By Diana Price
When Pia Awal went to the emergency room in June 2002 after suffering from a fever that antibiotics couldn’t wipe out and bone pain that was getting increasingly worse, the last thing she expected to hear was a cancer diagnosis. And when the doctors delivered the news that her symptoms were the result of acute myelogenous leukemia (AML), the 27-year-old’s world shifted.
She didn’t leave the hospital that night, and she stayed for a month as doctors immediately began a course of treatment that would include intense chemotherapy designed to wipe out and then rebuild her immune system. Memories of the side effects of that high-dose treatment still make her shudder. “I was extremely sick from the get-go. The chemotherapy made me sick within three hours. The antinausea drug they were using was totally ineffective. It was pretty horrific. I lost about 20 pounds.”
After that in-patient treatment, Pia was sent home to recover for a month before undergoing another four rounds of chemotherapy to sustain the remission begun by the initial treatment.
It would be an understatement to say that the physical effects of the treatment were a lot to bear. And in Pia’s story the added dimension is that of a young woman, not yet 30, who was suddenly forced to reevaluate all of life’s big questions unexpectedly and at once—to reprioritize and to ask those who loved her to do the same.
At that point Pia had been dating her boyfriend, Tim, for 10 months, and her diagnosis would test all the boundaries in the new relationship. Passionate about her job as a second-grade teacher, Pia had to think hard about what it would mean, in light of her now-compromised immune system, to be exposed to all of the germs in a classroom environment. And having recently experienced the breakup of her parents’ marriage—they separated a few months before her diagnosis—she would need to discover where she would find the support and the strength she would need to get through treatment.
“[The whole experience] made me really introspect a lot about life,” Pia says, “and about how, up to that point, I had really high standards about myself and my job and my life; and then, this is such a huge way of getting a reality check. So I was pretty strong in terms of just [saying], Okay, this is what I have to do, and I’m just going to get through it.” Ultimately, she says, she got through by realizing that the source of the strength she needed existed within herself and that she would triumph through this process by relying on her own intuition and insight—and by realizing that she was her own person and that she could carry herself through.
Pia’s determination paid off. After suffering the physical side effects of the grueling chemotherapy, she was cancer-free following the treatment. She went back to work and felt the joy of seeing her relationship with Tim continue to grow, when they became engaged in December 2003. Though her diagnosis had tested their relationship, Tim’s support and love had been invaluable, and the couple emerged from the ordeal bound by a trial that many couples their age don’t have to face until many years down the road—if ever. Life was on track.
The Future Put on Hold
And then it wasn’t. A routine bone marrow biopsy in June 2003 revealed that the AML had returned. “You basically know when you get that kind of news, even before you hear the doctor say it,” Pia says. “It was a nerve-wracking hour [while they confirmed the results]. I’m thinking, Am I going to have to go through that torturous month again? Am I going to lose my hair again? I had been growing my hair for our wedding—and we had an engagement party scheduled a month away. All these questions about the future were racing through my head.”
That was a Thursday, and Pia went into the hospital the following Tuesday to begin the same regimen of chemotherapy she had endured once before. The twist this time was that the chemo would be followed by a stem cell transplant. There had been no match in the registry in 2002, which is why she had proceeded with additional chemotherapy in lieu of a transplant. Doctors had told her then that only 30 percent of patients stay in remission without a transplant. “I was so sure I was going to be in that 30 percent,” Pia says.
Now that it was clear a stem cell donor would be needed, Tim spearheaded the effort to launch www.matchpia.org, a Web site and media campaign dedicated to finding Pia a donor. Because Pia is South Asian, the donor also needed to be of South Asian decent (Indian/Pakistani/Bangladeshi). In October they got the good news that a donor had been found in England, and Pia and Tim made plans to move to Seattle so that Pia could undergo the transplant at the Fred Hutchinson Cancer Research Center. On November 24, 2004, Pia underwent a stem cell transplant, and then the waiting game to see if her body would accept or reject the transplant began.
In retrospect, Pia says, she wishes that someone had warned her about how difficult that period would be. After the initial 100 days in Seattle, the couple moved back to New Jersey, and Pia remembers that she felt very unsettled. “Healthcare practitioners often focus so much on the time when you’re there under their care—the first 100 days after the transplant—but I think it was the next 100 days that were really challenging because I was feeling good—my hair was starting to come back—but I couldn’t go back to work yet. I was still on certain medications; there was still this fear about if I was going to get sick or was going to get graft-versus-host disease. I felt very much in limbo—like I didn’t belong anywhere.”
Pia’s sense of isolation, heightened during the post-transplant period, was one of the most difficult aspects of her experience. As a young woman, she felt very alone during much of her journey; and many of the issues she was forced to manage—including the effects of her treatment on her fertility—were tough to cope with on her own.
Once she was able to get back to Fred Hutchinson for her one-year checkup and get that all-clear, she says, she felt better but “antsy.” She wanted to move forward with her life, get working again, and put at least this part of the experience behind her. There was a wedding to plan, a job to think about—a life to live.
Pia and Tim were married in July 2005 in New York City, and they were both happy to focus their energy on their continued work with matchpia.org, which, after Pia’s successful match, they had realized could grow into a wonderful resource for other South Asians seeking donors. Together they also founded the South Asian Marrow Foundation to help patients pay the expenses related to finding a match, and they both feel extremely lucky to be able to give something back from the experience. “Tim and I feel very honored to be in this position to help other people—to be a shoulder to cry on or however we might help them.”
In addition to her work for the foundation and matchpia.org, Pia has recently returned to teaching. She had struggled with the decision, weighing the risks of exposing herself to the germs in a school setting. “I went through a whole search process,” she says, “of, If I were to do something else, what would it be, and would it be fulfilling? I thought, I have to teach and be with children in a school. It’s the one thing I’m so passionate about and that I have worked toward throughout my education. And I kind of came to terms with it: kids have germs, but so do offices.” Ultimately, Pia found a solution that allows her to fulfill her passion and yet keeps her in a slightly more controlled situation: a part time job in a private elementary school.
Now back at work and surrounded by kids and families, Pia is facing some new challenges. As she meets new people and shares her story, she struggles to answer questions about when she might start a family of her own. Her multiple rounds of chemotherapy made her infertile, and she wishes that more people were aware of the potential effects of chemotherapy on fertility and that “there was an easy way to tell people, ‘Don’t look at me and ask me when I’m going to have babies, because I can’t.’”
Pia continues to feel a certain sense of isolation as a young woman managing the issues of a survivor, and she wishes that there were more young women to talk to about her situation. But as she reflects on her experience, it’s clear that, after more than four years of waiting and watching, Pia is happy to see her life moving forward again. She’s also very clear about the fact that her experience with cancer is not one she would trade: “The experience has been life-altering. People say to me, ‘Oh, I’m so sorry,’ and I say, ‘No, don’t be sorry—think of all the amazing things I learned in my twenties.’” And if her work with matchpia.org and the South Asian Marrow Foundation is any indication of what this young survivor will do with her experience, this is just the beginning of the story.