Daily photos by John Godbey|
Bryan and Amy Hill at a Wednesday night supper at Southside Baptist Church. Until a recent conference in Chicago, Amy wondered if anyone else felt the way she does as a leukemia survivor. “Within the first 30 minutes, I met a lady from Wisconsin about my age who had children and leukemia and a stem-cell transplant,” she said. Hill now serves as a mentor for others who have leukemia, and she considers it part of “giving back” to the community that was so helpful to her.
Up Hill battle
Decatur teacher Amy Hill still deals with ‘emotional upheaval’ as a leukemia survivor; Chicago symposium helps her cope
By Patrice Stewart
When you are dealing with serious illness, you need advice from somebody who’s been there.
Amy Hill of Decatur wishes she’d had that when she struggled with chemotherapy and a stem cell transplant during her battle with acute myelogenous leukemia.
The first thing you face, she said, is whether you are going to survive and be there to raise your children.
Then there’s wondering if you will be able to return to your job and the old you.
Later there’s struggling to have the energy to get back to a normal routine and help others in the community who came to your aid.
The constant question that still haunts her is “Will it come back?”
Two weeks ago, Hill, 40, was one of 350 bone marrow and stem cell transplant survivors in Chicago for “Celebrating a Second Chance at Life,” a first-of-its-kind symposium addressing their medical and emotional needs.
She regularly checks Web sites about such transplants, and that’s where she read about the conference for survivors. She participated in a survey before the gathering to help shape the agenda.
“There’s not a lot of data on long-term survivors,” she said. “The doctors and nurses are too busy keeping us alive to worry about the long term. ...
“They wanted to see how people are handling things several years out, especially emotional issues, because this takes a toll.”
Hill, an eighth-grade English teacher at Oak Park Middle School, wrote the workshop sponsor about her concerns.
“The biggest challenge that I have faced, other than just surviving the chemo that comes along with the transplant, has been returning to work.
“I am a schoolteacher, and it has been difficult to have the energy to do all that I do. Unfortunately, my home suffers during the school year.”
“Keeping a positive outlook is necessary, but sometimes not easy,” she said. “There is a great deal of emotional upheaval with all of this, and I just wonder if anyone else feels the way I do.”
She paid her own airfare, and she and husband Bryan decided to make it a three-day family trip and took their 12- and 14-year-old daughters to see the Field Museum, Hancock Observatory and other sights in the Windy City.
At the conference, which included many doctors and nurses as speakers, Hill got answers to her questions about fatigue and emotions.
“I’d never met another person who had exactly the same thing I had,” she said. “But within the first 30 minutes, I met a lady from Wisconsin about my age who had children and leukemia and a stem-cell transplant, and we exchanged e-mails so we could keep in touch.”
About 73 percent of 600 survivors surveyed said emotional and psychological health is a big concern in post-transplant years, with 62 percent citing fatigue, according to the sponsor, Bone Marrow Transplant InfoNet. Hill learned techniques for coping with those issues and also memory problems.
Amy Hill’s family was her strongest support system during her struggle with cancer. Amy, second from left, with daughters Emily and Carrie, and husband Bryan.
Sue Stewart, a bone marrow transplant survivor, founded BMT InfoNet in 1990 in Highland Park, Ill., to serve the transplant community (www.bmtinfonet.org).
“The transplant itself is one of the most difficult medical procedures a person can undergo,” Stewart said. Hill was told that 30 percent don’t live through the transplant.
“It is assumed that if you are alive after your transplant, the procedure was a success, and you can simply get on with your life,” Stewart said. “Unfortunately, that’s not the case.
“Although many can resume a normal lifestyle after the transplant, many have ongoing medical and emotional challenges, and all have to be vigilant about possible complications that can arise many years later.”
Hill feels fortunate to have had the support of her husband and daughters during the last several years of battling leukemia. Many of those at the conference were people without children who struggled with infertility caused by the chemo, she said. Others had lost their jobs because of illness-related issues.
Hill and her family know it takes a lot of faith and the support of friends, co-workers and fellow members of Southside Baptist Church to fight this battle, as well as plenty of family help.
Hill, a Hartselle native with 18 years in the classroom, earned master’s and education specialist degrees and was working on a doctoral program before she was diagnosed. Then she got solid support from the teaching community.
Though she missed a year and a half of school, she never missed a paycheck, thanks to teachers at Oak Park Middle and Walter Jackson Elementary, plus many in Hartselle and elsewhere, who donated enough of their own unused sick leave to replace every day she missed.
Hill now serves as a mentor for others who have leukemia, and she considers it part of “giving back” to the community that was so helpful to her.
The Decatur wife, mother and teacher uses her own experiences to tell other patients things only a survivor can share. She’s talked with three patients in Huntsville so far. She also is speaking at church women’s retreats on “Handling Life’s Difficulties” and “Compassion Matters.”
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