Why is it Important to Write About Cancer Patients Who Don't Survive

Why should you read this blog?

Before I started this blog I remember thinking about how to convince people that Mathew’s story is worth reading. Why is it important to write and read about cancer patients who don’t survive. Other than a young man’s wish to make a difference or a mother’s need to share her son's story.

I thought back to the tragedies people do watch on TV or want to read about online. My mind immediately goes to little Adam Walsh.

I lived in Miami and shopped at the mall that Adam Walsh was abducted from. His story changed my perception of many things. It made me a better, a more aware parent. 

When I watch the shows hosted by John Walsh I know they are important because people need and want to learn about ways to be more aware of predators, they want to possibly help bring one of these missing children home.

And of course, people want to hear about cancer survivors. My Mom is a 12-year breast cancer survivor. My sister Elizabeth wasn’t.

Some cancer survivors, only survive another year or two after their treatments end, or only survive a few years, all the while receiving treatments.

In the beginning, Mathew and I hoped for two to three years. We knew that without a complete response, with the location of his tumor and the types of treatments necessary to keep it in check, long-term survival wasn’t an option.

Three years looked pretty good, Mathew was even looking for work he could do from home. We talked about moving closer to Joseph. But after only a few months, he was no longer able to receive chemo. The few good hours a day, that up to that point, had been the norm, declined. And by good, I mean alert with some energy to do some writing, play some music or have a visitor. Pain was a constant. 

People may not want to hear about the those who don’t survive. Or they find no benefit in these accounts. Or it is too depressing. I get it. People want to plan vacations, buy new cars and share their triumphs and those of their children and grandchildren. 

About the same time I was mulling this over, the Moffitt Cancer Center commercials started airing on the radio. “The courage of our patients…..”

It always sparks a flurry of thoughts and emotions.

• courage, my son Mathew, who was at a point in his life where things should have been taking off and coming together for a wonderful, fulfilling life and instead comes to a grinding, painful halt. A prognosis worthy of a horror movie, you will not survive. 

• courage, the year before Mathew’s diagnosis when he was trying to function normally despite the constant physical pain, strange symptoms, sickness and his concerns were discounted like he was crazy.

• courage, my sister Elizabeth, who went to Moffitt in 1995 for a bone marrow transplant when her breast cancer came back in her lymph nodes. My sister, a nurse, who when she was first diagnosed told me about the lymph node involvement and when I asked her what does that mean, she replied, “It means I probably won’t be around in a few years.”

And other things I have learned or know to be true.

-when Mathew was screened for a clinical trial, we learned that the medical community wants to be able to tell 200,000 breast cancer patients that there is breakthrough treatment and of course they would love to tell 15,000 Sarcoma patients or 12 DSRCT patients about a breakthrough treatment but it is a numbers game. There is funding to consider, it’s a bit of a triage situation. 

-patients like Mathew and my sister Beth, are the clinical trials. He understood that.

 Again that’s part of the reason for this blog. To make his journey and his death have meaning. To help someone. 

As Dr. Gonzales mentions in this video, each and every patient is a step forward in the building block for a cure or a remission. Every patient is important.

That’s why their stories are important.