All You Need is Love, American Sign Language, ASL, belly dance, Best friends ever, Emmie, family, FloBots rock, friends, Glimmers of hope, having options is all I want, keeping secrets is hard, kind of good news, love, oncologist, oncology, PET scan, Peter, Rise Up, scans, support, surprises, video
I haven’t been saying much her because there hasn’t been much to say and I don’t want to bum you all out more than even possible.
But tonight I got some moderately good news!
The last time my oncologist and I spoke, our options were basically: 1) Call University Hospital and see if I might qualify for any Phase 1 Trials. This was unlikely, theoretically possible; 2) Go to New York, where Sloan Kettering was running a trial I *think* I would qualify for. If I did this and got very sick (strong possibility), I would be in NYC, which is lovely, but very far from home and everything I love (except my fantastic cousin, Sasha, who has a flat in Manhattan); and 3) Do nothing, which would probably give me the best quality of life, but not very much time left.
However, tonight, I got the faintest glimmer of hope through one of the many doors (or windows?) that have been shut to me! My oncologist called me (I have become very blasé about our calls lately) and told me that there is some kind of trial running right now that I might qualify for! At this point, “might” is the most positive word I’ve in quite a while! Basically, my brain mets have to have been stable for some period of time.
So, at least there is some possibility of doing something! I honestly don’t strongly care at this point if the treatments work (I mean I do), but I mostly want to be doing SOMETHING. I truly hate the though of just sitting around and waiting for the end. Ugh.
So we will see what happens. I had a PET scan today and while it’s highly unlikely, you are welcome to pray for a miracle that the mets shrank. If you would like for prayers that are more likely to come true, pray that I will qualify for the PSL study. Send ALL your juju that way, and especially that I get in the “good” group, haha.
Something else lovely and truly unexpected happened this weekend.
It started that morning, when I got an email from a past patient, making some kind of reference to “I bet your surprise was wonderful!” Or something along those lines. I wrote back, totally confused, but luckily they had spilled no actual details. Then Peter and I were supposed to go out to a fancy dinner in Denver, but I felt horrible, so we pulled an audible and Peter made it a takeout order (ChoLon. Freaking delicious if you ever have the chance. Even as takeout!). We were sitting there, eating our takeout with me in my pyjamas, when two dear friends walked in. One of them looked like she wanted the floor to swallow her up. She looked positively lovely, dressed up and possibly carrying flowers (I’m a little hazy on some of the details, you’ll see why in a moment. So anyway, Peter was completely unperturbed, as he always is, I’m totally befuddled, and they leave. I was honestly not THAT weirded out because a lot of people have been coming by our house to drop off splendid meals. It was more that she was dressed up in a fancy dress.
After we finished eating our meal (again, ChoLon, go there!), I took a little rest because I was getting some pain in my leg/hip area, and laying down is really the only want to relieve it. In a little while, Peter came in and let me know I should probably get up. Based on my friend’s lovely dress, I decided to dress up too (also, it was my “Rent the Runway” birthday dress and the last day I had it, so I HAD to wear it, right? Right!?! Yes. The answer is always yes.
So I still have NO idea what’s going on, other than that Peter has been steering me away from certain rooms (still don’t know about that one). I am pulled over to the edge of our balcony, I sit down, and… Well, I think the video speaks best for itself…
It was such an incredible gift. I truly have the best friends. All of those amazing, lovely, wonderful people (damn, I already used up all my adjectives!) did not know how to belly dance before this whole thing started (Due to some pretty comical mix ups, my actual belly dance friends couldn’t come). So they spent TWO MONTHS learning this choreography (choreographed by a very generous friend of a friend who then put it all on YouTube so people could watch and learn). On top of that, they also learned the ASL for the other song, following along with one of 3 of my coworkers who also sign. Oh! I forgot the very best part! They had gathered some incredible words of kindness and written them on poster board for me to read. I knew I was loved, but wow…
For those of you are are super cool and trendy and exactly like me before I met Jen and Stephen, Stephen is part of the awesome band The FloBots. Not only did they give us a private concert, but Stephen told me tonight that they considered that concert the kickoff to their Colorado tour (which officially