First of all … HAPPY BIRTHDAY TO TEGAN!!!!! She turned 12 yesterday! So yeah, that would mean 12 years ago today, she was chilling under the blue lights of her NICU bed, while the docs were telling us she was born without a bile duct, etc. etc., and throwing around phrases like “incompatible with life.” I think I might write a little something more about The Legend of T-Dog next week, but for now, all I can tell you is she looked fine whacking the pinata and playing beer pong at her party last night!
As for her knee, we’re kind of in a holding pattern there. We did have a televisit with the ortho the week before last and agreed to follow up in several more weeks to see where we’re at. She’s getting around pretty well with the brace though, and the hope is when we go back in for more imaging, she’ll have healed enough to avoid surgery.
As for me … well, it looks like it’s about time to stop playing doctor and start playing patient. After two weeks of researching, reading medical papers, making calls, etc., here’s where we’re at … I had a televisit with the MSK surgeon on Tuesday evening (this dude’s kinda the Michael Jordan of thymomas – it seems like half the papers I’ve read were authored by him – the other half cite his papers). I started by asking him if I was correct in calculating that in the entire international database of thymoma cases over the past 30 years (6,000+), there are only 4 or 5 that share the same basic characteristics as mine (Type A, Stage IVb). His reply: “Actually, I’d say for better or worse, your case is more like one-of-a-kind – unique.” (What can I say? I always knew I’d be the best at something in life – that I was destined for greatness). Anyway, then we started going back and forth on the surgery option … him saying there’s no precedent, no way to quantify gains, no proof it would even help me, me (ridiculously) trying to make my case by presenting info from papers the guy had actually written himself. Yes, for you A Few Good Men fans, I think at one point he did refer to me as a “a snotty little bastard.” And yes, I believe there was an “I want the truth!” – “You can’t handle the truth!” exchange somewhere in there. In the end, we agreed on a couple of things: my case is unique, it ain’t exactly good, but no one knows what’s going to happen, I need to start chemo asap to try to keep it from spreading any further, and MSK’s Tumor Board (I’m thinking King Arthur’s roundtable, but with oncologists and surgeons instead of badass knights?) would discuss my case in detail on Friday.
On Thursday I went into Georgetown to do my pre-chemo bloodwork, heart echo, etc., and to get the port put in my chest. If you’re wondering, yes, it is kinda cool to have something implanted in your chest so they can easily inject diesel fuel directly into your system. But no, you are not supposed to use the port yourself – like, say, to mainline bourbon or gin at a 12-year old’s birthday party (no, I didn’t, but c’mon, I guarantee someone out there has tried this).
Well, I heard from the MSK surgeon again yesterday evening … the Tumor Board consensus was “if there’s anybody worth considering out-of-the-box, aggressive treatment on, it’s you” Translation: at this point, we’re happy to take a chainsaw to your chest if that’s what you want – anything to shut you up already. Officially speaking, “they are open to including surgery in my future treatment.” So, the plan now is to jump on the chemo train Monday, get through two cycles (six weeks total), and take a scan to see if it’s working – if it is, I’ll probably get two more cycles and then hopefully head up north for the big show (i.e. Michael Jordan extracts the alien from my chest). A lot of unknowns still, of course: Will the chemo even work? Will it work well enough to warrant surgery? How will we treat what’s left after chemo & surgery? etc. etc. etc. But I can say this, we’re very grateful to be where we’re at … two weeks ago we got an “It was nice knowing you” call from MSK … yesterday we got an “Okay, what the hell, we’re game for trying anything on you” call. So, the dust has settled, our path is clear (well, at least until the first bend). Time to let it go and let it roll.
Couple last things: 1. There are quite a few people tuning in that have either had battles with cancer themselves or have been along for the ride with close loved ones. There are a few of you that are in the middle of your own battles right now, even. I want to thank everyone that’s given me advice, encouragement, and inspiration. Very cool. The feeling of going into this with battle-hardened veterans at our side is priceless. 2. I continue to be overwhelmed by the authentic outpouring of faith from all corners of my known world. A lot of perspectives, nuggets of guidance and wisdom, views on how to take this journey. I realize no two people’s faiths are shaped the exact same way, but I can tell you I appreciate every single one of yours and your willingness to share your faith and put it behind our family.
Love, Peace, and Thanks to all …
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