The Low Down, The Plan, The Future

Cover photo by EmmaLee West with her trusty iPhone 7 outside the office. Thanks!

The visit with the Oncologist has taken place and the plan is in. I’ve had 24 hours to sit, think and chew on it a bit. No big surprises really, mostly confirming what we had found in our own research and the help of some others. It’s a long game. Not really a game, but you know what I mean. The battle. The war. The fight for life.

We knew the name of the tumor before. Gastrointestinal Stromal Tumor. It’s rare and unfortunately does not respond well to traditional chemo or radiation. It’s a tough sucker. Fitting right? I never seem do anything the easy way. It’s a form of Sarcoma, which essentially says it’s a soft tissue tumor. Right now all we know is from reading the pictures and some toxicology reports, but it appears to either have originated from an intestine or a lymph node. It doesn’t look to have spread heavily, but there is the possibility of some satellite nodules. All not great, but not as bad as it could be.

The good news is there is a drug that has been found to be about 70% effective on this tumor type. That’s pretty good numbers. There’s a 10% mutation type that it doesn’t tend work at all, and we are waiting on that test to see if I fall in the unfortunately category. The drug is called Gleevec (www.gleevec.com) (Imatinim Mesylate) and is a growth blocker that attacks the tumor with a very specific method of controlling the KIT protein related to GIST. For those interested, you can learn a little more about how it works on the drug site. (http://www.gleevec.com/patient/kit-gist-gastrointestinal-stromal-tumor.jsp)

At the outset I really hoped for the possibility of a quick surgery and some treatments afterword. Get this alien body out and let me push forward with healthy living. Well the tables are reversed a bit. Gleevec is a long term treatment where we watch first to see if it works at all in my case, and then see if it works well enough to shrink the tumor to where it’s operable. In my case it’s even tougher because that is one big frickin’ tumor (my name for it). Like off the charts big in their stage classifications. Because of it’s size it puts me in the high stage III low stage IV level cancer of this type. I’ll likely start taking the daily pill next week once we jump through the insurance approvals & get it ordered to the pharmacy. This isn’t something the keep on the shelves. It’s definitely a bit obscure.

The other downside…it’s super expensive. Like super duper expensive. Fortunately I do have insurance through my work. There’s some hefty out of pocket up front being that it’s a new year, but once that it’s met the treatment is covered. Thank goodness for that. We are also looking into some manufacturer assistance programs to see if we qualify. Fingers double and triple crossed that we do to help take some bite out of the financial side.

Holding well wishing notes from my daughters

while getting ready for the biopsy. Getting my

arm stuck is going to become a regular thing.

I’ll be going in every couple of weeks to get my blood drawn and checked to make sure I’m handling the treatment ok. Every 2 to 3 months a new CT scan to see if it’s doing any good. Those are going to be the times of higher anxiety, hoping for something good! The side effects are pretty much what you’d expect. Fatigue, and more of it. I’ve already been experiencing this in my fitness efforts as I tired faster and have a hard time completing the same workouts. But the good news is, I can do everything I can and want to do in my fitness. So that’s my number one goal, keep as active as possible to mitigate the the fatigue I’m feeling and what’s to come. There’s a chance of rash, acne like I’m 15 again (boo!) and some digestive issues. Wahoo!

I’ve had a huge influx of people offering their personal experiences or someone they know using various diets, treatment centers, etc. to either help or cure their situation. Honestly I welcome it all and have a huge stack of reading materials and videos to watch. I will look at all of them objectively and with keen interest into what might be helpful to my specific situation. Without a doubt I’m continuing in my healthier diet I’ve already adopted with renewed focus and determination. I’m still utilizing my 2x a day intake of the OGX FENIX shake that gives me a great basis of protein and other nutrients as a foundation to my healthy diet and exercise. I’m still eating a more plant based diet, but have yet to shift to anything more focused. I’ll do my research and see what’s a good fit. None of these things have been shown to interfere with the primary treatment plan, so if it makes me healthier and aids in the process, all the better! Keep living life to it’s fullest. #X4Life is still the theme!

Cycling Snow Canyon last fall feels like the perfect visual for me. Photo by Jason Shamy

So wrapping it up, the short version is I have a treatment plan that involves a daily pill and being as healthy as I can in the process. That’s what I’ve been doing, so just keep doing more of the same with even more motivation to never give up. As I said in my first note about this all, I Choose To Live. That’s my mantra. The road has been laid for me, but I choose how I travel it and the attitude I have along the way. I’m in the saddle on my bike and spinning for the entire distance. I fully expect plenty of ups and downs. Hard days along with good days. Today was a good day. Pain is down, I enjoyed a full effort spin class and started the day fresh and ready for action. Let’s hope for those to be in the majority!

I want to say again that the outpouring of support has been overwhelming and felt in the depths of my heart. Truly I’ve loved hearing from each and every one of you and wish I could take time for a personal conversation with each of you. Old friends, local acquaintances, high school friends I haven’t heard from since eons ago (that’s when I went to high school) who have shared their very personal battles with cancer. Every one of those has been amazing. Thank you.

I’m most thankful for my family. The support of my amazing wife Heather is unwavering. My kids are strong and doing all they can to wrap their heads around what this means, but also understanding life is there to be lived.