The diagnosis, The surgeries, Finishing radiation

I never felt like I had really done anything to become a brain cancer survivor. Like it wasn’t as if I had done something special. I was just there doing my best to get through this surreal situation.

I did take charge of the situation from the beginning. Never admitting to myself that it was as bad as it looked. Some might call this denial, but I prefer to call it manifesting success. I wanted to see myself as a survivor.

Nothing more than that. Not a victim. No soul searching. No feeling like I needed to live every day as if it was my last. No reflecting all my life of 41 years. Just being a survivor.

There were decisions to be made. I realized the first step of becoming a survivor was to do some research. Part of this next step was to realize that I needed to find my doctor and be decisive about who I chose.   

The one thing that I felt that I did achieve was to keep living my life the way I always had and that helped me believe that I would come out the other side. I also made a conscious effort to show everyone else that I was doing this without speaking about it.

I speak about it now and have been speaking about it over a period of many years as I feel it is important for people to hear about it. To hear my story, yes, but to relate my story of impossible odds to their own. Or to see this story and share it with someone who could use it.

These situations are difficult, complex, nuanced and scary. There is no simple or direct way to approach how to respond to your situation. Because every situation in a cancer diagnosis is different.

What type of cancer? How does it respond to treatment? Should I ask ‘What are my likely odds’? Do I want to know the answer to that? No one knows what it’s like for you. Because there is only one you.

The last decision that I needed to make was to have radiation. This was an easy decision as I was told that in my case this would be painless. I would have to go five days a week for 30 treatments.

I was told that there would be two side effects. The first was a short-term situation of becoming increasingly tired and run-down as treatment progressed. The other would be a lifelong mutation of my hair follicles on the left side of my head.    

I mostly recovered from the fatigue within a couple of months. The hair loss didn’t bother me if it meant long term success as that was the only thing that mattered. On some days I looked at it as a badge of honor, like the huge scar that it barely concealed.

This treatment was the last piece of the puzzle needed to move on with the rest of my life. I needed to celebrate the occasion in fine fashion, and I knew just the proper way of doing it.

Pittsburgh Penguins legend Mario Lemieux gave me the inspiration for my celebration idea. He went through radiation and decided that he would play the night that he finished his treatments.    *See attached story from 2017 below

This vision was exactly what I needed. I would ski on my last day (6/3/24) of radiation.

As a long-time back country skier, my answer to the celebration was clear. I enlisted my ski partner Dave to be there, and he was more than willing to join me. I also invited several others to join us.

In the end… It was one of the most memorable days of my journey. Several people showed up to join in the festivities to celebrate and this all made me feel like I was going to be a survivor.

Now, here I am…where I never thought I’d be as I skied down that first run 20 years ago today!   

* Skiing to Celebrate my Anniversary

When I moved to Port Angeles, Washington in 1991 I carried the memories of witnessing game two of the Stanley Cup Finals. This was the game that Mario Lemieux made the iconic goal against the Minnesota North Stars that changed the series and lifted Mario into legendary status with his performance. What we saw as impossible to achieve…he brought to reality via pure will and creativity.

In 1993 he was living his life as the hero and savior of Penguins Hockey after leading his team to back-to-back Stanley Cups Titles. He was having another strong year, crushing the scoring competition with his incredible play.

Then…he was diagnosed with Hodgkin’s Disease…Cancer. Although it is a less problematic type of cancer…with a five-year survival rate today of 81 percent…it is still cancer. With treatments that included radiation.

On March 2^nd, 1993, Mario finished radiation and booked a charter flight in order to play that night in Philadelphia. He scored a goal and assisted on another. Amazing…

In November of 2003 I had a seizure to alert me to the fact that I had something inside my head that didn’t belong there, a brain tumor. With my confidence in the medical facilities in Pittsburgh and the support of my family, I chose to have surgery there.

After hearing ‘it’s worse than we thought’ in regard to the level of concern the tumor presented, I opted for an advised second surgery. Everything went well and I am thankful for the level of care that I received.

I received my radiation treatments when I returned home to Washington. As my treatments were wrapping up, I remembered Mario’s story and thought about the possibility of using it for motivation.

It was in that tradition that I chose to do… what I wish I did as well as Mario played hockey…ski. We typically have snow in June, and I thought ‘why not?’.  With this inspiration I skied the afternoon of my last day of radiation with several friends…and had a blast.  On June 3^rd I was able to ski on the 13th anniversary…a yearly tradition. (conditions permitting)

At the bottom of the run…Klahanie Ridge. It was like skiing inside a ping-pong ball…but hey…it was skiing.

Mario went on to do all he could to keep the Penguins in Pittsburgh as part owner and now they have the most successful team in the league. (Five Cups!) He also created the Mario Lemieux Foundation. He is now 22 years cancer free and devotes much of his time at the Foundation raising funds for to help reach the ultimate goal: a cure for cancer.

His approach to hand that he was dealt again motivated me. I have been a lifetime fan of using the natural world as my playground and sanctuary. I had years of experience in outdoor recreation and leading others to expand their appreciation of our natural world.

With this history I created Survivor’s Outdoor Experience. Our programming is directed towards the ultimate goal of giving participants strength, hope and a sense of the future.

It is a personal journey to fight this disease known as cancer and we all have our path. Mario used winning the scoring title as his motivation (he did win it) and I used it to get back to normal as mine. With the inspiration of his story.

Thanks & Congrats, Mario.