There hasn’t been much straightforward with my treatments or trials. We forge down one path, and when it starts getting too gnarly to pass through, we find another. That’s about where we are right now. My CT scan shows growth of 16%, but Dr Thomas says some areas have more growth than that. 20% is the cut-off for trial participation, and I am toeing that line in a couple of ways. I could have told my NIH team that the tumors were growing. I told several of you that. Exercising, walking, even breathing has become a bit of a chore in the last couple of weeks. The thought of climbing stairs sends me in to a bit of anxiety. Even the hot yoga that has opened up my lungs and heart isn’t doing the trick like it was. Dr Thomas isn’t sure whether the drugs are actually not working any more or whether the two-week breaks I took in July and September to go to the High Arctic and Japan are the problem. For now, I’ll stay on the regimen for a month and get another CT scan right before Thanksgiving. The problem for me is that this drug combo is a stabilizer at best, not a shrinker. That means the shitty way I feel right now from the additional disease won’t get better. To me, staying in the trial, if that’s the case, isn’t a perfect option.
So we’ve started the conversation about what’s next. Immediately, the thought is to clear away some of the lesions that are making me cough incessantly and making it hard to breathe. I’m going back to Dr Simone at the University of Maryland Proton Therapy Center in a week to see what can be done. I think he’s going to primarily look at the tumor that’s now at the end of my windpipe, making me cough. But as long as we’re doing radiation, I would just as soon have him zap some of the other tumors that make me feel like someone has a bag over my head. More to come a week from Tuesday.
As for the medicine part of the equation, no clear path. Dr G has an immunotherapy trial going on at Georgetown that I’ll research. Dr Rajan says there could be a couple of combination drug trials that could fit, but they need a bit more time before I could join. And then there’s Everolimus (Affinitor), which my last genetic test says is a possibility. I think the correct phrasing is “the tumors show sensitivity to the drug,” which is a positive sign. It’s on the market, but my insurance company would have to give its ok. If they don’t, I’ll have to appeal to Novartis (drug manufacturer) for compassionate use. That’s when the Pharma company basically gives you the very expensive drug for free. I was on compassionate use at the end of my last trial because the trial ended. The positive there would be that I wouldn’t have to fly to Bethesda every other week. I’m still weighing upsides and downsides of my options, feeling super lucky that I have options at all.
But I did celebrate another 30th birthday last week, this time in New York with Tiff and Maddie. There were shows (Dear Evan Hansen and The Band’s Visit), a bit of shopping and a lot of eating. (One of my NIH nurses said I must have gained weight because she was using the small arm cuff fo blood pressure, not the XS. This is a good thing.) I got to touch base with one of my best pals from high school and a couple of my lovies from WESH. Nothing like a fun adventure with people you love to distract you from the fact that you can’t breathe so well. In any case, it was just what I needed before taking the train to MD and having to choose which dogleg to follow.
Am I bummed? Absolutely not. I thought I’d be on this trial for six months, and I’m closing in on a year. These creative and insightful (and did I mention BRILLIANT?) researchers are working hard to find whatever it is that’s going to keep me alive AND able to breathe. I am grateful every single day. Now, we’ll look to what’s next. I’m looking forward to easing pressure on my lungs and maybe heart with Dr Simone. And I think I’m ready for some new and different side effects. These are getting tiresome. Onward. #defy
**The title of this post comes from Marc Middleton when he was sports director at WESH-TV and used to play Newsroom Golf. It and the doglegs always made me laugh.