Please allow me to share a current meditation with you.

In quiet moments, I sit relaxed listening to the fireplace: the sizzle of the wood and the clicking of the cast iron as it expands with the rising temperature, the energy coaxing a well timed 1:4 beat in the background for my chant. Sometimes I may whisper the words to myself and other times spoken only to myself in my mind.

Sometimes I’m still or others I rock or sway gently side to side or front to back. All the while it’s important to push my thoughts out from my mind – I use an imaginary hand to shoo them away like flies on a picnic blanket. No violence, just a helpful movement of the pests so concentration on the words of the meditation can rise like the sun enlightening my mind…

All things in time, all for the reasons on which my life tumbles and turns to the songs of the spheres. Remind me as I am a human being, the universe tells me when I need to know: all is well. All is well.

Riding Cancer Trains and Cancer Buses (but without BRCA and Triple Negative Breast Cancer)

It’s ironic that another metastatic breast cancer thriver and I share a very similar blog title: The Cancer Train by Warrior Megsie. Underscored by assumptions on how we look and how we may die someday, hopefully far out in the future rather than statistically closer to today. We know too well emotional collateral damage of both cancer and of discrimination far better than we do. This awareness is highlighted in no small part due to the assumptions people make about the brands of cancer we both have. She’s not triple negative because she’s African American and I’m not BRCA because I’m an Ashkenazic Jew.

Parallel Tracks

My blood boiled as I read Megsie’s recent post reflecting on breast cancer and Black History Month; I relate to her emotionally and on some very deeply personal levels. Being a Jewish woman I cannot count the number of times I’ve had to check the stupid box on every cancer-related doctor’s office, charitable organization, research report, or other form denoting that I am of Ashkenazic Jewish dissent. I don’t have cancer caused by the BRCA gene men I’m not a carrier either according to my recent genetic testing.

Yet time and time again I am asked, and time and time again that box gets checked on those countless of forms. My descent actually has nothing to do with my cancer, which was probably environmental in origination like approximately 95% of all cancers including breast cancer. I was diagnosed de novo stage four and given the look upon the surgical oncologist’s face, when he delivered my diagnosis after I’d checking that box, “yes” I may as well have checked a box named, “because you’re a Jewish woman, you should’ve known better.”

But my possible cause doesn’t show per se on the outside or in the color of my skin. I’m not assumed unintelligent enough to understand, as Megsie has been made to feel, that because she’s black, she’s triple negative. Megsie’s neither ignorant like I’m presumed to be nor is she triple negative as it turns out either, as I’m not a carrier of the BRCA gene.

Not in This House

As a child of an activist father, I was brought to understand that there was no difference in people for the color of their skin. It was what made them beautiful and to him, I was beautiful for my difference, and that difference was what made the world a better, more interesting place. There were never racial slurs used in my home and I would walk away from it or fight against it when those jokes or words were used. I was brought up on non-violence and taught that racism and sexism were forms of violence.

Thankfully my dad didn’t live to see “cancerism” – My father was in social work and was the director of the Haitian refugee center on 54th street in little Haiti, in Miami, Florida in the 1980’s. There I would visit him and couldn’t understand why those refugees who were clearly seeking asylum from a politically motivated dictatorship at that time under Baby Doc – as Papa Doc had died by then – and denied so it seemed for racially motivated reasons. Cubans were allowed in without much fanfare or being shoved into an INS holding pen to languish for months at a time. He and three attorneys helped thousands to find relief and safe harbor.

Not in My Country

Yet I never understood why the color of their skin made a difference to the country that invited:
“Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!”
The Colossus, the Statue of Liberty to whom my great grandparents came when fleeing certain death for being Russian Jews under a Stalinist regime should have welcomed upon our shores those that were persecuted and killed for reasons of difference of ideology. Or for no reason but the act of physical violence allowed by a military dictatorship not 70 years later.

In fact, just a few weeks ago my religion, though not apparent from the outside, went up against the antisemitic words of an ignorant white woman with regards to where I lived and “thank god I wasn’t trapped with the Jews inside” a gated community here where apparently all the Jews in the area are kept. But through all the antisemitism I’ve faced in my life, and there’s been many occasions that I’d rather forget, I have not had the color of my skin give away my difference. And that’s something I don’t know I can even imagine what that may feel like.

Except the “anticancerism” of looking at a few points in my journey as a cancer patient should. The long stares at my very thin body attached to a hat covered head with my port sticking out of my shirt, dark circles under my sleep lacking eyes. My pallor was almost the green of a healing bruise. People would back away from me in elevators and at a store thinking maybe cancer is contagious. As far as science based evidence shows, it’s not.

As I have been told I don’t look like I have stage 4 cancer I’ve been told I don’t look like a Jew. What do I look like then? I was told when I was first diagnosed “we don’t operate on people like you.” Like who? Since the Nurse Practionier who made this snotty statement could not have understood why I wanted my lumpectomy, which I eventually found a surgeon to perform, I can only just begin to understand how it must feel to be judged and felt to be made foolish, since my appearance doesn’t I’m immediately give me away.

Not in this body.

But my life long experience with anti-Semitism and now with people not believing I have cancer because of how I look (and those who want to blame it on my Jewish descent) give me a slight sense of the lifelong ugliness Megsie has been subjected to: adding metastatic cancer to life-long indiscriminate, heartless discrimination.

My heart is with her heart, as we struggle to regain the dignity of being a woman from the grips of cancer, from which both of us will eventually die. This never-normal again life weighs upon us enough without ignorant, racist and antisemetic commentary and assumptions about the origins and the genetic manifestations of our disease. Without a doubt, above all else we know that in the end, the enemy doesn’t just live within us, but it speaks to us from beyond who we see in the mirror each day.

Not in my wildest imagination!

May our paths continue to cross, and I only hope, become one when we can walk together for a long and beautiful life without fear of discrimination of any kind.

John Lennon’s Imagine sums up my sensibilities in this matter as well as anything I can think of:

Imagine there’s no heaven
It’s easy if you try
No hell below us
Above us only sky
Imagine all the people
Living for today (ah ah ah)
Imagine there’s no countries
It isn’t hard to do
Nothing to kill or die for
And no religion, too
Imagine all the people
Living life in peace
You may say that I’m a dreamer
But I’m not the only one
I hope someday you’ll join us
And the world will be as one
Imagine no possessions
I wonder if you can
No need for greed or hunger
A brotherhood of man
Imagine all the people
Sharing all the world
You may say that I’m a dreamer
But I’m not the only one
I hope someday you’ll join us
And the world will live as one

Absolutely Late, Lately: Adding up the Moment(s) of Terminal Cancer

Everyone’s got the right to question the respectfulness of someone who’s perpetually late. Or do they?

I recently commented on a blog post with regards to feeling disrespected by people who don’t respect his time because they cannot arrive on time. Ignorance of individual consideration for specific situations never whispered beneath his indignation. My question back to him: perhaps there’s a few reasons that have nothing at all to do with you at all. Some people have limitations and one of those may be effecting someone very close to you either now or in your future: people with metastatic cancer.

Time Stand Still

In several blog posts, I raise points about what changes with a metastatic breast cancer diagnosis. My self inquiry never ends with the conclusions of the posts. I still question the change from (t) time=unknown to t=0 (death=0) due to the incredible number of factors associated with our mortality. The factors are further confused by the many interpersonal relationships in our lives. It’s in those intersections between people one question stands out. It’s a question that no self respecting breast cancer blogger won’t eventually ask themselves publicly.

Probably more self deprecating than self respecting, looking back on my four years here on WordPress reveals a number of mentions of this particular affectation. The most well- meaning of us with metastatic breast cancer finds themselves running behind the clock more than we’d like. I think I may have come up with a couple of reasons, not excuses, as to why we’d get sent to the principal’s office for our tardiness.

1.”It takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!” (Lewis Carroll, Alices Adventures in Wonderland)

Most people enjoy the freedom to make plans. Normally everyone lives without having to think much about plans they make day to day, week to week, month to month, and year to year. With terminal cancer, one lives on less than 24 hour notice. If you have a diagnosis of MBC or another metastasized cancer, you’ve probably had plans for the the day, and for which you have had to send the dreaded text or make the embarrassing call to say, ” I’m sorry I can’t make it, ” or “I’ll be two hours late.”

Why? There’s no time to catch up with yourself, looking at the current moment wondering how I got here and wanting to drink in all of what’s surrounding me. I can’t quench a thirst that’s infinite yet has an absolute end somewhere in sight. Trying to grab ahold of everything I drop my minutes like rain in a thunderstorm and I cannot get them gathered back up around me into a reasonable explanation. Not a satisfying one to the party receiving my lame cancellation.

  1. Dear, dear! How queer everything is to-Day. And yesterday things went on just as usual.” (Ibid.)

Nothing being the same yet all things being equal, you’ll find out just how strange life can get in a split second. People disappear who you held dear and you’ll have no reason why. People who you never thought would come through in a pinch, do. And over the fullness of time new people will find a place in your life.

For me, many of those people are either ethereal online support friends, people who are older and for whom age has presented the question of death many times, people who have similar prognoses, and those who have also brushed up against death. Aside from my older friends and not knowing the lateness of my online friends, everyone else who has stayed the course with me forgives my lateness.

If the attention you have ran at a deficit prior to a cancer diagnosis, post diagnosis you’re probably in for a special treat. If you also suffer from fatigue, this seems like a dichotomy.

  1. We’ve no time to wash the things between whiles.” (Ibid.)

Theres now the phenomenal time travel that happens while I take entirely too long in the bathroom.

I spend hours on end with good reason in the brightest room in the house: the potty. I am engaged with the toilet straining against constipation, trying to stop it’s devilish alter ego – diarrhea, vomiting from chemo or any number of reasons, or for the more pleasurable bathing to relieve pain and taking time to relax and practice self care. Additionally finding better ways to wear my bizarre post chemo hair or to cover your my of hair; and, doing my makeup and drawing in missing eyebrows can take up hours of my life, however limited my time may be.

No one wants to look sick. But the less sick you look the more people doubt your level of illness. It’s a catch 22, but a fact.

  1. I forgot.

  2. I remember!

6.”Not all who wander are lost. If you don’t know where you’re going any road can take you there.” (Ibid.)

Wanting more time before it’s all over leads me down the rabbit hole into a place where I get lost. Lost inside a book, a song, a sunrise, a hug, a poem I’m writing, a memory, or a hope for something in a future that can at any moment be cut like a scene in an editors office from a films final print. I’m not lost on my path, though. It’s winding and it’s convoluted and full of time that I’ve somehow let slip by.

Measuring the importance of what I’m up to at one moment versus doing something pedantic like the dishes or the laundry. Writing my next sentence rather than sitting in the living room where my friends are and not having any reason to sit out there with four guys who love me and take me seriously although I’ve been late or a no show on many occasions to appointments with all of them.

One gets where I’m coming from because his constant pain keeps him pinned to the bed for days on end. One has attention deficit that’d knock any 5th grader off his Ritalin. One suffers the continual strain against depression. Ones seen too much to care about time as a concept but cares so much about the people in his life you can count on him in any situation with a one word text message, “help.”

  1. “The hurrier I go, the behinder I get.” (Ibid.)

I’ve come to realize it’s so simple. If those who cannot understand make a little room to fit the different senses of what time we have to expend and not take it so personally, they may even learn something. My life before cancer was so filled with the stress of time and being punctual I have to wonder if it didn’t contribute in some way to my metastatic diagnosis.

Perhaps if I slowed down a little I might have even noticed my physical changes prior to the disease falling like a domino into stage four. But I won’t look back. I’ll simply look at the moment and breathe in all the possibilities right now has to offer. And I hope your time with me was well spent if you have cancer or not. I certainly respect your time as you read and even comment on my blog. It’s your gift and I cherish it.