Tag Archives: cancer

A Free Lesson on How to Talk about Disease.

24 Jul

Hello.
I have some thoughts.

Recently we learned that Senator John McCain was diagnosed with glioblastoma, a very serious form of brain cancer. This was probably the first time a lot of people in this country heard about the seriousness of glioblastoma.

The first time I heard about it was 2014. I was in radiation for breast cancer and each morning, while waiting for my turn to be zapped, there was a report about a woman named Brittany Maynard who, at 29, wanted to die.

brittney

She was also diagnosed with glioblastoma and after traveling (ice climbing in Ecuador, kayaking in Patagonia and climbing to the summit of Mount Kilimanjaro) she relocated to Oregon to take advantage of their Death with Dignity Law and then ended her own life on Nov. 1.

Brittany was the subject of much conversation in the radiation waiting room at Methodist Hospital in Brooklyn. Not only because she was so young and because she worked hard to fight back against this stigma that to die of a disease is to “give up.”

Which brings me back to Senator McCain. When the news broke, lots of people shared their thoughts including President Obama.

“One of the bravest fighters.”

“Give it hell, John.”

I know why President Obama said these things. It’s the same things I would have said prior to my diagnosis. But now I know better.

There were a number of really terrific pieces about the dangers of equating the language of war with the language of disease. It creates a dynamic that implies that were someone to succumb to their disease then they didn’t try hard enough. They didn’t fight hard enough. As if to imply that they just gave up.

There is no giving up with cancer in the same way there is no “trying harder.” Cancer isn’t like that. When people told me that I would be fine because I was a fighter or I was brave I was never sure what to say. I wasn’t brave. I was terrified. I wasn’t a fighter. I was doing the things the doctor told me to do to increase the likelihood of being NED (no evidence of disease) at my next scan. Because there is no cure, doctors do not use that term. You cannot be cured of cancer. You can only have no evidence of disease.

So when the news broke I went to twitter like everyone else and voiced my opinion.

And another user responded:

And I said to myself HEY LOOK A TEACHABLE MOMENT and got to work. I thought I would share my responses here so that other people can have the opportunity to learn how to talk to someone who is ill. And before I get started, I want to stress that I completely understand how hard it is to be faced with the mortality of someone you love, someone you work with or someone you’re friends with. I get it. It’s hard. But telling them they “got this” doesn’t make it easier. Got what? What is there to get? Cancer is me. It’s a bunch of rogue cells causing trouble and my immune system is ignoring it.

So here’s my free advice on what to say and what not to say to someone who is ill

Remember too, that it is okay to be unsure. It is okay to be scared. It is okay to think about it not working out for the best.

It is okay to think about them dying. Because trust me, they are thinking about it.

We are all going to die. Dying is what makes us all so beautiful. Knowing it can’t last is what makes it so special. As my friend Lori once said “We are humble and radiant and temporary.”

Temporary. All of us.

I hope this helps.

Peace, love and starbursts,

Ally

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Representation Matters for the Diseased, too.

18 May

Image result for Abbie in 20th century women

So something kind of amazing happened the other week. I’ve been rather vocal on the twitters and what not about the portrayal of people with cancer.

Right. See? Cause the things is there are loads of movies I can point at where people with cancer cease to be human and instead are just the embodiment of their disease from which they succumb and everyone else learns to love and appreciate their life.

Sometimes the characters don’t even get their names in the title for pete’s sake.

And don’t forget the books.

Sometimes they get it almost right but only when it’s written by someone on the inside.

And I get that it’s a really easy way to share the human condition and pain and fear and mortality. But as Dr. Roberta A. Clark says in this Huffington Post piece:

“Cancer can involve a lot of messy things — surgeries with colostomies and urinary bags and some kind of nasty things,” Clark said. “That’s not something that filmmakers typically want to portray. It’s probably also a little more emotionally compelling when you have a 30-year-old victim instead of a 75- or 80-year-old victim.”

“If you’re in the film business, part of which is selling sex, it’s hard to walk that line between breasts for titillation and breasts for disease,” Clark said.

So instead they romanticize cancer deaths, framing them as inevitable even as survival rates increase. But what happens when those of us tune in to see our experiences. Because as we all know, representation matters.

“The world looks different after you have spent time pinned to the mat by death. The gaps between reality and representation are no longer theoretical. They are contentious. Beautifully bald actors shorn to portray chemo patients betray reality with their thickly lashed eyes, much to the chagrin of those of us left lashless by the real medicine. Some of the most egregious side effects of treatment cannot be artfully depicted on film ­— mouthsores and constipation, anyone? — while vomiting, which has become more manageable thanks to newer side-effect medicines, continues its prominent role as a cancer-flick leitmotif.” – Ilana Horne

So yeah to say it pisses me off is an understatement. Whenever I watch one of these movies and it ends I rant for a solid 15 minutes straight as my husband prepares dinner about how much bullshit it is that people with disease cease to be people and just become their disease.

And then something cool happened.

I met Abbie from 20th Century Women.

When you watch that clip you learn a lot about Abbie – that she’s a photographer, that she loves punk music and dancing. You learn that she’s smart and funny and has a very good heart.

What you don’t learn is that Abbie is also a cancer survivor who, during the course of the film, has a scare.

But this is only one small part of Abbie. She’s a person first. She just also happened to have gotten cancer. She just had that same terrible luck as the rest of us.

I was left with so many feelings for days after this film I did the only thing I could think of: I said thank you to its creator.

Dear Mr. Mills

I have no idea if you’ll actually get to read this or not. I hope that you do only because something truly amazing happened to me this weekend and it is thanks to you.
I’m sure you have heard from many women about 20th Century Women, about it’s incredible feminism, about it’s strikingly honest portrayal of women, as people, something that is sadly lacking in films. I imagine many of them hinged on Ms. Bening’s fabulous performance and how, according to some interviews you conducted, the relationship that character has to your own mother – the overall autobiographical nature of the narrative.
But I’m writing to talk to you about Abbie.
I’m writing to thank you.
As 20th Century Women came to a close and the characters talked about their lives and futures, I was nervous. When Greta Gerwig’s voice came on, telling me the rest of Abbie’s story, I held my breath. When she concluded and across the screen splashed the image of Abbie holding her two children, I burst into tears.
I’m coming up on the third anniversary of my cancer diagnosis, cancerversary as we in the know, call it. I was 37 when I was diagnosed. As is the case with everyone, my life was turned upside down. I am still actively in treatment, three years out, but my prognosis is a good and I have on the whole managed to stitch the remnants of my old life to this new one and find my “new normal.”
That said I have lost some things. Superficial things like music I can’t bear to hear again. Other more important things like feeling carefree and hopeful. I have also found things. Superficial things like jogging. Other more important things like constructive anger and the strange peace that comes from rubbing right up against your own mortality.
Cancer is a powerful storytelling tool. For those on the outside it gives a peak into a world that we all fear as well as a vehicle to talk about some of the things that make humans truly beautiful creatures. For those of us on the inside, we watch these portrayals seeking representation. Seeking solace.
I have read and seen a lot of characters that have had terminal diseases. In more than half of the cases, they die. So I want to thank you first off, for not killing off Abbie. It meant a lot to me.
But more than the death thing there is something else that these characters all tend to share that I find even more troubling than their mortality (after all we’re all going to die, right?) and that is that their disease IS their life. They cease to be people and become instead patients. I believe it was Larry Kramer who detailed the difference between “AIDS patients” and “People with AIDS.” It seems that Hollywood has not learned this difference. Characters with cancer exist solely to die and teach everyone around them the importance of appreciating life. They are rarely angry about their diagnosis. They have no other interests. They are in fact, barely human. They are mirrors for the other characters to work through their own issues.
And then came Abbie. Punky, artistic, sassy Abbie played beautifully by Greta Gerwig. I have been waiting three years to find a character that had a personality, a life, a love of music, dance and photography, dreams about her future; a character that still goes out, that drinks and laughs and tries to live her life as vividly as possible – who also just so happened to have this rotten disease sink it’s teeth into her.
Abbie wasn’t a cancer patient, in the way that I am not a cancer patient.
She was a young woman who also happened to have once had cancer..and lived.
Just as I will be….one day.
Best,
Ally Malinenko
Peace, love and starbursts,
Ally

Better Luck Next Year is officially for sale!

1 Aug

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The writer Joanna C Valente said that “A trauma is a funeral for one; there is no one to mourn you but yourself. The coffin is empty, since you are still alive, but you must fill it with something, and that becomes your former self.”

Or it becomes a book of poems.

BLNY

Better Luck Next Year is officially out and about and available to buy.

And the City Paper wrote a nice review about it saying:

Malinenko’s witty, conversational tone keeps Better Luck from veering into weepy sentimentality. When her speaker describes the sonogram of her tumor, it’s “[l]ike the red spot on Jupiter / a hurricane the size of a planet / here now / inside me” — a brilliant use of simile. When she writes of this news sinking in, “I whisper. Fuck. / The smallest hurricane of a word I know,” it’s powerfully restrained.

The reading last weekend went well. I think. I was pretty nervous and anyone who was there can attest to my incessant shaking. I’ve read poetry plenty of times but never anything as personal or as hard as this. I think I underestimated how hard it was actually going to be. I nearly lost it reading the last poem – the title track Better Luck Next Year – specifically on these lines:

 

and I took the ribbon pin off my bag

because I am not a warrior

or a survivor

but just a young women trying to live with a disease

Specifically the word warrior. The language that we use to talk about a situation – any situation – reshapes it. It frames people’s experiences. The warrior myth – and it is a myth – turns individuals into an amorphous mass stripping them of their unique experience. If you have “winners” then you, in turn have “losers.” As many obituaries read, people “lose their brave battle.” As if I could will myself into better health. As if it were just up to me. That is without a doubt the most dangerous form of magical thinking I can imagine. And it is an aspect of this experience that I feel most strongly about which is why that little word carried so much power.

In the end, I’m sorry I had to write it – that I ever had a reason to write it – but I’m so glad it exists.

So thanks to Kris and Nathan for all their hard work in turning this into a real live book. And if you do get it and read it and have a second to post your thoughts on Amazon or Goodreads, I would be eternally grateful.

Peace, love and starbursts,

Ally

 

 

 

Better Luck Next Year: or How I Learned To Talk About My Boobs

20 Jul

BLNY

So in just three days Better Luck Next Year will be out in the world.

As I’ve said before I’m really excited for you guys to meet this book. We’re having a little reading party with Jason Irwin, author of A Blister of Stars and John Grochalski whose new book Wine Clerk is now out. It’s this Saturday in Pittsburgh at the East End Book Exchange at 7pm. If you can make it, very cool.

We’ll talk about my BOOBS. It’ll be fun.

I want to thank Rege at Tribune Review for taking the time to talk to me about the book. You can read that interview here and if you like what you hear check out Littsburgh.

They asked me “What do you hope readers take away from Better Luck Next Year?”

And I said:

“I think the reason anyone writes anything, or reads anything for that matter, is to connect with another person. To put something into the universe that a stranger picks up and says, ‘Yes, I know that! That’s me!’ To cultivate empathy – something we could all use a little more of. Cancer is an incredibly universal disease. You can’t throw a rock without hitting someone who has been affected. But it is also exceedingly isolating. There is a clear demarcation between the life you used to have and the life after diagnosis and it bleeds into nearly every aspect of your existence. So what I tried to do is speak to that as honestly as I could. It was an attempt to dismantle the ‘warrior myth’ and fetizishing of breast cancer. When you scrape away all the ribbons and charity walks you’re left with some very harsh realities. So if there’s anything I hope that people get out of it it would be the ability to speak more honestly about our shared fears and hopes. To speak as honestly as we can about mortality – our own and that of those we love.”

There’s also a few samples of the poems that you’ll find in the book!

And they did a nice spotlight on Jason’s A Blister of Stars and on Low Ghost in general which is an incredible press that I’m so proud to be on.

Or you can listen to what Karina Bush said (a poet that I don’t know, I swear):

“I am impressed by Ally Malinenko, her poems about her experience with cancer are excellent. I think she has a book coming out soon.”

I do! In three days!

(Also that was sent to me by the guy who published her book and did some broadsides for me so I wasn’t like…googling myself, I swear).

This has been a long week. I had back to back appointments, one of which was treatment. While I was there something…happened.

I was bullshitting with my oncologist as he checked my lymph nodes, he got a phone call about another patient. Her numbers were bad. There was discussion about changing her meds. He told the nurse that he needs to see her and to make sure she gets an appointment by tomorrow and that she can’t start the other medication until she comes in. After he got off the phone there was a beat and I could see how distracted he was by this news. Then he just started chatting with me again.

Me, one of his “healthy” ones.

And I realized that in this ugly twisted fabric of terrible luck, there are pockets of good luck and I am in one of those pockets. And I am so thankful.

And then today, my mammo came back clear. And I’m good for six more months.

So I bought myself some starbursts

starburst

I love you guys.

Peace, love and Starbursts,

Ally

 

 

 

Books are Coming! Books are Here! Books Books Books!

14 Jul

Howdy from the hot garbage smell that is Brooklyn in the summertime!

Yummy!

So real quick, couple of thank yous before we get to the nitty gritty on the books, books, books.

First off thanks to Anti-Heroin Chic for taking these three poems and to Your One Phone Call for this one. Speaking of poetry, I was incredibly sad to find out that Dead Snakes is no longer. It was a great site for writers and readers and Stephen was a tireless champion of all of our work. I can’t thank him enough for all the poems that he’s given a home to and for all the writers he’s introduced me to. I hope the archive stays up.

So books!

BLNY

Next Saturday the 23rd is the official book birthday for Better Luck Next Year. I am super excited for this book to be out in the world, not only because of the subject matter (stupid cancer) but because I think that the folks at Low Ghost helped to put together a really solid book out of the hot mess manuscript I sent them. In the meantime you can add it to your Goodreads To Be Read Pile (should be so inclined).

And if you’re on the fence, here’s what the (amazing) James Duncan of Hobo Camp had to say about it:

Malinenko is so simply eloquent and true that she makes the most personal of her trials too universal to resist, makes those midnight terrors so real you can feel your throat clenching as you pass from one stanza to stanza. I wept as I read her suffering the endless runaround as she searched for medical help, as she picked apart her life for the mistakes she might have made that brought this cancer to her body, as she searched her familial history for tell-tale signs too late to help, as she discussed buying a pizza with her husband on the way home from the hospital because that’s what a human being with or without cancer does when they have to keep on living, right? It is cliché maybe, but I’ll say it: I cried when I read her poetry, because it’s good and real and true and it hit home.

You can read the whole things here!

 

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If you’re in Pittsburgh please do come by the East End Book Exchange at 7:00 pm on Saturday July 23rd for some beers and some poetry and some stories about my boobs, and some possible rants about the “warrior myth.” It’ll be fun. Come.

Also! It’s the release of Jason Irwin’s A Blister of Stars which is a beautiful poetry book – and I’m so glad we’re paired together as it also deals with illness and physicality – and John Grochalski’s Wine Clerk. If you read his first book, The Librarian, then you know what an amazing character Rand Wyndam is and how funny John’s books are. Also, come on, this cover is sweet!

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Some things people have said:

John Grochalski’s is a line that extends back to Steinbeck and Sinclair and up through Fante and Bukowski. Wine Clerk is another brilliant evocation of how miserable the world can be and how surviving with a drink in a dive bar is our only shot at victory.

-Dave Newman, author of Raymond Carver Will Not Raise Our Children

You can preorder now!

 

Next up Epic Rite is including my chapbookI’ll Be So Still You Won’t Even Notice Me – in the Punk Chapbook Season Two. Basically for a paltry $40 you get 12 books of poetry. This is a good deal folks. You can pre-order that one too from the link above!

And finally I got this:

CmCxCadWkAAxltE.jpg large

It was made by the crazy talented Janne Karlsson from Sweden. Now I know how comic book writers feel. Drawings making words better. I’m completely overwhelmed with how cool this is. He also illustrated a poem of mine which will be out later this year.

So that’s about it. Again, if you’re in Pittsburgh please swing by for the book launch.

Peace love and starbursts,

Ally

 

 

Better Luck Next Year

10 Jun

Cancer is a rare and still scandalous subject for poetry;
and it seems unimaginable to aestheticize the disease.
-Susan Sontag from Illness as Metaphor

 

BLNY

Cancer poems, meet the whole world. Whole world, meet the cancer poems.

Low Ghost Press. Out July 23rd.

It’s a limited edition 100 copy run.

I’m eternally grateful to Kris Collins at Low Ghost Press for turning the hot mess manuscript I gave him into an actual book and to Nathan, for copy editing this thing like a champ.

And to all the presses that published these poems beforehand – 48th Street Press, Anti-Heroin Chic, Beechwood Review, The Blue Hour, Carcinogenic Poetry, Clockwise Cat, The Commonline Journal, Dead Snakes, Drunk in a Midnight Choir, Drunk Monkeys, Exercise Bowler, Eye on Life Magazine, Hobo Camp Review, Homestead Review, Horror Sleaze and Trash, Kind of a Hurricane Press, Mad Swirl, Mas Tequila Review, Misfit Magazine, Pine Hills Review, Pyrokinection, Red Fez, Revolution John, Verse Virtual, Yellow Chair Review, and Your One Phone Call – thank you.

Thank you for giving me a space to scream and cry and laugh. I’m eternally grateful.

You all helped keep me alive through this.

And while I’m saying thanks, thanks to In Between Hangovers for taking The Bridge That Doesn’t Go To Manhattan and Cancer Math and also thanks to Drunk in Midnight Choir for taking these three poems. Also thanks to CommonLine Journal for Radiation Day 17 and Red Fez for My First Visit to the Apple Store: April 2016

BETTER LUCK NEXT YEAR is, thus far, the most honest and personal writing I have ever undertaken. I’m glad it is going to exist in the world. It is literally the lemonade from the lemons.

If you’re in Pittsburgh on July 23rd we’re doing a reading at the East End Book Exchange. Come on out. I promise not to be depressing. I mean honestly how bad could it be. I’m gonna spend some time talking about my tits!!

Oh and I’ll have a bunch of broadsides from Chris at 48th Street Press to give away.

Like this:

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Give the title track a spin. (originally published in Red Fez)

Better Luck Next Year

I’m not even sure why I kept it so long

this pewter pink ribbon pin

that was given to me during radiation treatment,

 

that first day when the nurse walked up and said

I have something for your collection

nodding at all the pins on my bag

and placed in my hand a little pink ribbon

a symbol

 

a mark

 

and I took it with quivering fingertips

there in my hospital gown

waiting to be burned

 

because I didn’t know what else to do.

I put it on my bag with the others

and there it stayed

through all of treatment

 

through the tears

and the panic

the sick dizzy feeling

in the middle of the night when I got up to pee

the one that told me

 

You’re going to die. Sooner. Painfully.

It stayed there through the injections

and the long hours spent in the waiting room.

 

It stayed there through telling my parents

and my friends and the depression

and the anger that crashed against me like a tidal wave.

 

It stayed there until

yesterday

when I looked down at it

and realized

I don’t want a symbol

and I don’t want to be a warrior.

 

I thought of all the young women that came before me

the ones that died

and the ones that lived

and all the others out

there right now blossoming

this burden in their holy bodies.

 

I thought of all of things people told me

when I told them about this hurricane of a tumor in me

 

and it was yours that came back to me:

 

Better luck next year, I guess.

 

You said it not insincerely

but with the exacting honesty

of the unchangeable

unfairness of this life

 

and I took the ribbon pin off my bag

because I am not a warrior

or a survivor

but just a young women trying to live with a disease

and I hurled it over the

wrought iron of the cemetery fence

and I kept walking

not caring to see which grave it landed at

 

knowing that at least

it wasn’t mine.

And finally, today, June 10th, is Cancerversary Year 2.

This girl’s still alive.

Suck it, cancer.

Peace, love and starbursts,

Ally

Where the Fuck Did May Go?*

24 May

*Yes it’s a David Bowie reference. Yes, I’m still upset. Leave me alone.

We must always work, and a self-respecting artist must not fold his hands on the pretext that he is not in the mood. If we wait for the mood, without endeavoring to meet it half-way, we easily become indolent and apathetic. We must be patient, and believe that inspiration will come to those who can master their disinclination. – Tchaikovsky

 

So wow….I seemed to have lost a month. During the beginning of which I turned 39 (!!) and by the end of which, today, my husband reached over and plucked a white hair out of the top of my head.

I’m not even kidding. It was WHITE. I’m officially old.

So in between now and then I have a few people to thank, list-style

In other writing news, I’ve been working with Six Gallery Press and Low Ghost Press on edits to Better Luck Next Year which should be out end of July. In case you don’t know it’s the poetry book that’s all about the cancer escapade. I won’t say journey cause I hate that term. Anyway, I gave Kris at Low Ghost a giant hot emotional mess and out of that he has helped to carve a really honest and raw look at what 2014-2015 was like from the days before diagnosis to the end of treatment.

Caveat: So I’m just going to put this here because a number of people have asked me about treatment lately, specifically Am I done? and if not When will I be? That’s a hard question to answer, even as I come barreling towards Cancerversary #2.  I’m not going to be “done” for a few more years. I’ll be on tamoxifen for at least three more years unless it causes potentially dangerous side effects. I’m still going to be getting injections of ovarian suppressants (Zoladex) for another year and a half. But what I do each month is not at all like what people typically think of when they say “treatment” which is chemo. So I guess the answer is yes-ish but also no-ish.

/end caveat

I’m really excited for Better Luck Next Year. I think it contains some of my best writing – and if not then it’s definitely got the rawest and most honest stuff I have done. I promise it’s not to terribly “woe is me” or too terribly depressing.

In other writing news, I’ve been doing a lot of hand wringing lately over Palimpsest (the massive nightmare that is the sci-fi book.) I’ve been querying agents and I’ve had some very promising leads and bites and interest but nothing that has panned out into an offer. Which is fine, these things take time. That said, at the beginning of the month I had a really interesting conversation with an agent who made some suggestions that would require a big revision.

Big.

And I have been heming and hawing about it for a month now, whinning to friends and beta readers if I should go through with it and “one person’s opinion” and “am I willing to do the work” and whine whine whine.

Ultimately the problem is the end. Endings are HARD. And then a friend shared this list of suggestions from Billy Wilder to Cameron Crowe:

  1. The audience is fickle. Grab ’em by the throat and don’t let ‘em go.
  2. Develop a clean line of action for your leading character.
  3. Know where you’re going.
  4. The more subtle and elegant you are in hiding your plot points, the better you are as a writer.
  5. If you have a problem with the third act, the real problem is in the first act.*
  6. Let the audience add up two plus two. They’ll love you for it.
  7. In doing voice-overs, be careful not to describe what the audience already sees; add to what they are seeing.
  8. The event that occurs at the second-act curtain triggers the end of the movie.
  9. The third act must build, build, build in tempo until the last event, and then …
  10. … that’s it. Don’t hang around.

 

* emphasis mine

My friend wrote a whole post about it here which is great and you should read it. It was number five from this list that hit home for me.

And I think I found the problem in the first act. So the only question is should I cut my loses, scrap this to “one person’s opinion” and move on?

Or am I able to do the heavy lifting – the WORK – that will be turning this book around? Am I willing to put my other stuff on hold to go back into the trenches with Palimpsest again?

Oh who am I kidding?

My alarm is already set for 5 am. There is no spoon.

Wish me luck.

 

 

 

 

 

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