But something has happened: I don’t exist anymore.
I’ve become a lab report. I want to remember a time when I could sit in the room and the doctors didn’t look through me as if I had already died. I want them to know that I got to dance with Elvis Costello on stage during a concert, that I say “I’m sorry” too much, that I always change my mind, so how can I make this decision?
It keeps getting worse. I need to pick chemotherapy drugs, because my tumor was over one centimeter. I even need to choose how I will get them—high-dose IV, or pills and IV. I am offered clinical trials. I am not qualified to be making these decisions. The stakes are so high that I can’t make the wrong choice.
I keep going to see famous doctors at famous hospitals: these are the Chanel, Gucci, and Prada of cancer. The doctors at one designer hospital are so famous that I am kept waiting for five hours in the waiting room. The doctors try to convince me that I need to do a clinical trial—that they created, of course—for my chemo. I can get more powerful drugs with a clinical trial, but when I ask them to walk me through the pros and cons, they seem annoyed. There are some pretty large cons: possible heart failure and early menopause. The pro: less than half a percent greater chance of a cure.
“Why should I do this clinical trial?”
“To benefit womankind,” one of them says, as if I should be in a heroic mood, because I might die anyway?
“My daughter will benefit womankind after she survives this disease,” my mother snaps back.
What one of the doctors tells me next stuns me: “It’s very strange, but all of my patients diagnosed with breast cancer get very good luck. Amazing things will happen to you.”
I never knew that so many doctors actually believed in “luck,” and that there is no consensus about whether I have bad luck or good luck and what I should do. I thought this was all about facts.
Whether I have good luck or bad luck, meeting so many doctors makes me realize that I am sick of being looked through and I need to devise a plan. They responded when I challenged them. They were angry, almost amused that my mother questioned their authority—that I asked them about the pros and cons. I decide that I am at a huge disadvantage. I can’t speak about my cancer cell types (yes, there is more than one type of cancer cell) and I don’t know the medical literature. I realize that I need to start showing these doctors who is really in control of her destiny.
My friend Jen’s mom, Jane, is a breast cancer survivor and she gave me two books on breast cancer when I was first diagnosed, with an inscription: Knowledge is power! I am unable to even open them. Jane is a ballbuster attorney, and she arranges my next consult with her own doctor and comes with me. She asks a lot of questions about my tumor and my prognosis. She is blunt and funny and suddenly we are all laughing. She is working the doctor’s office like she must work the courtroom, with some objections, but always polite. I am watching. I take notes. She gets me to ask for a copy of my pathology report. I see very scary words like extensive intraductal carcinoma and poorly differentiated—words that I would not want on my report card, and that are now describing me. Technical words about “clean” margins and estrogen receptor status being “negative.” I need to figure it all out.
Jane inspires me to keep seeing doctors and to keep asking tough questions, because they are all telling me that it is my decision. My decision? I didn’t go to med school. I didn’t complete a surgical residency. This is ridiculous.
My training to be a reporter at the Columbia School of Journalism, and all the research I have done on stories at my new job at 20/20 didn’t even come close to this story. My life is riding on this story.
I start taking notes in a reporter’s notebook like the ones I use at my job at ABC News. My file becomes my secret weapon. I spend hours in the Mount Sinai medical library. I pull every article I can about breast cancer and young women. I memorize the words in my pathology report: lobular (sounds like a type of pasta), intraductal (nice to meet you cancer).
But it is still so confusing deciding whether to have a mastectomy or a lumpectomy. All the male doctors are telling me that I can have a lumpectomy, which means I can keep my breast. Basically, they would only remove a small section of tissue around where my tumor was to make sure there are “clean margins,” meaning no more cancer cells. But I would then need radiation afterwards to zap any remaining cancer cells left. As part of the lumpectomy pitch, there are code words about leaving me “unchanged.” They are quoting a long-term study out of Italy that sounds like a brand of Italian designer shoes. The study found that women lived just as long whether they had a mastectomy or lumpectomy. But when I pull the study on Medline, I discover that I don’t even qualify for it because my tumor had an “extensive intraductal component.” When I tell this to a doctor his eyebrows go up and I can tell it is working.
The women doctors have boobs and are so over it. They are telling me mastectomy. Cut it off and get it out of there. I sense a booby bias: The men think it will be too hard for me to lose my breast. In fact, there is a whole movement in the cancer world called “breast conservation.” Jane says it sounds like a forest protection program.
At the end of each of my medical consults, every doctor tells me that it is my choice. It isn’t fair. I want this decision made for me. They need to understand that I am an ambivalent person, that just last week I couldn’t decide whether to serve hot food or cold food at my friend’s bridal shower. And they are the doctors, they are supposed to know what to do. I try to bypass the system: I close the door and ask them in a lowered voice, “What would you tell your daughter to do? What would you tell your wife to do?” They still dodge.
Tyler tells me he has made up his mind after listening to all of his doctor colleagues, but that he didn’t want to tell me what he thinks I should do until he hears what I want. He doesn’t want to influence me.
I go back to Dr. B, the first doctor, who cried, because I like his vulnerability. He looks me in the eyes. I exist. I want to see him when I wake up after surgery.
I choose a lumpectomy like he recommended. I save everything—I even have my kindergarten report card and all my baby teeth, every love letter I ever received. I know that I can’t give away my breast.
But the day before my lumpectomy, I am stumbling.
My best friend, Robin, calls me from France. She had a family trip planned before I was diagnosed and didn’t want to go. I made her go.
“Rob, what should I do?” I am sobbing into the overseas phone line. “No one will tell me what to do.”
“Ger, you’ll know what to do. You always do.”
Robin’s faith in me shows me that I can make a choice and finally trust it.
The most awful thing about my ultimate decision is that it still doesn’t guarantee I would live. I could cut off my breast and still die. That feels like it is the cruelest part after such a big sacrifice.
I call Dr. B. I am scared he will think that I am challenging his authority. I am scared that I will get him into trouble, because we were already on the books for lumpectomy surgery tomorrow, and this seems more serious than canceling a haircut appointment. “Dr. B, I think I should have a mastectomy instead.”
I pull out my medical file and list the reasons for my decision. He is silent. And then, “Geralyn, you’ve convinced me. You’ve made the harder, smarter decision.”
When I call Tyler to explain that I have cancelled my lumpectomy surgery and decided to have the mastectomy, he tells me that he’s been hoping for that all along. He just didn’t want to sway me. My husband must love me, I realize when I hang up the phone. But what is “me,” and can he really deal with what is ahead?
Even though I have just planned my cancer treatments, I need to believe that I have a future, too. That Tyler and I have a future. I decide to see one more doctor that no one referred me to. I need to see a fertility specialist. I might die, but I need to believe I might live.
During all my consults, the cancer doctors wanted no rol
e in my baby plan, and they tried to convince me that the song I should be listening to is “Stayin’ Alive,” not “She’s Having a Baby.” So I find a fertility specialist on my own. When I go on the Internet, the information is bleak. I make eleven calls explaining my situation, and only one doctor calls me back. I can barely hear him when I return his call on a pay phone. I strain to hear the words, “Very serious.”
When I arrive at his Park Avenue fertility office, the first thing I see—well, anyone would notice—is a wall full of babies. Smiling babies, beautiful babies, perfect babies. Babies. I know it is supposed to be hopeful, but it feels like a cruel taunt.
“Na-na-na-na-na—I had a baby and you can’t. Because you have cancer.”
The fertility doctor puts a probe inside my vagina to check out my eggs. I am embarrassed because I have been so busy planning my surgery and chemo strategies that I forgot to shave my legs. He’s a really young-looking, Doogie Howser type of doctor, and when I see his diploma on the wall I realize that we graduated from the University of Pennsylvania the same year. Maybe he will like me better knowing that my eggs were educated at the same place he went to school? Maybe he will try harder for my eggs?
After I wipe the pelvic probe goop off my unshaven legs, I hear the news I have been dreading. I read some articles about banking eggs—basically, it’s like putting your eggs in a safety deposit box before chemotherapy. That way, the poison won’t pollute the eggs, and in case I go into early menopause from the chemo, I’ll still have eggs put away on ice. The only problem is that in order to get the eggs to bank, they need to hyper-stimulate me with hormones, and the hormones could kick my cancer into high gear.
“Ethically, no one would give you hormones now, Geralyn. I’m sorry. I could go in and grab one egg just before you menstruate, before you start your chemo, but you need to have surgery to get that one egg and the chance of that one egg surviving isn’t worth it. Usually we need to work with at least four eggs just to get one that takes.”
I am heartbroken that I can’t bank my eggs. What would I do for a safety deposit box now?
I come up with a Plan B: I will just hit pause and get treated for my cancer and then get pregnant. But it’s not that easy. When I announce my brilliant plan to my fertility doctor there is silence. It is very likely, he tells me, that I will go into early menopause from the chemo. Even worse, my cancer might return after my treatment. That would mean more chemo, and then I would definitely go into menopause if I hadn’t already.
I try to start planning for every variation of my future, any future. I am desperate for a pair of headlights to show me I do have a future, even a glimmer of it.
I need to know it is there.
3
Headlights
I cannot stop thinking about the fact that I only have one week left with my breast.
And I cannot lift my head off the table at my favorite French bistro because it is hitting me that I might die. Tyler and my mom brought me here to cheer me up right after we left my bone scan appointment at the radiology suite to see if my cancer has spread to other parts of my body.
“Geralyn, honey, please lift your head up. Come on.”
My arms are covering my head and my cheek is flat against the soft white linen tablecloth. I think it’s the white linen tablecloth that is triggering my terror: It is reminding me of the white hallways of the hospital that I just left.
“Please, please, please lift your head up. Everything is going to be okay.”
My mom sounds so desperate as she asks my favorite waitress to bring me a glass of champagne. I know my mom and Tyler are trying to get my mind off the cancer but it isn’t working. They have both been with me at all these horrible consults and we all need a change of scenery. It is backfiring. At first they were laughing at me when I put my head down, but now that it’s been over twenty minutes with my head down they have stopped laughing. They are panicking and don’t know what to do.
I am panicking, too. It is a strange countdown, knowing that a week from now I will be in the hospital having my breast cut off of me. The panic hits me at inconvenient moments like this one when I realize that I’m a cancer patient now.
I definitely do not belong in the world of soup of the day, what should I wear today, news of the day. When the waitress comes back with my champagne I start to sob, and my back is moving up and down, and my head is still down on the table. I hear muffled voices, the waitresses are starting to whisper about the meltdown at table six, and the other chic patrons must be beginning to notice that I will not lift up my head because my mom and Tyler are pleading with me, begging me.
“Geralyn, it’s not so bad. It seems like the cancer hasn’t spread—we should be relieved.”
I’m glad I took philosophy courses in college because I realize that I must be having an existential crisis. I am not part of this world anymore. I always cared what people thought of me and in the past I would have been too self-conscious to lose it in this tiny tony place, but in the past I didn’t have cancer. I should smell the chocolate soufflé in the air and the warm summer breeze wafting through the large open doors, but all I can smell is the scary smell of the radiology suite. Instead of quiche I smell the alcohol I was swabbed with before the nurse put the rubber band on my arm to make my vein jump for the shot that injected the contrast dye. Instead of the baguettes the waitress has just put down on the table, I still smell the stench of disappointment in the air.
All I want to do is keep my head on the table and have a one-woman pity party because that visit to the radiology suite has kept me in that world of dying. I can’t switch the channel in my mind to be here in the restaurant. I am still encapsulated in some huge Star Wars machine. I am reliving that hour in the bone scan.
When the technician asked me if I was claustrophobic right before he put me into the huge machine, it made me think about all the things that I’m really scared of now that I have cancer. He dimmed the lights and I considered telling him that I am actually scared of the dark or pretending I’m a claustrophobic so I could get out of this thing. Because I am terrified I can’t handle more bad news. I’m scared of dying before I turn thirty.
The lab technician looked so serious that he was making me even more scared. Why couldn’t he just smile—would it kill him?
When the machine started to rumble I was embarrassed to remember the things that used to scare me:
Cockroaches.
Wearing no makeup and running into an old boyfriend who broke my heart.
Algebra.
Having to ride from the lobby up to the tenth floor alone with Barbara Walters at work—how do I make conversation for ten straight floors?
Having to tell my doorman that I forgot my key to my apartment again and could I borrow the secret key just one more time?
The dark (I always sleep with a nightlight on).
Now I am just scared that my cancer has spread.
I am scared they will tell me they can’t cure me and that I only have months to live.
I am scared they will discover that the pain in my neck is actually a huge tumor and not a pulled muscle from trying to look cool at the gym.
I am scared that people at work are just being nice because they think I might die.
I am scared my husband secretly thinks he married damaged goods.
I am scared not enough people will come to my funeral. I am scared that I did not amount to enough. I am scared that I will not have an obituary. Scared that my student loans will not even be paid off when I die (I checked the fine print and felt a little better knowing that they can’t make you pay if you’ve died). I am scared that my younger brother Howard will not be able to handle his big sister dying on him. I’m his big sister and I’m supposed to protect him. I am scared I have let so many people down by getting cancer. It is so strange to have cancer at twenty-seven. I’m not a kid with cancer—that is super tragic. But I am still young enough that it is quasi-kid tragic. I feel like such a baby having my pare
nts there with me at my doctor appointments. But I need my mommy and daddy now. I was never scared of monsters when I was little. I am so scared of cancer now.
I am scared to go to sleep because I think I won’t wake up. I will just close my eyes and I won’t even know that I died. Is that how people die? Will I know that I died? I am scared on rainy and cold nights that I will be lonely when I die, that I will miss everyone. I am scared I won’t be missed.
I am scared that my cancer is incurable. That it is aggressive—I mean, how could I ever have a passive cancer? No way. Just ask my Dad. I am scared sometimes when it is quiet that the cancer is starting to grow again. That it is swishing around my body as my heart is beating.
I am scared that I will never be the same.
That is why now I can’t just sit in a restaurant and pretend I am part of the normal world. Why should I even eat if I am dying anyway? I hear silverware rattling and I know that Tyler and my mom are starting to eat their lunch. I lift my head up a little and peek through my arm and I see the worry in Tyler’s and my mom’s eyes, but I also see they were optimistic enough to order me my favorite meal: a smoked salmon platter. They are picking at their food and look as panicked as I feel. I can’t do this to them. I need to be brave for them. I need to lift up my head.
“I’m sorry,” I start to sob again. I sound so muffled through my arms. “Let me take an Ativan and see if I can calm down. I promise I’ll try to eat in a few minutes.”
I have been trying to learn how to manage my anxiety and right now in this restaurant is the perfect test. I am trying to remind myself about my newfound secret weapons: Ativan, Affirmations, and Amazons . . .
Why I Wore Lipstick to My Mastectomy Page 3