County public service campaign to raise awareness of cancer expands

9 years ago

A County-wide public service campaign that began in 2014 to raise awareness of the importance of early detection and treatment of cancer by profiling the stories of local survivors has expanded to better reflect that cancer is often a battle fought by the community rather than an individual.

Courage in The County is a collaborative effort of five County organizations – TAMC, Northern Maine Medical Center, Clukey’s Auto Supply,

NorState Federal Credit Union and WAGM-TV.  In 2014, the partners featured cancer survivors regularly in a public service announcement on the CBS and FOX affiliates of northern Maine’s only commercial television station.  Feature length written stories were also distributed to all media in the region.

“What we found when we sat down each month with our courageous County friends and neighbors to share their heroic survivor stories is that their battle against the disease was never fought alone,” said Karen Gonya of TAMC. “Rather, each and every person we featured spoke at length about the extensive support network of family, friends, medical providers, community support groups and others who helped carry them through and gave them the courage, strength and encouragement they needed.”

When the project partners came together to consider moving forward with Courage in The County in 2015, it became clear, that to truly represent the fight against cancer throughout the region, the scope of the public service campaign needed to expand to capture how diagnosis and treatment of cancer calls upon a larger, community response.  Together, the decision was made to include those who take the journey with individuals who hear the words “you have cancer” and search for their stories along with new survivor stories.

“Whenever someone must be told they have cancer, the ripple effect is felt by many and it begins with the person conveying the message. These three words, you have cancer, will change the life of the patient who hears it, but it is also experienced at so many different levels by others close to the patient: the provider who must look into the patient’s eyes and give the message, the spouse, child or sibling who fears the unknown and the many other lives that may be touched by the potentially life changing events that will unfold in the coming days, weeks, months and sometimes years,” said Joanne Fortin, project partner representing NMMC.

The patient receiving a diagnosis of cancer cannot take the journey alone and that is why the support system of a patient is a very real part of the fight against cancer,” she added.

Expanding the scope of individuals (and even groups) profiled is not the only new addition to the Courage in The County initiative.  Project partners are also using the public service announcement campaign to raise awareness of the many activities throughout the region that likewise help draw attention and raise funds to support various cancer causes.

Project partners encourage community members to submit cancer survivors, caregivers, medical providers, and other individuals who have been impacted by cancer and, most importantly, had a positive impact on those affected by cancer.

The following are the stories of those who have courageously shared their experiences of cancer detection, fighting the disease, supporting others, survivorship and loss:

Joseph Craig of Mars Hill

As a truck driver, 36-year-old Joseph Craig knew that being tired at the end of the day way just part of the job. He shrugged off his growing fatigue as nothing, but he couldn’t imagine how wrong he was.

“During Labor Day weekend of 1994, I was basically hauled out of the truck and sent to the ER,” remembers Joe.

Joe had no idea that his spleen was about to explode. He knew his health wasn’t perfect; after having his biometrics checked at a health fair he was told to immediately see a doctor. The problem was, except for being tired, he felt fine.

Dr. Roger Pelli, who worked in TAMC’s emergency department at the time, figured out what was wrong with Joe.

“My white blood cell count was extremely high,” said Joe. “After a few more blood tests, Dr. Pelli told me I had leukemia.”

Joe was sent to Dana-Farber Cancer Institute in Boston for further analysis and treatment. His spleen needed to be brought back to a normal state before treatment could begin.

“I found myself trying to figure out how this happened to me,” said Joe. “You never think it could be you.”

Before a bone marrow donor match had been found for Joe, he had to take medication to keep his white blood cell count under control and he needed blood transfusions to keep his red blood cell count up. He had become anemic and had a long way to go before he would be back to his old self.

For three long years, Joe waited for the phone to ring to tell him a match had been found. The day he got the news was a day he will never forget.

“I was told a woman in Long Island was a match and would happily donate to me,” said Joe. “There are no words to describe how grateful I am.”

In Boston, Joe received blood transfusions and other treatments until his health reached a point where he could withstand chemotherapy and total body radiation. Chemo and radiation lasted for two weeks and then he was allowed to receive his transplant.

Joe had his bone marrow transplant in 1997 in Boston and the entire ordeal ended up being a three months process.

“They had to check my platelets every day and monitor me very closely,” he said.

Once Joe was allowed to head home, his care was transferred to Dr. Ronald Rohe at TAMC’s Aroostook Cancer Care. Joe followed up with Dr. Rohe annually and has been cancer-free since his transplant.

Joe did have a health scare in early 2014 when he came down with pneumonia. The disease caused his blood cell counts to go haywire, and he required extensive monitoring until things normalized.

“I had started swelling up; nothing felt right,” said Joe. “Dr. Rohe kept me in the hospital for a few weeks, but in the end, I leveled out and was allowed to go home.”

“You don’t realize how much you value your health until you don’t have it,” said Joe. “I do my best to keep moving and I refuse to lose.”

Wayne Harris of Washburn

“I woke up one Monday morning and didn’t feel right,” remembers Wayne Harris of Washburn. “I coughed up blood, but went back to bed as I was exhausted. When my fiancée, Debbie, got home from work I had her take me to TAMC’s emergency room.”

Wayne was convinced he had pneumonia and, at 53, he knew he needed to have it checked out.

“By the fourth chest X-ray, I knew they had found something besides pneumonia,” said Wayne.

He had been experiencing pain behind his left shoulder that had gradually increased over several months. Due to his job at the mill, he thought it was simply a repetitive-motion injury.

“When they told me I had cancer, I was shocked,” remembers Wayne. “But I simply asked them where do we go from here? How do I beat this?”

Wayne was diagnosed with small cell lung cancer, a very aggressive form of cancer. He was told by his oncologist that if he had not come down with pneumonia, he may not have caught the cancer in time.

“I never doubted that I would fight it,” said Wayne. “I have every intention of being a survivor.”

Immediately after his arrival at the emergency room, Wayne had been admitted to the hospital. They had found a blood clot that was about to enter his heart. He was given blood thinners and sent to Bangor to determine what his next course of action would be for the clot. Due to the proximity to his heart, they could not operate, but instead tried to treat it with medication. They were successful in reducing the size of it so that it was no longer a threat to Wayne.

“So many things had run through my mind during that time,” said Wayne. “Are my affairs in order? Is this the end? Your brain doesn’t turn off and sleep does not come easily. I think I got five to six hours of sleep that first week.”

After getting the pneumonia and blood clot under control, Wayne could finally begin his aggressive radiation and chemotherapy treatments to reduce the size of the tumor.

“I had to have radiation for 30 days straight,” he said. “I am so glad I could do that right here at Aroostook Cancer Care in Presque Isle. I couldn’t imagine being away from home while being treated for cancer. I could sleep in my own bed every night. That matters.”

Wayne had six rounds of chemo while he was undergoing radiation treatment, which was physically taxing on him.

“I couldn’t work, I couldn’t even stay awake during the treatment,” said Wayne. “It was not something I would ever want to do again, yet I’m glad I did it.”

Wayne’s family and friends stepped up to support him and Debbie with words of encouragement and helping out in any way they could.

“Without them, this would have been impossible,” he said.” They give you the drive to overcome anything.”

As of Wayne’s last CT scan, the tumor can no longer be seen. As a preventative measure, he had had radiation to his brain as his specific type of lung cancer can spread to the brain next.

“It reduced my chances of it spreading quite a bit,” he said. “Those odds of success made it worth it.”

Wayne experienced painful acid reflux and total hair loss, but it was a fluke side effect that scared him the most. During his radiation, part of his pericardium became blocked and was filling up with blood. He had to be flown to Bangor to have it drained immediately.

“I had a lymph node filled up with dead cancer cells as well,” remembers Wayne. “It felt like one thing after another, but yet here I stand.”

While Wayne no longer needs treatments, he continues with follow-up care such as annual CT scans and bloodwork. He regularly sees Dr. Arjun Sood at Aroostook Cancer Care so his care can be adjusted quickly if needed.

“In October 2014 we went to Kentucky, “said Wayne. “We’re doing our best to enjoy life. This is my second chance and I’m going to make the most of it!”

Karen Lavoie of Madawaska

“In 2012, I had been having really bad stomach pains and my provider sent me for an ultrasound,” remembers Karen Lavoie of Madawaska. “They found that I had gall stones, but they saw something else that prompted them to send me for an MRI. That’s when they discovered I had ovarian cancer.”

Ovarian cancer, often called the Silent Killer by the medical community, because women often attribute the symptoms to other health matters.

“They had sent my results to an oncologist in Bangor, but she didn’t want to handle my case, so they sent them to a specialist in Scarborough,” said Karen. “In two weeks I had my surgery. They performed a full hysterectomy and found that the cancer was contained in a tumor.”

The tumor had been small when they found it on the MRI, but in the two weeks before they took it out it had grown rapidly.

“When they did the surgery they really had to work to get it out without rupturing the tumor or the cancer cells could have spread,” said Karen. “It had spread to some fatty tissue but they removed that as well as 49 lymph nodes.”

The week Karen came home from surgery, her co-workers, family and friends brought her supper every night for two weeks.

“That was amazing,” Karen said. “I didn’t have to worry about feeding the family. It was one less stress I had to deal with.”

Six weeks later Karen started chemotherapy in Scarborough. According to her oncologist, her type of ovarian cancer would have come back without chemo. For 18 weeks, Karen had to travel to Scarborough for a day of chemo.

“Why am I not getting a break? I had wondered,” said Karen. “I guess we did a lower dose so that’s why I got it every week. I ended up only missing one week due to my white blood cell count, which is quite good considering.”

At the beginning, Karen drove herself down to treatment and then family starting stepping in to help drive. With the fatigue that Karen was beginning to experience, it was getting difficult to drive to Scarborough and back.

“After a few weeks, I worked with Patient Airlift Services (PALS),” said Karen. “They would pick me up and drop me off – same day most times. I don’t think I could have done it without them. You’re just so tired.”

A friend suggested that Karen drink Gatorade to help with the fatigue associated with chemo and it worked. She did lose her hair during treatment, but because she had such thick hair to begin with, no one knew. She simply got creative with covering it up.

“I had a lot of hair, but I never cut it before treatment like a lot of people do,” said Karen. “As I was losing it, I would put it in a ponytail and wear a hat – no one knew.  That worked for a while until most of my hair was gone. Then I wore I really great wig that looked so much like my natural hair.”

At the last treatment, Karen’s oncologist found that she had a cyst that had to be drained.  They inserted a drain which helped her start to feel better quite quickly, but then it became infected. She was put on antibiotics and once they began to fight the infection, she finally felt good again.

“Once all of that was dealt with, I only had to return to my oncologist every three months for a check-up,” Karen said. “Starting this summer, I’ll only have to go see him every six months.”

When Karen was first diagnosed, she took a leave of absence from her job and after treatment she slowly eased back in. She had to try to avoid interacting with the public due to her weakened immune system, but her employer helped her work around any issues that might crop up.

“They were so good to me, I’m very grateful,” said Karen. “I had family and friends who helped and accommodated me and that really helps you heal. I think it’s important that people don’t get discouraged. I met a lot of people who were diagnosed with terminal cancer. One of them has lived for over three years when he was only given six months. Technology is changing and cures happen every day. Don’t give up.”

Mike Theriault of Presque Isle

Life for Michael Theriault was going as planned until December 2013. He had been working outside his house when he developed a nose bleed. He rarely had them, so he found it odd, but it was the fact that his nose would not stop bleeding that truly made him worry.

“I went to the emergency room after we couldn’t get it to stop,” remembers Michael. “The doctors tried everything, but I was back in the ER less than two days later because it was still going.”

Dr. John Beaulieu, of TAMC’s emergency department ordered several test for Michael, one of which was a chest X-ray. The X-ray revealed that he had pneumonia and he was then hospitalized for a week while they got his health under control.

“His primary care physician wanted a follow-up X-ray three months later and that is when a spot was discovered in his right upper lung,” said Carole Olore, RN, one of Michael’s sisters.

Michael was sent for a bronchoscopy and PET scan to confirm his diagnosis of Stage III non small-cell lung cancer. His treatment started in May of 2014 and lasted until that October. During that time he underwent radiation and chemotherapy sessions at TAMC Aroostook Cancer Care.

During his treatment, Michael had days when he was quite dizzy and nauseated, but one would never know it. Michael’s family couldn’t believe his attitude about his ordeal: he never complained or said why me. He simply accepted that he had work to do to get well, and he pushed through.

“I had been a longtime smoker and quit cold turkey nine years ago,” said Michael. “When I’m determined about something, I get it done.”

“On December 23, 2014 we were informed that his cancer was inactive,” said Carole. “That was the best gift ever!”

Michael attributes a great deal of his success to his supportive family. His sister Carole, went to every appointment, every therapy session Michael had except for one that she had to do by phone. His wife Nancy, was a huge part of his emotional support team.

“If I didn’t drink enough water or do what I was supposed to do, one of them would call the other and gang up on me,” said Michael. “They truly took care of me.”

“I am so proud of my brother and all that he did to get better,” said Carole. “Frame of mind and positivity really do help to get you through a cancer diagnosis.”

Michael and his family try to remind others that having a cancer diagnosis is not easy to go through no matter what age you are. The best advice is to stay informed and trust your instincts. Help is out there. You can’t change what is in the past, but you can change the future. Continue everyday activities as much as possible, have an open mind and be positive.

“We talk on a daily basis and the conversation always ends with I love you,” said Carole. “Life truly is too short and one never knows what the next chapter writes.”

Larry Kingsbury of Bridgewater

“It began with three straight days of headaches and dizziness,” said Denise, Larry’s wife. “We thought it was an ear infection so we went to the emergency room.”

The attending physician sent Larry for imaging studies which revealed brain lesions. He was transferred to EMMC and they found that this had all started with lung cancer.

“Even with his poor prognosis, Larry was determined to fight in order to give hope to his family,” said Denise.

Larry began treatment at TAMC’s Aroostook Cancer Care under the supervision of Dr. Vatsala Kirtani. Her goal was to get him as much time with his family as possible, though the hope for a cure was slim.

“The treatments provided hope for him, hope for his family, hope for a time, and hope for cure,” said Denise. “Whatever he wanted to try, whatever he wanted to do, we were going to try it.”

Larry began with two weeks of whole brain radiation and then went for a PET scan in Bangor. He then began chemotherapy for the lung cancer, which was working. In October he had more double-vision and headaches and scans found that he had more lesions on the brain. His oncologist changed his medication and it seemed to work, but then it was discovered that the lung cancer had accelerated.

The next course of action was radiation to his right lung for 12 treatments. Larry’s right lung had collapsed and filled with fluid which he had drained the day before Christmas after his radiation.

“Though there was a high risk of developing  seizures, uncontrollable pain, and cognitive impairment, Larry wished to remain at home,” said Denise. “With the support of his family, we were able to make that happen for him.”

“The VA lists Agent Orange exposure when he was in Vietnam as a presumptive cause of his cancer,” said Denise. “Dr. Kirtland felt it was a factor in the aggressiveness of his cancer.”

Though his health was rapidly declining, Larry wanted to have as normal a Christmas as possible. Never thinking of himself, he was determined to maintain the family Christmas traditions for the sake of his family.

Larry made it through the hustle and bustle of Christmas day, seeing all of his children and their children, before getting tired and going to bed. As Denise helped him to bed, she realized that Larry was fading fast. She managed to call together as much of the family together as possible to be with him when he passed.

“Everyone who knew Larry liked him,” said Denise. “He was adored by his family and loved by his friends. He always put others first and tried to do his best by them. I have letters from a friend he made in Viet Nam and his thanks to him for saving his life.”

Over 300 people attended Larry’s funeral. He is remembered for his courage, determination, and his compassion. Larry fought for as long as he could so he could spend the time he had left with those who mattered most and their lives are richer for it. Even though he knew he couldn’t win his war on cancer, Larry made sure to give it the fight of his life. He never complained or said “why me?” He simply said, “It is what it is,” and showed his family what courage really looked like.

Provider provides more than cancer care

When facing a cancer diagnosis, few people have the insight to understand what patients and their loved ones go through more than the providers who share the journey alongside them. Sometimes the doctors and nurses who care for cancer patients are fortunate to share in the happy moments when battles are won, but often the struggle against the vicious disease brings frustration and tears at various stages. Yet, somehow, these providers wake up each morning determined to make a difference in someone’s life, and very often, that’s just what they do.

Such is the case with Denise Johnson, an RN/BSN at Aroostook Cancer Care. Johnson, who has been a nurse since 1983, has spent the last eight years working with oncology patients. She came to oncology well-prepared to work with cancer patients and their loved ones, as her most recent experience was working in dialysis, where patients and families are also seen frequently, she has also worked in many other areas of nursing.  She was aware of the emotional toll the job would entail, but she also knew that cancer care was an area of medicine in need of special people.

When Johnson was making her decision to move to oncology, cancer seemed to be everywhere she turned. “Just the prevalence of cancer – everyone I talked to knew at least one person who has had cancer or was going through treatments. The prevalence got me thinking about what I could do with my years of experience. I could apply all that I’d learned to any given specialty, but knowing the need of caregivers for cancer patients, that helped me make my decision because I’d be able to help both the cancer patient and their caregivers.”

In February of 2013, Tom Clukey, owner of Clukey’s Auto Supply, received a diagnosis of small cell lung cancer and bone cancer. A few months later, he lost his battle. His wife, Gail, was his primary caregiver at home, and she remembers the overwhelming changes his illness brought into their otherwise normal and busy lives.

“It was hard to see him go through this. He was a very energetic businessman who didn’t sit still for two seconds. To see the cancer take him over was difficult to watch,” she said.

When Tom was first diagnosed, Gail said they thought they had time, and they were prepared to fight. They went to the Dana Farber Cancer Institute, but his decline in health was so fast, that there was little time to adjust to anything. Tom was adamant that he receive his care at home, so they started going to Aroostook Cancer Care for treatments, and that’s where the couple met Johnson. While Gail worked to keep their business going, she relied heavily on the providers at Aroostook Cancer Care to offer her husband not only top notch care, but also something more than just medical care – companionship and positive energy.

“Denise made him smile. He really enjoyed talking to her,” said Gail. “When I picked him up and we were on our way home, he’d tell me about his day. She was bubbly and friendly, and that’s how he was. I think he connected with Denise because they were alike.”

Johnson says the relationship between the providers and patients at Aroostook Cancer Care is more symbiotic than anything. Each relies on the other for support and encouragement. She remembers her connection with Tom well.

“I remember that he always had a positive attitude when he came in. He always had a smile or a smirk. He was always talking to the other patients, very polite, very funny. He made us laugh. He was always willing to speak to other cancer patients, giving them encouragement despite all he was going through. We help them, but they also help us. They help us get through the day with their positive attitudes and their willingness to continue forward with their treatments regardless of how badly they might feel on a given day,” said Johnson.

Gail remembers how drastically their life changed when her husband went from being a business owner to being a cancer patient. Tom tried to continue working for as long as possible, but his treatments made him tired. Between Gail and many reliable friends, they somehow managed. Their lives changed in so many ways that some people would take for granted.

Not only was watching her husband go through this and feeling helpless difficult, but Gail took on added responsibility at work and handled all of the family matters, as well, all while balancing her time with her husband and worrying about his care. Johnson somehow knew that Tom’s cancer was hard on his wife, and she made a point to be there for Gail as much as she was for Tom.

“I look back now and I really don’t know how I did it. You totally remove yourself, you don’t think about yourself at all when you go through those times,” said Gail, recalling a time when she needed strength and Johnson was there for her. “I remember one day something had happened and we ended up at Aroostook Cancer Care unexpectedly, and she was right there, getting him a comfortable chair, making sure he was okay. She gave me a lot of information, set me at ease, and told me what to give him to eat, mentioning little things.”

That reassurance and support was crucial to both Gail and Tom at that time.

“I love my job and I think that helps, that each day I go home feeling like I helped several people through that day, and tomorrow’s a new day and I’ll be there to help cancer patients through another day. Looking forward to each day helps, too. I feel that I do make a difference, every day. Their caregivers are such big parts of their lives. I think being that person who is able to help both patient and caregiver is very rewarding to me. When the prognosis may not be so positive, just dealing with providing support to the family and the caregivers is a very difficult part, but it’s also a very rewarding part,” said Johnson.

Johnson’s job, like other cancer care providers, is complex and involves far more than delivering chemotherapy treatments. She reviews patients’ instructions, manages their treatments and monitors their progress, submits pharmacy orders, helps them adjust to their chemo treatments and ensures that patients receive the care they require. Above and beyond all of that, cancer care nurses ensure that the patients have access to all of the supports and resources available to them through this critical time in their life. This help extends to the family, and sometimes, the nurses even embody the support and encouragement the patients or families need.

“We try to provide emotional support, but do what we can to help them through this very emotional time in their lives,” said Johnson. “The most rewarding part is seeing positive results and people responding to their chemotherapy and feeling better. For instance, a lung cancer patient who is very short of breath and can barely breathe, sometimes even after one treatment, they have relief of their symptoms.”

It’s not always good news, though.

When Tom passed away, Gail thought she might not see Johnson again. After all, her frequent visits to Aroostook Cancer Care were at an end, and they each had lives to live and jobs to do. But Johnson’s connection with Tom, and her caring nature that extended beyond the patient to his family, keeps Gail in her mind and heart.

“You wonder if you’ll ever see these people again. I was so shocked when at Tom’s funeral, I looked up and there was Denise. Every year, I participate in Lights of Life, and every year Denise brings her donation right to me personally,” said Gail. “She’s a positive, very caring, sentimental woman, who I think is really in her right field because she does have that compassion for the patients and for the caregiver. You can definitely sense that when you’re around her. She’s really funny. I love her laugh.”

As Johnson and other cancer care providers see patients and their families each day, they become, in a way, an extended family member. They share in the joys and triumphs as well as in the tears and pain of those for whom they care. Still, as emotional as the job may be, it’s who Johnson and others like her are, and she knows she would have it no other way.

“It’s very difficult, but fortunately, we have an awesome team at Aroostook Cancer Care. Oncology is a very rewarding area of nursing, and the population of our patients, I can’t stress enough how amazing these patients and caregivers are. They get through a very difficult time in their lives, probably the most diff times in some of their lives. It’s an amazing group of patients that we have. It’s an awesome area of nursing to work and truly rewarding,” said Johnson.