a post By Judy
I know you guys are used to Alexis making these posts, but I thought I’d chime in every once in a while. But Alexis is a much better writer than me. Maybe she’ll run it through the Alexis-edit and make me look like I can string a few words together.
You all know I love a metaphor and my current one for having cancer is that it’s like government thugs have stormed my house, taken my plain as toast barely used passport and changed it for my new blood red cancer passport. I suddenly have a new citizenship. God knows I didn’t ask for this. And now there’s a membrane that separates me from everybody else.
The heavens are raining anger and denial, guilt, and puzzlement. No one knows what to do, or how to act or what to say. Every doctor’s visit or phone call has brought more bad news. Trying to do research on the inter-webs is a hell hole of depressing statistics (if you want to look at anything I recommend https://cholangiocarcinoma.org/ it’s the home of the cholangiocarcinoma foundation, it’s only about bile duct cancer, and a good hub of information.)
I am gobsmacked by the outpouring of support and love I’ve received.
Alexis has totally thrown herself into making this bearable, putting up the websites, so I don’t have to answer everyone’s individual questions. And the money’s been a godsend. We were going to have to put December’s rent on a credit card (Brian hasn’t been able to work, because he was dealing with his warehouse being demolished) And we have to make our tiny apartment clean and safe enough for some one who’s getting chemotherapy. Obviously we’ll need help with that. I can’t believe in 60 people have given me over $8,500. I don’t even know some of you. I hope it’s not crass, but when I’m feeling down I look at the list of donations and get hit by the love bomb all over again. Thank you from the bottom of my heart. And don’t for a second think I don’t super appreciate all the love and support and kindness from the buckets of other folks who haven’t donated financially. Really, it’s not about the money.
So, now I’m going to talk about the health stuff.
It’s been almost a month and a half since I was diagnosed, I’ve been in the hospital twice, and I’ve had lots of tests, but haven’t been treated yet, the cancer is too advanced for surgery. I had no idea the bureaucracy for getting chemo is so slow, a month and a half, the tumor is twice the size from the first scans, and it’s spread, although all in the same general area. The original, benign biopsy, was only benign because it’s so hard to get to my tumor, so they didn’t really capture cancer cells, so of course, they were benign.
Monday the 25th I saw my Berkeley oncologist, she gave me the preliminary results of my PET scan which showed I do have multiple tumors, and one is invading my liver. The good news is that while the last CT scan showed enlarged lymph nodes, as of the 19th they are benign. And also because my cancer is so aggressive the UCSF oncologist won’t wait for the first round of chemo to start finding a research study for me to enter, that will start as soon as possible.
I’m having another trans-esophageal procedure Thursday the 29th at UCSF where they will try to take more biopsies, the results of which will guide next steps, probably chemotherapy and maybe radiation and maybe more new exotic stuff. We will see. I don’t expect results until the middle of next week.
So, that’s it in a nutshell. We’ll be updating this blog as news surfaces. Otherwise, I look forward to seeing you at the opening on the 7th! Oh yeah, and fuck cancer.