“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.

“Yesterday was horrific, “ says  Dr. Guru’s assistant when I call to complain that he never called with the pathology results, as promised. “I had to snatch him to even get one second.” She lets out a deep sigh, the kind that seems to come from  the bone marrow, not from the lungs.

I feel guilty for nagging her about my pathology results. I have no problem understanding the plethora of emergencies Dr. Guru must face each and every day.

“And he is going on vacation, you know,” his assistant tells me.

I imagine the scene: Phones ringing. Faxes rattling. Lights flashing. Intercoms blaring: Dr. Guru, Dr. Guru. Line 2. Dr. Guru, Dr. Guru, OR 5. Patients, like me, but a lot sicker, clamoring for his attention. Patients with melanoma cell spreading like wild fires, begging him to intervene.

And here am I, on the opposite end of the spectrum: BC stage 1 . I am  the patient who is never an emergency. Of course, he didn’t call. With only 24 hours in each day, Dr. Guru is forced to set priorities.

And now he is going on a much needed vacation.  How long will  he be gone? Two weeks? Three?   I picture some luxury junket paid for by the scalpel manufacturer.  No, not at all. It turns out he will be gone one week, working in a summer camp for kids with disabilities.

I am ashamed, feel selfish and petty, but I must find out what was in the tumor and what will happen next.

“When will I start treatments? When he comes back?”

“You need the oncogene test first,” Joy tells me.

My blood drains: he wants my oncogene tested?  Is it not the oncogene result I was supposed to get yesterday, the day before, really? Is that not the test result I have been chasing?

Did Dr. Guru not tell me: I am just waiting for the oncogene report? But how could he be waiting for that report if I did not even have the test?

Good grief, why don’t I understand anything?

In the waiting area, before receiving my mysterious “wire,”  I immediately set eyes on a young woman, at the most 25 years old, too young to be wearing a hideous hospital gown and a plastic ID bracelet at the Magnolia Cancer Center. The middle-aged woman next to her is fully dressed. I feel emotional as a look at them.

The mother, I assume, notices. She, too, have tears well up in her eyes before we both look away, neither of us, obviously, want the girl to see our reaction.

I hope she will escape chemo. But because of her young age, the odds are not in her favor. And what about five years on the estrogen interfering pill Tamoxifen, while her biological clock is ticking? And what about her very survival? The young woman just sits there, quiet and calm,  seemingly unaware of the high stakes.

Three other women, all older, are also in the waiting area.  The women talked freely but quietly among each other.

One is a nurse in the child oncology department of the Magnolia Cancer Center. She quietly says: “Breast cancer may be one in four now. But it is not official yet.”. She is here for her first annual check up after lumpectomy, radiation and chemotherapy. All her hair is back on her head: Thick and dark, streaked with gray, curly. “It used to be straight and thin,” she says,visibly shaken by what she has been through during the past year.

Another woman in the waiting room is a slim, light skinned black woman with a pleasant smile and a dignified demeanor. She sits with her back straight, one leg gracefully crossed over the other, hands in her lap.  She looks serene, only the nervously tapping foot betrays her tension.

Her great-grandmother, her grandmother, her mother and sister all died from breast cancer, she tells us. Ten years ago she herself had a lumpectomy and radiation. Then it was ductal carcinoma in situ. Now, in a routine check up, she is discovered to have lobular carcinoma. She needs a full mastectomy. Her voice is calm, she looks brave, but then again: there is the jiggling leg. I don’t know if she is aware of these scandalous statistics. The numbers below are truly something to scream about at town hall meetings instead of ranting about imaginary “death panels.” How about a certain death trap (unless you have deep pockets): breast cancer without health insurance.

According to the American Cancer Society the gap in death rates from breast cancer between African American and white women has increased substantially. In 1991, death rates among African American women were 18 percent higher compared to white women; by 2004, they were 36 percent higher.

It is amazing how four women in a waiting room can bond so quickly. It reminds me of female bonding during pregnancy. Although back then I sensed more of a competitiveness among expectant mothers in the obstetrician’s waiting room. Who had kept her weight down better? Who was thinking she would handle labor pains better? Whose baby would be the best baby ever? (Mine, of course.) Now we, the breast cancer patients, seem genuinely interest in each others’ stories, seem to care about everyone’s fate. We do not compare.

I am called away before I hear the result of the  oncology nurse’s check up.  But a few minutes later, in the adjacent room, I hear laughter and applause from the waiting area. After one year, the nurse is still cancer free. The room cheers for her as she walks away. (The two first years after surgery are the most likely for recurrence.)

I have no idea what happened to the young woman who waited for surgery with her mother. I still think of her.

The day I have worried about, fought for, and pushed for, is finally here. Last time I had surgery, 26 years ago,  two healthy full-term babies, a boy and a girl, were removed from my body. This time the surgeon will remove a specimen of malignant neoplastic tissue, surrounded, I suppose, by normal grizzle and fat. (My niece, a medical student, says the inside of a woman’s breast looks like it is filled with spaghetti-Os.)

My cancer cells have been hiding inside me for years, secretly dividing themselves, feeding and growing through angiogenesis until they reached a palpable lump, the size and shape of a hazelnut. Nobody can tell me how this excessive cell division got started. Too much consumption of hormone treated meat and dairy? DDT? Chest X-Rays? Just a DNA roulette?

Nothing to eat or drink after midnight, I am told.  No latte. No orange juice. Not even water. Also, no make up is allowed. They want to see the normal pallor of your skin and be able to tell if your lips turn blue. Normal morning routine takes an hour, including ten minutes for the New York Times. Now  I am showered, dressed, and ready to go in less than 20 minutes.

Summer traffic is sparse and traffic lights line up green, practically all the way. Accompanied by my husband, I arrive way ahead of schedule. We valet park and before I know it, I am back in the outpatient surgery waiting room where I waited an hour only two days earlier. Now, at 7 A.M., the place is filled with couples, one patient and one a “responsible party”  and designated driver. This time I don’t wait.

I am ushered into the inner sanctum almost immediately and shown to a gurney behind some drapes in one of the pre-op units. Over a loud speaker I hear a female voice: Dr. Guru, Dr. Guru, OR 4. OR 4. Holy smoke, my doctor is doing another surgical procedure before mine. How many after me? How does he manage it? How many coffee breaks does he get? None?

It feels strange to arrive  feeling perfectly healthy and normal.   I am weighed in like a prize cow, stripped of my clothes and donned the hideous gown that is supposed to be “one size fits all” but appears to fit no one. My vitals are checked and approved. Within minutes, I have a plastic ID band around my wrist, an IV in my arm, and a  warm blanket around my legs.

I feel like the perfect nursing home specimen as I take a couple of shuffling steps. I  try to  keep my gown closed in the back and the blanket from falling off.  The IV pole rattles and the tube tangles. My whole sorry appearance highlighted by unforgiving sharp ceiling lights. I sink back on my gurney.

On the other side of the curtain, a wife (I assume) and a nurse, both try to talk sense into some confused male. It is hard to tell if he was waking up from anesthesia, or if he is this confused already before his procedure. They shout at him, explain to him, cajole him. But he remains recalcitrant. “No why? No, I don’t want to,” he keeps saying. It is unclear what he doesn’t want to do.

Suddenly my husband is allowed into pre-op and shortly after that comes Dan, my friend Elise’s husband, the anesthesiologist, on his day off! He is dressed in scrubs although his colleague is the one who will put me under. He showed up just for me although he does not really know me. I am Elise’s friend. Why am I not surprised that my dear Elise has such a wonderful husband?

But I cannot socialize for long.  A nurse leads me away. I shuffle behind her, my IV pole swaying, to another waiting room. I am about to recieve the mysterious wires. Before I can ask the nurse exactly what “the wire” means, she is gone. I am alone in a tiny waiting room with three other women, and a young girl.

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/

Thursday, I only have one thing on my mind, one thought circling my brain like a  hungry wolf.  I want to go under Dr. Guru’s scalpel, I need for him to get rid of my nasty, ugly tumor. Now.

Not a word from Dr. Guru’s office.  Not a word about the MRI results.  Not a word about a surgery date. Yet another week-end of uncertainty looms before me.

I can only assume now that my surgery will not be on Tuesday. Annoyed at being in limbo, I call Dr. Guru’s office. His assistant, Joy, has left although it is only 4.15 P.M.  Of course, I left my own office at 1.15 P.M., three hours earlier than Joy left hers. But I am not an oncologist or surgeon. My job is only about money, not about  life or death, not about anxiety and worry.  And my territory is Europe where 1 P.M. Eastern standard time means 6-7 P.M. : Happy hour in London and Paris.

Yet there is an upside to breast cancer: people care more than I could have imagined. Six friends call me in the evening to ask about my MRI result and about a surgery date. They, too, get huffy and annoyed when they hear that I don’t know.

One friend, who calls me from Sweden  to check up on me, says:”We love you!”  before she hangs up. We have been friends for more than 40 years. She has shown me in a million different ways how much she and her whole family cares, but for the first time she says:  We love you.

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” ?

I. Nobody in my family has breast cancer.

But: Eighty percent of  post-menopausal breast cancer patients do not have a family history.

II. I need to wait until my son’s wedding, my husbands 50^th birthday, our 20^th anniversary trip/my daughter’s high school graduation/until after my high school reunion.

But: What could have a higher importance than your health?

III. I need to loose twenty pounds. Hate to weigh myself at the doctor’s office.

But:  Mammogram centers don’t weigh you. Be sure you have a digital mammogram. Follow up with your doctor to get the result.  A recent study shows that seven percent of all significant findings don’t get communicated to the patient. No news may not always mean good news. Also, since most cancer does not show on a regular screening mammogram, insist on a diagnostic mammogram if you still have concerns.

IV. Work is crazy busy right now.

But: Won’t get much work done if you end up in hospice.

V. Lumps are usually cysts so no hurry to go now.

But: You cannot tell from the outside. Still check out:

http://www.mayoclinic.com/health/breast-lump/WO00031

VI. I don’t believe in breast cancer because I have a healthy life style.

But: You will be surprised how many skinny women with healthy life styles end up with breast cancer.

VII. I just had a cancerous mole removed and was diagnosed with Squamous Cell Carcinoma. I cannot have two cancers at once.

But: some types of cancers puts you at higher risk for a second cancer.

Check your breasts. The life you save may be your own.

The post man sprinkles me with bills. How many have I managed to accumulate, considering I have not yet had my MRI or surgery? Did their computerized billing system over heat? Reluctantly, I open the first white envelope.

“This is not a bill” it reads. Then what is it?

It is a letter from the insurance company informing me that a claim has been filed. The three next envelopes have the same date, June 19^th, but all are for different amounts. What is going on? Ah, one is from the doctor for his time, one is for the laboratory for analyzing my cells, and the third  is for the  use their equipment.

In small print, all the bills confirm claims have been filed with my insurance company. Then in large bold letters, all three bills say: It is your responsibility to pay.

I realize: this is just the beginning of bill-o-mania.

Without as much as a glance at the content, I empty an old ring binder. Voila, a fresh storage facility for my medical bills. I take a yellow marker and high light the date, the “service provider,” the description and the code of what was done, as well as the amount.

This is going to take organizational skills I don’t possess. After all, some days I feel I already have the famous “chemo brain.” Should I need chemo therapy, my mental stamina will hardly improve.

I place my “new” medical ring binder in the book shelf and notice one more white envelope on my desk. It is from the Cobra Services Administration:

We are changing from Blue Cross Blue Shield to Guardian. If you do not respond to us with a check in the amount of $849.23 within ten days from the above date, we assume you do not want continued coverage.

Are they @*&%# kidding me? Why would they assume I don’t want health coverage just as I face my biggest expenses since paying for a university education and buying a house?

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?