By Sarah Breemer Pfennigs
“…The story of cancer — isn’t the story of doctors who struggle and survive, moving from one institution to another. It is the story of patients who struggle and survive, moving from one embankment of illness to another. Resilience, inventiveness, and survivorship — qualities often ascribed to great physicians — are reflected qualities, emanating first from those who struggle with illness and only then mirrored by those who treat them. If the history of medicine is told through the stories of doctors, it is because their contributions stand in place of the more substantive heroism of their patients.” ~ Siddhartha Mukherjee, The Emperor of All Maladies: A Biography of Cancer
On a clear fall day in 2013, Sam Coster and his brother Seth ran 4-½ miles around a lake in St. Louis. To both men, the run wasn’t anything out of the ordinary, although on a whim, they decided to make it a race. Sam bested his brother by 4 minutes.
The next day, a doctor would tell Coster – a computer game designer in his 23rd year of life – that he likely had cancer.
“I’d been feeling sick for about 2-½ months, and it started with me just being kind of irritated,” Sam remembers. “I’m a happy dude usually, so that was weird for me. We’d just come off of our first success as a game studio [Butterscotch Shenanigans] and we’d had enough of that success that it felt like we’d sort of ‘made it’. I thought maybe I was dealing with some sort of ‘postpartum depression’. You know, you send a big thing out, it kind of works. Maybe I was dealing with the ‘after’ of all that.”
Coster, who believes daily exercise and a good diet is a bridge to good health, ramped up his workouts and stuck to his daily grind. Then, over the next six weeks, the exhaustion set in. A full pot of coffee would give him approximately four hours of energy, but by 2 p.m. each day, Coster would find himself hitting a wall.
“I’ve always maintained that human energy is not a gas tank. It doesn’t just run out,” Coster maintains. “It’s what you put in on a given day. So, the next day, what you’re left with is your reserve. I’ve always thought if you’re feeling bad, if you respond with exercise, the next day you’re guaranteed to feel better.”
Instead, Coster was finding himself needing to take a nap every afternoon once the 2 liters of coffee wore off, and before too long, it wasn’t unusual for him to spike a fever upon waking.
“The fever would roll in about 5:30 p.m. and would peak with this sort of crazy, waterfall night sweat situation around 3 a.m.,” Coster says.
Still, as a very young man, Coster was quick to convince himself that although he was feeling badly, it was likely something reasonable: A virus, or maybe stress. Or worst-case scenario, Lyme disease. After all, it simply wasn’t logical or rational to assume something worse. Coster was barely into his twenties and in perfect health. But when he noticed swelling in one of his pectoral muscles and then discovered a lump underneath his left arm, Coster knew something was clearly amiss. He decided to appeal to his father, Dr. David Coster, who is a surgeon at Grinnell Regional Medical Center. After the elder Coster took a look at the photos his son sent him of the pectoral swelling and lump, he urged him to seek out a medical professional.
Running with the Lyme disease theory, Coster attempted to make an appointment with an infectious disease doctor in St. Louis, where he currently resides. Told he couldn’t be seen for three weeks, Coster requested a physician’s assistant (PA).
“In the week leading up to the appointment, I started to get a really bad feeling about this whole thing. I just don’t get sick,” Coster says matter-of-factly. “I had been dealing with this for too long and didn’t want to wait. Experience told me that if the you can freak the PA out enough, they’ll grab a doctor. So that was my goal.”
And that’s exactly what happened. After removing his shirt, Coster saw the growing alarm in the PA’s eyes, and before long, he had a physician in front of him, examining his anomalies carefully.
“Tumors have a particular feel to them,” Coster explains. “They’re kind of rubbery. A good doctor can usually tell by touch if it’s a tumor or something else. He said, ‘How old are you?’ and I told him I was 23. He basically told me he thought I had cancer and needed a biopsy immediately.”
Coster immediately thought back to the race he’d had with his brother the day before. How could he be a healthy, robust 23-year-old less than 24 hours ago and now be a possible cancer patient? Suddenly, Coster found himself at the mercy of both a biopsy and a PET scan (Positron Emission Tomography). A PET scan is more detailed than a simple X-ray – it actually can identify cancers based on the activity within the cancer cell. According to Coster, any cell that is rapidly producing gets picked up on screen and glows. The entire body is scanned and if cancer is present, it will light up in pockets of bright white.
“My whole body was coated [in cancer],” Coster says. “On the bones, on the liver, on the spleen…everywhere. Stage IV(B). The furthest stage you can be before you’re not in existence anymore.”
Coster, like many of us, had often heard that when an individual receives the kind of catastrophic news he did that day, the common reaction is to feel numb. Yet, he didn’t feel numb. Or angry. Disbelief was probably most accurate. After the shocking diagnosis, Coster chatted amiably with the medical receptionist about her weekend, wished her well, got into his car and promptly lost it. The breakdown lasted four minutes – a countdown Coster knows is accurate because he had nothing else to look at except the digital readout on his dashboard. The crying eventually turned into hysterical laughter. Again, the absurdity of the diagnosis was resonating with him most profoundly.
“The diagnosis was strange,” says Coster. “I was 23 and in really, really good health. It was actually ridiculous. In every sense of the word. Ridiculous.”
Coster had to immediately brace himself for what his diagnosis actually meant. Cancer is not a simple disease. There are intimidating stages, confusing names, marker genes to consider – just to name a few of the mysteries Coster had to lasso. The week of waiting for answers to questions like ‘What kind of cancer is this?’, ‘What stage is it?’, and ‘What’s the treatment protocol?’ proved to be hellish for Coster and his family.
“During this week, we were paring down what was going to be happening for the next while,” Coster says. “You’re finding out what your chances are. The uncertainty is just the worst damned thing.”
The answers were intimidating: Coster had aggressive Enlarged T-Cell Rich Large B-Cell lymphoma, which is categorized as Non-Hodgkin’s, a cancer that has a lower cure rate than Hodgkin’s. His lymphoma was also categorized as stage IV(B), another devastating blow. According to the American Cancer Society, “B” categorization cancers have symptoms that “A” cancers do not, like the night sweats and fevers Coster was experiencing before his diagnosis. Unfortunately,“B” cancers are also usually more advanced.
The fear that the cancer might be expressing the c-Myc gene was also on the table. If a cancer expresses c-Myc, it’s more resistant to chemotherapy, and half of cancers carry the gene. Fortunately, Coster’s cancer did not express c-Myc, which was a much-needed piece of good news.
“It was just bad news after bad news that week,” Coster remembers. “Finding out that there was no c-Myc was finally something to hold on to.”
Coster chose the Siteman Cancer Center in St. Louis to begin his treatments, which were outpatient. A port was installed under his skin and threaded into an artery that goes into Coster’s heart. Six hours later, his first round of chemo was done.
“The first day you feel fine,” Coster says. “On day 5 you start feeling really tired. Days 5-10 you feel…slow. Chemo is cumulative in its effect. I don’t want to slow down. In my mind, when you start to slow down, you continue to slow down. The first round of chemo? Not so bad. The sixth time? You’re tired. You’re literally bone-tired.”
After Coster finished his last round of chemotherapy and endured two hospitalizations for high doses of methotrexate (a drug that helps prevent the spread of cancer), the waiting game resumed. The rules of that game are intense: If a cancer patient makes it to a year without issue, they’re considered to be in remission. At year 2 with no issue, the patient is considered “soft-cured”. Once a patient makes it to year 5 with no incidents, he or she is considered cured. Coster had a ways to go.
In March of 2014 as Coster was in the midst of restructuring his life, he was blindsided by another glowing PET scan.
“There were three nodes lighting up in my armpit again,” Coster says. “Or, as I like to refer to it, the Center for Diseases Out of Control.”
Coster was feeling good – great, actually – and experiencing none of the symptoms he was presenting the first time. Nevertheless, an actual physical test for cancer needed to be performed, so five core biopsies were administered.
Three of the cores – actual samples of the suspicious tissue – were sent to a genetics lab. The other two cores were sent to pathology. What resulted was an entire month of limbo and what Coster describes as his “lowest point”.
A week after sending the cores, pathology came back and reported no cancer. The relief was short-lived, when only 15 hours later, the genetics lab came back with bad news: Cancer was present. A cyclone of confusion and anxiety ripped through Coster’s recently rebuilt house of serenity.
“A month,” Coster remembers. “A month of uncertainty and limbo. It wrecked me.”
However, at the end of the month, it was determined that the cancer had not returned. A week before getting the all clear, Coster proposed to his now fiancee, Diana Zeng.
“She had said, ‘Even if you’re gonna die in a year, I want to be married to you before you go.’,” Coster says.
Fast forward to almost a year later: In December of 2014, Coster and Zeng took a vacation. In the shower on that first night, Coster found a lump under his armpit. He called his doctor right away who told him he would check the lump thoroughly at Coster’s appointment in February, but for now to enjoy his vacation and January. The waiting game began anew.
“My chest was swollen again, so I knew something was up,” Coster says.
A PET scan in February 2015 revealed that the cancer was everywhere again. Coster was forced to find meaning in this newfound assault on his life. He recalled when he first returned to work after chemo and took a long, hard look at what he was creating. The game he’d been working on before he got sick was a self-described “copy and paste” of material Butterscotch Shenanigans had already done and what the market was producing currently.
“I turned to Seth and said, ‘I don’t want this to be the thing I make if I’m going to die.’,” Coster recalls. “We stopped production on it and began creating the game we’ve been working on for a year now, Crashlands. So, with the first go-around with cancer, I was able to say, ‘Yeah, I got cancer, but it gave me an incredible fiancee, Crashlands, great perspective.’ The second time? Well, there’s no drastic shift to be made. It’s harder to carve out meaning.”
Coster is definitely finding meaning, however, in his advocacy for Be The Match, which helps find bone marrow matches for patients in need. Coster himself will be depending on a donor once an autologous stem cell transplant occurs and BEAM chemotherapy is administered. The stem cell transplant will actually come from himself, and the process is very similar to what a donor goes through via peripheral blood stem cell transplantation: The blood is removed from one vein and passed through a machine that separates the stem cells, which get used later. The blood – sans stem cells – is then returned through a needle in the person’s other arm. He’ll get those salvaged stem cells back when he completes the BEAM, which is an intensive, 6-day onslaught of chemotherapy. It will wipe out his bone marrow and his immune system completely.
“I won’t have the ability to produce blood and will be getting transfusions,” Coster says. “It’ll kill my intestinal lining. I will feel bad.”
Which is why Coster has determined to get into the best shape in his life before entering the transplant phase. After observing his brother [Seth] commit to a 13-week intensive exercise program, Coster decided to join him. Although he’d maintained his workouts throughout his battle with cancer so far, Coster hadn’t changed anything about his methods or approach. The idea of becoming his best self before doing battle made perfect sense to him.
“I sort of have fun subverting people’s expectations of how I’m supposed to be acting or feeling,” Coster admits. “I want to be as physically strong as I can before going into this transplant situation for two reasons: One, exercise causes the hormone that allows bone marrow to produce a lot of blood to be high in your bloodstream, and secondly, the whole reason I’m getting the transplant is to be able to get the BEAM, and that’s six days. I probably won’t be able to eat, so I’ll be melting a bit. It would be kind of hilarious if I came out of this whole thing and people were totally confused because I was physically enormous.”
All in all, the treatment is 3-fold for Coster. He just finished the three (3-day) courses of chemotherapy. The cure rate for that is extremely low. The self-transplant will occur in August, followed by the BEAM, which has a cure rate of about 25%. Should all go as planned, Coster will then get a stem cell transplant from a donor, once he’s found a match. Currently, he has 3 potential donors waiting in the wings. The cheek swab and initial signing up for the registry is just the beginning for donors and recipients. Once a donor meets the basic match needs, a blood draw is administered, and there are 16 different markers to check for if it’s a true match. The immune systems have to be exactly the same.
“When someone gets BEAM and then a donor transplant, they no longer have any of their own immune system or their own blood,” Coster explains. “In my case, I’m doing tandem. It jacks up the cure rate and lowers the chance of getting graft vs. host disease. What happens with that is when you get someone else’s immune system and it’s not a perfect match (and sometimes even when it is), the new immune system will sometimes try to kill you. I’ll be getting ATG, which is a pretty cool and crazy drug that essentially weakens your immune system – so much so that it allows my donor’s immune system to come in and live side-by-side with mine. It gives me a much higher chance than just doing the autologous by itself.”
Sitting across from Sam Coster, it’s almost difficult to believe he’s sick. Despite having a smooth head from the chemotherapy, he’s clear-eyed, strong-bodied, and full of humor. He lights up when he talks about his family and friends, Butterscotch Shenanigans and his October 2016 wedding to Diana.
“One of the weird things about having cancer, especially if you’re happy, is the perspective shift,” Coster muses. “It’s extremely valuable. People complain about a lot of stuff on a daily basis. If you’re complaining about a photo on your phone loading too slowly or your latte being a little bit cold, you need to take a step back. That’s the thing about cancer. You lose the ability to give a [expletive] about things that don’t matter.”
“People project their sadness on to you,” he continues. “They’re sad at you. I appreciate the empathy, but I don’t feel that way and I don’t want other people to feel that way, either. I had someone ask me, ‘How are you so happy?’. Coming from someone who doesn’t have cancer, you want to turn it around and say, ‘How are you NOT happy?’.”
From the photos taken of Coster at the end of the interview, you might think he’s talking about the day he was diagnosed, or perhaps the treatments that await him. But if you look carefully at his eyes and his expressive hands, he’s not.
He’s describing the incredible beauty of the place he’ll marry Diana.