Olaf Growald
Ten years ago, Marc Semmelmann was enduring intensive chemotherapy. He spent many of his days in a comatose state. He was most cognizant during the last two days of his treatment when the chemo was wearing off and the first two days before the chemo kicked in and pulled him under yet again.
According to his wife, Susan, Marc was in a “very low state.” He was fighting to survive. He slept endless hours, barely ate, and had severe mouth sores. Raquel’s Wings for Life, a local nonprofit, would fly him back and forth between Decatur and Houston for his chemo treatments at M.D. Anderson.
His treatment needed two IVs. The first one coated Marc’s veins and heart so they “didn’t get fried,” and the second pumped his system full of a chemo cocktail that included the “red devil” — doxorubicin, one of the most powerful chemo drugs ever created.
His nurse told him if it got on his skin, “it’d cause a third-degree burn.” His doctor told him “if the cancer didn’t get him first, the chemo might.” A few weeks prior, halfway through 2010, Marc found out that a rare form of cancer was attacking his body.
Earlier that year on the Friday before Memorial Day weekend, Marc sat in his orthopedic specialist’s office. It was almost 5 p.m. He looked at an X-ray of a cancerous tumor that was eating away at his pelvic bone. The tumor had been growing, putting pressure on his muscle, causing lower back pains.
At first, they thought it was bone cancer. Initially, Marc thought it was back pain. Having played football at the University of Texas from 1985 – 89, Marc knows the aches and pains related to sports, and this was different. This was more than a pulled muscle. The pain in his back made him restless.try sleeping on the couch, and when he couldn’t find comfort on the couch, he slept on the floor.
The chronic pain in Marc Semmelmann’s back hasn’t deterred him from dabbling in adaptive snowboarding.
Marc was 44. He was a go-getter, an athlete, a father, a husband. He had been married to Susan — his best friend — for 17 years. They’d met at Milo Butterfingers, near SMU, when Marc asked Susan’s friends to introduce them. They’d talked all night, and the rest was history.
The couple now had three kids, two girls (11 and 12) and a boy (9). Marc owned his own business, which he’d started in 2007. Things were going well.
Then, that March, he began looking into his back pains. Five doctors and two MRIs later, he found the answer here. In an X-ray of his pelvis, lit up with cancer. Oh. It’s cancer. What kind? Will I die?
By the time July came around, Marc was preparing for a 19-hour surgery at M.D. Anderson Cancer Center in Houston. Dr. Valerae Lewis, chair of the Department of Orthopedic Oncology, removed the cancerous tumor attacking Marc’s pelvic bone. She also removed part of his hamstrings, his groin muscle, and some of his stomach muscles. She then replaced his pelvic bone with a new one (from a female bone donor), and a plastic surgeon tidied up the new cavity in his right leg.
“It was as if they took a Folgers Coffee can and pushed it through the right side of my pelvis,” Marc says. “Everything in that coffee can went in the trash.”
The next day, Marc felt a stabbing pain in his chest. It was a double-pulmonary embolism, and the low levels of oxygen in his blood could be fatal. He spent 24 hours fighting to survive.
Two weeks after that close call, Dr. Lewis introduced him to Dr. Vinod Ravi, a medical oncologist at M.D. Anderson. Dr. Ravi specialized in chemotherapy. Marc was confused — he didn’t need chemo; he was supposed to start physical therapy and relearn how to walk. Then, Dr. Ravi gave him the news: “Son, you need to get your affairs in order. You have six months to live, at best.”
After slicing up the tumor that was in Marc’s pelvis, the doctors learned that the situation was worse than they thought. This wasn’t bone cancer. This was something different. Dedifferentiated chondrosarcoma, a rare cancer that attacks both bone and cartilage.
When cells are produced in the body, they’re meant to create something — like a fingernail. If the cell reaches the end of its specialized process, it’s differentiated; things are normal. If a cell is dedifferentiated, it morphs into something that it isn’t supposed to be. Something like cancer.
Aggressive cancer. Unpredictable cancer. Dedifferentiated chondrosarcoma is difficult because it’s rare (constituting 1%-2% of all bone tumors), and it can appear in various forms, making it hard to track down the cells that cause it. There’s little to no success in removing it from the body. This aggressive cancer always seems to come back unless the patient is undergoing intense chemotherapy.
Marc later learned that in other cases, doctors would “take the cancer out, then it’d show up again somewhere else, so they’d take it out somewhere else. Eventually, they’d get to a point where they couldn’t take it out anymore because you didn’t really have anything left of you to take out ... and you’d die.”
Olaf Growald
Marc and Susan Semmelmann
Marc wanted to know. What are the statistics? Has anyone survived?
“‘We’re not going to talk about any of that stuff. We’re going to talk about having a positive attitude, having a great support group of friends and family, and praying to whomever you may pray to,’” Marc recalls Dr. Ravi telling him. “‘Place whatever faith you have in whatever you have faith in.’”
Marc didn’t need to know the situation was so grim. He needed to focus on fighting to stay alive, against all odds. Hearing this “pissed him off at the time,” but with some reflection, he realized that Dr. Ravi was helping him in the long run. “These are really the three things that got me through,” Marc says. “Faith, family, and a positive attitude.”
That night, his mind was on family and faith, but he was far from positive.
“I was lying in bed, having an argument with God at 2 in the morning,” he says. “It wasn’t a nice one. I was cussing at him and hollering at him in my head.”
I can’t leave, he cried. I have a good wife, good kids. I haven’t finished raising them. I can’t leave my wife, my best friend, on her own.
While hashing it out with God, “a peace came over me,” Marc says. “The anger evaporated. The tears dried up.” In the quiet of the hospital room, he felt a sudden peace. “I didn’t hear a word from God, but it’s like he said, ‘You’re good; don’t worry about this. I got this.’”
Marc knew that Dr. Ravi needed to take him as close to death as he could to kill whatever cells were creating the cancer. “Instead of worrying about dying,” he says, “I knew my job was to survive as long as I could with chemotherapy.”
Over the next few months, Marc flew back and forth between home and the hospital multiple times with help from Raquel’s Wings for Life. Neither Marc nor Susan knew how long it would be before he returned home from a visit to the hospital. It could be four days; it could be 10. Once it was 15.
“At 21 days, you start the [chemo] treatment over again,” Marc says. “I’d get to make it home for about three to four days and then turn around and go back again. It was rough.”
While Marc was undergoing chemo at M.D. Anderson, Susan was trying to keep her head above water in DFW. She was managing both of their businesses, raising their three children, and taking care of Marc when he was home. On a normal night, she got two to three hours of sleep.
“She was losing weight, just like I was,” Marc says. “Her hair was falling out in clumps, just like mine, but hers was stress-related and mine was chemo-related.”
During his few days of consciousness, Susan would ask Marc as many questions as she could about his business. He would coach her, then she would carry it out, and wait for his next bout of clarity.
“I had to be faith-driven every day to withstand and have endurance,” Susan says.
One night around 11 p.m., as Marc was undergoing chemo treatments, Susan gave him a call. She was in the middle of a breakdown. She’d spent the day listening to her friends and family tell her that she needed to get ready for life without Marc; he wasn’t going to make it. The odds were too slim. The research she’d found herself sucked into online said the same.
She was stressed. She was tired. She sat down with all the cards he’d written to her throughout the years, bawling, and called Marc, hoping he’d tell her that everything would all be all right.
Instead, she heard him say two words: “Buck up.” It wasn’t what she wanted to hear. It made her mad. She hung up on him, but his words stuck with her.
“[His words] challenged me to show that I trusted I could do it,” she says.
There was no other option but to continue putting one foot in front of the other. In the end, she says, it was the best advice because it caused her to do just that — buck up.
Marc admits that “buck up” isn’t something he recommends any husband tell his wife in this situation. “I got in a lot of trouble,” he says. At the same time, he knew the toll the chemo was taking on his body. “I was trying to say, put on your boots and get ready for the ride as if I’m not here.”
He, too, felt that he was being tested. “I had [doubts] all the time during this process,” he recalls. “I would have to constantly remind myself of all the situations where I was given peace and comfort from above. Refocus my mind.”
After enduring chemotherapy for nine long months, Marc arrived at death’s doorstep.
“I was so weak and so frail that I couldn’t get myself out of the airplane,” Marc says. “On the drive home, I decided that I wasn’t going to do this anymore. If I did, I may not come back.”
When they stopped the chemotherapy treatments, Dr. Ravi told him he should prepare for the cancer to return within three weeks. A month passed and then a year. Marc visited the hospital every so often to check in.
Each time, Marc would ask Dr. Ravi the same handful of questions he’d asked on the day he found out he was dying. What are the statistics? How many survivors are out there?
Marc didn’t get an answer until 2013 on his third year of being cancer-free: He was the only known patient that hadn’t had the cancer come back within the first year. On his next visit in 2014, Dr. Ravi revealed that there had only been 455 cases of dedifferentiated chondrosarcoma to date.
Then, in Marc’s fifth year of being cancer-free, he learned even more surprising news.
“Dr. Ravi said, ‘I really thought I’d go from a 0% success rate to 20% success rate [after your case] ... but that hasn’t happened yet,’” Marc recalls. “He thought he had found the magic elixir with the red devil and some other concoction.”
But no other successes had come from the chemotherapy treatment Marc had gone through. Everyone else who had been treated for this cancer had it return within a year. Marc was five years’ cancer-free, and he wasn’t doing chemo. It seemed he was the first person who had fought this disease ... and won.
The intensive chemo caused permanent tinnitus in Marc’s ears, along with slight hearing loss. He says his new hearing aids help with the tinnitus, and he jokes that they’re great for when he wants to watch football in peace. He just turns the volume down to zero.
Neuropathy causes his fingers and toes to feel like they’re “asleep all the time”; another reminder of his chemo treatments. The annoying tingle has become a part of Marc’s daily life. Instead of complaining, he’s traded out his closed-toed shoes for flip-flops. They’re less painful for his feet.
“Complaining won’t change anything,” Marc says. “It is what it is … so you deal with it. Pain is just an emotion to me like happiness, sadness, fear. People overcome fear all the time by either controlling or conquering their emotions.”
This past January, he broke his right femur. Although the injury has changed his leg’s range of capabilities (his foot wobbles more now when he walks), he says he’s “learning to live with a new normal.” His solution? “Modify and adjust.”
He cliff jumps during family trips at Possum Kingdom Lake, and he’s learned to “adaptive snow ski.” He and Susan joke that he’s working on wakesurfing.
Since his battle with cancer, Marc hasn’t been able to run, play basketball, or any other “ball sports” like he used to. It’s a disappointment, but he’s used it as fuel to discover a new hobby — flying.
“There are two reasons I learned to fly,” Marc says. “To pay back what had been given to me and to replace some of the physical things I couldn’t do anymore with something different. [Flying] is physical, emotional, and mental gymnastics.”
Marc volunteers at Raquel’s Wings for Life, where pilots donate their planes and their time to fly cancer patients to and from M.D. Anderson. The organization pays for their fuel, and they never say no to helping a new patient. Marc, “the flip-flop flyer,” enjoys giving back.
“I get to share my story with [the patients I fly] and provide them with hope,” he says. “They see someone who’s survived and has a good attitude — not just someone saying, ‘You’ll get over it.’ I’m living proof that there’s hope. That makes a difference.”
In Marc’s opinion, hardship is temporary. It could be divorce, death of a family member, or a rare form of cancer attacking your body. To survive, you need to decide how you’re going to approach what’s happening. Are you going to give up, or are you going to believe there’s hope?
“I found that’s the hardest part — wanting to make the change in your mind,” says Marc. “Once you decide to make that change, it doesn’t make it any easier. It just allows you to refocus your efforts into something positive.”
There was a reason why Dr. Ravi had told Marc to focus on the positive. It’s easier to fight to survive when you believe there’s a light at the end of the tunnel, even if you can’t seem to see it through the darkness.
In the depths of chemotherapy, Marc’s whole focus was on getting through each moment. He withdrew, tucked inside his own head to survive and function.
During some of their most difficult days, it was Marc’s confidence that helped Susan combat the worries that swirled around her.
“Everyone else was saying that it wasn’t going to be okay, that I needed to check reality,” she says. “My reality was watching a man fight for his life, a man who knew in his heart of hearts that he was going to be okay. He just had to get through it.”
Unexpected moments when things shift from “okay” to “very not okay” can shake you to your core. A pain in your back reveals that you have a rare form of cancer, and it’s probably going to kill you. A global pandemic leads to a turbulent year, filled with spikes in unemployment rates, police brutality, and a pivotal election.
Your stomach drops. You try not to panic. You try not to scream.
How am I going to handle this?
Marc, the man who overcame all odds, speaks from experience.
“You need to replace fiction with fact. Take captive every single negative thought that comes into your mind: ‘I can’t do this. I’m not good enough. They don’t love me. I’m going to die.’ Replace all that with ‘I can do it. I am loved. I’m not going to die.’ Stick that in your head, and things will start to change.
“Remove the worry in your life and replace it with faith — trust that things are going to be okay, even when everything is against you. Like gratitude, your attitude is a muscle you work to develop, and it takes a conscious effort.
“When you wake up, don’t lie there and say, ‘I have to go do this,’ or ‘I have to go do that.’ Start out with ‘It’s going to be a great day.’ Tell yourself that you’re going to have a great day. Do it over and over and over again. Every day. Don’t let it be just a thought. Start believing it, and it’ll help you overcome.”
