Mar 26, 2014

Pure Delight

I'm starting to grow out of my daze from all of the travel and excitement from the previous week. Since Monday night it has been like living with a perpetual hangover. Ironic since I don't drink.  

This past week has been so much fun! My head is still spinning - in the most happy way. To do the Manhattan thing with Dan, then jump over to Friday Harbor for the weekend for the race and barn thing was so much fun. I got to see so many friends, and met a bunch more. I was embraced, literally, hundreds of times. It was healing, and energizing, and all the laughter and rediculousness was pure and I loved it. Here's some pictures of our group for the race, we took a photo at each mile. 











Between the Run Ladies Run race and the community barn dance, we raised enough for half of a shot, which is GLORIOUS. Thank you!!

These treatments are crazy expensive, but I believe they are helping. Of course, I get nervous and scared that my tumor will grow again, I talk about it all the time, but I'm hopeful as well. Mostly just hopeful, and really, really happy to be here. 

Visiting with friends this past Saturday, I would listen to what they were saying, then my heart would interrupt, and she would swell, and I would mentally pinch myself, always surprised by how lucky I am to be alive, and how lucky I am to be so deeply loved.

My treatments will take another 2.5-3 years to complete, and I probably sound nuts, but who knows, maybe these crazy things will work! Maybe some day Dan and I will have bigger more fun things to focus on than treatments, like buying a home, or starting a family, or maybe backpacking through Europe to visit my Polish family. It's weird to live this life, to in many ways postpone almost everything, stuck on a hamster wheel of faith that I will remain healthy at the expense of changing nothing so that we can endure treatment after treatment. Our lives are complicated, more than we can ever truly explain, but that's the life we were given, and I think we're living it well. 

I'm happy to indulge in my venom eight times a day, and do all the supplements, and the NVD shots, and yet, I will be excited when I have more freedom to not be tethered to a refrigerator or cooler (venom must always be refrigerated), or to not have the expense of the treatments, the luxury of spending our money on things other than tumor stuff. Aaaah, that sounds fun! Just the thought of being able to save money sounds heavenly. To have assets. The security in that could make me cry in delight. The odd things we wish for.

Although I'm touching on it now, I can't spend much time on dreaming big dreams or making life goals because the excitement, coupled with the thought of waiting, and waiting, and waiting, and waiting, then the possibility (or according to doctors - probability) of the tumor growing back (which of course would crush everything) could quite literally squeeze all my light, all of the hope, out of my soul. Instead, I watch the seeds sprout in my garden, each leaf from the plants unfold, the petals of the hidden flowers unfurl. I celebrate the little things because I don't have the luxury of making big life goals, only because I don't want to be disappointed and that's okay. I accept that. Life is not on my schedule. Instead, life makes demands of me, tells me the rules, and my job is to listen and adjust. 

Mar 21, 2014

Join Us At Brickworks

Dan and I made it back home from NYC late last night. It was a whirlwind of dinners with friends (Steph, John & Octavia and Nate, Miriam & baby bump). We toured ground zero, then ran around the greenway, waving at Miss Liberty, hit the High Line, zoomed through Time Square, wandered down 5th Ave, jogged Central Park, stopping through Grand Central Station, we sweated all over the city - it was a dream trip. You can cover so much ground by running. Somewhere in the controlled chaos was the NDV shot, but for the first time it wasn't the center, not the focus, of the trip. I felt free, and confident, laughing with Dan as beads of sweat rolled down our temples and we dodged the madness that is Manhattan. The dinners we spent with friends were intoxicating. To be alive, and free, and capable, and curious, and happy, and strong, makes my soul dance and warms my spirit until I can't help but smile, to the point where I have to veil my teeth because they're cold. It's a powerful feeling.

(John, Steph, Octavia, me & Dan)

(Miriam, baby bump, Nate, me & Dan)

(tiny Statue of Liberty beside my head)

(Freedom Tower)

(Rockefeller Center)

(Found a statue in Central Park commemorating a Polish king - hi Polish family!!)

(Grand Central Station)

Today, we head to Friday Harbor for the Run Ladies Run race that takes place in the morning. I'd been planning on walking the 10k with a group of girl friends, and I'm sure I still will, but my legs are intching, almost trembling with excitement, with the idea of a run. It is so hard to force myself to walk when my quads love the burn.

If you're in Friday Harbor tomorrow night, please stop by Brickworks for the Barn Dance between 5-10 and say hello. You don't have to donate any money to get in, and we love kids, so please bring the whole family. I'm really excited to get to hug people and say hello. There will be pizza by the slice thanks to Daniel at Van Go's. He have us a screaming deal so that we can make a little profit to benefit my medical fund. But please don't feel like you have to eat, or spend any money, just come to say hello and laugh and visit with friends. 

I borrowed this photo of Daniel at Van Go's from www.sanjuanupdate.com - I hope Tim doesn't mind. The island news sources have been incredibly kind in getting the word out. Hope to see your smiling faces!