What Does ‘Standing Up to Cancer’ Mean to You?

My urge to “stand up for cancer” began from my personal experiences with witnessing treatments for melanoma and my subsequent loss. My wife was first diagnosed in August 2004. She endured multiple tests and procedures.

They started with removal of lymph nodes and a year of interleukin. We went a year thinking “we got it all”. Eventually, we learned that the melanoma had metastasized to her liver. The only available treatment at the time was IL2. This had a 3% success rate and exerted a devastating impact on the body but was the only option.

By 2008, this treatment had failed. My wife was offered and accepted the opportunity to participate in a clinical trial for ipilimumab. I didn’t know it at the time, but we had become part of the birth of a growth in immunotherapies. Unfortunately, she was not among the 30% who responded to this novel immunotherapy and passed away that May. I learned a lot through this experience and will continue to educate myself. This kickstarted my own self-awareness and what drove me to see a dermatologist.

A year later, I went in for a spot on my chest, but when the dermatologist conducted a full skin exam, an early-stage melanoma was discovered on my back. This spot was “in situ” and meant removal and monitoring were all that was needed. This opened my eyes to the importance of early detection.

For me, standing up for cancer mostly lies in trying to increase survivorship. My approach includes multiple avenues of volunteer work. This includes increasing awareness. I have been doing this for over a decade by participating in, and now coordinating, a melanoma walk in my state of Oregon.

These walks are not limited to fundraising for research. This is also a place where information and awareness can spread. The walk also creates a place where people that have been touched by melanoma in some way can meet up, support each other, and network to find other venues through which they can support or be supported. We have a van there with dermatologists to give skin checks and professionals on hand to answer questions. 

I also support research into early detection tests with an international organization. We are supporting researchers’ efforts in creating MCEDs (MultiCancer Early Detection tests). The ultimate goal is to see tests developed that can detect cancer early in a minimally invasive way with a cost that is affordable. Any cancer detected early will have a higher survival rate.

Here in Oregon, I am part of a group of scientific research advocates. We are a diverse group available to researchers when recruiting patient advocates for their projects. This group also gets informed of opportunities to advance our education, helping us to understand the work we are assisting with.

Our work with researchers can consist of sitting in on discussions, answering and asking questions, and writing letters of support once we fully understand the project. I am presently beginning a project to explore how to help those being treated with immunotherapy to tolerate the side effects of treatment long enough to have a chance of survival.

Beyond this semiprofessional work, I have my everyday interactions. I never fail to bring up the subject when an occasion occurs. Granted, I do advertise this subject by wearing shirts, hats, luggage covers, and a tattoo to prompt a question or two.

In my pocket, I carry cards with my contact information in the event someone might want a longer conversation or would want to get the information to family or friends. I have been standing in line at a grocery store and noticed someone with a suspicious spot and could gently bring up my story and suggest they keep an eye on it.

In recent years, I've adopted the phrase "burdened with glorious purpose" to describe what motivates me. I have a firm belief that when we stand up to cancer, it makes a difference.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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