A new vaccine against breast cancer has shown promising results during trials, according to the Karolinska Institute in Stockholm, Sweden. The results of the study was published in the journal Oncogene in May.

For breast cancer cells to proliferate they need to stimulate blood flow by forming of new veins to carry that blood.  But if you block the protein Delta-like ligand 4 (DLL4) you can create new – but useless – veins.  This slows down the tumor’s growth and may prevent breast cancer recurrence following surgery, according to Dr. Kristian Pietras who lead the study, since the tumor, despite new veins, does not receive the nourishment from an increased blood supply.

The animal experiments also showed that the vaccine had no serious side effects and that wounds still healed well.

This is the week Dr. Guru promised to do my re-excision.  But not a word from his office or from his assistant, Joy,  who  supposedly is “arranging the details.” No explanation. No apology. No  follow up.

Meanwhile I am obsessed with my research, trying to figure out the dangers of putting off radiation. Everything I have read says it should ideally be within four weeks of the lumpectomy,  no more than eight weeks.

I find a Breast Society Journal that confirms what I suspect:  2^nd incision not good for the breast, tunnel syndrome etc. Dr. Guru himself has written something in this journal.

And how will Dr. Guru know where to carve again, now that my breast, presumably, has heeled?

“Will remove lateral margin with aid of frozen section. My assistant arranging details. Thanks,” reads Dr. Guru’s email in response to mine. But he gives no hint of exact date for my re-excision although “next week”  is right now.

I call Dr. Alpha, my radiation oncologist,and ask him  if a two week wait is OK.  ” Not ideal, but OK,” he says.

Pissed, I call Dr. Guru’s office.

“I am supposed to have surgery this week, but I have no idea which day he means,” I tell his assistant.

She has no idea either.

“These small procedures are so hard to fit into his schedule,” she laments.

“I am already aware of how terribly insignificant my procedure is , but I cannot go on with my radiation and hormone  treatments without the re-excision.”

”Oh no,  that is not what I mean.”

“Can another surgeon do it?” I ask realizing I sound ridiculous.

“Oh no, then you are a new patient and have to start all over again. How about  the 15^th?”

“That is TWO weeks away. Two months since my first surgery.”

Briefly, I am put on hold. She comes back to tell me they have no openings this week. None.

“Maybe the 7th. I will call you back if we have a cancellation. Promise.”

“He usually does these small procedures on Fridays,” she says. “But this Friday he has a 10-hour procedure scheduled.”

I don’t give a rat’s tail anymore.

“How about my little one before the big one on Friday?”

We keep wrestling over the phone, both of us digging in our heels, but neither of us loosing our cool.

“I am going over to the hospital this afternoon,” she finally concedes. “I will ask him to call you if he can do something about it. Some times he sees thing I don’t.”

“Have him call me either way,” I tell her. “I want it straight from Dr. Guru’s mouth to my ear why he told me he was going to do it this week and suddenly he can’t. I want to hear him say it.”

Around 3 PM,  Dr. Guru’s assistant calls. She sounds relieved. “You have pre-op  on Thursday at 10.45 AM. Your  re-excision is on Friday, 1 PM.

I immediately feel guilty. What melanoma patient has been pushed off the table to make room for me? What woman with advanced breast cancer, a double mastectomy with reconstruction may have been pushed off the OR table? What person needing a 10-hour surgery is now in a complete funk because of me?

“Bullshit,” says my friend Cecilia.  “He just canceled his golf game, that was his 10-hour procedure. Don’t kid yourself.”

But I am not convinced, just relieved to know it will finally be done.

Although no cancer cells may have been found in a patient’s lymph nodes during surgery, 20 percent of these “node negative” patients still have cancer cells somewhere outside the breast area. Not surprising perhaps, since once a tumor reaches  1 cm, you have one billion cancer cells, like this one below, in your body.

In the past, oncologists have tended to administer chemo therapy to all patients, not knowing which ones were among those 80 percent not at great risk.  They  know that once your breast cancer spreads to other organs, you become Humpty Dumpty. They cannot put you back together again.  At best, they can  keep you stable.

But now one company, the only one in the world, California based Genomic Health has a way to test cancer tumors to predict distant recurrence. Based on the examination of 21 different genes in a tumor, they come up with a “recurrence score.’  The scale goes from 1, lowest, to 100 ( highest probability that your cancer will spread in the next ten years.)

While I anxiously wait for my OncoDX test results, I pour over probabilities and statistics for my cohort. Given the size of my tumor, 1.5 cm, the mitotic activity report, the nuclear grade, etc, I am guessing my score will not be the lowest. Nineteen maybe?  Twenty? OncoDX score 30 or higher: you should have chemo. OncoDx scores under 18, no chemo.  If I have a score of 19 or 20 ,  would it be “safe” enough to skip it? I  keep telling myself it would be.

My score was 23.  Right smack in the  middle of  the intermediate danger zone. Borderline for chemo.

“Right in the middle of the gray area, “ Dr. Guru tells me on the phone. “Do you want me to fax it?” Well, yes,  but my office is big and faxes have a tendency to go astray. He promises that Joy will fax it right away. I worry as I stroll over to the fax room.

Am I  an idiot for trusting that he will do it “right away?” Maybe his “right away” is the same day, not within five minutes. I do not want anyone else to see my OncoDX  fax.  But as soon as I enter the room, the OncoDx test result rolls out of the fax machine. I make a regular copy and leave, clutching it to my chest. Back at my desk I study the $3800.00 piece of paper more carefully than I would a sales contract for a $500,000.00  IBM server.

I note that Dr. Guru’s office   received the score already two days earlier. Do they not have any idea of the anxiety level of a patient who is trying to figure out if she needs chemo?

My recurrence score of 23 means that in the next 10 years I have a 14 % risk of  metastatic cancer, of becoming Stage IV. I read the words “distant recurrence” over and over. I taste lead in my mouth. The taste of fear.

Does this mean chemo? I feel lightheaded. When will it start? How long will it take? Which toxins will they use?

At home, I pour over chemo books and surf the web to try to figure it out. It looks like my stage will require four rounds. I start to feel resigned to the reality of nausea, aches and vomit; to loosing my hair, my mind, my ability to have an orgasm –yes, that is a possible side effect, possibly even permanent– and to gaining  30 pounds without the pleasure of eating more.

But then I read in Dr. Susan Love’s book:  chemo reduces recurrence to one third, i.e only five percent in my case.  And, most importantly, she states “chemo less effective in post-menopausal women.”

If it is less effective, it must mean there is not much help, not even chemo, for post-menopausal women whose cells have spread. Should I been happy or have a heart attack?.

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.

A cancer research team in Lund, Sweden has found a new a gene profile that can help oncologist better determine when lumpectomy followed by radiation may not be appropriate.

The newly discovered gene reveals whether or not a tumor will respond to radiation. Women who have tumors with this particular gene will in the future most likely be advised to have a full mastectomy.

Currently all women who have breast conserving surgery will undergo some form of radiation since statistics show that up to 40 percent of those who don’t have radiation after  a breast sparing procedure will have a cancer recurrence.

The gene discovery study needs to be fully completed before any new standards regarding lumpectomy and radiation can be made common practice.

(The photo above shows a single breast cancer cell, not the newly discovered gene.)

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.

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.

My friends Cecilia and Marie email me names of surgeons and oncologists. All of them are affiliated with the hospital closest to me. But this hospital is in a feud with Blue Cross Blue Shield, my insurance company. The news is all over the local papers. Given the insurance issue and Dr. Guru’s excellent CV, I will stick with him and not look further even though I have to wait two weeks to see him .

For the first time since my diagnosis, I Google breast cancer and a zillion entries take my breath away. Cancer looks scarier, deadlier, than I ever knew. I thought the “problem” was practically solved. Two people I knew, friends of friends, died from it, but those had been aberrations in my mind. Now my head is definitely out of the sand.

I don’t have enough specifics on my lump to be able to do basic research. For that I need a pathology report which nobody has shared with me. All the radiologist said was: Any questions?

How could I have questions when I had never heard of bio-markers, stages, phases, hormone receptors, Comedo cells, necrosis, and anuploids? The list of incomprehensible things goes on and on. Are they all in my lump and in which proportions?

Surfing the net about cancer feels like being thrown into a stormy sea with a cork to hold on to. From what I can glean breast cancer is light years away from a “cure.” I click to close my internet connection. I feel my pulse beat in my ears, my heart is pounding.

Away from the computer, I feel restless. I go outside to check the pool baskets and to skim off the water’s surface with the net. I go back inside and pick up around the house. I empty the dishwasher. I fold a load of laundry. I water the plants: Mundane, repetitive tasks that require a certain focus, but no exertion.