Monday, May 19 - Tuesday, May 20 (Houston)

We've had an affirming and very positive experience here at MD Anderson this week. Yesterday, we met with Dr. Gershenson's nurse, Kimberly, who reviewed my medical history, as well as Dr. Gershenson, who came in to do a pelvic exam. We scheduled a follow-up visit for Tuesday, where he said we could bring all our questions. We chatted with Kimberly afterward, who said she's been working with Dr. Gershenson for twenty-one years and told us how much things had changed in the world of LGSOC; she said this is a cancer that can be cured--the first time we'd ever heard this word connected to LGSOC. 

Today, we met with Dr. Gershenson for a video visit. He gave his summary of where he felt I was based on the results of my surgery, chemo, and now maintenance treatment, and he, too, was very positive about prognosis for many reasons, including the success of my surgery and my age at diagnosis (weirdly, women diagnosed younger than 35 fare worse with LGSOC). When we asked him to talk about "cure," he said the new thinking with LGSOC is that women who go 6-7 years with no recurrence can be considered "cured." He also said that the current stats for the likelihood of recurrence aren't accurate because they're based on outdated data, and that instead of 70-80% chance of recurrence, the chance is now 50% and might go even lower as more data is collected. 

He also said I can consider myself "NED" (no evidence of disease). This doesn't impact treatment or anything, but it was important for me to ask about it for my own state of mind, and to have this as a win as I move into my summer of recuperation. 

To talk to a doctor who leads research in LGSOC, and who has seen thousands of LGSOC patients, and has access to all the latest data and approaches for this extremely rare cancer--and who was able to offer his expert view on what's possible for me--was incredibly affirming. It also made us newly grateful for my amazing surgeon who was able to remove all visible disease during my surgery--these positive possibilities are only realistic because of that success. 

Very glad we made this trip. We'll be back. And now I can continue on with my clinical study and the letrozole and the summer. There will be moments of scanxiety but I think what we heard during this trip will help manage it. 

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All that said, our trip to Houston outside of the actual medical center was up and down. 

Down: Our Lyft driver who picked us up from the airport on Monday was like a parody of a Texan--within sixty seconds he'd referred to the gun he was carrying, disparaged both Hillary and Biden, revealed his lack of belief in climate change by saying "Earth's gonna earth," and said anyone with a subscription to his favorite flight-path app could have prevented the tragic crash in Washington. His monologue was wide-ranging, and we couldn't do anything but smile and nod because we knew he was armed. Andrew, master of small talk with drivers around the world, hung his head in defeat.

Up: We had a delicious Tex Mex dinner at Cyclone Anaya's.

Down: The Lyft driver who took us from Cyclone Anaya's to our hotel was just...terrifying. Terrifying driving, loud violent music. There was no small talk possibility and this was for the best.

Up: We had a lovely dinner last night at a place called Josephine's, featuring Gulf Coast cooking. Fun atmosphere, delicious food.

Down: The Lyft driver who took us from Josephine's back to the hotel came within an inch of hitting a guy on a scooter. The drivers here are terrifying! Even the ones not specified here drove like maniacs. Next time we come we might have to just rent a car. There are lots of cute restaurants to try, and an art museum to check out, and it would be nice to just...drive ourselves.

Up: Our MD Anderson-affiliated hotel, connected to the medical center, was very nice and extremely convenient.

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Final note from our trip: On Monday, with the morning to just hang around and wait for my appointment, I decided to finally get my hair cut. I held onto a good amount of hair from cold-capping, but not enough to prevent the need for a wig/hat; and now the hair I've lost is starting to come back, I wanted everything to blend together. I found a cheap salon nearby, survived a harrowing Lyft ride to get there, and came out with a short cut. It's not pretty, but it's functional, and strangely I look like I have more hair than I did before. There's no disguising that I've been THROUGH SOMETHING, but with summer here, this works well enough. By the end of the summer my short cut will, I hope, look more intentional.