Sarah Miretti Cassidy

According to the American Cancer Society, “African Americans are about 20% more likely to get colorectal cancer and about 40% more likely to die from it than most other groups.” This Colon Cancer Awareness Month, our Hopelight Spotlight features Support Volunteer Teres who has beaten those odds.

Teres’ journey from a healthy young woman who’d never even spent a night in the hospital to a colorectal cancer survivor who lives with an ostomy was unexpected and terrifyingly quick.

“All I would do was cry. I got really depressed and I remember saying to my husband and my kids, ‘I’m not going to get through this, you’re going to have to put me away somewhere.” It was at that point Teres called Cancer Hope Network.

Today, she’s a longterm survivor and is channeling her lifelong passion for helping into raising awareness. She’s providing guidance and support as a peer mentor for Cancer Hope Network.

“You will be ok. It’s something people say to other people all the time. But I have to say that it’s true. Have hope. Have faith. Fight and know that you will be ok. My treatment was tough, it was so very difficult, but it saved my life. I’m still able to function, to have a quality of life as good as or better than before my Colorectal Cancer diagnosis.”

https://cancerhopenetwork.org/blog/ostomate-power-living-well-after-colorectal-cancer/

https://www.cancer.org/latest-news/colorectal-cancer-rates-higher-in-african-americans-rising-in-younger-people.html#:~:text=African%20Americans%20are%20about%2020,are%20related%20to%20socioeconomic%20status.

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Ostomate Power: Living Well After Colorectal Cancer

“I was 35 with two little kids, and I didn’t know what I was doing,” recalls Support Volunteer Kristin of her initial diagnosis more than 24 years ago. “I didn’t know the number of appointments I’d need to navigate or the amount of side effects I’d face. If I can just give my matches even one nugget of information, that would be great.”

The nuggets of wisdom she shares are hard won. Kristin’s cancer was discovered when she felt like she was having contractions — but wasn’t pregnant. She also had a history of endometriosis and adenomyosis prior to her cancer diagnosis, so Kristin’s care team recommended a hysterectomy.

Kristin was trained as a Support Volunteer earlier this year. She is part of a pilot program between Stanford Health Care and Cancer Hope Network. The pilot’s goal is to help mitigate patients’ and caregivers’ fear and ambiguity around cancer diagnosis, treatment, and clinical trials. It’s an opportunity for patients and caregivers in the East Bay area to receive free and confidential support — and for survivors and caregivers like Kristin to share their hard-won wisdom.

Initially diagnosed with a slow-growing endometrioid tumor, Kristin was closely monitored by her health care team. In addition to the full hysterectomy, Kristin also underwent a lymph node dissection. A year later, she returned from a family vacation and landed in the emergency room. She needed major surgery for a tumor that caused a “humongous” blood clot pressing on her femoral artery.

Shortly thereafter, she was diagnosed with adenosarcoma, which had spread, with lesions on her liver, requiring removal of eight inches of her colon and a re-built bladder. She spent more than 16 days in the ICU and hospital, and when she recovered, started 10 months of grueling chemotherapy that caused hair loss and neuropathy, which she still has today. She was prescribed Megace and quickly gained 40 pounds, which was extremely difficult.

After 15 years, she had a recurrence of her cancer with more surgery, chemotherapy and radiation. With the removal of part of her small bowel and the inability to properly digest foods, the treatments that saved her life have often been followed by unexpectedly challenging side effects.

She is thankful to the family and friends who rallied around her during each of her bouts.

Today, she’s found perspective. “While I have all these things to deal with, the alternative is that a lot of people die from ovarian cancer. I’m still here and that’s something I remind myself of all the time.”

She’s used her own struggle to empower others, helping normalize discussions of “embarrassing” health issues. “If I have a large cut on my arm and ask everyone to look at it, it’s acceptable. But if you’re starting to talk about your body parts and bodily fluids — and there’s a lot of 

 with ovarian cancer — it’s really hard.

The self-proclaimed worrywart has introduced meditation into her daily routine, and it is helping. “Meditation didn’t change me….but it helped calm me down. It helps me save my worry for when it’s necessary.”

She’s also seeing benefits from her lifelong passion for exercise. “I enjoy it. I feel really good when I exercise, and that has helped me feel better.” Faced with long-term neuropathy (you can find her tripping her way through life)she’s learned to give herself grace when bumping up against new physical limitations. “Sometimes, you want everything to be better. But it’s helpful to remember that “even if I feel 10% better, it’s progress,” she encourages.

Kristin is an active member of Stanford Medicine’s Cancer Patient Family Action Committee (PFAC), a group of volunteers committed to the patient experience at Stanford. It’s been a fulfilling experience — “we provide specific feedback and insights to the coordinators, and they make real changes, which is phenomenal.” When she learned of an opportunity to serve in new ways through the pilot program between Stanford Health and Cancer Hope Network , she leapt at the chance to put her longtime passion for providing peer support into action.

Kristin has always been a helper — providing guidance and answering questions for other patients she met — but she found the training offered by Cancer Hope Network especially useful. “Training is very concise. The commitment to complete the coursework is fairly minimal, but you get so much out of it, learning what to do and what not to do when talking to a patient. It gave me confidence and guidance.”

She is passionate about her work as a volunteer – and thankful for the wide range of support offered through this pilot program. She joins Cancer Hope Network’s national bench of volunteers who’ve faced more than 80 types and sub-types of cancer, speak 15 languages and range in age from 19-94.) “Cancer Hope Network is like one stop shopping. It provides support for people wherever they are in life,” she said. “They’re like command central for matching people looking for a mentor with a volunteer who is a good fit.”

From our earliest conversations one thing has become clear. Stanford PFACs are made up of extraordinary people who are committed to improving the healthcare experience of others,” said CHN Programs Director Samantha Schrager. “That focus on helping others is shared by the broader community of Cancer Hope Network volunteers and another reason we are so pleased to combine resources and efforts with our friends at Stanford.”

To learn more about becoming a volunteer or to request a free and confidential match with a trained Support Volunteer through the Stanford pilot program, visit cancerhopenetwork.org/Stanford.

For health care and nonprofit professionals interested in teaming up with Cancer Hope Network to provide support for their patients, please contact Sarah Miretti Cassidy, Director of External Affairs, 908.879.4039 or 

Ovarian cancer survivor trained as peer mentor volunteer as part of CHN’s pilot program with Stanford Health Care.

Meet Kristin: Cancer Survivor Finds Meaning and Purpose Helping Others

Unlike professional members of the caring community, a Mental Health First Aider can be anyone committed to making life a little easier and a little more accepting for people going through dark days.

“Mental Health First Aid was created in 2001 by Betty Kitchener, a nurse specializing in health education, and Anthony Jorm, a mental health literacy professor. Kitchener and Jorm run Mental Health First Aid Australia, a national non-profit health promotion charity focused on training and research.” Today, serving across the globe, MHFA’s goal is simple — it “takes the fear and hesitation out of starting conversations about mental health and substance use problem.”

Trainees include teachers and first responders, advocates community members — even Former First Lady Michell Obama. It’s a 2.5 million strong group that now includes the Cancer Hope Network Staff.

The CHN staff, along with professionals from several other cancer support organizations across the nation did lots of homework and pre-tests, then gathered virtually for an instructor-led training one sunny Saturday.

We learned about ALGEE, a step by step action plan for folks in distressing situations, much like first aid’s ABC action plan for people needing CPR. We discussed patient-first language (“my patient is bipolar,” not “my bipolar patient.”) as part of maintaining an atmosphere of dignity and respect. We also heard great insights from participants (first names used for privacy).

“When it’s happening to you, it often feels like it’s happening ONLY to you,” -Gail

“Sometimes, that best voice to give is the voice of silence.” -Anthony

We were encouraged to listen with a blank canvas – letting the speaker part with their words, listening non-judgmentally.

The day touched difficult topics – suicidal ideation (Sometimes, people downplay what they’re going through – and sometimes we downplay what we’re seeing.), traumatic events (Don’t make promises you can’t keep. Unless you’re in construction, can’t promise someone a new home.), along with the importance of self-care for MHFA’ers being trained.

It was a challenging, thought-provoking day of learning and empowerment. “We were thrilled to bring this critical knowledge to caring professionals,” said Samantha Schrager, CHN’s Director of Programs, who organized the session. “A cancer diagnosis or treatment can be traumatic for the patients and caregivers we serve. Being trained as MHFA professionals will help each of us better assist our clients.”

Interested in receiving MHFA training? Visit 

 or contact CHN’s Director of Programs about upcoming CHN-hosted training. (sschrager (at) cancerhopenetwork.org)

Mental Health First Aiders are anyone who wants to make their community healthier, happier and safer for all.

CHN Staff, Other Caring Professionals, Certified as Mental Health First Aiders

“Where do you sit on the worry scale? How much added stress can you handle? On a scale of 1-100, many of us fall in the 50-60 range every day. Now add cancer.”

With that, Greg Blake, who has spent the past semester interning with Cancer Hope Network as part of his masters’ coursework, kicked off the discussion for the latest Volunteer Roundtable.

Greg spent his first career as an institutional bond salesman for one of the largest capital bank market groups in the nation. After losing his wife to pancreatic cancer, the Wharton grad returned to his beloved alma mater to obtain his graduate degree in Mental Health Counseling, hoping to help others navigate the challenges of cancer. Using the tenets of Dale Carnegie’s “How to Stop Worrying and Start Living,” Greg led a robust discussion focused on three worry remedies. Survivor and caregiver participants shared their thoughts and opinions on the application of these tenets through the lens of their personal experiences managing worry and stress while facing the unique complications of cancer. The conversation focused on the following:

Analyze your worry. Take action. Repeat as necessary.

Clear, definite decisions can reduce worry and mitigate distress. Following the guidelines set out by Mr. Carnegie so many years ago, the group walked through the analytic phase of worry minimization with two questions: “What am I worried about? What can I do about it?”

For a client facing cancer, finding questions is often the easy part. The moments after a diagnosis are a whirlwind – with each question bringing new ones to the surface: Am I going to live? What if the next appointment includes worse news? What if treatment fails? Who will take care of my family while I’m sick?

These questions can feel isolating and scary. But, it is important to know that you are not alone. CHN Support Volunteers have been through the whirlwind and can help with the second, critical portion of the remedy: planning practical action - how to go about getting a second opinion, creating a list of questions to ask at appointments, how to cope with information overload, navigating seemingly endless appointments. We’re here with resources with practical help about working through treatment from our friends at Cancer + Careers and information about insurance and organizing and updating important medical or legal paperwork from our colleagues at Triage Cancer. “The more specific the possible solution, the less your brain is panicking and is able to focus on solutions.” Picking a path – even if it’s wrong! – helps stop the “particle accelerator” of worry. 

Accept the worst and then work to improve it.

This strategy kicked off heartfelt discussion amongst the survivors and caregivers who joined the call. The group acknowledged the significant challenges of applying this step to cancer. Sometimes our worries are a bit more pedestrian like having to figure out the kids’ carpool, how to complete a project at the office on time, or how information you shared at a recent meeting was received by the audience. Other times, our worries are more serious and include concerns about money, relationships, or long-term security. In these cases, this step may seem challenging, but also practical. These situations are worrisome—scary even—but, for the most part, they are not a matter of life or death. 

But a cancer diagnosis – possibly a terminal one makes accepting the worst much more daunting, even temporarily debilitating. But, while cancer changes the equation, it does not change the underlying validity of this strategy.

The approaches were as varied as the personal experiences represented, but one thing was clear. As in so many situations, honesty with self and those around us, is crucial. In this case, that can mean recognizing the painful reality of coming loss and having difficult conversations with those we love.

“Don’t hide from your diagnosis,” suggests 22-year brain cancer survivor Tom. “Talk about it and let people know what you think and feel and what YOU need. If you put words to it, it’s no bigger than that.”

For some patients and loved ones, “working to improve the situation” means searching for clinical trials and new treatments. For others who are facing a reality where treatment won’t make a difference, it means finding the best ways to maximize their quality of life – from fulfilling bucket list wishes to having important conversations about advanced directives and estate planning. But for all, honest, open conversations have been helpful.

“As volunteers, we are teaching clients that they’re in charge,” said ovarian cancer survivor Laura. “We’re helping them advocate for what’s important to them.”

For others, this strategy may be most useful. With “day tight” compartments, each day begins anew – with an absolute focus on the present. 

, this strategy is built on a quote from Thomas Carlisle, “It is not our goal to see what lies dimly in the distance but to do what clearly lies at hand.”

For many years bulkheads, a dividing wall or barrier, kept ships afloat, blocking floods from overwhelming all areas of a ship. When worry begins to overwhelm, closing the “mental bulkhead” against guilt over past decisions and worry about future complications can create “a dry place” to focus and process.

For cancer patients, that may mean focusing on a single chemo appointment, as 

 did. (“Don’t view it as 12 chemos. View it as one chemo at a time. Break it up into little tasks. If you look at 12, it’s too much”) For caregivers like 

, it meant choosing happiness as she and her husband wrung everything out of their final decade together. (“You might be surprised at how counting what remains—instead of counting what was lost—made a huge difference on the happiness meter.”)

Don’t lose your todays worrying about tomorrow

We hope these tips are helpful to you as you work through the worry cancer inevitably brings. Our trained survivor and caregiver volunteers are here to help. Request a free and confidential match conversation today – visit cancerhopenetwork.org or call 877.467.3638 (877-HOPENET)

Author’s note: At Cancer Hope Network, we’re committed to helping people navigate difficult conversations. This session of Volunteer Rounds was challenging for me personally. The presentation and discussion addressed important, difficult topics. Intellectually, I know it’s vital to have conversations with loved ones who are nearing the end of their life. Professionally, I’ve done a lot of research and have talked to/helped others prepare for and navigate those talks. I’m a champion of honesty and directness. But no knowledge, no research made it easier when it was *my* loved one facing hospice or when the talk about time versus quality of life was happening at a kitchen table where I’ve spent hours laughing and talking.

We each approach worry and illness in different ways. I hope that the conversation reflected below is helpful to you as you find the structure that works best for you. No matter how you choose to address worry, please know that our Programs Team and Support Volunteers are here to help.

Lessons from Dale Carnegie, applied to 2021 cancer fights.

Sarah Miretti Cassidy

Ostomate Power: Living Well After Colorectal Cancer

Meet Kristin: Cancer Survivor Finds Meaning and Purpose Helping Others

CHN Staff, Other Caring Professionals, Certified as Mental Health First Aiders

Volunteer Rounds: Managing Worry During A Cancer Journey

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