Love, Diagnosis and Second Opinions
Editor's note: Brendan Locke was the husband and caregiver for his wife Melissa who was diagnosed with synovial sarcoma at 38 years old. We are honored that Brendan openly shared his story with us, from the first time he and his wife met to their last day together. His is a story of love and dedication and we hope you learn as much as we did from his experience in this two-part guest blog series. Stay tuned for part two in the coming weeks.
Many powerful stories start when two people fall in love, and my story is no exception. I met Melissa—the love of my life—shortly after moving to Chicago just after my college graduation. While I was new to the online dating scene when I met Melissa (as archaic as it was at the time), she was one week away from calling it quits and going back to meeting people the old fashioned way. We fell in love quickly—we met in March and were engaged by Thanksgiving. We were young and looking forward to building our future and family together. When we got married, neither of us would have imagined that our lives would be forever shaped by the experience of a synovial sarcoma cancer diagnosis two kids and 10 years later.
I often describe Melissa's cancer diagnosis as a fluke. I was on antibiotics for bronchitis and pneumonia when she woke up in the middle of the night with serious pain in her side. While she initially thought it was muscle strain from carrying our son, she soon noticed that she felt out of breath doing everyday activities such as walking up and down stairs. Thinking she was also coming down with bronchitis, she headed to the doctor who told her she had pneumonia. Her cough during this time was something unlike I've ever heard before—deep and rattling. After spiking a fever a few days into taking her medication, Melissa called her mom who was an oncology nurse, who recommended that she go back to the doctor for x-rays.
I was at work when Melissa called me hysterical saying that her doctor was going to admit her to the hospital because her lungs were filling up with fluid and collapsing. She had her lungs drained and the doctor provided us with two options—we could either go home and see if Melissa's lungs filled back up or we could do a CT scan and other tests to try to determine the cause. We chose the additional scans. We had to know.
The doctor came in the next morning after the tests and we knew something was wrong. After stalling for a moment the doctor said Melissa had two nodules in her lungs consistent with metastasis but that they could not identify the primary location. This wasn’t Melissa's normal doctor and she wasn’t an oncologist, so she could only say so much. We were sent to a different hospital for a biopsy and Melissa's mom joined us to help us process the information. Melissa went into surgery for a frozen slide biopsy and while the results did not come back as a specific type of cancer, the doctor was confident that it was, in fact, a tumor.
We were eager to seek out second and third opinions to help us identify the form of cancer and learn our options to treat it. Through visits with additional doctors, we not only learned that Melissa had synovial sarcoma, but that this is a rare disease, frequently misunderstood or even misdiagnosed. We were recommended to start with chemo, but we decided to see one more doctor in Houston just to make sure we were covering all our bases. What she told us filled us with hope and determination. She said, "I see this all the time. I have a plan and you're going to watch your kids grow up." From that point on we were all in, committed to doing whatever it took to get Melissa back to living a normal life and witnessing the milestones that every mom should, even if it meant traveling between Milwaukee and Houston for extended periods of time for treatment. It was with this doctor that we made the decision to begin attacking the cancer aggressively with the standard of care treatment. That is, until she recommended an immunotherapy clinical trial. That's where the next part of our story begins.
We always welcome input from the larger clinical research community—patients, caregivers, researchers—and periodically feature their voices on our blog. Hearing from them gives us new viewpoints and insights in making research better.