That First Mile

I have an embarrassing story. In fact, I may have mentioned it before, but I'm going to tell it again.

I just finished jogging around Green Lake, and although when I started it was misting, while I was halfway around the lake it started dumping rain. Rain drops were cascading down my face, down my neck, I was soaking wet. When I first moved to Seattle I was worried about the weather, I was afraid I would hate the rain. Now that I've lived here for three months, I can safely say that the rain is soothing. I love it. Even when I run, the drops have a way of cleansing you from the outside in.

Rain Outside Our Living Room Window

As I ran, and the rain continued to pour, I thought about how different my life has become. I flashed back to 2006 when I was stifled in a poorly mated marriage. I stopped running for a period of time, a few years, and I didn't focus much on the food I was eating - I ate all kinds of crap, anything that sounded delicious. That year, I topped off at a yearly doctor's exam at 183 lbs. I am 5'6 and 3/4" (I always have to add that almost inch). That doctor's appointment was a changing moment for me. I decided that I was being stupid, that just because my husband wasn't in love with me, didn't mean I couldn't love myself. So, I started jogging. At first, I could only go about a block. My lungs would burn, and I'd be wheezing up a storm. I hated the fact that when I ran I could feel all of the extra fat on my body bounce, and I was frustrated that I didn't fit in any comfortable workout clothes. I was disgusted with myself. I was in a love/hate relationship with my own body, and struggling with my self worth.

Once I was able to jog one mile, I decided to set a goal. A big goal. I signed up for a half marathon. I didn't care how long it took me to do finish, my only stipulation was that I was not going to walk - no matter what. It took about half a year to train for the 13.1 miles, but I did it. During the race, in the final couple of miles, as I trudged through, I was neck-in-neck with two speed walkers, it was hilarious!

Finishing that race was one of the most challenging and surprising things I've ever accomplished. It showed me that I'm capable if I put my mind to it. It was not easy, that's for sure. Some days I didn't want to run, but I didn't want to give up. By the finish of the race, after all the months of training, I was down to around 150 lbs. I was healthier, and I promised myself that I would never give up on myself like that again.

Crazy memory, huh. It nice to have ups and downs in life. The downs are truly what makes you strive to improve and appreciate things.

The Question

I just found this photo. It was taken in a hotel, a day before my first meeting with the Chief neurosurgeon at the UW in Seattle. At this point of my life all I knew was that I had a brain tumor the size of a tennis ball. I was scared, unsure of my future, and pretty shell shocked about the turn of events. I remember Danny comforting me; we were both scared together.

I guess, right now in my life I'm still scared about the changes to come. I'm grateful that I have the support of Danny, my parents, my brother and sister-in-law, and my friends but even though, it's still scary. I've never done well with unanswered questions, in fact if I was a superhero I'd be The Question (according to Danny).

I'm so glad I've been documenting this experience. Not just for the future, but because it reminds me of the past. Life can change so quickly.

Evolution

Yesterday my hairdresser Jesse, who's been in my life since I was a wee fourteen years old, provided a safe haven in his Seattle townhouse for me to shed my follicles in privacy.

I'm forever grateful for the compassion of those around me. I can't even begin to express my gratitude.

Craniotomy, Not That Bad

I'm still sitting here playing the waiting game, which has its ups and downs. On the bright side, I get to spend the weekend with family and friends relaxing, and contemplating what a killer life I have (no pun intended). On the down side I just want them to saw open my head and dig this puppy out so that I can start recuperating.

With all the extra time on my hands I decided to start a fun new game...

Craniotomy, Not That Bad

#1. I have a very close friend whose son was born with Congenital Scoliosis. He's now almost four years old. His case is so severe that in the next 6 months to a year he will begin a series of surgeries on his spine that will occur every 6 months until he's around 16 years old. In the initial surgery he will have a rod placed at his spine, and then with every reoccurring surgery they will slightly extend the length of the rod until he's done growing. This poor little blond fella that looks like he fell off the Jerry Maquire movie case has no idea what's in store for him. His process is going to take over a decade just of surgery, let alone all of the other complications. Therefore, Craniotomy, not that bad.

#2. Another friend, Heather, has a daughter (Hayden) who survived a dresser and television falling on her skull. She was taken to the neurosurgery dept at Harborview Medical Center where a team of doctors had to brace her head, and do surgery by braille to locate a pea sized place in the dead center of Hayden's brain to relieve pressure so that she didn't die. Craniotomy, not that bad,

#3. My uncle Michael (not really an uncle, but one of my dad's best friends) shattered his femur in over 50 places back in the 70's in a mid-west snowmobiling accident. To repair his leg they placed him in traction (hooked up to a bunch of pulleys and wires, with screws placed in the bones once the pieces had been reattached) immobilized him in a hospital bed, and had his leg raised for three months while the bones fused. Wanting to be closer to his wife, they placed him in a full body cast and transferred him via hearse for 28 hours to get back to Seattle. Once in Seattle they immobilized him for another full month. Bedridden for four months. Craniotomy, not that bad.

#4. Another of my friends, Kristen, is trying to support her mother as one of her mother's best friends deals with the tragic news of a malignant brain tumor (almost certainly a death sentence, she was told). The woman is beginning to undergo chemotherapy and radiation. They don't know if she'll live. Craniotomy, not that bad.


Thanks to my friends and family for sharing their stories. There are so many situations that are much scarier, more painful, less hopeful, and more physically and emotionally taxing. We're a huge team of people on this Earth and we get through each challenge together.

1st Neurosurgen Apt (Wenatchee)

Wow. So much has happened in less than 72 hours that I don't even know where to begin.

First of all, I can not believe how loved I am - I have the best life and the most amazing group of family and friends, thanks to everyone that has been bombarding me with love and support through emails, texts, facebook posts, word of mouth, etc. I feel really powerful right now, like I can conquer the world!

Today was great starting out - I've been using my trademark "black humor" which has been really helpful, but then sometime around mid-day I had a reality check and burst into tears that this is going to be such a burden on everyone around me. I'm aware that this is going to be a lot of work for all of us, and I'm really grateful for the all of the love.

So - 2nd Jess Update
I met with the Wenatchee Neurosurgeon yesterday afternoon. He gave me the diagnosis of a Parietal Meningeal Lateral Posterior tumor (don't remember if that's the correct order of the words because I don't have my notes with me). When I looked at the screens from my MRI and Angiogram it was pretty crazy. The tumor is huge. I guess that's why they want to operate immediately. It's pushing the left side of my brain over the midline to the right side of my brain and causing outward symptoms.

They're worried at this point because the tumor is pushing down on my brain onto some veins and an artery and they're worried that the pressure could cause a rupture, seizures, a stroke, etc.

The Wenatchee neurosurgeon wanted me in for surgery at 8:00 am this morning, but I told him that I wanted a second opinion. He is one of two neurosurgeons in Wenatchee and they cover everything below and above to both borders of the state. They're the only neurosurgeons between Spokane and Seattle.

I didn't want to be insulting - but this IS my brain we're talking about here, and after he gave me an overview of the craniotomy, using terminology like, "You will take a nap, then I will scoop it out like ice cream." After that, I really needed another neurosurgeon (from Harborview) to review my file. Right now I'm in a waiting game. All of my film, scans and my chart are waiting at Harborview for review by Dr. Sekhar the head of the neurosurgery department (and widely regarded as one of the top neurosurgeons in the world). They will review everything tomorrow (Friday) and I should hear back on Monday regarding surgery.

I want the best of the best for my surgery, but if I have it in Seattle it's not easy to get home. After surgery I can't go over the passes for a month, can't drive for a month, can't lift anything for a month, oh ya - and I'll be bald. Too bad the bad hair will last for a little longer than 6 weeks. I'm not allowed to put my head lower than my heart right now, but this morning when I came up with my new name GI Jess, I was dying to do a battle roll off my bed and book it to the bathroom just for kicks. Oh well. In time. 

Either way, since I have to get the tumor removed, I'll be getting the craniotomy, but I want to feel really confident and comfortable during the process. Better to make sure that we've got a great team of doctors, because I'm set on living through this!

Anyway, my diagnosis:
*I have what is believed to be a benign tumor (they won't know until they remove it and biopsy it)
*Due to its size/characteristics it's believed to have a high probability of recurrence over the span of my lifetime in different areas of my brain (MRI's for life baby!)

I feel pretty good about what's going on. I feel insanely lucky that the tumor is on the outer area of my brain, and it's believed that I won't lose much if any of my brain function (some would argue that what's left after my college days is questionable anyway, so I'd like to keep what I've got!).

Urgent Jess Update

The email I sent to friends and family after the results of my scan:

Friends & Family,

Just wanted to send a quick note to let you know that I've had some extremely unexpected news. After an insanely intense debilitating headache that occurred last Friday while snowshoeing with Danny (and a couple of re-occurring headaches on Saturday and Sunday), I scheduled an appointment to meet with my doctor yesterday morning (Monday).

I told her that I had such a bad headache that I couldn't walk or see for about 90 seconds, and that the left side of my head, and lower back of my head, felt like they had a lot of pressure, and continued to have a pretty bad aching sensation.

I pressured her to sneak me in for an MRI scan immediately, but there were some hoops regarding my insurance so we planned a CT for today.

This morning I went in for my CT scan, at which time they said that I would instead be receiving an MRI (at which point I thought, "ooooh, UPGRADE!!"). Once in the room for the MRI they told me that I would not only be having an MRI but also an injection to see my brain even better (at which point I thought, "Cool! Double upgrade!!!").

After the procedure the radiologist looked at me funny and asked when my followup exam was (and I told her Friday), she told me that they would have my results shortly. I only got halfway home on my drive before I had a call from my doctor who told me that she had been on the horn with the neurosurgeon Dr Higgens and that I have a massive brain tumor and an AVM. I asked her if I was going to die, and her response, "We hope not."

She wanted me to turn around and head back to the hospital because they were holding a position at the CT dept for an Angiogram as soon as I could get in. Of course, I then called Danny sobbing and told him I couldn't talk but that I had a brain tumor. Then, I had my parents come get me from my car - I couldn't drive because I was sobbing and shaking so badly.

I've since done the angiogram and I just took my first pill to take care of the brain swelling. 

I have an apt with the neurosurgeon tomorrow where he will go over my diagnosis and my options. It all depends on the AVM and the Tumor (I'm capitalizing because I fell like it deserves that kind of punctuation). The two issues are unrelated, but make it difficult for surgery. I have no idea what type of tumor it is. We have no idea what I'm actually dealing with.

Anyway, at this point all I know is that I have a large Tumor in my lateral parietal region and an AVM.

I will be in and out of the hospital in the following days, and it looks like the first brain surgery is scheduled for Thursday morning at 8:00 am.

In the meantime, I love you all - all of my friends and family, and if you pray or send positive energy, please do what you do and think of me because I'll feel all of your positive thoughts. I'm not sure how things will continue from here, and I probably won't be on the phone except for doctors or things of that nature - I've already been on the phone today with three different doctors, two radiologists, and multiple nurses regarding this issue. They are awesome, awesome people, and they're really moving this right along.

Sorry if this email is ridiculously long - but you all know that I'm absurdly long winded.

Please don't be offended if I don't get to your call/text/email - it's definitely not personal. All of my love to everyone - I have been so insanely fortunate in my life - and I can't wait to conquer this - and for the record, I am cashing in regarding this email...any grammatical error of any sort or any particular aspect of my writing that doesn't sound eloquent and mind blowingly witty, is because I have a brain tumor.

ALL MY LOVE
XOXOXO
Jess