See ya at the end of October, Georgetown! Since I posted last, I have passed two blood tests with flying colors. I think I’ve come up with the winning pre-test cramming session. I take the 5am Orange Theory class,don’t drink anything after, drive to the Lombardi Cancer Center, run up and down about 7 flights of stairs, then have Jeannie take my blood as fast as she can. Roll your eyes if you want to, but it’s yet to fail. It’s worked so well that I “only” have to come back to DC for CT scans, and that’s once every six weeks. It’ll almost be Halloween before I return. Nothing scary about that!
I’m in the middle of a Wendy trip, multiple stops and this time, two weeks Away from home. I’m somewhere over North Carolina, I’m guessing, inexplicably in seat 1D, even though I again forgot to check in early on Southwest and was in the high B’s. Squirrel. Nut. I’m not complaining. I’m on my way to Orlando to host the Canine Companions for Independence Gala and do some Growing Bolder work, and I’m coming from Indianapolis, where I finally got to meet Dr Patrick Loehrer, completing the Thymic Carcinoma triumvirate.
When I was diagnosed the first time in 2013, I learned that most cancer centers, including both of mine, have never seen an actual case of TC. I also learned that there are three doctors in the country who can actually be called experts in the field. Two are in the DC area where my family lives (Dr G and Dr Rajan at the NCI, my first doc); the third is in Indy, at the IU Cancer Center. And I went to IU. So when my Pi Phi girls planned a football weekend ( more about that in a minute), I reached out to Dr Loehrer to see if I could come say hi. Some, ok, most of my motivation is so he’ll know me should I ever need him, which is likely. The PHA drug won’t work forever.
Dr Loehrer insisted that he have all my TC records. I couldn’t believe it, just so I could say hi? That’s three years of documens and scan DVDs from three hospitals and the NIH. I’d never gather all that in two weeks. It actually took one phone call to each institution and just a few days. No rookies there. And he gave all of it back to me, so for the first time, all of my records are actually in one place. In a box I express mailed to myself in Park City. But I digress.
Dr Loehrer was great. He gave me names of drugs to research and told me I’m not categorically out of future immunotherapy trials just because Keytruda gave me Diabetes (really good news). He agreed with both Dr G and Dr Rajan (who I saw when I picked up my NCI records) that I am on the best treatment course right now and should stay on it as long as I can. And we talked about Chris. She was one of my sorority sisters who was diagnosed with a thymic cancer that killed her seven years ago. He (and Dr G, yesterday) said it’s odd that two women who lived together for three years would both get versions of an incredibly rare cancer. Two’s not a cluster, but it makes professionals’ antennae go up, for sure. And it makes me realize again how lucky I am to have been diagnosed when I was, when there were trials that give hope. I don’t think any of that existed for Chris.
The reason I was in Indiana at all was because of these girls:
They’re sorority sisters from IU reunited again in Indy and Bloomington. It was return to Nick’s,
To 328 E. Third Street, where we lived for three years:
And to the stadium, for the game. Which we lost, just like I remember from the early 80s:
It was such a fantastic weekend that made me relect on true friendship, one that lasts for 33 years, even when years pass without seeing each other. I love meeting and making new friends, but this group has been through life together: Beginnings and endings, births and deaths, marriages and divorces. I don’t have to give background on stories, just developments. I don’t have to think twice before I say something , because there’s no judgement here. Ask for anything and it’s yours; actually, you don’t even have to ask. It’s most likely already been offered, times three. I can’t wait til next time we gather!
And one final update On my upcoming Antarctica trip. My 70-something, adventurous, incredible friend, Heike, is coming with me. I am so excited to have her along. She has had so many adventures and has been so many places; it’s going to be phenomenal to go somewhere neither of us has been. Much more on this to come. #Defy!