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

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5 thoughts on “Riding Cancer Trains and Cancer Buses (but without BRCA and Triple Negative Breast Cancer)

  1. Powerful post! Amazing journey. Discrimination comes in many forms and hurts in whatever form. As a nurse, I see that cancer sometimes is the great equalizer. It respects no one. Sorry that has not been the case. To deal with that plus other issues is a huge load. So sorry you both have had to deal with two things at once. Your words will help many others. Keep writing.

  2. I think I didn’t like being discriminated against because I “wasn’t Jewish enough” at a particular University I attended which was statistically about 73% Jewish at the time. My name didn’t exactly fit all the rigorous criteria, but almost, of the Jewish name game at “Jewish U” in the Southern Midwest. But it goes great with Knishes in Miami, let me tell you… Many of my Yiddish-a friends made smarmy remarks in my presence regarding my naturally blonde hair and green eyes, slim lithe body, freckled pert nose and somewhat “Protestant” religion. They talked about food and keeping Kosher while I talked about art and keeping quiet. Ellen and Mackie tortured me knowing I was in love with Rubins while they passioned Rubinstein. I ate ham from a picnic basket while they chewed hard on Rabbi’s brisket. But we were friends and to this day, Madam Weisman and I play. She’s been my true friend since Orientation in 1965 because we sat together on the bus, as our names were only one letter different. Therefore, she assumed I was Jewish – – the only one who did. And as it turned out, the only person who really didn’t give a flying fig. So, I was diagnosed with BRCA the year her sister died and then I got a gene test since I might have THE GENE. I may be an Ashkenazic Jewis. I had known my entire college career that I was of Jewish heritage. Fortunately, knowing that, the playing field was even and I wasn’t hurt. Now I was going to find out just HOW Jewish…
    What do I think? I think every 18-year-old should have his/her blood type, SS#, birthdate, religious preference, sexual orientation, last bowel movement (erasable ink), and shoe size written on the left forearm like a war camp survivor should there be any mistake this is a society of freedom from binding thought. Now there’s an oxymoronic thought which begs forgiveness! What do YOU think? — JWK, MSEd, BSW.

    1. Well. Jan, my Yiddisha kup. As my grandmother Sylvia Sher Rothman used to say, “oy, let me see that punim. Look at her – goh-jus! Ach” grabbing my cheeks in one hand, so I looked like a fish. So many memories and things I cannot explain – she talked -a lot. Then she yelled on and on with a New York Jewish Bronx accent. On the other side, the Kaminsky side, the rich side, is from Brooklyn. On the side, like mustard or relish, where the cantor for who I am named tumbled from a boat onto Ellis island and met his fifth and last wife. The father of my father’s father – and I was supposed to be a no BRCA boy. They argued for two weeks over my name – I was supposed to be growing a penis for a bris – but the pen is mightier isn’t it? – for a girl it is anyway. As such I think we are all melted into the stickiest pot of garbage that a melting pot can produce and it’s hot in here. But I think if only 5% of all – ALL – cancer is genetic, then how risky without a trigger to pull are any mutating genes at all? I think I’m going to do a little research. Perhaps what’s at the root of all Jewish cancers are guilt? Protestant ham eating Miami-hailing social working educator who really could use a knish. I’d kiss trump for a real knish, a REAL BAGEL WITH REAL WHITEFISH (a chub) and really good deli. Any real deli which I haven’t partaken a bite of in so long I may no longer even be a Jew anymore.

      You’re lucky to have that friend from the bus. I’m no longer in touch with the girls I grew up with. I moved to California and you’d think I moved to Jupiter (not flah RIH DA). No one from my family believes I have cancer. I wasn’t told about my own no omg mother’s death by anyone and had no closure because no one felt I had the right to mourn. She’d lost it from dementia, which soon spiraled inti full blown Alzheimer’s disease when my younger brother and his morbidly obese oopp9owife – talking about non-kosher food for thought – that he’d have to pay the estate back the 35k my mother loaned him to buy a house in Tampa. Disgusting human who will not allow a person to see her as my breas cancer might upset her – never had I planned to tell her. He told my family l looked so badly and lost so much weight because I was a drug addict and they chose to believe him. Not one of my blood relatives speak to me or even check on me as a result, and his wife even said I deserved cancer if I even had it. I’m hurt but I’m past the worst of it. My plan is to go visit my mom’s grave in north ft laudederdale in the next 4-8 months and try to release The last of my negative feelings and Kiltz and say goodbye to her in my own way. I will have my own service for her there. She told me many times as I was growing up and in my adult years that she did not want to be buried. My brother and her sister my aunt buried her. I tried to stop it but it was too late as I only knew about her desk when it was two late for me to actually fly from California to Miami. My ex-husband sent me a text message saying “my condolences” and I replied “for what.” He called me and told me what happened, and that was how I found out she had died. Well that’s the story for now I hope this gives you a sense into some of my sadness some of my remorse and soulfullness behind my poetry.

      Much love.
      It’s beshert that we met – I was born the year you started college and most of my closest friends are in their 60s and 70s. The people in my demographic have no appetite for mortality…

    2. Well. Jan, my Yiddisha kup. As my grandmother Sylvia Sher Rothman used to say, “oy, let me see that punim. Look at her – goh-jus! Ach” grabbing my cheeks in one hand, so I looked like a fish. So many memories and things I cannot explain – she talked -a lot. Then she yelled on and on with a New York Jewish Bronx accent. On the other side, the Kaminsky side, the rich side, is from Brooklyn. On the side, like mustard or relish, where the cantor for who I am named tumbled from a boat onto Ellis island and met his fifth and last wife. The father of my father’s father – and I was supposed to be a no BRCA boy. They argued for two weeks over my name – I was supposed to be growing a penis for a bris – but the pen is mightier isn’t it? – for a girl it is anyway. As such I think we are all melted into the stickiest pot of garbage that a melting pot can produce and it’s hot in here. But I think if only 5% of all – ALL – cancer is genetic, then how risky without a trigger to pull are any mutating genes at all? I think I’m going to do a little research. Perhaps what’s at the root of all Jewish cancers are guilt? Protestant ham eating Miami-hailing social working educator who really could use a knish. I’d kiss trump for a real knish, a REAL BAGEL WITH REAL WHITEFISH (a chub) and really good deli. Any real deli which I haven’t partaken a bite of in so long I may no longer even be a Jew anymore.

      You’re lucky to have that friend from the bus. I’m no longer in touch with the girls I grew up with. I moved to California and you’d think I moved to Jupiter (not flah RIH DA). No one from my family believes I have cancer. I wasn’t told about my own mother’s death by anyone and had no closure because i was not able to make it in time to Florida from California. These are the trials of having cancer and not being in sight – people say and believe the silliest things and its so much easier to not believe something sad than to believe something outrageous. I agree that people should be tested not as a compulsory action but out of choice. If we force people to expose themselves especially if they’re not hurting anyone such as gender identification and sexual preference we are no better than a dictatorship or as the nazis were – too easy to round people up and marginalize them for matters that pertain to their privacy.

  3. Hi Ilene,

    So powerful. As is Megsie’s post. Assumptions are so prevalent. And often quite wrong and potentially harmful as well. We are indeed so much more than checked off boxes on a form. x

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