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.