Wednesday, May 04, 2016

Winning At Cancer, The Third Time Around (May 2, 2016, Somewhere over the Atlantic, westward bound)

Tulips in Rijeka.


It has been about five months since I was diagnosed with terminal cancer.

I am on a plane home on May 2, 2016, from where I was working in Europe. Facebook reminds me I am frequently on a trip home annually on May 2nd, an odd confluence of annual scheduling.

This year though, the flight is because I have cancer. 

The truth is coming this week. The truth will either be that treatment is working or treatment is not working. And the resultant information, a real read on my life expectancy.

Six  months ago, when I was diagnosed with cancer, I chose a treatment plan and promptly got on a plane to Seychelles, but not for the obvious reason, but rather to work. 
A seemingly endless afternoon in Kraljevica

I can’t imagine a better thing I could have done. Pick me up, put me 12 time zones, and 35 hours from cancer, to fill my days with challenging work, beautiful views and amazing people I love dearly. 

Many people talk about how cancer frees them. I have cancer twice before, and maybe the third time will be the charm because, this time it actually freed me to accept myself. 

The only thing I have ever really wanted in life, was love.

I wanted that crazy, gleeful, delightful, perpetual infatuation, where you smile at the thought of another, and which tears your core when you see the other in pain. That is all I have really ever wanted in life.
The bumpiness of the water is fish mouths
breaking the surface.

Unfortunately, unlike most of my pursuits in life, this is not something that can just be achieved by primarily by hard work, dedication and a dash of luck.

Love is something that is nearly all luck.

With death now nearer than I had ever expected, suddenly, while I desperately still want this incredible elusive soulmate, I now somewhat fear finding this person, because I know what the outcome will be, their pain in watching me die.

This person, who I don’t know, I love so much as to never want to cause them pain.

So with the search for them now detrimental to them and quite frankly a pain in the ass for me, the search is over.
The woods of Ljubljana

With death nearer than expected, I just don’t want to make the sacrifices, the bad dates, the time invested in online profiles, no more trying. Fuck it.  Wasted time on something that does not make me happy, for an uncertain payoff, and if it does pay off will actually cause them pain in the long run.

And that is where I found freedom. I no longer feel forced to take up a traditional lifestyle, being in a single place day after day, week after week. I am now free to be in a different country every day if I like, because I am not chasing the siren call of love.

I am now free to work 18 hours a day if I feel like it, because I have decided to give up the love pursuit… so I no longer feel like I am giving something up to work. I like my work! I get to do it. Nothing sacrificed!
Sunrise in Kraljevica

Meanwhile, strangely, about a year ago, much to my surprise, I discovered my “type.” A little late in life, but oh well. I fell entirely in love with someone who could probably care about me less, but it would be hard. 

While of course I would want this to pan out differently, I am also strangely torn. Do I really want to put him through the torture of my dying. Maybe this is actually the best way. I have someone I love… but he will never get hurt. Twisted. Very twisted, I know. But what can you do?
Rovinj, notice the playful colors of the buildings

Now I am free to travel the world and work without feeling I am sacrificing a chance at love. This stupid persistent pursuit of ethereal love I chased my whole life. 

April was amazing. I have all but the signature on the biggest contract of my professional life. I got to spend several weeks in Croatia, darting down the coastline of impeccably maintained, ancient and medieval, cities, towns and fortresses cresting knolls and cliffs beside the Adriatic of ever changing blues to suit her mood, from teal blue playful refreshing summer to dark tumultuous and moody.

The ever pervasive umbrellas of Croatia,
with timelessness in the background. Split.
Croatia needs better marketing. It is so amazing and so little known. The old towns of incredibly narrow alleys, paved by amazing white nearly marble smooth stone, with tiny closet sized artisan shops selling artisan wares, soaps, and delights. Everything in such perfect repair that in a whirl it could be 1650 as much as it could 2016.  Many of the buildings painted in rich Disneyland colors I find so surprising and pervasive in the former eastern bloc. Walk along the water front and you see schools of fish disturbing the often mirror still water. I got there at the pinnacle of tulip season and glided into dripping wisteria.

There is a simplicity born of easy living. Food abundant, weather never particularly harsh, summer afternoons lasting almost half the day, thus it is natural to sit with friend under an umbrella as the day hardly shifts forward for hours. Time becomes less tangible both from the lack of clear reminders (no cars fit on the narrow streets, no flashing lights, nothing that says 2016 versus 1650) and the lengthy never ending days. Unlike in America where there is always an underlying thread pulling you to somewhere else you need to be, Croatia sings endless summer and now instead of later, and nowhere to be instead of obligation.
Time does not exist in this photo. Vis, Croatia

It is not that I projected this new found perspective on Croatia. Croatia imparted it on me.

While I had business reasons to, and truth be known, health reasons to go to, the real reason I absolutely made sure to dart up to Ljubljana was for my soul. It is a place that speaks to my soul, for reasons I struggle to understand, but I am blessed to receive as I do as many miles as I can through the forests. I wandered the woods and found there the unity with the universe that brings me back, time after time.

I worked my butt off. I saw people who make my soul so happy. 

So cancer the third time around… well it finally scored. It is both going to kill me and finally granted me the enlightenment that so many people achieve when faced with mortality.  Cancer finally granted me the blessing of today, and fuck planning for tomorrow. Croatia took the inroads made by cancer, and branded the focus on now on my being.
Stari Grad, means literally Old Town.
Founded roughly 384 BCE

So as I sit here, on a plane, my place of meditation throughout my life, my true spiritual home… because it is essentially nowhere but in between everywhere, I do fear the week ahead.

I told my dear friend that I fear this week. And she asked, in the nativity of the young and ignorant of the impending end, “Why bother knowing? Why bother have this test? Why not carry on” in ignorance implied.

Here is the thing, I have gotten a lot better at living in the last year. 

I want to live. I like living. I am going to fight to live and I am going to continue to fight to live.
These tests suck. Flying home from my jet setting to spend a week on blood tests, drinking barium sulfate, getting CTs, making decisions on how to continue to live, it all sucks. But I need this information to maximize my life span… so I do it.

I will have tests every three months precisely to evaluate how to live longer.  And every three months will come a week of fear and turmoil. And hopefully, so hopefully, they will become so routine and so numerous as to lose their impact, until the plot twist where I get hit by a bus instead. 

But I have what I call cancer PTSD. Thus far, I don’t have a very good track record with doctor’s visits.  So while I have been in very little pain in the last month, which is awesome, and hopefully correlates with treatment is working well, the fear is terrible. 
Fishing nets in Stari Grad, today or a thousand years ago.
So hard to tell.

I have flights booked back to Europe next week, to carry on, under the assumption I am well and no treatment changes are warranted. Of course I am afraid of dying, which is probably at least a few years away. Short term, I am dramatically afraid that the test results will make flying back to Europe inadvisable. I am afraid of this because I really want to go back to Europe and carry on with my work and meet up with more friends I love so dearly.

I am flying home today. “Home” which now I equate with having cancer and fear and discomfort and things being taken from me.

I can’t wait to be flying out next week. Flying out to work I equate with interesting projects, challenging/engaging work, time flying by, and friends… so many wonderful friends and such good times.

Stupid: It took three times and terminal cancer for me to focus on now and stop chasing what just might be unattainable. 

Cool: With the chase over, I don’t feel an ounce of guilt in having jet set so much in the last few months. 

I am no longer making a sacrifice. 

No caption required. Stari Grad, Croatia
I am just enjoying Croatia, and Italy, and Slovenia, and Kathi, and Crystal Els, and Matej, and Jaylene.  The forests of Slovenia. The narrow streets of Rovinj. Pizza in Kraljevica. Tulips in Rijeka. The amazing views of the drive from Rijeka to Pula. Seaside paths in Stari Grad and Vis. Amazing medieval nooks like Bakar. Restaurants in Venice which I happen upon time and time again which bring back such wonderful memories of Venice with Sandra. Signs in Venice which make me laugh. The stunning silence before a clap of thunder and a deluge along the Adriatic.  Cappuccino! Hilarious comments by friends, “Indian passports are so funny, and they smell like curry.” “McDonalds after sex is so awesome.” “Just give it to Christen.” (Which is an inside joke not worth the explanation.) “Mika, what will do without you?” “Mika, you are still here?”  And “Mika don’t go.”

Yes, I am still here! And god damn it, I am trying to stay!















Tuesday, February 23, 2016

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.


 

Saturday, January 16, 2016

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.