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!

Santa Barbara, Little But World Class (Written in Santa Barbara, June 21, 2015. Posted from Seattle, June 26th, 2015)

Arguably, Santa Barbara is my home. I say arguably because it is not where I grew up, and it is not where I live, but it is probably the single place I have spent the most time in my life. Santa Barbara is small, but world class. After my latest project, in Europe for three plus months, I came home for the tail end of what I call purple season, the May Jacaranda bloom (pictured right). Quickly thereafter was I Madonnari, billed as an Italian Street painting festival. It is a small, but world class, fleeting, extraordinary art exhibit drawn, in chalk, on the pavement outside the mission, erased by time, a mere memory weeks later.  Photo (left) early morning before the crowds and artists arrive. Photo (right) in the midday sun, as the artists work and people admire. The skillful, popping, 3-D nature of this chalk drawing on the pavement is hard to capture in a photo. Photo on Saturday (left) and then on Sunday (right) as the artist worked. Most recently, yesterday, the Solstice Parade, a glorious celebration of summer mixing Scandinavian traditions of MidSommer, with Mardi Gras exuberance, feathered grandeur and swing, some Halloween weird, a sneak-peak of Burning Man oddities, a liberal sprinkling childlike happiness, and some amazing creativity. Nonetheless, coming home this time, I am vaguely aware, somewhere, in my stomach, Santa Barbara is no longer home. This strikingly hit home by happening upon, on that same afternoon, the article “What It’s Like WhenYour Hometown No Longer Feels like It’s Your Home” by an organization (Girl Gone International) for and by women who travel extensively. The reason I can write about the above Santa Barbara experience with such delightful intrigue, is because it has transitioned from the common place experience of my hometown, to the foreign experience of the new. I have a myriad of mixed emotions about Santa Barbara no longer being home. The first and most obvious question is, if Santa Barbara is not home, where is? < This line intentionally left blank. > I don’t have an answer for that. Home is where the heart is, right? My heart is in Malmo Sweden (Sandra), Ljubljana  Slovenia (Matej), scattered across Switzerland (Pia, Louis, Michael, Michael, Dan), Edinburgh Scotland (Ruth), on ships far and wide (with so many people), New Bern North Carolina (PJ and Kevin),  New Hampshire, Seattle, …. The list is long. But, with surprise, I notice, I ended the paragraph and did not think to put Santa Barbara on that list. I suppose that says a great deal. Santa Barbara is small, and world class. I would know, as a tourist who has been a lot of places. I would know, as a tourist. Cool: Santa Barbara Stupid: The odd, albeit mild, discomfort associated with not really knowing where home is. Santa Barbara, from the air, as I flew away on June 25th.

A random collage of purple trees from around the city. Scenes of I Madonnari.

Turkish Tulips and Transient Tribes

The tulips are lovely this time of year in Istanbul. Don’t ask me how I know this. I am not really sure. I know I have been here at this time of year, sometime in the past, but I could not tell you when or in what year.

This project is coming to an end, the launching of another ship, after a grueling 30 days, many exceeded 16 working hours.

The last few hours I have been alone, for the first time in weeks. It is startling in it contrast. It’s quiet, deafeningly, loudly in some strange way, quiet.

No one calling, no one emailing, no one knocking, no one speeding up to walk next to me as a transit from one place to the next, no skype messages, no text messages, no PA announcements, no one “Can I have just a minute?”

I am reminded, by this project, both of lure of working cruise ships and its alarmingly precarious fulcrum quality, a peak between something I thoroughly enjoy, like an addiction, and something more akin to incarceration.

Today, the majority of my team went home. The one that sang at dinner, the stern mother hen, the silent one, the one with the childlike curiosity of one who has never really traveled, the one that did impressions of the lighting in the cabins (HYSTERICALLY), the brother I never had. The Brit and the one with the completely out of place southern drawl let yesterday.

And now it is quiet.

One of the reasons I loved working cruise ships is because it was a lot like college. You live, work and spend every waking moment with your friends.  The comradery and common experience, despite almost literally world away cultural backgrounds, speaks to the fundamental need and joy of being part of a tribe.

One of the reasons I left, is that strong tribal bond is as intangible and consistent as the fog. Sometimes it is there, wonderful, and makes the ridiculous hours, and sometimes miserable conditions, the stage dressing of later warm stories. Sometimes that bond is allusive; you can see it in others and not feel it yourself. Sometimes it just isn't there.

I left cruise life, when month after month, it became apparent, that it was completely allusive to me.

The truth is, it’s the people. I used to always say there was a conservation law on cruise ships, the conservation law of people who annoy me. At any given point in time, there was a crew member that drove me nuts. It was often a different person in any given contract and often different people within a single contract. But, there was always one crew member that drove me crazy.

Unfortunately, there was no conservation law for people I loved. Some contracts were great, with a ton of people I adored, who made me laugh, who I would stay up talking to until all hours of the night. But in the last few contracts, this was no longer the case.

As the majority of my team went home today, I am so strongly reminded how important the tribe is. While I still have friends onboard, the tribe has disbanded.

The tulips are lovely this time of year in Istanbul and the large pod of porpoises breaching the glass-flat water off the port side is calming.

Perhaps it is just the sudden contrast that made this shift so uncomfortable, but as sadistic as it is, I must admit, I would prefer the intense work and the tribe, to the quiet beauty of nature, if I am going to be bound in this tower of luxury, my prison.

Stupid: The mind numbing, sleep deprived, agonizing intense, rattled month preceding today.

Cool: That I honestly can say the team I worked with somehow made it incredible, almost enjoyable and worthwhile.  So blessed to have such wonderful colleagues.

Thank you Matej, Sabine, Dejan, Harry, Rok, other Dejan, Barry, Michael, Jasminka, Michele, Luka and Emilie. (25% Marko.).

And by extension, Michael, Uwe, Luca, Johann and Cookie Monster.

The team on go live at 1:00AM.

Hollowness In The Wake of Beauty (Ljubljana, March 6th, 2015)

I live a nomad’s life. In the last ten years, more years than not have included twenty or more countries, in a single year. It is March sixth and I have been to six countries already in 2015.

Tonight, graced by fabulous Alpine air, the full moon casts razor edge sharp shadows through the crisp perfect air which is both ephemerally nothing and tangibly, albeit vaguely sweet, like spring is just about to caress a wispy kiss across your lips. This city is magical, with its sixteenth century buildings and its castle standing sentry above.

My love for this city is entwined by an ache which is hard to explain. It is, in my opinion, one of the most incredible cities in the world, stunningly beautiful. The castle, rivers, centuries’ old buildings of fairy tale architecture, playful dragon statues hiding in plain sight throughout, surrounded by hills of thick trees and the optical illusion of both strangely far, and somehow seemingly so close, tall oh so white Alps slicing into the popping blue sky, how could anyone not love this city?

But love is a shared experience.

It is very hard to love in isolation.

Usually love refers to a relationship, to love another.

Sometimes love refers to an object, to love a book.

But here is the thing about loving a book, or any object, while the enjoyment of the object itself is tangible and could be considered love, the true joy is in sharing it with another.

I suspect these are my last few days in this city. I have so enjoyed its magic. And while I vaguely attempt to capture the shells of its essence, posting photos on Facebook, I have not really had the opportunity to share Ljubljana with anyone.

This experience feels entirely incomplete, hollow and empty. The display of an exquisite meal, without ever tasting it. Flat, like my photos, without the sounds of the distant church bells and the rustling leaves, the air so nothing in its purity as to be impossible to explain… the weather, oh my goodness so much weather… 

Fog (whispering through the trees, a twig breaks behind you, a mischievous sprite snickering?)  and rain (relentless like a heavy weight physically pressing down on your head) and snow (mythical and absolute in its purity) and sun (enriching the colors of everything, transforming the ordinary into extraordinary) and thunderstorms (overpowering, torrential, and then suddenly inexplicably gone, everything dry and hardly a memory of water an hour later) and this strange rib cage tugging, stretching,  stillness which expands your consciousness’ unity with the universe while being simultaneously wildly unsettling, triggering something in your animal subconscious that is also the root of every terrifying, pitch black,depth of night forest story.

It is impossible to capture Ljubljana in words and photos (and clearly I have tried).

And thus, it will forever be impossible for me to really share.

Cool: Palpably rich,  amazing Ljubljana.

Stupid: How something so tangibly rich, can still feel hollow.

Dedicated to Sandra Olsson whose perfect, though lamppost obsessed, company in Venice, Italy made the experience all the more delectable, fattening, and fabulous than had I walked the canals alone.

A California Girl in Slovenia Snow

Having spent most of my thirty some odd years in California, where it can be eighty degrees (27C) on Christmas day, I had never really seen snow until my February business trip to Ljubljana, Slovenia.

Unlike my colleagues, jaded after seeing and dealing with the logistics of snow falls like this multiple times a year for their entire lives, I was delighted and somewhat stupefied. 

Snow casts such a glorious and miraculous brush on the world. Words simply do not do it justice, hence the plethora of snowy included pictures, not a single one retouched. The extreme visual contrast of snow's shear whiteness against everything else is kind of mind blowing. It seems both the essence of nature and extremely unnatural at the same time. Add to the visual experience, the breathtaking silence it leaves in it wake, and I am entirely torn between feeling this is the world as it is supposed to be or perhaps there was a nuclear holocaust. 

My colleagues marveled at my wonder, more than the snow. "You are like an articulate four year old."

Snow, however, and its affects are extremely alien to me.

Thus, after several snowy days, a list came about.
----------------

Stupid California girl comments overheard in the Slovenian Office:


1. It’s so white! (Said in awe, repeatedly, ad nauseam)
2. Why is it lumpy?
3. There is so much of it.
4. It is so slippery.
5. Why do you have to take it off the car, doesn't it fall off itself?
6. It’s so crunchy!
7. Doesn't it make you dizzy looking at it?
8. Now I understand why there are grates at front doors! (picture below)
9. What are snow tires?
10. I had no idea snow plows were soooo noisy.
11. I keep getting my boots stuck together! (My boots, newly purchases as I was completely unprepared, have lace hooks, which I seemed to magically get hooked to things, including each other.)
12. "I don't understand. Snow-on-the-beach?"
13. It is so clumpy. (After a few days when it started clumping on the trees rather than being evenly distributed.)

--------------------

California Girl Snow Incident 6th February 

Ljubljana Castle

I walk up to the castle almost every morning, just to prepare for the day. I take various trails. On February 6th, this California girl thinks “I’ll take the road less traveled,” while looking at a trail no one has taken since it snowed. “It’s is a nice trail, all fresh, untouched snow.”  

So I go walking up this trail, crunch, crunch, crunch.

Crunch, crunch, crunch.

Crunch, WOOSH!

California girl up to her hips in snow, says, "oh."

---------------------

On Snowmen

I do hope my Slovenian friends will forgive me, but  the Slovenians are not what I would call a warm people. This is my interpretation, rooted entirely in American cultural bias. The Slovenians do not often smile and their facial expression is affected by their language which actually requires their mouth be tight (compared to my California accent which is so open mouthed). You never see adults loud and ruckus, the way you see Americans at a bar on a Saturday night. And while their children do show more general enthusiasm than Slovenia adults, it is still more restrained than American children. 

All this to preface how utterly disjointed the widespread prevalence of creative, fun, happy snowmen seemed. It was charming. 

Ljubljana snow men, and these are just the ones I thought to talk picture of. They were seemingly everywhere. The mini guy on the right was hand-sized and on the railing outside a bar along the river.

Note the grate in front of the door.
These are everywhere in Slovenia.
I assume to get the snow off your boots.

I doubt there has been a carriage
in this area in decades, but just in case,
a sign indicating bikes yes, carriages no.

This fairly inconspicuous picture was taken for
the shadow of the tree on the house.

This building facade has nothing behind it,
but the glorious winter wonderland seen through the window frame.

Evening along the river front, with the castle above.

Evening along the river.

Stupid: Through years of exposure and logistical annoyances, that the mysticism of snow can be forgotten.
Cool: The amazing mysticism of snow, through the eyes of someone who has never seen it before. 

This post is dedicated to Luka Budin who nudged me toward blog writing again.