Photo by Sue Cook – Heather Kuepper was only 23 years old in 2011 when she was diagnosed with a brain tumor. The photo on the left was taken just hours after her surgery. On the right is her discharge from the hospital nine days later.

By Sue Cook, staff reporter

MEDINA – Three years have passed since Heather Kuepper was diagnosed with a Grade III malignant brain tumor (grade IV is the most severe). Doctors said her tumor was so big it was nearly blocking off the flow of cerebral spinal fluid and without an operation, it would continue to grow and would eventually kill her.

Before her diagnosis, Kuepper had experienced headaches, dizziness and numbness. She made an appointment with her primary-care doctor who then referred her to a neurologist in Rochester. The neurologist noticed that the movement of her left eye was jittery, while her right eye moved smoothly.

On June 17, 2011, Kuepper was scheduled for an MRI to rule out the possibility of multiple sclerosis.

“I never expected it to be anything more than that,” said Kuepper.

She was asked to have a seat while waiting for her results. She noticed many people who were also having MRIs were leaving faster than her. She assumed that perhaps other people were just there for quick follow-ups.

“They called me up and told me they were trying to get a hold of my primary-care doctor. I was waiting there for probably three or four hours. They finally got a hold of him and he pulled me into a private room. He told me, ‘I’m sorry. You have a brain tumor.’ At that point, I tuned out everything he was saying. I heard noise, but I couldn’t even focus on anything.”

Provided photo – Kuepper’s tumor, circled in red, was located in the posterior fossa. It was starting to grow on her brain stem.

Because of the size and location of the tumor, Kuepper’s first neurosurgeon referred her to Dr. Silberstein, a pediatric nuerosurgeon who had more expertise. Kuepper’s tumor was an ependymoma, which is a type of brain tumor rarely found in adults.

On July 6, Silberstein began the scheduled six-hour operation at Strong Hospital. The surgery would take 13 hours.

Kuepper woke up to find herself intubated with a breathing tube down her throat because she would be unable to breathe on her own without it during recovery. She was in a room where four nurses provided 24-hour surveillance on her.

During her hospital stay, she also had to learn to eat, talk and walk again. She was put through physical, occupational and speech therapy. She was eventually moved to a regular hospital room with less intensive care.

Nine days after admission, Kuepper was released from the hospital. She had to take 30 pills a day. Kuepper also needed 33 radiation sessions over six and a half weeks. She continued another two to three weeks of other therapy sessions to increase her functionality.

‘I’d rather look silly and stupid, than be dead.’ – Heather Kuepper

Kuepper does have some after-effects from her experience. She has anxiety problems that her doctor said can be post-traumatic stress, which is common in people who have a similar situation, because of how intense and terrifying her experience was. She also has felt survivor’s guilt, but tries to focus on how lucky and blessed she is.

“I do have issues with memory. I had just enrolled in college within weeks of finding out that I had a tumor, so I had to pause while I had the surgery and was trying to recover,” she said. “Everything I learned in that time, I don’t remember and that has caused a lot of depression issues for me, but I’m getting a lot better from that now.”

Today, Kuepper works for CRFS in Albion. She sometimes struggles with retaining new information.

“At work, I have to carry a packet of information with me for about two months before I can do it on my own,” she said.

Provided photo – Kuepper had 13 stitches to seal the nearly 5-inch incision running up the back of her neck. This photo was taken after she had begun to heal.

Kuepper explained that there are 120 different kinds of brain tumors. It is the most common form of solid tumor for children under age 15. Brain tumors are the second-leading cause of cancer-related deaths in children under age 20 (behind leukemia). They are the second-leading cause of cancer-related death in males and the fifth-leading for females between the ages of 20-39.

She advises that people should take their symptoms seriously for any illness or health problem.

“I would definitely say if you think you’re being silly getting worried about symptoms, don’t,” she said. “Go to the doctor. I had put off symptoms for a couple weeks, but when they kept happening, something in me just kind of told me to go to the doctor and see what it was. I never in a million years would have thought that I’d have brain surgery and me going through radiation. My motto now: I’d rather look silly and stupid, than be dead.”

She is also going to run a half marathon on May 25 in Buffalo. She is using the run to raise money for brain-cancer research through Race Toward a Cure during May, which is Brain Tumor Awareness Month.

For those who would like to donate to her efforts, you can see her fundraising page by clicking here.

Photo by Tom Rivers – The Care Net Pregnancy and Family Center of Greater Orleans started offering free HIV testing last week. The center in Albion also provides free ultra-sounds, pregnancy tests, sexually transmitted infection testing and resources to families in crisis. Center Director Gloria Lear, left, is pictured with nurse manager Mary Jane Jimenez, center, and Sara Moore, the nurse manager in training.

ALBION – A center with a 25-year history in Orleans County has expanded its services and also changed its name.

The Care Net Center of Greater Orleans is now the Care Net Pregnancy and Family Center of Greater Orleans. That name more clearly reflects the center’s work and mission, said Director Gloria Lear.

She started working at Care Net in September and many people have told her they weren’t sure what the center did. Care Net is funded with donations from churches and community members. It provides free pregnancy tests, ultrasounds, tests for sexually transmitted infections, and other resources for families, including peer support and material aid.

Last week it started offering free HIV tests. The center takes a blood draw for those tests. If there is a positive test, Care Net will connect the person to medical professionals in Buffalo or Rochester.

A detection is needed to help people access HIV treatment and care. Many people with HIV live long and productive lives with proper medication, Lear said.

The Care Net center worked with 155 new clients last year, and already has served 102 new clients since Jan. 1.

Mary Jane Jimenez has worked as the nurse manager for the center the past eight years, and has watched the organization add ultra-sounds, STI testing and now HIV testing. It also moved from the Arnold Gregory Memorial Complex to the former Lipton’s office building across from McDonalds on Route 31.

“It’s getting better and better and we’re serving more people,” she said.

For more on Care Net, click here.

Photos by Sue Cook – More than 300 people attended the For Women Only event at the White Birch Golf Course in Lyndonville. The event raises an average of $5,000 each year through ticket sales, raffles and other fund-raisers. That money goes to Orleans Community Health for the cancer services program, which assists women who are unable to afford screening due to insufficient or no insurance.

By Sue Cook, staff reporter

LYNDONVILLE – Last night, the White Birch Golf Course was host to more than 300 attendants for the 18th Annual For Women Only breast-cancer awareness event. The event brings together survivors and supporters alike to educate women about the need to be screened for breast cancer and other types of cancer. That should raise survival rates and treatment success.

“Breast cancer is the second leading cause of cancer deaths in women,” said Lisa Franclemont of the Cancer Services Program of Genesee and Orleans. “The greatest risk factor is being a woman and aging. Of other risk factors, three-quarters of breast-cancer patients have no known risk factors.”

‘If you haven’t had a mammogram, get it done.’ – breast cancer survivor Patty Olinger

Franclemont said that women are frequently told by their doctors if they are older than 50 they no longer need mammograms or screening.

“Over 75% is found in women over age 50. Therefore, if you have been told you do not need one because of your age, this is not true,” she said.

Local artist Carol Culhane provided calligraphic writing on quilt squares with messages written by attendees to honor or memorialize those who have been affected by breast cancer. The quilt will be hung in Medina Memorial Hospital once it is completed by Debbie Secrist.

Franclemont explained that if cancer and treatments would ruin your quality of life as an older woman, then testing to prevent advanced cancer should be a priority, regardless of age. The New York State cancer registry says that 14,000 women are diagnosed each year and around 2,800 die annually.

Women in their 20s should perform monthly self exams. Women over 40 should have mammograms, but people with risk factors should get one when they are younger. She also encourages women to become “breast friends” and remind each other to get checked.

Patty Olinger is a breast-cancer survivor of four years. She tells the crowd about the need for both mammograms and self exams. A mammogram didn’t detect her cancer, but she felt a lump later on.

“If you haven’t had a mammogram, get it done,” Olinger told the crowd. “If you’re making excuses, stop making excuses. If you think it’s going to hurt, it’s not a big deal. What hurts more is telling your kids that you’ve got breast cancer because you see their faces, and I don’t care how big and strong you think they are, it’s the worst thing you’ve ever done.”

Darlene Rich stands with other breast-cancer survivors. Survivors were asked to stand and be recognized for their strength.

Shelby Town Clerk Darlene Rich was diagnosed eight years ago with breast cancer. She remembers the day perfectly because she found out the same day of the For Women Only event in 2006. For her treatment, Rich was able to do a radiation seed twice a day for five days followed by chemotherapy sessions because her cancer was caught early as Stage 1 intraductor carcinoma.

She encourages those who are diagnosed or survivors to reach out to each other for support.

“If someone was diagnosed, they could call me and talk to a survivor,” she said. “I believe in talking about mammograms. I am living proof mammograms do work.”

Rich said she appreciates community events such as For Women Only. “It does spread word.”

The evening also featured laughter as a healing tool. DIVA by DIVA performed during the evening. The group of women is a rotating crew of women from different places and walks of life who attend events for women to offer inspiration while also helping with fundraising efforts. Last night, they sang songs, read poems and quotes, danced and even got the whole room involved in singing “You’ve Got a Friend” to conclude the performance.

The group DIVA by DIVA from Buffalo includes, from left: Ann Mosner, Mary Kate O’Connell, Donna Sawicki, Karen Cassiey, Carol Wrozek, Lynn Hodson and Mary Moebius.

“Laughter is a great healer. I saw a granddaughter, mother and grandmother all laughing together. If we can do that through theater, then why not?” said group leader Mary Kate O’Connell.

To schedule a mammogram at Orleans Community Health in Medina, call 585-798-8054. For more information about Community Partners and their services, call (585) 798-6641.

By Nola Goodrich-Kresse, Public Health Educator for the Orleans County Health Department

We all know about the importance about taking care of our health – eating right, getting enough sleep, exercising. Healthy habits positively influence how a person feels and how their body functions.

But good health involves not only caring for our body, but also our mind.

The fact is our mental health is vital to our overall health.  Far too many Americans fail to incorporate a principal component into their health choices. Yet overall health and wellness are not possible without it.

What is mental health? If you were to ask your office mate, spouse or neighbor, they may respond that it is a “state of mind,” “being content with life” or “feeling good about yourself.”  Simply put, mental health is the ability to cope with daily life and the challenges it brings.

When a person has “good” mental health, they deal better with what comes their way. By contrast, “poor” mental health – such as feeling overwhelmed by stress – can make even day-to-day life difficult.

Poor mental health can also significantly harm a person’s physical health. For instance, research shows that stress is closely linked to high blood pressure, heart disease and obesity. It also shows that people who feel depressed or chronically stressed may have a greater risk of physical illnesses.

The good news is there are many healthy choices and steps that individuals can adopt to promote and strengthen mental health – and overall health and well-being.

A healthy lifestyle can help to prevent the onset or worsening of depression, anxiety and other mental health conditions, as well as heart disease, diabetes, obesity and other chronic health problems. It can also help people recover from these conditions.

This May is Mental Health Month, and the Orleans County Health Department is raising awareness of the role mental health plays in our lives and providing tips and resources so anyone can take steps to promote good mental health.

These include building social support, eating with your mental health in mind, recognizing the signs of stress, and knowing when to reach out for help.

Just as Americans have learned there are things they can do to reduce their risk of heart disease and other illnesses, the Health Department wants to help people learn what they can do both to protect their mental health in tough times and also to improve their mental well-being throughout their lives.

We need to care for both our body and mind. Talk to your health care provider about your mental health at your next visit.  You can also learn about mental health services through your county mental health department or the local Mental Health Associations (MHA).

The Orleans County Mental Health can be reached at 589-7066. In Orleans County, the Mental Health Association number is 589-1158.  If you are having a mental health emergency, please call 911 or the RAP line at 800-889-1903 (Orleans County).

By Nola Goodrich-Kresse, Public Health Educator for the Orleans County Health Department

You want to do what is best for your children. You know about the importance of car seats, baby gates and other ways to keep them safe. But, did you know that one of the best ways to protect your children is to make sure they have all of their vaccinations?

Immunizations can save your child’s life. Because of advances in medical science, your child can be protected against more diseases than ever before. Some diseases that once injured or killed thousands of children, have been eliminated completely and others are close to being a thing of the past – primarily due to safe and effective vaccines.

One example of the great impact that vaccines can have is the elimination of polio in the United States. Polio was once America’s most-feared disease, causing death and paralysis across the country, but today, thanks to vaccination, there are no reports of polio in the United States.

Vaccination is very safe and effective. Vaccines are only given to children after a long and careful review by scientists, doctors, and healthcare professionals.

Vaccines will involve some discomfort and may cause pain, redness, or tenderness at the site of injection but this is minimal compared to the pain, discomfort, and trauma of the diseases these vaccines prevent.

Serious side effects following vaccination, such as severe allergic reaction, are very rare. The disease-prevention benefits of getting vaccines are much greater than the possible side effects for almost all children.

Immunization protects others you care about. Children in the U.S. still get vaccine-preventable diseases. In fact, we have seen a return of measles and whooping cough (pertussis) over the past few years.

From January through July 2013, more than 11,000 cases of whooping cough were reported, with cases in every state.  Last year was a record year, with over 41,000 cases reported, the most since 1955.

There were also 18 deaths reported in 2012, most of which were among babies younger than 3 months old. Unfortunately, some babies are too young to be completely vaccinated and some people may not be able to receive certain vaccinations due to severe allergies, weakened immune systems from conditions like leukemia, or other reasons.

To help keep them safe, it is important that you and your children who are able to get vaccinated are fully immunized.  This not only protects your family, but also helps prevent the spread of these diseases to your friends and loved ones.

Immunizations can save your family time and money.  A child with a vaccine-preventable disease can be denied attendance at schools or daycare facilities. Some vaccine-preventable diseases can result in prolonged disabilities and can take a financial toll because of lost time at work, medical bills or long-term disability care.

In contrast, getting vaccinated against these diseases is a good investment and usually covered by insurance. The Vaccines for Children program is a federally funded program that provides vaccines at no cost to children from low-income families.

To find out more about the VFC program, click here and ask your child’s health care professional or call your local health department.

Immunization protects future generations. Vaccines have reduced and, in some cases, eliminated many diseases that killed or severely disabled people just a few generations ago. For example, smallpox vaccination wiped out that disease worldwide.

Your children don’t have to get smallpox shots anymore because the disease no longer exists. By vaccinating children against rubella (German measles), the risk that pregnant women will pass this virus on to their fetus (developing baby) or newborn has been dramatically decreased, and birth defects associated with that virus no longer are seen in the United States.

If we continue vaccinating now, and vaccinating completely, parents in the future may be able to trust that some diseases of today will no longer be around to harm their children in the future.

Photos by Tom Rivers – Nola Goodrich-Kresse, public health educator for the Orleans County Health Department, talks about the sugar content in popular beverages. Goodrich-Kresse said the sugar in soda and energy drinks adds hundreds of calories.

ALBION – Genesee Community College is promoting health at all ages of life during a wellness fair today at the Albion campus on Route 31.

There are 14 vendors at the fair, which was organized by a student-run Wellness Coalition at the college.

“In America we are becoming an obese country,” said student Kassy Sutton of Holley, a member of the Wellness Coalition. “There are alternatives for kids to watching TV and playing video games.”

Danny Anderson, program manager for the Orleans County YMCA, discusses the benefits of exercise and the opportunities at the Y.

Today’s wellness fair runs until 2:30 p.m. It is the biggest project for the Wellness Coalition, but the group has had a healthy snack bake sale with sugar substitutes. It is looking into other activities to promote exercise and healthy living.

“We want people to think about what kind of life do you want to have?” said student Melissa Qualey of Holley, a member of the Wellness Coalition.

A person in good mental, physical and emotional health can be more active and engaged in the community, at work and with their families, she said.

GCC professor Pam Lusk is advisor for the Wellness Coalition. The group organized its first health fair in 2012. It plans to make it a regular event every two years.

Diana Fulcomer, community specialist for GCASA, speaks with GCC students at a health fair today.

County ranks near bottom in many health categories

Photo by Tom Rivers – Paul Pettit, Orleans County Health Department director, talks about the county’s health rankings and a community health assessment and improvement plan during an Albion Rotary Club meeting on Thursday.

ALBION – Orleans County health officials want to engage a broad base of the community to improve many health factors and indicators in the county, which rank near the bottom among the 62 counties in the state.

The Health Department can’t do it alone and needs help from non-profit organizations, civic groups and businesses to have a healthier county, said Paul Pettit, the county’s health department director.

Ultimately, it will come down to individuals making healthy choices, such as not smoking, exercising and eating nutritious foods, he told the Albion Rotary Club on Thursday.

“It will take a group effort and you, as an individual, to move these numbers in a positive direction,” he said.

Orleans fares among the worst in the state for access to primary care physicians and dentists, while its residents have high rates of smoking and adult obesity. An annual County Health Rankings report also says Orleans residents choose fast food at a rate above the state and national averages.

Overall, the report ranks Orleans as the 52^nd healthiest county out of 62.

The annual County Health Rankings report provides a community health profile of about 3,000 counties in the United States. The report looks at health outcomes – rates of premature death, low-birthweight babies and days of poor physical and mental health. The “health factors” category includes alcohol and tobacco use, diet and risky sexual behavior.

Orleans ranked 52^nd in health outcomes, 57^th in health factors, 58^th in health behaviors, 62^nd in access to clinical care, 45^th in social and economic factors and 50^th in physical environment, which includes air quality, drinking water safety and access to recreational facilities, healthy foods and fast food.

A new report is due next week. Pettit was given a sneak peak at the data and he said the county hasn’t shown much improvement in the categories.

Orleans has a plan that will help improve the health of residents, said Nola Goodrich-Kreese, the county’s public health educator. The county finished a Community Health Improvement Plan (click here) and also a Community Health Assessment (click here). Both were done in collaboration with Genesee and Wyoming counties. The three counties together have about 150,000 residents.

The counties established priorities that include preventing chronic diseases; reducing obesity; reducing illnesses, disabilities and deaths related to tobacco use and second-hand smoke exposures; and strengthening infrastructure for mental health.

Orleans is seeking grants for diabetes prevention, is seeking to replicate Genesee County’s Get Fit! community exercise program, is working with Smoke-Free Now to reduce tobacco exposure, and will try to increase awareness of mental health services in the county and in the region.

The three counties surveyed 1,700 residents and they listed their top concerns as cancer, 45.5 percent; heart disease, 44.0 percent and depression, 41.7 percent.

Statewide the following were identified as public health priorities: Prevent chronic diseases; promote healthy and safe environments; promote healthy women, infants and children; promote mental health and prevent substance abuse; and prevent HIV, sexually transmitted diseases, vaccine-preventable diseases and healthcare associated infections.

Provided photo – Kathy Jurs is pictured with characters at Disney World after running a half marathon in January. She raised $5,123 which was the most of anyone from western and central New York.

ALBION – When Kathy Jurs battled Non-Hodgins lymphoma in 2010, she could count on a card in the mail or a treat from Susan Bennett.

Jurs was 29 when she was diagnosed with a cancer of the lymphoid tissue. She lost nearly all of her hair while enduring chemotherapy and radiation. Bennett was always a source of encouragement.

“She would send me notes and gifts,” Jurs said.

Jurs, 32, made a full recovery and returned to work at Poverty Hill Farms in Albion. She has worked there since she was 15. She is the herdsman and calf manager. She arrives at work at 4:45 in the morning and stays until about 4 or 4:30.

Amy Neal is her best friend. Amy is married to Jamie Neal, one of the farm co-owners. She is also Bennett’s daughter.

In June, Bennett was diagnosed with the same cancer as Jurs. Kathy decided she would raise money for research for the disease by running a half marathon at Disney in January.

“I wanted to get into shape, stay healthy and do it for Susan,” Jurs said.

She trained five days a week, including long runs on Saturdays. She joined a group at Mendon Ponds for the Saturday treks. The runners were all raising money for the Leukemia and Lymphoma Society.

In four months, Jurs ran over 400 miles getting ready for the half marathon. The sponsors poured in, with Jurs collecting $5,123, the most of any participant from western and central NY.

Photo by Tom Rivers – Jurs works as the herdsman and calf manager at Poverty Hill Farm in Albion, which is owned by the Neal family.

“I never dreamed we could raise that much money,” Jurs said.

Bennett was popular in the community. She was active at the Barre Presbyterian Church and as bookkeeper at Al Bennett and Sons, a feed and farm supply store in Barre. Her husband Richard was a long-time county legislator.

“Everybody knew Susan,” Jurs said. “She talked to everybody.”

Jurs set out to finish the 13.1-mile run in under 3 hours. She met that goal on Jan. 11. Her euphoria in finishing was crushed after the race when she learned that Bennett had died that morning at age 67.

Jurs intends to keep running, and raising money for the Leukemia and Lymphoma Society. She plans to run the Flower City Half Marathon in Rochester on April 27.

Richard Bennett praised Jurs for her good heart and determination. When his wife was battling cancer, Jurs often sent her notes and gifts.

“Kathy was her constant booster,” Mr. Bennett said. “She encouraged Susan a lot. It gives you faith in the young people today. They are a very giving group.”

By Nola Goodrich-Kresse, Public Health Educator for the Orleans County Health Department

When was the last time you thought about what you were drinking? Did you know that the rising trend in obesity rates in the nation have followed the rising trend of sugar-sweetened beverages?

Sugar-sweetened beverages are considered any beverage with more than 25 calories per 8-ounce serving. According to the UCLA Center for Health Policy Research, research shows that caloric intake from soft drinks has increased by 228 percent between 1977 and 2001, and that the portion sizes have increased from 6.5 fluid ounces in the 1950s to more than 20 fluid ounces today. The average American consumes 50 gallons of soda or other sweetened beverages each year.

Sugar-sweetened beverages are not limited to soda (or pop, depending on where you are from), but also include non-100 percent fruit drinks, sports drinks, flavored water, energy drinks, and pre-sweetened tea and coffee.

These drinks are high in calories, have no nutritional value and include any of the following sweeteners:  sucrose, fructose, glucose, high fructose corn syrup, brown sugar, corn sweetener, corn syrup, dextrose, fruit juice concentrates, honey, invert sugar, lactose, maltose, malt syrup, molasses, raw sugar, sugar and syrup. Each day the average American consumes 22 teaspoons of sugar, much more than the recommended 5 to 9 teaspoons per day.

Another concern is the so-called “energy” drinks. These are mostly made up of water, sugar and caffeine along with other additives. Not only do these drinks provide empty calories, but the higher levels of caffeine are known to increase jitteriness, irritability and effect normal sleep patterns, which can have an effect on concentration and alertness, when having too many energy drinks.

Studies have shown caffeine can increase blood pressure and increase heart rates. According to a recent MedicineNet article, the average American takes in about 280 mg/day of caffeine. An 8-ounce serving of regular black brewed coffee is about 135 mg and an 8 ounce cup of black tea is 40-70 mg.  Some of the energy drinks have two or three times the amount of caffeine and generally are a serving size of 12 to 20 ounces.

Here are some tips to help you enjoy your favorite beverages in moderation and try some new low/no calorie drinks:

Choose water as your beverage of choice throughout the day, every day.

Add some fruit to your water to give it a little flavor. Lemons, limes, strawberries, even cucumber can give your water a boost of flavor. Be creative.

Drink unsweetened tea or coffee. Add some lemon, lime, or cinnamon stick to your hot or cold plain tea. Add a drop of vanilla, almond or other flavoring to your hot or cold plain coffee.

Drink from a cup instead of a bottle. Most bottled beverages are more than 8-ounces. If you have a favorite glass or cup, find out how much liquid it holds before using it.

If you want to have a sugar-sweetened beverage, only have a limited amount, such as 8 ounces and only 1 or 2 days a week. Check the serving size on the bottle to find out how many calories are in 1 serving and multiply it according to how much you plan on drinking.

If you notice you are having trouble sleeping, seem more irritable or jittery and have trouble concentrating and staying alert, limit caffeinated beverages.

Measure out 17 teaspoons of sugar and put it in a dry 20-ounce beverage bottle to give yourself a picture of how much sugar you are drinking. Keep it near your fridge to remind you of what your sugar-sweetened drinks contain.

Remember any sugar-sweetened beverage should be considered a treat, not a daily choice. Helping limit the amount of these calories can help limit the effects of becoming obese.

Provided photo

HOLLEY – Megan Gotte, a registered nurse who lives in Kent, didn’t let a blizzard stop her from providing care last Wednesday. Gotte rode her snowmobile to see a patient in Holley, who had to be seen that night.

Gotte works as an evening nurse for HCR Home Care, which serves patients and families in 19 counties in New York, including 17 rural counties. Gotte works with patients in Orleans and Genesee counties.

“HCR’s rural health care nurses routinely overcome the unique challenges of providing home care to rural residents,” the company said in a statement. “The latest evidence was during the March 12 blizzard.”