Friday, December 27, 2013

Spreading Wings

Woke up this morning with Dan, and headed to the sleepy town of Oak Harbor. We were headed to Friday Harbor, anyway, so I figured I might as well cut the driving time. (For those of you not familiar, Oak Harbor is up north near FH.)

The town was quiet, traffic nice and slow, so I dropped off Dan and headed 1.2 miles by myself to a coffee shop. My first independent driving excursion! I was really nervous, but I stuck in the slow lane, maxing out under 35 mph. I had to keep myself in check, talking myself down from code yellow a few times, happily never hitting a code red. It's quite overwhelming assessing your surroundings, while floating around in a big metal thing with wheels. All the lights, and movement, all the while trying to navigate to a location I'd never been. I had everything mapped out, gotta love those smart phone mapping systems. By the time I pulled into my parking spot I was ready for a nap, or an oxygen mask.

I kept telling myself to breathe. I literally had to continuously remind myself. It was as if my body couldn't remember. When I had my first seizure, back in 2011, I was driving on a highway just next to a canyon with a river. I started to feel funny, and pulled over. Within seconds I witnessed my first out of body experience with my first Grand Mal, it was wild. Then I blacked out. It was a miracle that I pulled over. It is a miracle I survived. I don't know how I was able to recognize what I needed to do, but as I was driving today, all by myself, I started questioning if I needed to pull over. I wondered if my body was about to shut down, if I was overwhelming my mind, if it was about to short circuit. Gratefully, I made it. Now I can rest, reading my Canadian newspaper (way more fun to read about my neighbors above in the great white north), until Dan is through with work. 

Today was a huge step, and expectedly, I'm already pooped. Little by little, I'm determined to cautiously expand my independence. I don't want any setbacks, so I'm on the slow and steady path, but it's forward movement nonetheless. 

As for my Grams, due to her DNR, we extubated her on Christmas Eve (her CO2 levels were continuously worsening). The doctors told us to tell her goodbye, that within 5-24 hours she would do her final sleep. She shocked us all - except my mom who never wavered - by breathing on her own, and surviving her dismal CO2 levels. She continues to improve, even moving out of the surgical ICU yesterday, and into another section of the hospital, acute care. I keep telling my grandma what a badass she is, to which she responds with a giggle and a smile. Best sound/sight ever. All I wanted for her was to not be in pain, to carry out her final wishes, and enjoy her for as long as we're able. Apparently, her strong stalk is proving, her time here isn't over yet. Man what a relief! We all adore her so much. She has even been letting me coddle her a bit (as long as no one is looking). When it's just us I call her my baby bird. I get to feed her, and hold her hand, even tell her crazy, raunchy gossip - her favorite. 

It has been a wonderful Christmas, surprisingly, with the happiest of endings. 

Friday, December 20, 2013

Limiting Posts

So fun waking up to snow! Unfortunately, it makes it a bit tricky to get to grandma at Harborview for a visit. Apparently, the buses are on a snow route (whatever that means). I'm sure I can figure it out, though. I've been driving, with Dan, lately; been taking us to the gym (bypassing I5), driving to and from the grocery store, even using HWY 99 for three blocks. Even drove at night yesterday. Fastest I've driven was 40 miles per hour, but that was back in Friday Harbor where the biggest concern was hitting a deer.

I'm having so much fun getting back behind the wheel. I used to be terrified, paralyzed by the fear of hurting someone. But by waiting for over two and a half years, I think I'm ready. Knock on wood, but I haven't had a seizure since the first week of March. I am so very ready to get back to a normal life, pushing my limits to enjoy more independence. I'm more than ready to focus on things other than my brain tumor. I guess I just got kind of burnt out. Burnt out from talking about myself. I love helping people with their diagnosis, and that will never change, so please never hesitate to contact me - I just get disgusted by talking about myself all the time. I've gotten to the point where I feel like writing this blog makes me seem self-important. And that's embarrassing. I don't have anything more valuable to say than anyone else. I don't have any problems that are worse than anyone elses. In fact, I consider myself to be very, very lucky with my diagnosis, and in life. Shoot, I'm chugging along with 3.5 years under my belt. That's pretty fantastic! I'm surrounded by an amazingly supportive family, and truly the most fantastic friends on Earth, and I am deeply loved and cherished by my perfect mate, the love of my life. I'm capable, I'm improving, I'm strong, I'm happy.

I guess it's finally hitting me that what the doctors originally said, and how they treated me at the UW back in April of 2010, wasn't accurate. They made me feel like I was the fast track to die. That I was practically toast. Now, I'm realizing that this diagnosis of an infiltrating astrocytoma isn't an imminent death warrant, but instead just the reality of a life-long (whatever the duration) illness. This is a marathon, not a sprint. With the exciting concept of living several more years, possibly a decade (hey-oooo, why not, right?), I don't really want all of my time focusing on the most stressful aspect of my life. With that being said, my new idea is to do a post each Friday. That way, you guys have an update in case there are any changes, but I will also be able to focus my energies on getting back into a regular life. Now, it's possible I'll have things to say on days other than Fridays, and at that point I may toss in an extra post from time to time, but by limiting my responsibility to Fridays, it simplifies my life, and removes pressure from my mind.

I am deeply grateful for the continued support, it has been lovely to read the comments. They have been very helpful, informational, loving, kind, thought provoking, and I appreciate them all very much! I appreciate all of YOU very much. I guess I'm just sick of myself. Sick of focusing on MY problems. Sick of focusing on me. The world is both tiny, and gigantic, full of people with different lives, different accomplishments, different problems, different goals. I'm ready to look outward, to learn more from others, to think more about others, to look through a wider scope, to change gears. It's time for me to evolve, to further open my eyes. I don't know what that means for me, for my future, but it's an innate desire that I have to follow. It could be as simple as just learning, again, how to drive, to get back into running, and exercising, to garden, to find and follow my joys. As I listen to my soul's voice, to seek inner happiness, it will inevitably direct my choices, and introduce me to new avenues for me to help others, to find my purpose. I believe that in order for me to truly hear what is happening around me, the beautiful life we get to enjoy, I need to listen and stop talking about myself all the time. I want to absorb as much of this life as possible. It's just too wonderful, too fun, too gorgeous, and awe-inspiring. I want (and need) to breathe it all in, deep engulfing breaths.

The Infinity of NYC

Monday, December 16, 2013

Our Sassy Butterfly

Oh man, I fly out at 7:00 am tomorrow morning for the last immunotherapy shot of the year. 2013 has been, very possibly, the most busy twelve months of my life. Certainly, I have never flown so much.

This trip snuck up on me. Since Friday, our world has been turned upside down. My 81 year old grandmother, one of my best friends (she lives here in Seattle), was in a horrible car accident on Thursday. The hospital couldn't track down the family because my parents were getting a new supply of venom - no cell phones, no contact information. No one could get a hold of my aunt either (turns out she has been very ill with pneumonia). Randomly, a social worker at Harborview Medical Center called an old phone number for Courtney, my sister-in-law (it was in my grandma's old cell phone), and when the woman answered she knew how to get a hold of Kaal & Courtney. The whole story is insane, and impossible to explain without putting your mind into a spin.

The main point is that my grandma was in a horrible car accident. The medical team couldn't get anyone from the family for almost 24 hours. At the scene they had to immediately intubate her. She has a broken collar bone, a lacerated kidney, head lacerations, a split ear (needing several sutures), a deflated aorta, deep bruising on her left hand (causing an inability for her to use it - which is problematic because she's left handed) and several broken vertebrae. Courtney called Dan and I on Friday night, and we immediately ushered ourselves out of the second Hunger Games movie. It was surreal. It was the first time I actively told Dan that he could be erratic with his driving and that I wouldn't care if he got a ticket. My grams is one of the lights of my life, we talk on the phone for hours all the time, I love spending time with her, I admire her, I feel so fortunate to have her in my life. She's a sassy, naughty, hilarious, fiercely independent, kind, often bordering inappropriate (in the best way), little social butterfly. She is my girl, and the thought of her being in a hospital bed with no one to hold her hand makes me ill.

By the time the social worker got a hold of anyone in our family, the doctors had already been forced to make an executive decision for a 8-9 hour spinal surgery. When Dan and I arrived, Grams was still in surgery, so we waited, and waited. We were fortunate enough to be able to see her after she was transferred into her Surgical ICU room. In the meantime, Kaal (my brother), hopped on the first ferry out of Friday Harbor and headed to join us. For the next 24 hours, the only people in our family that we could reach were the four grandchildren. Within the next several hours, our cousins Chris and Matt had driven over from Ellensburg. After checking in on Grandma, the boys drove an hour to find my aunt (that's how we found out that she was sick, explaining the inability to reach her). They also helped track down the impounded car. I've never been more proud of my cousins, and brother.

It was difficult seeing my grandmother in such a battered state, but surprisingly, I held it together. I keep fielding compliments from Dan about my capabilities during this crazy whirlwind, which makes me feel pretty damn good. Truthfully, I'm just as surprised as everyone else. :) I'm a self proclaimed wuss when it comes to blood, broken bones, etc., so I'm very excited to learn that I am actually quite good in emergencies. I've been very fortunate that my only experience with hospitals has been as a patient - and as you all know, it has been extensive. I guess it would make sense that I would know a good deal about the necessary questions to ask, and how to handle things.

Happily, my parents came back to the states on Sunday morning at 1:00 am. I guess I should have mentioned this earlier, but this is my only grandparent. It's my mother's mother. They are intensely close. In fact, the women in our family are a very tight knit group. My mom is relieved to be back, to see her mother, and of course to be able to take care of all the finite details. I feel awful about my grandma's accident, and her pain, but I also feel terrible that my mother is just getting back from a stressful trip and to hit the ground running is a huge strain on her. She's handling it famously, though, I do have to throw that out there. Grams is still intubated, still in the Surgical ICU at Harborview. She has a long, long road ahead of her, and guaranteed we will be with her either in spirit, or just beside her as she heals.

It's nice to have mom and dad home, and safe, and I appreciate that they can be around to help Grams while I'm gone in NYC. I'm looking forward to getting back Wednesday night, and heading back to Harborview on either Thursday or Friday. (Depends on when I can convince Dan to agree I'm rested enough.) I've already decided to pack my Kindle with a billion books loaded on it, and my little notebook computer (just in case I need to handle things); I'm going to post up in a chair in her room. I'm bringing distractions so that I don't bother Grammie. With the breathing tube, she keeps getting agitated and trying to talk, which in turn causes coughing fits. My goal is to just chill, and be there. I remember really enjoying quiet company when I was in the hospital. Sometimes, it's just nice to know you're not alone.

Spring 2012

Friday, December 13, 2013

Changing Directions

Morning. I've been taking a much needed technology break. In fact, I even disabled my Facebook (for good - it was not a temporary decision). I feel like I have a deep need to simplify my life. Social media has never, really, made me feel better. It makes me feel voyeuristic, and often awkward. It's weird how we put the most mundane things out there, thinking it's somehow important. But my truth is that it ends up making me feel like I've wasted a small window of my life while the computer sucks out pieces of me. Pretty dramatic, I know, but whatever. I'm sure it's humorous for me to even say these things, since I'm a prime example of posting overly personal anecdotes on the blog. I have no retort for that. All I know is that I am feeling like nesting, crafting, cleaning, reading, and flying below the radar. I'd like to continue the blog, and by removing different avenues of energy diversions, it will syphon my efforts, simplifying my life. Now, I have to say that a lot of my friends do all the Facebooking, Instagraming, Tweeting, etc., and they love it. It just isn't for me. It gives me anxiety. It's weird, I would have thought, since I'm such a talker, that social media would be a fun outlet for me, but I've learned that it just isn't the case. Clearly, we're all different.

Tomorrow night my parents arrive from another trip to procure the venom. I have also begun taking dichloroacetate (DCA). I'm not taking heavy doses, starting very small at 4 mg/kg body weight. Low grade tumors aren't very glycolic, but I figure, even if it's only 10% effective, it can still help me for the times I don't eat properly. If you're not familiar with DCA, I recommend doing a search for University of Alberta and Dr Evengelos Michelakis. I haven't been eating healthily these days, probably for weeks. In fact, I ate pizza last night. Delicious. I have no self control these days. I just need to be human sometimes, to not have to over analyze, not have to measure, and time, and schedule all of my pills, and venom applications. It's nice to be able to just live. People probably can't quite absorb my usual routine, it's nuts. To live like that is exhausting. Just as a refresher, this is what I'm supposed to be doing each day.....

At least my sweet Jess Abu came last weekend. We had a glorious run around Lake Union in the 22 degree sunshine. She was never a runner before, but in the past year or so she caught the bug. Running is one of my favorite things, probably tied with reading, so to be able to run with a friend is truly the most fun I could have. My sweet buddy is living apart from her husband, who is still residing in Abu Dhabi, as she is completing her nursing degree at John Hopkins in Maryland. Jess and I met back in Texas, she also went to TCU. Jess, having walked through this brain tumor journey with me (you'll remember she shaved her head with me when I was first diagnosed), decided to become a nurse after finding her passion to help others, with me; I was her first patient! Humbling to think that my diagnosis changed her career. It's definitely amazing, and it inspires me. She inspires me. It makes me think big, to remember that life is what you make of it. To keep dreaming. To continue to strive toward your goals. To not be afraid of a change in direction.

Here's a picture of us in front of our little home, just before our seven mile run. It was a spectacular day. Days like that are what I live for.

Friday, December 6, 2013

Decidedly North

I am delightfully exhausted. Texas was everything we could have dreamed, and more. Since we've been home, I've been indulging myself by working on craft projects, deep cleaning the home, and just doing whatever I want (which, truthfully, consists of load after load of laundry). There's only so much time in the day, and by taking time off from the blog I've been able to spend my energy on less emotional things like taking the bus to Target. It sounds silly, but just taking a bus and shopping can be very taxing on my body. There was a time when I couldn't even handle box stores because of the loud sounds, flux of people, and obnoxiously bright florescent lights, it was seizure inducing.

This blog has been such an amazing tool. It has helped me process this experience, recover from surgeries by practicing my language and typing skills, and it has brought me friends, both old and new. My biggest joy, however, has been helping consult with brain tumor fighters. On average I talk to 3-5 different people (usually newly diagnosed) over the phone per week. The phone calls range from 1.5 hours to 3 hours. There is so much to know when dealing with the horrible diagnosis of a brain tumor, and I love sharing everything I know. I wish we would have had someone to teach us the ropes, to explain the different types of surgeries, the scans, the difference between a neurosurgeon and a great neurosurgeon. When you're newly diagnosed you don't know that there are life changing differences between brain centers.

I am very grateful for every person who contacts me about their diagnosis. It makes me feel useful, helpful, that I'm possibly preventing one less complication, or extending their life in some cases. The difference between a complete resection and a partial is most definitely a no-brainer. No pun intended. You always want to get the bulk, or all of the tumor out, and sometimes one surgeon can get it all out when most other surgeons aren't comfortable attempting. Anyway, I won't go into all of it here, but just know that there are always tricks, and things to know, from people that have gone before us. I have learned so much from others, and all I want to do is make other tumor fighter's lives easier. Due to all of the phone consultations, I end up feeling first, energized, then exhausted. I wouldn't change it, though. I guess the only tricky part is that it does make me less able to write on the blog. I can only deal with so much emotionally charged stuff in a day.

The wonderful news, though, is that I don't have much to write about when discussing my tumor. At this point I'm just trying to remain healthy, and focus on helping others navigate this crazy brain tumor world. 

Here's my latest craft project:

Now I just need to change my last name...

And for some of my favorite TX photos:

I heard a quote the other day, "Would you rather be a shooting star or the North Star?" Contradicting in nature. Equally powerful. When I was younger, or more accurately, before the diagnosis, I held the stance that I would rather be a shooting star, an asteroid, a comet. To live life loudly, without abandon, with no regrets. But now, in this life, my tumor life, I yearn for the life of the North Star. I work toward slow and steady, reliable, longevity, dependability. When faced with death, literally, my own mortality, it changes how I view life, what I cherish. I don't want to just be Dan's shooting star, a blip, a hot flash. I would give anything to have a long, happy life as Dan's North Star, as he is mine. 

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