Hm. What should we do tomorrow? Maybe take a BRAIN TUMOR OUT?
Cool. Good idea. I'm on it. 12:50 my time. Let's let these magic surgeons go get it.
I chopped off a chunk of my hair a few minutes ago to remember the first 35 years by. I told Noah my silly doctor is going to give me a matching haircut to him and won't that be funny? He is weirded out by life at the moment but did crack up. Aaron has learned to eat real chunks of food over the past few days so his diapers are gonna be SWEET for all these extended caregivers while I'm out. Ha!
I got letters from Mormon friends yesterday and dinner dropped by from my Jewish personal trainer tonight and my church I grew up in had a bishop in town today and my cats just snuggled me all afternoon. So, you know. A big mix of magic.
Thanks for the texts and messages. I can't read em anymore but I will after. Tonight was overwhelming but I ate dinner surrounded by family wearing We Are Plucky tee shirts and my 2 boys who are the best kids I know. I'm gonna be good.
I only had one meaningful conversation during Reddit's April Fools' Day project this year. They set you up with a stranger and you can type anything. I asked what he was most afraid of. He said change.
Then he asked me back.
I thought for a while and I finally said beige life, living 5/10. One week later I found out about the brain tumor.
Today I came home from ICU. I was so tired but my mom opened so many packages and read me cards. There was one package from the author Charles Baxter. He wrote my favorite book called the feast of love. He sent me a copy of this book and inscribed it to me. My friend Jess Farris apparently wrote him to ask.
I don't know what to say. What are you supposed to with that? The cards and the gifts and the books from people I have met across my whole life, arriving in the bigness of it is so overwhelming I genuinely cannot comprehend.
A while back when I lived in New York and worked in a building with a big elevator, I set a goal in my mind. My goal was to be able to get trapped in the elevator with any human and have it be OK. Even a friend who hurt me really badly in high school or even a terrorist. I really love each human. Everyone is doing their best, everyone is trying to survive. When you look in one person's eyes you see that they too are handling a lot.
Here is the very nice doctor who did the artery work yesterday. He has a four-month-old baby girl and today he came and showed us some images from my brain in ICU. He did a good job and made us feel so confident about the work for Monday. Thank you, Dr. Rob.
Many times a day I say the words "please keep me here." I literally have no idea what my work is now but I know I have so much to do. Thank you everyone for every single thing you have done. You are responsible for the energy bring into a room and you have completely and utterly blown our hearts and minds over the past two weeks. Thank you thank you thank you.<3
Today I'll go under for embolization. My mom and Chris and with me. Send them good vibes and support and kind doctors.
I'm flying so low under the radar of the world right now that I mostly think about laying in warm mud. No joke. I let everyone else handle things. I just close my eyes and stay warm and wait for them to fix me.
I made videos for my sons this morning. I don't plan to need them but just in case something happens, I wanted them to know some things.
Sometimes it feels like my funeral. But I am hoping to do a magic trick and have the positive words come without the tragedy. If you are lucky enough to be alive to hear the way you touch people, this is massively what I'm living through right now. And I know that you can't read this blog all the time! It's too sad or too dark or just not what you want to be swimming in. I really get that. So just come by when you can.
They called today to tell me about surgery time on Monday. I check in at 10:50 AM and the surgery will start at 12:50. I asked if I should bring snacks for the doctors. Because that will be a long day! But the lady laughed on the phone and said no. My mom said they're not allowed to eat snacks while they're doing surgery and I guess that makes sense because I don't want Doritos in my gray matter.
My mom arrived yesterday and it is such strength to have her here. She brought me so many word puzzles and Sudoku books so I can be strong and retrain. I'm too wiped to even go pick one up right now but I will get there soon.
I started rereading Harry Potter earlier this week and it's the slowest I've ever read anything. I can't concentrate for very long but I do love thinking about owls and the first day of a new school and getting a new adventure pushed in front of you. My cats are spending a lot of time with me lately. My sister calls Ollie my neurodoula and who knows what he knows but it's good to have someone with you when you can't do anything but lay quietly.
This morning Noah woke up and came in our room and got in bed with us which is different than normal. We talked a little about feeling sick and he told me it's important to have your family help when you need to rest. He's so gentle with me lately and he doesn't know what's going on but you can tell he senses something.
Tomorrow starts some appointments at the hospital and I know that we're coming to the bridge. Today we are having a sofa bed delivered for all of the guests who will come to help; we also rented a second car for a month so that we don't have to share one car with appointments and kids and visitors and all of the needs we'll have. We are OK. I am good. Really, I love life and even though the meds make me so tired I still think so much is beautiful and I still love humans.
Thank you for the thoughts and the kindnesses. I'm sending you a big fat hug from here.
I used to have about 30 energy pellets to spend a day- between business, kids, family, life. These days I feel (no joke) around 4.
But I will have you know that I spend one of them each day on how to give back. Sometimes I google a map of the continental US and dream about a 2017 tour to give a talk. How to fire a brain tumor or the career path you must amble it down to stay alive. How to use the generosity of our community to help YOU after my family got all we needed.
I just want you to know.
My mom arrives in a few hours. She's going to take care of me and my boys and Chris. She's going to give me a daily shot in the belly after I get home from surgery because she's a nurse.
Here are details:
- Thursday I do labs and have an appt to check in
- Friday they will do embolization, which means putting something in my groin artery to feed into tumor and start cutting off blood supply. Time to starve it so I don't lose too much blood during surgery. (EW GROIN ARTERY BLOOD BLAGGGGH.)
- I'll likely be at UCSF overnight for that
- Sunday I go in for a longer MRI so they can be up to date with everything
- Monday is surgery, around 10AM. Booked for 7 hours. They say it often goes longer. (I wonder where I'll be? I never even had epidurals with the babies. I think about this sometimes, where I'll be on drugs. I avoid thinking about what's literally happening during the surgery. It's not my dreamiest curiosity to imagine.)
- Then maybe home Thursday or Friday, but lots depends on what they find.
I got my boys each a dou dou when they were born. It's the French version of a lovey. I never had one growing up but loved it when I lived in France so it became part of our tradition. Right after I was diagnosed I got me one too. It's a pink bunny. Noah named her Radish :)
I hung this above my bed last night. Because hell yeah, Roosevelt. Hell yeah.
I spend most the day laying in bed. It's kind of like a charging station. I'll never get close to 100% but I'm close to 22 or 23% for a few minutes. Then I can send a text or drink some water or eat something.
I mentally write thank you notes. I hear noises from the other room of Chris cleaning. Sometimes I hear my phone but lately I have to ignore it because I can't imagine picking it up .Today the doctors office called and gave me details for lots of appointments this week. It made me scared. I feel like I am descending into the scariest part and I do believe I'll come out the other side but I know this is a big deal.
When the only thing I can do is lay here I wonder what I can learn, maybe what it's like to let go of what's on my plate, maybe how to feel really still and quiet. Im not Normally good at that.