My story is a little unusual. I have had leukemia twice. The first time was in 1984, when I was twenty-two. The second time was almost ten years later.
Not Like Sloan-Kettering
I wasn't treated at Memorial Sloan-Kettering the first time I got sick. I had graduated college and was starting graduate school in a few weeks. I first found out something might be wrong when I started bruising easily. I was going to the beach, so I went to buy a bathing suit. I whipped my clothes off -- and there must have been fifty or sixty black-and-blue marks all over my body. Like they'd appeared from nowhere. I just looked at myself and said, "I think something's wrong with me."
When I saw those bruises, I ran to my friend Julie and said, "I think something's up." Julie said, "It's some kind of vitamin deficiency. I'm sure it's nothing." (Sometimes a vitamin deficiency can cause bruising, but this wasn't one of those times.)
When I went home and my mother took a look at me, we just couldn't handle it. So we called my doctor at the time and he said, "I think you need to go to a hematologist-oncologist." "What the heck is that?" I thought. But I went immediately to see one of the doctors he recommended. There and then he said, "I'm ninety-nine percent sure you have leukemia. You need to go into hospital, because we have to do some tests." I was admitted the next day.
I had been feeling extremely tired. I remember having to sit down a lot, to catch my breath. Which was not like me. My gums had been bleeding beyond belief. My periods were like overflow. I didn't think anything of it at the time. I attributed a lot of it to the very hot summer we had that year. But when I was diagnosed, and the doctor said those were symptoms of leukemia, it all made sense.
That first time I was in the hospital for three solid months. It was not at all like what I would later discover Sloan-Kettering to be. The first hospital provided good care, but they didn't have a cancer center. I was on a floor with everybody you could think of -- heart patients, lupus patients -- but no other leukemia patients. And I had just one doctor. But there was no team. It was just very different.
First Survivorship
They diagnosed me with AML, acute myelocytic leukemia. Back in the 80s, chances of surviving AML were not very good. I had heavy-duty chemotherapy, five days a week, twenty-four hours a day of continuous treatment. I lost weight until I was just a little over a hundred pounds. They rushed me into the ICU because I started having respiratory failure. I was on a respirator for a week, but I made it through.
I think, through that, what helped me most were friends and family. Those connections with people are a key piece to making it through cancer and treatment.
My closest friends are Julie, Nancy, DC, and Brigitte. They are the four girlfriends I grew up with. I've known Julie and Nancy since I was seven, and DC and Brigitte since I was twelve. And we are still the closest of friends -- we talk or e-mail at least twice a day. They're the love of my life, those girls. At the time, we had just graduated college, and everybody lived close to the hospital.
There was this incredible outpouring of support from friends, family, and community for me and my parents. I would have not have made it without that support. I truly feel for people who don't have that connection with other people -- but I'll tell you, if you have just one, that's all you need. One friend sent me a letter, saying "I can't stand going into the hospital, but I want you to know that I'm thinking about you." That meant a lot to me, just that.
After treatment, I went back to my doctor every couple of months for checkups. I moved to New York City, started graduate school, and life started to get back to normal as much as possible. But every time I saw a black-and-blue mark, I would wig, just wig out. My doctor kept saying, "Listen, Helaine. You're going to bump into things sometimes and get a bruise. I understand your fear, but it's okay." When you know what to look for, it can be a little frightening. Then I passed the five-year mark, and my doctor said, "Go to the gym, go do what you do. You're still going to bruise. But that's that."
Not Again
I was studying for a master's in speech pathology and working part time at NYU Law School as a career counselor. One day, in the early spring of 1992, I was with my friend Nancy at the gym. We were having lunch. I looked down, and I had this bruise on my hand. I remember thinking, "Man..." Nancy said, "Helaine. You'll get black-and-blue marks. You probably hit your hand on the bar." But something just didn't look right. I started to have a minor panic attack. My mom had died in 1989, and my dad was away at the time. So Nancy said, "Why don't we go to the hospital? Just to get a checkup."
I didn't want to go all the way out to Long Island. So we decided to go to Sloan-Kettering. Since I wasn't a patient, a nurse suggested I go to a nearby emergency room and get a blood test. They took my blood, and then the doctor came back. He told me my white count was like a thousand. Even though everything else was okay, the minute that white count came back at a thousand, I said... well, I think I lost it. Nancy said, "You're going to be okay." I said, "I don't think so."
I couldn't go home. I was scared to sleep by myself. So Nancy said, "Look. You're going to stay at my house. You're not going to go home." I remember I couldn't take my clothes off because I was petrified. I just couldn't see any more black-and-blue marks.
The next day, I went to see my doctor on Long Island. He said, "Everything's normal but your white count. Maybe you have Epstein-Barr. We're going to do some tests on you." So he tested for Epstein-Barr. It wasn't Epstein-Barr. Then he came back and said, "Okay, come back next week and be tested for mono." It wasn't mono. Finally, he did a bone marrow. And then he came back to me and said, "There are a couple of things we have to talk about."
"Okay," I said. "Lay it on the line."
"I'm not sure what you have," he told me. "But you may have another form of leukemia. And I can't treat you."
"What do you mean, you can't treat me?"
"I'm sick. And you're like a daughter to me. I'm going to send you to the best doctor I know. She works with a team in New York City. Her name is Ellin Berman."
I said, "How am I going to go to someone else?" It was hard on an emotional level because we were so close. Also my only sibling, Jonathan, had moved to Los Angeles and my mother was gone. But my doctor said, "I'm going to call her right now, and I want you to see her tomorrow."
By that point, I had told my father and my friends. All I kept thinking was, "I can't go through this again." But my friends just said, " It's not an issue. You're going to do it. If you're not going to do it for you, you're going to do it for us." So then I started thinking, there are too many people who care about me not to get treatment.
Not As Scary As I Thought
So I went in to Dr. Berman's office at Sloan-Kettering. It was very overwhelming when I first walked in. Dr. Berman and five other people, other doctors, nurses. But I remember there was this artist's poster, a beautiful peacock by Walasse Ting. It's funny how you remember certain things. I sat there thinking, "Wow, they really have nice artwork." This was cheery. My other hospital was well, ugh. But here was this big, beautiful poster -- the colors were so bright. It made a lasting impression. I thought, "All right, this isn't so bad." And I kept looking around at the people, just checking everybody out. It wasn't as scary as I thought, walking into this doctor's office.
So they did all these tests on me, that same day. Dr. Berman came back and said, "You do have leukemia. But the form of leukemia you have is very treatable. We've had a very high cure rate." I hadn't heard "leukemia" and "high cure rate" very often together like that. So I said, "Okay, keep talking. This doesn't sound so bad."
"You have something called APL, acute promyelocytic leukemia." And I said, "Is that like AML?"
"It's a form of AML. But it's a very treatable form. We are looking at two courses of treatment. One is called immunotherapy," which at that point was so brand new, I didn't know what it was. "The second option is a clinical trial we're doing here at the hospital on APL." Dr. Berman explained that doctors at Sloan-Kettering were testing a new drug called ATRA, all-trans retinoic acid, a form of vitamin A taken as a pill. So far, although the response wasn't a hundred percent, patients on the study had been doing remarkably well overall. I said, "So will I have to have chemo?" And she said, "Yes, you'll still have to do chemo, but only for three months." Three months, versus the eight months of hell I went through the first time.
"Will I have to be in the hospital?" "No. You can take the pills at home." So I'm thinking, "This is pretty great." I told NYU, and they could not have been nicer about the whole thing. I decided to start the course with ATRA.
It Won't Be Easy -- But It Will Be Easier
A lot of my friends had moved out of the city by then. But my friend DC was still living in the city at the time. I made her go everywhere with me. Every time I had to go into the hospital I would say, "You have to come with me." And she is not the best in hospitals. But she would come with me all the time.
I had really long hair. The hair loss, since it's the most visible part of cancer, can be very hard. Before I started chemo this time, I just told a friend, "Go. Take these scissors and just cut it. Have a field day. Get it all off me. I don't want to have to deal with it." And so we did. We had a fun time in the hospital cutting all my hair off.
Knowing what to expect can be difficult. But I had made the decision that I was going to tackle this, that I was going to give it 110 percent. Dr. Berman and the team told me, "It's not going to be easy, but it's going to be easier."
At Sloan-Kettering, everybody on your floor has the same thing, even the same type of cancer. I could talk to people who going through the same thing. That was so helpful in my treatment, to be on the same floor with other leukemia patients.
The nursing care was just phenomenal. For the three months I was on chemo, I'd be going back to the Leukemia floor all the time and all the nurses knew me. It made it easier going back.
So I did the ATRA, which was great. I had no side effects. Zero side effects. In September I started chemotherapy. I was still working, and I felt I was doing okay. I had had two rounds of chemo, and my brother was getting married in November. The way the treatment was working, I was hoping I could go to his wedding on Long Island. So I asked Dr. Berman. She was great. She said, "It's okay, you can wait a month and a half. We'll do it right after." I started thinking, "Well, I must not be that sick if she's letting me wait two months." Because she was very cautious with me. So I went to my brother's wedding. Then I went back and did a treatment at the end of November, and then I had one last treatment in January '93.
Now that we were all living in Manhattan, my closest friends would be there for me, morning, day, and night. I don't know how to pay back what my friends have been through with me. There's just no way to say thank you, ever. And they're like, "There's nothing to pay back. You would have done the same for us." Which is true. That's what friendships are about.
They would just make me laugh. They didn't treat me any differently. That's another thing people should realize, you don't want to be treated differently. They'd yell at me. I'd be in the bed, they would say, "You want to go to the bathroom, get off your butt and walk. We're not helping you. You need to do this." They were so good for me, because they enabled me to gain my strength and keep my confidence. Without that, it's easy to get depressed. As every cancer patient can, I got depressed at certain times. But my friends did not treat me any differently at all.
Survivorship (Version 2.0)
The first time I got sick, it wasn't that life-altering for me. I was young and I just wanted to get on with my life. After college, I dated, I went to work, I just wanted to be like a normal kid. But the second time was very different. I was at NYU, and I said, I can't do this any more. This isn't for me. I can't counsel students. I got sick for a reason the second time. Eight years apart, survived both, I had to think of what I wanted to do with my life.
I had a very good social worker named Leslie, who was on the Leukemia team. She was so nice. She was my age, and she volunteered for the Leukemia Society. One day she said, "You know what. I think this would be good for you. When you're ready to get involved. I'm not going to push." I said, "I don't know if I'm ready." I had been thinking about starting a camp for adults with cancer. I was actually looking at property. I knew there were camps for kids, but there didn't seem to anything for somebody in their twenties. I thought, the issues are so different for young women in their twenties than adults in their fifties and kids in their early teens. There was this void, which I still think there is. That's still my dream, to do something like that.
Sloan-Kettering's Post-Treatment Resource Program offers a six-week course for cancer survivors, with their social workers. I took the course, and truly enjoyed it. I started volunteering at the Leukemia Society through Leslie. She got me involved in the young adult group, where I met some incredible folks. Then one day I saw an ad in the Times for a full-time job in the patient education department at the Society's national office in New York. I thought, I'm going to apply for this. This could be kind of cool. And I got the job. They interviewed me, and I told them my history. My boss asked, "Are you going to have a difficult time working here?" And my immediate response was, "Absolutely not. Quite the opposite. I have so much to offer and give back. That's why I'm here."
After I was hired, I sat at my desk the first day, thinking, "This can't be happening." I cannot believe I'm actually doing something that's so meaningful to me. I couldn't ask to be in a better place, at this time in my life. I ended up staying there for four and a half years. I did two marathons, I helped raise money, and just loved it.
I even got to speak at Sloan-Kettering. They had a one-day conference for patients, and my boss said, "Why don't you go do this?" I was like, "Nah." But she said, "No, you'd be amazing." And I did it - I spoke to all those patients. I was the keynote speaker, it was really cool. I also ended up being on an NIH committee, as the leukemia patient representative for the first grant review for psychosocial grants.
Then one day, I was sitting on an FDA committee to approve a drug -- I got nominated through somebody at work again. And all of a sudden, there's Dr. Berman. I blurted out, "Ellin!" "What are you...?" "I'm the patient advocate!" Because they wanted patient advocates on all these committees. It was a great ride. I got involved in a lot of neat stuff at the Leukemia Society and had the opportunity to do many different things to help the community at large. Then, after four and a half years, I began to think maybe it was time to look at other things, maybe move on. Just to see.
Sometimes a Bruise Is Just a Bruise
Now I'm the development director at a charity for children with Down syndrome. I think I needed to get out of the life or death world for a while. Down syndrome is for a life span, so you're working with kids, young adults, and adults. But listen, I still talk to people who get diagnosed. Friends call me and say, "Could you talk to this person?" I still know a number of the doctors that I could make a phone call to.
One thing I've learned, health coverage is crucial. I did not have any health insurance the first time I got sick. I had come off my undergraduate plan in July, and was supposed to start graduate school at the end of August. Now, when someone tells me they don't have health insurance, and they say, "Well, it's only going to be three weeks." I tell them, "You don't understand. It can ruin you. It can absolutely ruin you." We were upper middle class, but it took a toll on the family. My parents would never not help me in any way they could, but that was hard on all of us.
Another key piece is -- and I have only learned this over the years -- you have to be your own advocate. As hard as it is, if you're not happy with something, you need to speak up. And it's okay to speak up. I remember thinking at first, "I can't ask that." But then I learned, "Yeah, I can ask that." You're talking about your body; you're talking about your health.
I won't say it's not in the back of my mind that cancer might come back. Of course it is. But now when I see a black-and-blue mark, it's just a black-and-blue mark to me. I'm over that day-to-day fear, I truly am. It took a very long time.
I still go to Dr. Berman every six months. I can't give that up. It's safe for me. She's so funny, and she's so sweet. She calls me her little poster child. She says, "This is one of my patients. She was one of the people on the study for ATRA." She's incredible, there were only 365 of us on that study. Now it's a standard of treatment for APL.
It made me a much better person, that whole experience of being sick. For one thing, it made me realize how important my friends and family are to day-to-day living. I know there are people I can call at 4 o'clock in the morning and that they'll be there for me in a second. And we celebrate. It's been twelve years now.
Look. I don't wish it on my worst enemy to get what I had, but I'm blessed that I was able to get an incredible doctor to treat me. She and the team at Memorial Sloan-Kettering saved my life. What can you say to that?
Last Updated: Apr. 8, 2004
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