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Tuesday, August 7, 2012

Top Ten Things Not to Say to Someone Who Has Just Gotten a Cancer Diagnosis. And Some Things to Say That Help.

Did you really just say that? 

I got some bad news the other day.

I then received more news, and it was even worse. Way worse.

And then the really bad news came in.

And then the floor fell out beneath me and I was holding on to the windowsills by my fingernails.

Robin stood by me.

A few days in, we were sitting in yet another hospital waiting room. She studied my face. "You're not eating," she observed. "You need to eat. Eat something. I want to see you eat. What do you want? We'll get it."

A few days later I realized I could no longer do my daily regimen of sit-ups on a bare, wooden floor. I needed a pad under me.

I'm a big-boned gal. I love my food. I went a couple of weeks without eating.

At one point, a hospital bureaucrat with the personality of liquid bleach being shot from a fire hose demanded my social security number. She demanded this in a thick New Jersey accent.

Every American my age knows her social security number by heart.

I stared at the woman.

She made that clicking sound with the tip of her tongue on the roof of her mouth and moved on to other questions, but kept coming back to the SSN. For a good fifteen minutes, I could not give her my social security number. She rolled her eyes at her co-workers staffing nearby cubicles, "Get a load of THIS one. They just WANT to ruin our day!"

I finally remembered I had a form – I had many forms – in my backpack. I pulled it out. My social security number was on the form. I gave it to her.

I will never be the same. After this news, I will never be the same.

***

I'm a verbal person. As it happens, even this new me is verbal. I need to talk about this. I study how others are talking about this. Even cancer, it seems, will be, for me, largely, a verbal experience.

I keep thinking about things that people have said to me that have really boggled my mind. Because I'm a verbal person, I want to blog about these statements.

You need to understand – I'm not trashing the people who said these things to me. They are all in my life for a reason, and I love them all.

Life is complicated. One of the people who said one of the worst things also said one of the best things.

***

Anyway. Cancer.

The boogeyman in the closet. I've been hiding all my life.

I'm from one of those families.

My Aunt Tetka died at 101. She was old when I was born, and she was old when I got my first gray hairs. She never exercised, ate, in my presence, only pastries served on doilies and sprinkled with powdered sugar, and never learned to speak English, the language of the country she moved to decades before I was born. My great grandfather, Gregor Cerno, ate smoked bacon fat and raw hot peppers, drank copious amounts of slivovice, and lived to be ninety-something, depending on whom you asked.

My grandmother, on the other hand, Mary Cernova Kerekova, who was an unforgettable presence in my childhood, died before I was born. I write about her in the essay "Silence." Grandma had cancer. Like my brother. My uncle. My aunt. My mother. My father. My sister. Me.

Grandma. Second from right. 
This is not my first time to the rodeo.

Mike Manning was tall and straight and brilliant. You should have heard of him by now – his unique contributions to math or science or journalism or politics.

Mike and I played together.

I vividly remember, being, what, 14 years old? Standing in St. Francis church during Mike Manning's funeral, asking myself, over and over, over and over, how can it be that Mike Manning is dead, and I am alive? He was so much cooler than I. Taller, stronger, smarter. Hodgkin's Lymphoma: The only fact in his beautiful young life that mattered, in the end.

After my brother Phil was killed in a car accident on my birthday, I really had this sense of "Phew. None of my other siblings will die for decades more."

My brother Mike Goska was studying to be a minister. Married, a son, a daughter on the way.

He knew, I think, and put off going to the hospital until the last minute.

I was a Peace Corp Volunteer in Nepal. This is how I got the news. I was teaching in a tiny settlement five days' walk from the nearest road. No running water, no electricity, no radio, no telegraph, no nuthin.

One night, I had a dream. A helicopter landed behind my house. Doctor Theresa, the Peace Corps doctor, my mother, and my sister got out of the helicopter. They walked up to me and said, "You have to come home. Someone is sick in the family."

The next morning I got out of bed, got my passport out of hiding, and told my headmaster that I would be leaving. He thought I was crazy. It was monsoon, I was at 7,000 feet, the trails were washing out and lush with terrestrial leeches. "I have to go," I said. When I finally got to Kathmandu and they showed me the telegram from the states, they wondered why I was not surprised.

Again, my brother Mike was studying to be a minister. He was surrounded by people who prayed. We all prayed. We prayed for a miracle. Mike was so young. His daughter, who would be named Lydia, was not yet born. His son Donald was just a toddler.

I don't know what happened to our prayers for my brother Mike.

***

My friend David Horne was an Eagle Scout, a devout Christian, and a gay activist. That is how we met. I was an active supporter of gay rights. I write about David in "Save Send Delete," pages 224-225.

One afternoon David and I watched "Bent" together in his home, which was actually a refurbished log cabin. Then we went downtown for falafels. He said he hadn't been feeling well lately. Like an idiot, I lectured him about his atrocious, Midwestern eating habits. It wasn't his eating habits. It was leukemia. He phoned me one day after he'd gone blind. I wanted to pull him back from the abyss, but I could not.

Later that same year I held my mother in my arms as she breathed her last breaths.

And then Rabbi Laurie Skopitz … I write about Laurie here.

The Jews have a song, "Dayenu." Enough. When it is enough, God?

***

And I've been waylaid by some monsters myself.

No, not cancer.

Worse.

Ha! How's that for one-up-man-ship?

It's a long story. After a very ugly event on the campus of Indiana University, I was stricken with an inner ear disorder.

Inner ear disorders are "orphan disorders" with little research, little funding, little attention, and no publicity. Symptoms vary. One woman I "met" online walk up one morning stone deaf. But, unlike me, she never vomited.

For me: for years I vomited uncontrollably. I was intermittently, completely, paralyzed. Not only could I not move, I could not think about moving. Thoughts of movement brought on more vomiting. I vomited so much I needed intravenous hydration. Nystagmus, an involuntary eye spasm, rendered me close to blind. I couldn't read, couldn't recognize my own face in a mirror.

I had "good days" when I could walk around outside, read, and eat. I couldn't predict when those good days would occur. Because I did have those good days, I was denied SSDI.

I lost weight. Unable, on my best days, to move quickly or place my head below my heart, I lost muscle tone. I lost all my friends. I lost my life savings. I lost any hope for any kind of a future.

I traveled from doctor to doctor, in three states. Surgeons operated three times; the first two were experimental; the last pro bono surgery by Richard T. Miyamoto at Riley Children's Hospital "killed" my ear.

I knew that surgery worked when I went the next week without vomiting.

There was no welcoming committee to ease me back into normal life after that surgery. I moved into an empty apartment and had to beg friends and charitable agencies for a spaghetti strainer, a chair. I lived in that apartment for a year without a telephone, a computer, a television, heat or hot water. It was Bloomington's worst winter. There was ice inside my windows. That's re-entry after a catastrophic illness when you have only yourself to rely on.

I am still deaf in the affected ear. I still use a cane to walk, for balance. Otherwise, I'm fine. I got my body back. I lift weights and do sit-ups and walk miles every day and enjoy it, knowing how hideous it is to be inside of a body and to be unable to move.

In other words, no, I don't need this cancer diagnosis to teach me what a miracle a healthy human body is, or what it is to be poor, or to be a medical guinea pig.

What is God thinking?

When will I have been educated … or punished … or disciplined … or life experienced … enough?

***

So, as I said, I need to talk about this, and I've tried, and I've hit some snags in my attempt to communicate, and I wanted to blog about that. So, here they are. The top ten things not to say to someone who has just gotten a cancer diagnosis:

1.) "The problem: you are Catholic."

I've been Catholic all my life. I'm used to anti-Catholicism. Blaming the Vatican for cancer is a new one on me, though.

2.) "Your religion stinks."

I can't talk about my diagnosis without talking about my faith. And even so much as mentioning my faith is an invite to some to point out that Jesus was a phony charlatan who just wanted sex with his followers, like Mary Magdalene, and I am a self-righteous idiot and hypocrite for believing in him in lieu of any other "desert nomad."

Yes, yes, the people who jumped at the chance to say this to me shortly after learning of my diagnosis are my friends, they do care about me and they are good people. I could theorize for hours about why people say things like this at moments like this, but I don't want this blog post to become a thousand pages long.

3.) "My religion is better than yours, and IF YOU DON'T WANT TO DIE OF CANCER, use this opportunity to start practicing my religion now!"

Interestingly enough, this email did not come from my Jehovah's Witness friend. She has been discrete and has not used cancer to try to get me to become a JW. Although she uses every other opportunity.

No, this message came from a friend who has converted to an Eastern religion. One that is better than mine. One that if I practiced it, I wouldn't be in this fix! Om and namaste and lotus blossoms and all that.

4.) "I'm an old-timer. I know the system like the back of my hand. Just do what I say, kid, and everything will be hunky dory."

I've been poor all my life. I'm the very worst kind of poor to be in America – an educated, articulate, American-born, white, working woman with no addictions, no arrest records, no child, and who works on the books. The conjurers of salvific government programs hate us. Again, topic for a whole book.

In other words, *I* know the system. I know what it is to fight for charity care in a hospital and be told that it isn't for "people like you. It's for people who are really poor."

There is a subset of know-it-alls out there who are convinced that they have the system figured out, and whenever I broach the topic of what it's like to be told, oh, say, that I have an illness that might kill me and that I can't get health care for that, these self-identified experts jump up eagerly and insist that they know. They know the form. They know the bureaucrat. They know the agency. They know the process. They don't, of course, but they do know how to stop any productive discourse dead in its tracks.

5.) "I KNOW someone who had EXACTLY what YOU HAVE and she just DIED a long, slow, horrible, lingering death!"

The person who said this to me had no clue what my diagnosis was.

6.) "I KNOW someone who had EXACTLY what YOU HAVE and it was a snap! It's a really easy one to cure! It's NOTHING!"

The person who said this to me had no clue what my diagnosis was.

7.) "Tell me EXACTLY what they are going to REMOVE and what procedure they will be using and how long the surgery will take and whether it will be chemo or radiation and what PERCENTAGE CHANCE they give you!"

Watch an episode of the old TV show E.R. But don't ask me questions like this. This is medical porn.

8.) "You are not alone. No man is an island."

Two problems: I am. I have two friends who are being very good, but they are friends, and their first priorities are their own families. They owe me nothing. I know what it is to do something like this alone, and it's not pretty. And these statements are clichés.

9.) Disaster movie emails.

How to describe these – they are their own genre.

One of my friends, a man I do love, and have much reason to be grateful to, all of a sudden, after I broke the news to him, started telling me about all these disasters in his life, including his sister's health problems. Funny thing – I've known him for seventeen years. I didn't even know he had a sister. He's never talked about her before.

A woman I barely know sent me a three thousand word email – that's a very long email – detailing every bad thing that had ever happened to her in her life. House fires. Runaway pets. Eczema. Psoriasis. A date who didn't show up for the prom. (I love this woman. Good woman. Weird email.)

I got quite a few of these communications. This was at a time when I was still staring into space, unable to eat, unable to remember my own social security number. People were drowning me in their own disaster news, news they felt no pressing need to write me about the very week before I got the diagnosis.

10.) Unsolicited advice.

No need to explain this one.

11.) Quack websites. New Age beliefs. Conspiracy Theories. Cures advertised on late night programs about alien abductions. What have you got to lose?

***

I've heard some good things. Here they are:

1.) Robin said, "Helping you is helpful to me."

That was the single best thing anyone said to me in this. Robin knows I am a save-the-world type, at least in my fantasies, and it is killing me to be so needy. She used my own psychological make-up to get me to accept much needed help from her. God bless her.

2.) "I'm here for the duration."

I reminded my friend Otto that death from cancer, should it come to that, is not pretty. He insisted he'd stick around through the baldness and decay I know all too well to be prominent menu items.

3.) "I'm praying for you."

More grateful than I can say to facebook friends who are praying for me. I got through one especially dreaded test by picturing their faces, saying their names, blessing them, and thanking God for them. Just that meditation process got me through a test I never thought I'd be able to complete.

I am very grateful to the citizens of Markowa who will be offering up a mass for me in September. I spoke in Markowa, Poland, last summer.

I "met" a lovely woman online. Her name is Claire Bateman and she is a poet. She told me she'd pray for me, as did others, and that means a great deal to me. Claire sent me a photo of a candle she'd lit for me. I cherished that photo and clung to that image to get through that day's tests.

Photo by Claire Bateman

4.) "You have affected my life."

This came from a complete stranger, a man who found and read "Save Send Delete." He sent me one of the most beautiful emails I've ever read. It was genuinely artistic photo of his sons, and a note on how reading "Save Send Delete" had had a positive impact on him, and, by extension, on his family. That is the kind of validation that makes one strong in the face of death. He encouraged me to live, though, so I could write more. That is the kind of prod that makes you want to march forward, in spite of it all.

5.) "I will clean your house and bring you food."

Thank you to my fellow adjunct professor, Janice, who sent me this email even before she knew the complete diagnosis. She just intuited from a note that I dropped her that someone big was up, and she knew exactly what I feared and what I needed, and she jumped in. God bless her. She's a devout Catholic, by the way.

6.) "I will research for you and share what I discover." Several people did this. I remember, now, Michele, Christina, Eva, Robin, of course.

7.) "Would you like me to take you to Skylands?"

Skylands is my favorite place on earth. I don't have a car so I don't get there often. Chris, Antoinette, Otto, Robin, all offered to take me. I'd stay alive for that.

8.) "I know you just got some very bad news. I don't know how you are feeling. I don't know the best thing to say. I want to be supportive. I know it will probably be hard for you to ask for anything. Please know that I am here. I am standing by. I care. I have a car … a house … some free time next Tuesday … a brother who knows somebody who works in that hospital … No rush. Whenever you are ready, please know I am standing by. If you just want to sit next to me for a while and just breathe, we can do that. And when you are ready to ask for something, even if it's a bit odd, run it past me. If I can do it, I will."

9.) "I'll be okay."

It bothers me tremendously to think that what's happening to me might hurt the people I care about. I need to hear that – that they'll be okay, no matter what happens to me.

10.) Laughter.

I'm glad people still laugh at my demented sense of humor.

11.) "Someday your writing, including Save Send Delete, will be discovered."
Hey, one can dream.

12 comments:

  1. You're a beautiful person and an even more amazing writer. Faith is always important, and times like this can be trying, but you seem steadfast in your beliefs and that will help you through.

    I will pray for you, though we don't know one another. I will keep you in my mind during my meditations and ruminations and in my heart as well, where all the healing love tends to rest.

    Stay as strong as you can, stay as bright as you wish, and fight as much as possible. You've come this far, after all.

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  2. Anonymous, thank you for your lovely post, above.

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  3. Danusha, I read all your words from start to finish, all the while wanting to hug you, help you, do something to relieve your suffering and worries. And hoping I wasn't one of those people who said the wrong things, even though I probably did, for which I'm truly sorry. If only you lived closer, I would take you places and do things for you, just like Robin does. I only know you from our conversations on the internet, but it would be wonderful to know you in person. Your writing (what I have managed to read so far) is so engrossing, so powerful, so meaningful, you should have been "discovered" long ago, and you shouldn't have had a life of poverty. If there is anything that can be done from a distance (besides praying for you), please don't be shy to express your wishes. And yes, please stay strong, and please keep writing.

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  4. Hard to take it all in.
    Just letting you know you will be in my thoughts and prayers.

    MB

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  6. Remember what my mom said after her two cancers: Optimism is a crazy man's mother.

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  7. Hi, John. You posted twice and I'm guessing you wanted the second post to appear so I deleted the first post. I hope I have that correct.

    So ... I hope you're not saying I should not be optimistic?

    Or ... ???

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  8. Danusha, I think you are an amazing writer and talent. I think people really don't know what to say to someone with cancer. Its difficult, because each person is different. I do know that God loves you and please never be ashamed of your Catholic faith or standing up for it. There have been some truly saintly and amazing people who were of the faith and they have taught us alot about forgiving those who insult us. i personally think that Jesus may- could have been married to Mary Magdalene, however my faith in God does not depend on the outcome of this particular issue, for Mary was very much derided as a prostitute when she was truly a princess. Jesus being married and having a wife that is revered as a queen has a certain quality to it that gives me a vision of feminine equality with the divine. I have a synchronicity story about Mary Magdalene, and it is a humdinger. Its because of this and many other of God's footprints that showed up in my life that I "know" God is present on this earth. There is no doubt for me.....because when I was at my most despairing, God lifted me up and his divine guidance was truly amazing. I shall keep you in my prayers, Danusha...

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  9. Danusha, I think many people don't know what to say when they hear that a friend is ill. Cancer has a horrible stigma in this society but is really a myriad of diseases. And some do very well, some not. I agree that the best thing is to say is to offer continued friendship and support. We are all social beings and need to know that we will not be alone. While I have never met you in person, I feel that I have met you through your writings. I will keep you in my thoughts.

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  10. Margaret, thank you.

    I agree that people don't know what to say; I implicate myself in the above blog post, and in "Save Send Delete." I really dropped the ball with my friend David Horne, and I did have to apologize to him and make peace with him after he passed away, and I do believe he sent me a sign from heaven that he forgave me. yes, i really believe stuff like that.

    Thank you very much for offering friendship and support.

    It's good to hear at a time like this.

    Thank you!

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