I have now met (via email) the folks who set up the superhero training camp for my Warrior Goddess White Blood Cells.
And they are awesome! And, as you can see from the photo above, they also are funny. They are also super enthusiastic. Also, they ski, most of them learning a little later in life. And they might come out to see me in Park City! A lot of them tried a lot of different things before they landed at Affyimmune, the company behind the Warrior Goddess Super Hero White Blood Cell training camp. They're people brave enough to try new things. Getting stuck in a rut is foreign to them. So, of course, we were made for each other.
To reca, the reason I had to go back to Houston for my Warrior Goddess White Blood Cell Cure in October and November of 2022 was because of small nodules (or nachos, as my brother John unintentionally calls them when he is voice texting, a term I rather like) that had popped up in my lungs. These nachos were "suspicious." And because of these nachos, I was the perfect candidate for something called Car T cell treatment. They pull your cells out of you, reengineer them to recognize cancer cells, and put them back into yo
Car T cell treatment, which I call Warrior Goddess Superhero Training, has been super successful with liquid tumor cancers. However, hard tumor cancers, which is what I've been diagnosed with, were a different ball game.
I was happy with the partial response, but frankly wanted more. And the MD Anderson doctors have been planning a second round but a lot of different stars had to align, starting with the FDA, for which I a study of one. More about that in a different blog post.
Back to finding out about the people who knew me as DL2 #1 and who I knew only as the company name, Affyimmune. Last Thursday MD Anderson doctors said the Warrior Goddess White Blood Cell trainers had asked if I'd talk to them. "Of course!" I said. So my doctors sent me a contact to email and I emailed her Friday night.
Wow. I am still absorbing all they told me about what they do, me and what motivates them!
But here is what I wanted to tell you. They were flabbergasted by the partial response. They, as you can see from the texts copied into the PDF, doublechecked with my doctor, Samer Srour.
But Matt, the CEO refused to believe it. He said it was such a "small dose!" A mere 100 million white blood cells. Finally, they convinced him.
Here's what he wrote me:
"I got up from my desk, walked out of my office, down the stairs, out the front door and just ran about three laps around the building yelling like a crazy person. I was just not prepared for these cells to have an effect at this low of a dose. And because of your bravery to join the trial, we can now dose many more cells because we’ve together proven that it is safe to do so. (And sorry, but until now you were “DL2 #1” to me – “First patient at Dose Level 2.”)"
And then, he paid me a huge compliment.
"Thank you so much for participating in our clinical trial. It is remarkably brave for people with these terrible diseases to sign up for an arduous course of appointments and flights and scans and probes and needles and biopsy and waiting for ICAM-1 testing and waiting again for manufacturing and apheresis and all for a chance to try a therapy that has not been proven to be safe yet, and not proven to be effective yet. Thank you so much for your willingness to fight and experiment and put yourself in a position to have a chance to win."
And then, he read my book! Here is the most moving of many moving things he said about my book.
"And when you wrote, “they are going to send my cells to superhero training camp,” and “…my warrior goddess white blood cells, an army of white-haired women in flowing robes astride white horses, each of them spearing a black knight into the ground” this strange thing happened where water came out of my eyes and it was hard for me to see! As a male approaching 50 I am very unfamiliar with this feeling"
I had to lie down most of the weekend to absorb it all. Of course, I did ski--because guess what, my knee is "rock solid." It was a sprain or strain or something. The ACL didn't work when the on mountain doctor checked because it was just flipped out. But it had calmed down five days later and I learned on my follow up visit that it was whole and just needed strengthening.
I am ordering a new gratitude journal because I just filled it up this weekend!