NEADed and Blessed

I am NEAD.
Yesterday after visiting with my oncologist at Stanford in San Jose and a week of repressed scanziety – I had a PET CT Scan last Wednesday and let’s just say my perky miss Cancer self was a little crabbed than usual. Dr. B entered the new room in the new facility where I receive the bulk of my oncology services, palliative care, infusions, and psychosocial assistance. He and my other physician enter through sliding doors behind the patient visitor rooms from a bustling scene of nurses, nurse practitioners, technicians, and I imagine a scene from the 1984 movie, Brazil by Terry Gilliam, of which film writer and critic Pauline Kael wrote:

It’s like…a nightmare comedy in which the comedy is just an aspect of the nightmarishness.

An apropos description of waiting to see the progress of stage four cancer, I might add. This time, though, good news. Nothing new, nothing grew and no evidence of active disease, or NEAD. I haven’t heard those words with respect to myself in the three years since my diagnosis. Others have reported NEAD to me on their progress. I put on my happy supportive persona that I drop like an unwanted boxed pre printed drug store Halloween costume, the kind my mother would buy for me when I was seven or eight years old. The kind that left me in tears desperately wanting to make my own instead.

Admittedly jealousy and self pity aren’t unusual emotions to go away from those communications with, at least for me. And I feel selfish for those emotionally shallow responses, which I keep private and away from judgement. If the best we #lifers can get is NED, no evidence of disease, I’m just one letter away at least for today. I am blessed to have access to world class care and the love of professionals, my few friends and the small yet effective support structure I’ve built around me as I might a scaffolding around my fickle health that shifts back and forth between hating my body and giving up to short reprieves to allow me a chance to feel free of the shackles of disease for just a while.

I am certainly blessed.

An Apache Blessing
May the sun bring you new energy by day,
May the moon softly restore you by night,
May the rain wash away your worries,
May the breeze blow new strength into your being.
May you walk gently through the world and know its beauty all the days of your life.

Liesl a sister writer and reader of this blog, shared these inspirationally soothing words and hoped they would help me and others navigating cancer. In this world it’s important to remember some of the dearest gifts bear no financial cost; the dollar value does not equate to the intrinsic value. Regardless of the devastating financial costs of cancer, equally as high are the devastatingly effective cost of truly feeling alive. Words of inspiration alleviate some painfully high costs, such as disappearing friendships or my ability to travel outside of the country on a whim. Although now these seem so massively cheap and unimportant.

Thank you Liesl for sharing this blessing, although you did not ask for any credit for doing so. I still want to thank you for reminding me of why I keep writing: relatable experiences lift the eyes of others facing or looking back on major shifts to our lives, not only Cancer.

Never, never, never give up.*

Christmas 2017

In the spirit of enjoying my newly found power of living in the now, not over thinking my tasks or decisions too much, I find a listing worthy of our time and  instead of sitting home asking what to do and not doing much together, we decide it may be fun to head out to see a film. We drop our imaginary swords after a weekend of tension and melancholy leading up to today, Christmas Day.  After purchasing our tickets online, we slipped out of the garage with plenty of time to spare and without the usual tension causing any arguments. So without a hitch, we went out with a playful, familiar affection for one another.

I didn’t allow myself to over think what needed doing, and it all got done. I found myself grateful and comfortable as we drove the quiet holiday road, listening to Mozart. I am more home focused  these days as my current course of chemotherapy has caused my blood cell counts to decline. Compounding this, The C suffers from depression thats holds him locked in our house nearly  every day, sleeping more than he’s awake.

But tonight once he finished dressing, he smelled clean and crisp and looked really handsome and I told him so.  With patience he waited for me downstairs while I took a deliciously steamy hot shower, one of life’s little delicacies and a major privilege of living in a first world country. I dressed up a little bit for him, but for myself mostly.  As someone with gender altering breast cancer, I recommend it highly. If you don’t really feel like getting out into the public, dressing up and putting on a little makeup can help your inside rise to the occasion outside.  It doesn’t hurt, whether you have hair or not, gained or lost weight, became flat chested or had reconstruction, try it. I find needed confidence and The C says, babe, you look really hot. Grin. Blush. He playfully, but gently so as not to mar my transluscent skin, pinches my ass and impish grins and says, what? as I squeal “oh, don’t!” And we get moving to the film.

The Darkest Hour starring Gary Oldman, who by the way OWNED the role of Churchill, engaged us from beginning to closing credits. Big new bonus feature, there’s now reserved seating recliners to kick back and put your feet up in, leather ones, too.  My inner marketeer assumes this phenomenon arose from a study about what makes people stay home instead of going to the theater to see a film. My conjecture: the study found people dreaded mortgage size snack bills and horribly unsanitary cloth-covered, ass numbing seating, originally designed for the Spanish Inquisition’s torture chambers. I can just see the PowerPoint presentation designed to sell the plush, button operated gluteus maxims warming cuddle machines to the theater chains’ operations management. (PowerPoint brain IS akin to chemo brain. I suffered both and the similarities are uncanny.)

Anyway,  The Darkest Hour covers Winston Churchill’s first month to his wartime appointed Prime Ministership governing Great Britain. He’s refused to lead his nation into a seriously precarious position of becoming like France in an act tantamount to surrender. Indeed, he would have accepted this fate had he allowed former PM and war cabinet member Chamberlain’s cowardly and first choice for the prime ministership, Lord Havilland to drive a country into a state that neither man was strong enough to lead. It turns out Chamberlain had only months to live having been diagnosed with cancer.  Me. Havilland drove his agenda as well as the King’s and persuaded Churchill to allow a seat at a table for one, at the so-called peace treaty with Hitler via Mussolini. History would be changed forever, and for not only Great Britain, but for all of Europe. There’s a surprise mini arc in the action that I’ll not give away but you’ll know why if you see the film.

Prime Minister Mr. Churchill, ravaged by lack of sleep and terrible indecision, finds himself unable to conjure the words for a speech he must deliver to the House of Commons regarding the decision to fight or to act with cowardice and surrender.  In an impulsive move, he leaves his chauffeured car running into the station and takes a train, something he’s never done, to Westminster and goes, so to speak underground. There he finds strength through listening to people’s emotional cries of “victory!” in the train car. Men and women who rightly are stunned by the presence of the PM and who represent a cross section of his constituency. Churchill initially went underground looking for a match to light his cigar, but emerged into the rainy day not only with the light for his oral fixation secured but enlightenment for his immanent oration. He finds answers he needs in that moment without over thinking his decision, in the hearts and minds of his beloved nation’s people.

I won’t spoil the ending, but we all know how the US for five long years allowed the punishing of our strongest world ally. Roosevelt got the blinders off very late in the war. Yet Churchill gave many European people hope for a future not ruled by tyrants. Without the navy but with his inspiration his ability to launch an entire force of civilian boats, to rescue 300,000 troops – the entire British military force stranded on the coast of France – waiting for help from across the English Channel.  Those boats were not captained by soldiers, but by regular people brought together, finding strength and bravery from deep inside their hearts and souls. Such bravery exhibited on so many levels boggles the mind and I need more time to digest the strength employed by everyone involved from the King of England, to Churchill, to his wife, to his supporters, and to the boats men living up above the White Cliffs of Dover.

I get chills thinking of the scene. It’s not a film full of CGI or big blasts or comic superheroes or special effects. It’s all in a short time with small spaces containing big exhibits of strength and bravery. Churchill knew that bravery comes not only from a wellspring inside, but from the community with whom we share a common connection. In his case the whole of Britain, in my case a small subset of the blogosphere. 

I know I represent a small subset who communicate via blogs. Here I find the brave and the vulnerable and in turn, this frees me to shed my own fears.  When someone stumbles into a post or poem of mine, and finds my “confessions” supportive,  the support I need comes easily.

At the beginning of this circuitous confessional, I found strong brave ties to a man I never knew. My relatives emigrated to the United States via Ellis Island in New York.  I am here because my great grandparents had the forethought to safely move our families out of the USSR, away from the tyranny that would slaughter Jews by the hundreds of thousands. Because of their courage I never will know  the atrocities of a true bloody ground fought war on a grand scale or the ensuing post traumatic stress disorder of an entire nation.

But we all fight our own wars don’t we?

I feel like my body is a country, my cancer, Stalin and  Hitler (Shitler?), the ground troops like my immune system, and my spirit like Churchill himself. Never, never, never give up. Victory is the only option, cried Churchill to the House of Commons that afternoon. From that scene on a wide screen was another brave heart who imbued in my spirit the strength of the lion himself long gone to find the One universal truth. He showed us the wisdom to listen, not just orate beautiful monologues that drown out the strength of other men and women, be they big public figures or new mothers with babies or blue-collar bricklayers from London.

Or even the small voice of a blogger in Silicon Valley, echoing words into the great web of the unknown. Too much drama? Nah, #fuckcancer.

Bertrand Russell, Richard Feynman and Me

You’re correct – that’s not a picture of Bertrand Russell who wrote this 10 point view on teaching, it’s my meditation mentor Richard Feynman. In my den framed is the Apple Computer “Think Different” advertising campaign poster with Richard. When I am really in a bind, I look at his photograph and ask, what would you do, Dick? Eventually I figure it out and  if I test my conclusions and they are correct then go for it and keep trying  until a better answer comes to me.  He’s been a great mentor. 

Bert’s words below, however,  apply to teaching as well as more life experiences than I can think of – it, too, applies to how I view my own cancer education. I never wanted to be a cancer patient and I never wanted to be a stepmom, but now I am those things and more. 

So for your edification and for the high regard I place on pedagogical philosophy that’s orders above the ordinary, here you go:

1.  Do not feel absolutely certain of anything.

2.  Do not think it worth while to proceed by concealing evidence, for the evidence is sure to come to light.

3.  Never try to discourage thinking for you are sure to succeed.

4.  When you meet with opposition, even if it should be from your husband or your children, endeavor to overcome it by argument and not by authority, for a victory dependent upon authority is unreal and illusory.

5.  Have no respect for the authority of others, for there are always contrary authorities to be found.

6.  Do not use power to suppress opinions you think pernicious, for if you do the opinions will suppress you.

7.  Do not fear to be eccentric in opinion, for every opinion now accepted was once eccentric.

8.  Find more pleasure in intelligent dissent than in passive agreement, for, if you value intelligence as you should, the former implies a deeper agreement than the latter.

9.  Be scrupulously truthful, even if the truth is inconvenient, for it is more inconvenient when you try to conceal it.

10.  Do not feel envious of the happiness of those who live in a fool’s paradise, for only a fool will think that it is happiness.

Thank you Bert and Dick. You’re both very much alive with me every stinking day and I am better for both of your words still available to me when I’m having a crappy day.