Venom-ing All Over Town

Sorry I'm not posting much these days. I can't seem to get my thoughts together, which sucks because I have so many stories. It's times like this that I can't help but be afraid that the tumor is growing back. I can't remember even basic things, let alone important details. It's ridiculously scary. I realize that stress messes with the mind, and I've been doing a lot since Moab, in fact just a couple of days after I got back I flew to NYC for my most recent immunotherapy shot (it was so fun to see you Nate, Miriam, Sol & Larry!!) - but still, it feels different. But maybe it always does.

I talked to my dad the other morning (maybe it was even yesterday - it's all such a blur) and we started the process of scheduling my next MRI which, once approved, should fall on October 25th. I had a total and complete breakdown just scheduling the scan. I'm so scared. And I hate that I'm scared. So I did the only thing I thought to do, I reached out to my FD campers, knowing they would understand. And within moments I was surrounded by love and support. They get it. They know that fear intimately, an ominous cloud, the Grim Reaper hidden in its' dark folds, red eyes glowing.

My brain may be fuzzy, tired, not-connecting, sad, scared, out-of-wack, but I made a deal with my friend "Crush" (Katie) that I was going to make it to the gym every day, Monday through Friday, from now until the MRI. I only have to be there for five minutes (although so far I've blown that out of the water). It's a trick to get me moving, to distract me. A rule to get me out of the house, and out of my situation.

I used to just chill at home most of the time because of the venom, and its' applications (gotta refrigerate, have to find a spot to lay down, etc.), but when I was with First Descents, on our final long three pitch climb, our FD Instructor/Camp Facilitator/Friend "Honey Bucket" climbed up the mountain with my venom strapped to her back so that I didn't have to sit below in the car by myself. It was profound. It changed me. Somehow it had escaped me that I could stuff a cooler into a big pack and go. To get nuts and live; to live like a normal person, not a hermit. (Sorry hermits, I still love you.) So I've been off on park benches, on rocks, on anything that will sustain me, dropping chlorotoxin into my nose. I've grown thicker skin, ignoring the stares, the odd looks, the whispers.

Honey Bucket with venom in tow

Venom-ing at JFK by myself (super tricky photo op)

Venom-ing on top of Mt Si

Venom-ing on a walk with Dan

So, again, I'm sorry that I'm finding it hard to think straight, that it's hard for me to formulate blog posts, but I'm sure you understand, and I appreciate the compassion. For my sanity, I must get out of the house and move my body, or it feels like I will evaporate, or disintegrate, or spontaneously combust, leaving only fingernails and hair in my wake. (I don't know why the hair and nails would remain, it's just a hunch.) Off to bed. With love, Jess

The Butterfly Effect

Holy shit I have been lonesome. I don't normally swear on here, figuring I can probably illustrate pretty well without, but, good God, I had no idea how lacking my life was until I went to camp and met other cancer fighters and survivors in person. Until I bonded face to face; until I spent time laughing about our stories; until I realized that although we have different battles, we're essentially the same. We have the same fears, the same trials, the same macabre humor, the same fighting spirit, the same heart and the same soul.

I have been on this hamster wheel of surgeries, and treatments, and applications of treatments, and with that I've been isolated to our house for well over a few years. Obviously, I get out (I just walked four blocks to the grocery store, in fact), but it's always limited, always within time constraints of the chlorotoxin. I've been conditioned to fear seizures, and seizure triggers (heat, sun, noise, thirst, hunger, emotional stress, physical stress), leading me to micromanage my life to an exhausting minutia. I just want to live, and explore, and laugh, and for the first time in four and a half years, in Moab Utah, I felt normal. I felt completely happy, blissful. They got me. They told their stories that I knew in my bones. I felt it. We were the same.

I do a great job of recognizing the beauty in life. In every single moment I am tangibly grateful for each breath, each laugh. I have a lot of fun noticing the little details each day (the fresh breeze on a new soft leaf, the color of the sky when I peek out of our bedroom window) but I am not living the way I want to live. Not because I have cancer, but because I have so many constraints. Too many constraints. I can't not do the chlorotoxin every four hours. I can't not do my immunotherapy. But what I can do is surround myself with people who get me. People that support me within my limitations. I have a great group of friends, but now I have a tribe. A tribe that feels like family. It sucks, but when you get diagnosed with cancer, all of a sudden everything changes and it never goes back. I've had to distance myself from friends because they didn't understand my needs, both physically and emotionally. I've had friends distance themselves from me for their own reasons. It's a complicated life that we live, and for the first time, talking to my peers, looking in their eyes, I realized that I don't have to entertain my apologetic internal dialog about what I'm going through. Cancer patients don't just fight for their lives, they also shelter the people they love, about their fears, about the true state and reality of the struggle. They try to assimilate, to blend in. It's just easier for everyone, but it's exhausting. It's necessary because people can't really handle our burdens non-stop. It's too real. It's too honest. It's too close to death.

I feel like I've awakened. I feel like I found an oasis, just in time to replenish my body. I don't know how this trip, this experience, will change the trajectory of my life, but it will. It always does.

Moab in Pictures

Still at cancer camp - it's even better than I could have imagined! I keep conquering big walls, looking down, and thinking to myself, "Yep, I just did that." 

And I couldn't have done it without my new friends. My tribe.

I'm living in an alternative universe of the most amazing breed of people. How have I not reached out (in person) to this community before? I've really been missing out.