I am CAR-T19

15 minutes

15 minutes

My worldwide media blitz is coming to an end. I completed a slightly uncomfortable interview with Univision in Bogota, Colombia. Columbia? Colombia? Wherever Bogota is. Uncomfortable because I speak nada of Spanish. Uncomfortable because this was the interview where I began to realize a trend throwing some “gotcha!” question in there like “how much does something like this cost?” I have no idea. I have insurance. That’s not to say I didn’t have out of pocket costs, of course I do.

My fun takeaways from the TIME interview:

  1. my family also thought that was an unflattering pic and publicly apologized on social media for my sour puss face (time insisted no smiling.)
  2. I was asked for my autograph! Hilarious.
  3. I won a $50 bet because not a single person ever recognized me after what some family members REALLY believed was going to be a huge recognizable thing. REALLY happy to win that.
  4. This is the BIG one. I did NOT NOT NOT have high dose chemo to prep for CAR-T! I don’t know how or why there was confusion over that, but it’s wrong!

I was asked how I wasn’t ANGRY. Repeatedly during interviews I hear the term “guinea pig.” I’m not going to get on a soap box on how “angry” that phrase makes me. I guess that’s one way to look at it, maybe it never occurred to me because I’ve never felt like I’m living a practice life. This isn’t my dress rehearsal. I’ve been my own guinea pig my whole life.

I did a local newspaper interview which the AP picked up…my grandma totes that around and tells anyone who will listen that the Fred Hutch drs are the “new specialists” in my little burg. No Grandma, not quite.

I will apologize for being so generic, but my own personal results continue to be ridiculously normal. I don’t know the status of every patient in the study but I know I’m not the only one who has had continued complete success. It makes me so happy!

If you’re just joining me, this blog is pertaining to my participation in a CAR-T immunotherapy clinical trial. CAR=Chimeric Antigen Receptor. T=T cells. The re-engineered t-cells target malignant (and non malignant) cancerous b-cells of my non-hodgkin lymphoma.

The light rail goes all the way to UW now!

Gratuitous pretty Seattle shot. This city really is great.

Gratuitous Seattle shot I took on my last visit a few weeks ago. This city really is great.

One thought on “15 minutes

  1. Heather

    how can I receive notifications re your updates? My dad had this treatment at MSK in 10.2013. I’d love to compare notes

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