4.25.2016

Aw hey.

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.

Xox



4.23.2016

Saturday

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.

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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. 

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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.

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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.


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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



4.22.2016

Friday

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.

Xo

4.20.2016

Wednesday

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. 

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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. 

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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. 

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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.

4.19.2016

Tuesday

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. 

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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.
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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 :)

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I hung this above my bed last night. Because hell yeah, Roosevelt. Hell yeah.


4.18.2016

Monday

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.


4.16.2016

Surgery scheduled


My sister picked the boys up at daycare yesterday while we were at the neurosurgeon and she transcribed Noah's note to us. Made us laugh. No I did not get shots! 

We audio taped the convo with Dr. McDermott so we could review it after (half that convo is a foreign language). When you are the person whose brain is being discussed, you fade out when they talk about bone. And skin. And peeling your damn face off. So let's not discuss that, shall we?

He said my tumor is pretty. He said my gray matter is so squished on the other side because of this tumor, which is a bit in the bone. So Chris thinks I'm going to be a super-genius when they get it outta there - so much luxurious spacing! 

I'll go in late next week for embolization, which is when they put something in an artery in my groin that feeds a coil up to my brain. I'll likely be in the hospital overnight and then they'll leave it in me til the surgery on Monday the 25th. This means that they'll be depriving the tumor of blood so the surgery is better and easier and I don't lose as much blood.

Then I'll have the surgery on Monday and they said it might be 6 hours. My mom and Chris will be there. The docs are going to shave my head (or at least the front). I'm not sure what to say about that. I'm embarrassed because I have always had a couple little bumps (skin tags?) on my head but Chris has already bought me 2 hats. So this is a new area for me to get comfortable with. 

I told the doctor and his PA that I have a lot of work to do so let's keep me alive. They were both really supportive and kind and UCSF was beautiful and the ideal environment. They gave me sleeping pills so I FINALLY slept last night a little. It made me feel so happy to wake up this morning and hug the boys and feel a tiny bit normal. 

The outpouring on Facebook and here, the origami cranes arriving every day, it's all so much. We are clearly learning how to accept help, which is not what we're good at. Bear with us. We'll feel embarrassed and shy but we are so appreciative. 

I asked Dr. McDermott if we could do a selfie and he said yes. So here is the kindest Canadian ever:


We talked about going to see clients in Toronto together and doing lunch & learns. Also I had a call this week with a funny woman who has had a brain tumor herself and I pitched a conference where only people with brain tumors can be speakers. I KNOW, I KNOW. I'm not organizing shit right now. But this is who I am, looking for places to make differences, pushing for helpers and being kind. Every kindness matters and it makes me feel so authentic and real to appreciate others. 

So I don't know what it is yet but I anticipate a Really Big Dream showing up after all this is done. Time to change the world. I'm not ready yet but I will be one day soon.

Xox Thank you, humans. You matter.

4.15.2016

Things. In no order.

Things That Are Currently Tough:
1. Weaning Aaron (he is not happy and I'm uncomfortable and I'm not so thrilled either.)
2. I'm SO tired but can't fall asleep all day. Part of this is engorgement but another part is being on steroids that keeps me awake. And another part is having my life kinda flash before my eyes whenever I lay down and think. All the people I've been hearing from, all the life I've lived in 35 years. The fact that I'm about to get brain surgery. The feeling that grows in my gut more each day, suggesting that when this is all done I need to dream BIGGER. It's hard to explain.
3. Keeping everyone on their toes. As soon as we have the surgery booked my mom will come out and help. Then we'll have more family following. We're just all waiting to see this neurosurgeon tomorrow to get clarity on schedule. (Is it awesome or weird if I bring him brownies? Hm. I really want a picture with him. I want him to know how glad I am that he exists on the planet.)

Truths:
1. I had two children with no drugs and I have never been good at drugs at all (even pot). So... I'm kinda worried about being SO FAR GONE while they operate on my brain. Eek. 
2. Chris and I had a big convo tonight about the truth behind my wishes. I am very committed to living. So, that's the plan.
3. The thing I keep visualizing is this: losing weight from my head and then going to Hawaii. LET'S DO IT, MOM! When we are through this months from now we are going over there because why not? Life is short. I want to see beauty and I want my mom there too. She has always wanted to go. 

Answers to Popular Questions:
1. My neurologist thinks I've had this tumor at least 5 years. Maybe my whole life. Likely hormones fed it so the past few years of pregnancies were contributions. 
2. It is very likely benign. 
3. My worst fear is that it's cancer, despite that last fact. Pleasepleasepleaseplease benign.
4. Recovery depends on every person and every tumor. I hope they keep me in the hospital for a while because arriving back home, strung out on drugs for weeks with 2 tiny kids around is... ack. 
5. Odds are good they get it out and we're done. Maybe radiation if they can't get it all.
6. My friend Jon named the tumor Manny. Ha! Manny is getting evicted. GTFO, you squatter.

Questions I Asked Myself Yesterday:
1. What do I want to learn from this?
2. What does my gut tell me right now?

My Best Buddy Gave Me These The Day I Found Out:

I've been wearing them ever since. GOOD LUCK, sweet brain. Good luck. 

4.14.2016

Stuck.

I don't want to be here. But I don't want to go forward to brain surgery either. And backwards isn't helpful. None of it feels appealing unless we're talking a year from now.

Tonight we went out to dinner without kids and the meds all hit me and we got scared because I was acting not like myself and I had a good headache. Now when I get a headache I worry that my brain is about to blow up. We drove to my sister's and she took my vitals. Then I took more meds and talked and ate half a cupcake. It helped.

Isn't it weird how hard one step at a time is? Sometimes time and the concept behind it is the hardest thing to push through. When I can, I think about that Vietnam guy who has a concept named after the way he paced his prison time. I can't remember the name now but it is empowering. Other times I can't empower through the moment. I try to breathe some air and drink water and just... exist. I hold my own hands and I remember who I am and I try hard to get through some time. It helps.

But to be honest? This fucking sucks. 

4.12.2016

A Story B4 Bed

Noah prefers when I'm the one reading books before bed but in a few weeks I'll be out for a while. I'll be in the hospital for about a week when we do the surgery and then I really am not sure what state I'm in once I come home. (Can you read stories in the evening or do the STAPLES IN YOUR HEAD prevent you? Ugh.)



So I found an app called A Story B4 Bed that lets you tape yourself reading a book on the iPad. I recorded a few tonight and will keep going tomorrow. 

I haven't let myself connect too much with the idea that surgery will be dangerous and something could go wrong. I have to wean Aaron this week because of the anti-seizure meds they put me on and the steroids I will be on in a few days. I want to make my guys feel connected to their mom even if I'm in the hospital or really drugged for a while, so I'll get as many books recorded and lots of snuggles to remember.

I feel optimistic overall but every 10 minutes I remember the key words: BRAIN TUMOR. I worry I may be seeming into myself or over dramatic on Facebook but guess what- THERE'S A BRAIN TUMOR. No one gives a shit how I'm talking. Time to be kind with myself.

4.11.2016

Tired but ready

Sometimes I think about who might benefit from this one day and I often think another person who ends up with this. So hello, dear one, if you found this via Google then I'm going to talk about what this is like so you don't feel alone.

I was so tired today. The seizure medicine I just started taking may be causing this as a side affect; I napped for 3 hours and 1 hour later today and that's NOT really normal when you have two small kids. We dropped the boys off at a friends' house today to play for a bit, another friend brought us meals and my sister & brother-in-law made us dinner. Between these gifts and the infinity kind and amazing messages on the Facebook announcement today, I feel very supported. 

The odds are this tumor is benign. We are meeting with second opinion doctors this week and next and then will likely move into surgery quickly. Pros? THE TUMOR IS COMING OUT. Cons? STAPLES IN MY HEAD. Gah. And a long-ass recovery time.

I have it in me. I have it in me. I have it in me. I have two boys to raise. I have a business to run. I have a husband to get hella old with. I'm not done with any of this yet. Xo



4.09.2016

So.

I have a brain tumor.

There's no other way to start this. I've written and rewritten this a hundred times but here's where we are. Yesterday morning I had a MRI to make sure that my last 6 months have been full of tension headaches and nothing weird. My sister waited in the waiting room while I went into the tube where they took pictures of my brain. Then ten minutes after I got home, the neurologist called and said they found something.

I called Chris and told him to jump in an Uber home. I called my sister and asked the same thing. Soon they were here in the living room and we were on the phone with the neurosurgeon. Then we went to his office. It was crazy news! How insane! And that's how I felt until I saw this image when we walked into his office and I saw the motherfucking large tumor behind my left eye. And then I felt very scared.



There is no way to write this post well.

I am not interested in:
1. Dying. (Please. I have a whole lot of things to do on the planet for humans.)
2. Losing abilities to speak or walk or parent or function.
3. Losing the ability to speak French (DO YOU KNOW HOW MANY DOLLARS I SPENT learning French and living there? I adore this language and the people there. Let's get this tumor out of the left temporale lobe because that's where it affects language.)

I am also not interested in someone cutting open my skull, existing in ICU for a while, closing down Plucky for months while I recover, missing planning and hosting my baby's 1st birthday party... but you have to choose your battles.

So. Yesterday was the worst day of my life. And I'm not looking forward to a lot of the next few months, but here we are. The outlook looks good, but I have a meningioma in my left temporale lobe and it's soon time for brain surgery. We've got some things to talk about.

xo