“As part of a regular ongoing effort to provide quality patient care,” reads the letter from the Breast “Care” Center. “We encourage annual follow up care.” It then goes on to say that they would greatly appreciate receiving information concerning my health status since last treated there.

Really?

This is the Breast Care Center where I had  mammograms for ten years without ever receiving a bi-rad score, and where they could no detect a hazel nut sized, slow growing, tumor from one year to the next. I was the one who discovered my tumor when it  was T1C-almost Stage 2.

This is the Breast Care Center where the radiologist, as she measured my ominous lump on the computer screen during my biopsy, said: Oh, we saw that last year. But we did not know what it was.  How about finding out? Is that not what radiologists are supposed to do? Are they not supposed to investigate a lump seen on a mammogram? Is that not why women have them?

This is the Breast Care Center where I was sent me home after a biopsy with detailed instructions on how to apply an ice pack on my breast every fifteen minutes. They told me not to have vigorous activity for 24 hours. Told me, that if I had a large area of redness or fever, I were to call them  immediately. But there was not one word what I should do in the unfortunate event the biopsy was not what they had hoped. No instructions at all how I should proceed if my biopsy was positive for cancer.

This is a letter from the Breast Care Center where its own radiologists calls me at work and tells me: You have cancer. Any questions? And hangs up on me when I, too stunned to even understand what she just told me, answers: No, no questions.

Click.

This is a Breast Care Center where a major overhaul of both procedures and training of staff is needed – an overhaul of everything from how to communicate with a patient, how to read an x-ray, what to do when a radiologist sees something “she does not know what it means.” How about consulting with another doctor? How about calling the patient back for additional x-rays? How about a biopsy?

And as part of the general over haul, this Breast Care Center should consider some new magazine subscriptions.

Most women no longer crochet doilies or make many casseroles. At least no one I know.

I will write them back and let them know my status: I will never set foot there, ever, again. The letter came with a stamped return enevelope.

In case you somehow missed it: October is Breast Cancer Awareness Month.   Basically, it means you are supposed to spend money to help find a cure. But why do we need to buy fluffy pink socks and eat pink cup cakes to raise money for much needed research? After all, breast cancer is a hideous disease, neither fluffy nor pink. Nobody expects us to buy baseball caps or bake “brownies for bombs” to fund our national defense. We have no “National Security Awareness Month.”

Our national defense and cancer research  are both about saving lives and preventing deaths.  So why then is one activity fully funded with our tax money while the other one needs supplemental funding, money raised from from bake sales, 10K races and our purchases of “pink” products? The problem  I have with marketing and voluntary contributions for the cure is this: You never know how much money is really spent or where the money goes. Could it be that you raise more mony if you write a check straight to your favorite cancer research center and by pass the pink hoopla?

When it comes to various races “for the cure,” I am completely on board. It is a healthy activity, a bonding experience, and millions of dollars go straight to the coffers of those who are helping us in the fight against breast cancer.

When it comes to “buying pink for the cure” I am quite cynical.  Just a glance at the racks of shoddy pink merchandise gives me a queasy feeling of being marginalized, trivialized and commercialized. Many of the items look cheap and useless, more suited to be sold in souvenir shops at air ports, at  carnivals, or at state fairs than as items to raise funds to save the lives of women.

Worst of all, it is near impossible to figure out exactly how much of the profits will be contributed to the cause. Sometimes, a merchant will promise donations of “up to 50,000″ or “$100,000.” But what is that in percentage of profits? Is it 0.25 percent, one percent,or ten percent? More? Less?

Some products are out right insulting. Take, for example, Proctor & Gamble’s  pink cookware set designed for “Cooking Up Early Detection.”

If you buy $25 of any number of Proctor  & Gamble  products – could be anything from diapers to Tampax and Cheer detergent to Fixodent – you will get a FREE set of pink cook ware from the “Good Cook’s Hope Line.”

First, NO MENTION of a contribution to cancer research. Second, the strings attached in order to receive this free cook ware are pretty stringent, according to the coupon.

I can only assume that P&G’s  cost of manufacturing and shipping the free 10″  frying pan, the spatula and the measuring cups is off set by valuable data base information for marketing purposes.

On the back of the coupon, P&G assures me that my personal information will be “protected.” Protected from whom? Obviously not P & G, they already have my data. One also hopes that the free pink cook set has been thoroughly tested and that the items will not expose women to more carcinogens as they, full of hope, fluff up their omelets in their new pink Teflon pans.

Sadly, despite all the pink hoopla and all the billions of dollars raised over the years, we are not anywhere close to a “cure.”  Prevention is not even on the radar screen, it seems.

Since so little progress has been made. Let us demand accountability of how cancer funds are spent and on what type of research.

Finally,why is the orange month of October designated as ‘breast cancer awareness month?” Why not the more “feminine” and  “pink” month of May? If we need to stick with fund raisers and the color pink in order to fight breast cancer, let us make Mother’s Day our breast cancer awareness day. Everyone on earth had a mother at some point. What day could be more appropriate to celebrate women and as a call to arms?

Let’s march to take back our breasts from those who exploit them for profit!

Let us declare war on pink trivia !

Let us demand that a woman’s breasts be  deified in more than the sexual sense.

Let us be careful about to whom we issue our checks. If unsure, we can give directly to the major research centers. Five dollars to them is probably a better contribution to the cause than $25 spent on a pair of pink sweat pants that will make us look like Miss Piggy.

Let us properly fund the disease that kills up to fifty thousand of us, and disfigures many more, every year. Maybe we should declare Persephone,  the goddess of  both the underworld  and spring growth, the breast cancer goddess also. Somehow it seems befitting.

Does an apple a day keeps the doctor away, or? I understand all about the benefits of antioxidants interacting with  free radicals. Sort of. But I still want to know how fruits and vegetables are encouraged by health professionals and nutrition experts without any mention of pesticides and carcinogens. It needs to get as much attention as fat, sugar, salt, and calories. More perhaps.

Apples, for example, are the second-most contaminated  fruit on the “Dirty Dozen List” (most contaminated were peaches. ) More than 82% of apples tested had been contaminated with at least two pesticides. Some samples contained  nine different pesticides. All in all, 50 different pesticides were found in the apple sampled.

Read more: http://www.brighthub.com/environment/green-living/articles/44303.aspx#ixzz0SshYUVQT

Other fruits and vegetables with too much pesticide residue listed on top of the “Dirty Dozen List”  are spinach, lettuce, green beans,  winter squashes,  peaches, pears, grapes, and cherries. All items the food pyramid shows that I should consume 4-5 servings of each day.

Clearly, there are enormous health benefits that comes from eating fruit and vegetables. Some of the pesticide residue may be reduced by washing and peeling them. But we need to arm ourselves with more facts and less fiction about what it is good for us. We need to be  better informed in order to make healthy choices about what  type of fruit and vegetables we digest and how they need to be prepared.

Do I think apples caused my breast cancer? No, I don’t.

But I now believe it is as important to count  carcinogens as it is to count  calories. You never know when and where all those pesticides digested during a life time will come back to haunt you.

Before my diagnosis, I paid no attention to pink bows, the symbol for breast cancer awareness.  But now that I have been initiated into the pink bow sisterhood, I see pink constantly and everywhere. It is obviously a powerful marketing tool.

Water bottles,  T-shirts, hats,  and slippers are decorated with pink bows. There are pink bows on candy such as Tic Tacs and M & Ms.

Even Fleischman’s yeast packages and Morton’s salt display pink bows. The pink bows are usually accompanied by statements like: “Each purchase helps fight breast cancer” or “Purchasing this package will support efforts to find a cure for breast cancer.” Valerie, a consumer relation’s representative for Fleischman’s Yeast writes that me: “Our donation will range from a minimum of $100,000 to a maximum of $200,000 depending on the amount of registered products.” This is certainly a good contribution although she does not specify which organization that gets the donation or what the profits are on yeast envelopes sold because of the pink bow. Morton’s salt does not respond to my inquiry regarding their support of breast cancer.

I find heads of cauliflower at the grocery store – and not in the organic section, either – each wrapped in cellophane with small pink bow and a link to a web site where you can learn what the cauliflower does for the “cure.” (Presumably it contributes more than antioxidants.) Heads of broccoli come with a pink bow printed on the cellophane wraps and an assurance that Andy Boy, the grower in Salinas, CA, is in “Proud Support of The Breast Cancer Research Foundation.”

7 Eleven sells boxes of donuts with pink ribbon sprinkles and 15 cents per donut goes to Susan G. Komen for breast cancer research. How much goes to diabetes prevention programs?

Delta Airlines sold $2 cans of pink lemonade on their transcontinental flight from Atlanta to San Francisco “in honor of breast cancer.” (How much did the near-bankrupt airline donate to the cause?)

The breast cancer awareness postal stamp was the nation’s first fund-raising stamp, according to the U.S. Postal Service. It cost more than the normal First-Class stamp so that net proceeds could go to the cause. Thirty percent of of the net proceeds went to the Medical Research program of the Department of Defense. Does WMD stand for Women Massively Deceived?

Well, the defense department did use the money for breast cancer research. But why the Department of Defense?   What could possibly be the link between the defense department and breast cancer? Is the defense department really the ideal department to decide who gets grants to research such an important health issue for women? Yes, there are women in our armed forces. But please, I don’t think funds from the breast cancer stamp had anything to do with women soldiers.

Once you are aware of the pink bow mania, you can not escape all the products and organizations involved in rooting for “the cure”and their promotion of  “awareness.”  You have to ask yourself, how much money is really contributed to breast cancer research, and who gets the money for doing what?

Join “Think Before You Pink” and support the fight for breast cancer prevention.  If shopping were the solution, we would already have a cure.  http://www.thinkbeforeyoupink.org/

No MRI results. No pathology report on the calcification in my left breast. No surgery date  – yet – to remove the cancerous hazelnut in my right breast. Five weeks have passed since I received my diagnosis. Five weeks since I was told I may have lived with breast cancer for a whole decade. And it is still there.

I am stressed. I am short with people.  I can tell – even without a mirror – how my whole face looks dour and unpleasant. My tone is whiny, my words cranky.

I sleep poorly at night. My insomnia is, in part , because I cannot stop myself from reading “cancer books” at bedtime. (I try to stay away from the internet at night. Once you enter that galaxy you might as well disappear into a real black hole in outer space.) After a life time of ignoring anything medical, I am obsessed. And confused.

I read about the predictors that constitute high risk for recurrence. Breast cancer cells like to escape your breast and sneak away via your lymph node system. They metastasize most commonly  to the bone, the liver, the brain, and the lungs. With both hands I press my neck and explore my  arm pits to check for signs of swollen lymph nodes, just like my doctors now do first thing I meet them.

Suddenly, the bone in my foot feels tender and painful. At first, I try to tell myself it is from my new shoes.  But then I manage to talk myself into that my breast cancer has metastasized to my bones. Normally, it does not start in the extremities, I have learned. It starts in the ribs, the femur, the shoulders, not your toes or ankles. I feel a bit better. Then a stitch in my side becomes metastatic breast cancer to my liver. A mild pain behind my ear becomes a brain tumor. A cough and I am sure it has spread to the lungs.

I lie in my bed at night and imagine the cancer cells floating around inside my body, nibbling at my organs, like guppies darting around in an aquarium, nibbling at their food.

My pendulum swings between knowing that I am completely ridiculous  and knowing that I, despite all odds, could be stage IV. This is the stage about which Dr. Susan Love  in her Breast book says: Take care of your affairs and make plans for how to live  in the time you have left.

But I don’t make any plans or take care of my affairs. I just continue to read scary statistics and get high on the anxiety fumes.

Dr. Bored, my gynecologist for more than a decade, was a drug pusher and his drug of choice was Premarin.

-Take this and you will feel great.

-But I feel great. A little insomnia perhaps, but don’t you need less sleep as you age?

-Premarin will take care of it.

-A little creaky sometimes.

-Premarin will take care of your joints.

-What about my memory, like to have that back.

-No, but it will help with everything else. My wife will be on hormone therapy till she is 80.

My doctor did not share the information here below. Luckily with the internet it is now available for anyone to read on Premarin’s own website, www.premarin.com a little warning bell ringing in their “wellness plan”:

“Using estrogens, with or without progestins, may increase your chance of getting heart attacks, strokes, breast cancer, and blood clots. Using estrogens, with or without progestins, may increase your chance of getting dementia, based on a study  of women age 65 years or older. You and your health care provider should talk regularly about whether you still need treatment with estrogens.”

I am not a believer in buying and swallowing pills that are supposed to help you with something you don’t need. So I ignored Dr. Bored’s emphatic recommendations. I tossed his prescriptions and samples, and still got cancer. But what if you are unsure about taking a medication? What if you need real advice about hormone replacement therapy. What if you, too, have a doctor who has been drinking the pharmaceutical company’s Kool Aid? Then what is there to “discuss” with your “health care provider” ?

You don’t understand your doctor’s mumbo-jumbo, or have doubts?  You are confused about the correctness of your diagnosis or your pathology report? You are too scared to wait six months to find out what may lurk inside your boob?  You have a family member, or a friend, with breast cancer and you want to figure out what it all means?  Go to:

http://www.hopkinsbreastcenter.org/services/ask_expert/

You can send them an email with your questions and wait for an answer. But chances are that  by reading other people’s questions you may have the answer to your own.

This site is so important that I urge everyone to save it in “favorites.”

When the big C strikes, everything is suddenly confusing and incomprehensible. You will never even remember this link to Johns Hopkins’, if you don’t save it NOW.

I hope you never have an occasion to use it. Unfortunately, though, chances are high you will. One in eight will get breast cancer. Some say the in-official number is now one in six.

The World Health Organization, WHO, estimates that every year,  1.2 millions new cases of breast cancer occur globally. About 200,000 are in the United States, which would indicate that American women have the highest rate of breast cancer in the entire world.

The Johns Hopkins’ life line is free. How amazing is that?

Thank you Lillie Shockney for devoting yourself to helping others. Thank you, Johns Hopkins, for keeping this valuable resource going!

Thanks to you I fought – and won- a re-excision. Had it not been for you, and one radiation oncologist with eagle eyes, I would probably have thought that less than a two mm margin was OK. (It is NOT.)

Ask the Expert is no substitute for medical advice from a physician who has examined you and your records. But you can learn from the questions and the answers if your instincts are worth pursuing. Let WDDD be your mantra: When in doubt don’t delay.

The breast cancer debate circles a great deal around “unnecessary” mammograms and biopsies. You may be “frightened” for “no reason.” Puh-leeeeze!

What is scarier? A biopsy where you find out everything is fine? Or the biopsy you didn’t have that brings you straight to Stage III or IV down the road…What is more alarming: a false positive or a false negative?

I, for one, will take the false positive and do jubilant cart wheels all the way home to uncork the champagne on the news “it” turned out to be “nothing.”

My medical records have evaporated. Buried in some nuclear waste site? My “health file” at home contains a brochure regarding an ancient, and expired, insurance plan. Not a single piece of paper refers to past doctor’s visits or mammograms. Not a single reference to the benign findings of my earlier biopsy. Certainly no pathology report.

How could this be?

I never received any health reports, other than bills and the pap smear post card. Never once did I get a mammogram report or a letter indicating “birad score.” And I did not miss them.  My good health was a foregone conclusion at each check up.  Every year I went just to confirm my infallibility.

My family’s medical history is one of longevity, a smattering of depressions,  and a few scattered gallstones. Some TBC can be found in the older parts of the family tree. No cancer. Or ?

Do we really know what lurks in our DNA? Much of what we “know” about relatives is myth, many “unknowables” passed on as “facts”.  Did Uncle Edgar really die from gallstones or was it cirrhosis? Was great Grandpa August done in by a stroke or a brain tumor? Did Aunt Celia have syphilis or was she schizophrene when they carted her off?  In all probability,  their doctors may not even have know for sure.

Until the first cancer cell popped up, my health was impeccable. I have low blood pressure. Normal hemoglobin count. Excellent cholesterol levels, at least of the good kind. I never have head aches, until now when I realize how stupid I have been about my records. Obviously my “health IQ” must be extremely low.

The Breast “Care” Center has no record of any previous biopsy. Even though I clearly remember lying face down on a contraption with one of my breasts pouring through  a hole while someone pricked my breast with needles. Which breast?  What Year? No idea.  But  I do remember my appointment with a friend’s physician, Dr. D. whom I met to get the biopsy result.

-I have cancer, don’t I?

-What makes you think that?

-I described my x-rays to my friend over the phone . She told me that my description sounds just how her x-rays looked when she was diagnosed with cancer.

With a hairy slab of a hand and a chuckle, he waved me away.

Now Dr. D no longer has a practice and my records are gone.  The breast “care” center  tells me my mammogram in 2000, six years earlier, revealed calcifications .  Nothing was ever done. No records available before that year. I never received a report. Certainly no “birad score” (what are those anyway?)

“We discard all x-rays after seven years,” a lady tells me.

Amazing, considering their own radiologist told me cancer can linger for 10-12 years before it is discovered. Is the purpose of annual mammograms not to track changes inside your breast? Since mammograms are so hard to read.

I  call Dr. Bored’s office.  He retired, in fact, he just passed away. His office no longer has my records either.

I start hyperventilating, but eventually manage to calm down.  Being furious with impersonal institutions, and retired, or dead physicians is  pointless. Nobody I can  give a  dope slap. Nobody but myself.

Luckily, I have book club in the evening.  There in the company of my friends, I forget about my non-existent biopsy reports and doctor’s who don’t biopsy obvious micro-calcifications.

Dr. D. is retired. Playing golf? (A punishment in itself. ) Dr. Bored is dead, and here I am, very much alive: eating, drinking,  and laughing with my book club cronies. Who is the lucky one?

I am reading in the garden, pool side, when I notice the gathering clouds and hear the rumble in the distance, so I dart inside the house to lie down on the living room sofa. My husband is already napping upstairs.

Claps of thunder before rain begins to drum against the tall windows as I drift off to sleep, a rare occurrence. I seldom take naps. When I slowly come to, the clouds have dispersed and the sun has moved from my field of view. It is pre-dusk on a clear summer evening. Suspended between sleep and  consciousness, I hear the children in the neighborhood across  the pond laugh and shriek. Then their shrieks get shriller,  the kind of shrieks that come not from joy but from fear or conflict. Quickly, their squeals  turn back to merriment and laughter.

I try to orient myself in space and time, drifting between the here and now, and previous places and decades. I am back in my own childhood, resting in bed, perhaps with a mild fever. The neighborhood children play kick the can, race across the lawns, hide behind the sloan hedges and among lilac bushes. These sounds from five decades ago  mingle in my mind, not only with the present shrieks, but with shrieks and laughter from my own children, two decades earlier, in a state 1500 miles from here. The same joyful shrieks, the same quick swings between  fear and  laughter.  As I rest on my sofa, the scent of those lilacs from far away and long ago is so intense that  I half expect my mother to enter the room with a glass of lemonade or a comic book, or my three children to come crashing through the back door.

I get up from the sofa to retire up stairs. I continue re-reading Joan Didion’s The Year of Magical Thinking. (I read it already in January, months before I knew, now I have the strong urge to re-visit her experience.)

“Life changes fast” she writes. Life changes in an instant. You sit down to dinner and life as you know it ends. The question of self-pity.”

Only, I don’t feel self-pity, I just feel amazed. I am amazed that this happens to a person, who on the maternal side, descends from a long line of women with dour expressions and whose gloomy longevity allowed them to reach  87, 92, 97, 99 years of age.  Could it be my newly discovered paternal grandmother , Carolina Jansdotter, dead at 39 , who is the culprit, the poison in my gene pool?

Or did the environment throw a wrench into my DNA machinery? After all, what does it matter if your food is cooked from scratch if there are hormones and antibiotics in the meats, mercury and PCB in the fish, pesticides on the vegetables, estrogen in your water, genetic manipulation of grain and fruits, chemicals in your cosmetics and lotions, detergent and soaps. Formaldehyde fumes  in your floors, ceilings and walls.

According to cancer.org you get cancer one of three ways:  inherited,  environmental damage to DNA,  or a combination of both. So, no self-pity -  yet. Just amazement and anxiety, and a great deal of curiosity: how did I get it? Want went wrong inside my breast? The more I learned about the cancer, the more I realize that this disease is highly unpredictable. A Stage I can accelerate without warning and against all odds.   A Stage III can be beaten back , also against all odds. Cancer is still deadly, not much progress has been made towards finding a cure. And it is clear that  a lot of unpleasantness and expense is involved in trying to beat it back.

A perfect day to hang out in our wonderful pool, the one extravagant purchase we do not regret. It is large and deep, filled with cool turquoise,  mildly salty, water, soothing to both body and soul. My friend Cecilia comes over and gives me “The Complete Guide to Breast Cancer.” (Winner of the Ross Kushner Award for American Medical Writing.) It feels surreal to look down at the 36 pt. blue typeface against a pale yellow background and realize that I have breast cancer and the book is for me and about me. Flipping through the pages, I discover the complexity of breast cancer: There are so many different kinds, different stages, different phases, different grades, everyone with a different outcome. The outcome depends on — what? I need to figure this out.

I glance at the statistics for my cohort. Five year survival looks good: First five years 96% still alive.

Ten years looks less promising. Best case seemed to be 75% alive after 10 years.  Worst case was 54%. That is, according to my math impaired mind, 50-50: a coin toss.

Twenty years looks a bit scary: 40% of all women diagnosed with breast cancer will die from the disease. Could that really be right? But I will be 80 years old. You have to let go sometime, especially if you dread assisted living. But from what little I have gleaned from my research so far: dying from cancer is not the ideal way to depart.

I cheer myself up: pioneer women had an average life expectancy of 38 years. Women in Sudan….Women in India…Women living in all under developed countries, their numbers are dismal even now in the 21^st century, a lot more dismal than my life expectancy with cancer.

I close the book and put The Complete Guide to Breast Cancer up-side down on the table beside me. I don’t want the title to stare me in the face while I am trying to relax.