The Battle is Underway

My future is in my hands, quite literally right now. My daily medical treatment primarily consists of these two not so small pills taken at night to wend their way through my system, eventually to put the growth block on the tumor.

I've had a lot of questions lately about how the initial treatments are coming, how I'm feeling, and reactions to my recent positive news. I sure appreciate all the interest and care everyone has offered and thought I'd post a few replies for anyone interested.

You're reading this, so you're somewhat interested, right? Maybe. Kinda, sorta. Good. Hope so or I’m just writing all this for myself, which is ok too.

Treatment started Friday night. And by treatment I mean I started taking Gleevec as a daily pill that will be a part of my life for the foreseeable future. I realized with my last update I may have portrayed that my "common" mutation meant this was easily treatable. Sadly no. In fact the KIT mutation I have is actually just that, a mutation from the normal version so I actually have to take twice the dosage to attack my tumor. 800mg instead of the minimum 400mg dose. Which of course means a likely increase in side effects.

Way to go me! I do always seem to find the hard way of doing things. The easy road would be too simple, right?!

The good news is that this is a known mutation that is treatable and found to typically respond to Gleevec. So full steam ahead, guns a blazing. Attack mode.

GLEEVEC is anything but GLEEful

Thanks to my pal Jason for that line. That pretty much sums it up. So how do I feel? Honest answer is yucky. No bueno. Not all the time, but without a doubt I'm feeling some effects and my body is not happy with the drug. Only two days into it, but it’s a bit of a rough start.

I had the pills in my hand Friday morning planning to take the pills at my first opportunity. Then it dawned on me that I might be screwing up my day if there were any side effects. Instead I waited until Friday early evening to pop the first dose. About 30 minutes after taking it, the nausea kicked in. For about two hours it feels like some food poisoning or indigestion.

Day 2 I figured I'd take it even a little later and with some food and even more water. No difference. About two hours of suck followed before my stomach settled down. On the upside, at least that seemed to be all the nausea for the next day. Maybe I can find a balance of foods, how late I take it, etc for best possible management of the first side effect. Maybe my body will acclimate. Time will tell. Hope so.

I do feel the fatigue already as well. That might be a confluence of factors like recent travel, change in my physical routines and foods, and of course the tumor itself. I'm determined to push through this side of things. This is the part where I say "I got this" and use some willpower to make it happen anyway.

Saturday morning included morning spin class with my lovely wife. Felt like sleeping in. Got up anyway. No giving in. I choose to live means I choose to do everything it takes. I may have only accomplished about 90% of my normal distance and effort, but I was there. I was in the saddle and pushing. I'm doing this for me. I'm doing this for my family. I'm doing this for each and everyone that happens upon my journey. There is no option other than pushing forward each and every day.

And the bills are rolling in, from all directions

If you are a fan of the music of Evita you might have sung that last line along with me. Another point many mentioned is my last post made it sound like my treatment was all being covered by the manufacturer. Uh sorry, nope. It's a positive and I'll take every little bit of positive I can get these days. I am so very grateful to have qualified for some assistance from the manufacturer on that crazy cost for the drug, but it's only one part of the overall costs involved. If you haven't noticed, US medical and insurance costs are out of control these days.

One thing medical in the US does oh so well is send out their bills for payment. We are already seeing the first bills come in for just the discovery part of all this and it's in the thousands after insurance. Even better, that part of this journey started at the end of last year, so the new costs are all on a new year of calculating out of pocket payments. Wahoo!

Remember that part about how I always seem to do things the hard way? Yeah, I'm good at that. Really good.

On the upside, I do have insurance. Grateful for being employed with insurance benefits! Still lots of specialist copays, lots of cost to the scans and tests, lots of bills. The cost of fighting the fight.

Life Is Good

It’s easy to focus on the things happening right in front of us, losing focus on the beauty that is out there in the distance. The iota and struggles of the day-to-day, overlooking the important stuff that actually brings joy and real meaning to life. That’s the way I’m learning to treat the stuff I can’t control with treatments, side effects and frustrations. Those details I may have to look past to see the good.

Signed copy of "Life is Good" by co-author Bert Jacobs

This last week I had a really cool gift given to me. While at an event I had the opportunity to hear a keynote address by Bert Jacobs, cofounder of the Life Is Good company and foundation. I also received a signed copy of their book gifted to me because of my story and desire to attack cancer with good health and determination. Special thanks to Russ for sharing my story with them and giving me the chance to learn their focus on spreading the power of optimism.

I'm reading the book and have almost finished it. I love their emphasis on their basic superpowers and finding the good in every day and every situation. To simplify your life. To have compassion for others. And more.

This is what we all need. This is what I need.

I'll probably write more thoughts on it when I have finished the book, but I'm really digging their simple message and positivity. We can all use more of that. Life is good, and there is so much good to celebrate even when we are fighting the good fight in whatever form that may be. Fight on and smile while we do it.