Tag Archives: cancer

Pink is a Color Not a Cure

30 Sep

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It’s that time again.

Welcome to Pinktober where every dime you spend will go towards breast cancer research. Yeah! Huzzah! Excitement!

Except maybe it doesn’t.

You guys know that I love you all. And when you email me, as some of you have, and tell me that you’re doing X Y or Z for my behalf I am honored and flattered and humbled and showered in love and feeling ALL THE FEELINGS!

So that’s why I want YOU to put your money into something that will actually help women like me. Not all charities are build the same. So let’s take a look at some of the problem ones and some of the good ones, okay? That way we can make informed decisions.

Let’s all think before we pink.

  1. Young Survivors Collation

I love YSC. The Young Survivors Collation is specifically for women under the age of 40 who were diagnosed with breast cancer. After my diagnosis I leaned on them a lot. It mattered that I had women that I could talk to – share stories with – share fear and laughter with. Supporting YSC is a great thing. No it doesn’t go towards physical health or research but it goes toward MENTAL health which is super important.

That said…..and I’m doing this in full disclosure. Revlon is sponsoring this fundraiser and according to the Environmental Working Group’s Skin Deep site, Revlon doesn’t have the best track record in terms of making products that don’t contribute to diseases. They are low for cancer but higher for immunotoxology. So this is your call.

2. Susan G. Komen

Ugh. Where do I start. Susan G. Komen has had its share of bad press – bullying other charities and for partnering with unhealthy business. Businesses like KFC (who serve hormone infused deep-fried animal protein which I promise you was not on the list of things my oncologist suggested I eat) and Baker Hughes (a leading drill bit company for fracking materials. Yes, fracking. The process that “injects possible and known carcinogens, including benzene, formaldehyde, and sulfuric acid, into the ground and surrounding environment.”)

But Ally, you say, business is business. Isn’t it more important that the money I donate to Susan G. Komen goes towards research? Yes. It is. Unfortunately 80% of the money they raise goes toward advocacy – towards spreading their message (what they call program expenses). So basically they raise money to keep talking about breast cancer. Last time I checked, with a 1 in 8 diagnosis statistics, women are pretty much well aware that breast cancer exists. What they weren’t getting was a cure – the thing Komen claimed to be working towards (though less than 5% of donations go towards research.) The thing they sued to have naming rights for.

3. Avon Walk to End Breast Cancer

Back in 2001, when my mother was diagnosed, my sisters and I did this walk. It felt good. I had hoped I was making a difference. I was wrong. Amy Lubitow and Mia Davis summed it up nicely here:

One of the most poignant instances of pinkwashing is the cosmetics giant Avon. The company launched the ‘‘Kiss Goodbye to Breast Cancer’’ campaign in 2001 with a fundraising lipstick in six shades (Courageous Spirit, Crusade Pink, Faithful Heart, Inspirational Life, Strength, and Triumph). Those lipsticks may have contained ingredients that disrupt hormone functions (which is in turn linked to breast cancer). The use of hormone disruptors is not uncommon in the cosmetics industry, and is not currently prohibited by U.S. law. Avon is one of the most recognizable corporate entities participating in the breast cancer awareness industry and according to the Massachusetts Breast Cancer Coalition (MBCC), more than 250 of Avon’s products listed in a database assessing the health risks of cosmetic products are listed in the ‘‘highest concern’’ category due to the presence of hormone disruptors, neurotoxins, and possible carcinogens. Avon and many other companies fall back on the claim that ‘‘it’s just a little bit’’ of carcinogen or hormone disruptor in a given product, despite the fact that we are all exposed to more than one product and to thousands of chemicals daily, and that low doses of these chemicals are very concerning.

Read the entire amazing paper here.

Just a little bit of carcinogen? Great. Cause I got just a little bit of cancer.

Pinkwashing is very real. It’s what Barbara Ehrenreich referred to as “bright-siding” – our culture’s obsession with positivity even during hardships. It’s the warrior attitude. And it’s pushed on cancer patients nonstop.

Story: When I was first seeing oncologists one in particular really pushed for me to get ACT (a very aggressive form of chemotherapy whose side effects include heart toxicity and leukemia). Lobular cancer, unlike ductal, doesn’t respond as well to chemotherapy. When I challenged this doctor he said  “You’re young. You can take it.” (here’s the poem I wrote about it). Basically he was saying, “You’re a warrior now Ally. Act like it”

I reject that.

I know that it is absolutely terrifying to sit next to a loved one who has been plagued with this terrible disease. I have done it with my own family. I have watched the havoc it has cause for my husband. But knee jerk donations to events that only perpetuate more events helps no one.

Pink ribbons don’t do shit. And Pinkwashing just wipes out whatever conversation we could be having about disease causation and treatment. It stops us from really learning how to end this. Buying a ribbon or a pink t-shirt or walking around Manhattan isn’t going to save the next person.

But research and science can.

I’m not saying don’t donate. I’m just saying donate towards something that IS searching for a cure though immunotheraphy (therapy that drive the body to recognize that cancer is there and problematic) and towards metastatic cancer. Only 5% of funding dollars goes towards trying to cure metastatic cancer. But it is the direct cause of 90% of all cancer deaths. You know what that means? If your cancer spreads from it’s primary location – like from the breast to the ribs – there’s nothing to be done other than management. Very few people live longer than 5 years with metastatic cancer.

There is so much work to be done – work that IS being done – and work that needs to be funded. So please instead of collecting ribbons, just give to science. Point being just don’t buy things full of cancer causing agents cause they’ve got a ribbon on it. They’re just looking for your money.

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And finally if you want to know where I’m donating, it’s here. I think they have a real chance: The Breast Cancer Deadline.

2020 is our year. I know it.

I love you all. Have a wonderful beautiful October.

Peace love and starbursts

Ally

We Contain Multitudes. With or Without the Little Dudes

31 Aug

First as always – the thanks yous:

Thanks to Your One Phone Call for giving this poem, Universe, a home and to Commonline Journal for accepting this one about waking up in the middle of surgery….cause that was all kinds of “awesome”.

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Gustav Klimt’s Mother and Child painting

So I read this piece the other day by Amanda Palmer (musician, living statue, author, shit stirrer and soon to be new mother) a response to a fan who was displeased with her (Amanda’s) decision to procreate and it really struck a nerve which, considering I don’t have children, I found sort of odd.

A little background on that whole childless/free thing. My husband and I are both writers who keep full time jobs. That means that in order to get the real work done, we need to make sacrifices. The main sacrifice we have made for the last decade is sleep. We both get up at 4:30 in the morning, five days a week, in order to get some writing done. On the whole it’s been a fair trade. Prior to doing this I barely got anything done. Since then I’ve written 3 novels and 2 books of poetry almost all of which has been accepted for publication or already published. So though I’m dead in the water by 10 pm, I still do it.

That said, we have at different periods in our life both causally and seriously debated having children. I know lots of people that are and have been decidedly in one camp or the other but for me, I feel as though the uncertainty about this choice is how I knew I was taking it seriously.

Like if I was 100% YES KIDS or 100% NO FOOKING WAY then maybe I wasn’t really thinking the whole thing through. There’s good and bad to everything when you put it on the scales.

So we waffled for awhile and then, over time, as our lives changed and we traveled more, we slid down the shoot into the No Thanks Camp.

And then I got cancer.

The first oncologist I saw, rather condescendingly, told me to save my eggs because even if I *think* I don’t want kids, he’s seen loads of women regret that choice and you’re only 37 blah blah blah. Needless to say, this guy isn’t my doctor. Once treatment actually started another doctor posed the same question and when we told him no, we weren’t having kids, he mimed wiping sweat off his brow and said, “Oh good. That makes my job way easier.”

And there it was. Crystalized and sharp, like a knife cut.

The thing that I had always been empowered by, the CHOICE that I had made and subsequently re-made was magically no  longer a choice.

It went from being a thing that I did, to a thing that was done to me.

In case you don’t understand, these are very very different things.

And my feelings about it were a surprise even to me.

I wrote a poem about this exact thing in which I said this:

And right there everything comes together

Needlepoint sharp.

I see the split in the road and it is permanent.

There is a cold hard difference

between setting down something precious

and having it pulled from your hands

still wet with afterbirth.

And in that moment I learned that we contain more multitudes than we even realize.

So when Amanda responded to a fan who proposed that now that she was going to have a kid that she would be incapable of making good art, or art at all, it got me thinking….if this disease hadn’t happened to me, if my husband and I had changed our minds, how we would manage to make art with a child?

I believe in my commitment to writing. Even though it’s hard, I pull myself out of the bed, I stare at that empty screen every morning and try to cobble together some record of what it’s been like to live in this world, in this life. And I believe that if the desire was strong enough, we would have a kid and find a way to make it work. I have no idea how but I believe in us enough to know that we would. It might have been messy and it might have been hard but we would have done it.

Like Amanda says, “Jump and the net shall appear.”

To say that mothers can’t be artists or artists can’t be mothers is to, once again, limit the potential that women have. To tell them that with their one beautiful life, the only one they will ever have, they can only choose to be one thing.

I reject that.

Did anyone send Amanda’s husband a similar letter? I can see it now:

Dear Neil Gaiman,

Now that you’re a father, I guess all the award winning books and stories are going to turn into sentimental schlock because that’s what fathers do, right?

Signed,

A Disappointed Fan

No. Of course not. That sounds ludicrous. Because the American dream, i.e. I Can Be/Have/Do Anything I Want As Long As I Work Hard Enough isn’t applied across the board evenly.

Or maybe it’s because America doesn’t consider art-making “real work.”

The same way it doesn’t consider motherhood to be “real work.”

Every time we limit ourselves to one signifying descriptor, we lose the chance to find something amazing in ourselves, our lives and the people around us.

These terms are just terms. They don’t have to have power. Women have always made art. And they have always been mothers. Men have always made art and they have always been fathers.

And business men

And we have always been sons and daughters.

And leaders and liars.

And thieves and lovers

and kings and queens.

The point is we all contain multitudes with or without the little dudes.

Peace, love and starbursts,

Ally

P.S. – here’s a great list of books that address this whole motherhood and art thing. And this movie!

Zooming Out, The Cleaving, and the Never Ending Universe

24 Jul

We start with gratitude.

Many thanks to Red Fez for publishing Better Luck Next Year and to Misfit Magazine for taking my short poem I Don’t Feel Like a Fighter Today

Without small presses I couldn’t share. Unable to share, I would be trapped.

Mute. And probably rather terrified.

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We found a planet yesterday and since then, it’s pretty much all I have been thinking about.

There’s a game that I play, that I’ve played since I was a kid.

I call it Zooming Out.

It’s a simple game. You picture yourself from above.

Here is Ally, sitting on the stone ledge. You zoom out.

Here is the ledge at the library. You zoom out.

Here is the library on Eastern Parkway. Zoom out.

Here is Eastern Parkway in Brooklyn

Brooklyn on the end of that long island

That long island at the end of the state

NY State in the country

The country on the planet

The planet hanging in space in the solar system

The solar system a mote of dust in the wide sweeping arm of the milky way

and then the milky way, just a cluster of stars and hearts and lives; a little speck in the universe.

Here is the never ending universe.

Zooming out.

I am so small and it is so big.

On my walk home yesterday, the setting sun casting the sky in a perfect perfect vanilla and red swirl, I thought about this new planet. About our planet hanging out there in space, filled with all our noise. Everyone who has ever lived or who will ever live, has lived on this speck of a planet (so said Carl Sagan). And out there all those other planets, alone, maybe inhabited, unable to talk or find another planet to reach.

All of us feeling alone together.

This new earth they found is too far for us to ever reach, spectacularly existing.

I have been thinking about the Cleaving lately. About the separation of mind and body that happened with my cancer diagnosis. About the blame. About how I have raced through the litany of questions. Did I eat the wrong things? Did I drink too much? Did I not exercise enough? Do I just have bad luck? Is it a gene they haven’t found? Am I being punished? Could I have worked harder? Been more careful? More honest? More better?

All the time I heave my heavy heart onto the silver cold scales for weighing and judging. Each month when I go to the doctors for treatment, I am again assessed. Have I lost enough weight? Is my estrogen low enough? Is it enough? Am I doing enough?

And these are all questions to avoid the big question:

Will my cancer come back?

This is my mind. This is not my body.

My body is a different thing. A thing that only gets center stage at times. Like when I run. Because then I am only water, blood, sinew, tissue, bone, good hard strong bone, muscle, jelly organs, cells. A pumping functioning complex machine of a thing.

And this is how it has been since last last June.

My mind OR my body.

Never both. This is the Cleaving.

Except the other day, I was outside and after writing in my journal, I laid down on the stone ledge, music in my ears, a woman’s voice, the strum of guitar and it started to rain. Not a lot. Just a little bit, the kind of rain that feels like little tiny kisses everywhere.

And it happened.

I was IN my body. My mind found my body, like a reunion of sorts. I could feel the air, the rain, I could hear the little singing woman in my ears, I was no longer two things.

I was just Ally again. The two halves lined up like they used to – like they were always meant to do.

It was brief but it happened.

It makes me think that it could happen again.

That my mind and my body – like two planets – will find a way to communicate. To bridge all that empty space in between.

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Cancerversary, or How I Became the Real Ally

10 Jun

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Today’s my cancerversary.

In case it isn’t apparent cancerversary is the anniversary of the day your life was radically changed by a cancer diagnosis. Mine is today. On June 10, 2014 at around 2:00 or so my doctor called. I was at work at the library. I stood in the hall near the bathrooms which was, oddly enough, the most private place I could find where I still got decent reception. And he broke the bad news.

I pretty much said, “Okay” and “thanks.”

He promised to email me my pathology report and he explained that the next step would be finding a surgeon. He suggested I check with my insurance. He gave me a few names to call.

I went downstairs and called my husband.

I don’t know if I said the word cancer or not to him. I might have just said that it came back positive. I don’t actually remember. I know by then I was crying.

An hour later I sat in a meeting at work, listening but not really listening. Talking but not really talking.

Two days later, on my tenth wedding, we met my surgeon. She was nice. She acted like this was no big deal. She used the words small, early and treatable. We liked those words and ate them up like strawberries.

That weekend I met my whole family up in Albany for my nephew’s high school graduation. I told no one. In fact, I kept my cancer a secret for awhile – longer than I had originally planned to.

I’m not a big fan of June 10th. It’s not something I want to celebrate to be honest. My life was sort of cleaved in two on that day and I’m just now, a year later, starting to stitch it back together.

So I suppose I could celebrate another cancerversary. The first surgery? Except then there were two more. The last surgery? But then there was radiation. The last day of radiation? Maybe but I still go for injections every month. It will be years before I hit a point where I only see my oncologist twice a year.

When I was diagnosed lots of people told me that I should appreciate everything now. Suck every last little bit of marrow out of life. And I nodded and agreed but all I could think inside was, but I already do that! I already loved my life. I didn’t need to be shocked into appreciation. I already did! I was a marrow-sucking fool!

But, a year later, here’s something that cancer has given me:

When I was a kid my sister and my friends and I used to play this lava game. Everyone played it so I’m sure you know what I mean. You toss all the couch pillows on the floor and you hop from pillow to pillow and if you touch the “lava” (floor) you die.

I realized recently that my whole life had sort of become one giant game of lava. When I look back on the years the things that stand out where the experiences, the events, the major changes. I hopped from the high school pillow to the college one to the marriage one to the traveling one.

When I looked ahead of me all I saw were more pillows. More things to do. More things to accomplish.

Land a major book deal. Get more poetry published. See more places. My life had been distilled down to a giant checklist. Accomplish. Accomplish. Accomplish.

Once those things happened then, and only then, would my “real life” start.

Then like the Velveteen Rabbit I would be the Real Ally.

Some time last year, I stopped thinking that way. I think it was because it was impossible to think any farther than the next day. That was the reach I had. Everything was distilled down to getting through the next 24 hours. Getting the next call from the doctor. From my father telling me about my mother’s failing health. Getting through each day without falling apart. Thinking that way can change you.

So now, there aren’t any more pillows. Sure, there are things that I would like to have happen; things that would be nice and fun and cool but they don’t define me anymore. All the days count equally. The do-nothing days count just as much as the big days. They’re all my days. Mine to have and enjoy and remember.

My sacred days. I’ve become the Real Ally.

Like David Foster Wallace said, much more eloquently, this is water.

Or in my case: lava. And I’m not going to die if I don’t make it to the next pillow. I’m going to enjoy being in the lava.

I’m not saying that days like today won’t be hard because they will, but anniversaries have a way of slowing you down, of keeping you looking backwards which, sometimes, is the wrong direction. I’ve already spent too much time mourning my sad days. Right now, my chances of getting cancer (again) are just the same as the rest of you. Granted I take drugs to get me even with you but regardless, I’m not wearing a scarlet C anymore.

So with each good MRI, like the first one I got last week (WOOT!) I’ll celebrate the days that passed and the ones yet to come.

That’s about as much a cancerversary as I’m interested in doing. I’ve changed. And I’ll keep on changing. And I’m okay with that.

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In other news, I started a new book this week and it feels really really good to be writing something new. It’s about some old high school friends and a tumble I took off a waterfall leading to a split skull. And eventually a broken heart.

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And in the way that the world is weird, one of my dearest friends told me that much of the art that he was doing in HS was related to Keith Haring’s glyphs so, since I wanted to include this, I grabbed Harings journals and right now Haring is going on and on about Sartre’s Saint Genet – which I bought used two weekends ago! Prior to reading the Haring, of course.

Full Circle!

And since I started a new novel, I cleaned up my writing room and in case you were wondering what a book really looks like – these are the drafts of Palimpsest. Not even all of them. So just remember that when you’re reading a book behind it are a dozen other working (or not) versions.

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Finally I got a few poems published so many thanks to Dead Snakes for taking these and to Drunk Monkeys for this one. And finally to Exercise Bowler for taking this one.

So that’s it. Every day counts. Regardless if it’s a pillow day or a lava day.

It counts just because it exists and it’s yours. Enjoy them. You’re real, too.

Peace, love and Starbursts,

Ally

Moar Pie for Everyone, or Why Simon Pegg was right

20 May

Hi.

So I made it (barely) through my first week of post-trip hangover. It wasn’t easy. More than one cookie were consumed. I had no choice, I tell you!

But some cool things did come up, like my getting to talk to Vanessa Barger about This Is Sarah and writing and Antarctica. Thanks Vanessa! And speaking of Sarah, Apryl at Apryl Showers was kind enough to share her thoughts on This Is Sarah.

Set in a small town, where no one would believe such horrors would occur, the abduction of Sarah  Evans ricochets through everyone from school friends to neighbours. There is an incredibly realistic feel to the novel. The pace is even, with a slow tempo allowing you to really engage with the emotions of each character. In fact the reader could almost be one of the neighbours or a school pupil – someone who knows of the missing girl but has no real personal connection.

Many thanks to Apryl for her kind words. And in the thanks department, thanks to Mad Swirl for publishing Premonitions of a Sash, and to Cultured Vultures for Radiation Day 22 and to Blue Hour who published Radiation Day 24, Radiation Day 26 and Radiation Day 30.

During treatment I got a lot of mileage about my own fear and experience and out of my husband’s but it wasn’t until I was in radiation every single day, sitting next to the same people that I really started to understand what my friend Don was talking about when he said:

Funny thing, one thing nobody ever said to me – in this time when you will be so inward looking, so concerned with self, make sure you look about you as you go for regular treatments.

The staff, the fellow patients – there is so much there to take in, so much about who we are as humans, how we handle things. How we share, especially casually, in greeting, even silently, in the nod of a head or a smile. 

I didn’t say much during radiation. I came in, changed, kept my headphones in, forced myself to return their smiles, muttered a good morning and hoped my wait wouldn’t be too long. The waiting room was in fact the hardest part of radiation treatment. Just me, at 37, with a bunch of much older people. I tried to block it out. But you can’t block something all the time for 38 days in a row. You just can’t. So little by little, Anna, and Maria, Betty, the guy I called The Angel cause he was dressed in white from head to toe and the Russian guy who didn’t talk to anyone and the old black woman who was getting full brain radiation – all of them just sort of crept into my life. I found out from The Angel that she lost her sense of taste. I remember him sitting there, shaking his head asking, “Can you imagine anything worse? Not being able to taste anything at all?”
It was comments like that which helped shake me out myself. That made me look around the room, and as Don said, really see this moment in my life.
I hope I did all of them a bit of justice on the page. They were good people who like me, were stuck somewhere terrible. They made the best of it. I hope they’re doing okay now.

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In other news, (and getting to the point of this post) I just finished reading On Interpretations and Other Essays, the classic Susan Sontag book. I’ve only read her interviews prior to this so I really enjoyed it, though there were some high and low points as with all books. My favorite essays were On Interpretations with its stellar conversation about form and content, and On Culture and the New Sensibility – which though written in 1965 is very relevant today with the constant high vs low art debates. Because SURPRISE, SURPRISE, the internet is MAD again.

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The new sensibility is definitely pluralistic; it is dedicated both to an excruciating seriousness and to fun and wit and nostalgia. It is also extremely history-conscious; and the voracity of its enthusiasms (and of the supercession of these enthusiasms) is very high-speed and hectic. From the vantage point of this new sensibility, the beauty of a machine or of the solution to a mathematical problem, of a painting by Jasper Johns, of a film by Jean-Luc Goddard, and of the personalities and music of the Beatles is equally accessible.

So this time Simon Pegg is in the hot seat for his comments about comic book movies. He has, as required in this age of super-sensitive interneting, issued an apology. But before we all pat him on the back I think we need to take a look at what he’s ACTUALLY saying:

“Now we’re essentially all-consuming very childish things – comic books, superheroes. Adults are watching this stuff, and taking it seriously.”

This morning on my way to work I listened to Claude Debussy’s Prelude A l’Apres Midi D’un Faune (Afternoon of the Faun). I don’t listen to Claude much on my walk (or really much classical because of the trucks on 5th avenue). It opens with a harp. Upon the first note, I immediately thought of this:

That’s a scene from one of my favorite episodes of The Monkees where Peter sells his soul to the devil to learn how to play the harp.

Do you see where I’m going here?

Debussy = sounds lovely = Happy Ally

The Monkees =  goofy laughs = Happy Ally.

That’s the point of art. And variety makes for good “art-ing.” I think the #IReadYA thing is great but if you ONLY read YA, well…..you’re missing out. I’m sorry but you just are. It’s just as bad if you only read the New York Times Bestseller List or if you only read “literary” fiction written by white guys in Manhattan. White guys in Manhattan don’t know everything there is about this world. You’re limiting your own experiences if that’s all you’re reading.

If you’re only getting one small slice of the art pie, you’re not getting enough pie. MOAR PIE!

Now what I think Pegg here is talking about is that there are A LOT of comic book movies. Since 2010 there have been about 30 superhero movies made. THIRTY! And the reason there are so many is cause they make money. For me, his criticism is about the fact that we are paying the industry to keep feeding us the SAME THING OVER AND OVER AGAIN.  Honestly when I think about the money spent on these movies, I feel dizzy. But as long as we keep forking over our paychecks the industry will keep churning it out. That’s how business works. What are we getting out of watching the Hulk smash things? Do we really need another Spiderman reboot?

There has always been and will always be good science fiction and fantasy out there. Moon and Europa Report were two really well done movies that I walked away THINKING about. Come on, an alien that helps humans BE more human by trying to understand them? That’s why it’s classic. That has staying power.

Look, I love sci-fi. I love fantasy. I also love Godard. These things don’t have to be mutually exclusive. One of the best comments I ever got in my life was when someone looked at my goodreads list and said “wow….you’re all over the place.”

Yes, I am. Proudly.

Anyway, I’m pretty sure that Sontag’s comment, made in 1965 can be the last one necessary to end this whole high vs low art thing. Time to put the tired conversation to rest. Let’s all stop hating on Simon Pegg, now okay?

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Speaking of “the solution to a mathematical problem….” I got back to work on Palimpsest this morning along with the help of some really great beta reader notes (I love you, guys). I also happened across this great video explaining the Fibonacci Sequence, a mathematical premise that is featured in my book.

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The Golden Mean

The sequence, for those of you who don’t know, is the following:

0,1, 1, 2, 3, 5, 8,13, 21, 34, 55, 89, 144

and on and on and so forth.

It is derived by adding the first number to the next number. So:

0+1 = 1

1+ 1 = 2

1+2 = 3

2+3= 5

3+5= 8

5+8 = 13

8+13 = 21

13+21 = 34

21+ 34 = 55

34 +55 = 89

55 + 89 = 144

and so on and so forth. But the real cool thing is that the Fibonacci sequence is EVERYWHERE. In the spiral of a seashell, in the arms of the galaxy. Even in your own bones!

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Aspects show up in art and architecture and in our DNA.

And this is why math and science are amazing.

Check out the video. It’s not long and it’s got cool music.

Peace, love and starbursts,

Ally

Empathy Cards by Emily McDowell

11 May

Hi.

I’m still really jetlagged and exhausted and processing what the last two weeks away were like – post on that to come – but in the meantime I needed to share this:

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After my diagnosis, as I slowly told the people around me what was happening, I got quite a few comments that I can only describe as ranging from off-putting to down right fucked up. Now, I’m not blaming anyone. I get that people don’t know what to say. It’s hard. Hell, there were times my husband and I didn’t know what to say to EACH OTHER. Searching for something to say, people google things. They offer suggestions to dietary changes or exercise or some random clinical trial that saved their cousin Sal. They tell me that whatever doesn’t kill me would make me stronger. They tell me that now I have to live my life to the fullest, appreciate everything – as if I were taking it all for granted beforehand. I know they’re trying. But often these sorts of suggestions just increased the overwhelming feeling of isolation that I already have. And the feeling of isolation is one of the hardest aspects of having cancer.

Enter Empathy Cards.

Emily McDowell, a cancer survivor, designed these cards to try to fill the huge hole where the sentiment implied by “Get Well Soon” just doesn’t.

“The most difficult thing about my illness was the fact that it was so lonely,” she says. One of the reasons was “friends and family either disappearing because they didn’t know what to say or well-intentioned people saying the wrong thing. So one of the most difficult things about being sick was feeling really alienated from everyone that I knew.”

I think these cards are amazing. More information about her work is here.

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I think they sort of give a voice when there’s so little to say. Also the lemon one, up top, what is that about?? I’ve lost count of the number of people who, upon learning that I had cancer, told me about someone they know who died. What is my response supposed to be to that?

“Um, thanks I guess?”

Anyway, good on Emily for making these.

I’ll probably have another post later today about THE TRIP.

Peace, love and starbursts,

Ally

“Do you know what the problem with living in a fishbowl is? Everyone can see you.”

10 Mar
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“Nothing in life will call upon us to be more courageous than facing the fact that it ends. But on the other side of heartbreak is wisdom.”

I watched Wish I Was Here this weekend, the movie that Zach Braff kickstarted (to much kerfuffle). Much like Garden State it’s overly sentimental with far too many slow-mo montages and a very precious indie rock soundtrack. It’s also funny, charming, unbelievable well cast and heartbreakingly sad.

And it’s very much about cancer.

I can already hear the “Ally, so are lots of things.” Yes, this is true. Cancer is pretty damn pervasive. Since I was diagnosed I’ve read about 4 different novels all of which at some point deal with cancer. And this was certainly not something I was seeking out. It just happened. It’s just there. I get that. Basically if you live long enough, you’re either going to be directly affected or someone you love will.

So this makes cancer a bit different from most other disease. Because if it’s something we can easily connect to on a personal experience level then we are bound to have strong feelings about it.

Let me back up a bit – so I was watching Wish I Was Here this weekend and I had a small panic attack. There was the proverbial death scene and while I wasn’t completely emotional saturated, I felt the walls unhinge and sort of creep up on me. I felt my chest get tight. I felt the panic setting in.

My husband noticed and offered to shut it off, but that felt silly. I can’t censor myself from every cancer/death scene in the world. I’ll never read or watch anything again, right?

This isn’t the first time this happened. The first time was during an episode of Orphan Black. My favorite character Cosima got sick. (No spoilers!)

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I was watching this during a time that my parents were staying with me for my mother’s chemotherapy. The big issue was that they didn’t know about my cancer. I kept it a secret for six months because my mother was scheduled to have a stem cell procedure and I was afraid if she knew about me, she wouldn’t go through with it. (I was right.) So aside from dealing with my own diagnosis and my mother’s illness I was also carrying around this boulder-sized secret. Needless to say when the character Cosima was sick, it was bad for me.

I’ve made an effort to figure out how to keep these things at a distance. How not to feel immediately dismantled by a character’s death in a book or a movie or a television show.

But it’s hard.

And part of why it’s hard is because people have a really significant connection to cancer. Significant connections lead to strong feelings.

Strong feelings, unfortunately can lead to judgement.

This article was published by the New York Times yesterday. It’s about a treatment called cold capping. Cold capping is essentially an option for chemotherapy patients that prevents hair loss by slowing down the metabolic rate in hair follicles reducing the effects of chemotherapy on the scalp. Basically, chemo kills quickly dividing cells, like cancer cells, (good) but also hair follicles and nails (bad).

This treatment is expensive, not covered by insurance, and completely optional. What it does is provide some people with a degree of privacy should they want it. And also a degree of normalcy. You would think that something like this would only be met with appreciation. It’s there for people who want to use it.

That is not the case.

I’m going to post here some of the facebook comments that accompanied the article. To preserve people’s privacy I removed everything but the text which is unchanged.

“My hair was the last thing I was concerned about.”

“Main concern was saving my life!! I’ve met other patients whose value system was as superficial. Could not relate at all.”

“This is like us soldiers liberating internment camps and giving the women in rags makeup.”

Honestly, saving hair should be the last things on your mind. So what if your bald for a little while? You’re beautiful no matter what!”

“I passed on this. My health was more important than my hair.”

“It’s just hair, and thankfully should you become a survivor, it will grow back.”

“It’s just HAIR already! I survived and now have tons of hair, more importantly – lots more LIFE ahead of me!”

“Be a free spirit and don’t give a f#%k”

“Vanity in the face of death. Only in America.”

“I was more concerned with living.”

“Having cancer doesn’t excuse vanity.”

“Vanity knows no bounds”

If you’re surprised by the judgement then you haven’t spent much time in Cancerland.

Angelina Jolie had a preventative mastectomy when she was diagnosed with the BRAC gene. Those who have it (approximately 10% of the population) have an 80% chance of getting breast cancer. Preemptively removing healthy breasts is a terrifying and difficult decision.

These people are collectively referred to as previvors because they are survivors of predispositional cancer.

This too, even in the cancer community, was met with a snort of disgust. On a forum I came across the following quote: “having a predisposition and getting the disease should not be compared.”

Really? Because they both sound pretty damn scary to me. Cancer sucks. Mastectomy sucks. Fearing cancer sucks. Family history sucks. Let ’em in the pink tent. Unfortunately, there’s plenty of room.

Which brings me back to Wish I Was Here. There’s a great line in that movie about being brave. Zach Braff’s character is admonishing his brother for being cowardly in the face of his father’s impending death and he says:

“Do you know what the problem with living in a fishbowl is? Everyone can see you.”

The internet is a fishbowl. Cancer is a fishbowl. Privacy, control, and vanity are not the same thing. You don’t get a special reward for being “only” Stage 1. Trust me. And on the flip-side invasive cancer is not a platform from which you can stand on high and look down on people who don’t want to become a statistic.

Be nice to each other. Life is short. For some, it’s even shorter.

Peace, Love and Starbursts,

Ally

Greetings from Niflheim!*

25 Feb

That about sums up my opinion on winter these days. We used to be buddies. Not so much anymore.

I can’t remember the last time I looked forward to a spring as much as I am looking forward to this one.

So in other news, I’m still alive and well and managing and all that fun stuff post-everything. And I’m still hearing from people who have either read the cancer blog or something stupid I said on twitter and who contacted me about it. I think that’s really great because the whole point of writing what I did, and you know, LIFE is to make connections with other people. To say: this looks like that. I feel like you. You’re like me.

Connections.

I’ve been writing a lot lately. Still working on Palimpsest, the scifi novel that might kill me first, and that’s going well. I almost want to say really well but I don’t want to jinx it so mums the word on P——–t.

Mums, I tell you.

I have also been working on poems which has been good cause the part of my brain that writes fiction and the part of my brain that writes poetry are not the same part. My poetry part has been snoring like a log for the last few months. It’s good to see it still works (after large quantities of tea, begging and bribery, that is).

Some people go to support groups or talk to psychologists. I write poems and share them with strangers on the internet. Po-tae-to, Po-tah-to. Connection is a powerful coping tool.

Here’s a few that were lucky enough to find a home in this world. I am eternally grateful to all the editors who took these poems and helped share them. (See above about that whole connections thing.)

After Diagnosis, Chemo and Dog-Eared are all here at The Blue Hour.

Exam Table Paper is here at The Commonline Journal

Ten Years Later, Allyson Stop It and And Yet are here at Dead Snakes.

It feels good to get these guys out there. Like I’m folding up the fear and anxiety into little origami sailboats and setting them adrift into the world. I feel better without them. Lighter. I was writing in my journal the other day about February feeling like the first “normal-ish” month I’ve had since diagnosis. Not like normal-normal, because I still don’t get through a day without thinking about it but normal enough, I guess. Cancer isn’t my first though out of bed and it isn’t my last at the end of the day. It usually shows up somewhere in the middle. And I’ve had more good days than bad (by a lot). More good days than sad days. More good days then I Hate The Universe Why Is This My Life What Did I Ever Do To You days. And I’m working hard on not kicking myself when I do throw little tiny pity parties. It happens. *Toots Party Horn*

And finally, I have a trip coming up.

It will involve lots of these:

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That’s all I’m saying.**

But before I go I just wanted to mention Zoe Keating. I’ve mentioned Zoe on here before telling you how you should really go buy her album for six little dollars on her website. It’s worth about ten times that in my opinion. Last May, Zoe’s husband was diagnosed with cancer. Pretty much everywhere – brain, lungs, bones, liver. After a brave fight, he passed away at home on February 19th.

Zoe is a working artist that I have the utmost respect for. I’ve never met her. I just think she puts something beautiful into the world. And right now, she’s lost the most beautiful thing she had. As a stranger on the internet I can’t really do much except for share her music and encourage you, my friends, to listen.

This is Escape Artist. I would consider it a feat of incredible emotional strength if you could listen all the way through and not be moved. Also, that means you’re probably a robot. Good luck with that.

You can download her album here. $6.00 for beautiful art.

In the meantime, make something beautiful for yourself. And be nice to each other

Peace, Love and Starbursts,

Ally

*For those of you curious, Niflheim is a cold mythological place in Nordic stories. It’s also called New York City.

**No lectures allowed on alcohol and recurrence rates. Trust me I read all the literature. Life requires a little risk. It’s called LIVING.

I run, therefore I am

2 Feb

I started running.

Three times a week. Three miles. Thirty minutes.

It’s been about a month and while I’ve definitely hit a wall (figuratively though literally wouldn’t be a shock either) I’m still out there for a half hour in the freezing cold for three (long sometimes very long) miles.

I’ve managed to slip on the ice at least 4 times, possibly causing this nagging shoulder pain I’ve had. I’m tripped on the sidewalk at least twice. I’ve been sprayed with salt from a street salting truck and I’ve been honked at by at least one bus for taking too long to get up the hill by the bus stop.

But I’m still running.

Regular exercise and a healthy body weight will reduce my chance of a cancer recurrence. So yes, this is doctor ordered but behind that it’s something that I used to do that I miss doing.

I used to run with my dad when I was a kid and into my teenage years. He taught me to push harder going uphill, to relax and lengthen your stride going down. He taught me how to pay attention to my breathing so I don’t get a stitch. We would go after I was done with school and he was home from work. We’d go on weekends. We didn’t talk much. We just ran together. Even when we got to the driveway, breathless, we would just exchange a look and he’d say “You okay?” and I would nod, leaning over to stretch and catch my breath. That was the bulk of the talking.

You okay?

Yes.

And it was more than enough. In fact, whether it was around the neighborhood or a 5K, running with my dad is one of my favorite memories of growing up.

That was when exercising was fun. It was something we did together.

Now? Well, it’s a lot harder as an adult. But I still follow his rules. Long strides down the hill. Watch your breath. No quitting going uphill.

But I never joined a gym because I was self-conscious. Even at my thinnest I never felt thin enough. Ever.

I think that sucks. And I know I’m not the only one.

So imagine my delight when I saw this video, made by SportEngland a UK government agency as part of its This Girl Can campaign. I think it hits the spot.

Now they just need to make one for all the guys out there that need a little boost, too.

And Yet….

21 Jan

Over the last seven months I’ve written a lot of poems about cancer and all that sad sack stuff. I’m not going to post them all here. I plan on sending them out and/or hopefully putting together a new poetry book.

But this one is for Jay. Because everyone should be as lucky to have a love like this.

And Yet

there are still moments like this
where I am utterly still
and I can feel my hands moving in sync
with my mind
the way they were supposed to move.
Together.
Not like lighting followed by thunder.
Not separate.
Not like double vision,
a drunk missing the keyhole
the way I feel like my body
is no longer mine
but instead
the enemy
but not today
as I lift
the ice cream cone
you bought me
to my lips
and all of Manhattan
raises in one voice to
sing your praise, my love.

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