Sunday, November 15, 2015

Day Three: Spinning The Story, Saying Goodbye To Empires and A Statistic (Santa Barbara, November 15, 2015)

(This post assumes you read the prior post: "It Was Supposed To Be A Travel Blog, Not A Cancer Blog")

As I drop work projects, move plans around, I get the question “Why?”

I am not sure how to answer this question. I have told people I am sick or that I might need surgery.

I have no idea what to tell people when they say, “Hope you get well soon.”

To be honest, this comment literally makes me laugh out loud at the shear triviality.

I don’t know how to spin the story. Yes, the Facebook’oSphere, if they read between the lines, or to the end of the blogpost, is now well versed in the story. But I am not sure I want many of my professional contacts knowing. Right now, I do expect to continue working for a few years. And as people ask me why (I plan to work), it angers me. I love what I do. I love the people I do it with. I love every flight to every destination. (And what is the alternative… staying home and waiting to die?)

I think I will work less. I don’t plan on building my company any more. I will take consulting jobs but have no expectations of employing others on an ongoing basis. It is about enjoying what I do, the dreams of building something great and successful are yesterday’s.

I need to say though what those plans were. I have a network of incredibly intelligent, dynamic, capable, skilled friends who just cannot handle the monotony of eight to five. I am like that. I dreamed of an empire (ok, maybe a loose knit web) of amazing people who worked the way I and they wanted to. Generally we are all game for hardcore months, but then we equally want months off grid, who cares about income. We want engaging, stimulating challenging work, but also wild adventures to the end of the earth for weeks and months at a time. 

This was the consulting company I was building. This was my dream. An incredible consulting company delivering a great product because the employees, my friends, got to work the way they wanted, on what they wanted to, the way they performed best and were happiest. For me, I like to put in five hours every day… and I like my afternoons off to go hiking. I am perfectly happy to put in two months of 15 hours straight every day, for two months of zero to two hours a day. My goal was to facilitate my friends’ desires for a happy life, following their own goals, through my consulting company. 

That was the business dream. I am not a standard humanitarian. I don’t give to charity. But I anonymously give to friends and acquaintances in my network when I realize they are in need. I am selfish in my need to see the ramifications of what I give. But I don’t need recognition. I am good at business. If I could give not just myself but the people I know the lives they wanted, it would have been amazing. 

It is like the dream of kids. Faded, like skywriting on a breezy day.

That is not to say I will stop working, cause in the end, I love what I do and the people I do it with. I won’t take the crap work I don’t like anymore to build my business. But the projects I like, fabulous!

So how to tell people… so they still give me work but give me the latitude to understand that sometimes, that work is just not the priority for a very good and personal reason….

There are people alive today who in the 1980s tested positive for HIV. They didn’t expect to see the 1990s. They are very rare. But they are here. My oncologist may give me a timeline tomorrow, but that doesn’t mean I have to match it. 

I said in my last post that every woman on my material side has died of female cancer. Every one of them was diagnosed after menopause. Every one of them died older than 55. Now I got an unfortunate jump on the game, with a diagnosis in my thirties. But my 93 year old grandmother, who had cervical cancer, 39 years ago, is clearly still here. My mother is a survivor. My great aunt will probably leave the sisterhood of survivorship to casualty this year. She is in her seventies; I think past life expectancy for her generation.

My cancer has responded, repeatedly, very well to treatment. And who knows what treatments will come tomorrow.

I am not stupidly optimistic. But I have friends who doctors thought would die in 2010, who are still here today. The truth is, while cancer treatment is considered a science… it is far too close to a black art to start talking statistics.

But here is a statistic and some education anyway, cause that is the type a girl I am, a quant girl. Metastatic breast cancer has a five year survival rate of 22%. But that does not differentiate for age; that statistic includes far more women who are in their seventies than women in their thirties. It does not differentiate between cancer types which are highly responsive to treatments (like mine) versus others. It does not differentiate for size of tumor (mine are all small). It does not differentiate for location (mine are in my bones which are considered strangely treatable). It does not differentiate for wealth (which also plays in my favor). The statistic is from 2014, which means it includes people diagnosed in 2009 before advances available today. My only major hit right now is that I believe I have four tumors (multiple spreading); and that does not work well in my favor.

Women with this diagnosis have lived over a decade, and for that to be true, they had to have been diagnosed in 2005, again, ten years before current medical treatments.

It is a strange pep talk. But you know, I think I have more than five years. I am not sure I will hit ten. But I am pretty confident I will get close. It is strange to think of your life expectancy when it is closer than decades away. It is also true but strange to think, there are people I know today, in perfect health, who are younger than me, who will die before me.... a simple statistical near certainty. 

The only question now, for me, is how to buy the most time. 

Cool: Denial and my current good spirits.
Stupid: A reason to be in denial.




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