Barbara Raksin

When the Caregiver Becomes the Patient
When I first started taking the journey with many of my patients, serving as an advocate, educator and navigator, I often wondered how I would handle the diagnosis of breast cancer. I sat in awe of these women because of how bravely they dealt with the day to day experience of being a cancer patient. There are so many decisions to be made and much information to be absorbed. Type of surgery, lumpectomy vs. mastectomy. If mastectomy and reconstruction, what kind of reconstruction. Treatments such as chemotherapy, radiation, hormonal therapy and the side effects of each.

My turn came in November of 2004, when in the shower doing breast self-exam I felt a lump. It did not feel like my usual cysts. I left for work shortly after, stayed calm and thought about the next steps to take, while listening to Bach on the car radio. I felt as though I had practiced many times before, going through the same scenario with patients for years. At the end of the day, I had an exam and imaging of the area, followed by an ultrasound guided core biopsy. Waiting for the biopsy results was the most difficult time. It almost felt like an out-of-body experience; like this was not happening to me. At this point I realized I had gone from being the caregiver to being the patient.

I found it difficult going home to tell my husband that I just had a breast biopsy and was sure all would be fine I knew deep down our lives were about to change. When I found out the biopsy results the next day, I had a difficult time sharing them with my husband and three adult children.

I was beginning to feel more and more like a patient and less like a caregiver. Being normally a very private person, I was unable to pick up the phone and call friends to tell them I had just been diagnosed with breast cancer. It was extremely difficult to share my diagnosis with past patients. However, they were able to tell something was wrong when I began wearing a wig, and were deeply concerned. I was profoundly touched by their expressions of love and support. They seemed to worry about my support system. After all I was their support and who would I have?

My support came from many of my patients, friends and family, especially my husband and children. My work family whom I spend each day with were wonderful to me. I have always tried to be a source of strength for my patients. My own experience has given me a greater understanding of their needs and the difficulties they face relating to their family and friends at the time of diagnosis.

After having a lumpectomy and sentinel lymph node biopsy, I went on to have chemotherapy. I did well during chemotherapy. I was not really sick, just more tired than usual. As my husband reminds me often, I never missed a meal! I craved foods I did not usually eat, especially pickles, much like being pregnant!
Dealing with hair loss (head, eyebrows, lashes, and body), as a side effect of chemotherapy, was difficult at first. One good thing, I never had to shave my legs! Shaving my head when my hair began to fall out worked for me. I had always recommended this to patients. My scalp became very sensitive and sore as I lost my hair. Shaving my head relieved some of this discomfort.
The first time I wore my streaked blonde wig to work was the most difficult thing I had to do. I was feeling very insecure about my appearance. My wig was totally different than my own hair, which was very short and dark with natural gray streaks. People walked by, not recognizing me, not all bad! A few people made insensitive comments even when my hair was growing back. What an education! Hair loss is very visible, identifying you as a cancer patient.
It was as difficult to stop wearing my wig as it was to start wearing it. Once my normally straight hair started coming back curly, chemo curls, I was asked if I were wearing a new wig! While dining out with my husband one evening, someone we knew was sitting across the room. They almost fell out of their seat trying to get a look at my husband’s “new” blonde girlfriend! The makings of a Saturday Night Live skit!

My hair was and is still a popular topic of conversation. At one time I had three different identities...1-license-picture in my wig, 2-passport and hospital ID-the old me, 3-a magazine article and picture-chemo curls.

Patients related stories to me about radiation therapy for years. Some told me it was frightening lying on the table alone in the treatment room. Radiation does not hurt and is over in a few minutes. Daily radiation was a constant reminder that my journey continued and my fight to leave breast cancer behind was not over.

I worked during treatment, keeping my life as normal as possible, taking a few days off after each chemo treatment. I have always encouraged patients to keep their lives as normal as possible by staying active. Being at work during treatment and being there for my patients helped me to feel better, both emotionally and physically.

It took awhile for me to share my diagnosis with new patients. I now share my experience with most. We instantly bond, actually beyond bonding, almost like an exclusive club! Giving bad news is much easier for the patient when I share with them that I am a survivor. They always thank me for sharing. By sharing my experience I am better able to help patients face their own diagnosis and treatment. They see that I have been through treatment and I am fine.
As a caregiver, you should always carefully listen to your patients. As a survivor, there is a fine line between real and imagined symptoms. When to call your doctor may not be an easy decision. When one becomes a cancer patient, most new aches an pains become worrisome. At times being a survivor is difficult.

The answer to my question...how would I handle a diagnosis of breast cancer? A diagnosis of breast cancer does not have to be a bad thing. We make wonderful new friends, learn we can take long journeys, rise to the occasion and become a stronger, more compassionate person. One of my young patients told me her life became better as a result of having been diagnosed with breast cancer.

One last thing...Actually, my breast cancer saved my life. I was found to have an elevated blood calcium level. My oncologist and internist spoke and decided to have me scanned. A primary lung cancer was found as a result of the scan. The lung cancer would not have been found as early This took place in December of 2005. Yes...more surgery and more chemotherapy, but I am here to tell the story!

 

Barbara Raskin has been the Clinical Nurse at The Sandra and Malcom Berman Comprehensive Breast Care Center at GBMC since 1997.

Ms. Raksin began working with breast cancer in 1981 as a founder and facilitator of the NEED Breast Center Support Group in Baltimore. Seven years later, she was hired by LaSalle Imaging, where she served as nurse manager and practice representative.

Ms. Raksin has spent many years as a volunteer for Komen for the Cure, being awarded the prestigious Cameo Award, a national award that recognizes a volunteer who has made an exceptional contribution to the local affiliate. She has served two terms on the Komen for the Cure Board of Directors, Maryland affiliate.

Ms. Raksin was honored in 2001 by Maryland Public Television at their 2nd annual Speaking of Women’s Health Conference for her contributions to the community.

Ms. Raksin received a 2004 Health Care Hero Award, awarded by The Daily Record.

Ms. Raksin was one of 38 women recognized as a SHERO Award honoree in 2007. The SHERO Award celebrates women and their impact on the local community and those who, through their time and contributions, have touched the lives of others.