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September 2007 Featured Member

September 9, 2007
by Marilyn Van Houten, RN, MS, CDMS, CCM

My journey into the unknown started in May, 2005. After a long day at work as the owner and consultant of a small case management company in Miami, I attended my water aerobics class and swam some laps. I did this often, not only for the exercise, but to de-stress after a hectic day spent managing 30 case managers and tackling an assortment of duries. To further enhance the day's workout, my water aerobics instructor suggested I do some pull-ups using a started block in the pool. Right by my side, she urged me on despite my protesting body and futile attempts to quit. Needless to say, it was quite a workout.
The next morning, while massaging my achy neck, shoulder and upper arm muscles, I felt a firm bump high on my chest. I attributed it to my strenuous workout the day before. However, the bulget didn't go away over the next week, so I made an appointment to see my primary care physician. After palpating the area, she wrote a prescription for a mammogram and an ultrasound to rule out a mass.
My last mammo had been just eight months prior, so I never considered the possibility that this mass could be breast tissue; I was certain it was related to my exercise. Nonetheless, I carefully watched the ultrasound and tried to scrutinize the facial expressions of the technician and the radiologist. The mammoram revealed that a biopsy was necessary. Off I went to a surgeon for the second of many surgical procedures still to come.
It was while awaiting results from the al-important pathology report that I became rather insistent with my primary Doctor's secretary, telling her, "I'm not waiting and worrying about this for another weekend." I asked that the results be faxed to my home. Thirty minutes later, the fax came through and I felt a glimmer of hope. I thought it would be good news since the doctor hadn't called me! It must be negative! Instead, I read the fax in horror. It said I had an invasive ductal carcinoma, grade 3, triple negative. In shock and with no idea what "triple negative" meant, I entered the results into an online search and immediately found statements that struck me with fear, like "worst prognosis" and "no treatment beyond chemotherapy and radiation."
Yet, despite this horrific news and the unwavering fact that this aggressive form of cancer required immediate surgery, I managed to find some encouragement. I kept my plans to attend the Case Management Society of America's annual conference. On the day I was to leave for the conference, a volunteer from "Buddie for You," a one-on-one support program, came to my office. She brought with her a basketful of goodies and reading material, but most importantly, she brought evidence that women do live through this disease. She was it, living proof standing before me. And, she looked great!
While the impact of meeting a survivor filled me with hope, the surgeries that followed were surreal. I met many different specialists, including surgeons, medical oncologists, radiation oncologists, chemotherapy nurses and all kinds of technicians. Some were very good, some were not.
To track all that was happening, I began keeping a journal and sending my updates to relatives, friends and colleagues. I asked some good friends to accompany me to apointments, which I found extremely helpful. Those who went with me could repeat what I thought I heard, and then help me ask questions. Like I said, non of it seemed real. And the past 19 months have been much of the same, a roller coaster of emotions and medical procedures so drastic that my immune system has been wiped out and has yet to return to normal.
After the flurry of active medical treatments ends, there is a need for supportive care that goes beyond monitoring for reoccurrence. Sadly and all too often, the spiritual, emotional and physical wellness sides of managing the disease are forgotten or left up to the patient to navigate alone. Great support systems and organization for breast cancer patients, like Pink-Link, are out there, but individuals are essentially on their own to find them, as the medical establishment appears too busy with treatment and monitoring.
I have seen the other side of the health system and have been frightened by its lack of coordination and its at times, uncaring personnel. I have also experienced the best of doctors, nurses and case managers working in a system that seems broken and in need of a major overhaul. I worry about those patients who have no family or friends to advocate for them. Many of them ask no questions and appear overwhelmed. Personally, I am thankful for my training and the valuable help I received from other case managers. I only wish that every breast cancer patient had the same support. Case managers have a vital role in dealing with cancer patients. On day, perhaps, as the profession continues to provide essential care, case management will be better recognized for the support and services it offers.
Marilyn's story was originally published in the June/July issue of "Case in Point", a professional organization magazine.

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