I Outlived My Diagnosis: How Decades of Cancer Research Gave Me My Life Back
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I was diagnosed with a rare form of cancer when I was nineteen years old. At the time, I didn’t know anyone my age who had faced anything like it—and neither did many of my doctors. What began as pain in my calf turned into a long process of being passed from one appointment to another, with no clear answers. In 1999, I was a young, otherwise healthy college student, not someone who fit the picture of a cancer patient. It would be two years before anyone ordered a biopsy. I am not different from anyone else—my body just broke down earlier.
The pain was persistent, and my leg would sometimes go numb. At first, it was treated as a muscle injury. I hadn’t done anything that would explain it—I wasn’t athletic, I wasn’t exercising—but my doctors believed it would resolve on its own. It didn’t. Eventually, my chiropractor ordered an MRI. Afterward, I received a call from a surgical oncologist telling me to get to the University of Cincinnati Hospital immediately. That was January 6, 1999. I remember the date clearly.
Over the next several days, I underwent multiple biopsies. The doctors couldn’t determine what the tumor was, but they initially treated it as fibrosarcoma, a rare and aggressive cancer. I had surgery to remove the tumor and then underwent months of radiation therapy. For a time, it seemed like that was the course of events: diagnosis, treatment, recovery.
A few years later, I began experiencing severe pain in my hip. I raised concerns, but at twenty-one, I was reassured that it was likely nothing serious. I accepted that explanation until the pain became unbearable. Another MRI was ordered. I was handed the films and told to go straight to my oncologist. When he reviewed them, he told me to come back in an hour. When I returned, the room was full. That was when I learned I had been misdiagnosed.
Within days, I was sent to MD Anderson in Houston. What was meant to be a brief visit turned into two weeks of testing—dozens of scans and evaluations. The doctors concluded that I had Multifocal Desmoid-Type Fibromatosis, an extremely rare form of cancer. Desmoid tumors are locally aggressive. They don’t typically metastasize, but they invade surrounding tissue and recur frequently. At the time, there were no effective drug treatments. Surgery and radiation were the primary options, and neither offered a cure.
I was told early on that I would likely lose my leg. Because of how the tumors grew, even amputation would not remove all of the disease. The surgery required would involve removing part of my pelvis, and the long-term outcomes were poor. I chose not to pursue that option. I haven’t had surgery since 2002.
Over the years, I moved repeatedly to access care—Cincinnati, Houston, Boston. When your health is unstable, everything else becomes secondary. I worked for part of the year in politics and congressional finance in Washington, D.C., but often had to structure my life around treatment schedules and recovery periods. I have never been in remission. Cancer, when I was diagnosed, wasn’t considered something you lived with. It was something you either survived or didn’t. My doctors weren’t used to treating patients over decades. We learned together.
For most of my adult life, my treatment consisted of cycles of chemotherapy and clinical trials. I’ve been on eight different drugs and participated in four clinical trials. Many of them had little to no effect. Sometimes you have to let your disease progress just to qualify for a clinical trial. That’s the gamble.
The first three clinical trials I was in did not work for me. My doctors collected valuable data, and I am very proud of that. I kept myself healthy enough to sustain these treatments, and I got to see them come to fruition and work for many others with my rare form of sarcoma. But it wasn’t until the fourth clinical trial that I volunteered for that everything changed for me.
In 2023, after completing two years of weekly intravenous chemotherapy that ultimately didn’t work, my tumors progressed significantly. I contracted COVID, and afterward my condition worsened. Imaging showed further growth, and once again, amputation was presented as the only remaining option. I signed the consent forms and scheduled surgery for November.
On the day those plans were finalized, my medical oncologist suggested one last possibility: a drug that was not yet approved and no longer open for trial enrollment. The only way to access it was through compassionate use, a process that allows patients with no remaining options to receive experimental drugs while providing data to researchers. He believed it could help. I agreed to try.
The approval process took three months. During that time, my mobility declined sharply. I could barely walk or eat. I met with my oncologist weekly, waiting for news that the drug had arrived. Eventually, it did. I took the first dose at home. Within minutes, I noticed a change. For the first time in decades, I wasn’t in pain.
Follow-up scans showed dramatic improvement. Most of the tumors were gone or significantly reduced. The remaining disease was minimal. This wasn’t theoretical research; it gave me my life back. Feeling better, being able to walk, being out of pain? It was worth every single second of toil, every single chemo that didn’t work, every chance I got to take an aggressive stab at these tumors.
I stayed on the medication, with the intention of continuing indefinitely. There isn’t enough long-term data to know what happens when patients stop. I’m not interested in being the first to find out.
Looking back, the fact that this treatment arrived when it did feels precise rather than miraculous. I just kept missing this drug for years until finally everything lined up. It was the result of decades of research, clinical trials, and patients before me who agreed to test drugs that might not help them. My own participation in trials was part of that same process. Progress in cancer research is slow, incremental, and dependent on sustained investment. What took 25 years to figure out isn’t sad to me— it shows what research makes possible.
Working in politics has given me a close view of how funding decisions are made. When research budgets are cut or stalled, the effects aren’t abstract. They show up years later as delays in treatments that patients are waiting for. I think often about how close I came to running out of time. You’re trying to hang on, but you don’t know if you can hang on long enough for the drug to get approved.
I am here because the research pipeline stayed open— and others won’t be if it doesn’t.
I don’t see my experience as a tragedy or as something exceptional. I see it as an example of how research works when it’s allowed to continue—and what happens when it isn’t. I’m here because people before me stayed in the system long enough for progress to catch up. Cancer research only works if we don’t interrupt it. I don’t want to be the last person helped by that work. I wanted to help everyone behind me so they wouldn’t have to hear what I heard for 25 years.
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