Date Night

 (Sorry the photo is so blurry, I panicked and tried to get the shot before the screen changed. Even though the photo isn't great Danny was really impressed that I got the shot. He called me "quick draw." I'm sure he was referencing a spaghetti western or something. Either way, I'll take it!)

Last night, Danny and I had our first date since before the surgeries. We loaded up the truck and went to the drive-in movie theater. It wasn't exactly a romantic movie, but The A Team was pretty nostalgic for both of us. Of course, in my opinion, any movie can be romantic when you're at a drive-in! In fact, Danny and I saw two shooting stars! I won't tell you what I wished for on the first shooting star, but the second one I wished that everyone I know, everyone that I've ever met, would have a moment of complete relaxation. Hopefully, whether or not you knew it, you let out a big sigh of happiness. For the record, I don't believe that telling the wish ruins it. Maybe on birthday cake candles, since that only happens once a year, but regarding spontaneous wishes it's fine to tell what you're hopping for. Just my opinion.

I wished for a moment of complete relaxation because things get crazy in life, and we all need a moment or two to regroup. When I used to get worked up I would try to tell myself, "relax, relax, re-laaa-ax." But, lately, I've found an even better way to lower my heart rate. Instead of focusing on me, I close my eyes and silently talk to myself about all the things I want for my friends (the health of their babies, happiness at home, the fortune to find their big love, success at work), and I think about my dreams for the people of my town, of my state, of my country, of other countries, and for the world. I'm not sure why this new technique works as a de-stressor, maybe it's because it takes me away from myself. Who knows. Either way, it's insanely relaxing, and it makes me really happy.

Novelties In Life

Here are some photos from last weekend. Luckily, there's no such thing as a bad photo on the island. It was incredibly fun re-introducing myself to a place that I love so much! For example, I don't remember seeing snails on blackberry leaves before.

I've always considered myself to be very observant, but I could never understand why I had such a hard time remembering things (details in old memories and things of that nature - long term stuff). In fact, I can't count the number of times a friend, or family member has told a story that included me and I have absolutely no recollection of the event. Finally, now I know that I wasn't causing the lack of memory (due to inattention), but that my tumor was shoving my brain and taking away the real estate. Which oddly makes me happy, and makes me feel like I'm not crazy, or oblivious. I'm sure I've seen snails on blackberry leaves before, but often I get to feel like things are a new experience even though logically I'm sure I've experienced them before. I'm kind of like a child, very excited about the novelties in life.

The Busy Squirrel

Jeez. Once you start going, you're never able to stop! There's never enough time in a day. So much for Friday Harbor Stories...maybe I can integrate them into my coming blogs.

Today, Danny and I had to wake up at 5:30am to head out for my 9:00am doctor's appointment at the UW in Seattle. I'm starting back up with speech therapy. Since I will be needing radiation therapy, chemo, and multiple craniotomies in my life, I figured I needed to learn some tricks to keep my mind alert, and tricks regarding speech and cognitive stuff. I know that there are going to be times in my life when I will have to relearn many things, and the better I prepare myself the easier my life will be in the future (and easier for Danny, my mom, my dad, my bro, and anyone else that comes into contact with me). I've always a been the kind of girl that does the dishes before bed because I hate waking up to a mess - same concept, it's just regarding my brain.

Random story, I remember having to relearn brushing my teeth. The paste had been squished onto the head of the toothbrush, and I reached over and grabbed it. I then started poking the outside of my cheek with the handled end of the brush. It was bizarre. I knew something was odd, but I couldn't figure out what was wrong. That's only one story, there's a multitude of stories, and there's no guarantee that the next surgeries won't be the same situation, or even worse. I'm not trying to say that to scare anyone, it's just a reality. I'm not scared, not right now, I might be scared in the future or jeez maybe even tomorrow, but I like to prepare in advance. I'm kind of like the squirrel that has the luxury to invite the neighborhood squirrels over for dinner in the winter. I'd rather be well prepared and be able to share. 

Also, by the recommendation from my speech therapist, after this appointment I've got two more doctors to add to my team. I've got a neuro-psychologist and a rehabilitation counselor.

I should be notified in the coming days regarding my new appointments. The first is to asses my cognitive abilities. It will include a battery of tests that takes eight hours. The other doctor is a counselor that deals with patients with what they call "traumatic brain injuries." The second doctor's appointment is basically a one-on-one counseling session. I'm extremely excited for both.

I know that friends, and most of my family, think that I'm back to normal, but the truth is that I have a long way to go (and for the record I'm thrilled that I seem fine - it's a huge compliment!). In fact, I have a long road ahead of me both regarding my current recovery and then with my future health (medically, mentally, and emotionally). The best I can do, is learn tricks to be successful at all stages.

Happy Tears

I just returned from Friday Harbor, and it was overwhelmingly amazing! I have so much to say, but since I'm so exhausted, I'm not sure if I'm going be very cohesive. I don't even know where to start. Here goes my best shot.

When I first pulled into the harbor, riding the ferry, I suddenly became extremely emotional. I started to worry that maybe the trip to the island was a mistake. I was intimidated by the thought of running into people, not sure if people would recognize me, or that I would have to do a lot of explaining.

As Danny and I came off the boat, we walked up to the Crab Shack (Danny was drawn in by the smell of the fajitas wafting through the open air market). While we waited for Danny's lunch, I was hiding behind my sun glasses, looking around and hoping that I didn't see anyone I recognized. All of a sudden a familiar face popped around the corner. It was a guy that I went to high school with, panicking, my heart rate jumped through the roof. Instantly, I had a billion thoughts run through my mind, "Does he recognize me?"; "Does he remember who I am?"; "Does he even know that I have a tumor?" But just as quickly as those thoughts flooded through mind they were squashed, because he took off his sun glasses, came straight toward Danny and I, and gave me a huge hug. The first thing that came out of his mouth was, "Holy cow, you just made my day!"

Even though this guy was my age, and we'd grown up together, we hadn't been really close friends. I later learned, from our conversation that it was his 30th birthday. I was completely blown away, that on his birthday he told me that I made his day. It was such a heart warming statement, that was so sincere and kind. It was exactly what I needed. From that moment on I relaxed. I'm so grateful for his kindness, I can't even begin to explain it.

From that first interaction on the island, I knew that it was going to be an emotionally healing weekend. Driving through town, as we went to the house, I gave what would be the last cry of the weekend. It was happy tears to be home, a place that fills my soul.

Friday Harbor

Danny and I just arrived in Friday Harbor for the weekend. I have the perfect blog to write but I just don't have time. Hopefully I can share the story in the morning. Adios!

The Decision To Try

  

Last night, feeling exhausted yet restless, Danny and I headed to the gym. I warned Dan that I wasn't really sure if I could last long, and he said, "Hey, even if we only go for 30 minutes, at least we went."

Once I got on the treadmill for a twelve minute warm up I started feeling better. My legs started stretching out and I started jogging. Before I knew it I was hitting the cool down period because I had reached 60 minutes. I can't believe I jogged four miles! It was a nice pace, 12 minute miles, and no headaches! I've decided that the easier the pace the longer I can run. I'm not pushing it, just listening to my body. 

On the way home from the gym I saw this quote on the avenue. I thought it was absolutely hilarious that my inspiration was up on a sign above a burger joint. What a simple, yet profound thought. As we drove home I realized that all I'm doing is just putting one foot in front of the next and it's working. I still haven't given up even when things are hard. I'm proud of myself. I still want a shirt that says, "I don't just have a bad hair cut, I'm surviving a tumor." Just for the record :)

Two Different Personalities - One Body

Last night I was trying to explain to Danny how odd I feel. It almost like I'm trapped with two different personalities in one body. Half the time I'm laughing, and enjoying myself, and the other half of the time I'm afraid, and anxious. The weirdest part is that I might look like I'm smiling and enjoying myself, but often times, behind the facade, I'm in a dark place, full of fear and pain.

I just received a letter for my next MRI appointment and doctor's visit. Now, instead of meeting at the surgical pavilion on the third floor, I'll go in for the MRI and then meet with the team of oncologists on the first floor (in a radiation oncology exam room - how intimidating is that!!). It's a little change, but it strikes my heart with fear. Probably 100 times a day I get scared, I remember the pain, and I try to dig myself out of those dark places. I'm starting to get really exhausted, just trying to be positive. I'm going to need some more tricks.

One of the tricks is going to have to be leaning further on Danny. I started reading about my type of integrated tumor and it was a big mistake. I need to get back into the habit of just enjoying my life, as best as I can. There is nothing more that I can do, other than make healthy decisions and be happy. A surprisingly hard thing to do when all I want to do is hide under a rock and pretend this isn't happening.

No Limit Of Kindness

Last Saturday, instead of doing the Chelan Man Olympic Triathlon which I had been planning on conquering (prior to the diagnosis), I attended a concert.

We went to the concert with a group of friends, a group that knows no limit of kindness. They're always making me laugh, and they never disregard my ridiculous moods. They always make me feel like I'm completely normal, even when I can't seem to believe in myself.

At first, I didn't want to be in any of the photos, and I would hide behind other people's heads, but soon I realized how rediculous I was being. So I don't have hair and I feel fat. Oh well. I told myself to just deal with it and suck it up. I'm glad I did, because now I have some memories. I guess I can be pretty vain.

too bad we were missing Jessaca - she had the fancy seats down front :)

I think that's my hardest hurdle socially. I don't want to be in photos. I don't want to look at myself. When I see the photos, it all of a sudden becomes so real. I can no longer pretend what I've been living through, and the uncertainty of my future. I can't wait for the day when I can really relax, truly feel safe, and unload my sadness.

Swamp Monster

This photo is of Danny's feet. I don't know why it makes me laugh so hard. I guess it's because he's absolutely filthy. I'm pretty sure I may have referred to him as a swamp monster.

Mother Daughter Day

Sorry for the lack of posting - life has been insanely busy.

On Friday, I spent the entire day with my mom. Halfway through the day something hit a note and triggered a nerve. For the first time since my diagnosis my mom and I shared good old sob for about an hour.

It was therapeutic, and yet scary. My mom is always trying to be the strong one, and it's hard see her with so much fear, and pain in her eyes.

This brain tumor is incredibly hard on my family...it's hard on everyone around me.

The day was so emotionally exhausting that I didn't document the day with a photo. I know that I could have taken several different photos, but it wouldn't have been sincere. The whole point of this idea is to find things that help me experience new things, and noticing things around me that bring me joy. I should have just taken a photo of my mom, because I saw my mom in a different light that day. She's quite strong, and yet very fragile at the same time. 

A Little Heart

I needed this photo today, or I guess I needed to spot this graffiti. I needed a little heart. This afternoon, Danny and I ran a bunch of errands. I don't think I've been out in public much, other than a short trip here or there, but today Danny and I traversed the land. In doing so, I came to the realization that I have a quota regarding two things: looking at my own reflection, and being looked at.

I've been very safe in my choices, whether it's with good friends, locations like the gym, or being home. Somewhere between the fifth stop and the ninth stop (the duration was never longer than 15 minutes each) I started feeling incredibly sad.

It's impossibly hard to continuously look in a mirror, trying to find something that fits you, or catch your own reflection in a window. I've gained about ten pounds since my surgery, and my clothing is too tight. Mix that with Wenatchee's 100 degree heat - it calls for disaster. By the end of the day I felt like a big puddle, not just because I was so sweaty but because I felt like my spirit was a big teardrop.

I don't want to try and find clothing, I just want a moo-moo. One color for each day of the week.

Sometimes I forget that I look so different than I did before the surgery, before the buzz cut. Shopping today woke me up. There's nothing fun about feeling uncomfortable in your skin (or your tight pants).

Oh ya. And I found out today that my medical insurance has no cap. I almost threw up at the news. So much for not panicking.

Just Two Normal Folks

Oh goodness. Although I didn't do a blog yesterday, I DID manage to continue my photo-a-day project. After almost a full day of work (grunt work cleaning tarnished wire), jogging two miles on the treadmill (no headaches!), and BBQing with friends, Danny and I were exhausted. This was my favorite photo of the day. We were relaxing, as normal people, together enjoying a warm summer night.

The Mother Load

I was wandering around my patio today, when I saw a huge bumblebee. Curious, I followed him toward my garden and watched him jump (not literally - he flew) from flower to flower, clearly favoring the hollyhocks. The little fatty was visiting each flower, grabbing the pollen and rubbing it all over his body. Truly, he was using his arms to shove pollen all over his back, legs and arms; it was adorable. I instantly realized that I would have looked something similar if I found Willy Wonka's chocolate factory, which of course made me laugh out loud (and then I had to find Danny to show him). The big guy had found the mother load. Pretty fun for both of us.

On a side note, I jogged for the first time!!!! Although, some might not count it as jogging since it was only a 14 minute mile (and I only did 1/2 mile), but I'm taking it easy. I'm thinking I'll start slowly training for a 10K for the end of September, just before my next MRI. I know it's almost disgusting to love running that much, but it makes me feel free. I don't have a headache yet, the truth will come out tomorrow. Cross your fingers!

The Hills Are On Fire

There's a forest fire across the river from our apartment, so we went to check out the sunset (gotta love the smokey haze that oddly makes the sunset look even more beautiful, and mysterious). Fires are awe inspiring, and mesmerizing. I couldn't take my eyes off of the glowing hills, and the plumes of smoke. Even though the fire is few miles away, we could still hear a loud pop, here and there, as a group of trees went up in flames.

I didn't really want to walk down the road to check out the fire, but I have my 'live it moment-to-moment' concept so I had to get off of my bum and give it a chance. Well, actually, it's not that I didn't want to see the fire, it was more a matter of effort. But, if I hadn't gotten out of the house I wouldn't have seen such an amazing sunset. I'm enjoying my new ability to spontaneously see what's going on in the world around me.

Life is happening. 

The other day Danny told me about a friend in college who was wheelchair ridden. His whole motto was, "The wheelchair can be a part of my life, or my whole life." Danny doesn't keep in touch with that guy from college, but his words were unforgettable, even years later. It's amazing how some things stick with you. I'm grateful for that guy. He might never know how much he's helped my perspective, but his words helped me decide to really enjoy the good things in my life. And without Danny's compassion toward his friend, and his compassion to me, I might not have ever heard that story. A double gift.

Adjusting Expectations

I only cried four times yesterday. After such an emotional trip to the UW, I consider that a success! I think crying is a pretty natural thing when you're mourning the loss of your expected life. I'm not sure if that makes sense. I guess I'm trying to say that I had certain expectations about my life. I thought my life would be on my terms, that if I respected and cherished my body it would do the same, but there are so many variables. Now I'm adjusting my expectations.

 

All I know is that I have three months before my next hospital visit, the next needle pokes, and my next MRI. During that time I've decided to take a photo every day doing something different, something I either haven't done, or haven't noticed, in a long time. I'm going to purposely go out and find something to make me smile, or laugh, or enjoy. I have three months, I choose to make the best of it.

Yesterday (day 1), I went for a walk along the loop trail with Danny and Emma (the dog). At one point I let Emma off her leash and she went bounding toward the water, not realizing that there was a ledge. She put on her brakes, but couldn't stop herself in time. She landed haphazardly into the water and Danny and I laughed for a good ten minutes! The photo of Emma was taken just after she landed in the river. I think this one-a-day experiment is going to be better than taking medicine!

A Little Hope Goes A Long Way

I'm not sure how to tie everything together in this post, but I'm going to give it my best shot.

My MRI showed up clean (relatively speaking). Originally, the surgeons had to take a sample of healthy brain cells as well as all of the tumor cells. This way they were able to further test the cells and determine what is causing my tumor. My tumor is composed of Glial cells. This means that our biggest concern is my current tumor location. We're watching the remaining tumor vigilantly because the excess tumor is right in against/in my speech. They couldn't remove all of the cells in that location and there's nothing they can do surgically. As the tumor continues to grow they want to radiate as soon as they need to, trying to save my language.

The doctors do believe that I will need radiation, chemo, and more surgery but they don't know when. Because they can now tell that my tumor is comprised of Glial cells they believe that although the tumor growth could come as soon as my next MRI or some time in the coming five-ish years. There is a 1% chance that I'll never need any further treatment. Not the best odds, but at least I know what I'm up against.

I'm really relieved to know that I can relax for the next three months. The plan is to continue on MRI's every three months for several appointments. If they continue to show clean results, they will shift the appointments to every four months.

The doctors explained the deal regarding radiation therapy because they believe it will the next step. When the time comes to radiate they will take multiple beams from different locations through my head pinpointing my tumor. The process will take between 3-6 weeks. I'll come in every work day for an hour and I'll rest on the weekends. During the process I will most likely lose my hair, specifically in the large area that held the tumor from the inset. There's no guarantee that my hair will grow back in the large section on the top/back of my head. If my hair does grow back it will grow back thinner, and most likely not return curly as is the rest of my head. Another concern is that radiation damages cells. It has been shown to kill both healthy cells and tumor cells in the brain, causing damage neurologically. Since the concentrated rays will be in my speech center I could see a deficit in my speech and language skills. Unfortunately, the rays going through my brain will pass through other locations which will damage other healthy cells and could even cause another tumor. Then of course there's the nausea, the burning of the skin, etc.
The doctors believe that radiation therapy is just a matter of time. So right now, I'm starting to realize that I need to really enjoy myself. I need cherish my ability to communicate, enjoy my poofy hair that's growing in thick and wavy, be grateful for every moment that I'm healthy, and let the doctors worry about my brain while I worry about my happiness. That last part was exactly what my radiologist told me, and it was such a sweet statement. I know I'm in great hands. I know it's still going to be hard, and the reality of my life is not what I was expecting, or what I was hoping, but there is nothing I can do other than live my life, being the best person I can, and try not to get too scared/depressed.

One more great thing, the surgeon, and the physical therapists told me that as soon as I feel up-to-it I can start jogging. I'm thrilled that I'll be able to run soon. A little hope goes a long way. They did say to be careful and to trust my body - not to push it too hard. The chief, Dr Silbergeld said, "Honey, you can do whatever you want!" And then he looked at Danny and said with a smile, "No cleaning, no cooking, or work."

Oh ya, and they tapered off my anti-seizure medicine! In two weeks I'll be pill free! It's all about the little victories!

MRI Results

We just got home from Seattle. We had multiple appointments today. All in all we spent 5.5 hours at the hospital, along with a total of 6 hours of driving. There is a lot of information to process, I'll give a more in depth post tomorrow. For now, the main point is that I don't have to do radiation or chemo at this moment. The doctors shortened the lengths between my MRI's and I'll be back in three months to re-evaluate. I learned a lot, and I'm exhausted. There's a lot of great news and I can't wait to share it with you! For now, I'll sleep.

I've Never Been A Quitter

Alright. I'm ready to face the results and the news on Friday. I'm just going to treat this like any other big hurdle. I'm no stranger to setting goals and working toward a finish line. I know that sounds completely cheesy, but I have to take things one step at a time. I was talking with some friends the other day, and I keep forgetting that this is all so new. Two months out of consecutive brain surgeries, and yet I've made so much progress. Instead of putting myself down, I need to get back to setting small goals and accomplishing them.

Just under a year ago I conned a group of friends (Danny is missing because he's running) into running the Leavenworth Oktoberfest Marathon Relay. Our team may not have won any medals, but we definitely came up with the most clever team name, Operation Grab-A-Stein, and obviously we had the best outfits. 

 

This our very serious soccer league team photo from a year ago. We had to look tough since we never won a game (or did we...I can't remember if we won once or not. That should show how much fun we had...we weren't even paying attention to the score. We were ridiculous). Victorious Secret was a misleading team name.

  Our Wenatchee Marathon Relay Team two years ago, The Stimulus Packages. There was a catchy phrase on the back of our shirts but I can't remember what it said. I'm sure it was clever, since Michelle made 'em.

  

This last photo is my favorite, it was taken just before my first half marathon several years ago. I was so excited for this race; I had been training for months. My only goal was to run the entire 13.1 miles without walking. I did it.

Look at my goofy smile in the middle of the madness. Even at the hardest moments of that race I was intent on finishing. I just kept on running. I'm not going to lie, I was neck and neck at the finish line with some speed walkers. Either they were the fastest speed walkers in the world or I'm the slowest jogger in the world. No big deal. I accomplished my goal.

Now for my next goal. Between now and my MRI on Friday I will mentally relax. I will enjoy my accomplishments (both in my life, and over these past few months) and reminisce. And who knows, maybe somewhere along the way I'll find my smile again...I have to keep looking. I've never been a quitter.

Really?

Is this really happening?

Am I really dealing with a brain tumor?

Is this really my life?

I just hopped on to the internet and a goggle ad proclaimed, "The bucket list for Seattle. Things you should do before you die."

Thanks for that Google Ads. Great.

Follow Up MRI

We found out this morning that my three month follow up MRI is happening this Friday which is actually just past the two month mark. I had a minor panic attack when I found out.

I was expecting three more weeks. It will be nice to have answers, but I'm a little overwhelmed that it's happening so soon.

Danny and I have kept a white board in the kitchen where we write down questions for the doctors. I guess it's time to review my list. The MRI is this Friday at 11:00am and I'll have the results at 12:30pm Friday afternoon. I'm really excited to see Dr Silbergeld and Dr Lucas, but I'm still pretty nervous.

I know that no matter what happens on Friday, it is just going to happen. Nothing will change between now and Friday, it's just finding out results. There is nothing I can do. This situation is out of my control. I'm just going to try and live my life and breathe deeply.

Cell Phones

The other morning I woke up and decided to get more information about the levels and types of cell phone radiation. This is the first time that I've "Googled" anything or done any mild research. I've only just begun learning about the debate.

The cell phone radiation question popped into my mind because I've been wondering about risk factors regarding brain tumors, specifically my type of brain tumor. The doctors only told me that my DNA caused the tumor cells. Essentially I thought that my body was attacking itself and that was the end of the story. But since I've started reading different dissertations, and research studies, I'm starting to look at a different, more complex picture.

I finally caved in and purchased my first cell phone in 2000. I have been on a cell phone ever since. Between my years in Texas, and Wenatchee I've spent a majority of my days or nights on multi-hour calls visiting with friends. Since high school and college my friends have lived all over the country and all over the world. My cell phone was my lifeline. I find it suspect that my tennis ball sized brain tumor was located exactly where the cell phone antenna touches my head, in exactly the side of my head that I used my cell phone.

I know that there is a lot of debate on this issue, but the truth is that cell phone technology is extremely new. There haven't been enough long term studies to rule out the danger of cell phone radiation. I also know that two individuals that smoke a pack of cigarettes a day over the period of 30 years will have different outcomes. One may die of lung cancer, and the other may be just fine. Our bodies are amazing, and unpredictable, but there's a chance that the radiation in cell phones may have effected my brain tissue adversely whereas someone else may have been fine.

There are a lot of issues regarding cell phone use. I'm too exhausted to continue this post which has been in the works for four days. If you get the chance, or if you're curious please research cell phone radiation, and long term cell phone usage, but don't stop at the basic websites, dig deeper. Most studies are funded by major cell phone carriers.

No Jogging Yet

I'm so frustrated. I'm exhausted. I sleep 13 to 15 hours a night. My thoughts don't come as easily, and I feel like I used to be able to think more deeply. These days all my head hears is frustration and complaints. I don't want to irritate my family and friends so I don't want to complain too much. I only share about 20 percent of my negative thoughts. I'm trying to force through things but it's hard. If I hear someone say, "Ugh, my hair looks awful!" I think, "Shut up, you idiot." I realize it's a pretty bitchy thing, but I just don't want to hear it. At least they have hair. I think the same thing about my hair, but I feel like I've got reason to hate my hair, or lack thereof. I realize I'm pretty self absorbed at the moment.

At least I've worked out three days in a row, it helps me keep a better mindset. Heaven help me if I wasn't working out. Today Danny and I did the treadmill and I walked quickly while Danny jogged. Of course, in my mind I was saying, "Jerk." I want to run so badly that I turned up my treadmill just to try it and in three steps I thought my head would explode. Danny gave me a look and shook his head and I went back to walking. No jogging yet.

I'm stuck between wanting to get back to my regular life, back to debating, and dinner parties, or wine dates with the girls but I don't feel back. I'm still hovering between my constant headaches, pressure in my skull, intermittent confusion, irritability at multiple distractions, all the while these issues in my mind are silent. Most people don't see these issues. They don't know what I'm thinking, or dealing with. I thought the beginning would be the hardest part of recovery. Now, I feel like I'm battling in silence. And I want so badly to get back to normal.