Cancer_Survivor

What It’s Like to Live Beyond a Death Sentence

With Stage IV cancer, chances at survival are slim, and miraculous cases (like Alex Trebek’s) are rare. Men in remission tell us about staying strong when every day is a bonus

Earlier this year, Alex Trebek was handed a death sentence. The 78-year-old host of Jeopardy! was diagnosed with Stage IV pancreatic cancer after tests revealed a fist-sized tumor on his pancreas.

For the roughly 50,000 Americans diagnosed with Stage IV pancreatic cancer this year, the diagnosis is considered fatal; Trebek himself was given a 9 percent chance of survival. But in late May, he announced his tumor had shrunk by 50 percent and he’d entered remission.

“It’s kind of mind-boggling,” Trebek told People. “The doctors said they hadn’t seen this kind of positive result in their memory … some of the tumors have already shrunk by more than 50 percent.”

Trebek later joked in a speech at the Daytime Emmys that he “a 30-day survivor,” and that he planned to catch up to those who’ve survived for 10, 12 and 14 years. Once diagnosed with cancer — even if you go into remission for a decade — there is always a chance at the cancer will return.

Especially with Stage IV cancer, or “advanced cancer” that has spread to other vital organs in the body, chances at survival are slim. Still, people do survive — at least beyond their initial prognosis — and two such men shared their stories with us.

Jonathan Walter, 34, Canal Fulton, Ohio

I’ll do my best to keep this concise, but I tend to be long-winded, much to my wife’s chagrin. It started back around early 2012. I was married, and work was bartending and part-time music gigs in bars. I started noticing pain in my right hip and leg. [I was] on my feet the majority of my working shifts. This was beginning to be an issue I couldn’t ignore. Luckily I had some insurance coverage through my wife’s work. I started seeing a family doctor at a local practice in Cuyahoga Falls. He was a new doctor and I was one of his first patients. He ran a gamut of tests, and came to the conclusion that I was suffering from sciatica. I was given weekly shots (in my buttocks), and started seeing a chiropractor.

The problem persisted and I was frequenting the ER for pain at least once a week. My marriage started to fall apart as she felt I was simply seeking drugs. I won’t lie, I was taking everything I could just to get through the day. I was on (prescribed) Percocet, and getting extra from co-workers. I was drinking constantly and smoking marijuana whenever I could.

I did what I could do to numb the pain that was driving me insane. It was keeping me up all night. I literally could not even sit still or stand without shaking and suffering. For all of that, my doctor stuck by sciatica.

During the later half of 2013, everything came to a head. In that six-month period of a deadly secret growing inside of me, I lost my father to cancer, I was sexually assaulted by my manager at a co-worker’s wedding, my wife cheated on me and left me for another man, I lost my job, and I was still in So. Much. Pain.

I decided in a desperate moment to try to end it all. I’m not proud of it, and the decision haunts me to this day.

Fate dealt an interesting twist that day, though. I wrecked my van, but I pulled away at the last second, having doubts. I still had to go to the hospital for physical and mental evaluation. That’s when the X-ray technician saved my life. The X-ray tech, of all people, took one look at my first scan and called in for backup. I had Stage IV lymphoma throughout my entire body. I actually laughed when I got the news. It was almost a vindication of the last 18 months. The doctor told me that had I gone another few weeks or a month or so, there really wouldn’t have been any chance for survival.

I was given a second chance. I was given the opportunity to live by facing death.

I cannot stress the amount and type of pain that one experiences here. It’s like you have X-Acto blades imbedded in your bones. Every time you put weight or pressure of any amount on that area… I remember so many times just seeing red. So much pain I literally could not see or hear or use any of my other senses. All I could “see” was red and bright-white heat.

The pain starts at “ground zero.” This spot is always active. It may not always be a 10, but at its weakest, you’re still aware of it. Sometimes you’ll have a pain that’s constant, but you can kind of ignore it. Ground zero will not be ignored. It is always there to remind you something is wrong. It spreads from there. The pain reaches out like a plant reaches for sunlight. It spreads along and the violent sensations it carries pulsate down their path. It really does have its own “pulse” or rhythm that it pumps to. Again, varying degrees of pain at any time, from 3 to 10, but at least these tendrils were semi-manageable. Medication, heat, cold, massage, walks, stretching, anything. Anything that works even a little is better than nothing.

Once the initial scans showed signs of cancer, we had to figure out if it was legit, and if so, what kind it was. The waiting… oh, god, the waiting. So many tests and biopsies. And double-checking biopsies because they don’t want to take more than they have to, but if they don’t get a good sample they have to go back in for more. Then they have to make sure they are able to get all the info they need on me and the cancer so they can figure out the right treatment.

I initially started with the basic ABVD chemo. It’s not the roughest in the world by any means, but it’s a hell of an introduction! My treatments were fairly non-volatile. I had an internal chest port to keep my veins and arms in good shape and protect them from constant needle access. Nausea, fatigue and chemo brain were my biggest symptoms. It’s hard to feel like you’re losing yourself in strange new ways. I’m naturally svelte, and it became even more difficult to maintain weight. I was wasting away and struggling with fatigue and strength loss from treatment on top of malnutrition. Basically, you feel like crap on two legs! The forgetfulness was twofold. I would be absentminded in the moment, forgetting why I came into the room, or lose my train of thought mid-stream. I would also forget details or memories. This made me feel unreliable in a way I wasn’t familiar with.

At first, I really wasn’t scared of dying. Everyone was very positive and excited about my prognosis. Hodgkin’s lymphomas are supposed to be “the good cancer” to get because they have something like the highest success rate with treatment.

Unfortunately this has not been the case with my situation. Since starting treatment in January 2014, I have had around six different types of chemo and/or immunotherapy, and two stem-cell transplants.

My first transplant was donated by myself. They essentially take a stem cell from you. Then they blast you with “super chemo.” It kills the cancer and pretty much everything else. It resets your body to having nothing. Then the doctors used my stem cell to restore my body to “factory reset.” It’s like my immune system and all my genetic info was reset to a newborn. Any immunizations, vaccines, white blood cell memory… all gone! It was meant to hopefully reset my system back to when I didn’t have cancer cells to grow. It did not work. The next option was to do the same thing again, but this time use someone else’s genetic info because evidently mine is shit.

The transplant was mostly successful. While the cancer eventually came back, I had the longest remission I’ve experienced yet — at just around one year.

Now that the cancer is back, my treatment is based out of the immunotherapy camp and is pretty revolutionary for the moment. They are able to create a link for the medicine cells entering my bloodstream to actually lock onto, and specifically target the cancer cells. Currently, cancer treatments are like buck shot. They go into the body and tear shit up and that’s part of why people react so poorly to chemo and other treatments. This new procedure allows for fewer and less-impactful side effects for the patient. It’s still not a walk in the park, but it’s better than even AVBD.

My team remains positive and hopeful, but I feel like reality can be faced. The cancer is here to stay, at least for as long as I am too. I’m going to keep fighting it off and working with my oncology team to make the best treatment plan possible. I guess I realize I can accept that the cancer will probably eventually be what kills me. It doesn’t mean it’s going to be anytime soon, but it’s not giving up. I don’t plan on ever giving up, either. I have two amazing kids who mean more to me than words could ever describe. I now have the love of a wife who will have my back even when she’s furious with me. She and my kids are an inspiration to me that life is something that we should marvel at and be grateful for.

Life can be fucking crazy in so many angles at so many times, even life-threatening, we just need to take a step back. Perspective and time and really make all the difference. For all the years of treatments and procedures and surgeries… what sticks with me the most is how people showed who they really are. When things get at their worst, you’d be amazed at the ones who disappear and the ones who show their capacity for love and compassion.

Ben Quesinberry, 39, Northern Arizona

The headaches began sometime around October 2015. I had to buy a recliner to sleep in because lying in bed increased the headaches 100-fold. Even in the recliner, I would wake up crying out because of the pain. My primary care physician kept saying it was “stress” due to my new job. I kept telling him I wasn’t stressed. Six months later, my wife convinced me to see a neurologist, who ordered an MRI.

A couple weeks later, I was in surgery to remove what turned out to be nasopharyngeal squamous cell carcinoma, a skull-based Stage IV cancer. After surgery, the neurosurgeon told my wife I’d be dead within five years.

Fast-forward nearly four years. I’ve undergone six surgeries, three rounds of chemotherapy and 47 days of radiation therapy. It’s been the most physically grueling roller coaster; one month I’m skateboarding with my friends and the next I’m back in the recliner recovering from a surgery or treatment. That said, my wife and kids have had the hardest job through all of this.

I’ve watched my kids as they wonder if Daddy is going to die. No kid should have to think about that. I’ve watched my wife wonder the same thing while providing care for me, shuttling me to appointments, keeping our house running and homeschooling our children. I can’t imagine how hard it is to try to be a wife when you have to play the part of nurse too. She’s endured things a wife shouldn’t have to.

In February of 2019, I lost vision in my right eye. In March, my oncologists said that my illness is terminal and that I could expect to live “months to years.” In April and May, I had my fourth through sixth surgeries, yet a tumor remains on my right optic nerve and carotid artery. Any additional radiation would likely lead to a stroke and, regardless, “wouldn’t be curative,” according to doctors.

Today, I walk around knowing that I could die this year, but I’m at peace with it. I have been from day one. Yes, I’ve cried and I’ve been sorrowful, but not for myself. I placed my faith in Jesus Christ years before I was diagnosed with cancer and I know I’ll be in heaven the day I die, whatever day that may be.

The only time I cry is when I think about the pain that my wife and children will suffer if this cancer does kill me. My kids are 5 and 7 years old and I feel like they should have a dad, but I can’t pretend to know more than God. The Bible teaches that God is not distant but is close, sovereign and good. Since I truly believe that, I know that his decisions are perfect and that good will come from my sickness and, possibly, my death. Until that day comes, I’ll continue to be dependent on God for this supernatural peace that surpasses all understanding.