Allow me to pilfer Sheryl Crow lyrics to head up this post. The song has been bouncing around in my head for a couple of weeks now. That and David Bowie’s Ch-ch-changes. Guess what: Changes in my protocol are looming. And that’s a good thing.
I haven’t altered my lifestyle much except for the intensity of it. I’m still in boxing, Orange Theory, hot yoga, Pilates… I just can’t go hard. In fact, my max heart rate pretty much tops out at 117 these days. This from a girl who ran the whole Steamtown Marathon at 180 beats per minute. It’s not even that I CAN push harder than that. I’m sure I’d keel over if I tried, which Dr Simone, the Proton Therapy expert, says is correct. (!) I cough pretty much all the time, and I can only fill my whole lungs with air a handful of times a day.. The worst is first thing in the morning. Can I ever make my cats scatter! Something has to change, because living like this, feeling like this, well, it’s not awesome.. As Patrick said the other day, “You don’t even remember what feeling “fine” means anymore.”
So last Tuesday, I spent a good amount of time with Dr Simone at the University of Maryland’s Proton Therapy Center in Baltimore. He says although the amount of tumor growth I’ve had in the last few months isn’t overly impressive, the directions and places it is growing is bad. We’ve been here before. Remember when the tumors near my spine could grow 350 degrees in any direction, but if they went toward the spine, there’d be pain. Yeah, that. So the three tumors around my heart are squeezing the right side, squeezing the blood vessels over my heart, and squeezing into the heart muscle under my heart. On top of that, the lesions in my lung lining are irritating my lungs, and now I have a bit of fluid in them. (Hello persistent cough that makes people turn away, even when I tell them they can’t catch what I have.) Dr Simone doubts my trial meds are working so great anymore, which I acknowledge. He suggested trying a full-on chemo like the CarboPlatin I was on in 2013, but I said no. He said chemo for Thymic Carcinoma is 60 percent effective and my trial drugs run much lower than that. I said no. He said I don’t have to decide now, but keep an open mind. I said maybe. I go back to the NIH next week for an early CT scan, and we’ll see if there’s been any new growth in the last four weeks. I say, probably. So a new systemic is most likely coming my way by the new year.
Until then, we are veering off the road for Proton Therapy or VMAT, an even newer very targeted radiation. Dr Simone told me 10-20 treatments, once a weekday, which means two to four weeks. After that, he told my NIH team 10-15, which, do the math, is 2-3 weeks. What this means is that I’m going to miss half or all of December at home in Park City. I’ve been traveling so much since the beginning of the summer (averaging about 9 days at home a month) that I have really been looking forward to not going anywhere at the end of the year. So much for the best-laid, though never solid, plans. I actually can’t wait to get started, if you can believe that. I don’t think I could start much earlier than December, since this potentially dangerous heart radiation plan needs lots of planning time for people who are much smarter than I am. But if I could cancel the rest of my November trips to get under the big beam sooner, I have to say that I probably would. Even though it would mean missing a week in Belize with my niece, Jen, and another passport stamp. But don’t worry, Jen, I am ready to get sunburned! (I told Dr Simone I was going to get sunburned, and I got That Look. You know it.)
So for now, I’m making plans to be in Maryland for December, hoping to get back to Park City for Christmas. I’m going to take the train up to New York, see Capitals and Redskins games, and take a lot of yoga. After next week, barring a miracle that CRLX 101 is working, I’ll start to weigh systemic options for what’s next on that front, actually keeping my mind not open, but cracked, to the possibility of standard chemo. (Can I tell you how many times I’ve said NEVER to that? See above: Best-laid plans.)
And for now, I’ll leave you with pictures of two things that made me very happy this last week. But probably not as happy as being able to breathe better and push my training harder will. #DEFY