LIVE LIKE YOU’RE DYING

Here’s what happens when you’re flying 120mph toward the earth. Your skin flaps, eyes water beneath the goggles, you forget everything you were told to do at various times during the free fall, your stomach tightens agains all the forces, and of course, smiles appear.

What a fun experience made possible by my wonderful family as an early Father’s Day present. In the spirit of “Live Like You’re Dying” and the chorus being played in my head we tackled the first part mentioned and checked this one off the bucket list. What a day.

It was a significant day and celebration of life in many ways. If you haven’t been following my story updates, the week has been a frustrating one. I had a delayed trip to Phoenix to try and get started on the new clinical trial drug. Flights were changed, but even then due to a mix of procrastination and clerical errors it wasn’t looking good for me getting approved in time to start the drug. To say I was frustrated and irritated would be missing the mark and well understated.

I’ve been in increasing pain over the last few weeks, to the point I’ve had to get on a regular regimen of much heavier pain killers than I’d ever hope to be popping incidentally much less every couple of hours. It’s sobering to be at this point in the cancer progression, but the pain levels and distended belly along with other body feedback only confirm what the CT scan has shown us. In the simplest of terms, it sucks.

But then, as long as I can do something to manage the pain, I’m grateful. With those dosages as needed and getting ahead of what might force me to stay resting I can still get up and about. I can still function, which means I can still fulfill some obligations already on the calendar which in turn lets me feel still engaged, active and alive. It lets me make plans with my family to make some memories, for which I’m even more grateful. And it lets me celebrate life by jumping out of a perfectly good airplane!

My trip to Phoenix was on Thursday through midday Friday. We did all the required paperwork, labs, scans and doctor appointments to start the trial in anticipation of the approval coming through. The trial staff worked very hard to request, beg and plead for everything to get expedited so I could go home with the drug. Some of it came through, but in the end we just ran out of time. I headed home empty handed and still frustrated despite all the effort.

And yet through that effort, an overnight package was received on Saturday with the drug. I had it and was starting right away. Never have I been so happy to get a package of poison and start ingesting it. This is my next chance, and do I ever need this one to work. If we can halt this tumor growth, I hate to get too optimistic, but even shrink it some so the pain subsides that would be amazing. This last week I interacted on a thread in a GIST support group here on FB with a lady that has had 2 years of success with this trial drug after starting in a situation very similar to mine.

It’s possible. Maybe not probable, but possible.

And for now that’s what all we can hope for and we’ll take it. The slivers of hope seem to get slimmer and slimmer with time and progression, but finding anything on which to feel like we can make and effort and have hope for relief, quality of life and most importantly an extension of life is what we seek.

Up next Rocky Mountain climbing and riding a bull named Fu Manchu fo rat least 2.7 seconds. Who’s with me?