And then he said, “I fully expect you to be cancer free when we’re done.”
I asked him to repeat that. Twice.
Surgery was scheduled for 10 days later. And the surgeon was right. Recovery wasn’t too bad.
The worst part: I had to share a hospital room with the loudest snorer in the whole world. For a whole week. More drugs please and SHUT UP! Nice guy, bad roommate. So annoying.
But so what. Cancer didn’t win this time.
After a couple of weeks recovering I came back to Des Moines to start 12 rounds of chemotherapy, mostly as a preventative measure. While the surgeon was confident he removed all the cancer, he just wanted to make sure that if any cancerous cell swam away to plot revenge, this would take of it. I called it, “Clean Up in Aisle 9!” after an announcement I had heard at a local grocery store.
While meeting with the oncology team, they explained the whats and hows and whys which I heard as “blah, blah, blah.” Details. I just wanted in and done. The potential side effects part though, I heard loud and clear. Especially the explosive diarrhea one. Yikes. Thankfully, that never happened but I sure had plenty of supplies just in case. FYI: Depends are not stylish or comfortable. While I didn’t need them, I had bought some and simply had to try a pair on. I would have done my spot-on impersonation of Tom Cruise’s underwear dancing from “Risky Business but it was too soon after surgery. I didn’t want to pop a suture. I’m very glad I didn’t need the Depends, primarily for the reason that would have needed them. Other side effects? Of course! And still do. Once again: so what. Cancer didn’t win.
Towards the end of the meeting, one of the oncology nurses asked if I’d a like a port, which I thought was odd.
“No,” I said. “I’d really prefer very dry chardonnay.”
“Not that kind of port. One we’d implant into your chest for the chemo rather than IV needles and tubes.”
“Oh. Yes please.”
It’s a pretty slick system. Just lay back and say, “ahhhh!” and they pour the stuff into you. It’s good for blood tests and the drugs and doesn’t hurt a bit. It creates this nickel-sized bumped under your skin, rather like a badge of honor. I wore it proudly for nearly nine months.
During my chemo time, I kept a journal of my experiences in the infusion room, that I immediately and affectionately renamed the Chemo Bar with the tag line, “Where the drinks are strong, the service is swift and no tipping is allowed.” And it was where I formed a forever bond with a group of folks going through the same thing. We met as strangers, skipped right over the friends part and became a family. Whereas Robin Hood has his Merry Men and Ken Kesey had his Merry Pranksters we were the Cool Kids on Chemo, the coolest cats in the Chemo Bar.
I’m thrilled to have found Substack. It’s seems like an ideal place for these journal entries that I’ll post periodically under the heading: From The Chemo Bar… (Snappy, huh?)
And please understand this right now: this isn’t going to be an oh-woe-is-me pity party. Far from it.
Don’t get me wrong, chemo sucked. But it didn’t totally suck. Would I want to go through it again? Oh hell no!
As Nana Mangia, the matriarch of the Cool Kids on Chemo, would say, “What? You crazy?”
Grab a seat and belly up the Chemo Bar. The drinks are on me. No Folfirinox or Oxaliplatin for you! Just fruit juice and Pepsi. No worries of explosive diarrhea and your hair won’t fall out.
CAROLINE.
While getting my fill at the Chemo Bar, nature called. That’s one thing you learn about chemo very early. What goes in, very often comes out with a vengeance. One way or another.
I dashed out the door roiling my portable IV stand with the bags flapping in the wind and I damn near collided with my brand new friend Caroline who too was racing to the restroom at the end of the hall---also transporting her cocktail containers. There was one other restroom in the middle of the hallway but I was a quick learner: if the door is closed for more than five minutes, move on. The ventilation is not very good. At all. Chemo is okay going in, but coming out well, pleasantly perfumed it is not.
“Excuse me. Go ahead,” I told her. Even cancer couldn’t erase my gentlemanly ways.
“No you.”
“No you.”
“No you.”
“No you.”
“No you. I think you need it more than I do,” she said.
“Oh really? How?”
“You’ve got that panicky look in your eyes and you’re kind of doing what we call the potty dance.”
Awfully perceptive she was. Her eyes, while trying to twinkle through tiredness, were incandescent with kindness; her head was wrapped tightly with a scarf.
I asked her if she had a sense of humor.
“I do. And going through this it does help.”
Helps? It’s an absolute necessity.
I reached in a pocket and pulled out a button I made just for this type of situation and handed it to her.
“I don’t have my glasses. What does it say?”
“Hairstyling by Chemotherapy.”
“It does not!”
“Yes. It does.”
Caroline let out a laugh so loud that her surgical face mask ballooned out and just about everyone in the room turned and stared.
“Can keep it? I love it!”
“Of course! And these too,” I said handing her a few more humorous buttons. It’s true. That laughter is the medicine thing.
“Hurry up and go to the bathroom already,” she barked “I’ve got to go.”
“You first.”
“No you.”
So off I went.
About 45 minutes later I was off to the restroom. Again. Born Mr. Busy Body, I looked in every room along the way. And there in #5 was Caroline, sitting on the edge of the bed waiting for a ride home, bedazzled with her new buttons.
Just as she waved at me a nurse rushed into the room with a very important document.
A Certificate of Completion.
Today was Caroline’s last day of chemo.
The smile behind her surgical mask was easy to see without being able to see it, and her eyes were twinkling bright through the tiredness and tears.
“How much longer for you?” she asked.
“This is my first treatment. Only 11 more. Almost done!”
With one treatment ever other week, in less than six months I would graduate and get my Certificate of Completion. Well that’s like a blink of the eye.
Always the optimist.
And so what. Cancer came. We fought.
I won.