Mike, Annie, my parents, and myself all converged on San Francisco this weekend in honor of Jackie! For the fourth year in a row, we were a part of her team walking to raise money for the National Brain Tumor Society.

Turk the Tumor is Toast

Family and friends of Jackie! came in from all over. The kids had a blast playing together.

Annie showed Jake how to pick and throw grass like an expert

After snacks and beverages it was time to walk. Everyone donned their costumes – toast-shaped hats for the adults, superhero capes for the kids.

Dana, Jake, Annie, Mike

Jackie! and her parents are creative and positive all the time – as if these hats and capes didn’t make that obvious.

It was a gorgeous day in San Francisco, unseasonably perfect. A wonderful day to walk, celebrate, and support Jackie! and everyone else affected by brain tumors.

Jackie!’s team came in first place for fundraising, with a total of almost $70k. She was called up in front of the entire walk to give an acceptance speech.

She rocked her toast hat and rocked her speech, too.

We spent the rest of the weekend with Jackie!. I’m soaking up my time with her, trying not to annoy her too much (sorry Jackie!, I just really like hanging out with you). I know she hates words like “strong” and “inspirational” so I won’t use those. Instead I’ll just brag that she’s raised so much money for brain tumor research that the National Brain Tumor Society named a Chair of Research in her honor: the Jacqueline Oswold Chair in Systems Biology. She is amazing.

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I had a good trip to San Francisco. Jackie has an apartment in a great part of the city…this is the view from her corner:

I looked at it every two hours, when I had to move my car. I hate your stupid parking, San Francisco.

We we very chill the majority of the time. Jackie tried to play host and suggested we go see Alcatraz, which has become a running joke between us. Over the past few years, whenever I’ve gone to SF Jackie has always said something like, “I’m not very fun right now,” and I always reply, “That’s okay, I didn’t come to see Alcatraz.” I’m not there to see the sights. Besides, I saw The Rock, Alcatraz is just a big jail with Sean Connery. Booooring…but sexshy.

We did go out in her neighborhood a bit, mostly to get food and snacks, although we also saw The Artist and really liked it. We felt like seeing the Academy Award winner for best picture helped balance all the…well, I don’t want to say horrible, so let’s just say non award-winning movies we watched on TV. There was also a lot of facebooking old friends, flipping through magazines, and I read The Hunger Games…which in hindsight probably wasn’t the wisest book to read what with all of the um, bad stuff that happens in the books, but oh well.

There was also a lot of talking…. about our lives… the unexpected twists… how we were feeling… with plenty of room for trivial topics, the kind of fun things we’ve always talked about.

Sitting beside her, laughing and watching TV, I felt transported back to many lazy afternoons we’d simply hung out and enjoyed each others’ company… in our sorority house, in our apartment in Hermosa Beach… and though things have changed in our lives so much since we first met as carefree college girls, we still don’t need anything to have a great time together. We just need each other.

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So my drive to San Francisco. That is something I never want to do again. Except that I have to do it again in a few days. I am so tempted to abandon my car here and fly back to LA.

The drive started out great. A lot of you suggested I download an audio book, so I did (I went with Mindy Kaling’s Is Everyone Hanging Out Without Me, super funny). I had my No Kid Music playlist prepped, and I even attached a remote to my camera and set it on a tripod on the front seat. I got a new tank of gas and a jumbo bag of Cinnamon Bears. I was ready.

The first hour of the drive was great. Mindy was telling me hilarious stories, and I was making good time. I was anxious to get to a certain part of the 101 freeway, where the road turns away from the ocean. I really wanted to stop there and take pictures.

But when I got there, my driving directions app beeped that there was rain ahead. For some reason, I thought the best idea would be to skip the photo shoot and instead drive as fast as I could TOWARD the rain. Like, somehow by driving fast I would avoid it? Except, like I said, I was driving TOWARD the rain, so driving quickly wasn’t going to help me miss the rain – it was going to get me wet sooner. Obviously, this is extremely flawed logic.

As I drove, I was had my eyes open for the dark rain clouds. I could see them, but I could also see blue sky, so I was surprised when it was suddenly raining.

And then, it was suddenly really raining. I told Mindy to shut up, and I gripped the steering wheel. It was the kind of rain that hits so fast that the roads don’t have time to absorb it. Cars around me started hydroplaning and skidding off the road. Then the hard rain stopped, and this weird foggy mist suddenly surrounded me, but since the sun was still somehow shining, the foggy mist was bright white. I couldn’t see more than maybe ten feet in front of the car. It was at this point I decided driving and screaming were not fun. I pulled over onto the shoulder and watched a few more cars skid out. I drove on the shoulder until I reached an exit, and I sat in the parking lot of a McDonald’s until the skies cleared. The most amazing thing about this is that I did not buy an Apple Pie.

The rest of my drive was pretty, even with the occasional downpour:

the open road

moo

where wine is born

I stopped once to refill my tank, and I bought three coffee drinks with varying levels of caffeine. Right now, more than seven hours after my last sip, I am still jittery. But at least I didn’t fall asleep on the road, right? I can sleep tomorrow…or Friday.

I finally arrived in San Francisco eight hours after I left home. After driving around the neighborhood for 25 minutes, I found parking and was reunited with Jackie!. We promptly got pizzas and gossiped and watched hilarious TV. The crazy rain-soaked drive was forgotten.

I take it back – I would drive back to San Francisco in a second.

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Later this morning I am driving up the California coast to San Francisco to spend some time with Jackie!. I am going again in two weeks for an epic girls’ weekend, but timing and circumstance worked together to allow me this extra bit of time with her. I am desperately looking forward to holding that girl in a tight hug.

Mike has made this drive countless times without me, and countless times with me, but I have never made it alone. In fact, I’ve never made such a long drive alone ever. It’s a very easy drive (get on the 101 freeway, drive 375 miles, say hi to San Francisco) so I’m not worried about the technical aspects of it. It’s an eight-hour drive, and the only time I normally get eight hours alone is when I’m sleeping. And I haven’t slept for eight hours straight in…well, probably not in years.

The thing that worries me the most about being alone for eight hours is where my mind might go. I have only recently gotten better at being alone in the car, but that’s never more than a forty-five minute drive, tops. With the heavier nature of this trip and the upcoming milestones in my life, I’m worried I’ll get bogged down by the morose and just cry behind the wheel for the entire length of the coast.

When I told Mike my worries, he told me to look at it from a different angle. Normally when we make this drive we have a child in the car, so we are always very focused on getting from point A to point B as quickly as possible. Also, we have to play annoying amounts of kid music. This time I can stop when I want to (I might want ice cream! Or a crab cake! Or maybe I can even pee in private!), or take pictures at scenic overlooks. I can listen to whatever I want to on the radio. It’s been a while since I’ve listened to my music on a car stereo. I might even download an audio book, although I have no idea what I would get.

Basically, I am going to focus on the unique opportunities this trip will afford me – most importantly, time with one of my favorite people in the whole world. I can’t wait until this evening, when we’re camped out on the couch eating junk and watching junk, talking and laughing and doing our best to pretend that we are still the carefree girls we once were only four short years ago.

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I am really struggling. My mind is 100% elsewhere. I am stressed. My hair is falling out. My stomach hurts all the time. I play with my daughter and I’m thankful she doesn’t know what the dark circles under my eyes mean. When I can, I lay under blankets and I stare at the clock, watching the numbers change, counting to sixty, watching the numbers change.

I carry on my day-to-day and feel like it’s all so stupid. Write and edit and rewrite and delete. Know that someone will disagree, know that someone will jump all over me. I can’t find the energy to care and I don’t know if that’s good or bad. Write, edit, delete. I tell myself things. I lie to myself. What do you do when the story isn’t yours, but it’s all you can think about? You put on the face and you write around it. And you hate yourself for acting like everything’s OK, but you don’t know what else to do.

For the last two years and ten-plus months, I’ve counted away from something. I’ve tried so intensely to stop calculating days and start cataloguing memories. I succeed most days. Other days, weeks like now, I have numbers and predictions and dates swirling in my head and I am completely failing at keeping my head above it all. I don’t want to count toward something. Not this.

I wrote this, and six days later I found out I was going to experience the other side and gah, life is so unfair, can someone else learn that lesson now? We’ve all had enough.

Experience has taught me that I’m in a low point and that things will get better. Although, things aren’t going to get “better,” they’re going to get worse and I know I need to get myself up before the waves pull me completely under and out to sea. But maybe soon I will be able to deal with everything a little better. I’ll put on my fake smile. Eventually it won’t always be fake, and I’ll find a way to put one foot in front of the other, and to carry the ones that need some extra help.

And I will lean on you, and hopefully you will let me.

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Jackie! is in town visiting, so Annie is in high gear. She’s been following Jackie! around everywhere, dancing, counting her toes (she likes nail polish), and generally trying to impress Jackie. Yesterday morning she stood outside Jackie!’s bedroom door and said over and over, “Hi? Hi?” Annie is gonna be saaaaaad when “Nackie” leaves.

Mike got a haircut yesterday and it’s…well, it’s a little TOO close in some parts. Like above his ear.

He didn’t realize it until after he got home after his cut. Jackie! and I saw the bald spot immediately and sent him to the bathroom to investigate. He was back there a while, so we assumed he was using his electric clippers to even things out. He rejoined us eventually and said, “how does it look now?” Jackie! and I looked…and then I said, “wait…is that…mascara?” Yeah, it was. He’d taken my mascara and put it over his bald spot. Sigh.

We still have no furniture in our front room. The longer it stands empty, the more paralyzed with indecision I am. We don’t have the funds to fill it anytime soon, but I just keep looking at design and decorating websites and I’m so indecisive! Some people would look at an empty room and get excited at the possibilities. I look and put a ton of pressure on myself to do it right blah blah blah.

Until then, Mike and Annie will continue to use the front room as their soccer pitch.

if you can’t see the video above, click here.

Her cheer at the end cracks me up!

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Heather has been in transit today – after much hand wringing and crying by Heather I encouraged her to fulfill her speaking commitment at Mom 2.0 in New Orleans – but I wanted to give an update on Jackie! Her surgery on Wednesday went as doctors hoped, and she is now in recovery. Thanks to everyone for sending Jackie! good vibes and well wishes, and I’m sure Heather will update during the day with a bit more information.

*********
Hi everyone, Heather here now. It’s been a rough recovery for Jackie this time, and she is in ICU but stable. Please continue to keep her in your thoughts, it means so much to all of us.

*********

Jackie! has not only been discharged from the hospital, but she is home – as in, back in San Francisco! She will be able to recover much better there, although she’ll be in Los Angeles for numerous follow-up appointments.

© COPYRIGHT HEATHER SPOHR 2012 All rights reserved. This content may not be reproduced or transmitted in any form, by any means, without the prior written permission of the author.

A lot of you have asked me for updates on my friend Jackie! because I haven’t written about her since her surgery in January. I have a hard time writing about her. First, because I get really emotional; second (and most importantly), it’s not my place to tell certain parts of her story.

I went up to visit her in San Francisco the weekend before April 7th. I needed to see her. We spent the weekend together, had a few good meals and a walk on the beach, and did a lot of lounging and talking and just being together. It almost sounds like we had a romantic weekend! And we did share a bed, hee. But it was perfect, watching movies, enjoying each other’s company and easy silences.

After Jackie!’s surgery in January, the doctors discovered her brain tumor had progressed to Stage IV (I’m really simplifying all of this). She entered a drug trial in San Francisco and we all hoped it would do its job and prolong her life.

A couple days after I returned to LA, we found out that Jackie!’s tumor was back. And, it is bigger than it was before her last craniotomy. She decided to enroll in a different drug trial that will require another brain surgery that is currently scheduled at 12:45 PDT today. I say scheduled, because as she was waiting for her pre-surgery MRI, she had a seizure. No one knows how this will impact her surgery schedule, but we’re all hoping it will still go off as planned.

In typical Jackie! fashion, she jokingly updated her facebook status that she had her seizure to “keep things interesting.” I’m not going to talk about her strength or positivity because she’ll read this in a few days and punch me in the face for writing it. I know she says she’s putting on a brave face. But you have to have some inner strength for that, and Jackie! has it.

I am really a nervous wreck about her surgery, even though I have this warped feeling like I shouldn’t be so amped up about it. But I am, I am consumed with thoughts of her and have been for a week now. I just cannot bear thinking of her recovering from another painful surgery, starting another drug trial, dealing with side effects. I just want her to catch a break. I want her parents and siblings and her approximately 18 million nieces and nephews to all breathe a little easier.

Every time I ask you all to keep Jackie! in your thoughts, hopes, and prayers, you all come through for me in a big way. And I’m going to ask again. For Jackie!, the one that has supported me since the day my OB told me all those years ago that my pregnancy with Maddie wouldn’t last. Please lift her in your hearts and minds, pray if that’s what you do, send positive energy, everything you can, to Jackie! and her family today.

Thank you, from the bottom of my heart.

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Whenever I don’t want to let my mind wander off on dark paths, I keep myself busy. With Jackie!’s surgery yesterday, I knew I would have to have a day jammed with activities. I planned on really throwing myself into getting things ready for Annabel’s birthday party, but then I woke up with an insane-looking eye.

Backing up a bit, the day after my dental work, I woke up with a somewhat-swollen eyelid. It was the same side I’d had my work on and my cheek was a bit swollen as well, so I figured it was all related. I took a picture for posterity:

focus on the inner beauty in this picture

The next day it was mostly gone, so I figured I was right. Then this last weekend, I came down with another really bad cold. Sore throat, cough, the works. We all have it. Anyway, when I woke up yesterday, my eye looked like this:

I would call that DECIDEDLY WORSE. So off to Dr. Looove I went.

During my exam, she felt my eylid, pressed on it, and then flipped it inside out so she could look at its eyelid innards. Gag. She diagnosed it as a large stye. Basically, my eyelid grew a tumor out of solidarity to Jackie!. I think that shows true friendship, and also proves that I love Jackie! too much. First plan of attack – antibiotics, with hot compresses and washing my eye with Annie’s baby shampoo to make sure it’s clean. If the first plan doesn’t help by the end of the week, I need to have it CUT OUT.

That’s a scalpel near my eyeball for those of you who don’t watch medical dramas. Nothing compared to getting a mass cut out of your brain, but definitely high on the Disgusting Chart.

After I left Dr. Looove’s office, I went to the party store, where all the little kids looked at me like I was Igor or something (what hump?) while I walked the aisles. Plus Annie yelled “DADA! GO!” the entire time, so my self esteem was suuuuuper high.

When I could no longer take showing my hideousness to the outside world, I went home and started obsessively checking my phone and email for updates on Jackie!. Luckily, her sister Jenni did an awesome job of keeping us all up to date.

Jackie!’s four hour surgery went well – the doctors got what they saw on the MRI, which is good news. No word yet on if what was removed is scar tissue or new tumor growth. We have to wait for the biopsy results, and that can sometimes take a few days. Jackie! herself came out of the surgery very well. She’s obviously got a killer headache, but she sang our school’s fight song and I’m sure she was pleased to find out that the surgeon didn’t shave her whole head – just the portion along where the incision was made. Knowing Jackie!, she will have some excellent headbands covering up that strip in no time.

Thank you to EVERYONE for your messages and well-wishes. I know Jackie! and her family will be reading them all in the days to come.

And don’t you worry your pretty tiger heads, I’ll keep you posted on my eye. I think the stye needs a name.

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The day after Maddie died, I asked my friend Jackie! to come to me. She put everything on hold and drove six hours to be with me. When she arrived at my house, I was laying in bed, having just taken a sleeping pill. She got into bed with me, and laid with me while I slept. She (along with some of my other closest friends) took care of all the details that I couldn’t. She bought several dresses and brought them to my house so I wouldn’t have to go shopping for a funeral dress. She even bought me spanx. She means everything to me.

Jackie!, for those of you who don’t know, has a very mean and aggressive brain tumor. She inspires me every day (and will hate me for saying that). Instead of wallowing like so many would, she has raised tens of thousands of dollars for brain tumor research. She has headed up the top fund-raising team in San Francisco for the last two years running. She has bravely told her story in front of thousands. She is awesome.

The last couple months have been rough on Jackie!. She’s been having seizures, and has been feeling generally crappy. But it was still an unexpected blow when we found out that Jackie!’s last two brain scans showed suspicious growth. It could be scar tissue from her first surgery, but based on the growth between scans, the doctors suspect it isn’t.

So, today in San Francisco at 3:30 pm, her amazing neurosurgeon is cutting into her skull to see what’s growing on her brain. Her second brain surgery. I am hoping with every fiber of my being that it IS just a strange scar growth, and that once it’s removed, her seizures will stop and she’ll be able to recover quickly and focus on raising more money and growing hair back on her noggin.

Before Jackie!’s first brain surgery, Maddie let Jackie! borrow her lucky shirt. Jackie! had it with her in the hospital:

On Maddie’s first birthday, Jackie! returned the shirt and gave Maddie something else:

Annie and I are going to hold, touch, and wear it all day, sending all our brave vibes to Jackie!.

I hope you all will do the same. Please.

© COPYRIGHT HEATHER SPOHR 2012 All rights reserved. This content may not be reproduced or transmitted in any form, by any means, without the prior written permission of the author.