Allowing Myself to have Hope

I’ve had a few remind me I haven’t posted any health updates for a bit. They aren’t wrong. There hasn’t been much to say being in that space between starting a new treatment and when you measure to see if it’s working. That day of measuring is upon us. As in tomorrow.

Tomorrow we go for a CT scan after six weeks on the Blu-285 (Avapritinib) clinical trial drug. On the clinical trial you receive a scan every 8 weeks regardless of which drug you are on or if there was a period of transition during the crossover. So tonight I’m in Phoenix getting ready for early AM appointments at the Mayo Clinic. Blood draw, meeting with the trial director, and then switch facilities for the CT scan.

Been there, done that, but this time it’s a pretty big deal.

This scan determines if the trial drug is working. If I show more than 20% growth I’m out of the trial and off of the drug. That’s it. There’s some other obscure options out there to try, but frankly this is one of the last of the best for my situation. Some good people have given me names of other things to try, but frankly we need this to work now for some good time and quality of life. If we are under the magic number, then I get to continue on this trial drug for as long as it’s helping.

I’ve been actually pretty well for the last 6 weeks. Prior to that I had a very hard 4 weeks of strong, increasing pain in a way that really made me wonder where things were headed. There have been periods of pain over these 2.5 years of treatment, but rarely more than a matter of days up to a week before it would subside or at least lessen to allow for some normalcy. This was the longest and strongest I’ve had to date. Having a reprieve is welcome, and I’m grateful.

We’d like to believe it’s a sign that the drug is working. That’s hope talking.

See it’s been hard to allow for hope and positive expectations in the last year. From January 2018 when we saw Gleevec was showing signs of failing every scan since has been worse than expected or hoped. Those two words are different of course. We hope for good things, but inevitably we also set expectations even if not consciously. When those expectations are blown apart time and again, it gets rather hard to maintain hope of good results.

The other day I was driving my daughter and her friends to the local reservoir for some fun in the sun and water. They were laughing, joking, and singing…badly. Of course they were clowning around and quite purposefully singing out of tune and funny ways. One admitted she doesn’t sing “for real” around others, choosing to only joke around instead. Several others agreed and it kind of made me smile. Heather and I have talked about this several times how kids will always clown in photos so no one will ever think they were being serious, so they can’t be critical of their flaws, or the flaws they think others see. If you aren’t serious about it, then it’s ok if you aren’t let down if you aren’t hearing good things.

I call it the middle school class photo syndrome where everyone says “oh I look terrible” which of course means please tell me I look good. Remember those days?

So having had so many failed expectations of scans and what they reflect in terms of drugs helping hold this beast at bay, it gets harder and harder to have hope. If I don’t have hope for good results, then I can’t be disappointed right? Perhaps, but that’s a sucky place to be. But being honest I’ve kind of been there for a bit. When you have weeks of extended and sharp pain, it can help foster that feeling.

And yet. Hope still does return.

Spending wonderful time with my family showing them where I grew up, exploring and making wonderful memories together helps fosters those feelings. With an uncertain future, we've made it a priority to get in some of this time together. I want more. More time to make those memories. More time with those I love. More time to live life in good ways. Even mundane ways.

So tonight I remind myself that it’s ok to hope. That doesn’t mean we can’t expect things to be marginal or worse. We can hope that at least it’s good enough to stay on the trial. We can hope the drug is showing signs of working better than those we’ve tried in the past. We can hope for more.

We can hope. And in a couple of days we’ll see if that hope is fulfilled in some measure.