Before I launch into what could be the longest post ever, here is the news everyone is likely waiting for: The appointment at Memorial Sloan-Kettering went as well as we could have hoped, which is pretty well. The doc was wonderful, answered all of our questions, and gave us a pretty good roadmap of our options. Only one treatment option is very likely at this point, but if the Beast comes back, we know what our second, third and fourth steps could be (and that there are steps even beyond those we didn’t even touch one)
Also HUGE information that I got: my melanoma has one of the most common mutations, the BRAF mutation. This doesn’t mean that *I* have this genetic mutation, but that the tumor itself does. Did you know that cancer have genes all their own with their own genetic mutations? You do now! I need to do more research, but as far as the doc said, this doesn’t necessarily have any implications for prognosis, but it does have implications for treatment options, specifically that I can take some BRAF pills, if needed (not the first step!).
Even though we have a possible first step in treatment, we don’t really know what, if anything, Kaiser will cover. The MSKCC doc recommended we start with ipilimumbab (Yervoy), if we do anything, which it sounded like there was a chance Kaiser *might* cover, which is awesome… or could be awesome, anyway. Everything else is a “not yet” step, which hopefully, I never ever need (fingers crossed this bastard never comes back!).
One of the best parts of the visit was the fact that this wonderful doc essentially confirmed and elaborated on everything my primary oncologist recommended (and he also told me “You’ve done everything right. Don’t second guess yourself,” which was very helpful for all those woulda-shoulda-couldas I’ve been having). Even better, he offered and followed up on contacting my doc here and is available to consult with him as needed (!!!). So unless something drastically changes, I can see my doc here, but still get the benefit of his expertise from afar. YAHOO!
Being an expert at the #1 cancer hospital in the country (and world?), and only seeing patients with melanoma, this doc had the benefit of LOTS of perspective for me. Basically, he said “While this undoubtedly sucks, it could be *so much worse* and you have a lot to be thankful for (but it still sucks).” He also reminded me that there are people out there who have had a small amount of melanoma removed, like me, and then never have it come back. How’s that for motivation to eat right and exercise???
All in all, it was really an excellent visit.
The only bad part of the trip was that Peter managed to have the universe decide to crap on him yet again. As we were boarding the plane, after Peter was seated, a man’s bag strap broke while he was putting the bag in the overhead compartment and hit Peter on the head (EXACTLY what Peter has been trying to avoid for the past 7 months). He spent the rest of the flight pretty out of it and with a headache. A few calls to the doctor later and we earned ourselves a visit to the lovely Mount Sinai Queens ER. My dad got a second doctorate, this time in sociology, while waiting for us, and Peter got a relatively clean bill of health (i.e., no bleeding, rest and take Tylenol for headaches).
Very, very happily, it seems like the effects of this hit on the head were MUCH shorter lived than the first, and he appears to be more or less back to his baseline before the second hit (THANK GOD). This is nothing short of a miracle, considering that New York is exactly the wrong kind of place to be with a concussion. There is literally nowhere you can go that is quiet, there are always people all around (usually talking, very often in a foreign language), and there is a lot of sensory information *everywhere*. On our last night, after Peter was doing a lot better, we walked through Times Square at night (we had to go that way to get to the theater). I about died myself from the CRAZINESS. It was nothing short of a miracle that Peter made it through without passing out.
OK, I am too tired to do the whole shebang tonight, but I will *really, really, really* try to write everything out this week. I don’t want to forget all the crazy, wonderful things that happened on our trip, so I need to write them down before they are washed away in the minutia of daily life.
Thank you so, so much to everyone who made the trip to Sloan Kettering a reality. It has given my heart peace to know that there is something we can do (with relatively minimal side effects likely), and to know that we have spoken with as much of an expert as possible and I don’t have to wonder if there is something out there that I should be doing.
Now: Sleep and somehow tackle the week ahead with absolutely no preparation. We may all be eating cobbled-together lunches and wearing the dregs of our clean clothes, but we can make it!
Pictures coming soon!