I'm so exhausted all of the time. I only have the energy to do a few important things during the day. I've fallen off the face of the earth for most of my long distance friends, and I apologize. I can't juggle things like I used to. I don't have the energy to be on the phone and discuss things. I can never catch up with my emails. I feel like I'm often floating around in a blurry haze. Even though I sleep on average 9 hours a night, I'm never caught up. I don't know if I'll ever be the same. I used to hit the gym at 5:00am, work all day, get home, talk on the phone with friends, cook, clean the house, etc. I feel crazy, unable to accomplish the things that I need to, and each day it gets worse, more and more things piling up. It's like a sensory overload, and my lack of ability to prioritize, focus, and find energy leads me to be exhausted, frustrated, and disappointed in myself. I don't know how to manage. I need three of me.
Off to bed.
11.30.2010
11.29.2010
11.28.2010
One Little Indiscretion
Tomorrow morning I start my next phase of speech therapy. I'll be traveling over to Seattle every Monday for the next six weeks. Fortunately, Danny has a 4-wheel drive vehicle that can easily conquer the passes.
Hopefully my full stomach will subside by morning. I'm in a food haze. Like most, I ate too much and I'm still hurting. Although my family had an extremely healthy organic feast, I still ate things that I don't usually consume. I had been really good about avoiding sugar (other than whole fruits), but my mom made an apple pie with raisins and an orange glaze that I couldn't resist. It was unbelievable. I even went back for seconds on Friday. Here's the problem, after I relaxed my food guidelines, I ended up eating all kinds of other things over the weekend. Food is a slippery slope, and one little indiscretion can snowball things pretty quickly.
At least tomorrow is a new day. Each day is an opportunity to start fresh and get back on track.
Hopefully my full stomach will subside by morning. I'm in a food haze. Like most, I ate too much and I'm still hurting. Although my family had an extremely healthy organic feast, I still ate things that I don't usually consume. I had been really good about avoiding sugar (other than whole fruits), but my mom made an apple pie with raisins and an orange glaze that I couldn't resist. It was unbelievable. I even went back for seconds on Friday. Here's the problem, after I relaxed my food guidelines, I ended up eating all kinds of other things over the weekend. Food is a slippery slope, and one little indiscretion can snowball things pretty quickly.
At least tomorrow is a new day. Each day is an opportunity to start fresh and get back on track.
11.24.2010
Relinquishing Control
Every few weeks I get nervous about the tumor. I try not to let it dominate my life, but sometimes that's easier said than done. I try not to stress too much about my heath, and the future, but then I find that I'm stressing even more by telling myself NOT to stress. It's a vicious, counter productive cycle.
I thought I'd be further along in my recovery from the surgeries. Again, I'm having to tell myself to slow down, rest more, and take joy in the little things. I can get caught up in the future, borrowing trouble.
I saw a woman at the gym today who I believe is undergoing chemo. She was completely bald, no eye lashes or eye brows. I smiled at her, and she smiled back, knowing that she probably has no idea that I've gone through some tough medical stuff too. I thought to myself how lucky I am. I'm healthy, I have my hair, I can exercise, I'm reading more and more, I'm really lucky to have successfully passed my past two MRI's. I have everything in the world to be grateful for, and I'm just going to keep focusing on that!
Each time I start to worry I'm going to think about something that I'm grateful for. Just now, I tried this little trick again, and my blood pressure dropped. My body relaxed and I inadvertently let out a deep sigh. Just like Jessica Abu Dhabi mentioned the other day, "Surrender to things." I need to relinquish control, and just be grateful. I don't think it'll be too hard to do. Just like thinking positive, you just have to keep on it. :)
I thought I'd be further along in my recovery from the surgeries. Again, I'm having to tell myself to slow down, rest more, and take joy in the little things. I can get caught up in the future, borrowing trouble.
I saw a woman at the gym today who I believe is undergoing chemo. She was completely bald, no eye lashes or eye brows. I smiled at her, and she smiled back, knowing that she probably has no idea that I've gone through some tough medical stuff too. I thought to myself how lucky I am. I'm healthy, I have my hair, I can exercise, I'm reading more and more, I'm really lucky to have successfully passed my past two MRI's. I have everything in the world to be grateful for, and I'm just going to keep focusing on that!
Each time I start to worry I'm going to think about something that I'm grateful for. Just now, I tried this little trick again, and my blood pressure dropped. My body relaxed and I inadvertently let out a deep sigh. Just like Jessica Abu Dhabi mentioned the other day, "Surrender to things." I need to relinquish control, and just be grateful. I don't think it'll be too hard to do. Just like thinking positive, you just have to keep on it. :)
11.23.2010
Maitake Tumor Soup
Sometime around the stage when I realized red licorice was unhealthy (it's a processed sugar, and often contains high fructose corn syrup which has been shown to proliferate tumor and cancer cells), I started to care more and more about what I'm ingesting. I started talking to other people about nutrition. As things tend to work in mysterious ways, I saw an interesting book about healthy foods in Susea's kitchen (one of my mom's close friends, who has helped raise me as if I was her own daughter - that's the thing about Friday Harbor, you have love and kindness from all over the island. You're raised by a village).
My meals are no longer just based on flavor. I'm going for nutrition to sustain my body. Some people would like my meals, but most would probably yearn for a burger and fries, a steak...maybe even meatloaf. I've delved into vegetables in a serious way, with an emphasis on mushrooms. Apparently, they're known to safely eliminate toxins, while also boosting the immune system.
I don't know if my diet will change my outcome, but I hope that it does. From the book mentioned above, we've learned that Maitke mushrooms have been linked to smaller tumors in rats. Mushrooms in general, are known to pull out toxins. Ever since I read that piece of information, and dad sent me a package of maitake mushrooms, I've been integrating them into my diet.
Anyway, here's what Danny and I had for dinner last night (which he then supplemented with a homemade hamburger - he's a meat an potato kind of guy).
My Ingredients - Give Or Take:
1 organic medium onion (chopped)
6 organic garlic cloves (chopped)
1 1/5 cup of organic asparagus (chopped)
4 cups of dried mushrooms (cut up with poultry scissors after soaked)
*I choose Maitake mushrooms which you have to soak in hot water for 5 minutes - after 5 minutes it's more like 2 cups condensed
1 cup of the mushroom water/juice from the soaking
1 1/5 cup of organic vegetarian broth
1 tablespoon of olive oil
1 tablespoon of fresh ground pepper
A pinch of salt
*Garnish with chopped purple cabbage
*Garnish with chopped kale
Instructions:
Heat the pan on medium, with a table spoon of olive oil tossed in the base. Once the olive oil has spread across the pan, toss the onion and garlic in - stirring regularly. Cook and stir for five-ish minutes, until the vegetables are opaque, but not browned.
After several minutes toss in the asparagus, and the mushrooms. Cook for two minutes. Add in the mushroom juice, vegetable broth and fresh cracked pepper. Stir and bring it to a boil. Cover, and simmer for 45 minutes.
Pull the pot to a cool burner and let it sit for 15 minutes, uncovered.
Ladle batches into a food processor, and let each batch process for 10 minutes each. Once all batches are done, put them back into a pot and re-heat them gently. Once they're warm again, ladle them into bowls, and garnish them with kale and purple cabbage.
I wish I could say that the whole thing goes quickly, and although the original recipe states 60 minutes, it took me well over two hours. It's worth it though. I'm just excited that I can follow instructions, and make more challenging meals. I didn't even make any mistakes! I've learned a lot of helpful tricks to make things more successful. For example, pulling out all of the ingredients and putting them on the counter. Double checking the list and chopping everything before I start cooking, has saved me too. It's nice to see myself progress in the kitchen. It's fun to cook.
It's no pizza, and it's definitely no burger, but it's unbelievably healthy and worth it. Either way, I'm thrilled that I can take things step-by-step. I'm working day by day to get things back into working condition. It's empowering!
I'm not saying that I don't have moments of weakness, when I randomly meet a cookie, or a slice of salami and it finds it's way into my mouth - but 80 to 90 percent of my diet consists of healthy dishes like the one I mentioned above.
My life is not what I thought it would be. I never expected to have a brain tumor - heck, I'd never even broken a bone, but this is my life now. I have to be much more careful than most.
The worst thing I could ever do, would be to not take this diagnosis seriously. I don't want to deteriorate. As this brain tumor progresses, it's expected that my abilities will continue to wane, and I will need more and more help physically and mentally. I'm scared for that. I know that those doctors aren't trying to scare me, it's just life, living with a malignant brain tumor. I just saw it on Andrea's blog. Although she was dealing with leukemia, it's just as real to me, as I assume it was for her. I have a few years where I'm probably safe, I don't know how many, and I'm trying to elongate them. I want to be with my family and friends as long as I can. I don't want to fail them. I choose to make the effort.
Who knows if it'll work, eating healthy, but it's worth a shot.
11.22.2010
Winter's Here!
Danny, Emma and I just went for a lovely evening walk. It's supposed to be an insanely cold and snowy winter, and we're very excited! For example, just now when we went for the little evening stroll, it was 16 degrees and dropping quickly. The low for tonight is -2 and the high for tomorrow is 15 degrees.
When it started snowing a few days ago I had a bit of anxiety. I was excited for the change of season, but in the same moment I flashed back to the last time I was in the snow. It was last April. The 9th, a Friday, and Danny and I were snowshoeing around the outskirts of Mission Ridge. During the middle of the outing I had a massive headache, which led to a doctor's appointment the following Monday, and the diagnosis on Tuesday.
Life was pretty different then, pretty carefree. I didn't have to worry too much about my diet, my limitations, my stress levels, a need for rest, my future or anything for that matter. If you would have asked me at the time though, I probably would have rattled off a list of things that I was worried about, and stressing over. I remember looking at the photos from that day and I couldn't stand how I looked in the pictures. I didn't like my hair. Now, I laugh at that and think about how lucky I was, and I didn't even know it. Man, life can sure change in an instant.
I think that most people are grateful all year long, but right now, this week, we have time to truly celebrate giving thanks. I'm thankful for my life, and my health. I'm thankful to all of my friends and family. I'm grateful for the wonderful man in my life, who has been so patient throughout this insane life that we've come to know and navigate. I'm grateful for all of the people that I see being kind to others, especially when they don't even know people are watching. I'm grateful for miracles, big and small. I'm just so grateful.
If you look closely, you can see my eyes.
Danny bundled me up, nice and cozy!
When it started snowing a few days ago I had a bit of anxiety. I was excited for the change of season, but in the same moment I flashed back to the last time I was in the snow. It was last April. The 9th, a Friday, and Danny and I were snowshoeing around the outskirts of Mission Ridge. During the middle of the outing I had a massive headache, which led to a doctor's appointment the following Monday, and the diagnosis on Tuesday.
Life was pretty different then, pretty carefree. I didn't have to worry too much about my diet, my limitations, my stress levels, a need for rest, my future or anything for that matter. If you would have asked me at the time though, I probably would have rattled off a list of things that I was worried about, and stressing over. I remember looking at the photos from that day and I couldn't stand how I looked in the pictures. I didn't like my hair. Now, I laugh at that and think about how lucky I was, and I didn't even know it. Man, life can sure change in an instant.
I think that most people are grateful all year long, but right now, this week, we have time to truly celebrate giving thanks. I'm thankful for my life, and my health. I'm thankful to all of my friends and family. I'm grateful for the wonderful man in my life, who has been so patient throughout this insane life that we've come to know and navigate. I'm grateful for all of the people that I see being kind to others, especially when they don't even know people are watching. I'm grateful for miracles, big and small. I'm just so grateful.
11.20.2010
Andrea Luthringer Martin
Just a moment ago, I sat down on the couch with my TCU Magazine. It comes four times a year, and I love perusing through it. Everytime, before I even read any articles I flip to the back to see the Alum News section. It's where you find all the fun photos of weddings, babies and alumni gatherings. Today, at the end of the section Frogs We Will Miss, I saw Andrea Luthringer Martin's name. She was in my pledge class in Pi Phi. It was a class of less than 50. I feel like such an idiot that I didn't know that things were so bad. I've been so out of the loop for so many months.
There's a blog that I found, that was written by her mother, father, mother-in-law, and father-in-law. I started reading it, and I just continued to go back further, and further, until I couldn't read it any longer. I feel sick to my stomach. The account of her story was so honest, and so heartbreaking. Here I was, soon to go into surgery, and she lost her battle. Just as her fight was ending, mine was beginning. I wish I could have spoken to her.
If you want to check out her blog, please do. I don't think anyone's managing it anymore, but it's a story that should be shared. If you get the chance to read it, please think of her family, and her husband especially during these holidays that are rapidly approaching. I can't imagine how hard it would be to be in their position, missing Andrea so much.
She was an extremely kind, intelligent, compassion person and I'm better having known her in the short time that I did. Life can be short, and I have to cherish every moment of it. Not just for me or my friends and family, but also in honor of people like Andrea. It's important that we don't take our health and life for granted. Our lives and our health are a gift.
There's a blog that I found, that was written by her mother, father, mother-in-law, and father-in-law. I started reading it, and I just continued to go back further, and further, until I couldn't read it any longer. I feel sick to my stomach. The account of her story was so honest, and so heartbreaking. Here I was, soon to go into surgery, and she lost her battle. Just as her fight was ending, mine was beginning. I wish I could have spoken to her.
If you want to check out her blog, please do. I don't think anyone's managing it anymore, but it's a story that should be shared. If you get the chance to read it, please think of her family, and her husband especially during these holidays that are rapidly approaching. I can't imagine how hard it would be to be in their position, missing Andrea so much.
She was an extremely kind, intelligent, compassion person and I'm better having known her in the short time that I did. Life can be short, and I have to cherish every moment of it. Not just for me or my friends and family, but also in honor of people like Andrea. It's important that we don't take our health and life for granted. Our lives and our health are a gift.
11.19.2010
The Little Voice
I've been trying to take it easy lately, focusing on relaxing. I used to curl up with a good book, but these days I'm unable comprehend most fiction. You know the little voice that reads to you while you read a book? That character that lifts up from the pages and talks to your mind? I don't have that. I'm able to read non-fiction, factual upfront information, but the fun stuff escapes me.
I'm missing the voice inflection, the hidden meaning, the inferences, and ironies. I do really well in conversations because I can see facial expressions, and hear the tone of voice. If I'm in a conversation I can ask questions and clarify. With a book you don't have that. Most of the fun in reading non-fiction, is the twists and turns, and sadly, I tend to miss all that. It takes the fun right out of reading. That is, unless you have a friend like Jessaca. She, without request, started voice recording chapters from a book from our book club. That's how sweet she is. I have a copy of the book, and I listen to her recording at the same time. It is HILARIOUS. I hear the voice inflection, the tempo, and sometimes she'll even pause and say things like, "What's a ____?....it must be an animal or something" - which makes me laugh out loud ridiculously. Now, I feel like I'm reading just as I had been before, only it's better. It's like reading a book with a friend, or having a conversation. When Jess reads the book to me, I hear her voice on the tape and I often realize that the written word is being said in humor. I take things literally, so when she starts laughing I realize that it's sarcasm, or just plain humor. If I read the same thing aloud, I come to a completely different conclusion than is intended. It's pretty complicated.
I started explaining it to my brother the other day, my inability to understand novels and such. My brother is a football lover to the core. If you flip over his arm you might see laces. It's in his flesh. He adores (my word, not his) it. I explained it to him like this: One day you look at a game on TV and you know it's football. However, you can't understand why they're in different formations, or why there's a yellow flag. You can't figure out how long the game goes, or why they're in huddles on the sideline. You don't understand most of the details, yet, at the same time you know that you USED to know every detail. That analogy works in my daily life in many areas.
It's isolating. I look fine, I converse well, I seem great, but the truth is swimming around in my mind. It's scary. I also explained my struggles to my mom and dad recently. I told them that I feel like someone two and a half times my age, who's experiencing memory loss, and inability to process information like they used to. Almost like I have Alzheimer's or something. The only problem is that I'm only 30 years old.
I never thought I would NOT be capable. I honestly thought I'm not a doctor because I can't stand blood, fluids, or tissue in general. It never occurred to me the fact that I'm not a doctor isn't because I couldn't do it, I just didn't want to. For the record, it would probably take me a lot longer than other doctors to complete the required schooling, kind of like the story of Rudy, the college football player. That could be said for other careers/interests too. I've always felt that hard work and perseverance would take me wherever I needed/wanted to go in life. Now, I'm so confused with big ideas, concepts, and problem solving, that I don't even think to solve them. Somehow, I just don't get things. It's impossible to explain. When I DO try to fix things, I can't figure out the solution. Within several minutes I feel like my head is going to explode, and my whole body tenses. It's frustrating, not being able to take care of the things that you used to easily be able to do.
With all of that being said (I've been veraciously unloading today), I am so grateful for having this outlet. I appreciate all of the support, and kindness of everyone. I'm incredibly fortunate that you read this blog, I'm honored that you take the time. I'm nothing without my friends and family, you guys lift me up and always keep me laughing. Even though I'm struggling with the reality of this tumor, I'm still happy because I have the love and kindness from all of you in my heart. It's an insanely powerful feeling. I'm so lucky. Thank you.
With love, good night.
I'm missing the voice inflection, the hidden meaning, the inferences, and ironies. I do really well in conversations because I can see facial expressions, and hear the tone of voice. If I'm in a conversation I can ask questions and clarify. With a book you don't have that. Most of the fun in reading non-fiction, is the twists and turns, and sadly, I tend to miss all that. It takes the fun right out of reading. That is, unless you have a friend like Jessaca. She, without request, started voice recording chapters from a book from our book club. That's how sweet she is. I have a copy of the book, and I listen to her recording at the same time. It is HILARIOUS. I hear the voice inflection, the tempo, and sometimes she'll even pause and say things like, "What's a ____?....it must be an animal or something" - which makes me laugh out loud ridiculously. Now, I feel like I'm reading just as I had been before, only it's better. It's like reading a book with a friend, or having a conversation. When Jess reads the book to me, I hear her voice on the tape and I often realize that the written word is being said in humor. I take things literally, so when she starts laughing I realize that it's sarcasm, or just plain humor. If I read the same thing aloud, I come to a completely different conclusion than is intended. It's pretty complicated.
I started explaining it to my brother the other day, my inability to understand novels and such. My brother is a football lover to the core. If you flip over his arm you might see laces. It's in his flesh. He adores (my word, not his) it. I explained it to him like this: One day you look at a game on TV and you know it's football. However, you can't understand why they're in different formations, or why there's a yellow flag. You can't figure out how long the game goes, or why they're in huddles on the sideline. You don't understand most of the details, yet, at the same time you know that you USED to know every detail. That analogy works in my daily life in many areas.
It's isolating. I look fine, I converse well, I seem great, but the truth is swimming around in my mind. It's scary. I also explained my struggles to my mom and dad recently. I told them that I feel like someone two and a half times my age, who's experiencing memory loss, and inability to process information like they used to. Almost like I have Alzheimer's or something. The only problem is that I'm only 30 years old.
I never thought I would NOT be capable. I honestly thought I'm not a doctor because I can't stand blood, fluids, or tissue in general. It never occurred to me the fact that I'm not a doctor isn't because I couldn't do it, I just didn't want to. For the record, it would probably take me a lot longer than other doctors to complete the required schooling, kind of like the story of Rudy, the college football player. That could be said for other careers/interests too. I've always felt that hard work and perseverance would take me wherever I needed/wanted to go in life. Now, I'm so confused with big ideas, concepts, and problem solving, that I don't even think to solve them. Somehow, I just don't get things. It's impossible to explain. When I DO try to fix things, I can't figure out the solution. Within several minutes I feel like my head is going to explode, and my whole body tenses. It's frustrating, not being able to take care of the things that you used to easily be able to do.
With all of that being said (I've been veraciously unloading today), I am so grateful for having this outlet. I appreciate all of the support, and kindness of everyone. I'm incredibly fortunate that you read this blog, I'm honored that you take the time. I'm nothing without my friends and family, you guys lift me up and always keep me laughing. Even though I'm struggling with the reality of this tumor, I'm still happy because I have the love and kindness from all of you in my heart. It's an insanely powerful feeling. I'm so lucky. Thank you.
With love, good night.
11.17.2010
Key Ingredients
My first successful dinner made from scratch (since before the surgeries). Mahi Mahi on a bed of red quinoa, Peruvian beans (used my pressure cooker - thank you Ash!), shredded kale with garlic, mushrooms with onions, purple cabbage, cherry tomatoes (I can't believe that they're still hanging on in my garden), and green chillies.
For the first time while cooking, I didn't cut myself, burn anything, or forget any key ingredients.
Over the past several months my cooking has been pretty hit or miss. I often resort to steamed broccoli, or pan seared veggies as an entire meal. Sometimes, when I'm full of energy, I'll chop up a bunch of veggies into a quinoa salad with a dab of tahini, but that's about as complicated as I get.
Not the other night though. I'm sure it was nice for Danny to be treated. For months now, he's been doing the majority of the cooking. Although, as I'm looking back at the pictures, I basically did the same thing that I usually do except I separated them out into bowls. Oh well. Like I said, I didn't hurt myself, burn anything, or forget any key ingredients. And we ate at the dinner table.
Success!
11.15.2010
The Man Handbook
Recently, I went back to work full time. Well, kind of. It only lasted a week. I've had it in my head that as soon as I get back to normal life (pre-surgery life that is) everything will be alright. As if the tumor doesn't exist; that everything has just been a crazy unimaginable dream.
The truth is that it's not a dream. I do have limits. I had to cut back my hours because I was so exhausted I couldn't function properly. After leaving work on the second day of going full time I took a nap and slept for five hours. That was a bit of a wake up call. At the most recent appointment with my speech therapist I mentioned my new full time schedule and my exhaustion. She looked at me wide eyed and smiled. She told me that almost all of the patients who've had my type of surgeries and head trauma are not back to full time work after six months. When she told me that, I felt a lot better. It's hard to know what you're supposed to be capable of. I don't know what the guidelines are, other than listening to my body and even then I sometimes get mixed signals.
I feel like my brain is constantly fuzzy. It's the difference between running in water or running on land. I feel like everyone else is jogging at the gym, and I'm slugging through waist deep waves. My mind is so exhausted. I have to do double or triple the amount of mental work, in order to get the same result.
There's so many things that I want to do, but I don't have the cognitive ability. Sometimes, I feel like I'm floating, and even though I might be in a crowded room my mind can be completely vacant. I get overloaded and my whole brain shuts down. It's like I'm taking a page out of The Man Handbook. The chapter titled, "What to do when your wife/girlfriend/mother/ie any woman asks you what you're thinking." I guess, I'm now more manly. I can honestly say that 40% of the day, my mind is solidly blank. That is something that I've never experienced before.
I remember the doctors telling me that I will continue to physically heal for over a year. They also said that as the healing continues it's a bell curve. I'm now riding the back side, headed down. It scares me to think that I will probably never be the same as I was before the surgeries. That's life I guess. Constantly changing. I've never been that much of a scholar, but I don't like having my options limited. I hope that in six more months, I'll be able to look back at this post and smile, wishing I could still enjoy a blank mind from time to time. Who knows, maybe the blankness is a good thing, like meditating.
By the way, here's a photo of my new hair. It's fun that I don't have to do anything when I get out of the shower, no comb, no products, and no tools. It's just me and my hair. Pretty simple. One note, this photo was taken at a cocktail party and I have a strapless dress on. Sorry it looks kind of questionable.
The truth is that it's not a dream. I do have limits. I had to cut back my hours because I was so exhausted I couldn't function properly. After leaving work on the second day of going full time I took a nap and slept for five hours. That was a bit of a wake up call. At the most recent appointment with my speech therapist I mentioned my new full time schedule and my exhaustion. She looked at me wide eyed and smiled. She told me that almost all of the patients who've had my type of surgeries and head trauma are not back to full time work after six months. When she told me that, I felt a lot better. It's hard to know what you're supposed to be capable of. I don't know what the guidelines are, other than listening to my body and even then I sometimes get mixed signals.
I feel like my brain is constantly fuzzy. It's the difference between running in water or running on land. I feel like everyone else is jogging at the gym, and I'm slugging through waist deep waves. My mind is so exhausted. I have to do double or triple the amount of mental work, in order to get the same result.
There's so many things that I want to do, but I don't have the cognitive ability. Sometimes, I feel like I'm floating, and even though I might be in a crowded room my mind can be completely vacant. I get overloaded and my whole brain shuts down. It's like I'm taking a page out of The Man Handbook. The chapter titled, "What to do when your wife/girlfriend/mother/ie any woman asks you what you're thinking." I guess, I'm now more manly. I can honestly say that 40% of the day, my mind is solidly blank. That is something that I've never experienced before.
I remember the doctors telling me that I will continue to physically heal for over a year. They also said that as the healing continues it's a bell curve. I'm now riding the back side, headed down. It scares me to think that I will probably never be the same as I was before the surgeries. That's life I guess. Constantly changing. I've never been that much of a scholar, but I don't like having my options limited. I hope that in six more months, I'll be able to look back at this post and smile, wishing I could still enjoy a blank mind from time to time. Who knows, maybe the blankness is a good thing, like meditating.
By the way, here's a photo of my new hair. It's fun that I don't have to do anything when I get out of the shower, no comb, no products, and no tools. It's just me and my hair. Pretty simple. One note, this photo was taken at a cocktail party and I have a strapless dress on. Sorry it looks kind of questionable.
11.11.2010
Style Points
Last night was my weekly soccer match. After discussing the ball-to-the-head incident with my doctors, I decided not to play soccer for now. I'm not saying that I'll never play again (I'm too stubborn and competitive for that), but for the first year after the surgeries I'm just going to try and take it easy. Since my skull, and tissues are still fusing, I figure I might as well avoid hard impact. That sounds like a no brainer (no pun intended), but prior to the diagnosis I was a go-big-or-go-home kind of girl.
Since I can't kick butt on the field, I decided to earn style points. It all started yesterday when Danny found my old high school cheerleading skirt (which actually still fits...a little snug, but it fits). I tossed on my jersey, my soccer socks, and painted black lines under my eyes. I'll do anything for a laugh.
It was our third game, and we have yet to win, but we're not that invested in the score. We'd love to win, don't get me wrong, but it's the meeting after the game, at a local pub, that we're truly after. There's nothing better than a girls night.
Here's a goofy team photo to make you smile. I'm the odd duck on the left. Hard to miss the skirt. PS You can kind of see my new hair cut which I have yet to capture photogenically. Soon, I promise.
Since I can't kick butt on the field, I decided to earn style points. It all started yesterday when Danny found my old high school cheerleading skirt (which actually still fits...a little snug, but it fits). I tossed on my jersey, my soccer socks, and painted black lines under my eyes. I'll do anything for a laugh.
It was our third game, and we have yet to win, but we're not that invested in the score. We'd love to win, don't get me wrong, but it's the meeting after the game, at a local pub, that we're truly after. There's nothing better than a girls night.
Here's a goofy team photo to make you smile. I'm the odd duck on the left. Hard to miss the skirt. PS You can kind of see my new hair cut which I have yet to capture photogenically. Soon, I promise.
11.10.2010
The Forgotten Bunch
Yesterday, my mom shared an amazing story from The Wall Street Journal. It was about a guy my age who had a brain tumor resection. After the surgery he was completely blind in both eyes (they didn't say whether the blindness was due to an "oops" during surgery - one of those caveats that doctors give but don't expect to happen under their hands, or if it was expected).
Even though he was blind in both eyes, he was able to do a 7 day group kayak trip along the Colorado river. It wasn't a float, it wasn't easy, they started out with the basics and by the end of the week they had individually conquered class III rapids on river kayaks. It was an amazing story. The best part (in my opinion) was that the adventure was free. Here's a quote from the First Descents website, "They were there to prove themselves and to prove a point: that cancer, no matter how aggressive, dormant, advanced, or invasive, would never be stronger than they were."
What a beautiful program. What a wonderful idea.
There were a lot of points in the article, and an unbelievable amount of links. I guess, what surprised me was that young adults are forgotten when thinking of cancer. Here's an excerpt from the article; "The grim statistics have become a rallying point for activist groups: Some 72,000 Americans aged 15 to 39 are diagnosed with cancer every year, and more than 10,000 die. They make up less than 10% of all cancer patients, but survival rates for teens and young adults have barely budged since 1975, while those for children and older people have made dramatic gains."
I guess my point is that there's definitely a need for research, specifically in the treatment area regarding young adults and cancer. We might be the forgotten bunch, just like the middle child.
Even though he was blind in both eyes, he was able to do a 7 day group kayak trip along the Colorado river. It wasn't a float, it wasn't easy, they started out with the basics and by the end of the week they had individually conquered class III rapids on river kayaks. It was an amazing story. The best part (in my opinion) was that the adventure was free. Here's a quote from the First Descents website, "They were there to prove themselves and to prove a point: that cancer, no matter how aggressive, dormant, advanced, or invasive, would never be stronger than they were."
What a beautiful program. What a wonderful idea.
There were a lot of points in the article, and an unbelievable amount of links. I guess, what surprised me was that young adults are forgotten when thinking of cancer. Here's an excerpt from the article; "The grim statistics have become a rallying point for activist groups: Some 72,000 Americans aged 15 to 39 are diagnosed with cancer every year, and more than 10,000 die. They make up less than 10% of all cancer patients, but survival rates for teens and young adults have barely budged since 1975, while those for children and older people have made dramatic gains."
I guess my point is that there's definitely a need for research, specifically in the treatment area regarding young adults and cancer. We might be the forgotten bunch, just like the middle child.
11.08.2010
Victorious Secret
Above is a photo of my soccer team Victorious Secret, which started up recently. During last week's game I took a serious hit to my kisser. Instantly, my eyes started watering and I walked toward the edge of the arena. The blow was pretty hard, and I was incredibly shaken up. It wasn't the pain, although it did happen to split the inside of my lip, that scared me. It was the fear of the possible damage to my brain.
Although, I'm recovering pretty quickly from the blow, I still have a headache which scares me. Since the surgeries, I've been reluctant to give up the things that I love. Probably since I've been told time and again that quality of life is the most important thing; which I took to mean, do what makes you happy. I guess, now, after getting blasted in the face, I'm starting to wonder if maybe my quality of life isn't just about the here and now.
I don't want to rattle my brain that has so lovingly carried me out of the abyss. There are always things that we desire that aren't good for us, and for me, that just might be soccer.
According to my doctors, the only option would be to wear a helmet, which is exactly what my parents urged me to do in the first place. The style of helmet would be a soft helmet that wraps around the head and has a guard along the face. If that's not embarrassing I don't know what is. I guess the joke is on me. I don't remember our last season of soccer to be such a contact sport, and I wasn't expecting it to be so aggressive - at least not at this level of play. Unfortunately, I think in an adult women's league we're probably even more aggressive than most professionals, but without the insane soccer skills. After my doctors told me that a helmet is necessary, several of the girls from the team offered to wear them with me (ski, and bike helmets that they already have) but apparently hard shell helmets are against league regulations. They tried to join me and that's all that matters. I've got a pretty great group of friends!
With that blow to the face, my body, and the world, is reminding me that I'm only six months out of surgery and that I need to tread lightly.
11.06.2010
My Challenge
Well. Unfortunately, according to the tests I'm not a genius. Danny was thrilled by the results, but I was pretty disappointed.
I'm glad to report that I show not that many neurological deficits, any more, I'm getting better even though they said I wouldn't. However I have "weaknesses" (his word) in all areas. The doctor believes that I still have some recovering to do, albeit little. He does not believe that I will reach my previous mental abilities that I had before the surgeries.
Everyone fears the statement, "She has a great personality," when referring to a blind date. Which is how I felt when the doctor said that I'm very compassionate, and personable, and will fare just fine in society. When discussing my future in the academic world, he was on the fence regarding my ability to succeed. Basically, he doesn't believe that I will have the attention, retention, or energy to ever earn another degree.
I know it sounds crazy, but I can understand his reasoning. I am still exhausted and have to take 2-5 hour naps after work. I'm still struggling with higher level thinking. Things are definitely tough, but at the same time it has only been 6 months and to write me off at this point is ridiculous. I'm sure he's just going off of statistics, and personal accounts, but each individual is different and I'm pretty damn stubborn. Just because I can't use more than two syllable words in my speech, or pronunciate words I should know, doesn't mean I'm stupid. That it isn't in there.
I guess I thought I'd do something challenging and impactful with my life, and I always thought it would be achieved through the academic world. Even though I've never been a genius, whatever lack of knowledge I had I knew I could compensate with hard work and perseverance. Unfortunately, I can no longer power through tasks, both physically and mentally. I get exhausted and my mind shuts down completely. My life has immeasurably changed. My mechanics have shifted, and I'm learning to adjust my system. Now, all I have is my story. Maybe that's my challenge, sharing it. Maybe if he saw my blog he'd see that I'm smarter than he thinks. His test was by hand and I still can't use a ben or pencil well or write stuff, my hand is funky. But I type. I can do that.
I'm glad to report that I show not that many neurological deficits, any more, I'm getting better even though they said I wouldn't. However I have "weaknesses" (his word) in all areas. The doctor believes that I still have some recovering to do, albeit little. He does not believe that I will reach my previous mental abilities that I had before the surgeries.
Everyone fears the statement, "She has a great personality," when referring to a blind date. Which is how I felt when the doctor said that I'm very compassionate, and personable, and will fare just fine in society. When discussing my future in the academic world, he was on the fence regarding my ability to succeed. Basically, he doesn't believe that I will have the attention, retention, or energy to ever earn another degree.
I know it sounds crazy, but I can understand his reasoning. I am still exhausted and have to take 2-5 hour naps after work. I'm still struggling with higher level thinking. Things are definitely tough, but at the same time it has only been 6 months and to write me off at this point is ridiculous. I'm sure he's just going off of statistics, and personal accounts, but each individual is different and I'm pretty damn stubborn. Just because I can't use more than two syllable words in my speech, or pronunciate words I should know, doesn't mean I'm stupid. That it isn't in there.
I guess I thought I'd do something challenging and impactful with my life, and I always thought it would be achieved through the academic world. Even though I've never been a genius, whatever lack of knowledge I had I knew I could compensate with hard work and perseverance. Unfortunately, I can no longer power through tasks, both physically and mentally. I get exhausted and my mind shuts down completely. My life has immeasurably changed. My mechanics have shifted, and I'm learning to adjust my system. Now, all I have is my story. Maybe that's my challenge, sharing it. Maybe if he saw my blog he'd see that I'm smarter than he thinks. His test was by hand and I still can't use a ben or pencil well or write stuff, my hand is funky. But I type. I can do that.
11.03.2010
Neuro Testing Results
Tomorrow I get the results of the neuro testing from last month. Woo hoo! The testing was pretty interesting, fun even, although at the time I was a little stressed about the MRI. The first day of testing began the day before the MRI, which wasn't ideal timing but that's the soonest they could fit me in.
The testing had the basics that you'd expect, timed math, memory cards, definitions, spelling, reading comprehension, pronunciation, and things of that nature. It also had some pretty interesting segments that included blindfolded three dimensional puzzles. They had me do the exact same puzzle (always blindfolded) starting with only the use of my right hand, then again with my left hand, and finally I was able to use both hands.
There were drawing tests where I had ten seconds to memorize an image and then I was expected to draw it. As the time went on, the pictures became more and more difficult. Things were color coded, and things got hairy from there. It was a whirlwind of testing. Anyway, the testing was interesting, and the scoring will be incredibly interesting to hear about. I'm excited!
The testing had the basics that you'd expect, timed math, memory cards, definitions, spelling, reading comprehension, pronunciation, and things of that nature. It also had some pretty interesting segments that included blindfolded three dimensional puzzles. They had me do the exact same puzzle (always blindfolded) starting with only the use of my right hand, then again with my left hand, and finally I was able to use both hands.
There were drawing tests where I had ten seconds to memorize an image and then I was expected to draw it. As the time went on, the pictures became more and more difficult. Things were color coded, and things got hairy from there. It was a whirlwind of testing. Anyway, the testing was interesting, and the scoring will be incredibly interesting to hear about. I'm excited!
11.02.2010
11.01.2010
Start With A Plan
I'm not sleeping well, and it's causing my wires to cross and fizzle. I'm trying to focus on the moment, but I keep worrying about the future. I've always been this way, borrowing trouble. I'm a planner by nature, and now I need to adjust my whole life. I had certain goals and expectations, and unfortunately I need to adjust them.
Prior to this diagnosis I was looking into attaining another degree. I've always enjoyed studying, learning, and challenging myself. Now, I'm just trying to read and comprehend. My goals are smaller, and although I'm really grateful to see improvement, I'm still scared about what this means for the future. Even if I could master my reading comprehension, I don't think I could justify taking on more college loans when I know I am a medical liability. In life, my calendar will be dictated by my MRIs and doctor's appointments and I'm not sure if I'll ever get back to school again. It doesn't look like further education is the best option.
With that, I'm worried about my potential. I don't know if I'm going to be much of an earner - which unfortunately, is exactly what I need to be. I'm in a position where I can never be without medical insurance, and already my premiums are through the roof. I can manage things, but again, I'm having to adjust my expectations.
I keep trying to think of my strengths so that I can capitalize on them, but maybe it's still too soon for me to be this serious. I'm not the best at objectively analyzing. I know I should calm down and focus on the daily goals, but it's hard to have "real life" looming over me. I want to think that things will just work out, and I'm sure to a certain extent that is true, but I also have always felt that in order to reach your goals you have to start with a plan.
Prior to this diagnosis I was looking into attaining another degree. I've always enjoyed studying, learning, and challenging myself. Now, I'm just trying to read and comprehend. My goals are smaller, and although I'm really grateful to see improvement, I'm still scared about what this means for the future. Even if I could master my reading comprehension, I don't think I could justify taking on more college loans when I know I am a medical liability. In life, my calendar will be dictated by my MRIs and doctor's appointments and I'm not sure if I'll ever get back to school again. It doesn't look like further education is the best option.
With that, I'm worried about my potential. I don't know if I'm going to be much of an earner - which unfortunately, is exactly what I need to be. I'm in a position where I can never be without medical insurance, and already my premiums are through the roof. I can manage things, but again, I'm having to adjust my expectations.
I keep trying to think of my strengths so that I can capitalize on them, but maybe it's still too soon for me to be this serious. I'm not the best at objectively analyzing. I know I should calm down and focus on the daily goals, but it's hard to have "real life" looming over me. I want to think that things will just work out, and I'm sure to a certain extent that is true, but I also have always felt that in order to reach your goals you have to start with a plan.
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