I said after the summer I was happy, that I was ready now, I got my time in and I could take what life throws at me (which makes me LOL in retrospect because I did break my arm 3 times and still considered myself very happy).
I agreed to go on a clinical trial (ZW25) that only had less then a hundred participants in the world (talk about taking a chance), because if I could, I wanted to keep my hair. I didn’t want harsh chemo side effects. I was ready to feel more normal, less sick, blah blah.
My first treatment came and went and as I waited for side effects, the days passed and the side effects never came. A few treatments later I was still #blessed enough to have nothing more then an acnelike rash on the side of my face and back of my head, both which were easily manageable.
My first set of scans showed my body and brain stable and that was a win! This was in October or so.
I had another round of 6 treatments and I was able to not only attend - but have fun - at two of my friends weddings, a Montreal bachelorette, my birthday, and a Christmas Party.
On top of this, a little birdie told me that this trial was in such demand and so effective that doctors at the General were taking notice and investing.
I won’t lie. I let my usually sensible guard down and thought, maybe this will become a chronic disease for me. Maybe this will give me more time. Maybe I can keep living this way!!! Maybe I’ll see sand, oceans and holidays again!
I had my scans two weeks ago (if you’re opposed to drinking the Barium dye then you’re a baby) (joking) (not really time to stay quiet about it and SAVE YOUR LIFE). I got my results the week after and I didn’t even tell anyone! I was really confident. Turns out I should’ve been more prepared, because although they weren’t the worst, they weren’t the best either.
My scans from the neck down don’t show any new spots. My liver is still clear. Three spots have grown a few mm though which is considered progression. They’re going to scan again in one cycle (six weeks) and if it continues to look worse they pull me off of the trial.
Ugh.
Future Sam problem.
As for my delicate brain, it isn’t as important in the trial but it’s still VERY important to me. This week I’m supposed to have an MRI, and although optimistic, I was confident about my last scan too. We’ll see!
Hopefully we can have a very Merry Christmas; with cocktail dresses, gin, and lots of good food. I want my biggest choice to be whether to eat all the breakfast casserole, shortbreads, or pistachios. Let’s be honest though - I’ll eat all three.
With my ‘positive thinking’ I planned ahead - something I don’t always love to do, admittedly - but I’m going to see Kacey Musgraves in January, My Favorite Murder (podcast) in February and in March... seeing Ariana Grande and Dear Evan (musical!!).
Throw in some hot trips and I know I am spoiled and it is fully appreciated on this side. I don’t take anything for granted. We are able to live this way when many others aren’t, but in turn, we’ve had to make major sacrifices too. Whenever I think about a future career, family, house... I know that isn’t in the cards for me.
Feeling fancy at John Legend
Another post will have to come about my experience with the Do It For The Love foundation, my never ending fight against take home cancer drugs (politics let me take out my angry side... what can I say?), trying out new unproven brain treatments (think cannabis and not turmeric...) and a little bit more of a life update.
& if you have a special remedy for sleeping. Hit me up. #4everawake
xox
Sam
