Framing Your Narrative

I’m a procrastinator on many things. Always have been. Writing was second nature during part of this cancer journey, but lately has become more of a bumper to bumper traffic situation, with small spurts of speed but plenty of waiting. Sorry about that. It’s not from a lack of desire, but I easily get out of the habit.

I was mentioning writing an update every day this last week, and just didn’t get to it each day. I’ve had various reasons, all of them pretty valid, but mostly it’s just so easy to not get some things done. Plenty has happened, and that’s probably one of the key excuses for dropping down a written update on the priority list, but I’ll do my best to summarize it succinctly.

January was busy. Busy with every aspect of life, but especially so with some good work gigs and the clinical trial. I’m grateful for the work that brought in some much needed income and often fun experiences along the way. Chicago, Sundance, Silicon Slopes. I’m fortunate to have a wife that has stepped up in our reversal of roles in being the primary income earner, but I’m especially grateful when I can still contribute to our needs and even some wants. It’s in my upbringing to work hard, and I still do whenever possible.

So those jobs and the medical trip to Phoenix at the beginning of the month took 17 days away from home both out of state but some with short evenings when I’d arrive late after long work days. It’s taxing at times, but worth it when it comes my way.

The visit in January was positive and also carried some real challenges. The hydration experiment failed to bring down my bilirubin so I was once again forced to take a break from the medication until reaching under a 3.0. The upside mentioned before was that the tumors had actually shrunk just a middle. I was back down considerably on my bilirubin in just one week, significantly down in fact, and yet there was a prolonged difficulty on getting me the drugs. Finally they elected a “one time shipment” option in a temperature controlled packaging courier service received on Jan 20th. I started the drug again that day, finally.

An additional 9 days that tumors grew unabated. Only 13 days on the drug before the next scan this last Monday.

The results were terrible.

The doctor came in and pulled up my November, January, and February scans side by side and scrolled through them. His first response was “wow, this really grew huge!” Ugh! It really wasn’t a surprise because I had had a lot of pain in that off period and figured it was based on tumor growth. But I hung my head and thought to myself, well, this is the end of the clinical trial. I’ve been on the edge for awhile, but this had to be the tipping point.

We talked through, mostly my desperate reminder that I was off the drug for that time and on the lowest dose, and the doctor readily agreed. Instead of telling me I was done he placed a call (left a message) with the intent of moving me back up to 200mg and trying a steroid with my liver along with some other adjustments. I was happily stunned. Here I was at a point that he would have been justified dropping me from the trial, but he looked at my good tumor response from that dosage level and sought a pathway by going to bat on my behalf.

Just a few minutes ago before starting to write this note, Heather talked about a recent speech she heard that mentioned framing your own narrative. How do you perceive your situation. What do you take away from it? Do you see the cliff you are about to fall over or do you focus on the fact that you didn’t fall?

It was a lot easier a couple of years ago to be positive when there seemed to be a lot of positive happening. I had seen some good results on my first drug, but then it was starting to look like surgery was required as results started to wane. Since that time, every scan since has been worse except the one in January. It showed what can happen when I stay on the treatment longer than one cycle. With the extended opportunity to be on the drug while we tested the hydration theory, I was on for 8 weeks straight despite high bilirubin.

And the tumors shrunk. That’s the positive takeaway and what led to the opportunity to remain on the trial even a month later with much degraded results. So even when there’s a lot of negative that can easily become the focus, there is a lot of positive on which to build.

So once again we seek the positive. I’m still on the clinical trial, albeit on the lowest dosage. Unless I have a lot of trouble this month with my liver, I’ll be back to the 2/3 dosage at the beginning of March. Then maybe, just maybe we’ll see some reduction in tumor size again and negate some of the pain and impact on my overall health. Good things to look toward, work for, and hope for.

Basically I’m remembering again to choose to live, not just in each day and in the memories we make in everyday life, but also stepping into the dark and continuing to have hope and faith that something good will come along to buy us more precious time and quality of life.

I really didn't take any photos of myself recently, so the lead photo is of Mt. Timpanogos from the air coming back from Phoenix.