For cervical cancer survivor Kelly, cancer’s loss was especially painful. Diagnosed soon after her wedding, Kelly’s then-husband “freaked, but not to me.” A month later, he admitted to her what he’d told his friends. “I can’t handle this.” Six months into their marriage, he wanted a divorce.

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“The divorce rather than the cancer became my ‘OMG’ thing. I was forced to rely on my friends and family,” she recalled recently. “My focus became the divorce rather than the cancer. My mom and dad chauffeured me around for treatments and appointments. My ex took everything when he left – he left me with $100. So friends stepped in, even helping with money.”

As painful as the experience was, she looks back today with a mixture of gratitude and thoughtfulness.

“You have to find something or somebody that can be your ‘one good thing,” she instructs. “For me, it was finding out who was there for me, how my friends and family cared and were there. Back then, I was freaking out. Now, I think of it as getting one cancer to get rid of the other cancer in my life.”

Kelly was given a clean bill of health post-treatment and focused on the friends and family who’d been by her side. She focused on discovering who she was and who she wanted to be.

In 2007, her father, who’d been such a rock for her during treatment, was diagnosed with acute myeloid leukemia. “They told him he had three weeks to live,” she recalls. “He survived three and a half years. Hospice came to him four times. I didn’t feel like I ‘had cancer’ compared to him, but my experience made me more empathetic and understanding.”

Today, she channels that empathy into conversations with her matches, helping them to navigate the confusion, pain and even loneliness of treatment. “Even in the deepest, darkest times, there’s something you can focus on to get through it.”

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Life as an early-stage survivor

For those lucky enough to be diagnosed early or who compare themselves to patients who “really” have cancer, her guidance is profoundly simple and full of reassuring compassion. “Your cancer, your story is still yours to own. No matter what level, it’s still you. You still have cancer. Yes, you may be fortunate or feel fortunate, but you have to go through the uncertainty of treatment, the fear of recurrence.”

She’s found love with Drew. He’s a humorous, quirky bowler (like her father!) that she met nearly one year to the day after her father death. “The main way my family gets through tragedy and difficulty is finding laughter,” Kelly shared. “The doctor said that one of the reasons that my dad was with us so long was all the laughter. He’d see us cry, but also laugh. I lucked out to have a family that gets along. Drew is a perfect fit into that mix.”

Helping others – becoming an advocate

Kelly has become a champion of her own health and encourages others to follow her lead. “If someone tells you something you don’t know, ask them what it means. (DON’T GOOGLE!) If you still don’t understand, ask a nurse or someone you can rely on for trusted information.”

“When my dad was sick, they were throwing terms out left and right. I was writing things down and taking the notes to my aunt, who is a nurse. If you don’t know what something means, someone needs to be the advocate. Someone needs to be brave enough to say ‘dumb it down for me’ until everyone understands.
To connect with Kelly, or another survivor volunteer who understands, call 877-HOPENET or visit cancerhopenetwork.org/support. 

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The day began as volunteers shared their stories, discussing challenges like recurring or metastasizing cancers, working and caring for children through treatment or facing life with lymphedema. They talked about treatments – including acupuncture, immunotherapy, bone marrow transplants, robotic surgeries and participating in clinical trials.

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Then, came the pet discussions – including tales of foster cats, a giant German shepherd and a grumpy cat named George.

“Each Support Volunteer we train is unique – some are funny or quirky or have wildly interesting hobbies. Nearly all have faced a wide range of challenges in life – some cancer related, some not,” said Cynthia Gutierrez-Bernstein, CHN’s Director of Programs. “While many matches begin with a shared diagnosis or similar treatments, we also help cancer patients and caregivers connect based on personality or lifestyle circumstances.”

The survivor volunteers share practical advice and lessons they’ve learned since their own diagnoses. “My surgeon didn’t have time to answer all of my questions, so I asked if there was a resident or medical student I could talk to,” recalled Mary Ellen.

Linda, a breast cancer survivor who has been a Member Connections volunteer since 2015, encourages patients to visit hospitals and treatment centers they’re considering. “See how you feel when you walk in,” she advises. “You have to be comfortable where you are. You wouldn’t buy a house or an apartment without a visit.”

“Cancer Support Community is pleased to partner with CHN,” said Jen Sinclair Program Director for CSCGLV.  “Our collaboration helps people move through their cancer experience with information, encouragement and confidence.”

“CSC is doing amazing work to help patients, survivors and caregivers in the Greater Lehigh Valley,” Gutierrez-Bernstein continued. “Together, we will ensure that no one faces cancer alone.”
We are pleased to welcome the following volunteers to the CHN/CSC-GLV family:

• Amanda – Breast (with recurrence to bone and organs), stage 4
• Barbara – Uterine/Bladder
• Cecelia – Uterine, stage 1B
• Dianne – Melanoma, stage 3C
• Hally – Breast, stage 2
• Katy – Acute Myeloid Leukemia (recur, FLT3+, t(6:9) mutations)
• Mary Ellen – Multiple cancers (basal, melanoma, breast cancer recurrence, thyroid), all stage 1
• Rebecca – Breast, stage 0/1
• Susanne – Breast, stage 4, Chloroma (leukemia)

ABOUT Cancer Support Community -Greater Lehigh Valley
The Cancer Support Community’s programs help people affected by cancer – survivors, caregivers, friends and family – regain control of their lives, reduce stress and isolation, and restore a sense of hope for a better quality of life regardless of the stage of the disease or the type of cancer.

About Cancer Hope Network
Cancer Hope Network provides free one-on-one emotional support to adult cancer patients and their caregivers. Each of our 400+ volunteers is at least one year post-treatment or successfully undergoing maintenance therapies. CHN Support Volunteers have faced more than 80 cancer types and speak 15 languages. They offer encouragement from diagnosis, through treatment and into survivorship.

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Whitey was diagnosed with Acute Myeloid Leukemia (AML) in 2012. Like many, his diagnosis was a whirlwind of tests and doctors’ appointments. At the time, standard of care was to treat AML with an especially powerful form of chemotherapy that often resulted in hospitalization or worse. “My doctor was telling me ‘Some of the older guys die from this chemo’” Whitey recalls. “And I was one of the older guys.”

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He began a clinical trial with a milder form of chemo. As that progressed, he received periodic bone marrow biopsies so his medical team could check his blast count (a shortened version of myeloblasts: abnormal immature white blood cells that overproduce in patients with AML). Once his blast count was down, he transferred to the care of a transplant specialist.

Above and beyond: A wife’s support after transplant

Whitey is deeply grateful for the support of Vance, his wife of more than five decades. “I was getting outpatient chemo at the time,” he recalls fondly. “The Northeast was getting a huge snowstorm and the mayor of Boston had banned all automobile travel. We knew the snow was coming on Friday and my chemo was scheduled for Saturday.

Rather than miss a treatment, I had checked into the hospital. Vance was at the Hope Lodge (a “home away from home” for patients and caregivers who have to travel a great distance for treatment). I’m sitting in my hospital bed, watching snow removal out the window and she shows up. She walked a mile and a half to see me and a mile and a half to get back.”

Finding a way to help others in the Princeton community and beyond

Shortly thereafter, Whitey saw a notice from Bob Pickens about the Princeton Class of 1961 Caring Network. The program is a joint effort between the Class of ’61 and Cancer Hope Network. Whitey was soon connected with a CHN Support Volunteer. “He was a nice guy. Very pleasant,” Whitey remembers.

“I’d done so much research that at the end of the call he told me, ‘I think you know more about this than I do.’ But it was meaningful to speak to someone who had actually gone through the process. It’s good to talk to someone who has been through the process and survived.”

It’s been four and a half years since his successful bone marrow stem cell transplant at Dana-Farber. Today, Whitey pays forward the encouragement of that conversation as a trained member of the Class of 61’s Caring Network and as a national CHN Support Volunteer. “Most of the patients I speak with have not had a stem cell transplant. They are waiting for one, thinking about it, hoping to get one,” he says. “I describe what it was like to get the transplant – in detail. I tell them everything I can think of that led up to my transplant – and tell them about my life post-transplant.”

GVHD and providing peer support to fellow patients

“I don’t give them medical advice,” he continues. “I’ll tell them what my doctors tell me and try to follow up with them as they progress through their cancer journey. I just want to answer their questions, to tell them about the experience. They need to know the answers. I tell them about my experience and encourage them that it’s possible to live after being diagnosed.”

“Graft vs Host Disease (GVHD) is very common for people who get stem cell transplants. Right now, I have dry eyes, dry mouth and swelling in my hands, but I’m still able to grab a tennis racket. I grow vegetables, everything. I rake leaves in the fall and shovel the driveway in the winter. I try to walk a couple miles every day. Exercise has helped in my recovery. I was pretty weak when I got the transplant, but gradually, my strength is coming back.”

About Cancer Hope Network and The Caring Network

The class of 1961 Caring Network aims to assist classmates and their families who are dealing with medical problems as well as financial or legal issues. It was established in 2013 by the Princeton Class of 1961 Caring Committee which the class foundation started in 2012. Shortly after formation, the Caring Network partnered with Cancer Hope Network (CHN), a New Jersey-based non-profit organization. The year before, two of the committee’s members, Joe and Ev Prather, attended CHN’s annual Chrysalis Gala and learned about the organization.

Thinking back at the number of fellow alumni they knew who were dealing with various health issues, including cancer, Joe and Ev were inspired. What if their friends and classmates could speak with one another, offering experiential knowledge and support? The thought of building such a program from the ground up was daunting.

They brought the idea back to the Caring Committee and members Dr. Bob Pickens and Joe Prather, subsequently reached out to Wanda Diak, Executive Director for Cancer Hope Network. The Caring Committee and Cancer Hope Network worked to design and implement a custom program for the Class of ’61 Alumni, calling it “The Caring Network.” The collaboration leverages the volunteer support resources and management expertise of CHN’s long history in a way that’s specifically designed to meet the needs of ’61 alums.

For more than 40years, CHN has provided confidential, free, one-on-one support for cancer patients and their loved ones. CHN matches patients with a trained volunteer who has had a similar cancer experience – often connecting based on the type of cancer, treatment protocol or important psychosocial factors.
In the fall of 2014, 12 Class of ’61 alumni participated in training sessions to become Support Volunteers.

Their experiences both as patients and caregivers cover an array of illnesses including cancer, diabetes, heart disease, orthopedic procedures, neurological disease, sleep apnea, and more. They are able to support fellow alumni who are struggling with illness and the many challenges it brings. A few who are cancer survivors (like Paul) have even gone on to become volunteers for Cancer Hope Network’s national program.

To connect with Whitey, Bob or another survivor, please contact Cancer Hope Network at 877-467-3638 (877-HOPENET) or request a match at cancerhopenetwork.org/getmatched.

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