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.

It Was Supposed To Be A Travel Blog, Not A Cancer Blog (Santa Barbara, 3:15pm November 13, 2015)

Let me set the scene for you. I am alone in the cancer center parking lot. The cancer center is closed.

I am slowly radiating away the radioactive bath from my test for metastatic breast cancer a couple hours ago. 

It is a Friday. I am hoping for results today… which I may not get.

On Tuesday, I had a blood test which while not conclusive for cancer, has better odds for accuracy than most things in life.

Many people said, “Well, don’t worry until you know conclusively.”

Can I shoot those people? 

I have had cancer twice now. I honestly don’t know how many surgeries. I am missing factory installed body parts. I have been on four types of chemotherapy spanning years. I have done radiation. And I am in my thirties.

So far, every woman on my maternal side has died of female cancers. 

When you cut down to it, my odds fucking suck.

So I called my cancer support group friend on Wednesday. She said something really prescient. When cancer is displayed on TV, people go for tests and within four minutes of screen time, they have the diagnosis. TV and most people never talk about the agony of the wait. It is AGONIZING.

I don’t know if I have cancer. I strongly suspect it has spread to my abdomen for a variety of vague reasons, none conclusive. 

I was supposed to leave on a six to eight week business trip in two days. It is surprising to me to discover how much I was looking forward to this trip and how much I feel it is being pulled away from me.

I was supposed to deliver one of the biggest projects of my professional life this week; I didn’t.

For the first time in years, I have felt great in the last few months. Really great. And happy. And like my life is going the direction I want. And like I have control of it.

And it is slipping through my fingers like sand.

I am technically old to be having kids, but I always had dreams of meeting someone amazing and having a couple of munchkins. I would be lying if I said I have not had names picked out since childhood.

Names which are fading…

For children which I suspect will never be.

I am a strange one. I LOVE facebook. I posted this morning “Today I am asking the universe for favors and my friends for prayers. In lieu of hugs, a like of support would mean the world to me.”

The outpouring of support was amazing and something which I cannot even begin to explain how grateful I am for everyone there. So grateful it brings me to tears.  I really don’t think I can explain how much this means to me.

It is also in a strange way the best support. I need support, but I need the right support. Support that says, “I care.” That is all I want and I want a lot of it.  But that is really all I want at this point. (No company, no calls, just, “thinking of you.”)

I am alone in this parking lot by choice. The people willing to be supportive and present, don’t, quite frankly, provide the type of support I need. Forgive me, but fuck the cheerleaders. Let’s be realistic here. The ones best for right now, are too far away, some of them so far away as to be dead for years, of the same malady. (Rest in Peace, Mananya Tantiwiwat.) I don’t have a significant other, and I have to be honest, sitting alone in a cancer center parking lot sucks. But if I knew the right person to call…. for the support I need...

(And don’t get me started down the road of whether it would even be fair for me to have a significant other, given the likelihood of just torturing them with my dying sooner rather than later.)

So in the last day, walking along multiple beaches, I have my A, B, C, etc plans. I know what I am going to do for the range of possibilities.

But I am so angry. I really liked my life. I loved my work and the three continents of travel I expected to do in the next six weeks. I was looking forward to seeing old friends in strange places. I feel great and was finally looking forward to actually considering dating for real.
I was happy.

The last time I had a rediagnosis (yes this is different from a recurrence), I felt like I had failed cancer the first time. My rediagnosis occurred when I was working 40 hours a week, spending 20 hours a week in the car, ten hours a week in classes and another 20 studying. I was not happy.  Unlike many survivors, I had not made changes for the better though I had definitely made changes committing to a long term life.

This time around, I AM HAPPY. I like my life. Quite frankly, people tell me it shows. Everyone I has seen recently says I am “glowing” and I am. (I hear glowing so often recently, from so many different people, it is just weird.) Cause I like my life. The only improvement I wanted to make was someone to share it with. 

If you move in cancer circles, you know the #FuckCancer movement.

#FuckCancer.

Cool: I love my life.
Stupid: This cancer fucking crap going and screwing the whole thing up.

PS: At 4:45pm, I was provided with the diagnosis of metastatic cancer.  By the way, this diagnosis was not on my list of planned contingencies. I will likely be asymptomatic for years, with a cocktail of modern medicine. A decade may be optimistic. There will be no munchkins and that retirement fund, no need. Kind of feel like I saw the future, and it says, “Game Over.”