Elizabeth Edwards. Tony Snow. Fred Thompson. The sudden commonplaceness of cancer in the political landscape—and the extent to which it is discussed as something to live with, rather than to succumb to—illustrates the degree to which our attitudes about cancer have changed in the past few years, helped along by a vast and growing medical armamentarium. Two decades ago, cancer was a sentence, with a period at the end. Now it’s rambling—discursive, ending uncertain. What follows are stories that attempt to convey the blunt reality of “living with cancer,” a phrase already ubiquitous and in danger of losing its specificity. No two cancers are alike; neither, as the following pages show, are the experiences of the diagnosed.
On April 20, 143 cancer patients and survivors gathered in Central Park for this issue’s cover photo. One hundred forty-one of them are pictured here. See video of the cover shoot here.
Photographs by Jason Schmidt
Photographs by Jason Schmidt
JENNY SALDAÑA, 36, lives in Times Square and works for a cosmetics company. She is also a playwright. In January 2006, she was diagnosed with breast cancer and had a mastectomy followed by two months of chemotherapy. She’s currently cancer-free.
I’ve always had very dense breasts. The upside was that they were very perky and everybody thought they were fake. But the downside was that they were very cystic. In March 2005, my right breast was hurting and had a lump that’d become humongous. But the diagnostic place I went to said there wasn’t anything seriously wrong, even when I started having an amber discharge and my breast was really hard. Finally, I was crying and complaining about how mean those people were, and my doctor sent me somewhere else. There, when the sonogram woman touched my breast, she was like, “What is this?” And I’m like, “I know! Everyone’s been ignoring me, and that’s why I’m here.”
We’ve all been conditioned to think that the mammogram is the be-all and end-all. I’d had two, and they were negative, and two negative ultrasounds, too, so I’m just thinking that I have something benign. But it was cancer, and I was going to need a mastectomy. And that’s when I lost it. I’ve always been a very booby-centric girl. I’ve always been in love with my breasts—I have a hot rack! The options were an implant or what’s called a TRAM flap: They would give me a tummy tuck, which sounded very appealing, and from the tissue and skin, they create a new breast. And to me, there was no choice: I wanted the TRAM flap. Because I didn’t want to get fake ones, and I still wanted to make fun of other girls with fake ones. I kept making jokes, because they can take the tissue either from your butt or from your stomach. So I was like, If it’s from my butt, I’ll be called “booty boob.” I kept making jokes about my booty boob, but then it became my “tummy tit.” I’ve always been well endowed; I’ve never understood women sweating their breasts, because I have ’em. You know? I had perfect C’s. Like perfect full, full C’s, almost D’s. And they were perky, I could go around without a bra. So I never understood the big deal with implants, and why somebody would feel so driven to do that. But your breasts are so much a part of your womanhood. Even now, I’ve not gotten used to seeing myself without the nipple. I used to sleep naked, and I don’t anymore. And listen—you can look at me and you’ll never know that I have a tummy tit. But I see the little differences. I see that the new breasts aren’t as full on top. Still, now I’m even more proud of my breasts; I just want to show them, and I want to see if anyone notices the difference. I want to feel normal. I miss my breast. With this one, I kind of feel like I have a turkey stapled to my chest. A month after the surgery, when they took the bandages off my breast, the scar was really raw and black—and I lost it that day. I was calling myself the Bride of Frankenboob.
I’m at the point now that I need to feel like I’m the sexiest girl alive. I’m just starting to feel like a woman again. And it’s very important to be reassured that I’m still attractive. That may sound vain, but that’s what women need.
I have my pity parties every so often, and I’m entitled to them. But it’s not who I am. Now I’m on the Upper Manhattan Relay for Life Committee for the American Cancer Society. I’m doing the breast-cancer walk, and my team is called “Hooray for Boobies.” I have a T-shirt that says CANCER SUCKS, and I love wearing it because cancer does suck. I have a T-shirt that says DING DONG THE CANCER IS DEAD. I had it made. I haven’t worn that one yet. I think I’ll wear it to the next walk.
LARRY COMROE, 43, a real-estate agent, had just closed the sale of Andy Warhol’s former townhouse on Lexington Avenue when he was diagnosed with non-Hodgkin’s lymphoma in 2002. Last July, he finished the Ironman Triathlon.
After I was diagnosed, I went out and bought new clothes: I got dressed for every chemo session like I was going to work. I wore a button-down shirt and dress pants and hard shoes. You could see women doing the same thing—they had their wigs on, they had their makeup, they looked fierce. It set the mental tone. My chemo regimen was such that as much as my body could take, they were going to give me. On Thanksgiving morning 2002, I woke up and fell over. I couldn’t feel the back of my legs. My doctor was blunt: He said, “Larry, if we can’t stop the paralysis before it gets to your heart and lungs, you will die.” It took a month in the hospital for me to regain the use of my hands and walk again. Six months after my treatment ended, I decided to do a triathlon in 2004 with Team in Training, the fund-raising arm of the Leukemia & Lymphoma Society. I was 40 pounds overweight; I looked like a mess. I’d learned to walk again, but I didn’t know how to run. I’d lost my natural gait. You know when a fawn first gets up and flops over? It wasn’t pretty. I’d bike in the morning, and swim and run after work. At my first triathlon, in Westchester, I finished toward the back but respectably. Two years later, I finished the Lake Placid Ironman in 14 hours, 54 minutes, and 10 seconds; I’ve done fifteen events in three years and raised more than $2.8 million. A lot of miles and a lot of sweat.
LOY SMITH, 61
Smith is a Jamaican immigrant who lives in the Bronx with his wife. In 2001, he survived prostate cancer. When he was diagnosed with bone-marrow cancer last year, he was unemployed and without insurance.
At one time, I was financially well off. I was a CPA in Jamaica, but my business went bad and I lost nearly everything. That was part of the reason why I came here. I went to work for this gentleman who had multiple sclerosis and was in a wheelchair. My job was to drive him around and generally help him live his life. He had come down with this illness at the peak of his career, but he was so positive, not bitter. He was fortunate to be in the position he was in, because he was able to get care for everything that he got.
After he passed away, I lost my job. So I had no insurance when I was diagnosed with multiple myeloma, a rare form of bone-marrow cancer. I was at North Central Hospital in the Bronx. They asked me what insurance I had. When I said I didn’t have any, they said they’d take it from there. The social workers put in the applications for Medicaid. The drugs that I got for my treatment—there’s no way I could have afforded them. Once, I needed an emergency treatment, which required a lot of red tape to get it covered by Medicaid. So they called the ambulance—while I was already in the hospital. It took me from one section into the emergency room.
I don’t really have a fear of death, more of a fear of pain. Sometimes I wonder why I’m not more depressed. I look at it this way. I’ve had serious financial reverses, which threw me into very bad depression, to the extent that I felt that there was no purpose in life. But having survived that, I realized that no matter how bad things are, there is some hope. I carry on as normal. Some of my relatives and friends chipped in to help with living costs. My son is an EMT, and he’s moved in with me and my wife to help support us. My wife works part time as a nanny and she sells Avon and I help her. And I do some tutoring work and telemarketing to make extra money. Now, I’m waiting to get a bone-marrow transplant. And I’m hoping to do that with Montefiore, but am sorting out the Medicaid paperwork. My treatments, until now, were covered by emergency Medicaid, but I have to transfer to permanent Medicaid. So right now I’m coasting.
CHARLES TANENBAUM, 92, is a retired attorney and an avid book collector. Last year, he was diagnosed with stomach cancer and insisted on having aggressive surgery. He is currently cancer-free.
One doctor I talked to, he said, “A man at 91, he can bide time with chemotherapy and radiation.” And I said, “I want to live! What’s wrong with surgery?” He said, “At your age?” I said, “I figure I have a 20 percent chance of dying in surgery, and I want to gamble.” I think a lot of people die because they lose interest in life; they stop caring about anything other than playing golf or going south. Florida is a place I wouldn’t mind going after I die, but not while I’m alive.
ROSE TISNADO, 57, a transcriptionist, has cancer of the bile ducts, and is now packing up her East Village apartment to move into a hospice, where she expects to live out her final months.
I got my diagnosis around Christmas. They found the cancer on the liver first, but they knew it was coming from somewhere else. Sometimes they never find the primary cancer. Sometimes they can only find it in the autopsy.
I’ve always been pessimistic, so I said, “Oh, yeah, I always knew something like this would happen.” I asked the oncologist point-blank, “How many months would chemotherapy add to my life?” My prognosis was something like six to eight months. She said chemo would give me only two more than that. So I decided, What’s the sense? If I’m going to be sick, I’d rather just die tomorrow.
I just couldn’t tell my mother. She’s 84. She lives in California, so I just started lying. I said, “I’ve been having some medical problems, but they don’t know yet.” I lied to her for months. I didn’t tell my sister, because she has so many problems of her own. Her husband died two years ago. I couldn’t tell my brother, either. I had to tell his wife, because she’s a nurse, and she told him.
People said, “You should get one more opinion.” I appreciate that they care, but a lot of friends came up with scenarios that were out of this world—stuff like scorpion-venom injections. I would be hooting! One friend took her mother to this resort in the Bahamas where this guy injects you with whatever makes the cancer go away. I looked it up on the Net, and it says “quack doctors.” And he charges you $10,000. Where am I supposed to get $10,000? “Put it on your credit card,” she says. Well, the logic behind that is you’re gonna die, so you won’t have to pay it back. One friend heard about a doctor in Santa Barbara who can cure cancer over the phone. Another friend was like, “You should change your diet, be macrobiotic.” Another guy is into that whole fasting for seven days thing—colonics and all that. I was like, “I’ve been fasting for seven months, unable to eat. If that works, I should be super-cured!”
All my friends were calling me up—“Come and live with me, I’ll take care of you.” I was just horrified by the idea. I told them, “I have to work. I have to make money. I have to take care of things myself.” Then I started getting weaker. I couldn’t go up the stairs—and I used to run up those stairs with my laundry bag. I started dropping weight like crazy. I was at 218, and now I weigh like 135. I couldn’t take care of myself.
Hospice embraced me. It’s incredible what they do. If I had money, I’d leave it to them. I called to schedule when I could come in, and they said, “No, honey, we come to you.” Before, I could barely get out of bed half the time; they gave me a fentanyl patch—that’s a pain patch—and I couldn’t believe the difference. Then my hospice doctor put me on steroids, and a day later I was eating like a horse—having fantasies about roast beef and Yorkshire pudding at three in the morning. I called my family, chattering away, and my brother said, “Rose, you sound high.” And I said, “I am!” When I’m sick, you know, I can be a cranky bitch—just roll over and want to die. But when I’m well, I feel absolutely, let’s say, cured! And to continue living my life is obviously what I would want to do. I mean, everybody would.
My problem now is, I don’t have money. Luckily insurance covers the hospice, but that runs out. My dream was to stay in my apartment and die there. My thing is, I live alone. I’ve lived in the East Village for 20 years, since I moved from San Francisco. My family, of course, would have loved for me to stay with them, but I feel that my life is here. Then my social worker told me about the hospice residence. It’s in a building that’s about nineteen stories; the sixteenth floor is leased by the hospice. And your care is micromanaged. They have eight studio apartments—I’ll have my own with a little kitchen. There’s a beautiful terrace, and I look forward to going there in the summer—I love to read—and it should catch a breeze. What’s not to like? The funny thing is that it’s the most luxurious place I’ve ever lived. I keep singing, “I’m moving on up!” Of course, I have mixed feelings. I still get anxious about bureaucratic things—Medicaid can take weeks, months. And I’m going to miss my neighborhood. But I’ve been getting ready for the past few months—sorting the things I have, deciding what I want to take, and giving things away to friends.
Before you die, you’ve got to let everybody know how you feel about them. It’s been a beautiful experience, ironically, a joyous experience. I’ve become closer with my family. My mother has everybody praying for me—she has novenas being said in Ireland, and we’re not even Irish. I have friends I’ve fallen out with, and this has been a time when people have come back in my life, and we’ve been able to talk. I think it’s easier to go once you’ve done that.
My goal now is to work on the spiritual side and getting ready to die. I’ve been concentrating on packing all the joy I can into every day. A friend of mine has been studying Buddhism for seven years. He just got back from Colombia, and he kept telling me, “I love this man, Chodo, my teacher. I really want you to meet him.” And he visited me and helps me work on my meditation. Because there will be a time where I’m not feeling good, when I’m on my way out. And he’s going to help prepare me for my death. He went through the meditation where you start at your toes, and work your way all the way up to the head. I have to work on this because I’m hyper with the steroids.
I’ll tell you something else that helped me—this book, the Tibetan Book of Living and Dying. It really impressed me because in the West, we don’t talk about death. When they told me about my cancer, I thought of that book. I’ve read it about three times now, and I’ve given it to a lot of people.
They say it’s very hard to determine a date. As long as I don’t feel any pain, I don’t give a damn. I’m more open to the idea of reincarnation than I once was. But the afterlife wouldn’t be anything like Christianity—I’m totally turned off to formal religion. I don’t want to use the word God, but the life force, the energy doesn’t die. I tell everybody, “I’m coming back.” I threaten my sister, because she’s a procrastinator, “If you don’t do that thing, I’ll come back!”
KATE DAVIS, 4, was diagnosed with leukemia sixteen months ago. Because the medication has wiped out her immune system, she leaves the house only for doctor’s appointments and weekend trips out of the city, where she can ride her bike outdoors.
When I was 3, I got bruises. Too many. I looked the same, I just had hair. We went to the hospital nearby. And another hospital. Then we found the right one. It’s all kids there. I pray about everyone there who is sick. Sometimes I feel sad that I have cancer, but not angry. I want to go to school. I can’t because there are germs there. But it’s not bad anymore. I don’t have to get a back check. A back check is when you go to the doctor and you have cancer. And you can’t feel anything because you fell asleep! It doesn’t really hurt. Sometimes you wake up angry after—or happy. I wake up happy! But one time I woke up angry—like the Incredible Hulk. Mommy always says, “Are you going to wake up like a princess, not the Incredible Hulk?” And I say, “I’ll try, Mommy, I’ll try, Mommy, I’ll try, Mommy!”
LINDSEY BRASS, 27
A week before her final exams at Benjamin N. Cardozo School of Law, Brass was diagnosed with leukemia. She spent the next year in and out of the hospital for treatments that included a stem-cell transplant. She’s currently cancer-free but still receives chemotherapy every month as a preventive measure.
I think cancer is worst for young adults—all your friends are moving on, having boyfriends and babies. It does a lot for your perspective and all that baloney, but you’re stuck at home, miserable, and you don’t have hair. I had a rash, and my ears kept getting clogged. I got so many IVs that my veins gave out, and I always had enormous bruises on my arm. I had a sunburn from the radiation, but only the top half of my face. At one point I was on a liquid diet and steroids. Steroids make you hungry: at 2 a.m., I’d wake up starving and hobble over to the pantry—and get out Jell-O, because that was all I could eat. I also got neutropenic—it’s called “chemo brain.” You don’t even have the concentration skills to read a book. I couldn’t even just sit for two hours, because I’d fall asleep.
I was in the hospital for six days at a time getting chemo, and the weeks when I wasn’t in chemo I still had to go in three times a week. I couldn’t see my friends, because I had to avoid germs. I had a bad roommate situation—when I was first diagnosed, she canceled her Passover vacation, but later, when we got in a fight, she threw it back in my face: “I came to visit you in the hospital all the time.” People ask me if I’ve been dating. How could I date? I’m bald. I gained 30 pounds. What do people my age talk about? I couldn’t tell you. I’m at home watching television all day. I just want to go out and have fun, but I have to stay home and take my pill at eight o clock.
JODI SAX, 41
Sax, a lawyer, was diagnosed with terminal colon cancer in fall 2002. For five months, she prepared herself for death, as family and friends rallied around her. The initial diagnosis turned out to be wrong, and a year after her first hospital visit, Sax found herself cancer-free. Lately, she’s been suffering from fatigue and joint pain; her doctors have yet to pinpoint the cause.
I moved from Los Angeles to New York in late August 2001, I sold my house, uprooted everything to come here, just for a change of scenery. On September 11, I saw the buildings crumbling to the streets. I walked around in a daze for months, and I started to not feel well. At first, I attributed it to my overall state of shock, then I got progressively more tired, to the point where I couldn’t get down the block without being completely exhausted. Then I started having acute abdominal pains. I went to a gastroenterologist. She did my blood work, and she immediately checked me into a hospital. By that time, I was pretty sick. They thought that I had stage 4 cancer, which is terminal.
My mother flew in. My brother, who lives in Portland, Oregon, came and got an apartment in my building and took care of me. My whole family would come with me to the doctors. I hadn’t spoken to my father in three years. He has a habit of disappearing, then showing up when it’s convenient. When I was sick, he showed up, and was like, “Oh, I’ll take care of you.” In that sense, it’s weird—it was actually a really happy time. I was getting so much attention. I didn’t have to work, I didn’t have to do anything I didn’t want to do, I was being showered with presents. There’s a sociological term for it—I think it’s called the secondary benefits. And I was on all these drugs, so I was high as a kite all the time.
I had the tumor removed—and after that, it became a different experience. During chemo, I felt so crappy I just wanted to lie in bed and not talk to anybody. I wasn’t throwing up constantly, but I was in the most severe pain I’ve ever had. Eventually, when the pain went away, that was sort of an out for my father. He was like, “Okay, you’re done.” I had to go back to work really quickly, but I didn’t have any clients because I’d been out of the loop for a year. I never really liked being a lawyer, so going back was depressing. I was really angry with my father. The good thing is, I started a nonprofit to help young adults to figure out what to do when the doctor says, “Okay, see ya.” It’s a very low-paying job. But it’s gratifying.
ALAN MENIKOFF, 59, is married with two grown children. He was diagnosed with advanced kidney cancer in 1999. A total of thirteen surgeries on his kidney, leg, lungs, and brain kept him alive, but the side effects took a hard toll. In March, facing a third brain surgery with long odds, he opted against it.
It wasn’t easy to sit down with my wife and the children and say, “We’re not going to fight this anymore.” My wife asked me, “Do you regret your decision?” and I have nanoseconds when I regret it. But in a strange way, it’s a relief. You know, in Judaism, shivah is a coming together when someone dies. I thought it would be nice to have a shivah when I’m here. About 50 relatives and friends came to reminisce about what we’d done together. It was quite lovely actually.
JOSEPHINA PRINS, 81, is a survivor of Auschwitz. Two years ago, she was diagnosed with multiple myeloma. She is now receiving the second of two rounds of chemotherapy.
The death march was in January 1945—three days of walking in the snow, and then I was in an open cattle cart for three days more. Most of my family was murdered. In the camps, I was never afraid of these Germans. I told them so, and one gave me a big smack and my tooth fell out. He called me “the impertinent Dutch girl.” Myeloma is a hideous disease. If you’re lucky, you go into remission, but I haven’t done that yet. Still, I’m optimistic. Human evil is worse than this cancer.
DAN FOSTER, 57
Foster was diagnosed with rectal cancer a decade ago. His doctor, anticipating surgery, told him that dropping from 230 to 170 pounds would greatly assist his recovery. He lost the weight and, having experienced the fruits of exercise for the first time in his life, has since embarked on many long-distance fund-raising walks. In 1999, a recurrence of the cancer spread to his lungs, but he now has a clean bill of health. He organizes “Dan’s 5K Fun Run” for cancer charities from his home in Gerritsen Beach, Brooklyn.
When my doctor told me to lose the weight, I was kind of overwhelmed: I didn’t expect he’d ask me to lose that much, and I’d never even liked running when I was a teenager. But I cut out junk food and started jogging every day, from my house up to the Resurrection Church. I’d get up there and say a prayer. When I went into surgery, I was 170 pounds on the money. The running probably didn’t do much—I didn’t run that far! But it kept my mind in a good place.
About six months after my surgery, in 1997, I was sitting in a meeting at the hospital, and some nurses and other volunteers were making plans for National Cancer Survivors Day. I said, “I think I’ll walk out to Montauk.” It just came out of my mouth—and as I started to think about it, I realized it was probably a little too early to do that distance. When I had gotten back from surgery I couldn’t even make it from my house to the corner. So instead I walked from my parish in Brooklyn to Saint Patrick’s Cathedral, which is around fifteen miles, and did it again the next year. By 1999 I was ready. I walked from the Montauk Point Lighthouse to Saint Patrick’s Cathedral—140 miles—in seven days, starting on National Cancer Survivors Day. After the first day, I put my feet in the pool at the place where I was staying and when I went to get up, I couldn’t. My legs were cramped, and I had to crawl on my knees to a fence to hoist myself up. The next morning, I was walking around in the parking lot and my legs were tight. A car turned in—it must have said on the radio or on TV where I was staying—and someone rolled down the window and said, “Let’s go, Dan!” The adrenaline rush … I wish everybody could feel something like it. It felt like I hadn’t even walked the day before.
On my last day, there were police with me, as there had been the whole time. When I started walking over the 59th Street Bridge, I had chills; when I turned onto Fifth Avenue toward Saint Patrick’s, the police put their sirens on. I felt like all of those who had succumbed to cancer were with me. I was walking by myself, but I wasn’t alone. I felt like I could have walked forever. There were people running alongside me, people were honking their horns, some people at Saint Pat’s asked me for my autograph. By the time I was done, I’d raised $20,000 from all the people who stopped on the highway. My wife and I were blessed by Cardinal O’Connor, and we took a limo back home. When I got back, I think I walked over to the pizza place. My body was still going.
JOEL NOWAK, 56, lives in Brooklyn Heights with his wife and has two grown-up sons. Over the past decade, he has been diagnosed with thyroid cancer, prostate cancer (twice), and kidney cancer.
In 1998, I was shaving and noticed a lump under my jaw. My biopsy came back positive for thyroid cancer. I wasn’t too panicked, because I had done some reading about thyroid cancer, and I looked at it as something fairly easy to control. Fortunately, I wasn’t aware that people do die from it. After my surgery, the pathology report came back negative. I was clean.
Then came the second diagnosis. I have a long family history of prostate cancer. One of my blood tests turned up a high PSA count. Again, I wasn’t all that worried. In retrospect, I realize how naïve I was. They cut out the whole prostate. Now I am on a hormonal blockade, which has turned me into a chemical eunuch. I can no longer have an erection. I could sit here with this big porno flick up there, and it’s like, “Okay, who cares?” And this is a cost to my wife. We always did well sexually and we enjoyed each other very much, but she has never complained. She said, “It’s okay. It’s more important to have you.” But a lot of guys and myself, we have trouble buying that.
I had gone five, six years, and I really thought there’s no way I’ll have a recurrence. Then my PSA went back up and I was devastated. I look at this as a death sentence, and it is. There is no cure for recurrent prostate cancer, and it is not a pleasant way to die.
It turns out I also had a large mass in my left kidney. They took out my entire kidney, and the conclusion is that it was primary kidney cancer. Unrelated. I was now a triple guy. As one of my docs said, it’s like I must have been very evil in my former life.
I once asked my oncologist, “How long am I going to live?” He said that if he had to make a guess, I would probably be his patient in five years but not in ten. For me, cancer is everywhere. I assume that every other person I see has cancer. I know that’s not real, but it feels that way. I had an office manager who died of brain cancer about three years ago. The woman I hired to replace her was diagnosed with breast cancer six months ago. My mom died of cancer about a year and a half ago, my father-in-law a little over a year ago. I will tell you this, I learned a very important lesson from someone I saw dying from cancer. Their life had become so bitter. Their last year was spent being angry at everything and everyone. I remember thinking that this is not the way to live.
ERIC FRUHSTORFER, 64, dropped his insurance in 2002 to keep his business afloat. Three years later, he was diagnosed with bladder cancer, and his bladder was removed. Last summer, he found that the cancer had metastasized; unable to tolerate chemo, he has opted for only palliative care.
“I’d had an easy life as an executive at Van Cleef & Arpels, I’d started a multimedia production company. That worked well until 9/11, when the market got tough. I had twelve people working with me; I had to reduce it to six, and I gave up my health insurance to pay my guys. Then, in 2005, I started having symptoms. The day after Christmas, my physician said I had bladder cancer. I had three procedures, including a radical cystectomy, taking off the whole bladder.
How did I pay? In other times, I helped people through college, and the cosmos seems to be paying it back. My friends helped—six-digit figures altogether. After the third surgery, I had no money left. I got temporary Medicaid, which lapses on June 26. I am under review to get full Medicaid, which is likely, and I turn 65 in June, so I will get Medicare.
In July 2006, a cat scan showed metastases. For chemotherapy, Sloan-Kettering went down from $100,000-plus to $50,000; I had 25. And the answer was no—either the full amount or nothing. Bellevue would like you to have insurance, but they treat you with respect if you don’t. So that is where I went. Unfortunately, I got very bad infections. The choice was dying from cancer or dying from chemo. So I am beyond the reach of classical medicine. I have no idea if I’ll be here in one month, six months, a year. Statistically, it’s six months, but it was six months last year, so we never know.”
VINCENT SANTILLO, 38
Five years ago, Santillo, a private-equity banker, had just married his male partner of ten years and was talking about adoption when a routine exam turned up a prostate tumor. Recovering gave him a new calling: He’s now studying to be a urologist.
It’s fortuitous that I even got checked. I went to a new internist, and he looked at my family history—an uncle, my father and grandfather, all had prostate cancer. When a urologist told me I needed a biopsy, I walked out of there hysterical. A week later he called me. I was in a meeting in my office. My co-workers knew it was “the call.” I had actually told everyone about it. I know that might seem really stupid, because you don’t want it to affect you careerwise, but I can’t be that way. So he told me it was positive, and I knew right away I’d need the full-on, radical prostatectomy, because at my age, radiation is not an option. You just have to get it out. I told the surgeon, “This is the luckiest day of my life.” I knew that in five years I would have come in complaining of trouble peeing, and it would have been too late. A guy whose wife I met on WebMD—we were diagnosed at the same time, at the same age—he died last summer.
When they first pulled the catheter out, they told me to bring a diaper. And they were right—I felt a leak the first step I took. It can be very isolating, very embarrassing. Ejaculation is never going to happen again. They turn off a switch. And not only do you not “work,” but you’re with someone who does “work.” Any cracks you have in your relationship, the cancer gets in there. But you know, I wouldn’t change a thing. My marriage is so much stronger now.
I was sitting at home after the surgery watching TV, and it just hit me—I should have been a doctor. I made the wrong choice. My job was, and will still be, risk analysis: Here’s the information, but you make the decision. I can’t wait to do this with patients.
MARGARET CIEPRISZ, 38, was newly wed when she was diagnosed with ovarian cancer. Before surgery, she had healthy eggs removed, and now has a daughter who was carried to term by her sister.
I had been having some minor stomach discomfort. I thought it was just stress—I was in that pre-wedding stage. A routine physical revealed that my ovaries were somewhat enlarged, but after the doctor took my medical history, he said not to worry about it. Every month or so afterward, I went for a sonogram.
I got married in June 2001 and moved from Washington, D.C., to New York, and by the end of the summer, the radiologist said, “You know, it’s not shrinking. I think it’s time you had them looked at.” The surgeon who was going to perform the laparoscopy thought that he was treating a routine case of ovarian cysts. When I woke up after the procedure, the doctor said that what they found was not the routine case of ovarian cysts that they thought they were looking at. I might have to lose not just my ovaries but my uterus as well. That’s when it started to dawn on me: Not only did I have cancer, but I might not be able to have children.
At that point, they knew it was stage 3 cancer; I was definitely going to lose my ovaries. Further tests were needed to see whether they’d be able to save my uterus. If there was any chance to be able to have a child that was biologically mine, it would involve delaying my surgery. The doctor explained that I would have to take fertility drugs to increase production of my eggs and ultimately get IVF—if I still had a uterus. When my sister Ann heard the doctor say that, she immediately said, “I’m not using my uterus; you can use it if you need to.” My heart swelled, because to have this little hope—from what everybody started telling me, the success rate with frozen embryos was pretty low, like 30 percent—made everything ahead of me more bearable. Then my sister asked what my chances of survival were, and we were told that the number was pretty low: 20 percent—plus the fertility drugs might increase the chances that cancer would spread. A part of me felt selfish because of the added risk and the fact there are so many children who need to be adopted, but I also thought, Why can’t I have this hope? I just wanted to try it and didn’t think it was too much to ask to go ahead with it.
All the surgeries were going to happen at the same time. My ovaries had to be removed, and my eggs were in there, so they had to coordinate it so my eggs would ripen. And there was no room for error. I couldn’t wait another month for another batch of eggs. The endocrinologist created the embryos with my eggs and my husband Kenny’s sperm and froze them, and the gynecological oncologist removed my ovaries and uterus, so everything was done.
The chemo was pretty nasty, but it was successful. About a year after, my oncologist pushed me to start thinking about if I wanted to try for a child. I was a little hesitant, because how can you bring a child into the world when you don’t know if you are going to be there? But despite all my concerns about little cancer cells lurking, I felt good. I thought I beat the odds. Kenny agreed, reasoning that anything could happen to either of us at any time, so why wait?
Bringing it up with my sister was like asking somebody for a date. I was tongue-tied and nervous and scared. I thought maybe a year and a half ago she’d been caught up in the emotion when she had just immediately volunteered to be a surrogate. But she said, “Yes, of course. I said yes a year and a half ago and I’ve thought about it a long time now and I know what’s involved and I want to do it.”
After having to go through all sorts of injections and blood tests like the ones I had when they harvested my eggs, she came up from D.C. to have three of the embryos implanted. Ten days later, I was in court for something and I got a happy voice mail from my sister. I almost burst into tears, but I couldn’t because the defendant kept coming in and out of the courtroom, and I couldn’t have him see me that way.
Initially, when Natalie was born, Ann didn’t feel a connection, but by the time she went home from the hospital after the C-section, she felt that she had this strong bond. I stayed with Ann in D.C. for ten days, and it was a very difficult parting for both of us. She carried this baby for nine months, and there I was, taking this baby away from her. It’s still hard for Ann because sometimes she feels like this child is going to grow up and not know her—but it is turning out differently. Just this past weekend, Ann was here, and we were in the car going out to Long Island for my other sister’s birthday. While we were waiting for Kenny outside Starbucks, Natalie went to put her head on her aunt’s shoulder and said, “Ann, you’re my best friend.” I don’t know how we’re going to eventually tell her that Ann is also her birth mother, but so far, things have turned out beautifully. I have this baby, and she has a wonderful aunt.
I was going to take a six-month maternity leave, but now, three years later, I’m still a full-time mom. I didn’t know how much joy I’d get from her. I don’t regret that I had to go through anything to get her. But with the cancer diagnosis there was so much that was taken away from me—not just part of my body but also confidence in my health. Nobody ever says, “Your cancer is gone,” because even if it looks like they got it, the cancer cells could still be there somewhere and they could reactivate at some point. I’ve still got cancer hanging over my head, so I feel like I can be a little bit selfish and enjoy this time now.