Phoenix Take 14

Sitting in the airport after my latest trip down for this clinical trial headed home. I’m at the airport early, so I figure it’s time to do some catching up. This is my 14th trip, which makes 28 flights around participating in this clinical trial at the Mayo Clinic in Phoenix. What a crazy ride.

First, I know I haven’t been writing updates. I’m sorry for that. The motivation to write just kind of dropped away for a bit, and like any good habit once lapsed tends to remain so. I do enjoy the process of working through my current thoughts along with a log of what’s been happening, but it’s been difficult to find the highlights a bit lately.

My treatments have been a rollercoaster in the last few months, mostly working on an overall slow decent. My liver just isn’t handling the medication I need to keep the cancer at bay. Every trip to Phoenix at the Mayo becomes an anxiety driving event where I wonder what’s in store for me. What will my bilirubin count be? Will they mandate a break from the drug again? How much growth is taking place during those breaks? Does it exceed the max 20% growth from starting treatment (which will bump me from the trial).

All that goes through my mind constantly. Much more than it used to. Consequently it fills empty space leaving little room for positivity. Not my finest I must admit.

Heather wrote me a note as I left on Sunday for this medical visit with some reminders to remember the positive. Despite the treatment not following an ideal path, it has provided me with some slowing of the cancer growth. Before getting on this drug Avapritinib, I was doubling tumor size in just a few months. This latest scan showed just small growth in a few areas ranging a centimeter or less. Most of all we are hoping for buying time. Finding opportunities to continue treatment so I can spend that time with family and the upcoming plans we’ve made.

Looking forward a few months or more seems so much harder now with the way I’ve felt on this treatment, especially having to drop off the drug every 4 weeks or so. My overall weight has risen, my strength down, fatigue up, and my hair all going white again; and all that hits in all the wrong places when it comes to maintaining an upbeat attitude. Doesn’t mean it doesn’t happen, but that’s the pushback.

The liver has been my nemesis, but I’m finding more and more that anyone on cancer tends to deal with liver trauma. Sadly some have passed recently and the liver was a part of those final days. My heart goes out to those that lose loved ones to this crappy disease and it’s many forms.

Most days are pretty good considering it all. I sleep a bit more and daily there’s some rogue pain or discomfort that crops up. I’m still able to get up and work some photo events for which I’m grateful. I’m still going on dates with my lovely wife, for which I’m even more grateful. And time with my girls on the whole can overcome any negative currently in my world. We continue to make plans and hope for the best. Thanksgiving with family in Colorado. Senior trip for Allison over spring break. Spencer coming home from his mission in April. Family get together the end of next summer. All the good things we want to do, and hope I’ll be in a good place to be enjoy all these things.

I’m also grateful for those friends that have reached out to keep me engaged. Cycling, riding, lunch visits, etc. are all appreciated. Keeps me from closing down and isolating myself further. I’ve gotten much more sedentary in the last few months and as I sit and write I’m mentally committing myself to picking that back up a bit again. I’ve been doing some spin class, but not much else than the occasional dog walk. I’m pretty confident if I can step all that back up a bit (within reason) I can get the symptoms a little back in check.

So back to not writing recently. I’ll commit (not just try) to doing better again. With all that happens in life, I tend to want to wait for something good to report as the catalyst for an update. As in, there’s been some bad, but now we have this good to focus on and discuss. I need to remember to find the good in even smaller things and keep up the good habits. Today is my first attempt at that because I’m still waiting for the test results to be reviewed, my bloodwork, and approval from the trial sponsor to continue…but here I am writing something at least.

Thanks to all those that checked in online and reminded me that there are people that care to hear what is happening. I’m still here, still kicking, and still fighting the good fight. There will be a point in my journey where my efforts and results will change, but we are not there yet. I still choose to live!