Something in Dr. R’s message does not add up. First I have an old pneumonia scar. Then it is radiation damage on the left lung lobe. But I had my right side radiated.  If anyone could solve this mystery, it would be my radiation oncologist, Dr. Alpha.

I call Dr. Alpha’s number, fully expecting to get his voice mail, but he picks up on the first ring.

No, he never took any x-rays of me, but I had a CAT scan before I started radiation. (How could I possibly have forgotten that?) He will look at it and call me back.

In less than an hour, Dr. Alpha is back on the phone. He has compared my  CAT scan from five months ago with the new one. The 8 mm granuloma on my lower left lobe does not worry him. It was there before I started radiation and has not changed at all.

“More worrisome,” Dr. Alpha tells me, “is the growth on the lymph node just below your heart.”

I try to steady my voice so it will not quiver. All my bluster and bravado from my days of radiation have  evaporated. I hear how meek and scared I sound. He must have heard it too.

“They never told me anything about a growth under my heart.”

“No, they wouldn’t. They try not to give you all the information. You want to come down and see?” offers Dr. Alpha. “I will show it to you and explain.”

I want to take him up on the offer and drive down and see for myself. But I also do not want to crash into his busy schedule. What do I know about x-ray images anyway? I did not even know you had lymph nodes under your heart. I will have to take Dr. Alpha on his word.

“You definitely need a PET scan,” Dr. Alpha says. “This needs to be fully investigated. I will schedule one for you.”

“But I have one scheduled for tomorrow at 1 PM. I guess I have to go ahead then?”

“Yes, you do. I will read it and get back to you as soon as it is done,” said Dr. Alpha.

I feel doomed. Dr. Alpha’s words – this definitely needs to be investigated – throb in my ears. “Investigated,” has a serious ring to it, like a grand jury inquiry or Senate investigation. And, yet, the idea that Dr. Alpha will get to read my PET scan calms me and reassures me. I know he will level with me no matter what the outcome.

Twenty minutes after Professor Oncology nixes chemo therapy, five minutes after Dr. Alpha, the radiation oncologist, calls to tell me that I need a re-excision to get clear margins (you are supposed to have 2 mm) I am sitting in my friend’s garden sipping tea from her bone china cup. I am “in the moment” trying not to mull over all the “what ifs.”   The insufficient margin frustration is behind me. Well,  almost.  My new bosom buddy, the radiation oncologist, took charge of the incomprehensible pathology report. He even called a day earlier than promised to let me know that I , indeed, need a second surgery!

Suddenly, my cell phone buzzes. A Magnolia Cancer Center number.

The way Dr. Guru, my surgeon, puts it to me, one might think that he himself had called  my radiation oncologist, to tell him to hold off radiation,  not the other way around.

“I am still not convinced you really need this,” Dr. Guru says. “But maybe it is not such a bad idea, after all.” Then in what seems like a vague apology he adds:  “I know you are very busy and all and this will be a bit of an inconvenience for you, but we might as well go ahead and put it behind us. “

“Might as well. But when?”

“Next week.” Dr. Guru does not hesitate. “We will schedule this for next week. Joy will call you to arrange the details.”

I feel stupid for being so happy. How much happier could I not have been  had  I been wrong about the re-excision, and able to start radiation right away? Is it not childish to be happy about being vindicated? After all, I am the one who will be the most inconvenienced, just like Dr. Guru admitted. Also, I feel mildly irritated that Dr. Alpha has to tell me not to hurt Dr. Guru’s feelings by “not rubbing his nose in it.” What other profession is filled with egos so fragile that they need to be perpetually wrapped in velvet and praise? A master surgeon is never to be reminded of a mistake, however slight or insignificant.

Dr. Alpha, my new radiation oncologist, flips back and forth  in my pathology report. He seems annoyed. Not with me, but with the report. He pushes the reading glasses back on top of his head. “I don’t understand this,” he says. His tone bristles, but he looks kindly at me as he stabs his finger at at the bone of contention, my pathology report and the words “all other margins free of carcinoma.”

I am a bit embarrassed because in the margin I have scribbled: WTF.

“Oh no!” I hurry to explain everything, not  to defend Dr. Guru but  to sooth Dr. Alpha. I don’t want him to get more agitated and annoyed with Dr. Guru. I fish the Vanderbilt report out of my purse and show him  exhibit number one: Vanderbilt confirmed the first pathology report from my lumpectomy.

“Dr. Guru explained everything in his emails.” I tell Dr. Alpha. “I can send you copies. ”

Dr. Alpha does not seem convinced.

“Well, something is wrong.”

He starts to explain why my pathology report  is wrong, then abruptly stops himself.  He realizes that I can not process the meaning of his words so he draws a picture. “Here is the lateral margin,” he begins and goes on to explained how there has to be one. Then he goes back to the report, flips back and forth before he, frustrated, tosses the pages back on the table. Obviously, the answer he wants is not there.

“Either your pathology report is wrong or your surgeon is wrong,” he says firmly. Although he seems irritated with the report, a bit angry even, Dr. Alpha manages not to be the least bit unpleasant. “This is not right and I can not treat you like this. I read these reports all day long.  All day long. That is what I do for a living and I have seen everything.”

I am tempted to ask him about “everything,” but I guess that it would take an eternity and be way over my head anyway. Darn I wish I had paid more attention to science and not blown it off as “nerdy.”

“Forget Vanderbilt! They just confirm tissue cells. They don’t confirm margins,” he says and hands back the Vanderbilt result.

“Either the pathologist marked the slides wrong or the surgeon is wrong and has to redo it and give you a re-excision.” says Dr. Alpha.

“But that will take for ever? He is busy.”

“Not at all. He owes you. He will just have to get up a bit earlier in the morning. I am here till seven or eight at night. My colleague, Dr. E’s car never leaves here before 7.30 PM either.”

I mildly defend Dr. Guru. “I am sure he works that late too. In fact, some of his emails are sent late at night.”

“I will put in a call to him right now.”

“Good luck!”

“Let’s start with your pathologist then. Do you have her number?”

I scroll through my Blackberry while Dr. Alpha in a typical Type A fashion watches over my shoulder. “No, not that number, that’s not it. Oh, so you don’t have it,” he says while I am still scrolling. “Well, I will take care of it and I will call you by Friday. This will be cleared up by then, one way or the other. Either you have to have another surgery next week or we can start your radiation.”

I leave Dr. Weary to meander through the bowels of the hospital until I end up in its basement.  “Radiation” reads one arrow pointing down yet another hallway.  Around that corner another door:  “Environmental Services.”

Toxic waste? Then I realize it is only a euphemism for the janitor’s office. Around the next corner from the janitor’s closet a sign reads: “Radiation Oncology.”

The ceiling is low, the tiny waiting room has a few wooden arm chairs, all empty, and a floor to ceiling aquarium with what looks to be salt water fish. The receptionist is heavy set, slow, none too friendly. She waddles off to make a copy of my pathology report before she sends me next door.

Inside the door, a figure, slightly bent forward, comes steaming towards me in the dark hallway,  walking with a bit of a limp. Hip injury? Knee? Still, Dr. Alpha looks fit and tall, dressed in a short sleeved silk shirt, well fitting slacks and a cool belt. Hugo Boss?

At first glance, I expect him to be “a man’s man” and a bit full of himself, someone who talks “at” women, or above their heads.

Wrong.

Dr. Alpha pulls up a chair, right next to mine, by the large conference table. He  is informal and attentive,  seems sincere as he immediately engages me. He asks how I discovered my cancer. We chat about my oncodx test result? What about my visit with Dr. Weary? Like Dr. Guru and Dr. Weary, Dr. Alpha carefully probes my neck. I dare barely breath as his large hands searches for a swelling or a node perhaps missed by the others.  But without as much as a glance at me, he sits back down and again checks the “shared decision chart” that I just received from the oncologist.

“I don’t want chemo,” I tell Dr. Alpha.

“There is this study from your neck of the woods,” he says. “It shows chemo at your stage to be of very little benefit.”

“From the Karolinska Institute?”

He nods.

Like with Dr.Weary, I have no sense that Dr. Alpha’s “patient time management clock” is ticking, even though I have been dropped into his schedule without much warning.

“Do you happen to have your pathology report with you?” he asks.

Although his receptionist just copied it for him, I fish out my own copy from my purse which by now is an ambulatory file cabinet. Dr. Alpha adjusts his reading glasses. In one nano-second, he is hung up on the “less than 1 mm margin all other sides free of carcinoma” issue,  the one issue that bothered me for weeks, the one issue  I just had given up on.

In Dr. Weary’s waiting room, I begin to fill in endless health questions on a clumsy electronic gadget. It allows him to transfer everything directly to a computer without errors, I suppose. But the design of the gadget is decidedly more  Soviet era style  than a modern American invention.

The waiting room is empty except for a woman who I guess  to be in her early 80s. White, perfectly coiffed, hair, immaculately groomed, but with a nasal, raspy voice, the kind that grates on anyone’s nerves. She is accompanied by a middle-aged woman who could only be her daughter.

The daughter, too, is immaculate: shoulder length blond hair, sprayed into a helmet. Green mini-skirt with a small pattern. Is it a golf skirt, a tennis skirt, or just a mini skirt to reveal her shapely tanned legs and aging knees? Her purse and sandals match the green skirt. A junior league type.

The middle-age daughter helps the mother fill in  health questions. Not on the type of gadget I have, but on reams of white forms. The daughter reads out loud: questions about hemorrhoids, bowel movements, head aches, medications, surgeries, libido: high or low? The mother does not appear to be hard of hearing, but the daughter still insists on speaking in a loud clear voice that reverberates in the almost empty, quiet  space.

“When did you have your biopsy?“

The mother seems confused.

“Biopsy?”

Was she uncertain about having had a biopsy or just about the date?

“What was the name of your surgeon?”

“My doctor?” whines the mother, “it was, let me see, “Wasn’t it Doctor C?” She looks at her daughter, clearly hoping the answer is right.

“No, your surgeon!” snaps the daughter.

“Oh my surgeon. Well, let me think.”

You can almost see the neurons in the old woman’s brain crash into each other, go in spirals at the speed of molasses, as the poor thing tries to recall the name of her surgeon. The daughter finally rescues her.

“Wasn’t it Doctor X?”

“Oh yes, of course,” the old woman relaxes. Grateful, she pats her daughter’s hand.

“Of course it was. Now I remember. But I always confuse him with Dr. Y.”

The daughter does not seem like someone who works outside the home. Could she not have taken an hour or so to fill out these forms in the privacy of the mother’s home  where they would have access to her records?

No, here they are, the ice cold, dutiful daughter, so clearly annoyed and inconvenienced; and the whiny, self-absorbed mother, who comes across not so much cold as she does superficial. The old woman seems much more interested in gossip than her own health issues.

In her squeaky voice she prattles on about a cruise, about some make-up she bought at Sak’s. About some couple with problems. The daughter bristles and snaps at the mother, her feathers inexplicably ruffled by even the most innocuous statements.

I realize the old woman is hard to take. I have no problem thinking that she may not have been the warmest and most available of mothers. She seems incredibly concerned with proprieties, decorations, and shopping. And I also recognize the anger issues that I had with my own mother, and my oldest daughter with me.

It is eerie how easily, and universally, mothers tend to irritate their children. Although, my youngest seem to have fewer issues with me than my oldest does. Perhaps because we are both extroverts, eager to please, talkative, while my oldest is more of an introvert, self-contained, quiet. Or maybe I have just been harder on my oldest daughter, more inexperienced as a mother. (How easy it must be to bruise a human being’s soul even with the best of intentions. ) Yet neither of my daughters are as irritated with me as I have always been with my own mother.

But for all the issues I had with my mother: her neediness, her complaints, her woe is me, please-cheer-me-up-demands, I would not in a million years ever have humiliated her by discussing the details of her deteriorating body in front of strangers.

Also, I feel bad  how easily these two women have managed to give me an adverse chemical reaction. Just a few days earlier, I  promised myself to be a better person. More tolerant.  Kinder. Yet, here I am, my tumor removed, my prognosis rosy, and, still, I am right back where I don’t want to be: Judgmental and impatient with others, the two habits I swore off just a few days ago.

“Sometimes when I consider the tremendous consequences that come from little things, I am tempted to think there are no little things.” – Bruce Barton

-When will you have your re-excision? my sister-in-law wants to know.

I tell her that I believe Dr. Guru when he says my margins are clear. He says that I don’t need a second surgery despite a pathology report  which seems to indicate a margin of less than 2 mm.

I tell my sister in law that my real worry is the prospects of chemo therapy. Of course, no oncology appointment has been scheduled yet. Somehow I am under the impression that Dr. Guru’s office will set it up.

-You need a second opinion,  my sister-in-law says firmly. I will call Doctor Weary to schedule an appointment. Now.

My sister-in-law’s friend died from breast cancer. Her margins were never clear despite several surgeries. But her situation was different from mine. She was much younger than me, by a decade or so. Her cancer was, sadly,  more aggressive. Her prognosis was more “unfavorable” from the outset.

I tell my sister-in-law that a new surgeon can not possibly figure out margins from an old surgery, now healed. But she will have none of it.  She calls me back with two appointments, less than a week out: one with Dr. A, her friend’s surgeon, one with Dr. Weary , a well known oncologist at the hospital that was feuding with my insurance company at the time of my diagnosis. But the feud is over. They will accept my insurance.

Although I cannot for the life of me understand how a second surgeon could possibly tell my margins, I feel relieved.  Someone, other than me, is doing the heavy lifting. A mill stone rolls off my shoulders.  Appointments have been set for me, whether they make sense or not. I realize how wonderful it feels to have been removed from the decision making process and able to just follow someone’s command

Energized, I decide to also ask the University Medical Center to send my pathology report along with a sample to Vanderbilt University for a second opinion.

Maybe it is not a bad idea to find out more about my cancer cells, given that both the Breast “Care” Center and the University Hospital says my cells are moderately to well differentiated and slow growing. Yet the OncoDX test indicates that they may not be quite as benevolent.

You, too, can send your pathology results to Vanderbilt for a second opinion. Check information below or go to www.breastconsults.com. In most cases, insurance will pay. If not, their fee is quite reasonable.

Q: How do I arrange for my slides to get to Vanderbilt (VUMC) for consultation?

A: Patients wishing to have their slides shipped to Vanderbilt should contact the originating pathology department and tell them you are requesting a second opinion from the Breast Consultation Service at Vanderbilt University (aka. David Page, MD and Associates). Request that they send the pathology slides and all reports corresponding to those slides. Also, ask them to include a face sheet of your demographics and billing information for billing purposes. The address to send the consults to is as follows:

David Page, MD
Vanderbilt University Medical Center
Department of Pathology
C3321 Medical Center North
1161 21st Ave. South
Nashville, TN 37232-2561
615-343-0072 (Phone)
615-343-5137 (Fax)

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?

“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?

No Pathology report .  It seems that I am off Dr. Guru’s radar screen.

Who cares? Not me! I am upbeat and sure of myself, thanks to the book “What Your Doctor Didn’t Tell You About Breast Cancer.”  I have been devouring it the past couple of days while waiting for the pathology results.

Tamoxifen — pouf — out the window  for sure.  I, for one, do not plan to  poison my body just to enrich Astra Zeneca’s corporate pockets. Now I question even the wisdom of radiation. Is that really going to be necessary?

I feel better than ever. Better even than before the  Breast “Care” Center called to tell me that they “regretted that the biopsy results were not what they had hoped.”

I grouse, around family and friends, that the service level at the University Medical Clinic is worse than  at a two star hotel. My insouciance is totally based on the assumption that no news is good news.

Instead of margins and oncogenes, I focus  on  a trip that my husband and I will take to visit old friends. The question is when? I am on the phone with our friends to figure this out.

“But what about your radiation schedule,” asks my friend M. “When can you get away?”

“Radiation,” I scoff. “Not even scheduled yet. Terrible service. No communication what so ever.” I am all bravado on the phone, but my friend M, a cancer researcher and biologist, is not amused.

“You have to take your care into your own hands,” he says. “Nobody else will do it for you.”

His words stick.

Of course. Who could care more about me than me?

Right then and there, I decide to step up my level of “care.” But how? Not only don’t I have the pathology report from my July 14^th lumpectomy.  ( I do  not  even have the first pathology report from the Breast “Care” Center .)

It is as if my pathology report has nothing to do with me. Everyone can read it, but me.

I have no idea if I have the oncogene. I have no idea what my margins are. I have no idea if I need chemo, after all. Or when it would start. I do not even have an oncologist!  How  can I take charge of my care when I don’t even know what my breast cancer care is supposed to be?

Friday. No news on the oncogene.  No news from Dr. Guru’s office all day Monday. Finally, I call his assistant just before closing time.

“We are waiting for your pathology report,”  she says. “Have you been to post op yet?”

“Yes, I had my ten second post-op  a week ago.”

It seems like his office should know that. Don’t they have a computer? Don’t they track their current patients? No Outlook Calendar?

“Ten seconds? Sounds normal,” she laughs. She sounds tired. Reluctantly, she puts me on hold to check for my pathology report and finds it in the in-basket.

I want Joy to read the report to me, at least the most pertinent parts, the ones about which I am on pins and needles: The oncogene and the nuclear grade parts.

“No, you will not understand it.”

Then, perhaps sensing that I am about to scream, she quickly changes her response to: “I don’t understand it.”

Of course. Does she think I was born yesterday? Is my age not on the chart? I force her to give me the high lights. She stumbles ahead: ER+, PR + (meaning that my tumor is sensitive to estrogen and progesterone. This is good news. They will respond to hormone treatments.) Lymph nodes negative. This is significant, but I already know that detail.

Dr. Guru’s assistant is clearly struggling. It is as if she is trying to interpret someone’s bad handwriting, not a computer printout.  I have “deja vu all over again.” But Joy is nicer than Dr. Morte. And she is not a doctor. Just an overworked, and probably underpaid, assistant. Out of mercy I free her from her misery.

“Please just email it to me.”

“We don’t have a scanner.”

One of the finest research institutions in the country, well in the Southeast, has no scanner?

“I can fax it to you. What’s is your fax number?”

I don’t want my pathology report to sit around our office mega fax machine for everyone to read. What if someone sees the word breast cancer and decides to swiftly transfer my job to someone with more potential?

“I will put your pathology report on his desk,” promises Dr. Guru’s assistant. “I will put it right on top so he notices it right away when he walks in tomorrow morning.”

“He will call you,”  she says. “He will call you tomorrow and explain everything.”