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