CML survivor Erin Zammett Ruddy wants a baby. The trade-off may be her health.
When Erin Zammett received her journalism degree in May 2000, she had already planned her next step: a course that would give her a job-hunting edge in New York City’s competitive publishing world.
By the end of the course, the University of Tennessee grad had been approached by one of the speakers, an editor at Glamour magazine, impressed not only with Zammett’s 3.9 college GPA, but also with the fact that the sassy, 5-foot-9-inch Zammett had been the first woman accepted as an intern by Playboy magazine.
Zammett also looked the part of a Glamour editor. As an athlete she allowed herself only infrequent, age-appropriate overindulging, focusing on building not only an athlete’s body, but one that would someday carry a child.
At the same time that Zammett was becoming an “it girl” on the East Coast, oncologist and researcher Brian Druker, MD, of Oregon Health & Science University Cancer Institute in Portland, was watching seven years of research come to fruition.
Since 1993 Druker had been working on a targeted therapy for cancer—a new approach to cancer treatment that researchers saw as an avenue to make cancer a manageable, chronic disease by shutting down one or more of the mechanisms that tell a cell to divide. Across the country, researchers such as Druker had been exploring myriad ways to interrupt cell division. Many of them reached dead ends after being outwitted by the body’s intricate ability to safeguard cell growth.
Druker’s focus was a compound that would shut down a family of enzymes that prompted growth in a number of cancers, one of which was chronic myeloid leukemia, or CML, a cancer of the bone marrow that causes rapid growth of immature white blood cells. People with CML can live for years without being aware of its presence until the cancer hits high gear, filling the body with leukemia cells. When Druker’s drug showed success, it finally offered an option for CML patients other than a bone marrow transplant, the only treatment that approached a cure for the cancer. Known as the treatment that might kill you before the disease does, bone marrow transplant requires hospitalization and extensive chemotherapy to kill the leukemia cells before the patient is “rescued” with new bone marrow. It is a difficult treatment and leaves the patient sterile.
Druker’s drug would be taken daily in pill form and have few side effects for the patients whose cancer could be controlled by the minimal dosage. As it showed more and more promise, the new drug was moved through clinical trials quickly. By 1998 phase I trials had begun, showing results more remarkable than expected and leading quickly to phase II and phase III trials in order to get the drug to those who had relapsed after bone marrow transplants.
As Druker’s compound moved through phase I and phase II clinical trials, Zammett was firmly ensconced in New York City with a great job, an apartment, and her family only a few train stops away on Long Island.
From an early age Zammett had made decisions with clarity and determination, planning for a future that she envisioned would combine a successful career and a large, loving family like her own.
The key piece fell into place when her college boyfriend, Nick Ruddy, moved to Long Island to be closer to her, where he lived with her parents and worked for her father while finishing his business degree. Weekdays Zammett spent in the whirl of the fashion magazine industry; weekends she enjoyed family and Nick.
In 2001 Druker’s drug, now known as Gleevec (generically, imatinib), was submitted to the U.S. Food and Drug Administration, which “fast-tracked” its approval in fewer than three months.
That same year Zammett, on a fast track of her own, left her annual physical with a line worthy of a screenplay:
“So, I’m healthy, right?” she asked. “Yep,” said her internist. But he had been premature. He called her back the next day with the results of her blood work: 23-year-old Zammett had CML.
In a perfect world Druker and Zammett would never have met. Instead, within weeks of her diagnosis, Zammett traveled to Oregon to explore the new drug called Gleevec.
Today 29-year-old Erin Zammett Ruddy has been on Gleevec for more than five years. The pill is her only physical reminder of the cancer, which is officially in the undetectable range, according to her physician and Druker’s partner, Michael Mauro, MD.
Now a features editor at Glamour, she oversees production of several pages in the front of the magazine as well as features, while looking for interesting stories to cover.
“I get to go out and meet writers and brainstorm ideas for stories,” she says, adding that her topics include a lot of the relationship issues seen in the magazine. In addition, she writes a column about cancer, and has a blog on the Glamour website (www.glamour.com/lifestyle/blogs/editor) to chronicle her own cancer journey for those facing a similar diagnosis. Seldom a day goes by that she doesn’t get e-mails and letters from cancer patients and survivors asking for help or just thanking her for going public with her cancer journey. Her following increased with the publication of her book, My (So-Called) Normal Life, in 2005. Her goal for the book was to show people that life can go on when you have cancer, particularly with a drug like Gleevec.
Some of her admirers met her in person at a recent CURE Patient & Survivor Forum in San Diego. Others stop her on the street in Manhattan and thank her. In one instance, a woman pushing a baby carriage stops Erin by name, explaining that she doesn’t have cancer but a friend does and Erin’s columns have helped her understand and help her friend.
Initially, Erin was surprised that Glamour editor-in-chief Cindi Leive wanted her to make the cancer chronicles a part of her job, but now Erin takes pride in the fact that she and Glamour are offering such a needed voice.
“Glamour has always had excellent health coverage,” Erin says. “In fact, the first thing I did when I was diagnosed was refer to a story we had just done on Gleevec, but we had never done anything like this.”
By this time Erin is accustomed to doing things differently. She and Nick invited her doctor and his wife, Anne, who designed and made Erin’s wedding dress, to their July 2005 wedding, an invitation that she joked in one of her columns was a “Martha Stewart no-no.”
Having preserved her fertility by choosing Gleevec over a bone marrow transplant, Erin says she began wanting a baby soon after the wedding. She tentatively expressed her desire to Nick and then backed off from the word “baby” when she saw Nick’s reaction.
For Erin, pregnancy means that as soon as she learns she is pregnant and for the duration of the pregnancy, she has to stop taking the drug that keeps her alive. And, while around 35 so-called “Gleevec babies” have been born, the oldest is only around 5 and no one knows whether there will be long-term effects for the children born to Gleevec mothers and fathers.
After more than a year of family discussion, angst, and family input, Nick and Erin have been trying to get pregnant. They visited a fertility specialist to be sure everything was working. Now, she explains, in 48 hours she will find out from the doctor if this month she is indeed pregnant.
Which leads to the question: How does someone make such a life decision?
“People forget I am still a normal woman,” she says. “I have extra issues, but I have all the feelings of any woman. And I am so thankful that Gleevec allows me to live a normal life, but with that comes normal dreams and hopes for the future.”
Again, Erin doesn’t walk into anything unprepared. She started her research on Gleevec and pregnancy almost as soon as her cancer was diagnosed, reading every published study and finding the women on Gleevec who had given birth, many of whom have become friends. “They call and say, ‘Are you pregnant yet?’ and I say, ‘No, are you?’ ”
Erin and Nick considered other approaches to parenthood. Surrogacy wasn’t the best option because in New York state, the surrogate can decide to keep the baby. Erin’s younger sister, Meghan, offered to carry the baby for them, an imposition Erin was unwilling to make on her sister’s young life. Nick and Erin anticipated that adoption agencies would be reluctant to place a baby with a person who has a chronic, deadly disease.
But mostly, Erin says, she wants to have a baby the old-fashioned way.
“I have done lots of research and am fine with the decision, and then I start thinking about looking at it from the outside,” she says. “I am going off the drug that is keeping me alive. People must think I am nuts.”
In one of her recent Glamour columns, Erin wrote of her desire to have a baby, addressing an issue known to many young cancer patients. She received both positive and negative feedback, including one letter where the writer asked, “How selfish can you be?”
When Nick Ruddy talks about his wife, it’s clear that he adores her. By the time they married, Erin and Nick had already faced the possibility of death, which, for Nick, has enhanced those traits he finds most remarkable about Erin. When he talks about her, he says things such as “beyond compassionate” and “motivated” in anything she tries to do. “You can count on her,” he says, “in any situation.” He is proud she has taken her cancer experience public and supports her work with the Leukemia & Lymphoma Society, where she sits on the board of trustees of the New York City chapter and organizes a number of events that have raised tens of thousands of dollars for the cause.
And, he says, she is the most important thing in his life. The cancer, he adds, has calmed her and matured him. But he wasn’t prepared when she started talking about a baby shortly after they married.
“I saw it as her taking a chance with her life,” Nick says. “And that meant taking a chance with my life, because she is the most important part of my life.”
Nick also knew how determined Erin could be. He agreed to go with her to Portland for her checkup last spring to ask some hard questions about pregnancy.
Mauro told them what science knows about the relatively new drug and those who had gotten pregnant — intentionally and accidentally — while taking it. In one study of 20 fathers and mothers on Gleevec, there were two minor birth defects, both common in the children of women not on Gleevec. He also reassured the couple that Erin would be monitored closely and that there were treatment options should she relapse during the pregnancy.
“One study talked about a woman who relapsed having to do leukopheresis, where they skim the cancer cells off the top of your blood. But, unlike me, she got pregnant before she was in remission,” Erin says.
Nick has always wanted children, and by the end of the visit in Portland he felt she would be watched well. But he still had some doubts.
The couple returned to New York with Erin sensing that Nick would never feel at ease about her stopping Gleevec. Then, as often happens, life took a turn: Nick’s only sibling died of a drug overdose.
A week after they returned from his sister’s funeral, Nick says they both talked about life’s brevity.
“I got home from that whole ordeal with my family,” he says, “and decided it wasn’t worth delaying our happiness just because I thought maybe if I don’t take this chance everything will be OK—because that’s not true.”
Erin didn’t want Nick to feel any pressure from her. She kept asking him, “Are you sure? Are you sure??”
She discontinued birth control in September 2006. But there was still one emotional hurdle to overcome.
Erin can’t say for sure how many of her relatives live within a 50-mile radius of the family home on Long Island. John Zammett, her father, can document eight generations back to the Revolutionary War in the neighboring hamlet of Glen Cove. All his siblings still live within minutes of each other. Erin’s mother has two siblings close by, resulting in aunts, uncles, and cousins who constantly drop in.
The Zammett sisters, a striking trio of redheads, grew up riding bikes, hanging out on the shore, and taking dance lessons from Grandma Del, their mother’s mother and a former Radio City Rockette. Not surprisingly, in this large Catholic family, which Erin describes as “ridiculously close,” life revolves around family, and everyone knows what everyone else is up to.
Recalling her first cancer appointment, Erin says her mother asked the doctor then if she could still have children. “It’s just very important,” Erin says.
John and Cindy Zammett’s sprawling home in Huntington is still the hub for the three sisters, their families and friends. John points out the fireplace, explaining how he and oldest daughter Melissa built it when she was just a child. With the birth of each daughter, John added something else to the house. The girls spent time with their father building things, as well as skeet shooting and fishing from the family boat. There are no secrets here, and Erin’s desire to get pregnant has been the topic of discussion for months.
Melissa and her husband, Ysrael, arrive with 3-year-old Andrew, clearly the center of attention in the Zammett family as everyone competes for his time. Erin says it was being around Andrew that made her understand how much she wanted a child.
In a troubling irony for the family, Melissa and Erin have done a cancer tango for the last five years. Erin’s cancer was diagnosed shortly before Melissa’s wedding—meaning that as family arrived for the festivities, cousins and their children took a detour to Memorial Sloan-Kettering Cancer Center, where Erin was seeing a doctor. There, young and old had blood drawn to see whether they would be a bone marrow match for Erin should she choose a transplant instead of Gleevec. Ultimately, it would be her sister Meghan who proved to be the perfect match.
A little more than a year later, Melissa, eight months pregnant with Andrew, was diagnosed with stage 2 Hodgkin’s disease, another cancer of the blood. Her end-of-treatment celebration fell on the second anniversary of Erin’s diagnosis.
Less than a year after that—and only two months after Nick and Erin announced their engagement—Melissa learned her cancer was back and she would need an autologous stem cell transplant, which uses the patient’s own stem cells. Erin put wedding plans on hold to be there for Melissa, who began the process of storing embryos before the transplant.
Melissa, who became pregnant and had two miscarriages after the bone marrow transplant, is now trying to have another child with the stored embryos, one of which will be implanted on the day Erin finds out whether she is pregnant.
Erin says her desire to be a mother can’t compare to that of Melissa, who initially refused one drug that would render her sterile. It took all the family and physician pressure to persuade her to allow them to give her the drug.
“Erin was younger than I was when she was diagnosed, and babies weren’t her first thought,” Melissa says. “It was all I thought about during my treatment, after treatment, and now.”
For Meghan, the youngest of the three and Erin’s bone marrow match, watching her sisters deal with cancer has been agonizing. As the last sister, would she too get cancer? Meghan, who calls them “the cancer family,” lost 30 pounds and began a program of healthy living when she learned she would be Erin’s donor should she fail Gleevec. “It’s like I am living for two,” she says. While she luckily hasn’t joined the cancer dance with her sisters, she had someone stop dating her when he learned of the family’s cancer history.
Understandably, Meghan is also concerned about Erin carrying a child. “I always thought Erin would adopt; I couldn’t imagine her going off her medicine. It’s not that I disagree really, but it’s going to be nine months of horror,” she says.
For John and Cindy Zammett, these five years have been difficult. John, who owns his own data storage company and whose role in the family is that of the jovial handyman, built much of the home, adding on with his daughters’ help throughout their childhoods.
He says he doesn’t worry about the girls. Eyebrows raised, Cindy glances sideways with a private message he clearly gets, chiming in that it’s true he doesn’t show strong emotion on the outside; he just starts a project or dives into work. He nods. As the family moved into treatment mode yet again with Melissa’s relapse, John gutted a bedroom and began redoing it.
Cindy, on the other hand, says her faith has been instrumental to her coping, as has support from her family and coworkers in her job in the social work department at a local hospital. The couple, whose devotion to family has extended to acting as substitute parents to an assortment of nieces and nephews, can handle just about anything.
They agree that while they can give advice, ultimately their grown children will make their own decisions—and they will support them. Still, Erin’s mother is torn. Part of her wishes Erin would use a surrogate, but she wants her daughter to have the experience of giving birth. Erin knows her father is anguished by her decision, but he won’t say.
Today, Erin has her second appointment in a week with a fertility specialist. Last week she and Nick timed intercourse with her cycle to try to get pregnant; the next morning, she had a post-coital test to determine whether the sperm were alive and doing what sperm are supposed to do. Having “passed” that test, she has gone in today to have her hormone levels checked to determine whether they have stayed elevated, a good sign for pregnancy. In six hours she will know.
Over breakfast Erin speculates about the rest of the day. She is calm and at the same time a bit frantic. “What if I am?” “I’m sure I’m not.”
If the test comes back positive she will be six days pregnant and will stop the Gleevec immediately, hoping the drug did not damage her eggs and that its short half-life will not damage the fetus.
“Who knows if in 20 years these children of Gleevec will develop any issues? Is there any way of knowing?” she asks before answering her own question by affirming that she will worry. “I am going to be a wreck, I am sure. Really, part of me wonders what I have gotten myself into.”
As does Nick, whose concern lies in part with a very public pregnancy in print and online. He would like to see this part of their life remain private for as long as possible but knows Erin’s commitment to helping readers understand the cancer journey. Erin, too, has not decided how much of the pregnancy should be shared; they will need their own private space to worry and wonder.
“I love being available; I love that we do that at Glamour. We read all of the readers’ mail and we respond to every letter, and personally, I want to do that. These are people who spill out their guts to me, telling me about their diagnosis, or their sister’s diagnosis.”
Throughout the day Erin keeps asserting that she doesn’t think she is pregnant and begins talking about other options she and Nick might discuss, including adopting from abroad.
At 3 that afternoon she gets the news: Her hormone level is elevated. Erin is pregnant.
When she arrives home, Nick stands and moves toward her and they embrace—for a long time. Erin looks at the bottle of pills on the table that for 10 months will no longer be a part of her life.
Erin and Nick decide to wait until Christmas to tell the family, which means a week of keeping the news to themselves. Erin says it is easier for her than Nick, who takes every opportunity to tell strangers she is pregnant. When the time comes to make the formal family announcement, it is at breakfast with the whole clan on Dec. 23.
“I just blurted it out,” she says. Everyone is excited, and they can’t believe that Erin was able to keep the secret for a whole week. Then the Zammett family jumps into action: Cindy breaks out the knitting, while John begins looking for houses that he could redo for Nick and Erin, who tell the family that, yes, they are planning a move to Long Island sometime after the baby is born.
Melissa soon announces her pregnancy from the implanted embryo. But she and Erin have only a few weeks to celebrate pregnancy together before Melissa miscarries. She is now, Erin says, taking a “baby break” while she gets in shape mentally and physically to try to get pregnant again this summer. In the meantime, Melissa and Meghan are vying for the job of godmother to their niece or nephew, due Sept. 1.
Erin and Nick try to go on as usual, knowing that anything can happen to any pregnancy in the early months. Erin’s pregnancy tests show all is well with the baby—and her own monthly blood work comes back negative for CML.
The pregnancy doesn’t seem real, Erin says, until she finally begins telling friends and coworkers when she hits the 12-week mark. It is also a milestone for the couple to begin planning for the next stage of their lives—not as cancer patient and husband, but as parents.
The cancer, Erin says, stays mostly at the back of her mind until the monthly blood test. Only then does it pop to the front of her consciousness until she gets the results. Her pregnancy announcement on the Glamour blog has brought only congratulations and encouragement, she says.
“Everyone says, ‘What about the cancer? Do you think about it nonstop?’ I still worry, but everything is different. Now it’s all about this life growing inside of me.”
Editor’s note: Erin Zammett Ruddy gave birth to Alexander James Ruddy on September 2, 2007.