Lessons in leukemia raise awareness

Clara Garcia News-Bulletin Staff Writer; cgarcia@news-bulletin.com

Los Lunas (Editor's note: Valencia County Helps is a monthly feature that tells the stories of the agencies and organizations that make a difference in the lives of local residents. We strive to tell how the group can help you — and how you can become involved and help your neighbors.)

Every five minutes someone is diagnosed with a blood cancer. Every ten minutes someone dies of the disease. Each year, 650 New Mexicans are diagnosed with a blood cancer, and 300 of those diagnosed lose the battle annually.

But two Valencia County women who have been diagnosed with two different types of leukemia are now hoping that by sharing their stories they can educate others about the disease and help find a cure. Education is key, they both said, and they should know — they are both current and former teachers.

Betty Barron and Diana Lara, both of Los Lunas, now live every day to the fullest. They are both very aware that they are very lucky to have survived — lucky to be alive and able to volunteer their time to raise awareness of the disease.

On Saturday, September 15, Barron and Lara will be participating in Light the Night Walk, an annual event sponsored by the Leukemia and Lymphoma Society. The purpose is to honor those who have not survived blood cancer and to celebrate with those of us who have.

The Light the Night Walk will take place in Tiguex Park in Old Town Albuquerque. Registration begins at 6 p.m.

Each fall, teams of friends, families and coworkers raise money for cancer research. Barron, who moved to Los Lunas last year, decided she would volunteer and organize a team of her own. Her team is named "Valencia Country Cares."

In an effort to raise money for her team, Barron has organized a raffle and garnered donations from local businesses. She will be selling tickets, which cost $5 each or three for $10, at Wal-Mart in Los Lunas on Saturday, Sept. 1, and in Belen on Sept. 8.

In November 2005, Barron was in Germany teaching for the Department of Defense Dependents Schools, which she had done for 26 years, when she was diagnosed with blood cancer. It was Thanksgiving weekend when she started feeling a pain on the side of her stomach. She initially thought it was her appendix, but instead, she found out she had gallstones.

It was while she was in the hospital that she learned there was something else wrong — something that she never realized would forever change her life. She was diagnosed with having hairy-cell leukemia.

Hairy cell leukemia is a slow-growing form of chronic lymphocytic leukemia (CLL). This disease is diagnosed in an estimated 500 to 800 persons of the disease in the United States each year. It is called "hairy cell leukemia" because the leukemia lymphocytes have short, thin projections on their surfaces that look like hairs when examined under a microscope.

When Barron first heard the words "hairy cell leukemia" she fell apart. She was in shock. The actual words didn't mean anything to her, only that she had cancer.

"It's not that I was scared of dying, it was the fact that I wasn't going to be able to come home and see my grandbaby," Barron said. "I said OK, tell me what's going to happen. My doctor kept assuring me that if I were going to choose to have leukemia then this was the best to have because this was the most curable."

For the next five days, Barron underwent chemotherapy, but spent the next 24 days in the hospital so her blood could build up.

"I have a really, really strong faith, and I was very much at peace with it all because I was ready to accept anything that happened," she said. "I cried, especially at the beginning, because I didn't know what to expect. I knew if God took me then it was time for me to go.

"They told me there was an 85 percent survival rate," she said. "But being a math teacher, I thought to myself that there's a 15 percent non-survival rate."

Three or four days after walking out of the hospital in January 2006, Barron noticed something wasn't quite right. She was suffering from a severe allergic reaction to the penicillin that she had been given in the hospital. She then spent another week in the hospital. For the next several months, she went through a series of infections, caused by the weakening of my immune system from the chemotherapy.

Several months later, Barron decided to retire from the Department of Defense Dependents Schools. She returned back to the states and moved to New Mexico.

Her doctors told her that there is a chance the leukemia could return, but she's now in remission and living every day to the fullest. She now teaches math at Los Lunas High School in a special computerized program called the challenge program.

"I think everything happens for a reason," Barron says. "God doesn't give us trials that we can't handle, so He'll always be there to see us through whatever He sends."

Sitting at her kitchen table, Diana Lara pulls out several journals filled with notes. As a retired special education teacher at Central elementary in Belen, Lara knows the importance of keeping records.

But these notebooks aren't filled with her student's homework. Every day since the day she was diagnosed with chronic lymphocytic leukemia, Lara has been jotting everything down, from what medications she took to what the doctors told her about her condition.

Lara was diagnosed with the disease in October 2002, but for several years prior, she had continued to feel ill. She had been having chills, fevers, night sweats, swollen lymph nodes, bruising, dizziness, and the list goes on and on.

Her doctors had been treating the symptoms, but Lara's health continued to worsen. It wasn't until she decided to ask for blood tests that she finally found out what was the cause of all her ailments.

"I had gone to a learning disabilities conference in Albuquerque, and that's when my doctor told me over the phone that I had chronic lymphocytic leukemia, which stunned me," she remembered. "I asked him what it meant and he told me that it was blood cancer. He assured me at that time that chronic meant that I could live with it and I could live with it a life time."

In chronic lymphocytic leukemia (CLL), the leukemia cell that starts the disease makes too many lymphocytes that do not function. These cells replace normal cells in the marrow and lymph nodes. They interfere with the work of normal lymphocytes, which weakens the patient's immune response.

Today, Lara is also in remission, but the road to recovery was a long, hard and a trying one. She said when she first heard the news, she had no idea what she was in for. Nobody could.

"I was stunned, I was crying, I was very upset," she said. "I went back into the workshop, and my friend asked me what was wrong. I told her, and we left for about half an hour until I could pull myself together."

For the next three months, Lara was put on a chemotherapy pill by her oncologist. They said it would work, but it didn't. In January 2002, her symptoms returned along with some new ones — nose bleeds, sores on her throat, coughing, more bruising and a severe case of heartburn.

In February of that year, Lara started traditional chemotherapy five days a week, while still teaching. She continued the grueling schedule for months.

"This is where I have to thank my school community and church community," she said. "A person from school or church would take me to my treatments every day. My husband wasn't able to do it because he was working in Socorro."

Not only did Lara have to go through chemotherapy for the next eight or nine months, she also had several blood and platelet transfusions during that time. Again, it didn't help. Even though she was exhausted and overwhelmed, Lara didn't give up hope.

It wasn't until she talked to her brother, David Frohnapple, a doctor of pharmacology and internal medicine, about her condition that she found another option.

"He said my treatment wasn't working, and he suggested I try something else," she said. "He had done an internship with a doctor who works at the National Institute of Health in Bethesda, Maryland, who may be able to help me. Now, we're talking about a stem cell transplant."

Needless to say, Lara got a second opinion from a different oncologist, and she too recommended a stem cell transplant. This doctor also told her that she had advanced atypical CLL, which is equivalent to non-Hodgkins lymphoma and went from chronic to terminal.

On what Lara calls her second birthday, December 22, 2002, she did receive her stem cell transplant, and her brother, who was the closest match, was the donor. At first, she was not real willing to do the transplant, saying that she was afraid to die.

"They didn't give me very good odds," she said. "I was scared. I didn't know what was going to happen."

But there was no option. If she didn't have it done, she would die anyway. Her sister told her that if she went through with it, at least she would have a chance of survival. She said if it weren't for her brother, she wouldn't have made it.

"I was very blessed that he was willing to do it," she said of her brother. "I guess that's what family does for each other. He was my only hope."

Lara remained in the hospital for another month and stayed in Maryland several more weeks until she was able to return to her home in Los Lunas. She said while she was still being treated for different ailments, she returned to work in the fall of 2003.

For the next two years, Lara worked, continued her treatments and fought to return to her normal life. But with everything her body had gone through, it was not meant to be. It was getting to be just too much.

So in May 2005, Lara left the classroom and retired from teaching after 23 years in the profession. She said while she misses the students and her fellow teachers, she said it was time to go. She needed the rest. She needed time to completely heal.

Lara said she couldn't have made it through without the support of her husband, Noe, her brothers, David and Dean, and her sister, Holly and her parents, Howard and Frances.

It's been about five years since her transplant, and because of her weakened immune system, she continues to struggle with her health, having to take about 20 pills a day. Today, Lara is still recovering, but her future is bright. She paints, she travels, she volunteers. She lives.

"Life is precious," Lara said. "Live every day to its fullest. Live today, don't think about yesterday and don't think about tomorrow. Live every moment of every day completely and fully and give thanks to God for every moment He gives you."