When do you buy a car without inquiring about cost? Probably never. Chances are you carefully research different brands of cars, repair records, gas mileage, safety records, dealer cost (so you know how low you can negotiate)  or you read used car ads for a good deal until your eyes bleed.

When it comes to your health, shopping for the best deal usually does not enter into your equation. If you are told that six weeks of radiation is mandatory following a lumpectomy, you just say: When do I start and where? You don’t say: how much would that be? Usually you pick the facility closest to you and one that is covered by insurance. You do not call around and ask how much others may charge. (They probably won’t even tell you.) Also, you’d like to think that  you chose a radiation oncologist on his skills and a facility based on its equipment, not on price. Most people go to the radiologist recommended by  their oncologist.

The reality is that even with good insurance, you will end up paying between 10-20 percent of the bills yourself. And here is the reality check: My bill for one month of radiation comes to $44,681.00.

This amount does not include the whole six weeks. It does not include the bill for radiation set up, initial consultation with the radiation oncologist nor does it include the cost of a CAT scan.

Of course the total amount of $44,681 is what people pay who don’t have insurance. I will pay a percentage of the adjusted rate negotiated by my insurance company.  If I did not have insurance, could I have asked for “an adjusted rate?’ Probably not. I would have been stuck paying the whole thing.

When your life is in the balance, the price becomes irrelevant. Yet when I write the checks, a few thousand dollars at a time, for my part of the bills, I cannot help but think of people who simply do not have it. I think of people who have to put it on a credit card and pile up high interest rates. I think of people who don’t even have the ability to put it on a credit card because they don’t have them or their available credit would  not cover their medical  bills. Combine this reality with the fact that a woman with breast cancer usually sees her income go down by an average 26 percent. In my case it already looks like my income for the year will be down by close to 40 percent. For one reason I work a lot fewer hours, and when I am at work I am distracted. And I have not even had to have chemo therapy, a major stumbling block in anyone’s work schedule.

“Dr. Weary, my oncologist, called me yesterday,” I tell Dr. Alpha, on my last day of radiation. “Please note that yesterday was Sunday.”

Dr. Alpha nods, waits to hear what I have to say.

I tell him how sad and disturbed Dr. Weary seemed when I nixed chemo. I admitted to Dr. Alpha that the idea of chemo scared me more than death itself. Dr. Alpha listens attentively. I suppose it is this precise trait that connects him with his patients. He does not seem annoyed. He does not seem distracted or bored. His face is alert, with an empathetic expression which makes you think he agrees with you and makes you talk more. But actually, as you reflect on it, you have no idea what he is thinking. Had his profession not been radiation oncology, I suspect he might have been perfectly suited for diplomacy. (Doctors of Osteopathy are trained to listen and to talk to patients from all walks of life, I found out.)

His listening skills, his neutrality, are such that I , at one point, feel emboldened. I blurt out that I think some oncologists have to give chemo just to have a viable practice. How could they make any money writing prescriptions for hormone pills?

Dr. Alpha does not look shocked. He nods.

“Yes,” he admits, that might be true for some oncologists, but not for Dr. Weary. He has a practice with all the patients he can possibly handle.”

I know Dr. Alpha is telling me the truth. Dr Weary is legendary in our city. Stories circulate about how personal and caring he is. He keeps people alive beyond everyone’s expectations. He often sits with his patients while they get their infusion. He called me on a Sunday. Maybe he should get a life I had thought. But learned that he has a young wife and four small children. He has plenty of life to live on a Sunday. Yet he called me because he is conscientious. I feel ashamed.

I inform Dr. Alpha that I missed an earlier appointment with him because I was out of town.

“Did you go somewhere nice?”

“I was be in San Francisco.”

“Business or pleasure?”

“Pleasure. Visiting my youngest daughter. When you get cancer,” I added, ”you start taking your pleasures seriously, “

Again, I immediately feel embarrassed. How incredibly superficial this must sound to a doctor who has a whole waiting room filled with seriously ill patients: The young woman with cancer in her collar bone, the lady with the meat loaf neck, the two young men with colon and prostate cancer. The teenage boy who has a shaved head and who comes in with a different adult every day. Hospital staff? Ward of the State? It does not seem like friends or family accompanying him. Dr. Alpha has patients rolled down to him on their hospital beds. They are kept in a hallway adjacent to the small waiting room. But I can hear groans and moans under heaps of sheets and blankets. Are these patients needing radiation for pain relief? Yet Dr. Alpha is poker faced. If he was tempted to slap me, he did not let on.

Uninterrupted I prattle on .

“And by the way, I hate AstraZeneca! They pat themselves on the back about their cancer drugs which nets them hundreds of millions in profits. At the same time they produce and sell numerous carcinogens. No wonder they don’t  explore pills for prevention or a cure.”

“I don’t like them much either,” Dr. Alpha says.

“During radiation I feel I am doing something about my cancer. Every day.  Now I just have to anxiously feel wait and see.”

He nods

“Yes, that is all normal,” he assures me. “This is how people feel.”

I wondered if this was normal for all radiation patients, or just his? Did life outside his aura of confidence and care seem cold and uncertain, scary? What about patients who had distracted, stress out radiation oncologists who were poor listeners? Was it Dr. Alpha that made radiation seem healing instead of destructive? Or was it, really, the idea that the machine killed cells in your body that you found comforting? Or both?

Aware of the ticking clock, his packed waiting room, of which he did not seem the least aware, I felt the need to get up and go. My six weeks of radiation therapy have come to an end. It has been remarkably easy. No pain. No nausea. No fatigue. But that is how it normally is with breast cancer. Radiation of other parts of your body is a totally different matter.

“Well, I guess I am ready to transfer my emotional dependence from you to Dr. Weary now,” I say.

I wanted to ask him to be my medical oncologist, the cushiest job he would ever have. How much effort would it be for him to call my local pharmacy to fill my hormone prescription and to do my blood work now and then? But I know it is time to bid Dr. Alpha adieu. Upstairs in the next building, I have my scheduled appointment with Dr. Weary and I am already running late.

Every day now the same routine: leave work for the hospital. Park curbside by the entrance and walk through the sliding glass doors into the main lobby. Take the elevator one floor down into the basement, turn a corner and – voila – radiation oncology. Change into the insane asylum robe, wait a few minutes before being called to lie down on the plastic foam bag and get zapped. You cannot feel a thing. You can only hear a hum from the equipment.

After a week of radiation, my right breast is red, feels warm, and a bit tender. Despite all careful instructions: don’t wash with harsh soaps, use aloe creams, don’t wear a bra. Don’t expose to sun light. Not now. Not for the next two years.

-Look at my breast. Is this radiation damage? I ask the two techs who attend me at each session. They are G., short and stout and severely menopausal. Fans her sweat attacks away with my folder. (At one session I cannot resist giving G. a card that reads: those who say “no sweat” have never been through menopause. ) The other tech is J., also short and fairly heavy set. She has a luminous black complexion, is cheerful, and has a great smile. She is making plans to take her 10-year old daughter to Paris on her next vacation.

They both glance at my red breast and laugh at my wild imagination.

-Honey, you will not be able to notice anything for at least three weeks, if that. It is way too early.

But my breast only seems to be getting redder, and feels hotter each day. I compare my left breast with my right by feeling them with the back of my hand and looking in the mirror. Yes, my radiated breast is much warmer than my left breast. I call Dr. Alpha, who I normally see only once a week.

-Your techs think I am a hypochondriac, but my radiated breast is red and hot although I am told it will not happen for weeks.

The next day, Dr. Alpha examines me, the same way I examined myself: By feeling the two breast with the back of his hand and comparing the color of each breast. He nods in approval.

-You are right. Again! says Dr. Alpha. Good thing you noticed too. You have an infection. It is not unusual after two surgeries. But it would have been difficult to detect later as your treatments proceed. I will give you an anti-biotic. He scribbles on his pad.

-Wow, Cipro, the athlete’s drug. Thanks. Do you have special instructions? Taken with meals? With a bottle of wine?

-Half of bottle of wine. Dr. Alpha chuckles.

Finally, I am scheduled for radiation therapy or rather: Preparation for radiation. I meet with a technician to get my measurements set in a foam contour.  Actually, it turns out to be  nothing fancier than a plastic bag that she fills with warm liquid. I  then lie  down and my contours are set as the liquid firms up.  When I come for my therapy I will  lie down in exactly the same position every time.

The radiation oncology department has two waiting areas: one  for family or friends who accompany a patient. In this area there is an aquarium and a small reception desk, a few arm chairs.   It is almost empty.

A door with the sign: “Radiology Patients Only”  leads to another small, crowded waiting area. The ceiling is low and covered with acoustic tiles.  The chairs are the same type as in the outside waiting area.The magazines in the basket are out-dated and dog eared. Staff members, mostly women in blue scrubs, mill about, going in and out of side rooms, opening and closing doors, appearing or disappearing from behind curtains,  seemingly without purpose. Back against one wall is a blue drapery and behind it some cupboards above a low bench. That is where I am supposed to change into a cotton gown, property of the hospital, one size fits all — or nobody.

I also have a CAT scan which takes but a few minutes. I lie down on a narrow bed that slides in and out through a dough nut hole. I have no idea that I am receiving 6000 rads of radiation through out my whole my body. It is a  hundred times more radiation than a regular X-ray. Nobody explained the high level of radiation I would receive. Nobody told me why they need to have my cat scan although I recently had an MRI or why the MRI images would not be good enough.

Every day, Monday through Friday, for the next eight weeks, I will receive a prescribed dose of radiation to kill any cancer cells that may have been left. The therapy will cover my whole breast with some extra shock treatments concentrated on the breast area  where the tumor was (the tumor bed.)

A linear accelerator produces the treatment x-rays and this special  therapy to kill cancer cells is known as EBRT – external beam radiation therapy. (Without radiation, 40 percent of lumpectomy patients have a local recurrence of their breast cancer.)

The exact level of radiation will be set by Dr. Alpha and his medical dosimetrist. The actual radiation therapy treatments will be handled by his radiology technicians. I am told that I will be checked by Dr. Alpha, the radiation oncologist, every Monday.

I get to pick my time slot. I choose  2.15 PM Monday through Friday.  (Should I not be able to come one day, I can come twice the next day, as long as it is six hours between the treatments.) Finally, I get a parking pass, a yellow 8 x 11″ piece of paper with the words radiation oncology written in magic marker. It  is valid for the next eight weeks. When put on my dashboard, it allows me to park for free right outside the hospital entrance doors and to  avoid the crowded parking garage.

I am all set for my personal Chernobyl.

Dr. Guru calls me at work with the pathology report.  “I just got it,” he stresses.

(So he did read my  blistering email after my first surgery. Then I complained about him not sharing the pathology results until two weeks after he himself received them.)

“Everything completely clear, just as we knew it would be. Margin a bit larger than 2 mm.”

“Good job then, “I say.

Dr. Guru asks if I have decided to fore go chemo and when I say yes, he tells me it would have been of  little or no benefit in my case.

“Why add all those toxins to your body?” .

“Why did you not say so right away? I ask. “You knew I was terrified.”

“I wanted you to make up your own mind,” he says. “Some people will agree to chemo for a one percent better chance of survival.”

This is nonsense. How can a patient, a lay person,  “make up her own mind?” Even someone like me, someone who has cruised the interned “ad nauseam” cannot really decide. A lay person will often misread statistics and project wishful thinking into her readings. This is natural. This is why a doctor will see another doctor when she is sick. A lawyer will not represent himself. You need a professional, someone with experience and perspective.  Preferably a professional with no skin in the game.

But I say nothing

Dr. Guru tells me I may start radiation “any time.” “Your choice of hospital is fine,” he assures me. “Alpha is excellent. Many of my patients go to him.”

(Suddenly, he no longer refers to Dr. Alpha as “that radiation oncologist.”

Dr. Guru sounds upbeat. And I am amused. Now that the icy patches between us have been salted and sanded, everything is on the up and up.

That night, I go to bed relaxed and content.  For the first time since I received my breast cancer diagnosis,  I do not wake up in the middle of the night. Not even briefly.

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.