The Book of Etiquette and Morality for the Dying (Santa Barbara, February 7, 2016)

It is often said, among the dying “You find out who your real friends are.”

I disagree.

I think the unfortunate truth is you find out who can handle it and who can’t.

I know this first hand, from the other side.

My first cancer buddy was a woman, my age, in other words strikingly young for this affliction, similar educational background, who went through treatment and was well into remission when I met her. She shaved my head when the shedding got to be too much.

When suddenly she had a recurrence and went into fast decline, I could not handle it. I distanced myself from her as if her remission was wildly contagious. It was an awful thing to do. When I finally saw her, I cried. I can tell you today, crying was perhaps the worst thing I could have done. She passed away a month later, nearly five years ago. Mananya Tantiwiwat, to this day, I am sorry, but unfortunately, crying again at the thought. Sorry again and some more. (Was it wrong to distance myself from her?)

And yet, I continue to make the same error. I again know another woman, Megan, similar age, similar diagnosis, similar point in life. She would be great support, but I can’t do it. I push her away fearing, terrified, that she will get worse before me, die before me, that I will have to watch her suffer, the prophetor of my ill-fated destiny. (Is it wrong that I can’t do it? Am I wrong to fear this?)

I don’t blame those who distance themselves from me today, now.  (Is it wrong for me to accept this? Is it wrong to absolve the distant?)

After all, have I not, just two paragraphs ago, admitted to the exact same moral weakness?  (Is this a moral weakness?)

But I miss them, the distant, the disappeared. I really miss them, profoundly. (Is it wrong for me to morn my loss of the distant, for the loss of their presence?)

But I also get it and I will take it over crying and sad-eyes.  Don’t get me started on sad-eyes. I hate sad-eyes. How I loathe those wide, teary sad eyes to the depths of my being. (Is it wrong for me to hate the sad-eyes people? Is it wrong for me to run the other direction from them?)

I am also grateful, in a way I can feel resonate in the depth of my body, my soul, for the people who are exactly opposite. Those distant acquaintances who step up to the plate and become real support and giving friends. Joy Ronstadt, time and time and time, and hopefully time and more time, again. (Is it wrong that I could never be this person, but I so easily take from them when I need it?)

I am also in this awkward position, currently, of being cheerleader. People who know I have had cancer, think I am a success story, and need to hear that success as they or their loved ones face similar battles. I have not told Tricia yet that I have a recurrence and I cannot be the success story she wants when thinking of her mom, recently diagnosed. I don’t know if I will tell her. (We travel in different networks, and perhaps more hopefully, more hopefully than perhaps reasonable, I might be able to pull it off this deception for a long time. But is it lying? Is it wrong to appear to be the victory I am so clearly not?)

I have not told my mother that my cancer is progressing. I honestly do not plan to. She will get upset and she will become smothering. I need normalcy. I have every intention of lying to her for as long as I can and as long as it keeps our relationship what I want it to be. (And I hate that maintaining this lie is at odds with the catharsis publishing this post.)  (Is it wrong to lie to those you love to keep your interactions the tone you find comfortable?)

In the end, I am comfortable in the decisions I make. (Originally the prior sentence was "I am exceptionally comfortable with the decisions I make." But this was clearly a lie. If I was truly comfortable, there would be no post.) 

But I can rationalize it all. (Is it wrong for me to rationalize these "transgressions?")

There is no Book of Etiquette and Morality for the Dying.

And quite frankly, if there was, it should only be one sentence: “Do what you need to do and fuck anything/everything else. #FuckCancer.”

Stupid: Everything that led to this post. Just, all of it.
Cool: The heroes who support me and hopefully, oh so hopefully, the medicine that makes this post seem wildly premature.

 

The Real Fear of Going Home (Ancona, Italy, January 16, 2016)

After being diagnosis with metastatic breast cancer (aka this time it is going to kill me), I spent a couple of weeks looking at my options… and then carried on with life which meant flying (chemotherapy packed) to the tropical nation of Seychelles for a month long business trip.

On my way home I swung through Italy.

Now, as I prepare to return home, I realize, I am terrified of returning home.

Seychelles was long days of work, very few less than ten hours a day. And Seychelles was days of not talking about cancer.

My friend Kristin says I am not exactly ignoring cancer, because I am taking the shots and the medication.

But I realize for the most part, I have been hiding from it.

On Wednesday, I will have a nephew. My family's first of the next generation. A tearful reminder to me, that I will never have children.

On Thursday, I will have blood tests which will tell me how well this treatment is working…. How I am doing on buying time.

I may be alone in a hotel room in Italy, with not a friend nearby… but at least cancer is a world away.

That said, I could really use a friend like nothing else in this world, because.

I am terrified to go home.

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.”

Becoming a Woman, Again, After Cancer (Seattle, September 25, 2015)

I stopped chemotherapy about a year ago.  Having been on that regiment for three some odd years… it took about six months for my body to wash all the residual toxins away, and trust me, I marked, in red, the day the effects were gone.

Aside from being furnace hot and never sleeping two continuous hours, I would have said that there were no side effects from the chemotherapy.

Superficially, I am now aware of many more physical side effects, from my slendering physique to the frequent compliments on my skin's glow.

But these are the fairly inconsequential. 

Having been off chemotherapy for nearly a year, I was categorically wrong on so many fronts about the side effects.  As I sit here, a tumultuous mess of emotions, I am aware of how emotionally castrated I was by the chemotherapy.  In some ways, this was exceptional. I was never terribly bothered. But on the other hand, like a depressive waking from a winter fog, the world is just so much more rich now. For the most part, this makes me seem a ridiculously happy person from the outside. I would say, it is actually pretty damn true to the depths of my core. But man, when I get upset, I feel like a two year old having a tantrum, beet red, face a splash of tears, snot dripping from my nose, trembling with over powering emotion. And I can see the irrationality. And I can feel the chemistry. And I am as confused by it from the inside as I am overpowered by its force.

The castration, for far too much information, was very physical as well. At thirty something, to effectively go through puberty for the second time in life, is a bizarre experience. I was sitting on the bus one day, feeling mentally uncomfortable and not able to figure out why. It was an experience I cannot properly describe.  Uncomfortable in my own skin.  The next day, I was reminded, this sensation… PMS.

After seven years of various forms of hormonal manipulation related to cancer, I got my period, unanticipated, clearly, for the first time in years, six months after stopping chemotherapy. Having fallen asleep at a platonic coworker’s, I completely saturated, like a slaughtered pig, his white linens.

While we pass at work, we have never spoken again.

Every girl has their pubescent accident story from her teenage years. Try it on when you are thirty something, your accident is about two pints of blood (well, it felt that way), the sheets were brand new white, and he is a platonic coworker.

I am startlingly willing to share, with the world, my mortification perhaps because, it seems alien to me. Perhaps it is just one of the funnier indignities gifted to me by cancer.

This whole being a woman thing, which I took a time out from for so many years, it is just fucking crazy.

I am batshit in love with this guy, from a distance, like a fourteen year old girl with posters on her bedroom walls.  It is the most absurd, distracting, intoxicating, biological magnetism. How on earth does anyone get anything done if they ever feel like this?

And this goes to something else I feel cancer took from me. While all my friends were pairing off and finding love, I was textbook interested, but I was not compelled or animalistically driven to it like I am now. I honestly question if I could fall in love when I was on chemotherapy. I really feel that love is a physiological ability, biological function, primal instinct, cellular attraction, an ephemeral, intangible sensation, that was simply amputated, like my breasts, or perhaps shed, like my hair.

No longer on chemotherapy, I know the world is the same place, but my experience of it is so much different.

Cool: On the right day, which is pretty much most days, the joys of biology when happy, or in love, or in bed….

Stupid: How on earth do you people get anything done with all these hormones in the way. Seriously!