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Rallying Fatigue

April 29, 2015

I want to start off by saying that I love the Seattle Brain Cancer Walk. It’s an amazing event that I truly enjoy everything about. For 2015, the walk has been moved from September to May. For whatever reason, I have had a hard time rallying up the troops for this year’s walk. Maybe it’s the time change and feeling like we just did a walk not too long ago, maybe it’s that I am still just coming off of tax season and need to recharge. Maybe because the best time to recruit and get the word out was in the middle of my busiest time at work. It’s probably a little bit of everything, but it has been a challenge for me this year. And over the years I have had simply unbelievable support, having teams that have finished 1st and 2nd for number of people and have finished 2nd place for funds raised during the three walks I have participated in. That is fabulous! Thanks to the Defeat Goliath supporters!

Honestly I have found it harder to push and rally people to support the brain cancer cause as each day my health continues to improve. I am to a point now where if you did not know my story, you would have no idea that I have brain cancer. I have overcome all of the health problems that Goliath brought. The only lasting reminder is the scar on my head. My first warning sign of Goliath was a seizure. I have since been on anti-seizure medicine and have not had a seizure since surgery. Check. After surgery, I had issues with my left hand, where I wasn’t able to use and move it properly. After a few weeks of working on it and regaining strength and control – it was working just fine. Check. I also had some visual recognition problems, where I could see something, but could not process what it was. It’s hard to explain, but I almost walked out in front of a couple of cars after surgeries and was just lucky that I had people with me to stop me. It happened to me twice! That was gone about a month after surgery. Check. The other side effect I had was some stuttering issues. I did some speech therapy and have worked on that over the past few years and now I don’t feel like that is an issue any longer. Check. Fatigue has been an issue from day one as a result of anti-seizure meds, the surgery, and a year of chemo. Although I am not sure if I feel like I have as much energy as I once did. I was also 34 when everything happened and now I am 38, so I think that time has also played a role with this one. But I do feel as good as I have since my seizure. Check.

I am back to doing everything I did prior to my diagnosis. I have completed a 12 hour adventure race, I am back climbing again, having climbed Sherman Peak on Mt. Baker, Sharkfin Tower, Dragontail Peak, Colchuck Peak, Mt. Maude, Seven Fingered Jack, and the list can go on and on from there. This past February I ran my 3rd ultra-marathon – the Orcas Island 50K. I am back to doing all of the things I love to do, despite Goliath.

I think because of this, I suffer a little bit of “survivor’s guilt”. During my journey I have met so many amazing and wonderful people who have been severely impacted by this disease and ask myself all the time “why I am the lucky person to get the Oligodendroglioma grade II tumor?” Why did they get the GBM or the Astrocytoma diagnosis, while I got the Oligo? It’s sort of weird to think about, but I ask myself, why am I the person who got the easier brain cancer path? Why me? What is the purpose or reason behind my health and long term diagnosis? Why are others, given so much more to battle with? Rallying people is harder now as anymore I don’t see myself as a great representative of what brain cancer looks like. I am healthy, I am strong. I got an Oligo.

Once again at this walk, someone whom I met and knew on both a personal and professional level will not be walking this year. He has a child younger than mine. Yet he had a GBM and the GBM took his life. As I went through above, I have overcome all of the deficits this disease caused me so far and have come out stronger in the end. I am still off doing crazy adventures, my career is moving forward as planned, yet I look around and see others who have been decimated and completely derailed by this disease. I have known many people who have died due to this disease. You see I am the minority. Not only in that my tumor only makes up 2% of the brain tumor spectrum, but also that aside from my scar, I have had no noticeable side effects or lasting ramifications, I am strong and out doing the things I have always planned. I don’t feel the limitations and ugliness that brain cancer typically comes with. Why am I the lucky one? Why not all these other amazing people?

My first Brain Cancer Walk, I had just finished a chemo cycle that Friday and then walked on Sunday and had to take a three hour nap after that just to recover. This year, my plan is to climb Mt. St. Helens on Saturday, do the walk on Sunday, then go coach my boys at flag football on Sunday afternoon. Quite the change from just a few years ago.

The Seattle Brain Cancer Walk has a direct impact on numerous people, their lives and their quality of life. Currently at Swedish in Seattle there are some clinical trials underway, which were started in large part due to the walk. From trials of treating brain tumors as being caused by a viral infection, to a device that works like chemotherapy, but without the side effects. Some truly amazing things are going on right here in Seattle.

Before anyone asks, my odds of being part of a clinical trial is basically zero. I am too healthy and my tumor is too rare for me to qualify. I only know of 1 trial that has been done to date on my type of tumor. Thus I will need breakthroughs with other types of tumors to be applied to mine in order to hope for complete healing.

One thing I have learned from being a part of the brain tumor community, is that typically all tumors come back. Even the people who have battled the longest have typically gone through multiple periods of tumor growth and then multiple periods of treatment. And with each cycle, the tumor always comes back worse and more aggressive. Which means that for me it’s probably only a matter of time… Even knowing that I still wonder what my part in this story is, while I am strong and feeling great.

Which is more reason to support the cause you can join team Defeat Goliath May 3rd or you can donate.

http://www.defeatgoliath.org/events.html

We also have new Orange Defeat Goliath tech shirts for only $12.

http://www.defeatgoliath.org/dg-shirts.html

DG

DEH

2 Comments leave one →
  1. Anner permalink
    April 29, 2015 7:41 am

    Well said, David! You’ve given all the reasons why the Seattle Brain Cancer Walk and other organizations are so crucial to people living with this disease. The best and only hope is a science breakthrough and the funding from these events keeps the research going. I’ve heard of other brain cancer survivors who have had the same trouble pulling their team together after they start to “get better” – once they don’t look sick people fade away. Your blog goes a long way in explaining why the finanical and moral support is always in high demand. Thanks for putting it out for the world to see.

    Have a great time at the Walk!

  2. April 29, 2015 10:53 am

    hey David, a lot of this resonates with me even though I’m a year or so behind you. Looking forward to seeing you and the family at the walk this year.

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