7.04.2016

To Aaron, on his first birthday

Aaraboo, 

There is a part of me that wants to write a very long letter to you, describing your every move and personality traits and preferences and more. But I'm going to keep it simple. Because even the simple messages that I put in your baby book, the tiny memories that I save and paste somewhere special, they all join the same intention I have, which is not to be the stenographer of the memories of your childhood, but rather the curator of it.

You are so rarely stopped, Aaron. You run into a wall. You fall down in the slippery bathtub. You are hit in the head, you trip over your own little feet. You land on your diapered-butt hundreds of times a day as you've learned to walk.

But you always keep going.

I'm not saying there aren't tears (although it is pretty rare). But you just pick yourself up, you never stop going.

And the image of this, the fact that I know someone who is this determined... well it has inspired me through many a moment, tiny one.

What would Aaron do? Or what would Aaron say about this? The answer is always move forward and shove what is unwanted out of the way

Thanks for being unapologetically yourself this past year, Boodle. I have needed to see it - we all have.

Happy, happy birthday.

Love,
Mama




6.28.2016

Days

Last night Noah asked why we didn't have a calendar to look at the days so I grabbed one for $1. Turns out he was only really thinking about Christmas and counting the days til Santa comes. 

So this is basically a 6 month advent calendar. Ha!

PS He really wants to be Santa for Halloween. 


6.20.2016

Meta stuff

What's interesting about writing about this whole experience is the order of what I feel I can write about. By far, I've written the most about surgery and my hospital stay so far. 

I haven't touched pre-surgery life, notably diagnosis and the two weeks between that MRI and surgery. I can barely look at my notes on this stuff without crying. That was the scariest part, I guess. When we were horrified by what was happening and before we had the tumor out. 

I've written a little about recovery, but it's all things that happened at least a week post-op. Notes about those first days home also make me cry.

In my pre-tumor life I used to listen to emo music while I wrote. No joke, I mostly now listen to Jay-Z. 

Probably Jay-Z helps me steel parts of myself to digest and write this story without falling apart in the coffee shop. (This is very meta to close read myself like I'm my own coaching client! ;))

6.17.2016

Writing

Hey YOU try writing about your little brother holding your hand in the hospital without crying at the coffee shop! Just you try. 

I'm so grateful to have this time to write. That's all I wanted to say today. xo

6.16.2016

Birds and writing

I wrote a piece on Identity recently and published it on Medium yesterday. Here it is if you'd like to check it out: https://medium.com/@jenniferdary/identity-358b3e5b4e0d?source=linkShare-2423b982f9c8-1466115101

And though it's been a LONG time coming, here's the latest coloring piece:


I threw in some red and gray birds for Muhlenberg love. This one took forever because it's huge and what I can do has changed so much. For example, I'm on the fifth Harry Potter because I've been reading those before bed lately rather than coloring. While the kids are at daycare I write and don't lug the coloring stuff to the coffee shop, though having finished this beast of a bird picture, I'm excited to choose the next project. Artist and friend Lisa Congdon mailed me a few of her coloring books a few weeks back and I'm dying to dip into those!

6.14.2016

The itch you can't scratch

It was time to update goals tonight:



It's super-interesting to see these goals evolve from functionally-basic things like driving or bathing the kids to writing thank-you notes or having a networking coffee with a work contact. I miss my clients terribly but am patting myself on the back for giving myself some space before jumping back in. I go to coffee shops and write while the kids are at daycare. I've also started going to a yoga class those days too. 

The swelling in my left temple and cheek is almost gone and I have a few patches of numbness but many of the nerves have reconnected and come back online, so to speak. The other night I had SUCH a bad itch in the middle of my head but could not access the part that was itchy with my scratching. Is it just numb there and I can't feel the scratching relief? Is it somehow underneath where the stitches were? Let's not think too much about it.

I've been avoiding Facebook and the news since last week when political posts were making me want to pop people in the chops. I put FB and the NYTimes apps in a folder on my phone called TIME OUT. I'm sure they'll come out of Time Out soon but even a short break is really helpful and has kept things calmer in my brain.

6.11.2016

Paying it forward

It's reading other people's posts about stunning diagnoses that busts my heart these days. On Monday afternoon I read the Facebook post of a client whose wife is about to go through an intense year of healing and treatment. Within four seconds I was crying, sobbing even. 

And man, was I mad at the universe. 

I found/find it hard to be angry at the universe for my own situation - maybe because I'm so focused on getting through that I don't want to stop and emote yet. But I was so angry for this woman. "Are you fucking kidding me?" I kept thinking and saying through my tears.

I decided pretty quickly that our paper cranes, sent by many friends and people I don't even know, had found their next home. So this morning we took them down and packed them in a big box and soon they'll be on their way to help their next patient. 


I know what this woman is going through. The early days of diagnosis are foreign and foggy, sleepless and confusing. At least, they were for me. So I empathize with at least some of what she's going through.

But as we put the box together this morning and I attempted to write a card too, I also empathized with everyone who sent me a card or crane or gift or message. Man, what do you say to someone who has been dealt the most unfair thing you can imagine? How does it not ring hollow and like you're pissing in the wind?

Well, having sat on both sides of this ugly situation lately, I'll say that it's the thought that counts, as with everything else in life. Your smooshed paper crane, your cheesy get well card, the flowers or book or soft socks that you send... it's the energy behind the gift that shows up. I would see a return address and instantly feel a warmth, a tiny burst of happiness. I am still avoiding email much of the time but I do see names or subject lines sometimes and it's the same thing.

It's your intention that matters. I hope these cranes bring our best support and warmth to a woman who now needs it more than we do. 

6.06.2016

A good day.

Things I did today on my first alone day:
  • watched the rest of Girls, season 5
  • 3 loads of laundry (ugh. Why? GUILT-INDUCED. Must give less fucks.)
  • cried
  • (sadly) discovered someone who really needs my magical paper cranes more than I do now, so I'm going to send the little guys to her to help with her own health battles
  • wrote for a while at a coffee shop
  • had coffee with a friend
  • got the mail

Here's a picture of me and one side of my scar in the coffee shop. My hair is growing and I think of the scar as a bike path going through a thick forest. I was feeling sad about my short hair and not feeling like myself until I googled pictures of women with buzz cuts and then I saw Natalie Portman from a while back. No joke, it normalized the look for me a little. 

But mascara helps me feel more normal too. For real.



6.05.2016

Tomorrow

Pre-parenthood, weekends were the relaxing time of the week. At this stage of parenting (brain tumor aside), they are the most exhausting. Two straight days with two needy-age kids and two wiped parents by the end. Sunday nights are promising because Mondays are daycare days and frankly, the whole team needs a break.

Chris goes back to work tomorrow (3 days a week for a couple weeks, then full time). I'll do morning prep with the kids and then drive them to school... then I'll be alone for 8 hours until I pick them up. 

I need this. Badly.

Do you know how weird it is for a VERY extroverted person to say this? I have been treading water for 6 weeks, handling bits and pieces of alone time here and there. But I haven't had HOURS alone. I teared up just thinking about it earlier and I really couldn't tell you how it's going to go. Will I finally just cry all day? Watch Season 5 of Girls, one after the next? Bake a cake? Nap til 3? Drive to Sacramento and back just for the hell of it?

We need routines in our lives; often they comfort us and allow us more energy because we aren't trying to reinvent the schedule wheel all the time. But if you have been in that hamster wheel of a routine lately (for parenting small people or otherwise), take a personal day one of these days and spend it ALONE and FREE to do whatever the hell you want.

I can't wait.

6.03.2016

The Podcast and the Driver

First, here's the driver:


Surprise! It's me. I'll be dropping the kids off and picking them up at daycare starting next week so we practiced this morning. No accidents, took back roads. :)

Second, friend and industry buddy Carl Smith interviewed me for the podcast he runs with the Bureau of Digital Affairs last week. It released today and you can listen here:

6.01.2016

Tethers

My mom asked yesterday how the appointment went and if I felt better after asking McDermott all my questions. I told her that I'm glad everything went well but I feel in a freefall to not have another follow-up for a year. (Really, next step is a MRI in a year.) She told me that oncology patients often feel a sense of loss at the end of chemo treatments too; while they are obviously thrilled to be done with their treatment, the doctors and nurses have become a version of their family.

The longest time I've ever spent with McDermott was 4+ hours in an operating room while I was unconscious and yet I feel closer with him and his NP Jennifer than most of the humans I know. (I asked him what color the tumor was and he said "pink cauliflower." C.R.A.Y.).

My mom left this morning to go back to NY, Chris starts ramping back to work next week, today starts a new month (hello, June), our Meal Train ends tonight. It feels like this chapter is authentically closing. 

And I am glad - I've been staring at a May calendar for 31 days, willing time to move faster so I could sleep and feel better and chew easier and the whole lot. 

But I built tethers to get me through May, some of which I can move forward with but some that are expiring or just not useful anymore. So I also feel like it's the first day of school, on the doorstep of a new grade and new experiences. 

I'm able to read more now. In fact I finished the first Harry Potter, got through the second and am into the third book. Doesn't it piss you off that Voldemort shows up in each book and when HP defeats him, no one says "HEY LET'S FINISH HIM OFF." The dude is weak but he still exists

Yesterday McDermott said that 50% of meningiomas recur within 25 years. This broke my heart. Chris later explained that because mine was Simpson grade 1, it's much less likely for me, but still. I thought a lot about damn Voldemort and meningiomas yesterday and that I hate the idea of going through this again. 

And yet. I also thought about HP and how he kicks it in third year, hanging with friends and learning lots and having a fun time on a broomstick while knowing Voldie is still out there. 

You can't let fear of what MIGHT happen again bust your ability to do great things.  So I'll cut some tethers loose and move into June looking for new ones. 


5.31.2016

The Surgeon and The Goals

We saw my surgeon today for a check-up. I'll write more about it soon but I'm pretty wiped tonight. I wanted to say two things:

1. When McDermott walked into the office he said "do you remember what you said to me when we were about to wheel you into the OR?"

I did not.

"You said, "McDermott, let's get this fucking thing out of my head!"

We all laughed. Then he repeated the story as he was leaving after the appointment. "Well, I was on a mission!" I told him and he laughed again. 

To be memorable with a surgeon who sees a ton of patients is sweet. To be memorable for tenacity and some cursing in front of your mother and husband, sweeter still.

2. Speaking of determination, here are updated goals:




5.29.2016

Temporalis

Don't break character
You've got a lot of heart
Is this real or just a dream?
Rise up like the sun
Labor till the work is done

My sweet friend Tim made me a Spotify mix for recovery and the first song is one I'd never heard before, Be Still by The Killers. When I listened to it 3 weeks ago I bawled in the shower and decided I wasn't ready for the rest of the mix. Those lyrics above are from the song and they hit really close to home but are also strengthening. 

During the surgery they detached (and then reattached) my temporalis muscle on the left side of my face. Here are actions that I've learned through real-life experience that the temporalis muscle is involved with:
- yawning
- chewing
- whistling
- licking ice cream (spoon is ok)
- eating tiny things like quinoa
- talking
- opening wide enough to bite a hot dog in a bun

Sometimes if I overuse this muscle I am totally unable to do those things. One night around 3am I couldn't yawn. I kept halving it, unable to complete the yawn because it hurt to stretch. I took IBProfen and 40 minutes later I finally yawned. 

I've had a good stretch of days but last night I suddenly fell apart with my family at my sister's house where we had a little BBQ. It was because I couldn't bite a damn hot dog but (obviously) it was more than that.

It's so hard to pace. It was much easier to lay in bed when my eye was swollen shut and my head bled on the pillow. But as you start feeling better, you kinda forget to rest or to say no or ask for help. Not only was I overwhelmed by being out of the house with the boys and A missing a nap and the rest of it, I was just pissed that this is not over yet. I have been patient and loyal to the recovery cause but it is not my personality to passively wait things out. 

Alas. This is where we are. Ironically the labor The Killers talk about in the song is just the opposite for me- NOT laboring, NOT actively doing things is my labor. The temporalis muscle needs "many weeks" to get back to normal. So I'll watch how much I talk. And chew steak. And yawn.

But I can write. Ain't nothing wrong with my fingers.



5.23.2016

Bears. And tortoises.

I read a book with Noah the other night about a mother and baby bear who are getting ready for hibernation during the winter. Isn't it the most BIZARRE thing to imagine? Going into a cave nest thing for MONTHS without eating or anything but sleeping? (Ok, I think they eat a tiny bit, but still.)

Then I read something about tortoises and had some similar disbelief. Isn't it nuts that a tortoise has his HOUSE attached to himself? He's like an animal RV. The dude can stop at any moment and say "I'm out, heading home" and he's there. 

I don't know why these thoughts came to mind today. Maybe because they're both about sorts of homes and I've spent a lot of time in our house lately. I wouldn't say hibernation is over for me just yet but I'm feeling the first stirrings of feeling ready for the outside world. And as I start exploring that by walking to a coffee shop or sitting on a bench, I also want to retreat into my shell sometimes too. I have a giant scar that goes from one ear to the other. I don't want to scare people or gross them out or to be noticeable at all, but it's alright. It's a transition. 

5.21.2016

Blizzard life

Physical recovery from brain surgery is a lot like watching a blizzard. There's a lot of waiting. If you live where it snows, you know what I mean. When they predict something like 20 inches, you sit back, make some cocoa and maybe read for a few hours under a blanket while listening to the quiet that only exists when snow falls. Because who is going to keep shoveling during a blizzard? Maybe you scrape around every few hours but you're waiting for the worst to be over before you can get to cleaning up.

When you are recovering from brain surgery, a different sort of blizzard happens. I have a box full of cards that I haven't been able to touch. I have gifts and mix CDs and flowers all around the house. I have dreams that showed up along the way, dreams for Plucky and for my family and for me. But I can't deal with any of it right now. I record the gifts on a list, I stack new cards in the box, I write myself emails about the future that I want to manifest. And I exist here, moment by moment, pushing the mental recovery off until I feel like the blizzard is over.

Chris and I have talked about how we can't answer "how are you doing?" I mean, you do. Or you try. But it's impossible to say. Instead we ask each other for a list of feelings you're feeling. That's more clunky but more true. Tired, sad, hopeful, patient, scared, bored of these days. Stuff like that. My NP told me that people my age are hit by the full force of what happened to them about 6 months later. You get back to physical norms 2-3 months in, but mentally it takes time.



Here's my latest picture from 5/19. The black triangle is because there's always something black. Nothing is full of rainbows. But figuring out how to defeat the black? That's what I am always hungry to do. Xo

5.20.2016

A list of things I could do to pay back Jess

In case you have not been following along on FB, my college friend Jess has been getting various heroes of mine to send me SIGNED BOOKS. (Aka Charles Baxter, Dave Eggers, Brene Brown, Krista Tipett). What she must have said and included in her letters to these very famous people, we do not know. (Crack? Snickers? Boxes of Girl Scout Samoas by the dozen?!)

Also her mom just sent me a box of 24 cranes that her Elementary School class made me to get better soon. (WHO ARE THESE KIND PEOPLE.)

So sometimes to make myself laugh I draft a list of payback items. Here are a few:
1. 4 Golden Retriever puppies with red bows (5 seems like too many for a dog walker, so I stopped at 4.)
2. Dozens of boxes of Girl Scout Samoas 
3. A hot air balloon that folds up nicely so she can commute to her job in L.A. without having a bad commute
4. A website from one of my clients that just says JESS [LAST NAME] IS A GREAT FRIEND
5. An oculus rift
6. A museum
7. Meal train for a year 
8. Governor's Island in NYC (they barely do anything with it anyway and I have always wanted to make it a college campus OR buy it and get all my friends to move there and have a weird town of Muhlenberg and Middlebury and Arc90 alumni, among others)
9. A Christmas tree in May, complete with reindeer
10. A baby
11. Buy a box of Lucky Charms, pick all the marshmallows out and put them in a Tupperware and send her the Tupperware 

That's all I got for now. I'll let you know what we come up with xo

5.19.2016

When the going gets tough...

... the tough write new goals:



Sometimes I think about how this might be a very depressing blog to read. I'm sorry about it for a few minutes but then I just think, well, maybe I'm the Dave Bazan of blogs. You don't listen to Bazan (who sings about losing his religion) when you're really in the mood for Katy Perry. So pace yourself; if the things you encounter here on this blog are really heavy for you, skip it for a while. For whatever reason, it really helps me to write here almost daily and often I write what I wouldn't post on FB (aka the darker parts of this journey). Anyway, I just felt like I wanted to give you, the reader, that permission slip.

My rest times aren't as long anymore. Lately I can give myself 20 minutes to close my eyes and I have more energy again. I don't set an alarm or anything, I try to guess when 20 minutes have passed and then open my eyes. It's a very energizing little trick and I wonder if this isn't something I could keep doing after we're back to "normal life." Take 20 minutes and rest your eyes, slow your day down and just rest. Try it if you're having a hard hour or day. It might help!

5.18.2016

To be.

I hit a big wall yesterday afternoon. It's a long story but the end is that I sobbed for a good half hour. I said "I can't do this" over and over a million times and I doubted everyone who has called me brave because the truth is maybe I've just been in naive denial til now. I have no hobbies that are the same, I do not recognize myself in a mirror, I do not feel like the same person. 

Here's a Central Park bench I colored because I needed something real and tangible to swap in: 


Questions I want to ask my surgeon McDermott (whom we affectionately call McDizzle) on June 3 at my check-up:
1. What color was the tumor?
2. Where is the tumor now?
3. What shape did they cut in my skull? A square, I think, but I'm not sure.
4. Will the bumps on my scar fade and smooth out? 
5. Has anyone ever had 2 meningiomas in their life?
6. Do titanium screws affect you at all? 

If I decide to be cremated when I die in 200 years, will the titanium screws be among the ashes? I won't ask him that, too morbid, but I do wonder.

If anyone decides to do Hamlet with my scull one day, it's going to look very modern.

5.16.2016

Walking the line

I got a pedicure today with my friend Melissa and it was awesome to talk about our kids and her and not just how I'm doing. For obvious reasons I feel like I'm the focal point much of the time lately and these bright stage lights are too much some days. It was great to feel NORMAL.

I got a book from Brene Brown in the mail today, which broke and exploded my heart simultaneously. SHE IS SO COOL. So overwhelming! My friend Jess had written to tell her about my journey and she sent a signed book. It was MAGIC.

Last night Chris and I got ice cream and drove around for a while. We talked about life and our future and we pointed out pretty houses in Berkeley. It was NORMAL.

The amount of coincidences showing up right now are MAGIC. Too many to list out.

I find myself unable to read the news at all. It is TOO NORMAL. 

Normal and magic. I'm in the middle now. I'm honestly afraid of when everything gets back to normal because the magic moments have been strengthening, have helped me so much. What happens when normal takes over? What about this new self? How does she fit in with normal? That's what I feel nervous about sometimes.

New pix:


5.15.2016

Complexes

For an hour last night I felt guilt. Guilt for altering the course for so many. Chris, those on his team at Reddit, Noah, Aaron, my in-laws, my family, my clients. April and May have been so different than we all thought they'd be. 

But guilt is a waste of energy (particularly if you didn't give yourself the brain tumor that caused this mess). So I moved on. Be like water, my friend Alex from High School told me once a long time ago. I decided to be like water and just move with the cards we've been dealt.

Then Aaron woke up at 3:51 crying. He has been sleeping terribly since this all began. We made him 2 bottles and he gulped them down, then I rocked him and told him "everything's ok" over and over for a few minutes. He went back down but I lay awake til 6, thinking about my poor sweet guy and how hard it is to be 10 months old and go through this mom withdrawal. 

My Nana's mom died when she was 9 months old; she was raised by her siblings. Aaron won't have that same life, for that I'm grateful, but I do believe this will mark him somehow. Same with Noah. Kids are resilient for sure but this has definitely affected my boys and often I feel helpless to know how to navigate supporting them through it.

Here's Aaron yesterday evening. We finished dinner early and needed to kill 30 minutes before bath so I walked him around the block and showed him flowers. It helped us both, I think.



5.14.2016

Signs were there

I just opened Evernote to make a note of something and found this list I had been keeping. Man. We just didn't see it.

Title: Headaches 2016
3/28- woke up with headache
at 6am (didn't wake up bc of it)... Took 2 ibuprofen and helped

3/28- 5:55pm headache, stressful past hour of picking kids up and figuring out dinner. Finally took 2 ibuprofen at 8.

3/29- woke up w headache around 7. Stiff neck from Pilates?

3/29- headache at 5:45pm, took 2IBP. Noah sick, not sure what's up w me. A bit of teeth pain maybe (back of mouth?)

3/30- 7pm headache, only thing of note is A was being difficult getting PJs on. Took 2 IBP bc the whole family but me has a bug.

3/31- bad headache all morning, finally took 2IBP around 1pm

4/1- morning pain in teeth, headache related. 2IBP at 11:45am

4/1- bad headache at night, ended up taking 2IBP at 3am. Blood felt heavy in left ear, couldn't remember month and other simple info. Felt pulse in left ear very strongly.

4/2- 5am, noon and 6pm- 2 IBP. Was so nauseous and sick today with what Chris had.

Blurred vision noticed again- esp when I'm reading while laying down

4/3- blurred vision means words moving a bit on the page, I can't read quickly, I blink more often when reading 

5.12.2016

No Is For Wimps

One day when I was a sophomore in college, my friends Russ and Matt came by my dorm room. I was an editor on the weekly paper back then, a goal I was proud of achieving after running my high school newspaper. Russ and Matt had printed out an interview with Dave Eggers and were in my room to make a pitch.

Quit the weekly paper, they said. We want to start an online paper at Muhlenberg. We want you to help run it. Read the addendum of this interview with Eggers and see what inspires us (http://www.armchairnews.com/freelance/eggers.html).

I did not do things like quit established resume-builders and go rogue. I was a good kid who got good grades and made my parents proud.

But for some reason it really got me. Go read that interview, or at least the addendum starting with "Did I wonder if people would think we were selling out, that we were not fulfilling the mission they had assumed we had committed ourselves to?" (Just search the page for it and read from there.)

So I quit the weekly paper and joined what we called The Advocate. And for the rest of my college time, we ran a ragtag bunch of secret underground cool people who wanted to write about things they cared about, not the newest swipe system in the cafeteria. It changed my life. Our mascot was a combination of a puma and a mule (Muhlenberg mules), we printed tee-shirts and rode on Homecoming floats and we had a blast.

My entry into tech was similar. I saw my friend Andy at a Muhlenberg happy hour and told him my job was killing my brain. He said "you're smart, you should apply to work where I work, a company called Arc90," so I wrote a cover letter for a job that didn't exist and said I wanted to make the company into a community. The partners interviewed me and said we'll be honest, we like you but we don't know what you'd do here. I said me neither but someone invited me in for an interview.

I was hired to write copy for a product website, the product that my future husband had just invented in his apartment. And I was there for a good chunk of years. In my later years I felt echoes of The Advocate, helping some dudes run something that wasn't really my specialty, but feeling like the glue that held certain aspects together.

For a few years after college I ran an online lit mag called No Is For Wimps because I missed The Advocate. I named it NIFW after a line in that Eggers piece and it was a difficult but satisfying as hell little project to run on the side. 

No Is For Wimps, the words and the creative history of it, is something I think about now. I wanted to make it a brick and mortar one day, a bookstore/coffee shop/event space where people could do brave things together. Now I see that Plucky, my latest foray into brave personal start-ups, is the current incarnation of NIFW.

I can't see exactly where I'm headed, but guys? I am so grateful to be alive and keep iterating.

Now go read that Eggers piece and try not to be inspired as hell.

5.11.2016

Progress

Every day feels 1000% more doable. Really. I can do more than the day before, I can last longer for activities, I can read more sentences in a row. Last night I slept for 7 hours! And only one bad dream about forgetting Noah in a NYC restaurant. 

I scrolled a teensy bit through FB this morning and saw everyone living life. It made me really happy.

Here are my two latest pictures:




Holy cow those little yellow circles in the blue leaf. They were so hard! I have some blurry vision in my left eye from the surgery (it will get better, just so swollen now) and those circles were like hard SAT questions! 

My friend Bobby recommended listening to classical music and Moonlight Sonata came to mind. I played the violin from 4th-12th grade. For some reason in High School orchestra class I had a couple friends teach me how to play a good chunk of the beginning of Moonlight Sonata (I didn't play piano at all but we did this during the first few minutes of class while we ate snack). I don't know if I'd remember it now if I had a piano here but it is such a pretty song. I listened to it yesterday while I worked on the dragonfly pic.

People talk to me more now on the street. Possibly because of this giant scar? They smile and say hi, they say good morning. Yesterday during my walk I asked a man if I could pet his lab and he said yes. It was the first time I pet a dog since all this happened. She was really nice and her name was April. I walked 3 loops of our parking lot and played music on my phone while I did it (Light Me Up by Bronze Radio Return). It played out loud while I walked (not ready for headphones yet, too much happening in the head area). And it made me laugh because maybe all those guys who annoyingly blast their music on the NYC subway for the whole car to hear? Well maybe they too are recovering from meningiomas.

DIDN'T THINK OF THAT, DIDJA?! ;)


5.10.2016

Night

Turned off the light about 10, woke at 3 from a terrible dream. They were wheeling me into the OR but no one talked to me, they looked at me like I was a specimen. They put tweezers in the bridge of my nose to tune me to a Nashville station and it hurt a lot. I saw that they were new doctors and I was really scared that they hadn't done the procedure before. They were hurting me. 

I woke up scared and anxious. I woke Chris up after a while and he rubbed my back but I let him fall back asleep because one of us needs to be rested for the kids. I lay awake til a little after 5, just scared and anxious. I heard my in-laws get Aaron up when he squawked and came to the living room around 5:30. I cried with them and told them I was scared and they comforted me. Then I ate some cereal and hugged Aaron and saw Noah get up at 6. I headed back to bed at 6:30.

Then I had another terrible dream. Chris and I were both having brain surgery and they put the oxygen on me to get me to go under but I wasn't going. I asked every doctor who came in the room CANYOUHELPMEGETTOSLEEP and they said they might need to do surgery while I'm awake and I was so scared. They started on Chris since he had gone under and I saw bags of blood. 

Then I woke up and realized I had been dreaming and that now it was almost 9 and that the day was here and I'm safe and the surgery is over and that I'm ok.

The meds I was on are still in my system but hopefully gone soon so I can sleep again. This PTSD shit is intense.

5.09.2016

Next time

Outside of family I've only seen 5 or 6 other people I know since the surgery. Do you know what feels overwhelming? Knowing that the next time I see EVERY SINGLE PERSON I KNOW it's going to be an emotional train wreck. What's the small talk sitch? 

Hey how are you since you had that brain tumor?

Cool, cool. All good. My life just totally is different and I'm different and HUGE THINGS BLAH. 

Maybe instead of talking I can just bring some Ritz crackers and we can cheers and sit next to each other while we munch them quietly.

5.08.2016

Up and down

This is the pace of the day: do something, then rest. It's no joke. I get wiped from the smallest things. When the boys are home I save all my energy for them. Playing with Aaron for a little bit (and by this I mean handing him toys while sitting quietly) requires an hour of eyes closed in bed to recoop. 

Yesterday I suddenly wanted to watch a Seinfeld. What an experience to rewatch with my brain in this state. It was funnier than ever before but also more obvious that they were acting. It was easier to follow the storyline because I'd seen the episode many times before (Big Salad) but still a little confusing because of how many narratives were converging. I had to rest for hours after Seinfeld. We never watched the last episode of House of Cards before surgery; I cannot imagine how long it will take me to handle it. A year? 

My mom left this morning and new reinforcements arrive later today, my in-laws. Manny was in my head a long time and that was horrible but the war feels like it's post-surgery. We are so tired. We spend it all and then recharge, then do it again. This endless rhythm is so hard. 

Here is what my room looks like from my bed:

5.07.2016

Sending signals

Some days I post something on FB but I can't look at it again til the next morning. I feel shy and there's so much support its overwhelming. But in the morning when I wake up I can read the comments and it gets me excited to get out of bed.

Other times I post things here on my blog, more thoughts and feelings from inside. Twitter only a couple times (I feel ever shyer there). 

I send tiny texts sometimes, little xos when I think of someone and feel like I have the energy to text.

And I email myself lots of times each day with the subject line Book to remember things that happen. Because I am going to write about this. 

It feels like a mixed media art project (is that the words for that art with many textures?). Choosing the right channel for the right message.

5.06.2016

Picture 2

This one took a few days. It was really tiring to choose colors for all those little holes! I wanted it to look like stained glass. And a big strong superbird.

I listened to a song called Thank You by Bombadil for a long time while I finished it today. https://m.youtube.com/watch?v=Pj0sXKPgbQo

Xo


5.05.2016

Sentences

50 times an hour I think Do The Thing You Think You Cannot Do. It's like my heartbeat. When I get overwhelmed I rest and then feel that sentence. 

I had a sad dream about weaning Aaron so quickly the other night. I woke up and was so sad and worried about him. I really haven't worried much during this whole time. But then a new sentence came to my head: don't worry, just go forth. I want to spend every energy I have improving, not worrying.

So if I feel scared or worried or weak I use those two sentences to push me through. They help and are so strong.

5.04.2016

Birds

Reading and writing take a LOT out of my brain. Yesterday I asked Chris to find a coloring book a friend from Muhlenberg sent before the surgery. So I spent a few hours quietly making a picture. Here it is:


Sometimes music is good but often it's too overwhelming. Two days ago I heard some birds singing outside and wanted to hear them better so I found this: 

https://m.youtube.com/watch?v=s9dbAfjlrks

It's the prettiest background noise to rest my eyes to or even hear while I color. Maybe you'll like it too. Xo

5.02.2016

Xo

Never been good at baby steps. Crashed hard this morning because I did too much. I can't wait to live life again but I have to go really slow.

Sometimes I send xo as a text or message. It feels like sending a little air bubble from here, I'm here, I'm thinking of you. That's what it means, ok?

Xo

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.

--------
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



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. 

------

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.

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. 

---------

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.


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