In All The B's

*Written somewhere over the midwest, as I flew home from NYC late last night.*

I never anticipated growing up. I mean, who does, or we would choose to wear sunscreen at age 4, and I've never seen a child apply SPF by choice. When you get this crazy diagnosis it's like living in an alternative universe; you're instantly catapulted into the raw threads of life. You're 29 and 99, all at once, wondering where your life went.

My favorite part of cancer is that there's people whom I've fallen in love with. They're kind, they're gracious, they're real, and explosively smart. They're honest, we quip, tease, and I can't believe that somehow my life collided with theirs. I know that I would have crossed paths with other people in my sliding doors life, and they would have been deep, and knowing, encompassing, challenging, hilarious, so I know you don't have to be a cancer patient, or caregiver, to be "enlightened" - yuck, I don't even like that word in the context. I'm swirled with people of all backgrounds, different histories, and the longer I live, the happier I am - if that's possible. Who would pick cancer? Not me. And I'm not convinced that I needed to get cancer to meet these souls. We could have met when we were in a shared taxi, at a resort, on a hiking trail, in a public bathroom. I mean, come on, you guys know me - a person is just a friend I haven't met yet.

I'm expected to do another brain surgery in Oct, and that was put off from May. I kinda want to point out what a bad girl I am, but it's not that simple. I needed proof to make sure that when they saw into my skull again, for the 4th time, it's necessary. I now know 7 different patients who had brain surgeries for recurrence, and it was in fact necrosis, inflammation, or slowly growing scar tissue. Crazy!! No spank you. (Granted, over the past several years, I've probably talked to hundreds of patients and caregivers - so it's not exactly common.)

I should have already gone under the knife, and I know from experience that I should be panicked; I could have already lost my crap. But you know what, we will die when we die. Ya, sure, duh, if you love those around you, you don't want to let go, and I don't know what has changed, why I'm chill, but who cares, all I know is that I will live my life not in fear. And more than ever, I'm not focusing on what I do not have. We are out of treatment money, yet I have never been more at peace. How weird! I'm not going to look a gift horse in the mouth. Maybe I won't even look at any horses.

I'm literally flying home from NYC as I type, no treatment rendered. A risk from international treatment issues. My point is that I was listening to a couple (just a few) survivors complaining about the fact that we did not get our most recent treatment on time. Not all, but several, were pissed because they had vacations scheduled. Weeks off. Do they not see the projects we drive by on our way to the clinic? Every time I blow through South Jamaica, Queens, on my way to and from treatment, I think about all those apartments, those high rises. Statistically, there are people in the projects that I pass and I doubt they're getting any cancer care, in fact any medical care, and when I hear those complaints I'm floored. It's not my role to teach people, to change others, but man is it eye opening. Fuck you guys, seriously, what does it take for people to realize how gifted we are? I'm not saying we can't complain about circumstances in life, but know your audience. Put things in perspective.

We are the privileged. Yes, my treatment was delayed by several days. No I wasn't able to stay or come back. Everything is a give and take. 

Am I scared? Bheh. No. Yes. Sure, but not really. My fear is to leave Danny. I'm convinced that if I die before him, I'll haunt him in the bees, the butterflies, the bats, the butterscotch candy he sucks on. In the burkenstocks the person next to him is wearing. He will see me in the laminate countertop on the ferries as he heads back to our home island. In the whip of the wind against his face as he gets into his truck for work in the morning. He'll see a red summer dress and think about my silliness. Is silliness even enough to accurately describe? He'll see a goober dancing so ridiculously in the grocery store that I hope he'll dance with them to not leave them hanging. 

But worse would be if he left me. That would be unbearable.

See, I have it easy. :)

A photo from my First Descents kayaking & camping trip earlier this week.
No need for a filter, life is stunning as is.

Half-Assed Update

Hi Friends,

Sorry for the long hiatus. To say it's been a crazy month would be an understatement. 

I've been on a few treatment wild goose chases, and some strong leads. I have about an 85-90% lock on my new protocol, pending any changes. (And there's always changes.) I can't get my fingers on everything immediately, but I'm headed back to NYC next week for a previously unscheduled treatment and meeting to address a few ideas. 

It's been a highly stressful time, but I'm still having a lot of fun. It IS summertime, after all. 

I've wanted to do an update, but things were up in the air. And, I don't really have the time to emote, or the energy to write just to write. It's been taxing, and when I wasn't scrambling, contacting doctors, radiologists, researchers, patients, I needed to decompress so that I could wake up and do it all over again.

I have no clue if this new protocol will be enough to stop the tumor growth - oh wait, I think I haven't even told you that the tumor is, by all consensus from every single one of my doctors, clearly growing again. Crap in the pants is about how I feel about it. 

I keep wanting this tumor life to be over, to not live in limbo, but oh well. It is what it is. I hadn't said anything on the blog - at least I don't think I did - but Dan and I had started the process (very premature stages) of getting approved to adopt foster children. Because I had been stable for over a year, it was a legitimate possibility. But I keep learning that my life is not really my own, and I don't have the luxury of planning. I realize typing this out that I may sound sad, but I'm not. It's just a fact. 

Each recurrence I am reminded that I need to just be grateful to be alive, to be here in this moment. That fact has to be enough for this life. Good thing I've been doing a damn good job of it. I'm still just as social, still walking with my group as much as I can, jogging, gardening, doing weekend trips with friends. It's not that bad to live in the moment, to tell you the truth. Maybe it's like those crazy fools that are adrenaline junkies. I'm not to that level, but I can appreciate their hunger.

Our lucky Independence Day jelly in FH. Those whispy little stingers. Just like life, beauty always comes with a price.

Also, I want you guys to know that when I run into people at the grocery store, or the coffee shop, and people introduce themselves, or say hello after years of not seeing each other, and they tell me they follow the blog, and that they care about me, about us, it's about the most gracious and heartwarming thing. In those moments I just want to reach out and hug people. And sometimes I do, and other times I don't want to freak them out. So thank you, for caring, and for telling me. It makes me feel incredible!