Working With A Governor

You know what's crazy? You get diagnosed, you go through surgery, you recover, then the real test comes in living your life knowing that you have tumor cells in your brain, that the tumor (always) comes back (according to your doctors) then you start over again. Each time they dig in your brain you hope you wont die. You hope that the majority of your brain, the stuff that makes you you, will remain after they fiddle. That you won't be too damaged. You know before hand that you'll never be the same, no one ever is, but all you can do is hope that it's a minor shift. You go home, you fight, you research, you add treatments, you change your diet, you work incredibly hard. And at the same time, even though your whole life has been derailed, all of your dreams put on hold, except for a twinge of sadness here or there, you're just thrilled to be alive. You live your life revolving around scans and treatment, knowing each scan could be all it takes to devastate, that each treatment may not be enough. You battle fatigue, you battle the horror of seizures. And all the while, through it all, you're just happy to be capable of reading, and writing, and walking, and running, and laughing, and recognizing the beauty of each moment, of everything around you and most of all that you're able to fight. Cancer has a way of stopping the world from spinning. Everything happens at once, then not at all.

Tomorrow morning at 8:00 am is the MRI scan. Again they poke, jerking that needle into my vein, readying my body for the contrast dye that will tell all of my brain's dark secrets. Each MRI, each scan, is the biggest test of my life. Essentially, I live each day studying for this moment, for each exam. I remember my parents telling me when I was in my 20's, with admiration, that I was the consummate student - that it was my lifelong passion. We just never knew that I would be attending my own university, earning my own solitary degree. A degree in my body, my health, my survival. I love learning about the facets of tumors, of tumor life, how to outsmart them, to jump the hurdles. Sometimes it's scary. Sometimes it makes me viscerally ill. Regardless, I continue. My only wish is that I would have more energy, that my brain wouldn't shut down. Since the first brain surgery my body has a governor, and there is nothing I can do to change it. I work within specific boundaries that my body dictates. You guys know I fight it, pushing too hard at times. I keep hoping that just like with a muscle, all my mind needs is exercise to gain endurance. Doesn't seem to work that way though.

Sorry for the delay in my email responses, I'll probably be backed up for the next week - I'm still having to take daily naps to catch up after all that research. Please send a second email if you have an urgent question and I'll do my best to get back to you. For now, Dan's sneaking me off to hit golf balls (a close second to my favorite - the batting range) to de-stress.

As ever, but profoundly obvious, my fate is in the hands of the universe. Let's hope I've done enough to keep that parasite at bay.

Hot Dogs For Seagulls?

Man. I did not sleep well. I feel like I was in a car accident. No rest for the weary though, I had errands to run today! Finally, after living in Green Lake for the past few months, I found the perfect place to volunteer. It's an independent living facility (they also do assisted living, and full time care) right on the lake. I had my tour today, which was great, and they pricked me for a tuberculosis test which was no big deal. I should hear back from the coordinator by Sunday to figure out the exact time next week when I'll start. I'm so excited!! It's not a major commitment, just about an hour and a half a week, and I think it's going to be such a wonderful addition to my life. 

When I filled out the application they wanted to know if I had any talents, hobbies or interests. Tough one. I wrote, "Talking :) (yes, I literally drew a smiley face), listening, reading, abstract painting, and walking." Thinking back, I'm surprised by the lack of hobbies. I guess I could have added blogging, writing, running, and cooking, but those just didn't pop up in my mind. No big deal though, Donna, the coordinator and I talked and I told her I'd happily do anything - just put me to work! 

On the walk home from the living community, I encountered this fine gentleman feeding the birds. I talked to him for a bit, and he handed me a huge jar of seeds to help him out. It was so much fun that I didn't even scold him for feeding the seagulls hot dogs. GROSS! That can't be good for them. 

My Bird Buddy

HELLO. Look What I spotted Parked Along Green Lake! 

Side note: My favorite part of today was during my tour. I was introduced to so many lovely people, including a gentleman named Jim who was looking dapper, dressed in a beautiful tweed blazer, headed to do group exercise. I think I'm going to learn a thing or two about fashion, grace, and elegance in my near future. This volunteering thing is going to be a blast!

Work Hard Play Hard

Today was beautiful. Danny helped me practice my writing and reading. We took in some sunshine at the beach to relax. Heaven.