This was probably the best Thanksgiving ever. After some pretty bad news at the beginning of the month, I got the go-ahead to keep on with my insane travel plans to Orlando for a conference, then straight to Reno for Thanksgiving (literally only stopping at the Denver airport to meet up with Peter and Emmie).
The conference went very well, as did Harry Potter-land (if you are a mega-fan, you MUST go at some point. If you don’t already have all of the intricacies and details memorized, I highly recommend re-reading the books before you go so you can catch all of the amazing little details they included). We had about 75-100 people at our presentation, which was extremely respectable, especially since our topic seemed relatively niche. I went to some great presentations and was able to meet up with a few friends, so all in all it was well worth it.
The very last day of the conference, I had worn flip flips. When we got back to our hotel, I realized my ankles were very swollen (and I don’t typically get swollen ankles). I had also had increasing abdominal pain as the conference progressed, but I chalked both of these things up to MANY miles of walking over the previous 5 days, as well as fatigue from going nonstop for those days as well (disclaimer, I really felt well, if a little sleepy, for all of it and I rested when I felt I needed to). So I called my Kaiser on-call peeps, knowing that they would probably be sending me to an ER.
Luckily, I was able to talk them out of sending me to the ER that night (in Orlando, Saturday night ER visit before a VERY early flight did not sound fun at all). But I agreed to go to the ER when I got to Reno to make sure everything was OK, so it was all good. In the airports, I opted to use wheelchairs to get around, mainly because my ankles were still swollen and have you SEEN how big airports can be these days? Not to mention I was feeling pretty tired Sunday morning after waking up at the equivalent of 3 AM Denver time. I only got a little flack from one guy on one flight who was trying to dig for why I was using a wheelchair when I could clearly walk to the bathroom. I did not feel like I needed to defend myself by telling him my whole story, so I just told him I had to go to the ER as soon as we landed. That shut him up pretty quick. Having an “invisible” illness/disability can be challenging sometimes, for sure.
Anyway, once we landed in Reno, we headed straight to the ER, and long story short (skipping over a LOT of ultrasound imaging they did), I was told that I did not have any blood clots, which was the main concern with my leg swelling. I also was told that I was super constipated, which was FABULOUS news because it explained the increase in abdominal pain. Prior to that, I had of course been imagining the metastases taking over everything, but constipation is a MUCH better answer.
The rest of the Reno trip was fabulous. Mom and Dad had some comps at a local casino, so Peter and I had a “mini-vacay” where we had two full nights of glorious SLEEP! We also totally pampered ourselves at their spa (couldn’t get a massage without a doctor’s note, but still had a totally luxurious experience). My favorite part was this salt room that I swear is really a magical nap room. I think I slept almost 2 hours in there! It was amazing.
After that, we got to meet up with a lot of friends and family in Reno. Growing up, we always had Thanksgiving with my dad’s cousins, since they were the closest family we had (as well as my uncle). Now, her four kids have expanded the family with 6 kids of their own (all boys!), and it was truly amazing to be able to have all of them come to Reno for the first time, as well as my uncle, my dad’s cousin’s husband and several other friends of the family. It was extra meaningful because my dad’s cousin, Nancy, was the matriarch of our family, and truly you have never met a more generous and loving person in your life. She ran a nursing home and raised four kids by herself and still managed to be an absolute joy and ray of sunshine. She was the cousin who died from melanoma some years ago, so I think this Thanksgiving had some extra meaning to it for all of us.
Thankfully for me, we didn’t dwell on my sitch too much, but just had the same kind of crazy, wonderful time as always (if a little more grown up, and with more little kids running around).
We are home again now, after some very much needed rest (thank you Gigi and Bapa!), and settling back into the groove. Emmie was a little less sunshine-y trying to re-adjust to not having constant playmates and attention from all corners, but she has been doing well, all things considered. I have to actually work again tomorrow after almost 2 weeks off (what?!?), and I also have my big scan in the afternoon to really tell us what is happening in my gut.
The scan tomorrow should tell us more definitively if the “shadows” on the CT scans were really cancer (spoiler: they probably are). It should also tell us how quickly they are growing, since we will have data points from my Nov 5 ER visit, my recent Reno ER visit and then this PET scan. The info from this will determine if they are growing slowly enough that we have a few months to wait and see if the Yervoy is having an effect (spoiler: we probably will not have that luxury), or if we need to move onto the next treatment. I should also find out soon if I really truly do have the BRAF mutation, in which case I can take the BRAF pills. These pills have a much higher response rate (50-60%, as opposed to Yervoy’s 20%), and should work more quickly to hopefully shrink these bastards. If those don’t work, then I should be a candidate for the latest-and-greatest treatment, Keytruda, which was approved just in September. So there are still a lot of options; we just have to hope that modern medicine can be stronger and speedier than this stupid cancer.