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Abbreviations & Acronyms
dx diagnose, diagnosis
FSH follicle-stimulating hormone
IBS irritable bowel syndrome
IVP intravenous pyelogram — study to look at the kidneys and ureters
NED no evidence of disease
s/s signs & symptoms
SLS second-look surgery
TAH / BSO total abdominal hysterectomy / bilateral salpingectomy and oophorectomy — removal of, respectively: uterus, fallopian tubes and ovaries
tx treat, treatment
US ultrasound
WAR whole abdominal radiation
   
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Pam and Nina

Submitted on 08/28/2003
Photo of Pam and Nina Living Day to Day
With Love and Faith


Pam's and Nina's stories, written by journalist Sherry Anderson, are reprinted with permission from the Southwest Orlando Bulletin.

On a quiet street in Southwest Orlando live two women whose lives have followed similar paths in more ways than they ever expected. They each have two daughters, and over the years, they have had their fair share of homework, trips to malls, and carpooling to friends' houses and after-school activities. They also have had their own work and volunteer commitments. The similarities in their lives are noticeable, but what most people do not realize is that these women share a bond that goes beyond any neighborhood, school group, or car pool. They know and understand what it is like to face life-threatening illnesses and meet them head-on with unwavering strength and determination.

Pam's Story

Pam Fogle is well-known to many families in the Southwest community. Wherever her daughters, Jennifer and Heather, went to school, Pam also was there. She served as ADDitions coordinator at Dr. Phillips Elementary School; president of the PTA at Bay Meadows Elementary School for the first two years the school was open; treasurer and president of the PTSA at Southwest Middle School; and vice president and president of the PTSA at Dr. Phillips High School. Today, students still remember her as "Mrs. Wishy-Washy" the storyteller, as the queen of England at BMES's World Bazaar, or as a familiar face at ballgames and school events.

"Children are my life," Pam once said, and her volunteer efforts have been recognized with several awards, including Orange County Council PTA Volunteer of the Year and a regional award for the Kraft/Walt Disney World Volunteer of the Year. In her honor, Bay Meadows PTA annually presents the Pam Fogle Volunteer Award to one parental volunteer and one fifth-grade student who show service to the community through volunteerism.

In the fall of 1994, Pam and her family were looking forward to a relaxing trip to the Florida Keys before another busy school year got under way. Heather was 13 and in the eighth grade at SWMS, and Jennifer was a 16-year-old junior at DPHS.

"We were on our vacation in the Keys when I had a severe ulcer attack," Pam said. "I had been on medication for ulcers in my stomach and esophagus for several years, but I had been eating all the wrong things - like fried foods and margaritas. Usually within 10 to 12 hours, the pain would subside. This time it lasted for three days, and I finally told my husband, Bill, that I needed to go to the emergency room."

At Fisherman's Hospital in Marathon, Fla., Pam was given medication and told that if it was an ulcer attack, she would feel better within a few minutes. The pain continued, and doctors ordered a series of X-rays and a sonogram. The tests indicated that Pam had gallstones, and the doctor wanted her to have emergency gallbladder surgery. But Pam wanted her family members to enjoy their vacation, and she wanted to consult with her own doctor in Orlando before having surgery. She was given some medication to ease her symptoms and agreed to see a surgeon the next day, just in case her symptoms worsened and emergency surgery was needed.

"He was the one who told me that they also had seen a small mass in the pelvic area, and he felt like I needed to see my gynecologist," Pam said. "I went right to the phone and made an appointment with my primary-care physician to see me when we got back home."

Pam's primary-care physician agreed with the surgeon in Marathon that Pam should have her gallbladder removed and consult with a gynecologist, even though she had been unable to detect anything out of the ordinary during Pam's pelvic exam.

"When I saw the gynecologist, he said the same thing," Pam said. "He said there might have been something wrong with the X-ray film. I thought, Well, that's what it was. After all, I had had two pelvic exams."

Pam did not know it at the time, but Bill was not reassured and asked the surgeon performing the gallbladder surgery to look at her other organs while he had the laparoscope inserted.

"The surgeon noticed a large mass about the size of a saucer on my right ovary," Pam said. "He contacted my gynecologist, who asked for a Ca125 blood test immediately. I went home to wait."

Pam waited for five long days before hearing the news that her blood count from the Ca125 test was almost 400. A normal range is 0 to 30. Pam was referred to Dr. Neil Finkler of the Walt Disney Memorial Cancer Center at Florida Hospital and was told that she would have to wait another week to see the doctor.

"My mother said, 'No way are we going to wait,'" Pam said. "So she got on the phone, and I got in to see him in two days. My mother was very strong through all of this."

Before Pam saw Dr. Finkler, a friend gave her some valuable advice.

"She said, 'Pam, when you go, you make sure you feel comfortable in this place, because you are probably going to spend the rest of your life going there for checkups. You need to be comfortable with everything, not just the doctor.'

"At the time, Dr. Finkler was in a little office across the street from the hospital, and it was packed," Pam continued. "I walked in, and it felt like I had an immediate bonding with everyone in the waiting room. [The staff was] so sweet and so loving, and the doctor came in and was like a knight in shining armor. I knew I was in the right place."

Dr. Finkler's exam detected a large mass on Pam's left ovary.

"I knew the surgeon said that he saw something on the right ovary, so I knew I was in big trouble," Pam said. "At times, I felt like I was watching a bad movie. The actors were great, but the story line wasn't."

It had been only six days since Pam's gallbladder surgery, and her body still needed to heal. She would have to wait two weeks before having a complete hysterectomy and almost another week to get the pathologist's report, which confirmed that she had Stage III ovarian cancer.

"Dr. Finkler did not feel that I needed chemotherapy right then," Pam said. "He felt very positive [that all the cancer had been removed]. I remember I asked him if I was his wife, would he recommend chemotherapy at this time, and he said definitely not, because he did not like the idea of putting toxins in the body if we didn't have to."

Pam saw Dr. Finkler every month and regularly had Ca125 blood tests. Her count stayed around 17 to 23 for approximately six months, and then it began to slowly rise. By October 1995, one year after her hysterectomy, her count was up to 78, and laparoscopic surgery revealed the same cancer cells in her stomach. Chemotherapy could no longer be avoided. In January 1996, Pam began a series of six chemotherapy treatments, one every three weeks.

"I really didn't get that sick," she said. "I thought I was prepared to lose my hair, but I absolutely lost it. I can't describe the feeling. I thought I was ready, but I wasn't. Heather had the hardest time with me losing my hair. She hated it. She didn't even want to look at me at first if I didn't have on a wig, hat or turban. She was only 14, and Mom was not supposed to get sick."

Pam finished her last treatment right before Jennifer's high-school graduation.

"It probably helped me a lot that I kept myself busy with her activities and getting her ready to go to school," Pam said. "The house was constantly busy with the girls' friends. There were times I wish I had stayed in bed, but I didn't want to disrupt their lives."

Sometimes in the early morning hours when the girls were still asleep and the house was quiet, Pam would lie awake, and fear and doubt would creep into her thoughts.

"I would think, What are my children going to do? and How can I ever miss all of this?" Pam said. "I wanted to see my girls graduate from high school and college and get married and have my grandchildren. Then I'd kick myself, or if I was still down later, then maybe a friend would do it for me, and I would get over it. I never really dwelled on the thought that I wouldn't get well. I truly felt like I would."

Pam said she attributes her positive attitude to her faith.

"I turned it all over [to God]," she said. "From the day I found out I had cancer, I put myself in a constant state of prayer and thanksgiving. I believe that this is the only way I could have survived physically and emotionally. I think that had a lot to do with my attitude - and the fact that my family and friends always seemed to be there whenever I might be hitting a low point. I couldn't have asked for them to be any stronger."

Pam said she even received cards and letters from friends of friends.

"It really lifts you up to think someone has thought about you," she said.

Now when she hears about someone who has cancer, she always tries to write the person a note of encouragement.

Pam has continued to depend on the love and support of her family, including her parents, Art and Martha Beach of Winter Garden, who have been by her side for every procedure and treatment.

Last year, Pam's Ca125 count began to rise again, and a computerized-tomography, or CT, scan revealed a small spot on the outside of her left lung. A needle biopsy determined that it was the same cell as the ovarian cancer. In April 2000, Pam began another round of six chemotherapy treatments. Her daughter, Heather, now a college student at Santa Fe Community College in Gainesville, came home last summer to care for her mother.

"I felt like I'd lost my best friend when she went back to school," Pam said.

Jennifer, who is in a management-training program with Macaroni Grill, is living at home again and keeping an eye on Mom.


Jennifer Fogle keeps an eye on her mother, Pam, while her sister,
Heather, attends Sante Fe Community College in Gainesville.

Pam is in remission and is going every three months for her blood tests.

"I'll go through chemotherapy as many times as I have to, if that's what it takes," she said. "You do what you have to do. You pick yourself up and dust yourself off."

Recently, Pam had a positron-emission tomography, or PET, scan, which is similar to a CT scan. Glucose is injected into the body, and if there is any cancer present, it will show up like a hot spot. Pam feels that insurance companies are hesitant to authorize its use because it is an expensive test. Its real value to her came in the form of peace of mind.

She tries not to think about what might have happened if she had not had the gallbladder attack that prompted the X-rays. She always kept up with her annual visits to the gynecologist, and she never had any discriminating pain. In her early 40s, she was under the typical age for the onset of ovarian cancer.

"Ovarian cancer is so hard to diagnose because the symptoms are what every woman goes through at one time or another," Pam said.

Throughout her ups and downs with cancer, Pam has remained an active mother and volunteer. Four years ago, she also became a school employee as an office clerk at Bay Meadows.

"The Bay Meadows family has been so good to me," Pam said. "The teachers and the staff were there for me every day. They helped look after my family with food after each treatment. The children and their parents have been so supportive. I was concerned with how the children would react to seeing me with a hat on. They still came in and hugged me as if everything was the way it should be.

"God said that he will help those who help themselves, so I made it my challenge to try and keep a positive outlook. I guess that old saying 'When life gives you lemons, make lemonade' is true. Faith has been a constant with me. I have learned a lot from this whole experience. Life is so very precious. We should embrace every moment and learn to be more tolerant and understanding of people. We really shouldn't sweat the small stuff. I value life, family and my friends more every day."



Nina's Story

Just down the street from the Fogles' home is the house where Nina Bamberger lives with her husband, Andy, and their daughters, Lauren and Diana. Nina's story begins in a similar way - with another medical problem leading to the diagnosis of Stage IV ovarian cancer.

Nina describes herself as a full-time mother and full-time producer. She has worked for more than 20 years for Sesame Workshop, the producers of Sesame Street, and currently is the executive producer of Dragon Tales, a preschool series co-produced by Sesame Workshop and Sony Columbia Tristar Television. Dragon Tales is nominated for a Daytime Emmy as Outstanding Animated Children's Series, and when the awards ceremony is held in New York on May 18, Nina will be there as a winner, regardless of whether she comes home with the award.

Dragon Tales premiered on PBS in June 1999 and quickly became one of the top-rated preschool series on television. Traveling between Orlando, New York, Los Angeles and London would be exhausting for most people, but Nina has always thrived on her work. When the year ended, she felt like she was on top of the world.

"I was at a point that I would consider to be one of my happiest and, I thought, healthiest times of my life," Nina said. "When I'm in Orlando, I work at home, and I think I've always been able to balance my two wonderful daughters' lives. I also was exercising and thought I was at a weight I should be. I had a ton of energy. I thought everyone was thriving. This was all a big surprise."


In remission from Stage IV ovarian cancer,
Nina Bamberger relishes spending time with her
daughters, Lauren (left), and Diana.
Nina said, "Being a mother fills me with an indescribable fullness and joy."

A routine mammogram revealed a small cyst, and Nina was sent to a surgeon to have a sonogram and a closer look. She was not concerned, and the doctor confirmed that it was a benign cyst like others she had before. But the surgeon was concerned about her swollen lymph nodes, and he immediately did a needle biopsy. Again, Nina was not concerned. She assumed her lymph nodes were swollen from a recent bout of the flu. She was stunned when the doctor called her four days later with the pathology report.

"I thought he would call and say it was nothing, but he said he thought it was papillary thyroid cancer," Nina said. "He thought I had cancer in my thyroid and that it had spread to my lymph nodes."

Nina had her thyroid and lymph nodes removed, and she was surprised to learn when the pathology report came back that there was no evidence of cancer. The surgeon's theory was that, since only a small section of the thyroid was sent to pathology for a biopsy, it was possible that this section did not have any cancer cells, and the cancer probably would have been found somewhere else in the thyroid. At this point, Nina accepted his explanation and was optimistic, because thyroid cancer has a 95 percent survival rate and is one of cancer's most curable forms.

Prior to her thyroid surgery, Nina asked the doctor numerous times if she should have a CT scan to rule out cancer in other areas of her body.

"I must have asked a million times, and so did my husband and my mother, and [the surgeon] said, 'No, if any scans are needed, they will be done after your surgery.' And that is too bad, because if I had a full-body scan before my thyroid surgery, they would have found the ovarian cancer."

About three weeks after the surgery, when she began to feel better, Nina developed a new problem. She began to feel pressure in her abdominal area and was having difficulty urinating. It was on a Sunday, so she called her friend, Dr. Franz Ritucci, who practices at Florida Hospital Centra Care, an urgent-care center in Lake Buena Vista. He ran a test to see if she had a urinary-tract infection, and it came back negative. Suspecting that something more serious was wrong, he urged her to go to the emergency room for a CT scan.

The scan showed that she had ovarian cancer that had spread throughout her abdominal area and was in an advanced stage. Within the next two days, Nina was seen by her gynecologist and also a surgeon who specializes in women's cancers.

"Within 48 hours, I went from being this person who had always been so healthy to being someone who maybe had only 12 months to live," Nina said. "I was in complete shock. I don't think my husband and I fully understood what had happened to us."

This was on a Tuesday morning, and Nina was scheduled for surgery on Thursday. Top on her priority list was to spend time with her daughters. She was worried about Diana finding a dress for a dance, and so the night before surgery, she went on an outing to the mall with her girls.

On Thursday morning, Dr. Richard Boothby operated on Nina at the Orlando Regional Medical Center. Nina had a partial hysterectomy almost two years previously to remove a benign cyst, but her ovaries were healthy at the time and had been left behind. In this surgery, her ovaries and fallopian tubes were removed, as well as portions of her small intestine and bowel. Cancerous lymph nodes were wrapped around an artery, and after attempts to remove them from the left side of her pelvic area resulted in a nick in her artery, vascular surgery was needed. Dr. Boothby decided to leave some cancerous lymph nodes in her right pelvic area rather than risk further injury to her artery. He felt confident that all the tumors had been removed and that the cancer had not spread to any other vital organs.

The surgical procedure that is done before chemotherapy begins is called debulking, and Nina said, "Dr. Boothby did an aggressive debulking, which is exactly what a patient would want and is one of the reasons that I think he is a wonderful doctor. The second is his compassion. He visited me every day in the hospital and was available whenever I needed to talk to him. He believed in me and my power to try and heal myself and supported and encouraged me throughout my ordeal."

Nina's advice to other persons just learning they have cancer is to look at the physician's education, his prognosis, and his ability to listen to the patient.

"Make sure, in your gut, that you trust him and feel that he is listening to you," she said. "You must take control of your treatment from the very beginning. I have always been a fighter, and I knew I was going to fight this. I believed in my heart that I wasn't going to die, but I just didn't know what to do."

A friend gave Nina a book that provided her with hope and her first sense of direction. Love, Medicine and Miracles by Bernie Siegel, M.D., who practices surgery in New Haven, Conn., and teaches at Yale University, looks at the forces beyond conventional medicine that can heal a patient.

"Dr. Siegel believes that love is the most powerful stimulant of the immune system and that love heals," Nina said. "He believes that miracles happen to exceptional patients every day and that exceptional patients are those who have the courage to love and those who have the courage to work with their doctors to participate and influence their own recovery. He teaches you how to heal your life and fight for it."

Nina said that the book included three principles that she followed: to have a positive, optimistic attitude; to take charge of her own body and treatment; and to have a strong spiritual belief and trust in God.

"I knew I believed in God, but I had never realized how I needed to turn myself over fully to him," she said. "For example, being that compulsive, anal-retentive, type-A+ personality that I've always been, I got out my calendar and marked off all the chemotherapy treatments. I planned my entire life around this schedule.

"After my first treatment, my white cell count was too low to be able to have the second treatment. It was at that moment - I had written it all in pen - at that moment, I thought, Well, I either have to be depressed, or I can say that God knows when it's best for me to have this treatment, and this is not the right time. I went home and erased my appointments, and from that day on I turned it over to him. I had bad days, but I always felt God was watching over me and would take care of my family and me. I felt very loved and very calm, and this gave me strength to concentrate on other things."

To take charge of her own body and treatment, Nina wrote down in a notebook each medication, blood count, and doctor recommendation. She read with interest the information her husband found on the Internet. She talked with friends about treatments and lifestyle changes that had worked for others.

One of the first things Nina did was visit a nutritionist at the M.D. Anderson Cancer Center, where she was having her chemotherapy treatments. The strict diet she followed included low-fat foods, protein shakes, plenty of cooked vegetables, whole grains, vitamin supplements, limited sugar, no caffeine, and no alcohol.

"I used to begin every day with a Starbucks coffee and a bagel," Nina said. "Now I was drinking herb tea and eating oat bran. But for me, the diet was another way I could control my health, and that was very empowering."

Andy prepared daily protein shakes for her and also took over some of the cooking for the family. Friends frequently brought food, including a good friend who is still bringing homemade vegetable soup each week. Nina's mother, Maria Elias, lives in Winter Park and devoted much of her time to caring for Nina and her family.

Nina encourages others who are ill to ask for help and to accept it.

"You have to keep your strength, and this is something that those who love you can do for you," she said. "It makes everyone feel good."

Nina said her friends and family were phenomenal, but she struggled to find words adequate to describe how supportive, strong and loving Andy was and continues to be.

"The hardest part was watching our children trying to cope with a mother who could no longer drive the car pool, who lost 20 percent of her body weight and all of her hair, and who was someone who was often bedridden, tired and sick," Nina said. "The thing I tried to do most often was to talk to them about everything. I didn't want them to think that we were keeping something terrible from them. Since I always believed that I was not going to die, I wanted our children to believe it."

On good days, Nina enjoyed time with her family and continued working and traveling. She also returned to the gym to work out.

"It was not the same intensity, but it made me feel like I was doing something to get my strength back," she said.

She also tried alternative therapies, including weekly acupuncture sessions. Some of the treatments were designed to help toxins pass through the liver more quickly, and other needles induced relaxation. Her oncologists at M.D. Anderson were open to her combining traditional chemotherapy with alternative medicine, and one of the doctors often passed along personal remedies that other patients had found.

"The important thing is to share everything with your doctor so that you don't do anything that would hinder your treatment," Nina said. "Make a list of your vitamins, minerals and anything else you are doing."

She learned about clinical trials from her oncologists, and her case was discussed during a routine conference between physicians at the Orlando clinic and doctors at the M.D. Anderson Cancer Center in Houston. She sought additional opinions from oncologists at Sloan-Kettering and Mt. Sinai hospitals in New York and the Moffit Cancer Center in Tampa. Nina discovered that Dr. Carmel Cohen at Mt. Sinai had more positive results with two additional treatments beyond the six normally prescribed chemotherapy treatments. After sharing this information, she was able to have the treatments at M.D. Anderson.

Throughout her months of chemotherapy, Nina continued to work and travel, but she did so with a different attitude.

"I've always loved my work," she said. "It has always been part of who I am. Before, work demanded a lot from me and took a lot from me, but after becoming sick, I started to use work rather than work using me. I used it as a divergence, but if I didn't feel like working, I didn't. And now I can put my work down at the drop of a hat. When 6 p.m. comes, I put it away and don't think about it. I find I enjoy it much more, and I'm as successful as I was before but much happier. The cancer was a wake-up call to me to the importance of family and friends and, as much of a cliché as it is, to live every moment."

It has been more than a year since Nina's surgery and more than six months since her last chemotherapy session. She's in remission and back to balancing life as a full-time mother and full-time producer. In addition to Dragon Tales, she is the executive producer of a new computer-generated preschool series called Tiny Planets, which is being co-produced by Sesame Workshop and PeppersGhost in London. Her daughters remain her No. 1 priority, and she is overjoyed to be involved with their activities. Lauren is graduating this month from Dr. Phillips High School, and Diana is completing eighth grade at Holy Family Catholic School.

With regular checkups and blood tests, cancer will always be part of her life, but Nina plans to turn her experience into something positive.

"I have met women who are battling cancer, and I am trying to be a supportive voice," she said. "I tell them 'No matter what the statistics say, somebody has to be in that small percentage, and why couldn't that be you?' Miracles happen everyday - things we can't explain - and you have to believe that it can happen, take charge, and have faith."

Nina and Pam wanted to share their stories for several important reasons: to educate women about the symptoms of ovarian cancer and the need to listen to their bodies and to insist on medical tests when things "don't feel right"; to emphasize the importance of obtaining research dollars that have been key to breakthroughs in other forms of cancer; and to inspire cancer patients and their families by showing what love and faith can accomplish.


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