Friday, April 29, 2011

Happy Birthday Mom

One year ago, your birthday was hectic. You were in a waiting room in the ICU while I had my second brain surgery. It was a true emergency and I know you were afraid. What a way to spend your birthday! The timing was horrible. I'm sorry that you have to share your birthday with such a scary anniversary that holds an insane amount of emotion. I hope that in time the brain tumor aspect will fall away to a dull memory and you can just have a happy day.

I talk to you every day, and I know that this tumor is incredibly stressful. You're such a mom, always taking my burdens on your shoulders. Thank you for supporting me, loving me, and protecting me.

One of the reasons why I'm able to conquer this diagnosis is because of you. You give me strength. I appreciate you. You're a mom, a best friend, and an amazing role model. Thank you for working so hard to provide an amazing life. You're generous, kind, incredibly funny, beautiful, and every day I think about how lucky I am to have you.

Happy birthday! I'll see you soon with your favorite, an angel food cake with lemon filling. I can't promise that it'll be any good, but knowing you - even if I mess up the recipe you'll smile, and tell me it's the most delicious thing you've ever eaten.

I love you :)

Thursday, April 28, 2011

Malt Balls & Red Wine

Some days I just want to be bad. I want to forget about the possibility of my brain tumor growing. I want to live like there's nothing out of the ordinary regarding my health.

I want to drink red wine and eat malt balls. And sometimes, I do it. Sometimes I want to forget my winning ticket in the brain tumor lottery. But, just as some of my friends who are mothers (or fathers) of little children can never forget that they're responsible for all of the daily things in their child's life, I can never forget that I'm responsible for the life of my tumor. It's in everything I do, every food choice, every exercise trying not to push my body so hard that I have a seizure.

I'm always assessing my choices, and when I make bad choices (like eating some of the potato wedges at girls night last night & drinking wine), I get disappointed in myself. I wish that all I had to worry about, when eating, was if it would cause me to get fat. Now, I don't care about getting fat, I just don't want to feed the tumor. It has become a little gremlin in my brain that taunts me.

I often feel overwhelmingly responsible. If I drink wine, it feeds the tumor, if I eat desert, it feeds the tumor. If I eat any carbs like rice or beans, or pasta, or potatoes, the tumor grows. If I don't burn all of my calories each day, the excess feeds the tumor.

Danny recently got a job which is bittersweet. It's fantastic because it's a great job, but I'm heartsick to leave the amazing girls whom I cherish so much. Soon, he'll be moving to Seattle to start training, and we will be doing long distance for several months. Even in our professional lives this tumor dictates things. I can't miss a single moment of health care coverage, so I have to stay behind and work. As much as I wish I could change it, our lives are completely dictated by this tumor.

I was talking to my mom about the whole tumor debacle this morning, and she said, "Sometimes I get angry. I wish you didn't have a tumor and that you didn't have to go through this." I told her that I'm not angry, I get disappointed by the fact that I have to make so many changes, changes that I don't necessarily want. But, I'm not angry because the end of my story hasn't been written. If there's anything I've learned from this tumor, it's that you can never predict the things in your life. I have no idea where the twists and turns in my life will take me. I'm certainly surprised by where I'm at today. I guess the only guarantee is that life keeps moving forward, so, as my dad likes to say, "Keep your knees bent!"

Wednesday, April 27, 2011

1 Year Surgery Anniversary

One year ago today, I was undergoing brain surgery at this time. My skull was wide open, and the surgeons were delicately removing as much brain tumor as possible. I was peacefully sedated, having already participated in the awake portion of the surgery.

Wow. Even as I wrote that, it shocked me. For being only 30 years old, I've participated in some crazy stuff. I'm lucky that I've had the opportunity to be a part of this wild brain tumor ride. I'm grateful for the experiences. I've come out stronger, and with a depth that I definitely did not have prior. I'm still pretty self absorbed about my health and diagnosis, but I feel like I have to live that way to make sure that I'm paying attention and combating this cancer.

This diagnosis, the surgeries, and the long journey of recovery, have forever changed me. Thank you to Danny, my family, my friends, the friends of friends, the anonymous supporters, thank you to everyone for holding my hand through this past year. There is absolutely no way I could have done this alone. Thank you!

Thursday, April 21, 2011

Speaking Of Scars...

After doing the last post I realized it had been a while since I'd posted pictures of my scar. Below are a few photos. My scar is now my little secret. Strangers would never know what I'm going through just by looking at me.

I feel like I'm finally integrated into society. That probably sounds weird. It's hard to explain....I guess I felt like I wasn't moving forward. I felt ugly, that's for sure, and I didn't like the fact that I couldn't choose my hair, it chose me or maybe it's that the tumor dictated it. I now feel like I have options. Options are such an important thing in life. Anyway, about the scar, thank you to my parents for providing such thick hair genes, the fluffy hair is the perfect cover up for my little secret!

New Hair Cut

Here are photos of my new hair cut. It's the second hair cut I've had since the brain surgeries. The boys (my hair colorist & cutter) call it a 1920's bob. At first I hated it, but now I'm starting to love it! I miss my long hair, but at least now I have a style. You can't even see the scar! I think the hair is a little sassy :)

I'm liking my sassy short new 'do but I'm still dreaming of long beautiful, blond hair. It's a great motivator to eat healthy and exercise. The longer I go without radiation, the sooner I'm able to get back to my long blond Baylayaged roots! I'm going to print the following photo and put it on my fridge for inspiration. I do best with goals.

It probably sounds like a stupid, self absorbed, goal but at this point I don't care that much. Whatever gives inspiration to try harder, eat better, exercise more, and sleep, is all that matters. I'm a girl who loves hair. We all have our weaknesses.

Tuesday, April 19, 2011

MRI Appointment

Sorry it's been so long for a post. The MRI itself went well. The results were only "ok" but more on that later. On a side note: I've discovered a higher pain threshold for the IV process and that's pretty fantastic.

So here's a basic rundown at the hospital for each MRI appointment. We arrive at 8:30am and I check in at the front desk (the girl, just a little younger than me, always smiles and says, "I remember you!" which I have to say is completely awesome). I then get escorted by the same gentleman who has some sort of accent which I believe is from an African country (I should ask, it's just that I don't want to be rude - it's none of my business, but I'm very curious). The gentleman who I can never remember his name gives me a key for my things, and a locker. I change into a gown and scrub pants. I'm allowed to wear undies and socks underneath but that's it. No jewelry, no hair clips, etc.

Once I've locked all of my goods away, I sit in a chair and the nurse wheels over a tray of medical stuff: syringes, medical swabs, gauze, cotton balls, blue gloves, needles, etc. This time, as the cart was turning the corner I recognized the face of my nemesis. The arm gouger. She is the woman that digs four or five times, searching in vein for my vein, until I can no longer stand it and she calls another nurse (who by the way, always gets the vein on the first try). When I saw the bad nurse, I smiled big and said, "You might not remember me, but I definitely remember you." I reminded her that she's supposed to get another nurse for my arm, but she wanted to try it just once. So, on she went, digging in my arm, swirling the needle all around the tissue underneath the skin. I silently counted to ten one hundred, two one hundred, and so on. When I hit 10 I said, "Ok. That's it with that." Bad nurse meekly apologized, and paged the other nurse. Once the replacement arrived she was immediately successful.

As soon as the IV is in place, they take me into the MRI room. The first thing you hear is the chirping of the MRI coolant. It sounds like little birds, as if you're in an atrium not in the basement of the UW Hospital. I'm placed on my back, with a contraption that holds my head in place. The assistants place a warm blanket on me, and I'm inserted into the doughnut hole (that's what I call it). It looks like this (these are not pictures of me):

The scan lasts approximately 30 minutes. It's a series of loud thumps, beeps, and screeches. You're supposed to hold perfectly still, with your eyes closed. The machine is exceedingly loud and even though people wear ear plugs you can hear all of the massive sounds and feel the magnate resonate through your body. This time though, it didn't hurt my head. Halfway through the scan they pull me back out of the machine. They inject a metal solution that runs through my veins. They quickly insert me back into the machine and start the scanning process again. The contrast dye gives a slight salty taste in my mouth, and when it's first injected I feel a tickle inside my arm, slowly heading up to my shoulder then it spreads throughout my body. It's a cool sensation, literally, it feels slightly cold throughout my body as it travels.

After the MRI we usually have about half of an hour, sometimes a full hour, before I meet with the radiation oncologist. During that time we visit, head to the cafeteria and grab some coffee or food. Lately I've been wanting to peek outside to check for squirrels. Seattle has the fattest, longest squirrels, it's great. 

When we went in for the appointment with the radiation oncologist this time, as we were looking at my brain scans in a communal area, I saw a woman in a wheel chair. She was obviously going through radiation. I couldn't tell how old she was, she could have been my age or my mothers. Because of the various drugs, her face was puffy. She had a few wisps of cotton candy fuzz on her head. She seemed very weak, like a sick bird. It was hard not to want to hug her.

Although my scans didn't look as stellar as we were hoping, I escaped having to do radiation. The doctors want me to continue on my three month span of MRI's and I'm fine with that. Looking at the images of my brain and the tumor was eye opening. I had been pretty lackadaisical on my eating. I felt powerful after my last MRI and took my health for granted. This MRI woke me up to the reality that although I am capable of running, working, playing, and challenging myself - acting like any other 30 year old, I also have a very real brain tumor and I have to take it very seriously. It's no joke.

Saturday, April 16, 2011

Clean MRI

Clear! I have another three months of easy sailing. There was a lot of "flare" which they said could either be swelling, irritation, or tumor growth. After further review the doctors decided that it's still swelling and irritation, and they don't believe that the white area is tumor growth. Wooooo hoooooo!

Thursday, April 14, 2011


Tomorrow morning, the 15th of April is my next MRI. I've been feeling happy and strong (albeit tired). It's the first MRI where I actually feel like I can handle bad news if it comes.

I went ahead and scheduled a hair appointment for tomorrow afternoon, knowing that if the MRI goes poorly I can always cancel.

Time to rest. It's a big day tomorrow.

Danny took this picture on his way home from work yesterday. He said he could see both ends of the rainbow. Seeing as it was the one year anniversary of the diagnosis, I think both of us took it as a wonderful sign. I'm incredibly grateful for this past year. I'm grateful for every single day.

Wednesday, April 13, 2011

One Year

At 10:15am one year ago, I received a phone call that would forever change my life. I was driving from my first MRI appointment, headed back to work, when a doctor told me that I had a large brain tumor. She told me they were holding an angio machine for me and I needed to come back to the clinic as soon as possible for immediate testing. They thought I had a cluster of veins - an arteriovenous malformation - within my brain tumor and that I had life threatening brain hemorrhaging. Those were her words.

After accidentally running through an intersection, I proceeded to pull the car to the side of the road. She never asked me what I was doing before blurting out the diagnosis. She did not ask if I was seated or if it was a good time. I didn't cry immediately, instead, I asked her if I was going to die. She said, "We hope not, but you need to get back here as soon as you possibly can."

When I hung up the phone with the doctor, I instantly dialed Danny's number. The second I heard his voice on the other line I lost it. Sobbing, I told him that I have a large brain tumor, and brain hemorrhaging and I reiterated the conversation with the doctor. He told me he'd be there in 2.5 hours, the distance between us. I then called my parents.

My mom answered the phone. I could barely speak. All I could manage was to tell her my location and that I couldn't drive. I heard my mom emphatically yell my father's name. We hung up the phone. As I waited and sobbed, I looked out the windows of my car, somehow noticing that my car was still in drive. I shut the engine off. I was on the side of HWY 97. It was a beautifully crisp day. There were cherry blossoms all around me. All I could think of were the cars passing me on the road. I thought about how no one would know why my particular car would be stopped. People were going about their day, headed to work, taking their kids to gymnastics, and here I was with the worst news I'd ever heard. I didn't know if I was going to live or die.

I will never forget how I felt. I'll never forget having to tell Danny and my parents. I was hysterical. I was absolutely devastated to break the horrible news, I knew that they were all going to be crushed and afraid. I cried for that. I cried for the pain that I knew they would feel. I cried because they're all so wonderful and they didn't deserve this stress, this change, this challenge. As I was waiting for my parents to come help me get back to the hospital, I deeply understood the magnitude of what was happening. I didn't know all of the medical details, or what was to come next, but I understood the severity and at that moment I gained an instant comprehension of the value of life.

Thursday, April 7, 2011

My Health Is A Gift

Today, my mother, my father and I wrangled all of my medical bills and did my taxes. It was incredibly emotional. Looking through the paperwork, seeing terms like emergency anesthesia, catheter insertion, physical therapy, contrast dye, speech therapy, etc. brought be back to what I've gone through in the past year.

It was eye opening to review all of the itemized bills, listing in black and white what I dealt with. It made me so thankful for my amazing body and mind. They're so resilient, so hard working. It's pretty easy to go day by day, but when I look at the big picture this whole experience is incredibly profound.

Danny brought into our relationship a beautiful lab/Chesapeake Bay retriever mix. I've come to see my body just like Emma (the dog). My body follows my mind everywhere I go, happy, full of energy. It does the best that it can on any given occasion. It thrives on challenges, seldom complains and wants to please me.

I view my physical body and my mind as two different entities. I think it's because I've seen first hand how they are intertwined but can exist relatively apart. They're very different but equally important.

I am forever grateful for my body. My body blows my mind. I went for a run today after work. I had been feeling heavily burdened by the reality of all of the medical things my body and mind experienced. I wasn't sure if I could do the three mile minimum that I like to place on myself for workouts. Once I stepped on the treadmill and started running, I began thinking about how badly I wanted to run after the surgeries but literally was not able. I thought about all of the work, all of the baby steps, that I had to do to get to the place where I am now.

Around the fourth mile I started quietly crying, pushing faster and faster, eventually ending with the final mile in 7.3 minutes. I can only hope that the guys on either side of me thought the salty streaks were sweat. It was a mix of happy tears and pain for my body. I'm not sure if that makes any sense. What I'm trying to say is that my body has been through so much, and it gives and it gives and it gives. The poor thing has been brought to the brink, and still it rises up through the pain, the discomfort, the confusion. My body is a gift. Each little cellulite, every masculine muscle, all of the wrinkles, even my lone saddlebag. I care much less about the imperfections these days because it takes me everywhere I need to, lets me push it to no end, and keeps coming back for more. I know I'm lucky. My health is a gift.

Tuesday, April 5, 2011

Flying Off The Cuff

Hi Friends! Sorry it has been so long for a post, I've been doing too many things, and I've found myself exhausted. So exhausted, in fact, that at the end of the day my mind is fuzzy.

My priorities are work, running, and sleep. After that, whatever I have left in my tank is used up on laundry and things of that nature. My brain has been pretty wacked lately. I'm not sure if it's just my schedule or what, but I've been having more severe headaches and what I call, "fuzzies." The fuzzies are when my mind feels like it's foggy. Hard to explain. It's like my brain is heavy, like a sponge that's soaked in water. Last night, without the help of a sleeping aid, I slept undisturbed for eleven hours. I basically went dormant.

Part of the exhaustion may be due to the fact that at night, before I sleep, I started reading my first real book. It's absolutely amazing! It was a recommendation from Jessaca's mom, and I'm telling you, she does not disappoint. It's called Unbroken, by Laura Hillenbrand. If you click on the title & the author it'll take you to where you can read an summary. It's a true story, and I'm telling you the writing is beautiful.

Anyway, I've been really challenging my mind with this book. I do some of the reading aloud to Danny which truly is the hardest part. I still stumble over more words than I used to, and the more exhausted that I become, the more words I don't notice. Danny's patient with me though, and doesn't mind helping me practice (It definitely helps that it's a WWII drama with B-24's and references to Zeros!).

I came to the computer tonight to share the stories of my presentations, but this is the blog that plopped on the computer screen. That's what usually happens with this thing, I'll have a plan to share a specific story, but it just never ends up the way I expect. I open the computer and my fingers start punching keys until there's a word, then a sentence, then I've got several paragraphs, and it was never what I was planning on saying. I guess it's just what I was thinking or feeling. It's nice being able to just fly off the cuff like that. No stress.

I'll share about the presentations soon, I promise. I will tell you now though that the people are so gracious when I share my story. At the end of my little presentations I feel so grateful to have the chance to share. It's honestly a very selfish thing to do, sharing my story. I'm able to communicate, connect, interact, laugh, smile, answer questions, hopefully inspire someone, and challenge myself. It's such a fantastic opportunity. My whole goal is to leave people appreciating their life, find their smile, challenge themselves and absolutely, under no circumstance, give up. That it. That's my goal. It might be lofty, but it's fun to try!
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