Friday, June 29, 2012

TOBEY & JULIE

It's Friday!  I am going to be away for the weekend and will not be returning until Wednesday.  Independence Day.  July 4th for those who may not be US residents.  I expect to be on a beach in Puerto Rico for a couple of days.

It has been FAR TOO LONG since I've removed my body, mind and soul (all at the same time, that is) from its present surroundings for a trip with no planned agenda.  I'm leaving this evening.  I'm turning a corner and frankly, I don't know what's on the next street.  Wouldn't you agree, I've been a bit on the cryptic side with a couple of comments and cracks in recent posts.  Maybe I've not been and I've thought about saying cryptic-ish stuff..... No matter.....  A wonderful weekend to all.

I will be totally and completely unplugged until sometime Wednesday night or Thursday.  I'm not sure about my travel arrangements.  I'm not packed despite the fact I have to be out of this house in eight hours.  Welcome to Chemobrainland. Is that a version of Candyland?  Can I turn it into a version of Candyland?  That will be one of the things I ponder while I'm on the beach..... slathered in sunblock or seated in the shade.  A glass of water on one side for hydration and a glass adorned with some sort of umbrella on the other side.

If I may impose on you to share these events..... Two friends head up two different grassroots organizations and each of them will be having fundraising events.  If you are so inclined and in the area.... For you consideration... or please, DO share if you are an out-of-towner and you know anyone in this neck of the woods.......

They are in date order:

The first event is on July 28th.  It's a high profile party in the Hamptons featuring some equally high profile guests.  Julie Ratner is a member of NBCC.  She is also a friend of my dear yoga instructor and it was through Lorraine that I was introduced to Julie.  I met Julie in DC and we got a chance to spend a bit of time together.  Julie's sister died of Metastatic Breast Cancer.  The Ellen Hermanson Foundation was established in Ellen's memory.  If you have no plans on July 28 and you can find your way to the Hamptons, tickets are available to anyone who wishes to attend the event.

Scroll below to the second fund raising event for Previvors and Survivors.  I met Tobey through social media, specifically, twitter.  We met for lunch and Tobey is a true gem with a huge heart.  She runs a grassroots, 100% volunteer driven non-profit to help women who are recovering from surgery.  She has a fabulous website which you can uses anonymously.  Since Previvors and Survivors involves a sensitive hereditary issue, the website is set up in such a way that no one need identify themselves.  Tobey's masquerade ball is in October.  Save the date AND, if you have anything you may be able to donate as a raffle prize, please go to the website and send Tobey an email.  Every dime raised goes to help a woman in need.  Everything counts and every little bit helps.

Two local organizations....... worthy of neighborly support.  If you are in the NYC/LI area, please consider joining the fun!








Thursday, June 28, 2012

NORA EPHRON, YOU WILL BE MISSED

I loved Nora Ephron.  I had no idea she was sick.  I'm beginning to think SOME celebrities are very good at doing the right thing:  saying nothing (like Kathy Bates) or sharing all (like Farrah Fawcett).  The ones in between?  Honestly, I don't have much use for them.  I'm not going to get on a soapbox.  I've done enough of THAT in the past week.

I truly wish to wax poetic about Nora.  Before I go into the fact that "When Harry Met Sally" is one of my most favorite movies of all time, I want to share another delightful piece of Nora brilliance.  It is a stage show adapted by Nora and her sister, Delia.  Based upon the book by Ilene Beckerman, Love, Loss, and What I Wore is a poignant, touching live show.  I recall going to the show with my very dear girlfriend.

The show features a rotating troupe of actors reading the intimate (real life) stories of a number of women.  Toward the latter part of the show, one sentence into a new story, I realized it was about Geralyn Lucas.  If you don't know who she is, Geralyn is the author of the book turned movie, Why I Wore Lipstick to My Mastectomy.  The movie was close to my heart because it first aired in October 2006 when I still had surgical drains, tissue expanders and was awaiting my first round in the chemo ring.  The things you never forget.

I remember sitting beside my girlfriend (who happens to be a cancer patient, too, just not a pink patient) and I recall the way my breath got stuck in my throat as I grabbed for a tissue to dab at my eyes.  Some things simply set me off.  I think they will set me off no matter how much distance there is between me and my diagnosis.  It's breast cancer fallout.  Yes, it IS that simple.  And NO, I'm not going to pretend it doesn't exist or that it doesn't STILL happen on occasion.

This night out was over Halloween weekend and we stayed in NYC for the night.  After a few too many cocktails in a hotel lounge where the windows are great for people watching, I recall beckoning The Grim Reaper from outside.  I didn't think he'd actually have the guts to walk into the lobby of the hotel but he was at my side within seconds.  Yes, I kissed The Grim Reaper and immediately, I provided him the address of a few homes he might like to visit.  October 2010.  Grim Time.  Grim Reaper.

Nora Ephron.  There are plenty of articles to choose from so I'll leave you to your own devices to Google her name and read from the publications of your choice.  People are beginning to talk about favorite Nora quotes and to talk about her movies.  I don't know if she wrote the line but obviously, "I'll have what she's having," must rank pretty high on the list.  I love Harry/Sally.  Is it the story?  Possibly.  Is it Billy Crystal?  Likely (he just makes me laugh all the time).  Meg Ryan? Love her too.  The fact that it's set in NYC and I can recognize some of the places?  That's always fun.  That movie was from 1989.

Twenty years later, it was Julie and Julia.  I did not see that movie until I was getting ready to launch this blog and I was encouraged by three different people to just watch the movie.  I couldn't imagine what the hell Julia Child could possibly mean to me in the context of launching a blog but by the the time the third person said it, I finally watched the movie. Yes, it gave me a boost of encouragement to actually begin this blog and for that, I am truly thankful.

That's my biggest pull toward Nora Ephron.  There are many fabulous quotes, but given the nature of this blog, I'm going to stick with one she used at Wellesley College in her 1996 commencement address.  You tell 'em, Nora:

“The Wonderbra is not a step forward for women. Nothing that hurts that much is a step forward for women.”

POSTSCRIPT:

In my traveling and trolling, I happened upon an article she wrote in 1972 for Esquire Magazine.  First, let's take a moment and remember ESQ is primarily a men's magazine.  Then, we can appreciate the fact that she even wrote for the magazine.  NOW, let's go one step further.  Her article?  Again, it's in keeping with the content of this blog.  As you read, remember, she did NOT have breast cancer..... and yet, the issues seem eerily similar.  Wouldn't you agree?

A Few Words About Breasts
The essential essay from the late great writer's Esquire column
By Nora Ephron


Read more: http://www.esquire.com/features/nora-ephron-a-few-words-about-breasts-0572#ixzz1z2hfWVEk






Published in the May 1972 issue of Esquire

I have to begin with a few words about androgyny. In grammar school, in the fifth and sixth grades, we were all tyrannized by a rigid set of rules that supposedly determined whether we were boys or girls. The episode in Huckleberry Finn where Huck is disguised as a girl and gives himself away by the way he threads a needle and catches a ball — that kind of thing. We learned that the way you sat, crossed your legs, held a cigarette, and looked at your nails — the way you did these things instinctively was absolute proof of your sex. Now obviously most children did not take this literally, but I did. I thought that just one slip, just one incorrect cross of my legs or flick of an imaginary cigarette ash would turn me from whatever I was into the other thing; that would be all it took, really. Even though I was outwardly a girl and had many of the trappings generally associated with girldom — a girl's name, for example, and dresses, my own telephone, an autograph book — I spent the early years of my adolescence absolutely certain that I might at any point gum it up. I did not feel at all like a girl. I was boyish. I was athletic, ambitious, outspoken, competitive, noisy, rambunctious. I had scabs on my knees and my socks slid into my loafers and I could throw a football. I wanted desperately not to be that way, not to be a mixture of both things, but instead just one, a girl, a definite indisputable girl. As soft and as pink as a nursery. And nothing would do that for me, I felt, but breasts.

I was about six months younger than everyone else in my class, and so for about six months after it began, for six months after my friends had begun to develop (that was the word we used, develop), I was not particularly worried. I would sit in the bathtub and look down at my breasts and know that any day now, any second now, they would start growing like everyone else's. They didn't. "I want to buy a bra," I said to my mother one night. "What for?" she said. My mother was really hateful about bras, and by the time my third sister had gotten to the point where she was ready to want one, my mother had worked the whole business into a comedy routine. "Why not use a Band-Aid instead?" she would say. It was a source of great pride to my mother that she had never even had to wear a brassiere until she had her fourth child, and then only because her gynecologist made her. It was incomprehensible to me that anyone could ever be proud of something like that. It was the 1950s, for God's sake. Jane Russell. Cashmere sweaters. Couldn't my mother see that? "I am too old to wear an undershirt." Screaming. Weeping. Shouting. "Then don't wear an undershirt," said my mother. "But I want to buy a bra." "What for?"
I suppose for most girls, breasts, brassieres, that entire thing, has more trauma, more to do with the coming of adolescence, with becoming a woman, than anything else. Certainly more than getting your period, although that, too, was traumatic, symbolic. But you could see breasts; they were there; they were visible. Whereas a girl could claim to have her period for months before she actually got it and nobody would ever know the difference. Which is exactly what I did. All you had to do was make a great fuss over having enough nickels for the Kotex machine and walk around clutching your stomach and moaning for three to five days a month about The Curse and you could convince anybody. There is a school of thought somewhere in the women's lib / women's mag / gynecology establishment that claims that menstrual cramps are purely psychological, and I lean toward it. Not that I didn't have them finally. Agonizing cramps, heating-pad cramps, go-down-to-the-school-nurse-and-lie-on-the-cot cramps. But, unlike any pain I had ever suffered, I adored the pain of cramps, welcomed it, wallowed in it, bragged about it. "I can't go. I have cramps." "I can't do that. I have cramps." And most of all, gigglingly, blushingly: "I can't swim. I have cramps." Nobody ever used the hard-core word. Menstruation. God, what an awful word. Never that. "I have cramps."
The morning I first got my period, I went into my mother's bedroom to tell her. And my mother, my utterly-hateful-about-bras mother, burst into tears. It was really a lovely moment, and I remember it so clearly not just because it was one of the two times I ever saw my mother cry on my account (the other was when I was caught being a six-year-old kleptomaniac), but also because the incident did not mean to me what it meant to her. Her little girl, her firstborn, had finally become a woman. That was what she was crying about. My reaction to the event, however, was that I might well be a woman in some scientific, textbook sense (and could at least stop faking every month and stop wasting all those nickels). But in another sense — in a visible sense — I was as androgynous and as liable to tip over into boyhood as ever.

I started with a 28 AA bra. I don't think they made them any smaller in those days, although I gather that now you can buy bras for five-year-olds that don't have any cups whatsoever in them; trainer bras they are called. My first brassiere came from Robinson's Department Store in Beverly Hills. I went there alone, shaking, positive they would look me over and smile and tell me to come back next year. An actual fitter took me into the dressing room and stood over me while I took off my blouse and tried the first one on. The little puffs stood out on my chest. "Lean over," said the fitter. (To this day I am not sure what fitters in bra departments do except to tell you to lean over.) I leaned over, with the fleeting hope that my breasts would miraculously fall out of my body and into the puffs. Nothing.
"Don't worry about it," said my friend Libby some months later, when things had not improved. "You'll get them after you're married."
"What are you talking about?" I said.
"When you get married," Libby explained, "your husband will touch your breasts and rub them and kiss them and they'll grow."
That was the killer. Necking I could deal with. Intercourse I could deal with. But it had never crossed my mind that a man was going to touch my breasts, that breasts had something to do with all that, petting, my God, they never mentioned petting in my little sex manual about the fertilization of the ovum. I became dizzy. For I knew instantly — as na├»ve as I had been only a moment before — that only part of what she was saying was true: the touching, rubbing, kissing part, not the growing part. And I knew that no one would ever want to marry me. I had no breasts. I would never have breasts.

My best friend in school was Diana Raskob. She lived a block from me in a house full of wonders. English muffins, for instance. The Raskobs were the first people in Beverly Hills to have English muffins for breakfast. They also had an apricot tree in the back, and a badminton court, and a subscription to Seventeen magazine, and hundreds of games, like Sorry and Parcheesi and Treasure Hunt and Anagrams. Diana and I spent three or four afternoons a week in their den reading and playing and eating. Diana's mother's kitchen was full of the most colossal assortment of junk food I have ever been exposed to. My house was full of apples and peaches and milk and homemade chocolate-chip cookies — which were nice, and good for you, but-not-right-before-dinner-or-you'll-spoil-your-appetite. Diana's house had nothing in it that was good for you, and what's more, you could stuff it in right up until dinner and nobody cared. Bar-B-Q potato chips (they were the first in them, too), giant bottles of ginger ale, fresh popcorn with melted butter, hot fudge sauce on Baskin-Robbins jamoca ice cream, powdered-sugar doughnuts from Van de Kamp's. Diana and I had been best friends since we were seven; we were about equally popular in school (which is to say, not particularly), we had about the same success with boys (extremely intermittent), and we looked much the same. Dark. Tall. Gangly.
It is September, just before school begins. I am eleven years old, about to enter the seventh grade, and Diana and I have not seen each other all summer. I have been to camp and she has been somewhere like Banff with her parents. We are meeting, as we often do, on the street midway between our two houses, and we will walk back to Diana's and eat junk and talk about what has happened to each of us that summer. I am walking down Walden Drive in my jeans and my father's shirt hanging out and my old red loafers with the socks falling into them and coming toward me is... I take a deep breath... a young woman. Diana. Her hair is curled and she has a waist and hips and a bust and she is wearing a straight skirt, an article of clothing that I have been repeatedly told I will be unable to wear until I have the hips to hold it up. My jaw drops, and suddenly I am crying, crying hysterically, can't catch my breath sobbing. My best friend has betrayed me. She has gone ahead without me and done it. She has shaped up.
Here are some things I did to help:

Bought a Mark Eden Bust Developer.

Slept on my back for four years.

Splashed cold water on them every night because some French actress said in Life magazine that that was what she did for her perfect bustling.

Ultimately, I resigned myself to a bad toss and began to wear padded bras. I think about them now, think about all those years in high school I went around in them, my three padded bras, every single one of them with different-sized breasts. Each time I changed bras I changed sizes: one week nice perky but not too obtrusive breasts, the next medium-sized slightly pointy ones, the next week knockers, true knockers; all the time, whatever size I was, carrying around this rubberized appendage on my chest that occasionally crashed into a wall and was poked inward and had to be poked outward — I think about all that and wonder how anyone kept a straight face through it. My parents, who normally had no restraints about needling me — why did they say nothing as they watched my chest go up and down? My friends, who would periodically inspect my breasts for signs of growth and reassure me — why didn't they at least counsel consistency?
And the bathing suits. I die when I think about the bathing suits. That was the era when you could lay an uninhabited bathing suit on the beach and someone would make a pass at it. I would put one on, an absurd swimsuit with its enormous bust built into it, the bones from the suit stabbing me in the rib cage and leaving little red welts on my body, and there I would be, my chest plunging straight downward absolutely vertically from my collarbone to the top of my suit and then suddenly, wham, out came all that padding and material and wiring absolutely horizontally.

Buster Klepper was the first boy who ever touched them. He was my boyfriend my senior year of high school. There is a picture of him in my high-school yearbook that makes him look quite attractive in a Jewish, horn-rimmed-glasses sort of way, but the picture does not show the pimples, which were air-brushed out, or the dumbness. Well, that isn't really fair. He wasn't dumb. He just wasn't terribly bright. His mother refused to accept it, refused to accept the relentlessly average report cards, refused to deal with her son's inevitable destiny in some junior college or other. "He was tested," she would say to me, apropos of nothing, "and it came out a hundred and forty-five. That's near-genius." Had the word "underachiever" been coined, she probably would have lobbed that one at me, too. Anyway, Buster was really very sweet — which is, I know, damning with faint praise, but there it is. I was the editor of the front page of the high-school newspaper and he was editor of the back page; we had to work together, side by side, in the print shop, and that was how it started. On our first date, we went to see April Love, starring Pat Boone. Then we started going together. Buster had a green coupe, a 1950 Ford with an engine he had hand-chromed until it shone, dazzled, reflected the image of anyone who looked into it, anyone usually being Buster polishing it or the gas-station attendants he constantly asked to check the oil in order for them to be overwhelmed by the sparkle on the valves. The car also had a boot stretched over the back seat for reasons I never understood; hanging from the rearview mirror was a pair of angora dice. A previous girlfriend named Solange, who was famous throughout Beverly Hills High School for having no pigment in her right eyebrow, had knitted them for him. Buster and I would ride around town, the two of us seated to the left of the steering wheel. I would shift gears. It was nice.
There was necking. Terrific necking. First in the car, overlooking Los Angeles from what is now the Trousdale Estates. Then on the bed of his parents' cabana at Ocean House. Incredibly wonderful, frustrating necking, I loved it, really, but no further than necking, please don't, please, because there I was absolutely terrified of the general implications of going-a-step-further with a near-dummy and also terrified of his finding out there was next to nothing there (which he knew, of course; he wasn't that dumb).
I broke up with him at one point. I think we were apart for about two weeks. At the end of that time, I drove down to see a friend at a boarding school in Palos Verdes Estates and a disc jockey played "April Love" on the radio four times during the trip. I took it as a sign. I drove straight back to Griffith Park to a golf tournament Buster was playing in (he was the sixth-seeded teen-age golf player in southern California) and presented myself back to him on the green of the 18th hole. It was all very dramatic. That night we went to a drive-in and I let him get his hand under my protuberances and onto my breasts. He really didn't seem to mind at all.

"Do you want to marry my son?" the woman asked me.
"Yes," I said.
I was nineteen years old, a virgin, going with this woman's son, this big strange woman who was married to a Lutheran minister in New Hampshire and pretended she was gentile and had this son, by her first husband, this total fool of a son who ran the hero-sandwich concession at Harvard Business School and whom for one moment one December in New Hampshire I said — as much out of politeness as anything else — that I wanted to marry.
"Fine," she said. "Now, here's what you do. Always make sure you're on top of him so you won't seem so small. My bust is very large, you see, so I always lie on my back to make it look smaller, but you'll have to be on top most of the time."
I nodded. "Thank you," I said.
"I have a book for you to read," she went on. "Take it with you when you leave. Keep it." She went to the bookshelf, found it, and gave it to me. It was a book on frigidity.
"Thank you," I said.

That is a true story. Everything in this article is a true story, but I feel I have to point out that that story in particular is true. It happened on December 30, 1960. I think about it often. When it first happened, I naturally assumed that the woman's son, my boyfriend, was responsible. I invented a scenario where he had had a little heart-to-heart with his mother and had confessed that his only objection to me was that my breasts were small; his mother then took it upon herself to help out. Now I think I was wrong about the incident. The mother was acting on her own, I think: that was her way of being cruel and competitive under the guise of being helpful and maternal. You have small breasts, she was saying; therefore you will never make him as happy as I have. Or you have small breasts; therefore you will doubtless have sexual problems. Or you have small breasts; therefore you are less woman than I am. She was, as it happens, only the first of what seems to me to be a never-ending string of women who have made competitive remarks to me about breast size. "I would love to wear a dress like that," my friend Emily says to me, "but my bust is too big." Like that. Why do women say these things to me? Do I attract these remarks the way other women attract married men or alcoholics or homosexuals? This summer, for example, I am at a party in East Hampton and I am introduced to a woman from Washington. She is a minor celebrity, very pretty and Southern and blond and outspoken, and I am flattered because she has read something I have written. We are talking animatedly, we have been talking no more than five minutes, when a man comes up to join us. "Look at the two of us," the woman says to the man, indicating me and her. "The two of us together couldn't fill an A cup." Why does she say that? It isn't even true, dammit, so why? Is she even more addled than I am on this subject? Does she honestly believe there is something wrong with her size breasts, which, it seems to me, now that I look hard at them, are just right? Do I unconsciously bring out competitiveness in women? In that form? What did I do to deserve it?

As for men.

There were men who minded and let me know that they minded. There were men who did not mind. In any case, I always minded.

And even now, now that I have been countlessly reassured that my figure is a good one, now that I am grown-up enough to understand that most of my feelings have very little to do with the reality of my shape, I am nonetheless obsessed by breasts. I cannot help it. I grew up in the terrible fifties — with rigid stereotypical sex roles, the insistence that men be men and dress like men and women be women and dress like women, the intolerance of androgyny — and I cannot shake it, cannot shake my feelings of inadequacy. Well, that time is gone, right? All those exaggerated examples of breast worship are gone, right? Those women were freaks, right? I know all that. And yet here I am, stuck with the psychological remains of it all, stuck with my own peculiar version of breast worship. You probably think I am crazy to go on like this: here I have set out to write a confession that is meant to hit you with the shock of recognition, and instead you are sitting there thinking I am thoroughly warped. Well, what can I tell you? If I had had them, I would have been a completely different person. I honestly believe that.

After I went into therapy, a process that made it possible for me to tell total strangers at cocktail parties that breasts were the hang-up of my life, I was often told that I was insane to have been bothered by my condition. I was also frequently told, by close friends, that I was extremely boring on the subject. And my girl friends, the ones with nice big breasts, would go on endlessly about how their lives had been far more miserable than mine. Their bra straps were snapped in class. They couldn't sleep on their stomachs. They were stared at whenever the word "mountain" cropped up in geography. And Evangeline, good God what they went through every time someone had to stand up and recite the Prologue to Longfellow's Evangeline: "... stand like druids of eld... / With beards that rest on their bosoms." It was much worse for them, they tell me. They had a terrible time of it, they assure me. I don't know how lucky I was, they say.

I have thought about their remarks, tried to put myself in their place, considered their point of view. I think they are full of shit.


Read more: http://www.esquire.com/features/nora-ephron-a-few-words-about-breasts-0572#ixzz1z2hQLVqj

Wednesday, June 27, 2012

LET'S BE ACCURATE PLEASE: STORIFIED STYLE

Tuesday, June 26, 2012

SPREADING THE WORD ABOUT CHEMOBRAIN

I met Jean Campbell at Per Se Restaurant at a writer's luncheon a couple of months ago.  I was SUPPOSED to see her again last Friday at the Cancer and Careers National Conference in NYC.  Instead, I was derailed.  Technically, I was more deflated than derailed as I was stuck home waiting for a vehicle repair compliments of another issue with these "low profile tires."

I hit a pothole similar in size to, ummmm, perhaps the Grand Canyon.  I wasn't driving fast and I didn't see the damn thing. I'm pretty careful about those things and after an episode in the fall, I am overly cautious about road conditions.  I had BOTH front tires blow out one fateful night last September.  It was approaching midnight.  I was on a pretty dark and desolate stretch of road.  I thought I had special "run flat" tires on the car.  And, even if I didn't, I had no intention of stopping.

Besides, it wasn't a fateful night because of the stupid tires anyway.  It had more to do with a game of deception in which I was an unwitting (and unwilling) participant.  All I'll say on that topic is, nothing is a secret and the truth always surfaces. It's never a question of IF, it's always a question of WHEN and for NOW, I cut it with the cryptic crap.

Friday's calamity stretched throughout the weekend and into today.  I have a loaner vehicle.  Two wheels and one tire-shot. Perhaps the repairs will be done today.  Maybe, it will be tomorrow.  No matter, it ruined my plans to be at the Cancer and Careers seminar and I didn't get to see Jean, either.

Cancer and Careers has outstanding information on their website they now have presentations of some of the workshops I missed thanks to the road, the tire, the wheels, my driving and/or a combination of all of these events.  Jean Campbell also has an outstanding website.  She is a two time survivor of breast cancer and served as the director of the American Cancer Society's NYC Patient Navigator Program.  Her website is called (cleverly), No Boobs About It.

No Boobs About It is packed with resources and information to help navigate through treatment and beyond.  And now, there is a little blurb about Chemobrain, too.  It's more than a blurb.  Jean asked me if I would share my chemobrain story and since I love to hear myself talk or see myself type or whatever, I happily agreed!

It took several weeks for me to condense the story into something that didn't resemble War and Peace.  We all know that's the punchline for a really LONG novel but here's a fun factoid from the font.  That's actually number 17 on The Long List. Technically, the longest novel honors belongs to In Search of Lost Time.  Ironically, the theme of that book is "involuntary memory" and surely I'm not the only person who finds it a tad witty that I'm trying to make a point about my inability to embrace brevity and in doing so, learn about this novel thanks to my ADD/OCD messed up, short circuiting chemobrain. The brain whose working memory doesn't work at all citing a book whose theme is ANYTHING to do with memory???

I wanted to publicly thank Jean for inviting me to share my story with her readers and I wanted to be sure everyone who reads this blog is aware of the stellar information one can glean from No Boobs About It.  Plus, it's a good spot to read the not so condensed version of my stroll down (I have no) memory lane.  And, there's a snazzy photo I found on my phone. So, what do you think about the longer hair?  Cut it or leave it alone?  I vote: "leave it alone."  Really?!!??  Hair???  Maybe it's insensitive to talk hair on any blog where cancer talk is the main event.


Monday, June 25, 2012

RETREATS FOR METASTATIC PATIENTS

In keeping with my promise to devote one day a week to metastatic patients, I wanted to share information about a retreat that is being held in September.  I've been hunting all over the place for the flyer but I can't seem to find it.  What appears below is from the Facebook page of You Can Thrive.

The retreat is sponsored by Breast Cancer Options.  It is being held at Omega Institute in Rhinebeck, NY.  Breast Cancer Options is an organization located north of NYC that offers support and programs in their community.  Omega Institute is a holistic learning center that holds workshops and retreats facilitated by some of the most renowned speakers in the world. (Eckhart Tolle just held a three day retreat at the campus.) Rhinebeck is a charming town on the Hudson River about 90 minutes north of NYC.

Please pass this information on to anyone who might be interested.  Contact Breast Cancer Options for details.  They can be reached by phone at 845-339-4673 or via email hope@breastcanceroptions.org.

I know there is a retreat at Johns Hopkins in two weeks but that was limited to 12 participants.  I would imagine it is already filled but I can't say for sure.

If anyone is aware of other retreats, please feel free to include them in the comments (if you can't comment as some people seem to be having a problem posting a comment, feel free to email me at anncicc@gmail.com).

Some of the details for the Omega retreat are in the Facebook posting:

FREE retreat at Omega Institute for women with metastatic breast cancer (through Breast Cancer Options), from another supportive nonprofit:

3 DAY RETREAT FOR WOMEN WITH METASTATIC BREAST CANCER
Omega Institute in Rhinebeck NY
September 24-26. 

Participants are welcomed in an environment where they can find understanding and support. This is an opportunity to look at the issues surrounding their breast cancer, gather information, and move beyond an intellectual understanding of the disease. Exploring feelings and fears is an essential part of the healing process. They will enjoy guided discussions about issues specific to women with metastatic breast cancer, including dealing with difficult feelings, living with advanced breast cancer, decreasing stress. There will be discussion groups, an Authentic Writing workshop, low-impact yoga and much more.

There is no charge but those who can afford to are asked to make a donation

Please call: 845/339-4673 or email: hope@breastcanceroptions.org to reserve a space. First come, first served basis.

"Please help by donating: in these difficult economic times, Breast Cancer Options has to make some hard decisions about which programs we can afford to continue and we need your help. Help us keep our retreat, Camp Lightheart and our other programs going by making a One-Time or Recurring Donation. Please donate $5 or whatever you can afford. Every dollar will help!"

Friday, June 22, 2012

I'M LOU.... SHE'S BUD.

I'm reprinting something that was written by my friend, Idelle Davidson.  She blogs here and she wrote an excellent book about living with chemobrain which you can find on her website.  Recently, she had the privilege of attending a survivorship research conference in Arlington, VA.  Not only did she attend, she was asked to speak and boy did she ever speak!  We probably could have done a great version of Abbott and Costello's, "Who's On First? The Chemobrain Edition!"

While I'm the joke cracking half of that duo, whenever anything hits the news, if you listen very closely, you might hear, "Hey AAAABBBOTTTT!"  That would be me... sending out the cry for Idelle so we might collaborate on the news.  She's a good decipher-er.  You'll see.  If you follow twitter, you may have already seen this but some of you don't and others (like me sometimes) might miss something in the tweet stream because, oh, I don't know, we got distracted by a tweety bird....

Speaking about twitter and then I promise, I'll hand it over, there was a designated hashtag for anyone wishing to keep up with the information.  This is the beauty of twitter.  People who are in the seminars are sending messages so those of us who are not at the event can follow along in real time.  When I saw someone's tweet about "Chemobrain is real," I KNEW they had to be listening to Idelle.  They were.  Idelle confirmed it for me.  A number of tweeps were sending out information.  The lesson there?  IF you find yourself in an auditorium and see someone on their phone and it appears they are text messaging, don't jump to conclusions!  They may be sharing that event with a global audience.

Here's Idelle... with some brilliant observations, a few suggestions and one really great idea.  She really is my hero.  Her blog post is titled, "ASCO, Where Have You Been?"  There are a number of people now wondering the same thing after Idelle dug up some excellent material to supplement her talk.


Welcome to My Blog



Last Thursday I was in Arlington, VA at the National Cancer Institute’s 6th Biennial Cancer Survivorship Research Conference. I had been asked to speak about cancer and cognition. Specifically, the organizers wanted me to comment on the “disconnect” between the research/medical community and the patient experience.

That wasn’t hard to do. As I told the audience, I know our book has made a difference. Yet I continue to receive letters from patients and former patients telling me that although they now understand what’s happened to them cognitively as a result of treatment, they can’t seem to get their medical teams to take their concerns seriously. A common thread is, they bring up their memory issues with their doctors only to have their worries waved away, dismissed, as if it’s all a figment of the imagination.

To illustrate this disconnect, I showed a slide of a sample patient consent form that I downloaded from the American Society of Clinical Oncology (ASCO) website. ASCO offers this form as a service to their members. Oncologists can then use the form to have their patients acknowledge the risks of chemotherapy.

So what’s on this form that patients are asked to sign? Basically, it’s a list of all the potential side effects (you'll find the actual document here): 

  • Nausea/vomiting 
  • Hair loss 
  • Low red blood count 
  • Fatigue 
  • Risk of infection 
  • Risk of bleeding 
  • Constipation 
  • Diarrhea 
  • Mouth and throat sores 
  • Skin effects 
  • Muscle/bone effects 
  • Nerve effects 
  • Kidney/bladder effects 
  • Sexual effects 
  • Heart effects 
  • Lung effects 
  • Reproductive/fertility effects 
  • Other 
It doesn’t take more than a single glance to see what’s missing. And of course, that would be language such as “memory or other cognitive effects.” That warning has not been incorporated into the consent document even though cognitive issues can be far more debilitating than hair loss and nausea.

Now this is ASCO, a 30,000-member strong organization made up of oncologists and oncology professionals that sets the standards for patient care worldwide. It is their mission to advance the education of physicians and other professionals who care for cancer patients.

And even though ASCO is highly respected and tremendously valuable, at least on this point, it doesn’t seem like it’s doing a very good job. If the professional association that sets standards for oncologists doesn’t seem to be aware of cancer-related cognitive dysfunction, is it any wonder that clinicians in their hospital and community practices dismiss their patients’ concerns as frivolous?

Adding another bullet and line of text to this 2008 consent document would take two seconds. But it’s really not about that. It’s about awareness. It’s about leadership.

Thursday, June 21, 2012

ONE PHRASE, A WORLD OF DIFFERENCE


Instant gratification.  I want it.  I want it all.  AND, I want it now.  Actually, I wanted it yesterday.

Surely most people will look at those words and realize it's a preposterous notion.  Yes, in the internet world, 24/7, always on, constantly connected, I can satisfy a whim.  I want a tote for the summer.  I've done some brick and mortar, touch and feel shopping but I could, at this very moment, find a suitable tote, enter my credit card number, pay the additional shipping costs and have the tote in my hands by tomorrow.  Not instant.  But instant enough to illustrate the point.

Change is not going to happen overnight, or exactly the way we would like to see it without going through phases.  While I am motivated by idealism, I am rooted in reality.  I can engage my mouth as loudly and as passionately as most anyone. But no amount of kicking and screaming, bitchin' and moaning' or crying and complaining is going to fulfill that part of me that is shouting in my brain, "I want what I want, the way I want and I want it now."  If only....

Today, I saw change.  Small change.  A tweaking of words and WORDS Matter.  Part of what drove me to write the entry for the METAvivor blog was borne of what I heard when I was at the NBCC Summit.  I am a staunch supporter of NBCC.  If I weren't there wouldn't be a clock prominently displayed in the banner of this blog.  However, I was dismayed at what I was NOT hearing.  Everything was about prevention.  Prevent breast cancer in the first place followed by prevent it from spreading.

Nothing about prevent death.  Until yesterday.

Serendipitous??????  Seriously??  Again???  It may be a theme for this week.

Fran Visco, the president of the National Breast Cancer Coalition, wrote an Op-Ed piece which appeared in the Boston Globe.  "Let's End Breast Cancer By 2020" and I was truly elated to read her words.  There was a slight change which equates to a tremendous difference.  The piece, in its entirety, appears below.  It's well worth reading in its entirety.  The slight change which is a giant leap in the right direction for someone (that would be me) who has promised to keep a weekly dialogue about Metastatic Breast Cancer on this blog?

I'm keeping my eye on the big picture.  If we prevent the disease altogether and we prevent DEATH in those who already have the disease then we pretty much covered the starting point and the end point.  From those two points, we can work our way toward meeting in the middle, thus dealing with all the rest of "it" .....

Change doesn't happen overnight.  We take one step at the time.  I don't know what prompted this change in language, but I like it.  Was it vocal disillusionment?  I'd like to think so.  I'd like to think that enough noisy people have the ability to have their message heard, understood, accepted and then incorporated into the conversation.

Thank you, Fran Visco.  I applaud you for changing the wording just enough to make the priorities of the NBCC inclusive of ALL, regardless of where we may fall on the breast cancer landscape.  THESE words just elevated the mets patients from the land of the forgotten to the place where they belong.  A priority.  These Words Matter.  A-LOT.... 


"It is time to leverage the knowledge we’ve gained and allocate our resources to create a collaborative effort to achieve two overarching goals: preventing people from getting breast cancer in the first place and preventing those who get it from dying of it."


In its entirety, the words of Fran Visco.  Highlights are mine.


Man’s first steps on the moon, which we commemorate every July 20, were both an astonishing human achievement and an affirmation of our nation’s unique willingness to do great things. The seemingly impossible challenge President Kennedy issued in 1961 became breathtaking reality only 98 months later. It is time to reawaken this impulse and honor our heritage by committing to a goal no less ambitious or achievable — than the moon landing seemed half a century ago: ending breast cancer by 2020.


But this seeming success has masked a medical failure. The United States spends well more than $1 billion a year on breast cancer research, and we have little to show for it in terms of the outcomes that matter most. While mortality rates have been gradually declining, they are nowhere near commensurate with our investment in dollars and attention to the issue.


On one level, we have made great strides in attacking breast cancer. Pink ribbons abound. Countless thousands of women -and men — walk and run to raise money for a cure. Awareness is near universal. From this perspective, it’s easy to believe that breast cancer is in retreat.


The numbers tell an important story. Twenty years ago, 119 American women died every day from the disease; today, it’s 110. Nearly 300,000 women in this country will be diagnosed with the disease this year. About 40,000 women will die. That number is close to 500,000 globally. If this is victory, no one should want to contemplate defeat.


We have learned a great deal about the enemy during this long, drawn out war. Our understanding of the biology, pathology and genetics of breast cancer has increased dramatically. And, our capacity to gather, synthesize and analyze data is beyond anything even conceivable 40 years ago. The problem is that we are not applying our forces intelligently.


The shortfall is not in scientific knowledge, but in organizational and systemic dysfunction that discourages bold new ideas in favor of safe research and predictable results. We have created an infrastructure intent on keeping itself going, with no real focus on the true goal. As a result, we get slightly better treatments, slightly better surgeries and slightly better radiation regimes – benefits, to be sure, but no end to the disease itself.


It is time to leverage the knowledge we’ve gained and allocate our resources to create a collaborative effort to achieve two overarching goals: preventing people from getting breast cancer in the first place and preventing those who get it from dying of it.


The process has already begun and is yielding some promising results. The National Breast Cancer Coalition has created the Artemis Project® — named for Apollo’s sister — to implement strategic plans in these areas starting with a collaboration to develop preventive vaccines. Under NBCC leadership, some of the world’s leading breast cancer researchers, as well as a cadre of multi-disciplinary experts, are working in parallel to tackle the tasks necessary to prepare vaccines for clinical trials in five years.


As breast cancer survivors and NBCC advocates, we have given up hope and taken action. We have but one agenda: to end breast cancer. No one is minimizing the difficulty of the task ahead. But it is because the goal is so big and important that nothing less than a national commitment of our energies and skills is required.


Those who think this is impossible should look to the sky. Yesterday’s science fiction is today’s science. We can end breast cancer if we summon the will to do so. Decades of investment have given us the tools and refined the technology. We now know much and can learn the rest in time to meet our goal. Failure cannot be an option.


 

Wednesday, June 20, 2012

METAvivor BLOG

Serendipitous.

Yesterday, I shared my commitment with anyone who may be reading this blog.  One day a week, I made a promise to devote this space to make noise, educate, raise awareness, find ways to divert, at a MINIMUM, proportionate funding toward research for Metastatic Breast Cancer.

Coincidentally, I wrote a post for the Metavivor Blog.  The idea behind the thoughts grew from a conversation I had with CJ and Lori when we were in Washington DC.  There was lots of talk about finding ways to prevent breast cancer and there was lots of talk about finding ways to stop breast cancer from metastasizing.

There were moments of silence in memory of those who have died.  Those moments were particularly poignant.

There was a gaping hole.  Once again, a significant group within the breast cancer community was being ignored.

We are honoring the dead.

We are attempting to find ways to prevent breast cancer in the first place.

We are looking at ways to stop the disease from spreading.

What are we doing for those whose disease has progressed?

Between the moment of silence and preventing mets, we lost an entire group of women.  Sitting between two metastatic patients only served to make me quite AWARE that something was very wrong with the entire scenario.

I'd like to let the research community know that I don't need you wasting time trying to decide if Drug A will be better tolerated than Drug B.  If Drug B works, I'll deal with the side effects.  FIRST, find the drugs to help the mets patients then we can reconvene and revisit the discussion of "perfecting" the drugs that ALREADY work for the rest of us.

Is this concept really that far off the charts?  It seems so simple.  It seems so logical.

I hope you will read my post on the Metavivor Blog.  I am honored.

Yesterday, as I made a public commitment on my own blog, an essay I submitted to Metavivor was published on their blog. (You can click on over now.... I'm done here for today.... and the message over there means lots to me)

Like I said.

Serendipitous.

Tuesday, June 19, 2012

WHAT CAN YOU DO ?? OK...THEN DO IT !!

I've written about this before, in fact, a number of times but today marks an official commitment I am making.  Once a week, every week, I hope to write a post specifically about metastatic breast cancer.  I've publicly expressed my concern for the 40,000 women in this country who will die of MBC this year.  I've publicly expressed my outrage (in a controlled voice, it WAS on the radio and the last thing the station needed was some lunatic woman screaming into a microphone) at the way those with metastatic disease are ignored.  I think I said things like, "They taint the ribbon."  Or, "They destroy the illusion of success and the image of hope that ribbon is meant to portray."  OR... "They are the dirty little secret of that ribbon."

The fact is this.  THEY are women.  THEY are terminal.  THEY deserve far better than what they are getting from the breast cancer community at large.  THEY need our voices-pushing for more research dollars. Many of us in the blogging community are very vocal in our support for those who are staring down the barrel of the metastatic gun.  The flame of outrage that has been burning inside me was fueled further after the NBCC summit.  I shared a room with Lori.  She has MBC and thankfully is NED.  I met CJ who is the sole surviving founder of METAvivor.  I admittedly fell in love with both of them.

My 39 year old friend died in January.  And then Rachel.  Immediately followed by Susan.  There were other bloggers with whom I was not familiar who have also died.  I've only been blogging for eleven months.  My corner of the blog world is not altogether that large.  A few of the blogs on that blogroll are written by women with MBC.  While I would like to designate those blogs, it feels too much like I am marking them with a scarlet letter.

One of the bloggers has most recently made a choice to stop treatment.  She chose quality over quantity.  My heart broke when I read about the choice she made.  Selfish on my part.  I want her around for a good long time.  Sadly, that will not be the case.  Others who have been in dire straits in the past couple of months seem to have emerged from their personal crises, THIS time.  Scans are clean FOR THE MOMENT and hopefully, for a very long time to come.  Still others are switching up meds hoping for a good result.  All of them are waiting, like Elizabeth Edwards said, "for the research to catch up" before the disease takes over.

When I was at MSK the other night and Kathy Bates spoke about her friendship with Lynn Redgrave, I'm sure my gasp was audible.  Lynn Redgrave held Kathy up through her diagnosis and treatment.  Lynn died.  Unlike her vow in that commercial for the American Cancer Society, she DID die of breast cancer.  She wanted to die laughing with her grandchildren or eating chocolate but she REFUSED to die of breast cancer.  Unfortunately, those diagnosed with metastatic disease don't get to make that choice.  It made for a powerful commercial.  And then, it made for a commercial that still haunts me.... and one, by the way, I can't find anywhere on the internet.

Here, however, is a thread from the forums at BreastCancer.org.  It's in the section specifically for metastatic patients and it's a candid discussion that punctuates my point.  The conversation thread, from October 2007, is about how they feel neglected, invisible, ignored.  I wonder how many of them are still alive?

Metastatic Breast Cancer Network just had two prominent members die within a week of each other.  Donna blogged about this and about the need for us to step up:

"We can not propel this cause from a single blog post or a single speaking engagement......(we need) concerted effort and repeated activities from many motivated individuals to imprint even a single step..... toward awareness and funding for MBC.  Don't think about who should hear this message--just pass it along until it reaches someone who responds to our impassioned call."

I'm a motivated individual and I'm rising to the challenge.  And, I challenge each and every person who reads this blog join me.  Where there are "pink events" I will bring my MBC voice along with my Army of Women voice and my Breast Cancer Action voice, too.  I'm in it to end it.  Once and for all.  Deadline 2020.  It needs to be a reality for all of us.

We need cutting edge research like that being promoted by Dr. Susan Love and the Army of Women.  We need financial accountability and transparency demanded by Breast Cancer Action.  And, we need to make the Deadline set by NBCC a legislative priority.  

For All.  BUT.... First and foremost, for those who stand to lose the most.  How can you help?  What can you do to answer Donna's impassioned call?

If I may?  Start by simply following the advice of John Burroughs:

The smallest deed is better than the greatest intention.