There doesn't seem to be enough energy to go around. Last summer I believe I was about to start to get better as everything was going well but as soon as I was taken off the bulk of my medications including my Cyclosporin (my main ant-rejection med), the H1N1 hit me hard.
Despite doing everything right and getting anti virals right away it sent my body spiraling out of control with illness and graft vs host flare ups. It attacked my internal organs and knocked me right back in my recovery. It caused more internal havoc than I can even explain here.
So this summer with that behind me, again I feel like I can move forward without any real proof that it will happen except that I believe. Believing is powerful stuff but I know a body can't be willed into submission (trust me, I tried). It needs to be ready to to be able to work hand in hand.
So here I am. Standing atop a list of expectations. Through these last few years I learned to write down the things that I was missing out on. It gave me some comfort to know that those things would still be there for me later if I wrote them down.
Some were written on sticky notes, some in my endless piles of note pads but mostly in my sketch books.
To me, my sketch books are a place to capture ideas rather than draw things. The books are endless pages of scribbles of drawings and words only I can decipher. Each thumbnail sketch is linked to endless amounts of information that's in my head. The sketch, list or scribble is nothing more than a string tied to a finger as a reminder. I have many more ideas than I could ever complete in a lifetime but they still keep coming. The worst times I've had are ones where the ideas and creativity aren't flowing. The inner creation is more me than this body I lug around.
So through these last 4 years I eventually ended up with a list. They are things I wondered about or longed for or just thought would be fun to try. Even if you're not deathly ill it's still easy to let life slip by without any notice. I want my moments here on this planet to count and to stand out. I want to try, try and try again even if things didn't work out. I want to "take chances, get messy, make mistakes", as the wise and all knowing Miss Frizzle would say.
So here it goes. This is a list of things I want to try and do and document here during the next year. I will likely retire this blog on the 5th anniversary of my stem cell transplant because that just seems fitting. I don't want to be cancer girl forever because that is just one small part of me. I am so much more than the sum of my experiences.
Dye my hair bright fuchsia
Be a roller girl with the Eves of Destruction
Rebuild My Physical Strength
Lose the 20 Prednisone Pounds
Update my Skills to be a Web Designer
Live at a Lake
Cliff Jump at Paradise
Be Fucking GREAT at Hooping
Pay off My Medication Debts
Ride a Bike on the Galloping Goose Trail
Change My Name
Photograph People with Cancer/Improve My Photography
Make Hoops to give to Friends and Family
Fall in Love
Rock Wall Climbing
Build my Fuck Cancer Site
Go to the OMG Conference in New York
Make Someones Day
Create a School Bursary for a Young Adult Who Has Cancer, or Has Lived Through Cancer
Swim out to Thetis Lake Island
Collaborate on a Painting with the Woodpile Collective
Make a Kick Ass Fuck Cancer T shirt
Meet Arthur Vicars
Create a Body of Work and Show it in New York
Make Cancer T shirts with Tasteless Slogans
Create a Zine
Dance in the Streets of Brazil
Tell Someone I Care
Create an Artist Bike Gang
Create Videos of My Adventures
Make Some Moo Cards for my Blog
Have Bike Picnic
See the Rockies with my sons
Be a Better Parent
Get out of the House More and Attend the Festivities in my City
Create a Bursary for Young Adult Cancer Survivors
Adopt the 'Survivor' Moniker for this Last year and then be free
This list will morph and be revised over time with things being added and I will post the things I've done. I have been thinking of tackling this list for quite some time... hopefully curiosity doesn't kill the cat.