Survivors of disease defeat the odds

Many people, if given the chance to choreograph their death, would probably envision going gently into that good night by drifting off peacefully in their sleep, with no cares, regrets or pain, after having lived for several decades, even a century or so.

That option fades away for those with diseases and conditions doctors have given them little or no chance of surviving: Stage 4 ovarian cancer, tuberculosis, congenital diaphragmatic hernia, an omphalocele, stage 4 leiomyosarcoma.

Newsday asked readers given these and other diagnoses to share their tales of long-term survival, which doctors and surgeons didn't think possible for most of them.

"I was told I had three months to live," wrote Janet Shavel, of Seaford, diagnosed in 2008 with stage 4 leiomyosarcoma, or soft-tissue cancer. She had 22 tumors, including one on her uterus that was the size of a basketball. "I was in shock . . . my sons, my mother, we felt like someone just stopped the merry-go-round of life and I was told to get off."

But she survived, as did Ali Bie, who was born in 1992 with her abdominal organs outside her body. An omphalocele meant she had to have surgery when she was just two days old to put her intestines and other organs back inside her body. Bie weighed less than 3 pounds at birth, and, like up to 40 percent of children with the condition, she had other birth defects -- a large hole in her heart, which required surgery once she reached 5 pounds.

In the two-part series "Living Proof," Newsday profiles 14 Long Islanders, "walking miracles" who faced down death, fought for their lives and won.

Brian Appel, 24

Diagnosis: Stage 4 Burkitt's lymphoma

Prognosis: 20 percent chance of survival

Outcome: 16-year survivor

In between working two jobs, playing roller hockey and trying to fit in some workout time to de-stress, self-proclaimed gym rat Appel may have time to chat if you catch him at just the right moment.

The Massapequa Park resident had so much experience with medical settings as a youngster it was almost inevitable he settled on a career in medicine. He decided to be an X-ray technologist when he realized how long it would take to become a doctor.

His approach to life? "I set my mind on a goal and I try my hardest," he said.

That determination helped Appel get through his diagnosis at age 8 of stage 4 Burkitt's lymphoma, a cancer of the lymphatic system. Doctors told his parents he had a 20 percent chance of surviving and, if he lived, probably wouldn't walk again. But Appel defied that prognosis.

Burkitt's is an uncommon type of fast-growing non-Hodgkin's lymphoma. What started with a tingling lip that kept going numb, then a sore back, turned into soft-tissue masses all over his body and tumors on his spine and sinus cavities. Appel spent six months at Schneider Children's Hospital, now known as Cohen Children's Medical Center, in New Hyde Park, where he underwent radiation, chemotherapy and 26 blood transfusions. "And more MRI and CT scans than you can imagine," he said.

"My parents were upfront with me and I appreciate that 10 times over," he said of his mom and dad, Vicki and Bill Appel. "Being honest with children is the No. 1 thing. Kids handle things better than adults. Parents are the ones who instill fear in their kids. Don't dwell on it and freak out -- deal with it."

Appel has some pros and cons based on his experiences.

When people complain to him, "Sometimes I don't know if I'm sympathetic enough," he said. But that's balanced by the perspective they get when he shares his story with them. "I have an awesome survivor story," he said. "Their whole attitude changes."

Still, the illness has left its mark. "I have learning problems as a result of the chemo," Appel said, referring to his short-term memory issues as "chemo brain." It's a term used by cancer survivors to acknowledge problems with concentration and memory resulting from chemotherapy. "There are organizational things in my brain; I need time to think about stuff."

But his determination again served him well: In 2010, Appel was valedictorian of his class at the Robert J. Hochstim School of Radiography at South Nassau Communities Hospital in Oceanside.

Appel gets sick easily and is allergic to a lot of things. He said his cardiologist would prefer he do aerobic exercise, and he does some, but Appel likes to lift weights.

"I told them I'd rather have my heart explode doing something that makes me happy. I feel better when I leave."

Erin Zammett Ruddy, 34

Diagnosis: Chronic myelogenous leukemia

Prognosis: Four to 7 years

Outcome: 11-year survivor

Ruddy has a decision to make that she couldn't even have imagined 10 years ago, when she was 23 and diagnosed with chronic myelogenous leukemia, or CML, a cancer of the white blood cells.

That's whether she and her husband, Nick, should have a third child to join Alex, 5, and Nora, 3. After much research into the science behind pregnancy after her form of leukemia, Ruddy, of Centerport, stopped taking Gleevec, her daily cancer medication, twice during her previous pregnancies with no ill effects. Her doctor tells her all signs are good that she would be fine a third time, she said. The considerations now are the same ones other young couples face: Is there enough time, money and energy to deal with a third baby?

"And that's a wonderful position to be in," Ruddy said. "Having kids is the biggest emblem of my survivorship."

The cancer was discovered during a routine blood test, and she and her then co-workers at Glamour magazine got her involved in a new clinical drug trial the magazine had published a story about. Now, she said, that drug is a front-line treatment.

"It's easy for me to gloss over how intense those first few years were," Ruddy said. "Having cancer is a big deal. When I talk with people I try to give them hope but say, 'You're allowed to be depressed for a while because you have cancer.' "

While Ruddy's cancer was under control after 18 months of treatment, she and her family faced another scare when her older sister, Melissa Gonzalez, then 27 and seven months' pregnant, was diagnosed with Hodgkin lymphoma in April 2003. Today, after chemo and an autologous stem cell transplant using her own bone marrow, Gonzalez's cancer is also in remission. She and her husband, Ysrael, have three children -- Andrew, 9, Gregory, 4, and Sofia, 18 months.

Ruddy is a freelance writer who blogged about her experience with cancer for Glamour and now blogs for Parenting magazine. She is on track to celebrate 11 years post-diagnosis in November. In addition, she is on the board of the New York City chapter of The Leukemia & Lymphoma Society, which helps fund blood cancer research. In May, she was named the chapter's Woman of the Year for the work she and her sister did to raise $178,000 in 10 weeks.

As more people survive cancer diagnoses, learning to live with cancer is something people will have to work at, Ruddy said.

"I'll never be cured, probably, and I think some people have a hard time with that," she said. "But I'm lucky; I can take a pill each morning and get on with my life."

Cancer remains a huge part of her life, with her fundraising and speaking engagements to spread information and hope, she said, "but it's on my terms. I felt like I needed to pay back the universe in some way. That's what drives me so much."

Ali Bie, 20

Diagnosis: Omphalocele and hole in heart (atrioventricular canal defect)

Prognosis: Loss of speech and mobility; permanent feeding tube

Outcome: 20-year survivor

Bie is as busy as any other college student. She's studying music therapy at SUNY New Paltz, likes being on her own at school and is preparing to study abroad for a semester in Prague this winter.

Bie, of Commack, isn't your average college student, though. She was born in 1992 with an omphalocele (pronounced uhm-fa-lo-seal), a birth defect that's a type of hernia. It caused her internal organs to be outside her belly button, and she had her first surgery to put the organs back into her abdominal cavity when she was just 2 days old.

A week later doctors discovered Bie also had a hole in her heart, an atrioventricular canal defect. That hole between chambers let oxygenated blood mix with unoxygenated blood, resulting in an enlarged heart because it had to work extra hard. But before surgeons could repair the hole, Bie -- born prematurely and weighing less than 3 pounds -- needed to reach 5 pounds. Omphaloceles accompany another birth defect up to 40 percent of the time.

Her prognosis was rocky. Doctors told Bie's parents she wouldn't be able to walk because she couldn't crawl, that she wouldn't be able to speak because her diaphragm, the sheet of muscle that separates the lungs from the abdomen, couldn't work properly, and that she would always need a feeding tube.

Bie didn't get the memo.

With occupational, speech and any other therapy her parents, Eileen and Gary, thought would help, she went about the business of growing stronger.

"I had my stomach feeding tube removed when I was 21/2 years old," she said, "and at 5

I went for DIAL testing and got a perfect score."

DIAL, or Developmental Indicators for the Assessment of Learning, refers to an early childhood screening assessment on motor, language, concepts, plus self-help and social development skills.

To the consternation of her cardiologist, she even joined her best friend on the track team at Commack High School her last two years there.

"It's not like I was amazing at it, but it was a lot of fun," said Bie, a junior at New Paltz. "I could run three miles by the end of the first season."

Bie doesn't have a belly button, which she said has prompted some weird comments from schoolmates. Otherwise, Bie doesn't share her story readily, unless it helps. "I'm pretty private about it; it's no one's concern," she said. "But if a young mother sees my story and has hope from it for her sick baby . . . well, that's why I'm sharing."

Her experiences have influenced her career choice -- musical therapy.

"I think I'm a lot more understanding because I've been through quite a bit," Bie said. "I'm a lot more eager to help people. That's why I'm doing what I'm doing."

Debbie Blick, 54

Diagnosis: Breast cancer

Prognosis: High risk of recurring breast or ovarian cancer

Outcome: 15-year survivor

One of the first things you learn when speaking with Blick is that she's a survivor. "I'm still standing," she said. "Cancer is not the essence of me, although it's a big part of me."

The Lynbrook resident was diagnosed with breast cancer when she was 39. She had just moved to Long Island from New Jersey, had a new job in advertising sales, bought a house, was adjusting to becoming a stepparent and was preparing to get married.

Alarm bells rang. Her mother had been diagnosed with breast cancer in 1974, and it had recurred in 1987; a maternal aunt had died of breast cancer in 1977 and another maternal aunt had died from ovarian cancer in 1981. Then Blick's cousin, Patti, learned she had breast cancer a year after Blick was diagnosed.

Blick learned about the BRCA1 genetic mutation while undergoing chemo shortly after her wedding and agreed to be part of a clinical trial at Memorial Sloan-Kettering's Cancer Center in Manhattan. Her test came back positive, which indicates a genetic predisposition to developing breast and ovarian cancer. It's seen more often in Eastern European Jews, known as Ashkenazi Jews, her family's background. Blick decided to have her breasts, ovaries and fallopian tubes prophylactically removed after learning from a medical journal article that, for women with her diagnosis, there's a 90 percent reduction of risk for those who undergo prophylactic surgery as opposed to a 50 percent reduction of risk for those who undergo "close surveillance," which includes monthly self exams, yearly mammograms and semiannual clinical breast exams.

"I thought, 'I have to do this to save my life. I want to live -- our life is just starting,' " said Blick, who had gotten married in 1998 and underwent chemotherapy shortly after.

Blick also chose reconstructive surgery and had silicone breast implants. About a month ago she noticed a red rash on her chest that was spreading and discovered it was a staph infection around her implants, which doctors treated with high doses of antibiotics. Blick is scheduled to have surgery at Sloan-Kettering in December to remove the implants to clear the infection and have a procedure where doctors take tissue and fat from the belly to make breasts.

"I'm pulling all my courage together to get through this, but I'm excited, too," she said. "I'll get my body back, so to speak."

Blick encourages people to learn their family history and pay attention to their lifestyle. Her cousin lost her battle with breast cancer in 2005. Blick advises against going overboard on the Internet looking for information. "That will drive you crazy," she said. "Use scientifically and medically sound information."

She credits her successful journey to her husband, Steve, 58, her medical team, family and friends.

"Surround yourself with good people," she said. "Reach out to them and say you need help. Let them know you can't do it alone."

Tricia Shannon, 61

Diagnosis: Diabetes

Prognosis: Death by 16

Outcome: 56-year survivor

Shannon was diagnosed with diabetes in 1955, when she was 5. Back then, there was still much to learn about treating diabetes and maintaining correct blood sugar levels.

A specialist physician she still refers to as the "bad doctor" told her mother the reason for Shannon's excessive thirst was diabetes and said she should enjoy her daughter while she could because Shannon wouldn't live to 16.

Shannon, who has lived in Huntington for three years after 30 years spent in Syosset, lived to 16 and beyond. She credits her mother, Helen, 85, of Lynbrook, for persevering until finding a doctor they could work with and then learning as much as she could about diabetes treatments to help her daughter manage the disease.

They found the late Dr. Francis Martin, then a pediatrician at Mercy Medical Center in Rockville Centre, who was her physician until she turned 18, and later was her children's pediatrician.

"He was so wonderful and comforting to me and my mother," Shannon said. "He said, 'You'll just have to do a couple of things, but you'll be OK.' "

Shannon's mother learned how to give injections and taught her daughter how to test for sugar in her urine three times a day by putting a pill in a sample. If it didn't turn blue, Shannon said, her mother told her to run around the block a few times and check again, since exercise burns sugar, just like insulin does.

"She didn't cut me any slack," Shannon said. "Some people let being sick define them. My mother just quietly made me strong."

Shannon has seen diabetes treatments go from glass syringes that needed to be boiled to sterilize them before each use to wearing what she refers to as a pod, an insulin patch pump that delivers doses of insulin as needed.

"I love the pod," she said. "I feel so much better because I don't have such highs and lows. Just press a button and it fixes it."

She credits her success to her support system, starting with her mother and family, and then her husband, Ron Geraci, 61, and her children, Billy, 35, and Danny, 33. "My kids grew up thinking nothing of syringes all over the house," she said. "And they would know when I needed insulin. Sometimes they would say, pretty carefully, 'Mommy, is your sugar OK?' And I would snap that it was, but it wasn't. When your sugar is low you're a different person."

She said she has survived because she has worked hard to stay healthy. Exercise is a part of her life, and she pays close attention to what she eats.

"Some people don't want to give up ice cream, and I don't get that," Shannon said. "This is just how it is."

Her doctor tells her that "my other parts are healthy," she said, "so if one part is broke, that's not too bad."

Genie Scharf, 70

Diagnosis: Stage 4 ovarian cancer

Prognosis: 3 percent survival rate exceeding 5 years

Outcome: 8-year survivor

Scharf was ready to travel and enjoy her grandchildren when she retired in 2002 as a special-education teaching assistant in the West Babylon school district. Instead, she had an aortic valve replacement the next year and in 2004 was diagnosed with stage 4 ovarian cancer.

So far she's beaten the odds of what doctors told her was a 3 percent survival rate for living more than five years with a stage 4 diagnosis. Cancers are staged according to how much the disease has progressed when it is discovered, and stage 4 is considered the most advanced.

"I don't know why I'm here, but I feel like I should do something because I am," said Scharf, of West Islip. "Find a cure for this . . . disease, for all the cancers."

When she was diagnosed, Scharf had chemotherapy to reduce her cancer antigen levels, and then had surgery in 2005 to remove her reproductive organs. She made the five-year all-clear window, but at a checkup doctors found spots on two lymph nodes, so she had surgery last August to remove them. A CT scan this past June gave her an all-clear, she said, but she must return for scans twice a year and blood tests every three months.

The news of the spots made her realize she can take nothing for granted.

"That really shakes you up because you know it can come back again," she said. Still, Scharf remains thankful for a second chance at life.

"I've been able to see all six grandchildren start school, and there was a time I wasn't sure I'd be around for the oldest one's fifth-grade graduation," she said.

During chemotherapy, Scharf developed diabetes and high blood pressure and lost weight and her hair.

"But the weight came back, just like the hair," she said.

She's not sure whether the chemo triggered the diabetes, since a brother also has diabetes, but wondering about it is like wondering why she got cancer with no family history, she said.

"That's just life in general," Scharf said. "It's like wondering why some people were in the World Trade Center that day."

Her advice is to live each day fully and try not to put anything off for too long. And don't avoid going to the doctor. If you get bad news, she said, just keep putting one foot in front of the other.

"You have no choice. Unless you're going to stay in bed with a blanket over you for the rest of your life."

She and her husband, Jack, 71, recently vacationed in the Bahamas with their children and grandchildren, a family treat the couple had saved for since they retired, and Scharf experienced a first. It took her a bit to work up to the moment, but she said she'd go for a repeat.

"I'd like to do that again, kiss a dolphin."

Sandy Psomas, 63

Diagnosis: Brainstem glioma

Prognosis: 3 months to live

Outcome: 28-year survivor

Each night, Psomas thanks God. He's outlived a long-ago cancer diagnosis by nearly three decades.

"Each day is a free day," he said.

Psomas was diagnosed at age 35 with a brainstem glioma, a tumor that starts in brain or spinal cord tissue and spreads. It's a fast-moving cancer that frequently strikes young people. Before the diagnosis there were several misdiagnoses -- a mild case of Bell's palsy, several doctors said, or an acoustic neuroma, a noncancerous tumor. But biopsy results showed he had a deadly tumor.

The first surgeon told Psomas he had three months to live and to get his affairs in order, that the tumor was inoperable and that he didn't think radiation or chemotherapy would help, Psomas said. At first the diagnosis didn't hit him, he said, but that night the former transit officer began to cry. He thought of his daughter, Laura, then a toddler.

"How could my little girl grow up without knowing me? I wanted to drive her to camp, go to her recitals, PTA meetings," recalled Psomas, of Levittown. "I wanted to dance at her wedding."

His brother, Jim Psomas, who was working then in the clinic of the Metropolitan Detention Center in Brooklyn, put him in touch with a doctor he knew who walked Psomas through the process of seeing doctors at Memorial Sloan-Kettering Cancer Center. There, a doctor said heavy doses of radiation might get rid of the cancer. Psomas underwent radiation for the month of April 1984, five days a week.

"That's what knocked it out," he said. Treatment was a tough regimen -- he gained 60 to 70 pounds from taking a heavy dose of steroids to treat swelling in the brain, and the radiation knocked out his thyroid.

"And I lost my sideburns; I couldn't be like Elvis anymore," Psomas said.

The treatment was successful. Psomas was able to lose the extra weight and now exercises, sees his endocrinologist and takes his thyroid medicine. He's gone from checkups twice a year to having an MRI every other year.

The experience taught him to count his blessings.

"The pediatric ward was right by my building, and I could see the kids going in and out, a lot of them bald and sick," he said. "Seeing the kids like that, it sort of calmed me, and gave me a feeling of peace -- I'd already had a good life and done so much more than them. I'd been in the Navy, the Navy Reserves, had a daughter and been a cop. I'd lived my life."

And he knew he had friends. Officers from his transit department volunteered to get him to his daily radiation treatments.

He enjoys traveling with his wife, Donna, going to the shooting range and fishing for fluke with his brother's family. And he loves his four grandchildren.

He did, after all, get to dance at his daughter's wedding.