Finding hope in helping others after my wife’s death from synovial sarcoma

My late wife, Melissa, was diagnosed with stage IV synovial sarcoma — a rare type of soft tissue cancer — in January 2016. She died from complications of it on Sept. 11, 2017. But neither of us ever saw the point of asking, “Why me?” It just didn’t seem productive. Even if we could’ve come up with an answer, it wasn’t going to help us in any way, so we decided it wasn’t going to be a part of the conversation.

Instead, we focused on what we could do. With sarcoma, it’s all about managing quality of life, so we tried to be as progressive as possible in deciding on Melissa’s treatment. We also set up a travel assistance fund for other adults with sarcoma, so that they could obtain a second opinion without financial hardship. Now that my wife is gone, I’m also keeping her memory alive for our two young sons.

My wife’s synovial sarcoma diagnosis

Synovial sarcoma usually occurs in arms or legs, but in Melissa’s case, it was in the pleural lining of her right lung. This type of cancer is usually found in young adults ages 15-40. Melissa was 37 when she was diagnosed.

Synovial sarcoma is a silent cancer, in that there often aren’t any obvious symptoms. But in Melissa’s case, she woke up one night in October 2015 with pain on her right side. Our younger son was only two and a half at the time, so she thought she’d pulled a muscle in her back from carrying him around. She got a heating pad, took some ibuprofen and went back to bed. Over time, it went away.

The next month Melissa developed a wet, wheezy cough after catching a nasty cold. It didn’t clear up, even after taking an antibiotic and an over-the-counter mucous-relief medicine. Then, she spiked a fever, and an X-ray showed that her right lung was 75% collapsed.

Melissa was admitted to the hospital that same day, and the doctors drained three liters of a thick, dark-red fluid from her right lung. A CT scan revealed two suspicious nodules in its lining, too, but it wasn’t until we got the results back from a “FISH” blood test (which detects molecular changes in a particular gene) that we finally learned she had synovial sarcoma.

Finding rare-disease expertise — and a plan — at MD Anderson

Melissa and I came to MD Anderson in early 2016 because we knew that most oncologists near our home in Milwaukee would probably never see a case of synovial sarcoma in their careers. Dejka Araujo, M.D., has treated more synovial sarcoma patients than anyone else in the world. Synovial sarcoma is not just Dr. Araujo’s focus; it is her passion. And she was the first doctor to tell us she actually had a plan.

For Melissa, Dr. Araujo recommended six rounds of chemotherapy, followed by an immunotherapy clinical trial. Melissa handled the chemotherapy really well. But her cancer didn’t respond to the immunotherapy as well as we’d hoped, so she stopped the clinical trial and got on a medication designed to keep her cancer in check, rather than cure it.

The immunotherapy clinical trial showed a lot of promise, so Melissa was happy to participate. And even though it didn’t work out for her, as the first adult sarcoma patient to be enrolled in it at MD Anderson, she was glad that other patients could follow in her footsteps — or even just have an easier time because of what doctors had learned from her. She was proud to be a pioneer.

Modeling how to turn a negative into a positive

As the mother of two young boys, Melissa did whatever it took to stay alive, no matter how sick it made her feel. And she did an amazing job. She didn’t dwell on the fact that she had cancer. And she never complained. Melissa kept her focus on the boys and being their mom.

Melissa and I shared the belief that life becomes more purposeful when you’re doing something good. So our travel assistance fund was something we really became passionate about. And I still find it incredibly rewarding to help other patients with sarcoma.

I plan to keep telling the boys about their mom and her resilience. I want to teach them to be thankful for the opportunities they do have, instead of being sad about what they don’t. It’s always going to be sad that they lost their mother so young, but I’m going to encourage them to try to turn it into something positive. Because Melissa did. And that’s why the first 10 years of our marriage were amazing, but the last two were exceptional.

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