Showing posts with label protocol. Show all posts
Showing posts with label protocol. Show all posts

7.08.2016

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!
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