When I had my transplant, I had that simon & garfunkel song in my head (an earbug?) so much that I downloaded it. It did not bring me comfort--at all. Now when it plays through my mind, I think about the words peppered in about car-t which would NOT be called official by any one, but have been said by the "experts." Words like "success" and "cure." I hear them and disregard the rest.
Did you come for a health update? I had a CT scan last week. How can they keep saying things are getting better? If you are here, then you probably understand this lingo so I will give you specifics. You know a normal lymph node is about 1-1.5cm. Sometimes it depends on the radiologist and how meticulous they want to be, or so I'm told. I had a string of lymph nodes that were kind of "matted" together a few years ago. Evidently the sizes are either the same, or in one case, I went from a 1.4x1 to 1.2x1.
It could be that mashed potatoes taste a little more delicious or that the Cowboys are beating the Redskins. My turkey kind of tastes like it was cooked at McDonalds, no flavor and questionable, but I'm here and I feel fantastic. I have seven client sessions to edit this weekend, I'm afraid to leave the house to have lunch with my friends from out of town (see Howard Hughes level germ-o-phobe referenced earlier) on this black Friday weekend but I'm here and I'm doing it.
I finally caved & deleted some blog posts because I could NOT shake those Russian spam emails. Bad news, they found me again. Maybe I should be flattered, but I'll keep ignoring them, because in GOOD news, glorious thankful news, I've had 4 more CART19 patients find me because of this little blog. In your face scammers! Seriously though, if someone wants to hook me up to go on Harry Connick Jr's new show before it gets canceled, I'll drag Dr's Maloney & Turtle with me. Hint Hint!
Last week I went to Seattle for a football game and returned with a cold virus. Side note, being a football photographer would be a dream job! I've done free lance for some newspapers...just putting it out there, hint hint! Today is my 1 week cold-anniversary and we're settling in nicely. I can't say that I wish I had something interesting to report because no news is good news. I still haven't learned how to blog, so when I get an email like "how do I contact you?" I try to reply directly. "How do I sign up for notifications?" That one, I have no idea. I feel kind of like an open book at this point, but in my email/facebook questions the last few weeks, most have asked about my fatigue and side effects after Car-T. The cold is evidence of one side effect, my "compromised immune system." How I hate that phrase. There are times when I don't even want to leave the house because it seems like a Howard Hughes level of germ paranoia. I have a bottle of anti-bac in the side of my purse at all times (only not at a football game because purses aren't allowed.) Fatigue? probably none. I've never been someone who takes naps and I still don't. I have been an insomniac, and I still am. For that I've amped back up the yoga and it's helping.
There's a lot of exciting advances in immunotherapy right now, so many that I can't keep up. I'll do what I can, unfortunately I had to delete some of my earlier posts regarding study info and advances because--luckily enough--my blog has recently been featured on some type of Russian spam site. Sorry Russia, no offense. It could easily have been Nigeria. Anyway, the point is that some of my posts are getting a TON of traffic. If emails could be weighed, at least a ton. I thought they'd fade away but I don't want to mess with it and they're persistent! Since I really have no idea what I'm doing...I just deleted the posts.