The first appointment

July 21, 2010. 2:30 p.m., NYU Cancer Institute. Every moment since my diagnosis has been a way of getting closer to that time and place: the first doctor’s appointment.

The night before, with my daughter safely in Nantucket with dear friends, I put down the brave Mommy front and cry. The word cancer resurrects ghosts for us all. I guess that’s why people are so shocked that you want to talk about it. I guess that’s why it makes us all so uncomfortable. For me, the scariest ghost is my beloved father Gordon, who died of lung cancer 13 years ago. The night before my appointment, I could not stop thinking of the scared, faraway look he got in his eyes in the last month, how he seemed more worried that his family was upset than that he was dying, how he looked like a skeleton at the end. I cried for him. I cried for myself. I cried for my cousin’s husband who died of pancreatic cancer at just 42. I cried for the little kids I interviewed at the Stanford Ronald McDonald House two decades ago, dying 5-year-olds with the wisdom of sages. I cried for all my friends and family, for how great they are and how much I love them and want to be with them. I cried from fear, of dying, of losing my hair (Hey! I have a highlighting appointment on July 31!), of suffering through chemo (I’ve interviewed cancer patients and have some idea how awful it is.), of being isolated by people who are scared of my disease, and thus, of me. My husband, who is always a rock when it’s needed, just held me.

Then, we went to bed and got up to slay dragons.

First stop: Radiology office to pick up the films from my biopsy and my various mammograms. Sign the form, pay the fee. The beautiful clerk says she hopes it all works out. The gesture touches me. How many times a week does she hand over films that are profiles in cancer?

Next stop: pathology office to pick up the slides that were done after my biopsy. We enter a side door of St. Lukes-Roosevelt, one of the larger hospitals in Manhattan, and make our way down long, gray linoleum halls. We laypeople often think of medicine as the ER, beeping monitors and IVs, ORs. The halls remind me that so much of medicine happens in un-glamorous, anonymous corridors and offices. We pass a lab where people are assiduously measuring components of urine, blood and feces from the patients on the floors above. Please don’t get bored, lab techs. Please get it right.

Then we enter a nondescript office that is apparently the waiting area for the head of the pathology department. The scene could have been drawn as a Dilbert panel: gray, pressboard cubicles. Someone has taped up a bit of paper that says, “All stressed out and no one to choke.” There’s a lovely view of a tar and gravel roof with giant, industrial HVAC units. Two clerks are pecking away at huge piles of paper, clipping and filing endlessly. Pathologists have to study for, like, 15 years AFTER college. Giant St. Luke’s Roosevelt could not give them a more pleasant place to work? You know, so that they could be happy analyzing all those slides? So that they would get it right?

We ask if my slides are ready. Clerk number 1 says the person I talked to on the phone is not in. Summer is like that. Could she look? So she does. She shuffles through a large pile on a big horizontal filing cabinet. Oh, there they are! She picks up what look like four large scrap book pages, edged in red cloth. Each page has a dozen slides or so mounted in it, and you can see a smudge on each. There’s my cancer, sitting on someone’s desk, next to the correspondence file.

My ears buzz. Suddenly, a giant tense knot forms somewhere between my heart and my stomach. The cancer is REAL. It’s THERE, right there.

“Did you ask for these to be unstained?”

It takes me a minute to remember my biology courses of yore before I realize what’s she’s talking about. Those smudges on the desk are just breast colored. You can’t see the cells—you can’t see the line between cancer and healthy—unless they’re stained.

“No I didn’t ask for them to be unstained,” I reply.

The clerk starts muttering about people who don’t do the things they should. She’s probably thinking of whom she’d like to choke. She asks when our surgical appointment is.

“In three hours,” I respond.

“We can have them ready in two,” she says. We thank her profusely, we don’t have the leeway to indulge in choking people, and retreat to a rather-too-fancy Mexican restaurant nearby. It’s across from Lincoln Center, so the peasant food wears a tuxedo.

We split three margaritas between us. I eat too many fried things. My normally even-tempered husband gets very annoyed at the waiter. It’s not really the slow service that’s got him angry.

Of course, two hours later, the slides aren’t ready. Choking, anyone? My husband tells me to get on the subway for NYU, so I can do the intake paperwork. He’ll wait for the slides and follow.

The buzzing and the abdominal knot follow me to Columbus Circle. At Times Square, two handsome Caribbean guys get on the train with African drums. Normally, this is cause for looking straight ahead with the New Yorker, you-don’t-exist stare. But these guys are GOOD. They’re so joyful, and the music just pulsates. They get the whole car swaying. When I get off at the next stop, 34th Street, the adominal knot is gone. I give them a buck. I should have given them a 20.

It’s a fight across 34th Street to the east side, and the stretch of Manhattan where hospitals go on for miles. I arrive at the NYU Cancer Institute five minutes late. It looks like a Four Seasons hotel: curved, shining wood, Moroccan leather, flower arrangements, a circular lobby, everything calm, everything perfect. Except one glance makes it clear that the people in this beautiful space are stricken. Some are too, too thin. Others are too, too pale. Many wear scarves over bald heads. Some wheel IV poles along.

I introduce myself to the security guard, then realize his tag says he’s a “concierge.” Oh yes, they’re expecting you, he says with an over-large smile, and you have someone here who’s waiting for you. I turn around to see my pal Sarah, walking toward me with arms outstretched. She’s come to take notes because she’s an amazing journalist, a dear friend, and someone who’s just enough removed to be able to actually hear and remember what the doctor says.

“You can go into reception now,” the concierge says. At least, that’s what I think he says, the buzzing and the knot have come back a little. And it does seem like the Hotel Cancer. In reception or whatever they call it, we sit on Moroccan green leather and I hand over my insurance card and my driver’s license. Sarah looks loving, supportive and horrified. She waited in the luxurious, creepy lobby for almost half an hour. I need to remember to apologize for putting her through that. Intake is easier and faster than I’ve experienced in any medical setting. “They’ll see you up on the fourth floor,” she says with an over-large smile. Honestly, I know everyone means well, but I think it would be better if everyone stopped smiling quite so much. It’s NOT “all good.” We’ve got cancer here, guys.

Sarah and I skirt the creepy lobby and push the button for the floor that says “boutique physician offices” Wow, they not only have a schmancy lobby, but they have boutique physicians! Then we realize, that there’s an actual boutique on the fourth floor, a place to buy wigs, hats, bandanas and things. Please God, don’t make me buy things in there.

More smiles and handing over of cards, paperwork, reports and films follows. We go sit on more fancy leather. It’s weird to look around and realize that all the other women enjoying the endowed upholstery have cancer too. No one says much. Pete shows up with the slides. We all sit in a corner. Pete stares at a wall with shelves displaying pamphlets about ovarian, uterine, and cervical cancer, about diabetes.

“Look at all the things you DON’T have,” he says.

I tell him to shut up. “Shut up” is a bad word in our household, but I have cancer so I can misbehave a little. We talk about things that are NOT cancer. We even laugh. I think we are annoying people who are worried and sick. But if everyone at the desk is smiling so much, isn’t it OK to laugh?

We wait kind of a long time. The doctor is reviewing the pathology reports, the mammogram films, the slides that almost didn’t get stained. That’s fine, we’ll wait, just please get it right.

Finally, the surgeon comes out. She’s pretty and blond and smiling. We go into her office and it immediately becomes obvious that she’s whip smart. I can’t really remember everything she says. That’s why Sarah so generously has come take notes. She’s going to send them later this morning.

But here’s the thing the pretty surgeon says that I most remember, “We’re going to get you back to well. This is treatable.”

She says she thinks that most of my cancer is in situ, the homebody kind that hasn’t yet broken out into the world. She thinks that a small amount may have just become invasive. She says it’s being going on a long time, that this is slow growing. She says she would be very surprised if I end up having to do chemotherapy.

We tell her we’re moving in less than four weeks. She says that what makes the most sense is to do all the necessary testing here in New York, then have the surgery and follow up in San Francisco. If a second surgery is needed in the case that they don’t get it all the first time, she says, it’s better that the same surgeon do the follow up procedure.

“We’ll get you all packaged up, and you can have surgery as soon as you get to San Francisco,” she says.

So. I’m going to get an MRI of both breasts and armpits. I hate MRIs. It feels like being in a plastic coffin, but it’s better than not knowing if there’s cancer in my right breast too. Thank you, God, for my valium prescription. I’m going to get genetic testing because I’m adopted and have no idea if breast cancer runs in my biological family. If indicated, I may get an MRI-guided biopsy.

We are not out of the woods. The MRI could show cancer in the right breast. They could do surgery and find more carcinoma than the tests indicate, and then we’ll have all the fun of chemo. I may have the BRCA gene mutation that predisposes me for breast cancer and that may mean losing both breasts and my ovaries.

The road ahead may still be scary and difficult. But my surgeon says, “We’re going to get you back to well.” For me, for today, that is enough.


About leftbreast

I have had breast cancer. I was diagnosed at 47, and am now 49. I have finished "active treatment," two surgeries, chemo, radiation, monoclonal antibodies. These days, I only take a drug to suppress my uptake of estrogen, since my tumor was highly reactive to that hormone. I have been married to my husband Pete for 21 years. I have a stepdaughter, Maureen, 30, and a daughter, Erin, 10. I've been a freelance magazine journalist for 20-plus years, covering everything from Chinese foreign policy to Catholic nuns to endangered species. I have had a great life. I have lived in Asia and all over the United States. I have spent nights with tree-sitters in Oregon and with astronomers at the Mauna Kea observatory in Hawaii. I've been to a cocktail party on the poopdeck of a British destroyer docked in Shanghai. I've taken the bus to Tibet, and tramped through the cloud forests of Panama with biologists. A magazine sent me on a raft trip down the Colorado through the Grand Canyon; another sent me to cooking school for a week. I have spent time with celebrities, presidents and heroin dealers. I love my work. I have a loving, supportive family and more friends than I probably deserve. I have had the space and time to camp, ski, cycle, garden, cook and spoil my pets (an Australian shepherd, a German shepherd and a tabby cat). If it all ended tomorrow, I would have to say that it has been a really, really good ride. When I was in thick of treatment, I was simply fighting for more time. Now, I'm trying to connect the experience of cancer with the rest of my life, with the time that's been won. I hope the cancer never comes back, but if it does, I'll be ready. That's what this blog is about.
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1 Response to The first appointment

  1. Janet Galea says:

    You will be fine – Please be kind to yourself. What you have is VERY treatable with EXCELLENT outcomes…it is exactly what I had over five years ago. It is very slow growing…you will not need chemo….if it were fast growing, don’t you think they’d have you in surgery tomorrow? Don’t go looking for trouble where there isn’t any!

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