Hundreds of women from throughout South Jersey attended this year’s Camden County Women’s Health Conference at Eastern High School on April 21. Cooper University Hospital had a strong presence at the event with Cooper for Women and The Cooper Cancer Institute manning back-to-back booths filled with free health information and Cooper giveaways.
Rosemarie Leuzzi, M.D.; Kathleen Heintz, M.D.; and Mary Whitener, R.N., from Cooper University Hospital, spoke at several disease-specific sessions at the event, educating more than 200 women about diabetes, heart disease and cancer.
Dr. Leuzzi spoke about “Understanding Diabetes: Especially in Women,” providing information from identifying diabetic symptoms to what you need to know to take care of yourself or a loved one with diabetes. Ms. Whitener presented on “Breast Cancer Prevention Research Study Update,” reviewing the key findings from breast cancer prevention studies regarding Tomoxifen and Raloxifene. She also discussed the National Cancer Institute’s sponsored study regarding the effectiveness of Letrozole in reducing the incidence of invasive breast cancer in women who are at increased risk for the disease.
The event’s keynote speaker was Lisa Thomas-Laury of WPVI-TV’s "Action News." Having been diagnosed with POEMS syndrome in 2002, she recounted watching the symptoms mount and the months of treatment that soon followed as the disease attacked her body. We are proud to share her inspiring story of hope and survival which she told to an audience of nearly 2,000 at this year’s conference.
"I felt it was important for me to be here today, not only because of what I have been through health-wise, but because of what my health challenge has taught me. If you are healthy and strong, raising your children, living your life, you never expect a major setback; you never think a health crisis will strike you.
I was probably in the best health of my life when I noticed the first signs of trouble. I was exercising regularly, working out with a trainer, power-walking, swimming. I was at the height of my career at Channel Six.
And then I noticed a strange numbness – a tingling in my toes and feet. What did I do? I did what probably most busy career women with two teenagers would do: I ignored it.
I am reminded by my colleagues that I was holding on to the walls as I went about my work, and even grabbing the first person in my path to keep my balance, as I raced to meet one TV deadline after another.
I remember thinking for the longest time that I probably had developed some bad calluses on my feet and just needed a good pedicure to resolve my problem.
When the pedicure produced no results, I saw a podiatrist, who gave me cortisone shots between my toes. The cortisone helped with the pain, but after several series of shots, my numbness and tingling worsened.
What I would realize later as I did my regular workout, was that my ankles were weakening – a fact that was soon even more painfully obvious when I went for my next power walk and could barely make it up a neighborhood incline that had been the easiest endeavor just days earlier.
My husband, a doctor himself, arranged for me to see a neurologist, who after administering several tests, including an EMG, a nerve conduction study, determined I had some nerve damage. The questions were why and how could we stop it?
I went from one doctor to another, and finally to a friend of my husband’s, who had been his mentor in medical school. He told me he thought I had a rare illness, called POEMS Syndrome, like a poem with rhyming verses, except this POEMS is an acronym, with each letter representing a symptom of the disease:
P for poly-neuropathy
O for organomegaly (or enlarged organs)
E for endocrinopathy (changes in the endocrine system)
M for monoclonal gammapothay (or irregular blood protein), and
S for skin changes
I already had 4 of the 5 symptoms, and would soon have them all, but this particular doctor told me he had seen only five patients with POEMS in his entire career, and he wanted me to see an expert in the field at Johns Hopkins Medical Center. I made the trip to Baltimore and Johns Hopkins, where after more testing, the doctor there dismissed the POEMS diagnosis and told me I had something similar called CIDP, or chronic inflammatory demyalinating poly-neuropathy. He suggested I take prednisone and begin a blood cleansing treatment called plasmapheresis.
I underwent the treatment for 18 months, as my condition slowly worsened. Of course, it was difficult to determine this initially, because the steroids – the prednisone – gave me such spurts of energy, I would occasionally think I was doing better. That was until my vocal chord became paralyzed, and I became unable to adequately digest food.
I think it’s important to mention here that by this time I had to make the very difficult decision to leave my job and focus entirely on my health. And as it became necessary to file for disability, I discovered I first had to file for social security. After filling out a two-inch pile of forms, I began to wonder how on earth other people less fortunate than I, without the same resources, or even with the same low level of energy, could process all the paperwork that was by now becoming extremely overwhelming.
How could that elderly woman, living alone in Camden or West Philadelphia, or South Philly know the right questions to ask the many doctors I had seen? How could she know which one of them to believe – I wasn’t even sure of that!
I remember making a promise to God that if I made it through my illness, I would find a way to help people understand, tackle and defeat the same obstacles that were now confronting me.
I was in Florida, with my mother, at an alternative health facility when my illness took a dramatic turn for the worse. I became severely nauseous and dehydrated and was hospitalized for a week. Two days after being discharged, I became sick again and was hospitalized for a second week.
It was then that I became forever grateful for hospital volunteers!
I remember the second time I was hospitalized, I had spent five hours in the Emergency Room, and then when I was finally admitted, the nausea and vomiting continued.
Days passed and the doctors couldn’t figure out what to do. One afternoon, a hospital volunteer stopped by my room as I was going through an especially bad spell, and began rubbing my back, and talking to me in the most calming and soothing voice I had ever heard. This man was a godsend at that moment; and later he was the one who discovered that a painkiller I had been prescribed was exacerbating my nausea. On the advice of the volunteer, my doctor then changed my medication and I slowly began to feel well again. But when I returned home my condition was still a mystery.
It was around this time that I learned a valuable lesson about people and the human spirit: my housekeeper of nine years and I formed an unlikely friendship during my illness; before, she was merely my employee, and I her employers…however, I would discover just how kind and helpful, and compassionate she would be toward me, when I was ill …..it made me realize that you must look within every person you meet.
I was told by my doctors that I was improving; that it was just a slow process. But I knew in my heart that was not true.
As a doctor in another specialty, my husband was terribly frustrated. I was beginning to become rebellious. I was fed up with depending on others telling me how I was feeling, how I was looking, how I was walking better — when I knew otherwise.
After one more very bad stomach illness and my unyielding insistence that I was NOT getting better, I was referred to the Mayo Clinic in Rochester, Minnesota.
I was seen by a wonderful oncologist there who subjected me to a week of testing and then without hesitation told me I was suffering from POEMS Syndrome! …the illness that I was first diagnosed with nearly two years earlier…the diagnosis that was so abruptly dismissed by the doctor at Johns Hopkins. The doctor at the Mayo Clinic then told me something that I think I already knew, but didn’t want to believe – POEMS Syndrome was “shutting me down” as she put it, and I needed a bone marrow transplant as soon as possible.
I had the transplant in 2004 and have made significant progress ever since.
So what have I learned from my experience?
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That we should live our lives to the fullest, each day.
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That we should really not sweat the small stuff.
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That we should listen to our bodies and take care of our bodies – giving ourselves the proper rest and food.
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That if something doesn’t feel right, get it checked out – NOW –don’t delay.
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That we MUST be strong advocates for our own healthcare.
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That if we don’t feel comfortable with a particular doctor, if we don’t like his tone or bedside manner—if he or she doesn’t show us respect, tell them so and leave, and don’t come back!
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I’ve also learned that we have to look at the people around us, those we see every day and put ourselves in their shoes! Try to understand them and show them compassion.
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And above all, we MUST continue believing in ourselves, no matter what.
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Each of us has a right to a happiness that transcends all the materialistic forces that surround us.
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Each of us has a right to a joy that we nurture and sustain from the wellspring of our beings; we must learn to live our lives to the fullest.
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We also have to learn to forgive ourselves, because if you really think about it, an apology isn't worth much if we aren't able to forgive ourselves first.
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We must love ourselves, and that love must be internalized...you can't give love if you don't have love to give, and you only have love to give if you love yourself.
I want to thank you again for having me here today...and I wish all of you happiness, joy, forgiveness and love this morning."