TELL YOUR STORY
We invite you to tell us your
sarcoma story, as a patient,
survivor, or as someone who has lost
a loved one to sarcoma.
Rein in Sarcoma has been a meaningful part of many patient and families’ lives and a source of strength in community. Collectively, a key component to this support has been love. The Martin family story stands out with philia – “brotherly love.”
“He is coming to the Winter Gathering!” said Allison Martin, one of our 2017-2018 Rein in Sarcoma Scholars and Winter Gathering panel moderator, a deep happiness in her voice. When you meet Allison, you sense her strong belief in the mission of Rein in Sarcoma, and her depth of love for her brother. It is evident in all of her actions.
Allison left a career in the Navy, having graduated the US Naval Academy in Annapolis and holding leadership positions aboard ship, to become a medical student at the University of Minnesota, now in her third year. She is working to improve outcomes for her brother, of course, and in turn, improving outcomes for all sarcoma patients. Long time RIS volunteers and physician mentors were impressed with Allison’s impact at the sarcoma scholar boot camp, in education projects, work with peers, RIS activities, and keeping up on research.
In meeting Allison, you feel a set course, driven by love. The person who helped guide her growing up - a best friend, a pillar of care, support, council - her brother, has de-differentiated and well-differentiated liposarcoma in the abdomen.
James “Jim” Martin is five years her senior. Allison used to sing the praises of her beloved sibling to childhood friends, recounting his caring, his intelligence (nearly perfect score on the SAT), his athletic ability in soccer and hockey, and his rock hard abs! The perfect mix of brains, wisdom, care, and athleticism, Jim graduated from the University of Minnesota, knowing he wanted to make a positive impact on the world. But as time passed, his rock hard abdomen grew larger and larger.
In March 2012, Jim finally went to see a health care provider after months of dealing with a mild fever and dry cough as well as feeling uncomfortably bloated. Initially diagnosed with “walking pneumonia,” he was prescribed antibiotics, but when he returned with no change a week later, a CT scan was ordered. His best friend accompanied him to the hospital for the scan. They discovered a “lump” in his abdomen, which seemed quite the understatement after he was shown the scan, as it seemed to fill the entire abdomen. The providers wanted to hold him overnight and do surgery to remove the mass the next morning. Jim was in shock and hardly in a good state of mind to be advocating for himself.
He was initially inclined to trust the medical providers, as they were educated medical professionals after all, but very little information was given, and their bedside manner left much to be desired. They didn’t even show him the scan until he was getting ready to leave. Had he followed their advice, he would have seen a general surgeon to remove the growth in the morning, and who knows what the outcome would have been? Likely he would have stayed and allowed that to happen, but for his friend and strong advocate, who helped him think outside of the box. He reminded Jim that he could take some time to process all this data, do more research and get a second opinion, instead of just acting quickly out of fear. So, they left “against medical advice” and got some comfort food at White Castle.
Jim looks to empower readers of this story. Sarcoma community family members, please, be skeptical, ask questions, research and read to educate yourself, self-advocate, get opinions, even from physicians in the same medical system! Don’t take a first opinion as the path you should take, you may know more information, work with providers who talk with you, and answer questions. For rare conditions like sarcoma, look for treatment where the volume is.
Jim’s abdominal mass was soon diagnosed as liposarcoma after additional medical consultations and research. The fourteen-pound tumor was removed quite cleanly by a surgical oncologist at the University of Minnesota, and Jim felt like he was getting a new lease on life with bonus weight loss. He had always been existentially inclined, so he was very interested in the potential meanings of “having cancer.” He tried to see his situation as both comically absurd, but also as an opportunity in the sense that it could be a catalyst for self-transformation. He thought perhaps this health crisis could be the wake-up call he needed to stop taking life for granted once and for all, since that had long been a priority, yet hard to achieve and maintain. He wanted to try to “live more consciously,” as they say, and spend less time on autopilot, falling back into old negative habits of thinking and behavior, which he believes often make things worse. He also hoped, perhaps, he would gain some insight from his own experience that he could use to help others.
Jim had a recurrence in 2015 with another surgery that also went relatively well with the exception of losing the right kidney. Dealing with another recurrence, today he is doing the trial-and-error chemo route as he continues on his cancer journey, but he is also continuing on what might be called his “spiritual journey” as well. Though always very skeptical, he likes a lot of Eastern/New Age activities including yoga and mindfulness, and also works on consciously countering negative perspectives with positive ones, and tries to cultivate cognitive flexibility in contrast to cognitive rigidity. He seems aware of where he wants to go, purposefully using his intelligence and insight to help people around him. He makes an effort to reach out to others in ways they can understand. He loves to engage in deep conversation and to help alleviate suffering as he is able.
Jim attended the Rein in Sarcoma Winter Gathering last year, hearing Dr. Mark Truty from the Mayo Clinic talk, his sister moderate, and getting to be a part of community coming together in education and support. He learned Rein in Sarcoma is a community of strength and collaboration, led by families and people who care, like his sister. Incidentally, he had a very promising surgery consultation at the Mayo a few weeks ago with the same Mark Truty, when two other surgeons had already ruled out surgery as an option.
Jim says he is acutely aware of the truth in the famous quotation from Viktor Frankl’s Man’s Search for Meaning, “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” And, he adds, a sister’s love.