I was pretty sure this visit to the NCI was going to end with me starting my clinical trial. Knowing that my CT scan and blood tests were coming up made all kinds of symptoms (even symptoms of things I don’t have) materialize. I felt like I couldn’t breathe fully anymore; I had aches and pains; I had less energy; my fingers were going numb. I was resigned. Then, Sheryl and I walked into the building and saw this in the gingerbread house-building competition in the lobby:
I’m not sure why I get a lift out of that stupid song from “The Lego Movie,” but I do. For whatever reason, I started thinking that maybe, possibly, I’d get another reprieve.
So, I headed off to reindeer-ology:
And guess what. My biggest tumor, which was 1.2 cm nine weeks ago has only grown to 1.5cm. That’s slow enough growth for Dr Rajan to tell me I don’t have to start the trial yet. I can come back again in six weeks to be scanned again. Enough for a high five with Sheryl, which I think mildly amused my trials team. The news, of course, isn’t all good. Some areas that only looked suspicious are looking like tumors now. And a 1.5 cm tumor is right on the edge of being big enough to be a must-treat. And Dr Rajan wasn’t comfortable having me come back in 8 weeks. He wanted 6 (I’m going with 5, so I don’t miss the beginning of Sundance. Priorities.) I think the team expects me to start the trial with the new year.
But stalling is a good thing. Dr Rajan has 9-weeks more information about his trials and others. He is liking Sutent for me even more than he was last time because of more results. And now there’s an upcoming immunotherapy trial just for Thymic Carcinoma patients. It’s a few months away from beginning, probably. Options are growing with each passing week for me. It’s all about buying time. It always is.
The good news had me on a train to New York, where I was so excited to meet Maria Mercader, the CBS News foreign desk producer who helped me find and get into the trials. We’d never met. But she spent who knows how much of her time connecting me with the top doctors and the only trials that could help me. How do you even start to say “Thank you” for that? “Thanks for calling in favors for a total stranger on a holiday weekend, therefore saving or at least extending my life?” “Thanks for helping me navigate this maze of clinical trials and bugging the nation’s best researchers and institutions until you/we got what I needed?” God, I love producers.
Maria has survived Thymoma (also a cancer of the Thymus gland) twice and breast cancer once. Some of her friends read about me looking for a trial on a media industry news website and told her she had to help me. She reached out, I grabbed her hand, and here we are. She is as passionate and warm and smart and inspiring as I’d imagined. She said she couldn’t wait to meet ME. She probably has no idea how much I wanted to meet her, to hug her, thank her, and just make real contact, not just through the phone or computer.
The rest of my NYC visit was full of awesomeness and serendipity. We watched the CBS Evening News from the studio, and I became the fan that used to watch me do the news and take a photo on the set after the show.
Elias, one of my favorite photographers in Orlando works at Univision in New York and was able to get away for lunch. Those of you in the business know that NEVER happens.
Elias and I were talking about old friends in the industry, and I asked about my friend and colleague of 25 years, NBC correspondent Kerry Sanders. Back in the day, he and I used to chase news stories all around Florida for our respective stations. Univision and NBC share a building. But Elias said Kerry is never in NYC. He is based in Miami, after all. Again, never say never. Suzanne and I were flipping through the morning news shows the next morning and I spotted the end of Kerry’s report on The Today Show. He was in New York for a few hours, and the stars aligned for a reunion.
I was able to spend a bit of time with a longtime friend from Livestrong, Michael, and friends from Orlando, and most of all with my sister from another mister, Suzanne. There was Wicked, wandering through the shops at Bryant Park, visiting Rockefeller Center and NOT seeing the Christmas tree, and a lot of eating and drinking red wine. It was a glorious two days of soaking in time with smart, funny, warm, adventurous, important people in my life. Longtime friends. And one super important new friend.
I’m no Emmitt (although I do live with one), but everything is awesome. For at least another five weeks.