My husband and I are both stuck in the glue of our gloom, unable to reach out to each other.

I am restless, crabby, scarred, impatient, and distracted both at home and at work. I cannot concentrate on anything. All I do is obsess about a second surgery. It is not the surgery that scares me, but delaying the treatments has me excessively worried. And the type of treatment.

My husband is down for many reasons: his job, my situation, life in general. This time I do not have the emotional resources or stamina to try to help him break out of his zone. I am too preoccupied and self-obsessed. Also, I am, irritated with him.

He has not even glanced at any of the many brochures, articles, and books on breast cancer lying around the house. It would be good to have his perspective on matters. My husband has a scientific mind. He is the type who will read the instructions for a new Panini grill cover to cover. But the pamphlet “What to Expect from Chemotherapy” sits untouched on his bed stand while he gorges himself on a big fat business book. I am pretty sure he has not spent two minutes Googling breast cancer to learn more. It is as if he thinks: That is her problem. But if he had prostate cancer, I would be all over it. So to speak. I would want to try to figure out what he would be facing. What we would be facing.

Late one afternoon, I finally receive an email from Dr. Guru in response to my question about my lack of clear margin.

“I appreciate your concern. The primary excision was not oriented so I don’t know where they came up with lateral. The additional margins, inferior and medial, were removed after the primary excision was performed. They were the closest margins deemed from intra-operative inspection and no residual tumor was in those specimens. You do not need additional surgery. Sorry for the confusion.” Guru

I  read the mail several times without a clear understanding. Did he take out the tumor then went back in and scraped out some more? Is that what he means by “intra-operative perspective?” But what does “the primary incision not oriented” mean? He’d have to cut the first line somewhere.

I believe Dr. Guru when he says I do not need a second surgery (although I am still annoyed with him.) Had he only sat down with me to explain my pathology report, all this hysteria and worry and anxiety would not have come to pass. He would not have had to endure my blistering emails.

Yet, I am  relieved. Now I can move on to the next treatment. Will it be radiation or do I need chemo first? The mere thought of chemo therapy petrifies me.  Millions have endured it. So why am I such a complete whimp? And when will I find out if I need it? Where is my oncodx test result?

Three weeks after after my lumpectomy, and after some prodding and probing,  my pathology report arrives in the mail. I polish my bifocals. — the better to see you my dear –  and sink down in my favorite reading chair.

On page one, I immediately zero in on these worrisome phrases:

“All other surgical resection edges free of carcinoma”, “cribriform pattern with associated comedo type necrosis”, and “perineural invasion is identified” (slide 3H.)

Cells with cribriform pattern are considered less aggressive. Comedo type cells, on the other hand, are nasty little fellows. They are associated with the most aggressive form of cancers. Comedo-type necrosis, along with  tumor size, nuclear grade, and margin width are all important predictors of the probability of  recurrence.

Necrosis is Greek for death. Comedo type necrosis happens when the cells proliferate so fast they kind of choke on themselves and die. But other type of cells like cribriform, papillary and solid may  also suffer necrosis to a varying degree.

I realize I need to ask Dr. Guru what “my necrosis” means. Guessing is both a scary and an inaccurate activity.  I am a bit annoyed that he did not ask me to make an appointment and offer to explain everything.

Perineural invasion means that cancer cells and nerves are entangled. Do nerves provide the path of least resistance when cancer cells escape the breast, like veins and lymph nodes? I need to defer to Dr. Guru on this one as well.

Before I can compose an e-mail with questions for him, my mind is set on fire by the following:

-tumor less than 1 .0 mm from lateral resection edge

-all other surgical resection edges are free of carcinoma.

Now I am not an English major. English is, in fact, my second language. But “all other edges free of carcinoma” sounds to me as if ONE edge is NOT free of cancer.  Or do I need to take my TOEFL test again?

What happened to my “wide” margins?

In the morning, as soon as Dr. Guru’s office opens,  I call to nail down my surgery date.

“We can not plan anything until we have your MRI results,” his assistant sounds tired. “We don’t know what we’re dealing with yet. Yes, you can have a lumpectomy next Tuesday.  Anything more involved, requiring more time, will have to wait until the week after that, possibly until  the end of the month.”

End of the month? I don’t understand why she cannot “book” a couple of dates and then cancel one or the other. That is how you book hotel rooms and air line tickets when you are unsure of date and time, certain of the destination.

“What about all the doctors that need that slot? And what about all the doctors and staff members who need to co-ordinate everything?”

I did not think of those minor details. My line of thinking is more along the lines of me, me, me and now, now, now.

Joy tells me the result of the MRI and the left breast biopsy will be available  within a few days.

“So that is when we can set a firm date?” I ask, full of hope.

“No that is when he needs to meet with you to discuss your options.”

Options?

Since my diagnosis, I have come full circle. I have infiltrating ductal carcinoma in my right breast, and who knows what else might lurk in my left breast.

A month ago, I was declared  a “good candidate” for a lumpectomy. Now, 30 days later, I am being told by Dr. Guru’s office that we’re still considering “options.” I may have lymph node involvement. The MRI may reveal cancer not found on the mammogram or the ultra-sound. I may not just breeze through a lumpectomy, after all. I may face a full mastectomy.

It slowly sinks in: a candidate is not the same as a graduate. A candidate is not the equivalent of a hire or employee, a candidate is the equivalent of an interviewee. It is someone who has high hopes, wishing for the best.

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.

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.

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.”

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?

As I enter the semi-dark room for my third mammogram in a month,  I notice two large X-rays mounted on a back lit panel. One shows a breast with two lumps and a calcified area, all clearly circled in red. I assume this is the view of  my right breast and freak out at the thought of having a mastectomy, after all. (It is automatic when you have cancer in different parts of the same breast.)

Then I notice the markings in the corners. The x-ray with red circles is marked Left, not Right. It is in my right breast the cancerous hazelnut lurks – without red ink drawn around it.

My knees buckle underneath me. I sink down on the chair and stare at the back lit photos. The tech comes in, and I hope it is too dark for her to see my teary  eyes. But my voice trembles when I ask : “My cancer is only in the right breast, why do you have the left breast film up there with areas circled in red?”

The tech doesn’t seem the least bit concerned.

“No, there is no mistake,” she says calmly and continues to shuffle her papers. “The requested procedure is for the left breast.”

“No, it can’t be. I have a lump in my right breast.”

The tech walks up to the films and looks, not at my film of the right breast with infiltrating ductal carcinoma, but at  the left x-ray film before turning around.

“Are you all right?” she asks. Her tone is sympathetic, yet she keeps her distance by going back to the paper work on her counter.

“No,” I admit, “I am scared. What is wrong with my left breast? What are those three red markings for? You can tell me. Just tell me.”

“Sorry I don’t know,” she lies. But I know that she knows when she says: “Only the radiologist can tell you.”

This radiologist is another female, but she is the polar opposite of Dr. Dork  at the Breast Care Center. This new radiologist, Dr. Confident, reminds me of a cheery English school mistress: a plaid skirt peaks out from underneath her white coat. She wears high heeled – yet sensible – shoes. Her hair is groomed, but unfashionable. Her face looks kind.

Dr. Competent  tells me she has good news. Well, mostly. The big lumps in the left breast “went away” on the ultrasound. The calcifications are still there though.  Do I remember which breast and year my calcifications were biopsied? she wants to know. No I don’t.  “Then it would be medically prudent to do a needle biopsy now,” she says and she doesn’t even give me a dope slap for being so stupid. In fact, she exudes kindness, along with calm and competence. My MRI, she assures me,  is scheduled for a couple of days later. But first she needs to check those milky streaks in my left breast.

Friday afternoon. I drive back to the Breast Care Center for the fourth time in less than a month to retrieve my mammograms. I need to give them to my surgeon when I see him.

Again, I ruminate  over the hopeless, pointless, and completely unanswerable question: Why did they not find my lump last year, before it grew to 1.5 cm?  Why have annual mammograms when 80% of all lumps are found by the women themselves (or by their partners)? Why at least not have diagnostic mammograms with more views?

The staff is neutral whens I ask for my x-rays, although they must know that I am now a cancer patient. Why else would I pick them up?

This is what I need: Calm indifference, no looks of pity. No sideways glances. I don’t want them to be kind. Any acknowledgment of the seriousness of my diagnosis would worry me. Did they train the staff to be neutral? Or did it come with experience? Fatigue? Did it come naturally to them after awhile, like unseeing fish eyes in the subway system where you learn not to “look?”

I wait 45 minutes for my plates because I was supposed to have called 24 hours in advance. How could I have known? It occurs to me that a breast imaging center should give women a pamphlet , or at least a one-pager, describing the steps to take in the unfortunate event that they have cancer.

During my wait, I think: At least now I won’t have to deal with Alzheimers’.

Then lightening strikes.

One does not preclude the other. I can get both cancer and Alzheimers, if I linger long enough. My supposedly slow-growing cancer, kept in check by, perhaps, Tamoxofin and/or chemo, will keep my body alive until my mind is attacked by plaques.

Sunday dinner with extended family: Sister- and brother-in-law celebrating the return of a lost son. He is now home after two years in Japan, teaching and one year in Vietnam, doing what? We are about to find out. Luke is sensitive, intelligent, and well-informed, I can’t wait to hear about his Asian adventures. Yet on the 10-minute car ride over to their house I feel restless and “antsy.”  My mind is pre-occupied with cancer.

After dinner, we linger around the long dining room table and contemplate Luke’s travel stories while we watch the candles burn down and  sip the last of the wine. I glance at Ellen’s enamel painting of the fruit blossoms, and wonder if the enamel- and paint fumes were what brought on the breast cancer that killed her. She left behind a middle school child and a high school student. I, if it comes to that, will leave behind three college educated, adult children, all gainfully employed with their own health-insurance, cars, and homes.

Still, I feel I have to tell everyone. It would be too awkward to call around the next day, or, God forbid, send a group email. I assume, my cancer announcement will no longer ruin the evening.

Every one reacts calmly and appropriately. They show concern, but don’t seem spooked. Nobody tries to gloss over or dismiss it. Even the family member who seems to most enjoy  “organ recitals” does not share her archive of maladies, not even those with favorable outcomes.

Yet, that night I feel anxious. I sleep poorly in a mix of sugar high from the dessert and the angst of what my diagnosis, now four days old, really means. I am awake at 2.30 A.M; I listen to the steam whistle blow as the train rumbles through the city of Smyrna, or was the train down in Vinings?  I am awake at 3.30 A.M, then again at 4.30 A.M. The alarm goes off at 5.30 A.M. and rescues me from my insomnia, but I am so exhausted I can barely toss the covers aside to climb out of bed.