Thursday, September 30, 2010

Curse The Memo

Danny and I just returned from back-to-back doctor's appointments in Seattle. The first appointment was speech therapy, and the second was my first visit at the psychologist's office (who deals with terminal illnesses).

In the first hour, during speech, I read aloud a one page explanation of a workplace. Afterward, my task was to write a memo to my hypothetical boss describing the problems, and providing solutions. When my therapist, Julie, asked me to write the memo I completely drew a blank. I didn't know what to say, I couldn't remember the points, I couldn't form an introduction sentence. I didn't even know what the problems were. A thousand words of gibberish swirled through my mind, and I felt my face get red. I stared at the page, and tried to focus. Before I knew it I was crying. I couldn't stop myself. I couldn't process the information. The thing is, she gave me ample time to quietly figure out, but as the silence grew, and I knew I didn't have any answers, my heart broke.

I used to be excellent at reading comprehension. I was one of two (or maybe it was three) students who received an A in my Texas Christian University freshman composition course (the standard English class - a prerequisite). I'm not saying that I was a suburb student. In fact, I was an A/B student. That's why that grade was so important, it was a serious accomplishment. Now, being that I'm unable to process and organize information I'm humbled, and disappointed. It's incredibly painful.

For some reason I'm able to write how I feel, what I'm thinking, and things that are happening in my day to day life. I write how I think, and it's organic. I can't seem to organize thoughts to support an argument, or opinion. That's my homework for this week. Julie asked me to find something that I have an opinion about. I'm then supposed to explain my opinion, and use supporting reasons as to why I hold the opinion. It sounds easy enough, but on the three hour ride home I still couldn't think of anything. Oh well. Maybe it'll come to me.

As for the psychologists office, no crying there! It was a basic session, and I really like her. I have a feeling she'll help me process some of the things going on in my life. We actually laughed a lot, which was nice. I don't meet with her again until the day after the MRI. So, I'll be full of emotion, either excitement and happiness or fear and anxiety. Either way I'm sure the meeting will be helpful.

Here's my photo of the day. I like to grocery shop while I go to the doctor's office. I'm a huge fan of Trader Joe's, and Wenatchee doesn't have one. I always load up on the good stuff, and today I spotted a new treat. I've heard that sea vegetables are incredibly good for your brain. Unfortunately, this snack leaves you with bad breath and green flecks in your teeth. And it's not exactly delicious. But I ate it. Because it's good for me. If I sound like I'm complaining, it's because I am. It's pretty gross. The things I do for my brain.

Wednesday, September 29, 2010

Book Club

I'm sitting in my office (which is the dining table), drinking a deliciously fresh cup of coffee. It's sunny. I had a great night sleep. And yet, I'm still feeling that slight twinge of uneasiness. Kind of like nerves before a date. Instead of having a biological clock ticking, I have a MRI clock ticking.

I'm doing a pretty good job of focusing on the important things. For example, the book club is meeting at my house tonight. Usually, I would go crazy cleaning. Hitting the usuals like vacuuming, mopping, cleaning the bathroom - and the other not so usual spots like the baseboard, rinsing light bulbs, organizing shelves in the kitchen, spot polishing silverware and dishes. These days, instead of being anal retentive about cleanliness when I have guests, I'm just taking it easy.

Yes, I'll clean the bathroom, but no, I'm probably not going to clean the baseboard. I'm actually looking at the baseboard right now and it's completely hideous. It's really disgusting, so I might actually clean that. But maybe not. I don't think any of the girls will care if I have dusty baseboard. I guess, people aren't going to judge me by a dusty baseboard. And if they are, they're definitely going to find more things to judge, and that would be impossible to prevent.

Back that that awesome mantra: Just enjoy life, and breathe.

...and maybe go clean that baseboard. Seriously. It's gross.

Monday, September 27, 2010

My New Mantra

I just finished weeding my garden. I needed a distraction. Life is great, my family is amazing, my friends are insanely wonderful, the weather is fantastic, and yet I'm starting to feel the twitch of this next MRI.

I've been working out, although not as much as I had been. I'm seeking comfort foods like goat cheese and grapes (just like potato chips, you can't stop at one). Neither of which should be consumed in the quantities that I have been.

You know, it's actually a double edged sword, this MRI. On one hand I'm excited by the idea of a clean scan. It would mean that the headaches, spot heat in different locations around my brain, pressure, and things of that nature are all completely normal. I can chalk it all up to healing. It would be incredible to be able to ignore a lot of the symptoms. On the other hand, if I don't receive a clean scan, I don't know if I'll ever be able to relax when I have pain, heat, or pressure.  

Last week while at the UW, I requested a few records from my file. I was looking for my actual diagnosis and pathology. When we were selecting the proper paperwork we received a printout from the emergency brain surgery. It was a play-by-play. That was a rough one to read. I knew I didn't have to read it, but it was impossible to stop. Highlights include, exuded under pressure, bone flap, myocutaneous flap, stab...I think you know where I was going with that. Anyway, no wonder I had such a horrible headache from that surgery. The first surgery wasn't that bad.

Here's the official diagnosis: Infiltrating Astrocytoma, WHO grade 2
(There are multiple types of infiltrating astrocytomas, and we're digging through the pathology to determine more information.)

This stuff is heavy, and I can't completely understand what's being said. Danny and I try to read, and research the terms, but it's exhausting. Maybe I need to put off the research for a bit.

In the coming weeks I've got all kinds of fun things planned (book club, marathon relay, girls slumber party - you're never too old!). I know I won't be bored. I'll practice sleeping (for example, last Saturday night I slept for 16 hours). I'll laugh. I'll live. I'll remind myself that the results are out of my control. Already, that last sentence just gave me a huge sigh of relief. Just breathe and enjoy every moment. That's my new mantra.

Thursday, September 23, 2010

Post Surgery IQ

Yesterday was UW day. Speech therapy was a success. I've been transposing the majority of my numbers, which is weird. I hear the numbers, and then write them down differently. I can even stare at the number I'm typing and I don't notice that it's the wrong number until the telephone call won't connect, or the credit card won't go through. It's frustrating, and it's causing a serious problem at work. According to my therapist, it's completely normal after having brain surgery. It's expected that as my brain connections find new pathways, my abilities will improve. It's odd though.

All in all I'm doing really well with the recovery, in fact I usually feel great! That is, until a day like today happens when I completely mess up at work. I've been working between 2-4 hours a day, and 3-4 days a week. A lot of times I'm gone for doctor's appointments, or sent home because I look exhausted and they want me to sleep.

I used to be a purchasing manager, and since recently starting work again, I thought could handle my job. I've been working little by little, trying to resume my responsibilities. In the past I've felt completely confident with my abilities. I used to be able to juggle ordering the right products, at the correct quantities, under the constraints of minimums, while meeting up with the ebb and flow of seasonal demands. Well. No longer. I tried to do a purchase order, and the product came in today. Not only did I miss two complete products, two completely different products are already out of stock. Yep. That is four errors. This is a colossal mistake. These products are for our largest customer, who was already upset about our lack of product availability. The lead time is months. I honestly wanted to vomit, and at the same time cry. I feel like I've always been incredibly reliable, and helpful with the team at work, but now I'm not only unable to do most of my job description, I'm also making their jobs harder. Ugh!

Therefore, this afternoon I demoted myself to customer service, and yet I don't know if it'll help anything since I can't even take down a credit card number correctly. I feel like a complete idiot. Luckily, I'm pretty funny :) I guess I'll lean on that for a little bit while my little neuron-y things power through my brain and connect.

Speaking of neuron-y things, I have my three day battery of tests on Oct 11, 12 (just after my MRI), and the 13th to check my abilities and IQ. The problem is that I'm not sure if I want to know my current post-surgery IQ. This experience is helping me realize that the most important personality trait, or ability is not intelligence, it's compassion and having a positive attitude. Or, is that just something someone says who isn't very intelligent.

Sorry this whole post is so jumbled. It's been a weird week.

Wednesday, September 22, 2010

The Goodness In Life

One thing about this blog is that it allows me to purge my feelings, and my fears. Once I put it in the blog I'm able to walk away, literally, and go out and live my life. It's a type of therapy for me. I guess we all have different coping mechanisms in life, and mine is writing.

At every turn, the world keeps showing me the goodness in life. With this diagnosis, I still believe that nothing is too wonderful to be true!

Tuesday, September 21, 2010

No Pretending

I'm exhausted. Yesterday, Danny spoke with my radiologist's nurse and asked several questions about my recovery, the treatment options, and what's expected as this tumor grows. After processing the information, I did a lot of crying. I'm scared. I know that I'm doing okay right now, but I'm still afraid for the future.

The nurse said that because the tumor has grown into my brain mass, like little fingers, that other than radiation there won't be a lot of treatment options. Although I have the void where the majority of the tumor was removed, the tumor will most likely continue to grow both in the void, and within my gray matter. The main concern is the tumor cells growing within my gray matter. As those grow and multiply, I will start to have more and more trouble with my cognitive function. I'll progressively lose motor skills and physical abilities. It is expected that I'll lose my ability to communicate, and the ability to take care of myself.

That's a lot to take in. I realize that there are miracles, and that there's still a 1% chance that everything will be fine, but it's still hard to hear. I don't want to be treated with kid gloves, and I don't want to pretend that this isn't happening.

I'm grateful that I have the time to prepare myself for what most likely will happen. I'm grateful that I still have my cognitive abilities, my speech, and my physical health at this point. I still miss my long hair, but other than that I'm just extremely grateful for my life.

I'm lucky because a lot of people never get to plan and lessen the blow.

It's just hard, that with each piece of new information I have to analyze my life. Danny has asked me to marry him, many times now, but how can I feel good about the burden that I'm putting on him. What a horrible position for him to be in. I'm so grateful that he loves me so much. I'm still afraid to legally marry him. I know that when a single person without assets dies, their debt dies with them. If I marry Danny, when I die, he is blessed with not only anguish but what could turn into massive debt. How can I feel good about that? The cost of radiation, any new treatments, experimental treatments, traveling for treatments, medicine, physical therapy, speech therapy, his time lost from work carrying for me, paying for health care when I'm unable to function on my own during the day, then coming home and taking care of me, I'm afraid of that future. Danny doesn't deserve this reality.

Monday, September 20, 2010

Sara's Salmon Run

My friend Sara did the Salmon Run in Leavenworth yesterday. She emailed me and wrote, "I proudly wore my Team Jess shirt today at the Salmon Run.  It definitely helped me through 1.5 miles of almost constant up hill!" What a sweet thing to say!!

Sara and I met at Gold's gym. Last winter, we were part of a crazy crew that went to a 5:00am exercise class twice a week. I hope that with patience and time, I'll get my speed and distance back so that I can run my little butt off the way the Sara does.

Sara at the Salmon Run yesterday:

Sara was making fun of herself because of all the sweat in the photo but I think it's awesome! It just shows her hard work. Thank you Sara. You're an inspiration!

Sunday, September 19, 2010

We Did It!!!

My body hurts the way it used to back in the day of my half marathons. In fact, I've already taken two naps today! It was weird to see my 10 minute mile (literally it was exactly a 10:00 minute mile average), especially since I was truly pushing myself as hard as I could. Long past, are the days of a 7, 8 or 9 minute mile.

Boy has my running life changed. I used to train with sprints, long runs, interval runs and insane cross training. Now, I'm just grateful to run without walking. During the race, I put a good game face on, but inside I was about to die right around the 4 mile mark.

At the end of the race, just before the pedestrian bridge, I started to worry about having a seizure. I was so exhausted, I was practically panting. I had spotted the rest of our group (that did the 5k) in the distance. I was grateful for our t-shirts because it was much easier to spot them! About a half mile north of the finish line I kicked it up a notch. Our group of 10k-ers started running even faster to catch up, and we found our original team. They cheered us on, giving us the burst of energy we needed to cross the finish line.

Thankfully, I ran across the finish line healthy, happy, in fact THRILLED and so incredibly grateful for our crew! There is no way that I could have finished this race without all of the support. In fact, if Danny, Annie, Michelle, Kristin, Cari and Heather hadn't have done the 10k right by my side I would have walked long before the finish line. Good thing I'm stubborn and competitive. I didn't want to drag anyone down, so I powered through and played it "cool."

I want to personally thank the members of Team Jess. Many walked, many ran, and many cheered us on in person and in spirit! We even had teammates that are in other states, and even other countries. The support carried me through, and I'm constantly surprised by my wonderful friends and family!

Here are some fun photos from the race:

Friday, September 17, 2010

River Run

It's the day before the big race! Here's the plan...

We are meeting just in front of Cafe Mela (click for location) on Wenatchee Avenue at 8:30am tomorrow morning. Come with your game face on, because I'd like to get a group photo! I'll also distribute t-shirts for those who haven't gotten theirs yet. From there we will walk together to the starting line. Our group is divided into the 5k and the 10k which both start together.

Hopefully, everyone has registered already. If not, you can register tonight from 5:00-7:00pm at Arlberg Sports (click for location) or tomorrow morning starting at 7:00am again, at Arlberg Sports.

I'm extremely excited for the race tomorrow! Thank you to all of my friends and family for being willing (and apparently excited too!) to join me on this little journey! Even my grandma is trying to find an electric scooter or wheelchair to join the walkers on the 5k. How fun is that!!

I'll see you tomorrow at 8:30am in front of Cafe Mela. If your feet are still dragging at that point, at least you can swing into the cafe for a quick shot of espresso. Hopefully my choice of meeting point wasn't lost on anyone :)

Thursday, September 16, 2010

Sorry I've been missing for the past few days. I went to sleep the other night and woke up fourteen hours later, only to be awake for three hours and then take another three hour nap.

I guess I'm exhausted.

I've got information for the race on Saturday, but I have to go. I'll post the information shortly!

I'm getting excited and nervous....

Tuesday, September 14, 2010

Fat Cat Of The Day

Everyone loves a fat cat. Danny and I were driving on the island last weekend and we saw the street sign below.

Anyone that has met my mom's cat Bentley has seen his amazing stature. He's a butterscotch colored butterball. He's about 30 lbs and oddly, he has the voice of a kitten. He's ADORABLE. He once caught a mouse by accidentally stepping on it.

This sign's for you mom!

Endless Human Kindness

I had an amazing email pop up in my inbox last night. It was from the Charity Outreach Coordinator at (the t-shirt company that we just ordered from). She noticed my t-shirt design and wanted to donate to my fund. Although she felt bad that it was "only" $20, I was completely blown away. Twenty dollars is still twenty dollars! I'm so honored and grateful that she initiated the donation.

I'm pretty stubborn and sometimes embarrassed about receiving help financially. My mom often reminds me of what I was like as child, constantly saying with a grin, "I do it mommy, I do it." Of course, I was usually wanting to help her with things like folding laundry, which she later had to do again the proper way (a two year old tends to do more of a roll or a wad than a fold).

Anyway (sorry, my middle name should be digress), I'm so blown away by the kindness of others. Every single day I have an amazing interaction with at least one person. An unforgettable moment that hangs with me. I have an amazing life, and because of this tumor I'm learning more and more about endless human graciousness. I'm learning how to follow the lead of those that I respect, trying to emulate their kindness and generosity of spirit.

Monday, September 13, 2010

Just Two Island Kids

Danny proposed this last weekend, while we were watching the sunset out on the westside. Two island kids.

My mom likes to joke about the fact that I met Danny when I was only eight months old. Danny likes to joke and say that he's been chasing me ever since.

I've always loved Danny. In fact I've never known anyone who didn't. He's the most kind, sincere, helpful, honest, supportive, thoughtful, intelligent, hilarious, hard working, witty, handsome man. I am the luckiest girl in the world!!

Kiwi Classic

This last weekend, in Friday Harbor, we attended the Phil Mckee fundraiser, The Kiwi Classic. He's an islander that was diagnosed with Non-Hodgkin's Lymphoma at the same time that I was diagnosed with my brain tumor. Throughout his treatment, I have been keeping up on his progress. It looks like he's done with his final chemo dose, and although there could still be some complications, he just might be able to rest for a little bit. I'm starting to feel relieved for him, although I know that things are never cut and dry.

A few months ago I had the chance to visit with Phil in depth. Although our diagnoses are so incredibly different, we still had a great conversation about life, attitude, strength, and of course we swapped hospital stories (both hilarious and tragic). Phil and his fiance Laura are absolutely genuine and incredibly kind. Both Phil and I agreed that we've got the strength to push through the adversity and that we have the support to help us when we need to borrow the strength from others.

I think about the two of them constantly, hoping that Phil's pain is diminishing, and that the hardest part is behind him. I'm grateful that they live in Friday Harbor with such an amazing support group. Islanders are like family.

Walking around the fundraiser, seeing the smiling faces, while friends hugged friends, it was an amazing sight. Yet again, I'm constantly reminded of the love floating around on this Earth. What a wonderful thing to witness. 

Sunday, September 12, 2010

Island Trip

Danny and I just got home from Friday Harbor, and I'm EXHAUSTED. Lots of photos and stories to share, but first, it's nap time.

Tuesday, September 7, 2010

Shirts Are Ordered! Yay!

UPDATE: All 19 shirts are ordered!

Danny and I just finished designing the race shirts. The cost is going to be about $25 each. It is kind of a lot of money but they are really fun, and I think we'll get a lot of use out of them. People don't have to buy the shirts to be a part of our team, the shirts are just icing on the cake if you're interested.

If anyone else wants to buy a shirt, let me know because I'm ordering them tomorrow afternoon (the 8th). So far we've got 14 on the roster (some doing the 10k, some doing the 5k, and others as cheerleaders). 

And yep, that IS my actual brain scan. Out of eight images on my first MRI CD, Danny and I picked out this one. Just wait until you see it up close. It's kind of creepy. The weirdest part is when the images hit through a slide show of the layers of my brain. It's almost like a flip book.

Monday, September 6, 2010

The Life You Love

Danny and I went for a hike yesterday. Although, truth be told, it was more like a walk than a hike (basically flat). It was nice walking through the trees, watching little chipmunks scurry across the path, and seeing the fat salmon hiding in the depths of the river. We even saw a little lizard. I was hoping to see a bear, but no such luck.

My hair is finally covering my scar. I have yet to take scissors to it, but I think it's about time. I'm starting to sport a mullet. I honestly never thought I'd see the day.

Sometimes you don't have to look very far to see life's signs. Literally.

Friday, September 3, 2010

Prolonging It

I know I sound crazy, with my change of diet and increased workouts, but I have to hit this brain tumor head-on (no pun intended).

So far, I've shared my medically diagnosed life expectancy to a few friends, but until now had yet to put it on the blog. Here's the story. At the University of Washington, my neurosurgeons, and my radiologist will not put a date on my death because they believe each case is individual. However, according to the John Hopkins Comprehensive Brain Tumor Center (which is the #1 neurology & neurosurgery center in the country) an adult with a stage II astrocytoma will live approximately 6-8 years from diagnosis. According to research at UCLA with stage II astrocytomas, they give me (since I'm in the 25-35 range) approximately 2563 days to live. The University of Maryland Greenebaum Cancer Research Center gives me about 7 years. The worst outlook I've found is from the World Health Organization which says that I have a median survival time of 4 years. Yikes. 

Now that I know my life expectancy is short, my job is to try to prolong it. And that is why I eat a billion vegetables a day, why juicing is my new hobby, why I have to get to the gym 5-6 times a week, and why I chose to make the best of this situation (because if I give up, I'll probably die sooner).

Wednesday, September 1, 2010

See Ya Muffin Top!

Hello world, I finally found a pair of jeans in my closet that doesn't cause a muffin top. Hallelujah!

Yep. This is epic. This is going to change my life! Seriously, it's impossible to be inspired when your waistband is cutting off your circulation.

Monday - running and legs
Tuesday - cross training and core
Wednesday - running and arms
Thursday - interval running and core
Friday - running
Saturday - cross training
Sunday - rest

I am a maniac. Soon I'll have more than one pair of pants that doesn't make me look like I have sausage legs. Things are looking good, and they're getting even brighter! One week down, and I can feel one of my abs. It's a brilliant start!
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