The trial begins
Almost sounds like a Law & Order episode (hi, E)!
Yesterday I was accepted into the ViPOR clinical trial at the National Cancer Institute! More context here if you missed it. It’s a huge relief and as expected I started treatment today. I’ll be here at the NCI for the next few days for an infusion and monitoring, then head home on Monday with a nuclear briefcase full of cancer-killing drugs.
I’ll be back every 3 weeks for infusions and checkups, as well as a two week inpatient stay starting in early July, while they ramp me up slowly on the strongest drug in the regimen.
I also had a really cool surprise this morning. I’ve been on a Facebook MCL support group for the last few weeks and it’s been amazing resource (I’m really thankful Esther found it, I’ve been off Facebook for a few years now). One of the members who I see in the group just completed her run of the same ViPOR trial — before I got here, she sent me a lot of information about her experience and some of the tips & tricks for navigating the NIH. Turns out she and her husband are here at the Center for tests today, and they were having coffee in the big public atrium as I walked by! So I got to meet her and her husband in person and swap stories for a few minutes. She’s a lovely human, and importantly she feels great after her 18 weeks in the trial.
So far all my doctors and nurses at the NIH have been exceptional, and the facility overall is easy to navigate, efficient, and very patient-centric. It’s hard to believe it’s a government institution. 😆 I feel lucky to be here. I feel lucky to be starting a promising treatment without chemo. I feel lucky the hospital food is actually good. I’m going to see a lot of this place and I feel really good about that.
Also a big shoutout to my dad who made the connection here. This all started when he emailed an old colleague whose husband is a big part of clinical research here, and that person connected us with the PI for the ViPOR trial. I can only imagine how hard it’s been to have his son going through a life-threatening disease — so I hope he knows how grateful I am for him, and for all my family and Esther’s family that have stepped up to help.
That’s all for this update. Can’t wait to get back to Seattle on Monday! I’ll leave you with a few photos from my new second home here in Bethesda.
1798!
The Fauci love is real here. Rightfully so! I haven’t seen him on campus yet.
It’s like a small city here — more than 18,000 people work at the NIH campus. Here are some patches for just a subset of the departments onsite.
Phlebotomy fish tank 😁