Tag Archives: non-hodgkins lymphoma

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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.

cart19 cure

A brief history:
Last week I arrived, officially for my participation in cart19. This treatment is so new and evolving rapidly so the forms I had signed a few months ago were no longer up to date. I had a meet and greet with everyone involved and even got a status update on how my t-cells are doing in the lab. They're doing great, thanks for asking. I will be having 1/3 less chemo, yay! I will be having significantly less t-cells also...hmmmm. Yay? The chemo is to suppress my existing immune system so my new fangled genetically engineered cancer killing t-cells can get in there and get to work!

Did I mention this is a clinical trial?! I can not cruise into Walgreens and buy some new t-cells. This is an experimental therapy. I want to make it clear that I'm not condoning or encouraging anyone to use my info as medical advice.

There is a fair amount of prep work that goes into this. My one week schedule of appointments is 7 pages long. I had my own t-cells collected months ago. Things like a CT scan, bone marrow biopsy, echocardiogram, etc are all needed to get a baseline. That good old bone marrow biopsy. Now, if you're reading this, you probably are familiar with the joy of one, or have at least heard about it. For some reason, I detest the bone marrow biopsy. I am enthusiastic about this trial though, and if that's what it takes, then sign me up! By sign me up, I mean I hesitantly agreed and then made 3 phone calls trying to plead my case to not have it done. Unsuccessfully.

Yesterday I had my first ever heart echo, which conjured up visions in my head of dye, wires, maybe lying on my back on a cold table. Wait, that may have been a movie about alien abductions. I'm happy to report it's actually nothing more than an ultrasound of the heart.

bee (1 of 1)One day closer.