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. 

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