Friday, March 22, 2013
To treat his soft tissue sarcoma, 50-year-old Ron Kraemer chose Memorial Sloan Kettering for care and support that could keep him playing music and working as a personal fitness trainer.
Ron Kraemer was 50 years old and living in Sarasota, Florida, when he found a lump on the right side of his chest. It was the spring of 2010. He didn’t know it then, but his two careers – leading a jazz/blues band and launching a business as a personal fitness trainer – were about to come to a hard stop. And there was a chance that he would never be able to engage in either activity again.
Because the lump “didn’t hurt and wasn’t having an impact on me in any way,” recalls Ron, ”I just kept an eye on it – much the way I would for a muscle bruise, which is what I thought it was.”
But that August the lump became inflamed after he played just a few rounds of golf. Ron saw a specialist who gave him alarming news: The lump might be a soft tissue sarcoma.
Only about 1 percent of people with cancer have this type of tumor. It arises in soft tissues of the body such as fat, muscles, nerves, tendons, and blood and lymph vessels, which connect, support, and surround other parts of the body.
Ron’s doctor told him he should go to a place where they treat this disease on a regular basis, such as Memorial Sloan Kettering Cancer Center.
“The seriousness of my situation really sank in when my doctor asked me how quickly I could get there,” Ron says.
A Drive, a Diagnosis, and Surgery
Luckily, Ron’s parents were still living in his native New Jersey and he would be able to stay with them. He drove up the East Coast. Several days and 1,200 miles later, he met with Carol Morris, a Memorial Sloan Kettering orthopaedic surgeon who specializes in treating soft tissue sarcomas.
“Because my doctor in Florida said that only a biopsy could confirm what he suspected, I was concerned but not panicked during the drive,” Ron says. “And even if it was cancer, I figured they could pop the thing out of my chest, stitch me up, and send me back to Florida. The harsh reality really only hit me in Dr. Morris’s exam room.”
The biopsy that Dr. Morris performed on the day of Ron’s initial appointment revealed the presence of a high-grade myxofibrosarcoma, a common subtype of soft tissue sarcoma that begins in the fibrous tissues that hold bones, muscles, and other organs in place. In Ron’s case, the tumor in his right pectoralis (chest) muscle had grown next to the major nerves and blood vessels supporting his dominant arm – a serious concern for a man whose career required excellent function in that arm.
Three days after their first meeting, Dr. Morris removed 80 percent of Ron’s major and minor pectoralis muscles on the right side. She explained that he was likely to have physical limitations after the surgery. But his band and his work as a fitness trainer proved to be powerful motivations for him to restore dexterity and strength in his right hand and arm.
“I started stretching soon after surgery with the goal of getting back to where I was,” he says.Back to top
Radiation Treatment Close to Home
The pathology report showed that Ron’s tumor had been completely removed. But because of its location and size, Dr. Morris recommended that Ron receive radiation therapy, which uses high-energy x-rays and electrons to kill any remaining cancer cells.
So he could stay with his family, Ron decided to have this next phase of his treatment at Memorial Sloan Kettering’s facility in Basking Ridge, New Jersey. Ron received state-of-the-art radiation therapy delivered by a team that included a radiation oncologist, medical physicists, radiation therapists, and nurses.
Radiation oncologist Karen Schupak, Chief of Basking Ridge Radiation Oncology, designed an intensive regimen that targeted external-beam radiation to the region where the tumor had been. The plan required Ron to undergo six weeks of therapy, five days a week.
“Ron had an extremely complex course of treatment,” Dr. Schupak says. “Radiation of any soft tissue sarcoma is very challenging. The doses necessary to get good tumor control have to be planned and applied carefully because of the proximity to vital structures.”
As the weeks went by, Ron found radiation to be increasingly difficult to tolerate. “The effects accumulated over time,” Ron says. “It’s like getting a really bad sunburn — again and again.”
When he finally rejoined his band on stage in late January 2011—approximately ten days after his final radiation treatment—it was a “nightmare” from a physical perspective, he says. The damage to his skin caused by the radiation had not yet healed. “And because I’d lost the chest muscles on my right side, I was also placing the guitar directly on my ribs. It hurt!” Ron explains.
However, Ron was thankful that his doctors agreed to let him play so soon after his treatment ended. “I was back in my element, and that felt great,” he recalls.Back to top
His Own Best Trainer
One side effect of the surgery that Ron has experienced is lymphedema, a condition in which extra lymph fluid builds up in tissues and causes swelling. “Proper diet and exercise help take the struggle out of it,” he says, and he has regained full range of motion in his right arm — and much of his strength.
“It’s been almost a year and a half since I finished radiation treatment,” Ron says. “I spent over a year doing nothing but walking my dog, slowly but surely working to get myself back in physical shape, and playing music. In hindsight, I see that this was the best thing I could have done for myself.”
He adds, “My parents, my brother, and my extended family and friends were incredibly supportive throughout my ordeal. I could not have gotten through it without them.”
Although before his illness he says that he “would drop and do 50 pushups for fun — it was just part of my regular workout,” in the summer of 2012 Ron was exulting in an email to Drs. Morris and Schupak that “I’m up to 7 pushups!”
“Ron is part of his own treatment team and a true participant in his care,” Dr. Morris says. “He should credit himself for his outcome because he’s an important part of why he’s done so well.”Back to top