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Margaret Barney tells her story of MS and cancer

   
 
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Margaret Barney, Executive Director of the MSplus Foundation, told her story about being dually diagnosed with MS and then cancer.

Barney said, “I was diagnosed with Multiple Sclerosis (MS) in 1979 but my symptoms first appeared in 1977 when I was 29, just a few weeks after my only child was born.”

Barney said, “After my baby was born, I got home from the hospital with blurred vision. This tipped me off that something was a little bit wrong. However, I went back to work four months after delivery. When I went to my ophthalmologist to get new glasses, I described the blurriness. I thought I needed a new eyeglasses prescription. However, new glasses didn’t help. I returned to the doctor for a different prescription. He asked if I had any numbness or tingling in my fingers or trouble walking. I told him I had some numbness in my fingertips. I also was experiencing some problems with my bladder. However, I didn't think anything of that because I had just delivered a baby and thought it was related to her birth.”

“My ophthalmologist conducted a simple test in his office. He used a wooden pointer to delineate different colors on a wide expanse of the poster and asked if I could see the tip of the pointer or not.” Barney said that is what tipped him off because she could see some areas where the pointer was but not all.                                                               

 “After the testing, he referred me to a neuro-ophthalmologist who conducted more sophisticated tests. During a visual field test, I looked into a machine and she asked what I could see and what I couldn’t. It wasn’t an eye chart. A little arrow went around in the field and you clicked if you could see it. After the test, a print out showed what part of your vision is missing.”

Barney said the neuro-ophthalmologist didn’t say much about the test results. She sent her to a neurologist. There she underwent physical neurology tests where she had to perform various physical motions such as raising her hands.

“This doctor told me that he thought I had one of three conditions. One condition was a disease called optic neuritis; the second was Multiple Sclerosis; and the third was brain tumor. I was pretty freaked out. I then had a brain scan that ruled out cancer, and it became obvious that I did have optic neuritis.  Optic neuritis can be a disease by itself but it often is an early symptom of MS.”

Because the study of MS was not advanced and there weren’t diagnostic tools, obtaining a confirmed diagnosis was difficult. The MRI, which is the tool most used now to diagnosis MS, was not invented. In the 1970s, the only diagnostic tools were observation over several years or a lumbar puncture, which is also known as a spinal tap. In a spinal tap, fluid is taken out of a person’s spine and tests are performed to look for a certain protein.

To check for the MS diagnosis, Barney would have to have a lumbar puncture. However, her physician thought that with Barney working full time and with an infant, they would instead watch her symptoms. Her doctor thought the lumbar puncture procedure might make her worse. At the time the only medicine prescribed for MS was prednisone by mouth. Medications could be prescribed for managing symptoms such as spasticity, depression and lack of energy.

“I was then a single mother, because my marriage didn’t work out. My only symptom was my low vision. Then I started getting a little more compromised. Even with my health issues, I experienced real joy in having a baby. She was my inspiration to keep going on.

 “My vision problems affected my work because I was a writer and editor. It was difficult as printed or typed pages would sort of drop out, and I made a lot of mistakes with editing, which is not good when you distribute documents and press releases to the public. Also, I had problems driving, and I had to commute 18 miles each way from my home to the Texas Medical Center, which was particularly difficult and draining.”

Barney was able to get some help with visual aids. She was prescribed a strong microscopic type of glasses to use to read.  To watch movies and TV, Barney wore glasses similar to sports binoculars.

Even with the special glasses, Barney continued to have difficulty at work. She had to print out documents in large type and have people write large so she could see the copy.

Barney said, “I was very much in denial; I didn’t want my colleagues at work to know because I thought my job might be in jeopardy. I worried that my condition might be reported to the insurance company and I would lose my insurance. I was fearful all the way around. I had a baby to take care of, and MS is so unpredictable.”

“After a while, the doctors decided I had chronic progressive MS, which these days is called secondary progressive.”

Unlike the more common relapsing-remitting variety of MS, in which patients experience periods of increased symptoms, often followed by periods of remission of symptoms, secondary progressive MS results in more rapid and permanent loss of function, and is less responsive to drugs and treatments that the relapsing-remitting form.

“When I had a new symptom, it did not heal and the vision loss did not improve. Whatever physical capability I lost was lost. With each new episode I would lose a little more. The losses were dramatic in the beginning and it wasn't easy to deal with that.”

Barney said she got used to that phase of loss of vision and learned how to get around. She met a very supportive man, Jerry Barney, whom she later married. He knew she had MS and was willing and able to help her through what she was experiencing then and whatever might come.

“I was diagnosed in 1979. In 1982 I got married for the second time. In early 1983 as my daughter was getting older, my husband asked me to quit my job in public relations so I would have more time to rest. Because of the nature of my work it was becoming more difficult to do the reading, writing and editing required.”

“After my marriage, my vision was relatively stable. I didn’t have much increased trouble with it, and I only experienced incremental losses in vision. I felt that I was coping with that pretty well.

“We moved to Washington state about three to four years after my original diagnosis. In 1986, my symptoms were pretty much the same. In 1988, I started having some problems with walking whenever I was fatigued. One leg or foot would drag. That started a whole new set of coping mechanisms and feelings of loss, because I needed to use a cane for my balance. In public, people would give me a wide birth. I was concerned about safety. I wanted to make sure not to fall or get in the way of others, especially children.”

Barney’s main problem was that her vision was getting incrementally worse. She was unable to drive at night, but was finding ways to cope. She hired a driver because her daughter was in middle school and needed to get to school, activities, and sports.

Later, when Barney’s daughter was in high school and could drive herself, Barney still used a driver to get around the community for her own activities, such as social engagements and volunteer work.

“In 1995 my husband went back to graduate school and had an opportunity to go to Australia through a student exchange program. While I was with him in Australia, my walking got a little worse that it had been. When we returned to the states in 1997, I needed to use a walker and a scooter. At first I was really down about this, because I thought it would make me look like more of an invalid and call attention to the fact that I had MS. However, both aids really helped and allowed me to do a lot more things. I could go out more than when I used a cane. The walker and the scooter gave me more freedom I wasn’t expecting.

“When my daughter married, I used a scooter to go down the aisle at the church. During that time, I was more accepting of my symptoms. The reality was I needed help. I was going along just fine with the scooter and walker and getting on with my life.

“Then, in 1999 at age 52, I went to my family doctor for a routine exam and he found a lump in my left breast. The lump was deep and close to the chest wall. I had a second mammogram and the radiologist asked me to wait. A sonogram showed a very large tumor in my left breast. The doctor told me right away it was cancer.

“I was shocked and disheartened. I was already facing one serious disease – MS – and the ongoing process of coping with those symptoms and losses of function. It never occurred to me that I would have to deal with yet another major disease in my life. Cancer was the last thing in the world I thought I might have to worry about.”

“When diagnosed with cancer, I was taking a wide variety of medicines for my MS. I was concerned about how the cancer drugs would interact with the MS medicines I was taking.  I called many people in the medical profession, but no one could give me answers. This seemed to be a new frontier. Physicians just didn’t have patients who were dually diagnosed with cancer and MS.

Barney then contacted the Cancer Information Service. They were extremely helpful with providing information about breast cancer. But they said her best bet was to contact the Multiple Sclerosis Society. Barney was very familiar with the local chapter and had gone to their meetings. When she contacted them, they referred her to the national society in New York.

At first, when she called the National MS Society, she was transferred around and had to talk with a lot of people. She told them she had MS and was diagnosed with cancer and asked them what she should do. They told her that the cancer treatment should take precedence, in the short-run, over MS meds. That was the first definitive advice that she received about her dual diagnosis.

Barney was referred to a surgeon who confirmed the cancer diagnosis and recommended a lumpectomy. A brain scan showed that the cancer had not metastasized there or anywhere else in her body. The cancer was contained in her left breast.

“Before the surgery, my neurologist prescribed an extra infusion of a corticosteroid I was taking for my MS, to help my strength and stamina level. I went in for the lumpectomy. The tumor was called ductal carcinoma in situ (DCIS) and is common and easy to treat, if found early. It looked like I had Stage 1 cancer, but after the surgeon removed the lump out it went to pathology. They were not able to get clear margin because the cancer was so close to the chest wall. There were two microscopic areas in a blood vessel just outside the tumor.

“The doctor found and removed two tumors during the surgery: a stage one tumor the size of a golf ball, which was encapsulated in its own membrane, and a stage two tumor the size of a dime, which was outside the membrane (perhaps even attached to the outside of the membrane. The second tumor was a surprise.

“I took another infusion of the corticosteroid before a second operation, a sentinel node biopsy, which dissected the two nodes closest to the tumor. There were no cancer cells there, which was great news. The other good news was the cancer was estrogen receptive, which meant the doctor could give me medicine to block the amount of estrogen in my body to prevent the hormone from feeding the tumor and making it worse.

“While healing from the surgeries, I had chemotherapy for about three months on an outpatient basis. The contents of my chemotherapy cocktail eliminated the need for one of the drugs I had been taking for MS – the two drugs would have been redundant. After an additional nine weeks of radiation, I started taking a hormone blocker. This regime put me in very good shape.

“At that time, my husband and I starting thinking about what we could do to help other people with MS who received a second diagnosis of cancer. After my treatment was finished at end of 1999, I focused more clearly and closely on getting information together. My situation was lucky in that, while undergoing cancer treatment, I had a trusted neurologist treating my MS in a fairly small town. He, my family doctor, my surgeon, and my oncologists all talked with each other about my case and my treatment plan. For the first time, I thought of them as a team—a team of physicians who could help me.

“The cancer treatment, especially the radiation, really magnified my fatigue, even more than the MS already had. I lost a little bit of my function in my legs. I wasn’t quite as agile as I was when using the scooter. By 2002, I was using a wheelchair full time.  I began a monthly infusion of Novantrone for MS but, unfortunately, that medicine was discontinued after 6 months due to ineffectiveness.

“My husband and I started the MSplus Foundation to address the subject of dual diagnoses. The board of directors is comprised of my neurologist, my oncologist, my husband, and friends with extensive experience in volunteerism, leadership, and business acumen. The MSplus Foundation’s goal is to support, inform, and educate people who have a dual diagnosis of MS and cancer.

“Now, one of the ways I can support and educate fellow patients is to facilitate a self-help support group, sponsored by the National MS Society with input from the American Cancer Society. I have been trained by both agencies to do this work effectively and am provided with support and resources from both agencies.

“Today, I am fortunate in many ways. I rely on a wheelchair for mobility, but am able to live at home with the help of my husband and full-time caregivers. We spend our winters enjoying the sunshine in our home state of Texas and our summers reveling in the famous natural beauty of Washington state. My husband and I still travel, volunteer, and have full lives with our children, grandchildren, and many supportive friends. Truly, I am blessed.”
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The MSplus Foundation received 501(c)(3) organization status with the IRS beginning July 19, 1999. [EIN = 91-1992981] Disclaimer. © 2017 The MSplus Foundation. All rights reserved.