Thrive: Survivorship Digital Magazine, Vol. 1, No. 4

Thrive

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ThriveContent and Editorial Team

We hope you enjoy the fall edition of our quarterly Survivorship digital magazine, Thrive. It is hard to believe we have been in existence for a year’s worth of editions already! We hope you’ll click here to signup for future editions in 2024. This edition has a special focus on breast, lung, and pancreatic cancer awareness.

If you have any questions on our content, or ideas for articles in upcoming editions, please contact Amy Litterini at amy.litterini@mainehealth.org.

Amy Litterini, PT, DPT, ProgramManagerofSurvivorship, MaineHealthCancerCareNetwork

Laurie Hyndman BreastCancerSurvivor, Co-chairPatientand FamilyAdvisoryCouncil

Pat Hager, MFA Freelance Writer and Editor

Chapter 1 Survivor to Survivor

Meet Lynn…….5

Survivors Giving Back Debbie…10

Jane…13

Chapter 2 Prevention, Monitoring & Testing Veterans and Cancer Risk…15

Genetic Counselor Awareness…18

Lung Cancer Screening…20

Chapter 3 Assessment and Treatment

Breast Surgery Technology…25

Clinical Nutrition…26

In this Issue

Chapter 4 Care Coordination and Planning Cancer Survivorship Act…28

Working Through Treatment…29

Chapter 5 Health Promotion

Sleep and Health…31

Hearty Soup…32

Chapter 6 Network News

News from our Partners…33

Chapter 7 Survivorship Resources

Survivroship Resources Guide…45

American Cancer Society…46

Making Strides…48

Teal Time Event…49

Cactus Cancer Society…50

Calednar………52

Archive editions…53

“Lifestarts overagain whenitgets crispinthe fall.”

~ F. Scott Fitzgerald

Meet Lynn

Pancreatic Cancer Survivor Lynn Leclerc at the summit of Acadia Mountain

Meet Lynn

Where to begin? I was diagnosed with pancreatic cancer on March 15, 2015. I am supposed to be dead, my prognosis at the time was 2 ½ years. Despite that fact, I was a long time distance runner, yoga instructor and honestly pretty good cook. My physician told me it did not matter. Fate was Fate. I honestly could not believe someone like me who ran nearly every day, did yoga, practiced meditation, and ate well could be experiencing this.

Honestly it seemed surreal!

One day, I was out running and felt a discomfort radiating from mid abdomen to my back on the right side. After running I always did yoga before leaving for work. The discomfort kept surfacing, so I decided to call my doctor who advised me to get to the Emergency Department (ED). He called ahead and ordered a CT scan and advised me to go NOW. So looking normal I entered the ED, no blood, no urgent need so I sat for hours. Finally at 7:30pm I got the scan. Curiously I was not upset as I watched others being evaluated, I felt fine; until two doctors entered the room and told me I had pancreatic cancer. I was all alone, my husband was traveling for work, my son was working as a transporter and stopped by to ask

what I was doing there, at that time I had no idea.

My first survivor advice is to trustyourown intuition . They wanted me to see a physician they had chosen, and I politely told them I wanted a different doctor. Then they told me they were admitting me, and I politely told them I was going home to speak with my family and they could arrange a surgical appointment ASAP. My favorite surgeon happened to have an open appointment at 3pm the next day, so I said “sold!” (trust your own intuition). I was an oncology case manager, so I admit to having an advantage; but, the likelihood of an open appointment with that surgeon is divine providence.

The second lesson is: havefaithinsomething biggerthanyourself.I know it is political suicide to talk about faith in the medical profession, but without it I honestly feel I wound not be here today. Now having faith does not mean you will live like I did, but I honestly believe faith heals something within us that is broken. Maybe it is a broken heart, a deep feeling of unworthiness, a sense of inability to cope with life. Faith always heals in some way if you are open to it. I do believe the universe is for me not against me, and that is what cancer taught me.

The third lesson cancer taught me is: lifeisnot alwayseasy;nofairytales.My husband was suffering from a disease called myotonic dystrophy, so I carried the insurance. I worked full-time through my treatment, except one Friday afternoon when my blood draw indicated I had an absolute neutrophil count (ANC) of 0.0; so, no chemo and they sent me home.

“Have faith in something bigger than yourself…”

Now, working full-time was not easy, and looking back over it I realize it was not possible to do. There is an old Irish saying, ‘the will of God will never take you where the grace of God will not protect you’. I believe this to be true, which brings me to the fourth thing cancer taught me: Begrateful,andacceptevery kindnessasagift . I wrote thank you notes and posted cards in my office nearly every day. When I was so tired I did not think I could take another step, someone would hold a door open for me and as tears welled up in my eyes I knew that person was a gift; and it may not have helped my fatigue, but it solidified my faith, and for that I am grateful.

Now my experience sounds very Pollyannaish, but I can assure you I swore a lot, and I mean A LOT, especially when I was alone in my car. And yes, I still did run, very slowly, but I went out every morning after being cleared by surgery with my abdominal binder on and I walked/ran my favorite route as best as I could sometimes swearing thru the whole thing; it was not pretty. So honestly, the fifth lesson I learned is: neverdenyyouremotions . Feel what you feel, rage, let it out. If your God is not big enough to handle your anger, in my humble opinion, you’ve got the wrong God. There is lots of research now about how the body remembers life events, and I am here to say no truer words were ever written. Get it out with a friend, writing a journal, screaming at the sky, whatever works…get it out!

As part of the fifth lesson, I also learned eventually when the anger subsided, because I did not try to bury it, I eventually got to the point where I decided to take what energy I did have and turn it to the positive. Every week during my treatment cycles, I would buy myself 20 long stemmed yellow roses. They had to be fragrant, because I would smell those roses going into my office and coming out of it. Before long, I noticed doctors

stopping by to smell my roses, and nurses, and MA’s, asking if they could give one of my roses to a patient in need. By Friday when I left for chemo, the roses were gone and sometimes the vase, too! I admit, this was an expensive habit; somewhere along the line I realized I was worth it, absolutely unequivocally, worth it.

The sixth lesson is to: knowyoumatterand areworthdeepself-love,alsotorealizesois everyoneelse . Now, that is the hard part. Now, full disclosure, there were days when I felt God or the universe pick your own label for loving kindness in life. I would feel as if God had truly abandoned me. “What a crock!” I would say to myself, as the dark days swept over me. Then, somehow or someone would shelter me in loving kindness. I use the term shelter because it always felt like a warm hug, a prayer shawl placed on my shoulders, a hug from a stranger. I remember one day sobbing my eyes out in the chapel. I had taken money out of my retirement account to pay the mortgage, and a new surgeon entered the chapel and asked if he could pray with me. I sobbed as he led me in praying and then hugged me. He was the new resident for my surgeon, the perfect gift that day.

The sixth lesson is: letyourfriendsin . I know I was truly blessed to have two incredible friends who walked this journey with me. Nearly every Friday, one or both of them would sit with me during my chemo, insisting I watch grumpy cats on an I-Pad and eat chocolate. They were my rocks, the anchor of my soul, and the greatest blessing someone could have in

“Be grateful, and accept every kindness as a gift.”

that moment. Let people in, tell them what is happening, and most importantly eat chocolate. If because of close proximity in treatment rooms support cannot be physically present, make friends with your fellow patients if possible. And always ask people to pray for you, or send good vibes, whatever works for you during treatments. There are so many others who write about the interconnectedness of all humans. I believe that to be true. Unfortunately, we live in a world where we are indoctrinated to differences and enemies to make ourselves feel safe. To believe all people are good is ludicrous, but trusting that some are is essential.

The seventh lesson is: toyourownselfbe true, like the line from Hamlet. If you have ever read Benne Brown or listened to her podcasts, she has a talk on YouTube, called “Do Not Negotiate Who You Are”. Had I not listened to that talk before writing this, I would have written something entirely different.

The eight lesson is to: dreambig . My oncologist knew I loved to run, and I mean loved. He would always cheer me on during the dark days telling me we would run a marathon together. Now he is 6’3” tall, and runs a sub 6minute mile. I do love him dearly, but at my best, 8-minute miles were possible; now, 12 to 14 minutes were my norm. But I never gave up; I was brave. On the day I was predicted to be dead, I ran the Rock and Roll half marathon in Philadelphia. I ran the first ever Rock and Roll marathon in San Diego, and the first ever half marathon in Virginia Beach. So, I am proud to say I am one of 737 people who rocked both

coasts! I am understandably proud of that middle of the pack runner that I am. But, nothing made me prouder than that half marathon in Philadelphia. I ran it alone because I knew I would need to take my time. I had run Jay’s Run in PA with my radiation oncologist and cried the whole way, realizing how much of my running ability I had lost. So, with my husband who was having difficulty walking, and my son, I went to the race. My husband was sitting near the finish line with my son caring for him. I ran

wearing my purple cape one of the doctors made for me with pancreatic survivor in shiny silver letters across the top, with the words ‘thank you’ and the names of every physician, nurse, friend, family member, and associate of mine at the hospital signing my cape It was not easy, but I ran About half way through the race I ran past a man in a huge

Lynnrunningahalfmarathoninherpurple capeforpancreaticcancerawareness

“To your own self be true…”

sand chair who had glioblastoma; his family, parents, wife, brothers, sister, children, aunts, and uncles, everybody running/walking along side of his chair, his brother pushing. As I ran past, they started yelling and cheering me on, another gift, I still cry remembering it. My ninth and final lesson is: tolaughat yourselfasoftenandasdeeplyaspossible . One day in particular, I was really struggling at work with radiation burns in my GI tract, so I called my oncologist and he said go to the pharmacy and get a bottle of Maalox. So, I ran down and they handed me the bottle in a brown paper bag. I hopped on that elevator, and chugged that Maalox in the brown paper bag. Then, I realized there were cameras in the elevator, and security saw everything I was doing, so I pulled the Maalox out of the brown paper bag and showed the camera what I had.

I was laughing so hard by the time I stepped off that elevator; everyone smiled at me not sure what else to do, another gift.

In closing, I work as a nurse navigator at Pen Bay because I have seen the fear I see in others in my own face, and I am privileged to work with a group of people who genuinely care for and treat patients with loving kindness. I am not following the party line or trying to fit in, this is exactly what I see in the cancer care community here at Pen Bay, and also at Waldo County General Hospital. Having watched Dr. Inhorn with patients solidified my desire to work at Pen Bay. Because whether or not he would identify with my description of him or not, his presence and ability to convey information to patients is exceptional. We are so fortunate to have a doctor and a group of nurses and MA’s and front desk staff, managers, triage nurses, and schedulers here who really, truly care about patients. They are the real deal. I am new to Pen Bay’s navigator role, but intend with all my heart to do the best job I can for the patients who come here. To say that at times as I am leaning I will not make mistakes is ludicrous; we all learn in the same way along life’s journey. We make mistakes; if we are smart, we own them and move on. May we all move on together. Blessings to all of you who have read my story. May your days be filled with kindness and love. Please always remember to hold doors open for people; you never know what they are living through.

Above:Lynnatthefinishline

“Dream big…”

Survivors Giving Back: IAmOneStrongCowgirl

By Laurie Hyndman

When Debbie Cupo puts her mind to something, get out of the way. She is a bundle of energy, determination, and fortitude. She is an entrepreneur, rancher, farmer, successful businesswoman, great friend to many and can accomplish just about anything. We have known each other for almost 30 years, having met doing something we both love – playing golf.

something more profound. We were both breast cancer survivors. While I was 14 years out from my diagnosis, Debbie was just finishing her treatment. While our experiences were unique to each of us, the emotional impact was equally challenging and we have both found positive ways to channel that.

A diagnosis of cancer puts you into a tailspin. The shock of the news, many appointments with various providers, the disruption to your life and your loved ones, and the actual treatment are overwhelming. Getting through active treatment becomes

In February, 2022, Debbie reached out and asked me to join her for lunch. Not only did we share our love of golf, but now we shared your focus and your care team becomes just that –your team. And then, you are through with active treatment and that safety net slips away. You are now called a survivor, an unfamiliar role. What do I do now?

On that day Debbie’s emotions were raw, she was still recovering from active treatment, her hair was starting to peak out of her cap, and she was clearly processing this life-changing experience. Beneath that raw emotion was clearly incredibly strong resolve – she wanted to give back to the incredible medical team that cared for her throughout her journey – and she had an idea.

In the days right after her diagnosis when there

down from Skowhegan or wherever for treatment, then going back home, taking care of family, normal everyday life.”

It was at this point her resolve led her to support her care team at The Breast Care Center and those receiving care. “What can I do to give back? Well, I love golf, so let’s have a golf tournament.” And that’s what we ultimately brainstormed about on that day in February. Not only had she decided to have one golf tournament, she was going to have two! One was going to be a women’s tournament and the other co-ed, and the funds were going to

were many meetings with physicians and nurse navigators, Debbie realized that “These people are really going to take care of me…They were so unconditional in making you feel that you’re going to get through this.” Then during her treatment, she met other patients from all walks of life and from all over Maine. She marveled at their attitudes and their fortitude. “The people I met who were also in treatment made such a big impact on me. These were people, everyday people…coming go toward patients’ needs and support.

She walked me through all of her plans, every detail. I was breathless! They were already scheduled for that summer! All she asked me to do was play in the tournaments and speak about my journey, my role on the Patient and Family Advisory Council at MMC, and my involvement at The Breast Care Center. That was easy! I marveled that this woman, devastated by her diagnosis and treatment, was channeling her emotions to give back to others.

Both tournaments were very successful and there was not one detail that was missed. Debbie, almost singlehandedly, recruited teams, convinced Continued next

DebbieCupo

I Am One Strong Cowgirl

(continued)

businesses to sponsor the events, and made sure every participant had a great time. She raised awareness for the incredible care available to Mainers right here in Maine. And in two years she has raised over $350,000, and she is already thinking about other ways she can raise funds for The Breast Care Center.

When we sat down earlier this month, Debbie and I talked about what it means to be a survivor. “Two years out, I’m a survivor and that is huge,” she shared. “You definitely need support. You think you are doing really good, then, uh-oh, I’m not doing good.” There are checkups, MRIs, blood tests, and that’s when the fear creeps back in. As Debbie said, there is residual trauma from the wait and the worry. It’s always stressful, yet the care team is still there. They understand where we are and provide incredible emotional and practical support every step of the way.

This influenced Debbie’s decision to direct this year’s proceeds from the tournaments to the newly established Survivorship Program. This program “is huge and it’s as big as active treatment. We need help with the emotional,

nutritional, and physical impacts that remain with us after active treatment.” This program provides that support and acknowledges that while we survived, it is an on-going journey, not only for us, but for our families.

Sharing our journeys with each other is also part of being a survivor. While our experiences are unique to us, there is much that we share in common. And we are both very grateful for the care we received from everyone at The Breast Care Center and for their continued support for us as survivors.

When I asked Debbie what she has learned from all of this, she said, “I am one strong cowgirl (chokes up). I knew I was strong, but I didn’t know I was this strong.” Then she wisely shared, “It’s a new day and nothing is going to be like yesterday. I’ll never be the same, but that’s ok, because I’m here.”

GOLF TOURNAMENTS RAISE OVER $100,000 FOR THE MAINEHEALTH CANCER CARE NETWORK!

The MaineHealth Cancer Care Network (MHCCN) is honored to have Deb Cupo as one of our champions!

Deb is a cancer survivor who combines her love for golf with her passion for improving cancer care for other Mainers. After her cancer diagnosis, she was grateful to her surgeon Dr. Elizabeth Desjardin and her entire care team within the MHCCN — and wanted to give back as well as pay it forward to those facing their own cancer experience.

In 2021, Deb started the annual Drive Fore the Cure golf tournament and gala to support essential investments in the MaineHealth Cancer Care Network’s ability to provide the highest level of care available for all people seeking care.

The community-building and fundraising success of the tournament and gala raised $130,000 in its inaugural year and inspired Deb and her co-organizers to continue. Proceeds from this year totaled $118,000!

“I could not have asked for a more talented and compassionate care team than the one that supported me through my cancer experience at Maine Medical Center and MaineHealth. Now more than a year since I finished active treatment, I’m honored to express my gratitude by giving back and providing essential resources for our outstanding cancer care teams at MHCCN!”

~ Debbie Cupo

To see photos from this year’s fun and successful event, please visit: www.driveforethecuremaine.com/2023-results

Survivors Giving Back

By Amy Litterini

Jane Brooks and her husband Rich (pictured right) stopped by the Maine Medical Center’s Breast Care Center in August to drop off two large bags of comfort pillows (below, right) for our post-operative breast cancer survivors. Married for 50 years, the Brooks say this project is in fact a team effort since Rich actually does go to the fabric shops with Jane!

Jane has a history of making comfort pillows, dating back to the 1970’s when she made them for the American Cancer Society’s Reach to Recovery program for breast cancer survivors in New Jersey. Now a breast cancer survivor herself as of January, 2023, she truly understands just how helpful these comfort pillows can be. She also makes drain pouches to comfortably hold drain bulbs from post-surgical drains.

Thank you Jane (and Rich!) for your thoughtful contribution to our survivors!

Prevention, monitoring and routine testing for new cancers, cancer recurrence, and/or late effects of cancer treatment

This quarter, we feature awareness of Veterans’ cancer care, genetic counselling, and the importance of breast and lung cancer screening.

s and Cancer Risk

By Amy Litterini, PT, DPT

According to the US Department of Veterans Affairs, while the percent of the US adult population of veterans is 6.6%, an estimated 11.2% of our Maine state residents have a history of military service. As we celebrate our veterans’ service and sacrifices this Veterans Day, the special considerations of cancer risk and cancer incidence among those who’ve served comes to mind. Due to the potential unique exposure to various chemical, environmental, occupational and warfare agent substances during military service, some veterans may have a higher risk for certain types of cancer. Substances such as Agent Orange, asbestos, mustard gas, PFAS chemicals and radiation are known to be potentially cancer-causing, as is environmental exposure to air pollutants such as burn pits, water contamination (e.g. Camp Lejeune) and some waste incinerators (e.g. the Naval Air Facility in Atsugi, Japan).

At the MaineHealth Cancer Care Network, we’re honored to care for our many veterans on a daily basis across our health system. Communicating with primary care providers about exposure risk factors is an important step. Receiving the necessary cancer screening and accessing routine medical visits are key to early detection and treatment. The VA has established a National Oncology Program specializing in veteran’s cancer care. The American Society for Clinical Oncology has published resources about cancer risk for veterans HERE, and for veterans with cancer HERE. Discuss your individual cancer risk and cancer screening protocol with your provider.

November 9th is Genetic Counselor Awareness Day

By Taylor Carter, MS, CGC

Genetic Counselor Awareness Day is dedicated to raise awareness and interest about genetic counselors in communities and institutions, and to help consumers understand the important and supportive roles of genetic counselors in health care.

What do genetic counselors do?

Genetic counselors are healthcare professionals with advanced training in medical genetics and psychosocial counseling who partner with patients seeking information about inherited conditions affecting them or their families. Genetic counselors work in a variety of specialties, including cancer, prenatal, and general/pediatric genetics. A genetic counselor works with patients and their providers to:

• Explore personal and family health history to better understand genetic risks

• Discuss the medical and emotional implications of genetic information

• Determine if genetic testing is appropriate for patients and their families

What is the genetic counselor’s role on the oncology team?

Cancer genetic counselors meet with patients who have a personal or strong family history of cancer to assess their medical and family history and discuss relevant genetic testing options. Some people have a hereditary cancer syndrome that makes them more susceptible to cancer. Genetic testing can help determine this, which provides individuals and their families with knowledge about their risk for cancer and guides future screening or management recommendations.

Who should consider genetic counseling for hereditary cancer syndromes?

Doctors often refer patients for cancer genetic counseling if they have one of the following “red flags” in their family history:

• Three relatives (related by blood) on the same side of the family with similar or related cancers

• Individual or a family member with two or more different cancers

• Individual or a family member with cancer at a younger age than expected (often less than age 50)

• Non-cancerous findings suggesting a recognized genetic condition (i.e., multiple colon polyps)

Continued next

Continued from previous

• A known cancer-related mutation in the family

• Rare cancers or cancer in the less commonly affected sex (e.g., male breast cancer, medullary thyroid cancer, pheochromocytoma)

In addition, all individuals with a personal history of triple negative breast cancer, metastatic prostate cancer, pancreatic cancer, or ovarian cancer, are eligible for genetic testing.

Talk to your doctor if you are interested in genetic counseling and testing.

Where can I find a genetic counselor?

MaineHealth has prenatal, pediatric/adult, and cancer genetic counselors. If you are interested in cancer genetic counseling, our MaineHealth cancer genetic counselors can be found at:

MMC Cancer Risk and Prevention Clinic, Located at 100 Campus Drive in Scarborough

Phone: 207-396-7270

For more information on genetic counseling or to find a genetic counselor near you, visit https://www.aboutgeneticcounselors.org/

Pictured above: Taylor Carter, MS, CGC; Jenna Albrecht, MSc, MSc, CGC; Luanna Buchanan, MS, CGC; Stephanie Sharp, MS, CGC; Ashley Kennes, MS, CGC; Lee Ecker, MS; Jeryl Erickson, MS; Joseph Pagliarulo, MS, CGC

MMC Lung Cancer Screening Program

By Snow Tardif, BSN, R.N., Manager, Lung Cancer Screening Program

Dr. Gary Hochheiser, Director of both Thoracic Surgery and the Lung Cancer Screening Program, was featured on the Channel 8 news. He addressed the newly expanded eligibility criteria for lung screening and discussed the importance of lung cancer screening to improve the likelihood of early detection as well as survival rate.

Dr. Hochheiser stated, “It actually has the best data for any screening out there”. One of our lung cancer screening patients was also featured on Channel 8 news and discussed his personal journey from screening to surgical intervention with Dr. Hochheiser, all completed within a month. You can view Dr. Hochheiser and hear about our patient’s journey here: Mainer says lung cancer screening saved his life (wmtw.com)

The Lung Screening Team, from L: Lori Newsome, Snow Tardif, and Jess Moore

Assessment & Treatment

Assessment and treatment of long term or late effects of cancer treatment

This quarter, we feature the advanced technology of our breast surgery techniques, as well as clinical nutrition.

Advanced Technology in Breast Imaging and Surgery

About Magseed®

The Magseed® marker is a tiny magnetic seed made from stainless steel which is used to accurately mark tumors or lymph nodes, allowing surgeons to detect and remove them as precisely as possible during surgery.

The Magseed® marker is widely approved for long-term implantation to mark tumors in any soft tissue. Once placed, it cannot be dislodged or damaged and can be detected by the Sentimag® magnetic probe with incredible precision. This helps to overcome surgical scheduling pressures and drastically improve the patient experience.

It has been studied more than any other non-radioactive seed marker, with over 10,000 patients involved in Magseed® clinical trials. With over 250,000 Magseed® procedures carried out in operating rooms across the world, it is quickly becoming the new global standard in breast surgery.

About Magtrace®

The Magtrace® lymphatic tracer is the world’s first, non-radioactive dual tracer for lymphatic mapping in patients with breast cancer. Made from just four ingredients, iron oxide, sugar, salt and water, Magtrace® provides a simple solution for breast cancer staging. Designed specifically for sentinel lymph node biopsies, this magnetic liquid provides a more accurate and efficient way to locate and remove tissue. Its long injection window is also opening up opportunities for more advanced techniques.

Now used in over 1,000 centers in more than 45 countries, Magtrace® has helped over 100,000 breast cancer patients access the best standard of breast cancer care across the world. In addition to Maine Medical Center, this technology is also currently available at Southern MaineHealth and Lincoln Health.

According to Maine Medical Center breast surgeon Dr. Paige Teller, “We were early adopters of Magtrace in the New England region. Magtrace has afforded us the opportunity to perform delayed sentinel lymph node biopsy in our patient population where appropriate, potentially reducing the risk of lymphedema and invasiveness of care.”

Magtrace®

Magseed®

Clinical Nutrition

NEEEDS: New England Enteral Exchange and Distribution Solution

By Pam Perkins, RD, CSO, LD, and Ashley Lazarz, RD, LD, Oncology

Dietitians, MaineHealth Cancer Care Network

During cancer treatment, some patients are unable to meet their nutritional needs by eating meals and drinking fluids. After discussion with their cancer care providers, these patients may have a feeding tube placed and receive a commercial formula via the tube for calories, protein, nutrients and fluid (called enteral feedings). Challenges with enteral feedings can include cost and access to the formulas. The NEEEDS program offers a solution to these challenges. The NEEEDS program accepts non-expired formula donations from patients and care givers when patients no longer require the formula. Formula can be picked up free of charge for patients who are starting or currently on enteral feedings and are experiencing challenges with cost and accessing formula. The type and amount of formula available varies based on the donations received.

The Mission of NEEEDS: To redistribute unused medical nutrition formula to patients in need.

1

For patients, caregivers and cancer care providers interested in learning more about the NEEEDS program, contact:

Wayside Food Programs

135 Walton Street, Portland, Maine 04013 207-775-4939

For more information about programs and volunteer opportunities:

Wayside Food Programs |

Fighting hunger and strengthening community (waysidemaine.org)

1. Oberholtzer, A. & Schilling, K. Leveraging community resources to develop NEEEDS (New England Enteral Exchange Distribution Solution), a local enteral exchange donation program. 2018 Oncology Nutrition Dietetic Practice Group Symposium Poster Presentations.

Care Coordination Planning

Care Coordination and planning includes communication and partnerships between the survivor and providers for ongoing survivorship care

This quarter, we feature the Cancer Survivorship Act and resources to support working during treatments

Comprehensive Cancer Survivorship Act

FromtheNationalCoalitionforCancerSurvivorship

In June, Representatives Debbie Wasserman Schultz (D-FL-25), Brian Fitzpatrick (RPA-1), and Mark DeSaulnier (D-CA-10) and Senators Amy Klobuchar (D-MN) and Ben Cardin (D-MD) reintroduced H.R. 4363/S.2213, the Comprehensive Cancer Survivorship Act (CCSA). This bipartisan legislation addresses the health of cancer survivors throughout the entire continuum of care – from diagnosis to active treatment and post-treatment – to improve survivorship, treatment, and transition for all survivors.

Care and the cancer journey do not end once active treatment ends, and survivors need lifelong support for their disease. To improve their quality of life and health outcomes, cancer survivors need resources to help monitor for these secondary cancers and late and long-term effects caused by their cancer treatment. Additionally, health care providers need resources to provide appropriate care for survivors throughout the entire continuum of care. The CCSA addresses the existing gaps in survivorship care and improve quality of care and navigation of health care systems for survivors, their loved ones, and their health care providers.

This summer, Representative Wasserman Schultz and Senator Klobuchar spoke at this year’s Cancer Policy and Advocacy Team (CPAT) Symposium before advocates headed to Capitol Hill to advocate for this important legislation. Representative Wasserman Schultz acknowledged the challenging work that lies ahead and called on all members of the cancer community to lend their voices to this collective effort.

This comprehensive legislation will provide coverage for care planning services to address transition to primary care; develop navigation services for survivorship; establish employment assistance grants for survivors, caregivers, and their families; provide education and awareness through resources for survivors and health care providers; ensure coverage for fertility preservation services; and require study of the existing reimbursement landscape and development of an alternative payment model, among many other things.

NEED TO WORK THROUGH TREATMENT? OR, TAKE TIME OFF? NOT SURE IF YOU CAN AFFORD TO?

Free,Online Conference

Learn about topics impacting the AYA cancer community:

• Dealing with side effects during & after treatment

• Taking time off & paying for it

• Disability insurance

• Health insurance

• Sharing your diagnosis

• And much more!

More FREE Help

Free one-on-one help

OCT 14

Register: TriageCancer.org/Conferences

Legal & Financial Navigation Program

Speak with a trained professional for practical tips on navigating work & cancer, disability insurance, & more.

Get help: TriageCancer.org/GetHelp

Practical Guide to Cancer Rights for Young Adults

Young adults with cancer face unique challenges – so we created a guide just for you.

Learn tips for navigating work and cancer.

Download your free copy: TriageCancer.org/CancerRightsGuides

Health Promotion

Health promotion includes strategies such as healthy eating, physical activity, and stress management in cancer survivorship

This quarter, we feature sleep health and fall recipes.

Sleep and Health: Improving Sleep Habits

Katherine Sharp, MD, MPH, Preventive Medicine and Internal Medicine

A good night’s sleep can have important effects on our emotional and physical health. Can you reflect on how you felt the next day after a sleepless night? Sleep impacts many aspects of our health including glucose control, insulin sensitivity, mood, behavior, obesity, regulating appetite, memory, cardiovascular health, immune system regulation and poor sleep is even linked to certain cancers. Improving our sleep habits can have a profound impact on our overall health.

It is important to monitor sleep behaviors and incorporate healthy sleep habits into our everyday routine. Sleep experts have determined that with as little as 2-3 nights of less than 6 hours of sleep per week for three months can be an indication that one has chronic insomnia. Approximately 20% of US adults average less than 6 hours of sleep per day! The recommended sleep duration for optimal health for adults 25 and older is 7-9 hours of sleep per night. Luckily, there are ways to improve sleep quality and duration.

To start, make sure you pay attention to what may be interfering with your sleep. Is it pain, anxiety, hunger, caffeine or difficulty sticking to a schedule? There are ways to get your circadian rhythm back on track. Sleep hygiene techniques can include sticking to a schedule even on the weekends, setting your room up for sleep, avoiding blue light at least one hour before bed, light exposure early in the day, avoiding caffeine in the afternoon, limiting naps during the day, adding in an exercise routine, mindfulness, meditation and relaxation before bed.

You can check out our sleep hygiene video for tips to incorporate into your sleep routine. Set one sleep hygiene goal to maintain for the next few weeks.

If you believe your sleep is a problem, please discuss your concerns with your provider.

Have a Hearty Fall: Chicken and White Bean Soup

A store-bought rotisserie chicken offers incredible versatility at mealtime. Here it makes a quick and flavorful “homemade” chicken soup. Instead of traditional noodles, this soup is made with protein-packed beans. Choose a rotisserie chicken with mild seasoning both plain and lemon-pepper work well. Adding the wings and some bones to the broth adds richer flavor. For a burst of green, add a few handfuls of baby spinach or 2 tablespoons chopped fresh parsley right before serving. For classic chicken noodle soup, substitute ½ cup of egg noodles for the beans.

Serves: 6 to 8

Prep time: 15 minutes or less

Total time: 1 hour or less

Ingredients

1 rotisserie chicken breast section or 3 cups chopped white chicken meat

1 tablespoon canola oil

3 carrots, sliced

2 celery stalks, sliced

1 onion, chopped

2 cups water

6 cups reduced–sodium chicken broth

1 (15-ounce) can Great Northern beans, rinsed and drained

Salt and freshly ground black pepper

Directions

Remove wings from chicken and reserve. Remove skin from breast and discard. Shred the meat from the breast and break off breastbones.

In a stockpot over medium heat, add oil. Sauté the carrots, celery, onion, chicken wings, and breastbones for 8 to 10 minutes, or until vegetables soften.

Add water and chicken broth and bring to a boil, stirring to combine. Reduce the heat, cover, and simmer for 15 to 20 minutes. Add beans and chicken meat and cook for 5 minutes. If too thick, add additional broth or water. Discard bones and wings before serving. Season with salt and pepper.

For the link and full nutrition information, clink HERE.

Network News

From Our Network Partners

• Franklin Memorial Hospital, Farmington

• LincolnHealth-Miles, Damariscotta

• MaineGeneral Medical Center, Augusta

• Maine Medical Center, Portland

• Memorial Hospital, North Conway, NH

• Mid Coast Hospital, Brunswick

• Pen Bay Medical Center, Rockport

• Southern Maine Health Care, Biddeford

• St. Mary’s Regional Medical Center, Lewiston

• Waldo County General Hospital, Belfast

• Western Maine Health, Norway

What’s New at Maine Medical Center

Breast Care Center Welcomes Navigation Team

My name is Jennifer Santiago and I am excited to join the Breast Care Center as a Nurse Navigator. I graduated from the University of New England in 2002 with my Bachelor’s degree in nursing. Initially, I worked in pediatrics, geriatrics and home hospice care. For the last five years, I have worked as a case manager on the medical oncology floor at Maine Medical Center. I am eager to continue my learning in the specialized field of breast cancer, and so glad to be a part of this team. I reside in Biddeford with my husband and five daughters. In my free time, I enjoy spending time with family doing beach walks, dancing, listening to music and hiking.

Hi there! I’m Ashley, Breast Oncology Patient Navigator at Maine Medical Center’s Breast Care Center. As a Patient Navigator, I serve as an ongoing source of support for patients as they go through one of the most challenging times of their lives. I coordinate care and initial office visits across medical disciplines to streamline cancer care delivery. I reinforce patient education about their specific diagnosis and treatment options. I help decrease barriers to care by assessing needs and linking patients with appropriate support and resources. Prior to stepping into this role as a navigator, I worked as a medical surgical nurse at Maine Medical Center in Portland, Maine. Following that, I began my journey at the Breast Care Center as a clinical nurse, and built a solid foundation of knowledge and experience in breast health. I have deeply enjoyed working alongside the spectacular and hardworking team at the Breast Care Center and caring for our amazing patients. I’m currently in the process of earning my Breast Care Nurse (CBCN) and oncology nurse (OCN) certifications, with a goal to obtain these credentials by early 2024. Outside of my nursing role, I love spending time with my partner and our rescue animals, and attending music festivals and comedy shows.

Jennifer Santiago, RN, BSN

Ashley Jardine, RN

The Harold Alfond Center for Cancer Care

'Never stop hoping' mantra keys Bonnie Collins’ cancer journey through diagnosis, treatment and recovery

Before July 2022, Bonnie Collins never thought she’d one day wear an inexpensive pink rubber bracelet that has far greater significance than its actual value. That was before the 20-year registered nurse and Master Gardener volunteer knew of a family history of breast cancer. It also was before she discovered a lump on her rib cage, under her arm.

“Being an experienced nurse, I didn’t panic and applied a heated rice pack for three weeks and it didn’t go away,” she said. “I realized then I needed to have it looked at.”

After a mammogram and ultrasound, a biopsy was needed. Unfortunately, it would be nine weeks before Bonnie

could have it in Bangor, close to where she lives, due to staffing and other issues. After deciding to call other sites, Bonnie spoke with MaineGeneral’s Breast Care Program staff and scheduled the biopsy in mid-September 2022. Four days later, she read “carcinoma” in her online patient portal results. “It was a complete shock and I started to feel dizzy because I was holding my breath and didn’t realize it,” she said.

Finding a treatment “home”

Bonnie and her husband Peter traveled to Dana-Farber Cancer Institute in Boston where they learned she had triple-negative breast cancer, an aggressive form with limited treatment options. As they traveled north afterward, they knew the financial and emotional costs of weekly treatments in Boston would be too great. Bonnie wanted treatment much closer to home – at the Harold Alfond Center for Cancer Care (HACCC). She called the center on their drive, learned they could take her as a patient and stopped in with her medical records.

“I walked in and it felt like I was home. That was the turning point in feeling I would get the care I needed,” she said. “Going there was the best decision I made. They treated me like they would treat their own family members – their mothers, sisters or daughters.”

Continued from previous

Bonnie received 16 chemotherapy treatments in the months that followed. After her last one, she vigorously rang the center’s milestone bell to celebrate the start of her life as a cancer survivor in remission.

Finding signs of hope all around her

Bonnie acknowledges that low points during her treatment sometimes stole her joy and challenged her will to keep fighting. Even during these dark moments, she still had hope. “I always hoped things would get better even when I didn’t feel well. There’s so much you don’t know, so you hope – a lot – for certain things – to see your next birthday or to become a nana someday. You hope your treatment will work or that you don’t get into a car accident traveling to an appointment during the winter. Cancer is tough for the patient and those closest to them. Seeing changes in your loved one going through chemotherapy – losing their hair and suffering from fatigue and brain fog – is difficult,” she added. “For the patient, it changes your outlook on life. Relationships and priorities change – quickly. Sunrises, sunsets and everything in between mean so much more. I don't take a day for granted and hope I have many more.”

Bonnie noted that being surrounded by people who offer optimism and support makes a difference. “My mom hugged me and said, ‘You be a warrior.’ And I feel like I was. I knew I was going to battle but I couldn’t do it alone,” she said. “I had an army of supporters – my husband and sons, my extended family, my friends and coworkers and the incredible HACCC care team. Hope was truly all around me.” And that pink bracelet mentioned earlier? It’s still on her wrist as a reminder and source of inspiration. “I hate it for what it represents – that I had cancer and I’m a cancer survivor,” she said. “But I also love it because it reminds me of how strong I needed to be. It gave me courage to hope for a brighter future and extra time.”

A day for those touched by cancer

As the 2023 marshal, Bonnie will share her story Oct. 7 at MaineGeneral’s Day of Hope at the Augusta Civic Center. The event is a day full of inspiration, celebration, education and fun for the whole family. It also is a time to rally around those whose lives have been touched by cancer and to raise funds through the Walk for Hope to support care provided at the HACCC. The walk is part of the day’s activities. The $10 cost per person includes access to an inspirational opening ceremony; the Walk for Hope; education events; cancer screenings; nutritious food samples and a Kids Zone, among other activities. While encouraged, fundraising is not required. Cancer patients, survivors and children under 12 are welcome at no cost.

In sharing her experience, Bonnie hopes it will bring strength to others.

“My advice is to not give up when you get a cancer diagnosis. Keep living your life and never stop hoping,” she said. “I hate cancer, but if sharing my journey makes it easier for someone else, I’m happy to do it.”

» Learn more about the Day of Hope

SMHC Earns Re-Accreditation by the National Accreditation Program for Breast Care Centers

SMHC’s accreditation by the National Accreditation Program for Breast Care Centers (NAPBC) has been renewed for 3 years. Care team members from SMHC and the MaineHealth Cancer Care Network successfully achieved reaccreditation following a rigorous site review by the NAPBC in June 2023.

The NAPBC is a quality program administered by the American College of Surgeons. Accreditation reflects SMHC’s compliance with evidence-based standards and performance measures for high quality, multidisciplinary, integrated and comprehensive breast care services. To achieve voluntary NAPBC accreditation, a breast center demonstrates compliance with the NAPBC standards that address a center’s leadership, clinical services, research, community outreach, professional education and quality improvement for patients. Patients receiving care at a NAPBC-accredited center also have access to information on clinical trials and new treatment options, genetic counseling, and patient-centered services, including psychosocial support, rehabilitation services and survivorship care.

For additional information for survivors from NAPBC, please check out the resources on their website here: Breast Cancer Surgery | ACS (facs.org)

What’s New at Southern Maine Health Care

On August 19, 2023, Southern Maine Health Care’s Peer to Peer Breast Cancer Support Group held a community event, “A Day of Expressive Arts” for breast cancer survivors and thrivers. The event was facilitated by Melissa Gerrish, LCSW, who works at SMHC as an in-patient social worker and is a member of the hospital’s Cancer Committee and Breast Program Leadership Committee. Eight survivors participated in a day of sharing, support and an expressive arts project. Examples of their beautiful string art creations are shown here. SMHC hopes to hold similar events on a quarterly basis in addition to the ongoing support group, which takes place on the 1st and 3rd Wednesdays of the month at 5:30pm at SMHC in Biddeford. For more information, contact Melissa at Melissa.Gerrish@mainehealth.org.

What’s New at Western MaineHealth

New Digital 3D Mammography System Installed

By Lissa Merrill, Director Outpatient Services

Stephens Memorial Hospital is proud to have installed the newest and most advanced mammography machine in the MaineHealth system in 2022. Called the Hologic 3Dimensions Mammography System, this system provides higher quality images and a more comfortable mammography experience.

Upgrading from 2D to 3D, the digital images use low dose x-rays to detect cancers. 3D technology is significantly more accurate, detecting 20%-65% more invasive breast cancers. The better images allow doctors to see beyond areas of density, further increasing early cancer detection and decreasing false-positive rates.

Please discuss the right imaging technique and schedule with your provider.

Resources & Quarterly Calendar

New Resources Guide Available

In collaboration with our navigation and social work teams, and our community partners, a new resources guide has been developed. Our goal is to provide helpful local, regional, and national sources of information and support. Click HERE to access the guide.

24/7 Cancer Helpline - Our trained Cancer Information

Specialists are available 24/7 to provide answers and support by phone at 1-800-227-2345, Live Chat or Video Chat.

Cancer Information and Resources

1 in 2 men and 1 in 3 women will be diagnosed with cancer in their lifetime. The American Cancer Society is available to offer guidance, support and answers to your questions.

Featured Cancer Sites:

Breast Cancer

Lung Cancer

Pancreatic Cancer

TIPS FOR HEALTHY EATING

A healthy eating pattern can reduce cancer risk and help control weight.

• A colorful variety of vegetables and fruits, and fiber-rich legumes (beans and peas).

• Foods that are high in nutrients in amounts that help achieve and maintain a healthy body weight. Whole grains (like 100% whole-wheat bread and brown rice).

• It is best not to drink alcohol.

• A healthy eating pattern limits or does not include:

- Red meat like burgers or steak

- Processed meats like bacon or hot dogs

- Sugary drinks, like soda or sports drinks

- Highly process foods and refined grains like chips and pastries.

Learn more helpful tips by clicking on these links:

• Eat Healthy

• Find Health Recipes

TEALTime

The NOCC is proud to present a morning of education and connection for the Maine ovarian cancer community. This program will bring specialists and area resources together to specifically address local needs and connect ovarian cancer survivors and their caregivers from Maine.

Date & Location

Thursday, October 26, 2023 11:00 am - 2:00 pm

Harraseeket Inn 162 Main St, Freeport, ME 04032

Ovarian cancer survivors and their caregivers are invited to enjoy a light lunch, meet local resource partners, and hear from specialists from Maine Medical Center and The Dempsey Center. Gynecologic Oncologist, Jason A. Lachance, MD will speak about connecting your care team and Oncology Social Worker, Michelle S. Hayes, LCSW, OSW - C will share ways to manage stress and strengthen your emotional wellbeing throughout your cancer journey.

For questions or to register for this complimentary event please contact Danielle Sullivan, New England Regional Manager at (e) dsullivan@ovarian.org (p) 339.368-6171

EXPAND SURVIVORSHIP SUPPORT

Survivorship care is the process of anticipating and addressing immediate, long term, and late stage effects from a cancer diagnosis and treatment over time. Because survivorship can have as many unique challenges as treatment, the MaineHealth Cancer Care Network (MHCCN) must expand our survivorship program.

You can give comfort to fellow cancer survivors by donating to a special fund dedicated to survivorship programming.

Receiving a cancer diagnosis and undergoing treatment are just the beginning. The MHCCN supports life beyond cancer — providing physical, emotional, and practical support for the unique needs of the growing number of survivors.

We hope you will consider joining others by donating to the survivorship fund and help more people live life to the fullest.

www.mmc.org/survivorship-fund

July-Sept, 2023

We would like to thank our donors and grant funders for their generous support of the MaineHealth Cancer Care Network and the patients and families we serve.