I’m not exactly sure why I waited until the four hours before I have my next CT scan to pass along this news, as it could be obsolete in, say, four hours, but here it is. My every-tw0-week Georgetown Lombardi visits are about to expand to every-six-weeks. That’s right, the trial that failed for 90-percent of the people in it is working for me; even Dr G, he of the “it’s PROBABLY working” after four months, says it is true. It’s now been ten months since I started the PHA trial, and I’ve had stable disease every CT scan and have made my numbers for every blood test (although that has taken some assistance with stair-running, as you know). So beginning in October, my trips East will be much less frequent. My family may actually have enough time to miss me.
The first reaction I’ve gotten from most people is, “That will save SO MUCH MONEY,” which is true. Southwest’s Medical Transportation Grant has been indescribably terrific, but that money ran out about a month ago. Georgetown expects Southwest to re-fund the Grant next year, but that still would have left me to pay for eight trips, which could have cost me me at least $3,200. Probably more, since three of those trips would have been during the holidays. The “savings” of coming 66% less is welcome, but really it’s the time bank that I am most excited about. It has seemed, for more than a year if you count the cursed Keytruda trial, that I have either been coming to DC, in DC, leaving DC, or planning to come back to DC. The longest I could ever be home was 12 days. I think I did a pretty good job of not letting that keep me from fun travel, but 6 days in Melbourne? 8 days in Bolivia? I can now do better. (Hello, Antarctica! Anybody want to come with?)
Speaking of traveling, I’ve squeezed two California trips into the last couple of weeks. First, San Francisco, where I shot some (mostly medical) stories for Ivanhoe Broadcast News. I love these trips, because I always get to see friends in very cool cities, shoot some interesting stories, and take advantage of opportunities you get in metropoli. For instance, we stayed in an old hotel that used to be City Hall on Market Street. It was right across the street from the Orpheum Theatre. So I went over 15 minutes before curtain on “Beautiful,” which I’ve wanted to see, and I got an Orchestra seat ($157) for $40. Score. There was driving across iconic bridges and running through historic buildings. Next stop for Ivanhoe, LA. More on that in a few weeks.
The second Cali visit was a train trip to see a few friends and ride bikes in Napa, etc. We got off the California Zephyr (which is even fun to say) to stay with Heike in Placerville, which is a gorgeous place (who knew?). Heike is my idol. She’s 70-something years old, lives alone with her dog, Thimble, in Placerville and in Park City. She taught adaptive skiing for the National Ability Center til last year (I was her volunteer). She hikes and travels and does all kinds of cool things. She can and has partied Patrick and me under the table. One time, we finally had to say “Uncle” at 1 am when she and her friends busted out two MORE bottles of wine.Her motto is something like, “you better do it now, dum dum, you might not ever get the chance again.” My kind of girl.
From there, we went to Healdsburg to hang out with Jay and Tracy and Sarah and Joel and to ride bikes though the vineyards, eat amazing food, including the Ahi tacos from Gott’s Roadside, which I have coveted for years, and make a long list of things we’ll do next time we’re here. I can’t believe this was my first time in Napa, but it won’t be my last. Too many places I didn’t get a chance to eat (at). I see why people love it here.
Now, I’m back in Maryland, but staying for longer this time and, again, taking advantage of being in a big city. I went to the Redskins/Steelers (boo!) game Monday night and sit in our family company box, which I love and hardly ever get to do. And as serendipity would have it, our Kilimanjaro lead guide, not to mention the Coolest Guy on Earth, Chris Warner, was in town and free to come to the game with us. We saw Clinton Portis and Matthew McConaughey, but neither was as cool as Chris. Neither were the Skins, who let the Stupid Steelers take the game.
Then, last night, my brother and I took the Admiral to the Nationls/Mets game for his birthday. It was really fun, and Nationals Park is an amazing stadium with amazing food. BUT on the way to the game, I realized to my horror, that I had bought tickets for Monday night, and well, it was Tuesday. After the phone runaround (either the Nationals or the MLB is incredibly disorganized. No one talks to anyone), we decided to just go to the game, where I would throw myself on the mercy of the box office, which I did. I was hoping for them to just trade my tickets for last night’s game, as there were more empty seats than taken ones, but that didn’t happen. Even when I threatened to cheer for the Mets. I had to buy new (discounted, kind of) tickets that did have food vouchers, but a night at the ballgame ended up costing me an arm and a leg AND the Nats pulled defeat out of the jaws of victory. (They beat the Mets the night before, 8-1, you know, the game we had tickets for?). Still a fun night during which I even got to help a little girl find her lost phone.
Because the Universe often needs to prove that none of us has true control (which is ok, actually, who wants that?). the flip side of all this goodness is this: 3… THREE of my friends got new cancer diagnoses in the last couple of weeks. All three have been a part of Livestrong and have (and do) actively worked/work to promote cancer awareness and embody the Livestrong spirit. They are all exemplary, kind, funny, authentic people who have been PART OF THE FIGHT. What is this? It just doesn’t compute. You do and you do and you do what you can to back the Beast into a corner, and it still comes out and draws blood. It makes me sad and angry and incredulous. None of us is doing enough.
So now I’m sitting in the waiting room at Georgetown University Hospital, waiting for my 7 pm (!!!!!) appointment. 2 has become 6, but a Barium contrast solution and some radiation waves could turn it all back to zero. This I know. As always, I don’t worry about it (what can I do?), but as my three friends can tell me, I won’t be getting out in front of myself here. No new adventures will be planned…. At least until tomorrow. Defy.