Breast cancer patient speaks out about battling lymphedema

Breast cancer patient speaks out about battling lymphedema

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Breast cancer patient speaks out about battling lymphedema

Saturday, 23 October 2010

After feeling a mass deep inside the tissue of her left breast, Sandra Gray faced a series of uphill battles that seemed unusually daunting.

First, the longtime Columbia activist and wife of former County Councilman Vernon Gray had to convince doctors last August that the breast cancer was actually there because they couldn't detect it, she said.

Then, she had to drum up physicians' support for a modified radical mastectomy, because surgeons balked at removing the breast when cancer still hadn't been found on a mammogram.

And lastly, she had to return to her physician for a special postoperative visit weeks after surgery because her left arm kept swelling up.

Gray, 68, was given a second diagnosis in late spring of lymphedema, which is caused by obstruction of the lymph glands and results in a build-up of lymphatic fluids. It can occur in various areas of the body, but affects the arm in breast cancer patients, she said.

And worst of all, it's a permanent condition in nearly all cases.

But true to form, say those who've worked with her, the self-employed spiritual director has been confronting her rehabilitation therapy with aplomb, and is sharing her personal story as part of Breast Cancer Awareness Month.

"My philosophy is, 'I'm responsible for you and you're responsible for me,'" Gray said of her decision to discuss her diagnosis and treatment publicly for the first time.

Gray's cancer — a metastatic lobular carcinoma deep within the dermis of the biopsy site — was confirmed after the mastectomy and involved four of the eight lymph nodes there, she said.

Chemotherapy, during which she lost her hair and some of her nails, was followed a month later by radiation treatments and that's when the lymphedema began, she said.

Because the condition is incurable, it feels like a lifelong sentence meted out on top of the original life-altering diagnosis of breast cancer, Gray said.

Even her physical therapist, Kelly Marasco, said she was unsure before she received the specialized training for lymphedema if she wanted to work with female patients who surely would be depressed to learn that successfully fighting cancer wasn't the end of the road for them.

But just the opposite happened.

"These women are wonderfully optimistic and look at their diagnosis as 'just another challenge that lies in front of me,'" said Marasco, who works at the year-old Bolduc Family Outpatient Rehabilitation Center on the campus of Howard County General Hospital in Columbia.

"They are incredibly positive, motivated and upbeat" during the hour-long treatments, which involve special exercises and manual massage to reroute the flow of lymphatic fluids out of the arm and back through the kidneys, she said.

Range of motion, which can be hampered by scarring, is also regained through exercise, she noted.

Gray laughs heartily and frequently, and has been so optimistic throughout her five months of lymphedema treatment that people have told Marasco that the pair have been having "way too much fun" during rehabilitation, Marasco said.

She said observers have compared Gray's personality to that of Wanda Sykes, a popular African-American comedian and actress.

Gray said humor was certainly a key to her treatment approach, and that she spent her months in rehabilitation watching such TV comedies as " Everybody Loves Raymond," "The Golden Girls" and "Two and a Half Men."

With an emphasis on bringing as much joy into her life as possible, she also continues to sing with three choirs at Columbia Baptist Fellowship, where she is a member.

But most importantly, she is a taking a conscientious, holistic approach to recovery with a concentration on spiritual rituals, she said.

"There is more to who we are in this life than can be seen," she said of her spiritual focus.

Gray has followed a wellness plan with a goal to "restore and maintain optimum health and harmony of body, mind and spirit."

To accomplish this, she also focuses on nutrition and vitamin supplements, alternative treatments such as acupuncture and reflexology, and what she calls "mind-body" medicine, such as self-hypnosis and harmonic healing, which are sounds accompanied by tonal vibrations.

Her medical treatment, aside from the rehabilitation sessions, involves wearing a sleeve and compression glove every night while she sleeps to prevent her arm from ballooning back up, though sometimes patients' limbs are wrapped with special bandages, said Diane Braun, director of the hospital's outpatient rehabilitation services.

"Lymphedema is a lifetime issue," Braun said. "We not only treat patients, we teach them what symptoms to be on the lookout for."

Treatment of lymphedema affects between 10 percent and 15 percent of cancer patients, according to Dr. Nick Koutrelakos, a medical oncologist at Maryland Oncology and Hematology.

"Lymphedema was more of an issue 20 years ago than it is now," he said, as doctors used to dissect higher into the armpit, involving more lymph nodes and raising the chances of blockage.

But within the last five to seven years, surgeons have focused on evaluating the sentinel lymph node, which is the "watchdog node" that controls the specific area of the body under siege by cancer, he said.

"If you remove the sentinel node and the biopsy is negative, then no further nodes need to be removed," he said, making it easier for the patient to recover and greatly reducing the chance of lymphedema.

"The key is to just not let it happen," he said.

The Bolduc Center, which employs seven therapists, handles eight to 10 patients a month, estimated Braun.

"One of our aims is to empower patients to continue their treatment at home," Braun said, since health insurance will only cover a set number of appointments.

For Gray, that translates into continuing to do what she has been doing and focusing on the power of positive thinking.

"I have never asked, 'Why me?'" she said. "The important thing is to control your mind and not to worry. You cannot heal what you do not acknowledge."

Source: By Janene Holzberg, Special to The Baltimore Sun

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