I Need This

The last couple of days running down to the Mayo Clinic in Phoenix were a bit of a whirlwind. On the ground there for less than 24 hours I was riding the cheap seats in the air which mean only single flight options in and out. Schedule was tight, but it all looked good on paper. Doesn’t it always? We can do this.

I’ve had a day now to let it all settle in a bit, including an early morning yoga session I wasn’t quite sure I’d make after a long, difficult night. But I got up a little late with an easy excuse to skip out and with a few moments to take an account of my mental and physical state I decided, I need this. So up I got and felt much better for the effort. That’s usually the case.

Heading down to Phoenix I was keeping my emotions reserved. I had passed the hurdle and jumped the hoops to be accepted into the trial. There is the ever present reality though that if any of my critical stats in bloodwork, urine and EKG are out of accepted spectrum I can be booted out. Understandably they need to know that your body can handle the treatment, and that they can successfully use you in the trial study. Having already had to make a second try and the EKG to get accepted, I was a little worried about what the next test would show that morning before getting the final word.

But I really need this.

On top of that, being accepted to the trial still left open the question of which drug they would put me on. I’ve been working on getting this process underway for the better part of 3 months. Aside from that being ridiculously long consider how fast my cancer is growing, it’s been wreaking havoc on my nerves knowing this cancer is not just blossoming but exploding in my gut. I need to get on something good that will aggressively fight back and tame this beast for awhile if not even longer. The secondary option, if selected, is Stivarga (Regorafenib) which is a third tier option for someone with my cancer type. It’s third tier for a reason and given my obvious lack of success with Sutent I haven’t been too optimistic about that one working.

Applying to this trial though gives me both options. So if selected for the alternate path in the study, theoretically I have the opportunity to use both. If I fail Regorafenib after 3 months I can request to crossover to the BLU-285 (Avapritinib) trial drug. This is why I just didn’t start on Regorafenib immediately knowing Sutent wasn’t working. Knowing how much the cancer has grown in that 3 months does make wonder if this was the right choice, but that’s in the rear view and cannot be changed.

I just need something to work.

Moving on the trip down the afternoon before was uneventful, which is the best you can hope out of any flight right? With some heavy, cold wind and snow that morning I was a bit worried, so grateful we got off the ground and to Phoenix. The Merrills (family of family) who are graciously letting me bunk with them on these trips had some dinner and a couple hours of fun conversation. It’s definitely a bonus having such kindness and personal caring on arrival each time I visit. Having a familiar bed and friendly faces sure helps when getting ready for early morning tests and appointments that will determine my immediate future.

It will all work out, somehow.

The next morning was another early one, headed in first for the required labs. Blood draw for 8 different vials, a couple of urine cups and an EKG, I was actually done pretty early with testing. With an hour to burn until my next appointment I headed outside to take in some sun despite the chilly mid-40s temperature yet to burn off. Yes, Arizonians are correct when they say it does in fact get cold at times. Finally getting to my appointments with the Clinical Trial Director and Physician they reviewed everything and confirmed I am good to go.

Now we ask the computer what drug I get. I felt like Harry Potter waiting for the sorting hat to descend on my head and determine my future. You’d think this would be a quick pull of the slot handle, but it took over an hour to get a response. All the while I’m sitting in the patient room feeling not so patient. My return flight boarding time was drawing every closer and I still had a 50 minute drive plus time to top off the gas and return the rental car.

Needless to say, nerves were jumpy.

When the trial director finally returned with the drugs in hand, I knew immediately the outcome. Her face told it all. She looked dejected on my behalf, and I felt that wash across me. Dang it.

I’ve never felt particularly lucky. If you ever see me choose a line at the store, bank, stop light, etc. pick something different than I have. Even if I pick the line with 1 car and the others have 4, I’ll be behind the person that wants to conduct 10 transactions in their one visit while the other lines breeze by. If there’s a coin flip, I’m somehow going to fall on the wrong side of random. It’s almost comical at times. I seriously ask others to make selections in these cases because I know I’ll get it wrong.

I was on the wrong side of the coin flip once again. Selected for Regorafenib (I’m receiving the generic version) is not the outcome I was hoping for. With now time to sit around for my own pity party I rushed out and somehow made it to the airport to be selected for secondary scan at TSA and fully patted down (of course), but to still arrive at the gate 3 minutes before they started boarding. Small miracles or maybe just a touch of over the speed limit driving. You decide. Maybe a little of both.

The flight back was perfectly uneventful with minimal bumps into Provo weather and some beautiful views as the clouds parted and showed those majestic snowcapped peaks. I never tire of those amazing views from above.

I started the new drug last night in hopes of what it might do for me. The side effects of this daily set of pills (4 of them) is just as awful as always. I’ll keep trying to do all I can to mitigate it with healthy efforts, but some will happen regardless. Nausea (had that night already), fatigue, severely dry hands and feet, abdominal discomfort and digestion problems, hoarse voice and even white hair again…yep just as the black was coming back. The list is much longer, but that’s the essence of it. But even knowing all this, we will still hope it’s all worth it. If it helps give more of and quality of life, then it’s worth it.

Pain has increased quite a bit in recent weeks, undoubtedly due to the tumor growth invading space and pushing things aside. I feel it constantly now. This drug has the potential to shrink it back some and provide relief. Mostly I’m still able to function in a normal way most of the time, and I’m extremely grateful for that. I can do day to day exercise and spend time with family and friends. I am working freelance projects at home and some trips on the books to do events with people I enjoy working with. I hope I can keep doing all that much, much longer.

I need this. I need this to work, at least for awhile. Hopefully longer. I need to have more of good time with those I love and time to make those moments matter. Some of those moments are still just daily life, but even in that there is joy. And if things work out well, we’ll have time to do even more. We need this. Let's do this.