Giving Breast Cancer Pink the Middle Finger

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Susan Rahn Stickit2Stage4 breast cancer

[by Susan Ashline]

In the thick of Breast Cancer Awareness Month, one woman living with the disease is engaged in hand-to-keyboard combat against the color pink.

I remember when Susan Rahn followed me on Twitter. As with all my new Twitter follows, I checked to make sure her account wasn’t spam, my only barrier to following back. It wasn’t.

But I didn’t want to follow her back.

Her cover photo was skeleton hands with the middle fingers sticking up, pink ribbons wrapped around the bones. Her Twitter handle: @Stickit2Stage4. Susan had metastatic breast cancer, which is cancer that has spread to other organs. And I saw death. My instinct was to distance myself. I wondered, briefly, how I would feel if I’d gotten to know her and she died. I didn’t want to risk feeling hurt. Twitter suggests followers based on who you follow, and I anticipated an onslaught of follows from women who were waging a futile fight for their lives. I foresaw my breath squeezed out by a digital feed full of doom. And most of Susan’s tweets were about metastatic breast cancer. I thought – I have nothing to offer her.

Eventually – hesitatingly – I did follow her back.

Still, I ignored her.

In August, I found myself at the New York State Fair facing a wall of women captured in photo frames with pink matte board, smiling and lively. But most were no longer alive – they were dead. It was a breast cancer victim/survivor display that I stared at unflinchingly, reading the women’s profiles and silently wishing each back to life.

A week later, I saw Susan’s tweet: “Wearing a color does nothing. Try REAL actions. Make a meal, clean – that is support.”Susan Rahn Twiitter breast cancer awareness tweet

That made sense. I could do that. I knew how to clean.

I messaged Susan through Twitter, offering to clean. She replied – swiftly – with a rant against what she called “the pinkification” of breast cancer. “Who does that help?” she wrote. “So I tweet and call out the BS for what it is, in the hopes that I can maybe change the landscape of the public’s perception of breast cancer.” She ended with, “I deeply appreciate your offer. I promise to let you know if I do need help. I’m sure my time is coming.”

The corners of my mouth instantly mirrored the frown-face emoji that punctuated her last sentence.

I had been under the impression a portion of proceeds from sales of pink items went to breast cancer research, and I told her so.

She said that was a myth, “And if money does happen to go to research, less than 2% goes to fund research for metastatic breast cancer; the cancer that kills.” She wrote that 113 women die every day from breast cancer; a projected 40,450 men and women in the U.S. this year. “Those are the same numbers as the height of the AIDS epidemic, but no one puts any urgency on breast cancer research because they focus on awareness.”

I offered to write about Susan’s war on the pinkification of breast cancer. I could do that. I knew how to write.

No sooner did she accept my offer, that I got a message from Jeff Rahn, another of my Twitter followers: “As you probably picked up on, Susan is very passionate about the various ‘pink scams’ out there and is trying so hard to get actual research instead of awareness campaigns. We are all aware.”

She was his wife, he said, and a great mom and step-mom. And he thanked me for reaching out to her. “Just acknowledging a terminally ill person means more than you can imagine. So often they are forgotten.”

When I called Susan for the interview, I confessed my reluctance to follow her on Twitter. I wondered aloud whether my reaction to shut her out was not uncommon, and perhaps the reason her message, of the need for more emphasis on research, wasn’t reaching the general population.

“Which is why I’m so loud and obnoxious,” said Susan, acknowledging my reaction wasn’t a surprise.  Social media users labeled her angry and bitter, she said. “They think I’m angry and bitter because of my diagnosis. But ya know what? Anger and bitterness gets sh*t done.”

Susan said she feels awareness campaigns are partly to blame for the instinct to block out those who are terminal. “The message has been that breast cancer is a treatable and curable disease. If you catch it early, like if you catch a cold, you deal with the symptoms, treat it and go on with your life. But that’s not the case, because 6-10% of women – like me – get diagnosed with stage four from day one. And you don’t necessarily have to have any prior family history.”

Maybe I’d shut the door on Susan’s Twitter page because she represented what I feared – that she could be me.

Lingering rib pain led to Susan’s diagnosis of stage four breast cancer just months after getting a clean read from a routine mammogram. She was a newlywed, not quite a year into her second marriage. She had one son, her only biological child. Genetic testing turned up no markers for breast cancer. She was 43 years old.

She was told she had months to live. It was August 2013.

Susan continues to fight for her life – and the lives of others – by advocating for metastatic breast cancer research. She is the editor of a newly-formed digital magazine, The Underbelly: Illuminating Breast Cancer’s Darker Side (TheUnderbelly.org), which launched an October Twitter campaign (#WhyIsThisPink) to make the consumer aware that many merchants collecting money from selling pink items are simply lining their own pockets.

“It’s okay if something’s pink, as long as the money is going to the right place,” said Susan, who hopes The Underbelly will draw an audience well beyond Breast Cancer Awareness Month. “We want to bring the ugliness and the things that people don’t want to talk about into the light. It’s not all pink and fun, and it’s not a sorority. The narrative needs to change.”

Author’s note: I’ve since learned a lot about breast cancer pink. Susan’s opinion doesn’t stand alone – far from it. Voices can be heard all over the internet calling for an end to the “pink” campaign and a focus on dollars for research to find a cure. The pink campaign was successful in raising awareness. Now, it’s time to move it forward. #BreastCancerRealityCheck

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What Does Your Front Porch Say About You?

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[by Susan Ashline]

We walked door-to-door this week in what is known as a “bad part of town” in the city of Rochester. I’m familiar with the street name from my days as a news reporter. It was always on the scanner; shootings, stabbings, and miscellaneous crimes.

In spots, the patch of lawn separating each house could be measured in inches and not feet. We saw one garage that had a house number. We saw houses with broken steps and broken siding and peeling paint. There were broken windows, broken doors.

But there were fabulous porches; well-kept porches and elaborate porches. And there were amazing gardens in front of them that rivaled any you’d see at an admission-entry conservatory. There were porches adorned with flowering baskets more stunning than those at displayed at landscaping businesses. One garden showcased a marvelous variety of colorful flowers, weed-free rows, and an immaculate brick walk-way lined by solar lights.

And one porch had a neighbor on it asking the other neighbor if she could borrow the key to another neighbor’s house to check on it while they away, because she didn’t have the neighbor’s key with her. “It’s that kind of neighborhood,” she told me cheerfully, and smiled as she said it.

Porches had like-new bench swings and patio furniture. One had a hand-designed piece of art stuck into the ground at the base of the front steps; nothing more than twisted metal with blue glass bottles hanging from it, but it was attractive and unique. Most of the porches had new looking placards with painted flowers or sayings, or simply announcing “welcome.”

What does that say about a person?

Had I walked onto dirt-covered, unornamented porches with rotting, wooden furniture, it would’ve gone unregistered. But the porches . . . I noticed the porches.

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Cheryl’s Shenanigans (in the Monroe County Executive’s Office)

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[by Susan Ashline]

As attacks on Cheryl Dinolfo’s coiffure make way for assaults on her integrity, it’s timely to update my squelched efforts to get public information connected to her husband, a county court judge.

Stories on the Monroe County Executive’s questionable role in the recent I-Square/COMIDA scandal go down like dry toast. I’ll try to make my read more palatable. Come along on this fun (if not troubling) little exercise in the machinations of county politics. Put yourself in the driver’s seat by clicking on the linked text.

I’ve completed a manuscript of my first book, which is currently under review by literary agents. A Jacket off the Gorge is the true story of a criminal case handled by Monroe County Court Judge Vincent Dinolfo. He is married to Monroe County Executive Cheryl Dinolfo. The judge has been made aware of the manuscript. He hasn’t read it, of course, but he knows how it reads. He was there.

Here’s a snapshot of one chapter: Judge Dinolfo reverses a decision by a higher court judge (State Supreme Court Judge Alex Renzi) only to rescind it weeks later, after admitting that striking down Renzi’s ruling meant deciding Renzi had acted improperly.

In October 2012, Judge Dinolfo requested – and received – a disc containing recorded jail calls between myself and a defendant (the subject of my book). Without giving a reason publicly, Judge Dinolfo listened to these recordings while the defendant’s case was still pending before him; prior to sentencing.

I want the disc.

According to Robert Freeman, Director of the state’s Committee on Open Government, I am entitled to the recordings. Because I was a party to the phone calls, the county cannot deny my request based on “invasion of privacy.” I cannot invade my own privacy.

This past October, while Cheryl Dinolfo was stumping for county executive, I filed a Freedom of Information Law (FOIL) request to get the disc that was in her husband’s hands. It went ignored. After Cheryl Dinolfo took office I tried again, in many different ways, to get a response to my request. It continued to go unanswered.

Eventually, I emailed an appeal on January 15 to William Napier, Dinolfo’s Communications Director who’d previously ignored all of my contacts. I blogged about it within 24 hours. And the blog got shared all over social media by former news colleagues and others. And I tweeted it to Cheryl Dinolfo’s Twitter page and to her staff. My blog got thousands of hits, leaving me rolling in 3¢ per day revenue from Google AdSense.

The following week, I received an envelope in the mail from the county post-marked January 20. Inside was a letter dated January 14, a supposed response to my initial FOIL request from months earlier.

Isn’t that fantastic(al)? It either takes a county employee six days to drop an envelope in the mail, or the letter wasn’t actually written on January 14, but predated.

I had asked for (1) the jail visit log showing the dates of my visits with the defendant during a specific time span, (2) the jail phone log showing only the calls made to me, and (3) the phone recordings (particularly the disc in Judge Dinolfo’s possession). I was sent the visit log, but not the phone log. And though I requested the visit log from October, I was not sent any from October, but was sent several from November. Also included was a bill for the November logs I never requested. I guess that happens when you’re hurriedly photocopying just any “stuff” you can get your hands on in order to get a letter in the mail to stop the flap.

As for the call log and the phone recordings, I was flat out denied. How can I be denied the phone log based on “unwarranted invasion of [my own] personal privacy,” yet sent the visit log (albeit the wrong dates)?

At least I had Napier’s predated reply, so I took the opportunity to write a champion FOIL appeal to Deputy County Executive Thomas Van Strydonck citing all sorts of case law which undeniably proves I am entitled to the information requested. And of course Van Strydonck couldn’t reject it (I foolishly thought). He is, after all, a former judge.

After patting myself on the back, I mailed the appeal (read it here and here, and be equally as proud).

Soon after, I got an envelope from the county post marked February 12 (that it’s torn is testament to how excited I was to finally get my request filled), and inside was a letter from Van Strydonck dated… wait – dated February 12? Unlike Napier, he was able to mail it the same day he sealed the envelope.

To my surprise, it was not only a denial, but worded the same as Napier’s — verbatim — a couple sentences handily dismissing my request, giving the appearance my appeal was never even read. Van Strydonck’s letter even sloppily cited an incorrect date. His letter used vague language, side-stepping the mandate that the office detail reasons for the denial. It used the same ridiculous and inapplicable “invasion of privacy” excuse, yet did not state which records were denied based on this.

At the recommendation of Robert Freeman, director of the Committee on Open Government, I’d included a request for written certification if any of the records I requested no longer existed. That is my legal right. However, I received no certification. Instead, the letter claimed the phone recordings were only available to me through subpoena, citing civil court law (something Freeman said is incorrect, as civil court law is unrelated to FOIL).

Then – something curious happened. My website visitor plug-in showed a visitor was referred to my site by Google using the search terms “Susan Ashline Judge Vincent Dinolfo.” How odd. Who would ever have reason to put those two names together in a search bar? The visitor came from Irondequoit, the town where Cheryl and Vincent Dinolfo reside. It could be anyone. (Thanks to all of you for stopping by, and — smile, you’re on IP surveillance).

After that, something even more peculiar happened. An attorney who Judge Dinolfo knows to be a friend of mine told me the judge pulled him aside one day in the Hall of Justice and said he’d gotten a FOIL request for the disc. This friend, who has no personal relationship with Judge Dinolfo, says the judge told him he no longer has the disc, that he’d gotten rid of it.

Yet, I got no certification the disc was no longer in existence. Instead, I got a denial stating I would need to subpoena it. And how did Judge Dinolfo know about my FOIL request? If I was required to get the recordings by subpoena, why would county staff approach the judge with my request for the disc?

Why should anyone care about my story? Because one day, they might want to exercise their right to obtain public information. I could file legal action to get the information I seek, but I don’t have the money to throw away fighting for that which I am entitled. Rights are only available to those who can afford them. As citizens, we expect – and deserve – better than public officials who cherry pick which individuals’ rights to honor, and which to trample.

 

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“Kiss me or die!”

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For years, reporters in the WHAM 1180 radio newsroom in Rochester, New York, documented the wackiest emergency calls overheard on the police scanner:



Man blew a kiss at the complainant. Complainant didn’t like that. They argued. Man came back with a shotgun.”

Youths dropping lit matches into gas tanks on St. Paul.”

The occupant from the car is chasing the hood across the expressway.”

Pregnant cat in a box near Conrail.”

Frank and Paul aren’t getting along because Frank wants money and Paul won’t give it to him.”

The man with the shopping cart is now urinating on top of the garbage that’s in the shopping cart.”

Suspicious looking footprints in the snow.”

Two gentlemen fighting over darts at Spenders.”

According to the mother, the father was beating the child for medical reasons.”

DISPATCHER: “Long Pond and Lyell investigating kids in the dumpster.” COP: “10-4. Kids in the dumpster. Wear your gloves.”

Complainant ran over an opossum who is still alive and looking at her funny.”

Woman walking a dog in the middle of the expressway.”

Raccoon fell through the ceiling.”

Man’s been drinking for three weeks, requesting an ambulance for detox.”

Male, white, no clothes, covered in mud, walking around the rear of the War Memorial.”

He’s throwing bottles of shampoo all over the store.”

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Chest compressions! 1… 2…

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For years, reporters in the WHAM 1180 radio newsroom in Rochester, New York, documented the wackiest emergency calls overheard on the police scanner:


230 Lyell for a squirrel who fell off the roof and is injured.”

Female says the male has been there since 1900.”

The Hell’s Angel I’ve been having trouble with? He puts up a fight for a small guy.”

She puts on some kind of show for passing males.”

Apparently she has a hammer and is sitting in the kitchen.”

Male won’t come out of the pond. Apparently now he’s taken off all his clothes and swimming around naked.”

Porta potty on fire.”

Suspect’s hair was in two Mickey Mouse balls.”

Male wearing a mini-skirt.”

Report of burnt popcorn in the microwave.”

Naked female walking toward Driving Park. She’s now put her clothes on. She’s walking with a heavy set man.”

He’s a black male. Goes by the name of Cujo. Jay and Smith for Cujo.”

Guy is being a moron. We’re gonna wind up towing his car.”

He has one leg, and he’s tied to a bench.”

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Let’s Get This Party Started!

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For years, reporters in the WHAM 1180 radio newsroom in Rochester, New York, documented the wackiest emergency calls overheard on the police scanner:


The people on the party barge can’t get the boat started.”

The hospital put a cork in his nose, and that’s why it’s bleeding now.”

The jumper missed… and hit the dirt.”

Complainant says he’s been knocked over due to the wind.”

A 325 pound male says the devil told him he was going to die tonight.”

I decided not to arrest him, because I’m a nice guy. But I can go back there and arrest him if you want me to.”

There’s a man laying on the street under a green blanket, nearly hit by a street cleaner.”

Assault. She hit him with rubber cement.”

Woman has a male in her backyard, lying in her hammock. Now sitting in her chair.”

Suspect’s armed with a staple gun.”

She is now pregnant from the 18-year-old sister’s boyfriend.”

Can we get a tow truck? Apparently two guys were racing and didn’t know the road ended.”

There’s bats in the house. There’s no emergency, and police don’t respond to bats.”

A man at the residence pulled the phone out of the wall. He’s demanding they give him 20 dollars or he won’t give them the phone back.”

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“Apple sauce boiling over.”

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For years, reporters in the WHAM 1180 radio newsroom in Rochester, New York, documented the wackiest emergency calls overheard on the police scanner:


146 Park Avenue for the apple sauce boiling over.”

Trying to kill himself by drinking alcohol.”

Don’t bother us. We’re on the Ho Chi Minh Trail.”

Seeing little green men running out of the shower and tiny children running around the house.”

There’s an issue regarding poop from a dog.”

Male head-butting a road sign.”

The victim is described as being in his underwear.”

Male stole some things from the store. He’s hot footin’ it across the bridge now. He’s munchin’ on the ice cream he didn’t pay for.”

Reportedly took complainant to get some food. Wouldn’t let her out of the car. Pulled off her wig.”

Stole some Slim Jims from the store.”

Suspect seen rolling garbage cans down the roof.”

Man on telephone poll changing cable TV wire.”

Annoying kids on the trampoline.”

A 6-foot male crawling around on the parking lot.”

A man in a snowbank with one shoe. Apparently his friends left him there. He lives in Geneseo.”

Possible intox. Man standing at a parking meter. He’s been putting money in for about 20 minutes.”

Two people engaging in sexual activity on the hood of their car.”

Man yelling ‘Yo!’ in front of a building.”

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“A male driving inside a vehicle.”

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For years, reporters in the WHAM 1180 radio newsroom in Rochester, New York, documented the wackiest emergency calls overheard on the police scanner:


A male driving inside a vehicle.”

He’s having dreams that he wants to kill the President and whatnot.”

Man sent to Burger King by a temp agency, got beat up once he got there.”

Person hanging out of a window, person inside holding onto his feet, security watching.”

Suspect in car trying to push over a porta john.”

Male robbed something from the store. Left his shirt and ID behind.”

The squirrel was bitten by a dog, and now the squirrel is running around in circles acting strange.”

Roofers are threatening to tear off the newly installed shingles.”

Current bat policy – you don’t respond to anything, right?”

Suspects took the victim’s pants and boots, leaving him naked except for a hoody.”

Don and Mike are talking about Lonsberry.”

A left eye injury. Injured by a skunk.”

Resident believes someone in the mob is waiting to get him outside.”

Three male blacks dressed in women’s clothing took a 2-liter of Sprite.”

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