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Wearing Scars, Telling Stories: Upper Valley Breast Cancer Survivors Find Support in Recovery

  • Rebecca Gray at her home in Lyme, N.H., on Nov. 20, 2018. Gray was diagnosed with breast cancer 21 years ago. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com. Valley News photographs — Jennifer Hauck

  • Sharon Littlefield, of Thetford, Vt., fans herself because of a hotflash while giving her order at Molly's Restaurant in Hanover, N.H., on Nov. 2, 2018. Littlefield is part of a group for breast cancer survivors who meet at Molly's once a month. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com. Valley News photographs — Jennifer Hauck

  • Rebecca Gray's team for Race For The Cure was called Rebecca's Roadies, this glass piece hangs in her office window at her home in Lyme, N.H. Gray was diagnosed with breast cancer 21 years ago. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com. Jennifer Hauck

  • Rebecca Gray, of Lyme, N.H., runs along River Road in her hometown in July 2000. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com. Jennifer Hauck

  • Sybil Buell, center, of Wilder, Vt., listens during a monthly gathering of breast cancer survivors at Molly's Restaurant in Hanover, N.H., on Nov. 2, 2018. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Jill Wilcox, of Sharon, Vt., talks with Elaine Brousseau, of Hartland, Vt. during a gathering of breast cancer survivors at Molly's Restaurant in Hanover, N.H., on Nov. 2, 2018. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com. Jennifer Hauck

  • Assistant Attorney General Diana Fenton speaks with Gabriel Robarge during her father James Robarge's trial in Sullivan County Superior Court in Newport, N.H., on Jan. 15, 2015. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com. Jennifer Hauck

Valley News Staff Writer
Published: 11/24/2018 11:19:44 PM
Modified: 11/24/2018 11:19:46 PM

Hanover — Diagnosed with an aggressive form of breast cancer at the age of 38, in the middle of a job transition from the New Hampshire Attorney General’s Office to the Department of Education and with a young son to care for, Diana Fenton had plenty to get back to after she completed an arduous treatment regimen including chemotherapy, surgery and radiation.

So a year after Fenton’s initial diagnosis, when her son entered kindergarten at a new school in the fall of 2016, she didn’t tell his teacher that she recently had been treated for breast cancer. Though she still had a short haircut and a face puffy from steroids, she wanted a fresh start.

“I’m done,” she thought at the time, she recalled in a September phone interview. “I’m not going to be defined by this. And yet it is part of who I am.”

Fenton, a Mont Vernon resident who prosecuted several high-profile criminal cases in the Upper Valley before switching jobs, said she now realizes that other people could tell, just by looking at her, that she had a story to tell. But she wasn’t ready to talk about it.

Since then, her hair has grown back, and she now feels comfortable sharing her experience. She’s changed her approach and now tells her son’s teachers every year, so they’re aware of this history if, for example, he has anxiety when she has to have follow-up appointments.

“I have a scar I can talk about,” she said.

More than 12 percent of women will be diagnosed with breast cancer at some point in their lives, and about 90 percent of them survive at least five years after their initial diagnosis, according to statistics from the National Cancer Institute. While glad to be alive, many survivors in the Upper Valley and beyond still wear scars and manage symptoms related to their treatment for many years afterward. They also live with the knowledge that the disease could come back. To navigate treatment, as well as physical and emotional symptoms, survivors find support from peers, in exercise and in various alternative therapies.

“Everyone has a different way of managing this, not only physically, but mentally,” said Lyme resident Rebecca Gray, a 21-year breast cancer survivor.

Physically, since her initial treatment, Gray, now 69, has struggled with lymphedema, a common side effect of cancer treatment related to the removal of or damage to lymph nodes that causes fluid to build up in extremities. In Gray’s case, the fluid builds up in her arms and hands, and can be triggered by flying in an airplane or carrying things such as groceries.

While Gray said the pain is “unpleasant and unfortunate,” it’s “better than dying from breast cancer.”

She used to manage the condition with a compression sleeve, but now she does it with massage.

Gray also has faced side effects of her treatment, including hearing and bone loss, the latter of which required a bone implant in her jaw.

Becoming an Activist

To manage what she described as “survivor’s guilt,” Gray became an activist, and worked as an administrator and volunteer in the cancer field, including for Friends of the Norris Cotton Cancer Center and Susan G. Komen.

“That’s part of what drove me so much to help and to do stuff,” Gray said. “It did make me feel better when I would run the Race for the Cure (a Komen fundraiser). It did make me feel like I was doing something.”

Running the race with her daughter, friends and friends of friends helped her feel connected with a broader community focused on improving treatment and extending lives.

“One of the nicest parts of the whole journey is the number of people who just rally behind you, even if you don’t know them that well,” she said.

More recently, along with her husband, Ed, Gray has started a nonprofit organization, Journey Gives, which allows people to organize trips such as climbing Mount Kilimanjaro to raise money for causes such as cancer research and treatment.

“The fight goes on,” she said. “We need people to do the research (and) find better ways so we don’t have loss of hearing or bone loss or whatever.”

Recovering From Trauma

For Elaine Brousseau, a 74-year-old Hartland resident who was diagnosed with breast cancer in December 2012, the survivorship process also has included learning to manage post-traumatic stress disorder she said she developed as a result of her surgery. While the surgery was successful, she said the anesthesiologist “was not a gentleman” and berated her for smoking.

“I was humiliated and embarrassed in front of my family,” she said.

In addition, Brousseau, a retired critical care nurse, said her trauma was exacerbated by being placed on the same type of metal gurney that she had used to take deceased patients to the morgue. Lastly, Brousseau said anesthesia was not effective in shielding her from pain when radioactive dye was injected during a sentinel node biopsy, a surgical procedure to determine which lymph nodes to remove and to determine if the cancer has spread to the lymphatic system.

“Unfortunately, what I got from that was a type of PTSD,” she said.

She also developed physical symptoms. After Brousseau’s surgery, she experienced swelling throughout her chest wall. It took a massage therapist at least a year to break up all the scar tissue, she said.

Though she was already in menopause, Brousseau said her treatment also brought on hot flashes at a rate of 20 to 25 per day. To manage those, she turned to acupuncture, which she still undergoes as necessary.

During this time, she had very limited mobility in her arm, which caused a “huge interruption of my normal lifestyle,” she said. She had an “Olympic-sized” garden and a woodpile to maintain.

To get back to her previous physical abilities, Brousseau joined a fitness class, Physical Assessment of Lymphedema Studies, which involved lifting weights, doing leg presses and riding a stationary bike. She learned tai chi, which she found to be very helpful in managing both her physical and mental health. Meditation has also helped, she said.

“I don’t wake up with crying nightmares,” she said.

Due to side effects, Brousseau was unable to take the cancer-preventing drug Tamoxifen, which often is recommended to survivors. She undergoes an annual mammogram. The next one will be in January. Though so far she seems to be cancer-free, she said, “one never knows.”

Cancer Shapes Relationships

Brousseau was among the nine women gathered at Molly’s Restaurant in Hanover on the first Friday of this month for a meeting of the TGIF group. The group comes together monthly to talk about their cancer experiences, but also just gab about their families or whatever else is on their minds.

TGIF, short for “Thank God It’s Friday,” started in 2003 as a peer support group for women with breast cancer. In addition to the monthly gatherings, the women also communicate via email when members have questions about treatment options and experiences. They have a website at teamtgif.org and a team that participates in the annual Prouty fundraiser for the Norris Cotton Cancer Center.

“I was very happy to have this group to come to,” said 49-year-old Amy Dressler, of Sunapee.

When Dressler, now a 13-year survivor — who prefers the term “conqueror” — was undergoing treatment in 2006, three new acquaintances from the group came to visit her in the hospital, she said.

Group members offer support to one another throughout their treatment and beyond. Over a Switchback Ale or two, Patricia Barry, a Rindge, N.H., resident who is the principal at Stevens High School, said she felt good until about a year after treatment, when she felt tired and achy.

“I didn’t have the same stamina,” she said.

Barry’s other lingering symptoms include neuropathy, a numbness in her feet that makes it feel as though she is “walking on pads.”

Sitting next to her at Molly’s, Dressler said that her treatment caused her to lose the ability to use chopsticks with dexterity.

Both Barry and Dressler spoke of the great uncertainty that hangs over them: the possibility that the cancer will return.

But Dressler said she takes heart in knowing that “the longer we survive the better.”

Even so, she said, they’ll be breast cancer patients until they die of something else.

After her diagnosis, Barry said she found herself having panic attacks about her credit card bills and mortgage rates.

“What happens if I’m not around next year?” she said.

She finds her anxiety is still triggered by television ads for metastatic breast cancer drugs.

“I hate those,” she said.

Across the table, Sybil Buell, a 78-year-old Wilder resident who was diagnosed eight years ago, said the group does occasionally lose a member to the disease or other causes. Those losses can make her more anxious about her own future, she said.

Buell said the group had recently lost Lyme resident Elizabeth Kilmarx. Kilmarx, according to her obituary, died at age 54 in October of heart and lung damage from radiation treatment for childhood Hodgkin’s lymphoma.

“She was a ball of fire,” Gray said of Kilmarx.

The survivors said they enjoy spending time with each other. They can start conversations at a place of understanding that they don’t find with people who have not had cancer.

One of the challenges of navigating cancer and its aftermath is “having to manage everyone’s concerns about you,” Dressler said.

During the course of her treatment, Barry said, she lost her hair but kept working at Stevens.

“I hated the discomfort I saw in my kids’ faces,” Barry said.

But she got to the other side of her treatment and the students saw that she got through it.

“The alternative would have been to sit home and think about it,” she said.

In some cases, a cancer diagnosis can have the positive effect of bringing families closer, spurring some people to tell their loved ones how they feel.

“Since (my) diagnosis, my mother tells me all the time that she loves me,” said Sharon Littlefield, a 50-year-old Thetford resident.

Littlefield, who was diagnosed in May, was the most recently diagnosed of those gathered this month. She works at the Children’s Hospital at Dartmouth and had been hoping to donate a kidney to help a young CHaD patient come off of dialysis.

For Littlefield, one of the most difficult challenges has been that she cannot now help this young patient to get the kidney she needs.

“I was trying to help,” she said.

Expanded Support Services

To help heal this “grief in her heart,” as well as other symptoms such as headaches and knee pains, Littlefield has found comfort in Reiki, a form of Japanese energy therapy that is available at Norris Cotton.

Similarly, Barry said she found comfort in nonmedical aspects of her treatment, including music coming from a grand piano near the treatment rooms and art hanging on the walls.

“It’s more than just medicine,” she said.

The cancer center has worked to expand programs available to patients and caregivers in recent years, Andrea Buccellato, the head of Norris Cotton’s patient and family support services, said in a phone interview. Areas of expansion include massage, exercise programs such as yoga, and courses on topics such as chronic disease management.

In the 16 years the cancer center has had support programs, their number has nearly doubled, Buccellato said.

Elizabeth McGrath, a nurse practitioner in gastrointestinal oncology who leads Norris Cotton’s Survivorship Committee, said that while some treatment side effects are trending downward with increased precision in radiation and surgery, long-term side effects of other newer treatments, such as immunotherapy, are less well known, she said.

“Long-term side effects may not show at times of treatment,” McGrath said.

In general, the survivors at the greatest risk of both physical and psychological side effects are childhood cancer survivors, she said.

To help patients after their treatment is over, McGrath said, patients go home with a survivor care plan; a schedule for follow-up testing; and referrals to specialties such as occupational or physical therapy as necessary.

Because patients are managing “a lot of uncertainty,” clinicians also screen patients for their degree of psychological distress, she said. However, as one Norris Cotton patient told the Valley News this summer, cancer patients would benefit from more support for their mental health.

Planning for the Future

For Fenton, the psychological recovery is ongoing. Soon after she completed her treatment, her boss asked her a typical work-related question: “Where do you envision yourself in five years?”

Fenton had to say: “I have no idea. I can’t think that far out again, yet.”

But as time has passed, she has begun to look further into the future. At the time of the interview in September, she was planning to apply for a training program next summer.

“I can think that far out again,” she said. “For the longest time I couldn’t.”

Nora Doyle-Burr can be reached at ndoyleburr@vnews.com or 603-727-3213.




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