I could make this the shortest post ever, by just typing “Thank God,” and leave it at that. That really does sum things up today … but if ever there was a post that deserves a few words, it’s this one.
Five months ago, I sat in my truck up at the football fields, waiting for a call from the docs at MSK. As you may remember, the call came in, the doc started with the word “unfortunately,” and ended with the words “I’m sorry.” We don’t like the P word (p***nosis) around here, and I’ve steered clear of crossing that Rubicon in these posts, but I can tell you that was probably the worst day of my life. For the past five months, the messaging has kind of remained the same, more than a few “unfortunatelys” and “I’m sorrys.” As of this weekend, the situation was as follows: 4 months of chemo hadn’t touched the cancer but instead just damaged my heart and made me look like a 95-year old baby; there was no clinical evidence other types of chemo would perform any better; molecular testing of my tumors showed immunotherapy wouldn’t likely work for me and ruled out almost all clinical trials; the only clinical trial that did have a chance of maybe helping had just been cancelled because the drug company behind it is in financial trouble; no one wanted to try surgery because, well, I won’t even try to explain that; in short, we had no good options. The doctors (and I’ve been fortunate enough to have some of the best out there) didn’t know what to do with me, really. They said there was no playbook, no standard of care, because thymomas are one in a million, and my particular type and the way it’s behaved is one in a million on top of one in a million.
Fast forward to today. This morning I waited for another call, from another doctor, and for the first time in a long time, we got a message of hope and possibility. What’s happened over the past five days has been … well, almost hard to believe. It involves a doctor from Italy, who’s maybe the world’s foremost thymoma expert, a chance encounter with this doctor via Briton’s boyfriend’s grandmother’s friend (thanks again Logan, Amanda & Dave, and Moomoo), another serendipitous connection (the Italian doctor actually recruited my G’Town doctor years ago, and they still talk once a week), and a lot of prayers that God would guide our research, self-advocacy, and all the doctors involved. The result: I’ll be heading up to NYC in a few weeks for the surgical team up at Weill-Cornell to take the primary tumors out of my chest. While they’ve got me cracked open, they’ll try to pick off some of the lung nodules they can get to. At some point in the future, they’ll likely hit some of the other nodules with radiation. There’s a chance the remaining stuff in my lungs will grow extremely slowly. In the meantime, Dr. G, our new Italian friend, will take my tumor and study the heck out of it: genome sequencing, trying to get it to grow in mice, throwing it against a wall to see if it sticks, all that fun stuff. They will learn all they can from my cancer to expand their knowledge for other patients and just maybe discover something that helps them treat me.
We have a long road ahead still, and there will surely be plenty of bumps along the way. We’ve done our best not to get too high or too low throughout this journey, and with that in mind, we acknowledge the simple fact there are no guarantees regarding this new plan—the doctors themselves don’t know what’s going to happen. But we have a road now, and we’re hitting it. Today, God answered a lot of our prayers and granted mercy on us.
I always hate to thank anybody specifically because we’re so thankful for everyone and there are so many phone calls, texts, etc. that have lifted my spirits at just the right time. But I want to mention a couple guys who’ve loomed large throughout my life and did so again this week. First, to my man Z, who became my friend a whopping 45 years ago (when we hit first grade together). Z showed up at our house on his own birthday this past Sunday. He gave me some “hey, I’m gonna be out your way running errands” BS, but the truth was he just knew I was in a hole and maybe needed some back up. Anyway, thanks for giving me the space to entertain some of my worst fears out loud, brother. That always sucks, but sometimes you gotta let that stuff out to be carried away on the wind. Second, to Don P., who’s always been somewhere between a “brother-from-another-mother” and a second father to me, but who’s actually my uncle. You’ve stared into the abyss a few times, and your faith, experience, and wisdom brought great comfort to me this week. Thanks Don.
And finally finally, as always, thanks again to everyone who’s been praying for us. I’m blown away by the amazing love and support and friendship we’ve been blessed with and the awesome examples of faith all around us!
We’ll be in touch with the details on our next vacation to NYC. Until then, peace out, and … thank God!