Maybe I just like the perfection of timing of it, but I am ending 2018 in the most perfect way. December 31 was my last Proton Therapy session. That’s 20 down, 0 to go, if you’ve been counting along with me. I got my discharge papers, my graduation certificate and photos of ringing the Bell of No More Radiation. A couple of days ago, Dr Simone said that the X-rays they use to make sure I’m in the right position before proton therapy sessions show dramatic improvement in the tumors around my heart already. Good news, because the tumor retreat continues apace for two weeks, and could continue for months. I still won’t sign up for a triathlon, but maybe a 5K is in my future. Definitely some Nordic Skiing where I can go forward for more than the length of a car before taking a break. (I joke, but probably not much.) Psyched. (UPDATE: No update on my insurance fight. Still waiting for a response to the external review I requested. Already lining up my “What comes next” team, if it should come to that.)
It was also a perfection of timing that I spent this Christmas in Maryland. I got to spend a lot of time with my nieces and nephews and lots of family. My little nieces and nephews have grown up to be some of my best friends, a terrific and priceless evolution. It was a great Christmas to be here, with countless memories, presents, and a LOT of food. (The food part? Still in effect.)
My third weekend here, I didn’t take the Amtrak anywhere. My sweet friend, Andrea, has been wanting to come and just hang out for one of my MD doctor visits, and this time, again, a perfection of timing. It’s a period in my endless therapies where I feel truly almost fine. As close to fine as I’ve been in years. Andrea flew up from Orlando, and we spent a couple of super fun days exp0loring Baltimore.
We did a lot of eating (duh), going in to parts of Baltimore I’ve never visited, and ending our days there with a trip to the National Aquarium, which I couldn’t love more. My brother, sister-in-law, and nephew Chris came up for that, too. Seafood, Italian food, and lots of laughs and conversation (We haven’t solved all the world’s problems, but we made great inroads into identifying most o them.) Life is good, and opportunities for a future continue to present themselves at the most opportune times.
I hadn’t heard from Dr G at Georgetown’s Lombardi Cancer Center for a long time, but he emailed Saturday night to check in and see what was happening. I told him about the proton therapy and asked about the targeted drug trial he’s running that I’ve been interested in for more than a year, at least as a back up. Turns out the drug is a tough one for participants. And the arm of the trial for Thymic patients is on hold until they get more data. BUT he’s going to Italy to work with some cancer doctors and says there might be a couple of trials there that might be options down the road. I, of course, offered to fly over and meet with the doctors. He said he was going to find out if the trials can be exported to the US. If not, maybe some time in Italy might be good for me! (That’s me talking.) Discoveries and trials in cancer research, at least for me, are growing geometrically. It’s just a matter of staying alive long enough to take advantage. That’ll be my resolution for the new year: Stay alive long enough to help researchers help me. And to make my insurance company pay for my care. Ok, that’s two.
Tomorrow, it’s back to the NIH. I’ll get labs (blood tests) and a CT scan to see how the rest of the tumor family is doing. My team (and I) will decide what to do about systemic treatment: Whether I stay in this trial (doubtful, but I’ve said that before) or find something new. I know I was right at at 16 percent tumor growth before taking a drug sabbatical for the proton therapy. 20 percent is the growth measurement that’ll send me packing. I also know that a month without drugs most likely means my tumor growth will be more than 4 percent. And I know that at least two of my systemic options involve standard chemotherapy drugs, the thought of which makes my stomach, brain, and hair cringe. I have to pick something, though, and I am blessed that I have options even though I don’t like some of them. More on that in a few days.
For now though, I’m going to celebrate the end of my proton therapy, enjoy the last couple of days with my family, and be happy that Slapshot came to our row at the Caps game (he never visits our section). Tomorrow, I’ll have more information to help me decide the direction my life will go, at least for the next little while. I am in a space where timing has been fortuitous, so I am (as always) optimistic to launch into new uncharted waters. Happy new year! #defy with #hope and #gratitude.