My journey into the unknown world of breast cancer started on a warm day in May 2005. I had finished my water aerobics class after a long day at work.  As usual, when I finished my class I swam some laps, just to get in a little extra exercise.  My water aerobics instructor suggested I do some pull-ups.  She did the same pull-ups right beside me and encouraged me to do more and more, even as my shoulders and arms were protesting.  The next day I was palpating my neck, shoulder and upper arm muscles when I felt a firm bump way up high on my chest.  I simply attributed it to doing too many pull-ups.

The bump didn’t go away, so the following week I made an appointment to see my physician. She palpated it and wrote a prescription for a mammogram and ultrasound to “rule out a mass.” Since I had had my last mammogram just eight months before, I didn’t considered that this bump could be breast tissue, but felt it was related to my exercise.  I watched the ultrasound and tried to “read” the technician’s and later the radiologist’s face and expressions.  The radiologist said he would recommend a biopsy to rule out any problems.  But even that didn’t worry me since I had other cysts before.

The radiologist who did my biopsy said, “This will have to come out,” so off I went to a surgeon. The all-important pathology report was due in 10-14 days, and at the end of the second week I became rather insistent with my doctor’s office, telling them I needed to hear something from the doctor that day. I told them, “I’m not waiting another weekend, worrying about this.”  She said the doctor was at the hospital all day.  I asked her to give me call and then fax me the results.

Within the next 30 minutes, while standing at my office fax machine, I saw a fax coming from the doctor’s office.  I remember telling my secretary that this was “great news…The doctor hasn’t called me and the office is faxing it…that means it is negative!” When asked what the fax said, I read it out loud, in horror: “invasive ductal carcinoma, grade 3, triple negative.” I didn’t know what triple negative meant, so entered it in the search engine and immediately found statements that really scared me: “worst prognosis, no treatment beyond chemo/radiation.”

The visit to the surgeon was frightening. He said the cancer was very aggressive and I needed surgery right away.  I was scheduled to attend a case management conference in Orlando. I went to the conference, still in shock.

A volunteer from the Buddie for You program supported by the Susan G. Komen breast cancer organization came to my office the day I was to leave for the conference and gave me a whole goody bag of things to read. But more important, here was a woman who had been through the disease – and she looked great! How encouraging that was!

Next came the surgeries ­– quadrantectomy, insertion of a port, total axillary node dissection. Most of it was surreal. I met many different providers: surgeons, medical oncologists, radiation oncologists, chemo nurses, all kinds of technicians.  Some were very good, some were not.  I began journaling and sending my “updates” to all my relatives, friends and colleagues.  I asked some good friends to accompany me to appointments because they could repeat and discuss what I thought I heard. I found this very helpful since it seemed like the doctors were talking about someone else, not me. None of it seemed real.

The past seven years have been a roller coaster of emotions and medical procedures followed by close medical follow-up. I have seen the other side of the health system and have been frightened by its lack of coordination and sometimes 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 major overhaul. My experience when I finished active treatment was that there was no organized medical rehab specific to my situation of immune dysfunction.  All I knew was that I wanted to be as close to my “old normal” active, athletic self as possible.

I worry about the other patients I see who have no family and friends to advocate for them. Many of them ask no questions and appear overwhelmed. After finishing active treatment, I realized that participating in the Buddie for You program helped me heal. So today I help coordinate this program, assigning volunteers who work one-to-one providing support for the newly diagnosed breast cancer patient. No one should have to go through this journey alone.

After all the flurry of active medical treatments has ended, patients need supportive care and not just monitoring for recurrence. The spiritual, emotional and wellness side of managing the disease is forgotten or left up to the patient.  I am very glad that I am in a position to help others, both as a case manager and also as a seven-year survivor.

In good health,
Marilyn

About Marilyn Van Houten
Marilyn Van Houten, R.N., M.S., CDMS, CCM, is president of and case management consultant for Rehabilitation Case Management, Inc.  Her breast cancer has been in remission for seven years.  Marilyn volunteers for “Buddie for You,” a collaborative effort of the Susan G. Komen Race for the Cure, Miami/Ft. Lauderdale and Your Bosom Buddies support group. Marilyn is active in other breast cancer advocacy programs and is an ambassador for the Breast Cancer Recovery Foundation.

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As a part of our mission to make The Journey a powerful voice for everyone in our community, we invite each of you to consider joining the conversation and sharing your journey with comments and feedback.  You don’t have to be a breast cancer survivor, you can be a caregiver, or a friend, or a concerned citizen. What we are looking for is meaningful and helpful conversations that will encourage other people as they travel along their journey. Sharing is caring and very cathartic. I sincerely urge you to take part.