Recently I made the decision to join the Board of the Chris Elliot Fund. This is the same group that I teamed up with for the Seattle Brain Cancer Walk. I am very excited to be a part of the team and working to help others who are battling this crappy disease. Here is my statement on why I have chosen to do so:
On November 8 of 2011, I suffered a grand mal seizure. But I was lucky. It seems funny to say that I was lucky considering I had a grand mal seizure, but the truth is that I was. That afternoon, I was at a Starbucks in Seattle (less than 2 miles from the University of Washington Medical Center) having a potential newclient meeting for work, when I fell out of my chair and onto the floor. The seizure ensued. Based on the location, of course, UW is where the ambulance took me. UW just happens to be a research hospital and has partnerships with other medical institutions in the Seattle area. For example they are involved with the Seattle Cancer Care Alliance, which combines the knowledge of UW, The Fred Hutchinson Cancer Research Center and Seattle Children’s Hospital with a goal of beating cancer.
A week later I learned that I had a massive brain tumor in my right frontal lobe. Within two weeks I was scheduled for brain surgery. Quite a life changing event! Even now it seems crazy to say that I had brain surgery. I remember doing research about UW’s capacities and history performing brain surgeries. Using all of the resources that I could find on the internet and using contacts with friends and families, I was able to connect with some neurologists in the area. The results were unanimous, if you are going to have brain surgery in Seattle go to either UW or Swedish Hospital, nowhere else. Those places are the best and nobody even comes close. I even asked my neurosurgeon “are you good at what you do?” His response, “All I can tell you is that this is all I do. I operate and remove brain tumors, that’s it.” Honestly that was a great answer and all I needed to hear. When someone is going to open up your head and operate on your brain, you want to make sure that they know what they are doing. I wouldn’t want a general surgeon; no matter how good to crack open my head.
After surgery they performed the biopsy, I was diagnosed with brain cancer, oligodendroglioma, to be exact. I had a few days after my diagnosis, prior to meeting with UW’s team of brain cancer specialists, to conduct some of my own research. Using the internet, family resources (my mother in-law is a pediatrician and my cousin is a nurse who works in oncology), my family and I came up with a list of questions that needed to be asked. I had my list and went to my next appointment. I asked my questions, things like: Was my tumor preserved for future studies and use? Check. Was chromosome testing performed on my tumor? Check. In looking at radiation or chemotherapy, do you have experts who specialize in each area? Check. Do you have a patient/caregiver support group? Check. Will you notify me about research and clinical trials that may come up? Check. Not only did they answer yes to all of my questions, but most of them were already in motion, prior to me even asking. I mentioned that I was lucky. I was lucky that I ended up a UW, where they understand how to treat brain tumors. When they performed chromosome testing on my tumor it was found that my tumor was lacking some chromosomes which meant that chemotherapy had been shown to be effective in treating tumors like mine. That information played heavily into my decision to choose that route over radiation. What I have found out since then, is that there are many people who don’t have that same choice, they don’t suffer a seizure next to a world class medical center, they don’t have all the facts they need to make the difficult decisions on how to manage their treatment plans. Some people have brain surgery performed by the local hospital’s general surgeon, not at a place that specialized in brain surgery and brain tumors. After surgery, some people are not informed about chromosome testing and how that can impact their choice of treatment. Some people aren’t “lucky” like me. That is why I have decided to be a part of the Chris Elliot Fund – EndBrainCancer.com , by joining its board. I think that everyone who is faced with the daunting task of battling a brain tumor deserves a chance to be “lucky”. Most types of brain tumors and brain cancer leave the patient with a short life span. A life span that should be spent in having treatment that provides the best possible outcome, with the least amount of side effects. Information and knowledge is the key to making that happen.
The Chris Elliot Fund is a 501c(3) nonprofit charity that focuses on patient and caregiver support for those battling brain tumors. They work to make sure that everyone has access to the correct information so that they can choose a treatment plan that best fits their needs and desires. They also work to get people to correct place for treatment so that they receive the best care possible. CEF also looks to help researchers with finding live tissue samples and subjects. They work to make every brain tumor patient “lucky”. I would like to work hard to make others feel “lucky”.
They have a great event planned for March 21, a “Girls Night Out” at JM Cellars in Woodinville. I would encourage people to attend if they are interested. It would be great to have a Defeat Goliath presence there. Besides who can pass up on wine tasting?
Details can be found here:
Now some of you might ask the question, “Does this signal a sort of end to Defeat Goliath?” My response is not at all, things are only just getting started. Working with CEF will only expand and enhance the possibilities for Defeat Goliath and its mission.