Diagnosed in 1980 with Hodgkin's Disease as part of a large family cluster, Debra became an oncology nurse in 1991. In 2005 she was selected by the Oncology Nursing Certification Corporation as the Oncology Nurse of the Year. Just two weeks after receiving this prestigious award, she diagnosed herself with breast cancer. Debra is currently on leave from Stanford University Hospital and Clinics where she is the assistant patient care manager for the inpatient hematology-oncology unit. She is in treatment for metastatic breast cancer caused by her treatment for Hodgkin's Disease 28 years ago. Debra lectures and writes widely on issues of cancer survivorship and is a member of the core team that developed the award winning The Cancer Survival Toolbox (available free at www.canceradvocacy.org )
Both Sides of the Bed
I have been living with cancer for a long time – 28 years. I was diagnosed with Hodgkin’s Disease, a type of lymphoma, in 1980 while pursuing a law degree. I was the third person in my family to be diagnosed with this type of cancer, but I was not the last to be diagnosed. Three years later, my younger sister Terri was diagnosed shortly after graduating from Grinnell College. Her experience of being treated without the benefit of health insurance was the compelling reason I became an advocate for cancer patients and was the reason I decided to change careers.I returned to college and obtained a degree in nursing. I have been an oncology nurse since 1991.
When I started out as a young nurse, I was not sure whether I should share my history of cancer with my coworkers or my patients. One of my patients “outed” me. I was drawing blood from Jerry’s central line one morning and he noticed the MedicAlert bracelet I was wearing.He flipped it over and read the inscription on the back:“Hodgkin’s Disease, allergic to penicillin, organ donor.”I was in the middle of a sterile procedure so could do nothing to stop Jerry from satisfying his curiosity. A short time later, I was standing at the medication cart outside his room and overheard him talking to his wife on the telephone. “You have to meet this nurse. She had cancer and now she is working here on the oncology unit. When can you get here?” He was obviously very excited about the fact that I had a cancer history. I still had my doubts about sharing my diagnosis at work. Jerry and his wife convinced me that my story was inspirational for them. They felt I was an example of someone who was able to do something positive with their cancer diagnosis. It made me think about why I decided to become an oncology nurse.
When I was treated in the 1980’s, cancer was still in the closet. Most people did not share the fact they had cancer and I attended some workshops where it was common for people to ask whether cancer was contagious. I did not like the way I was treated as a patient. I was not asked to participate in decisions about my care. I was expected to do whatever the oncologist told me to do and not complain about it. When my blood test showed low counts, my oncologist used to sigh loudly and express his disappointment that my treatment would have to be delayed. I always felt as if I let him down when that happened. I tried not to “bother” him unless I was desperate. This led to a few trips to the emergency room as I waited until my pain was unbearable before calling the doctor. One incident I remember is when I thought I had many bug bites that were getting infected and painful. It was actually shingles and progressed to a bad case of herpes zoster encephalitis. Again, my oncologist acted as if I had done something to disappoint him. Treatment was delayed again.
I wanted to help patients feel that they were the most important member of their healthcare team. As a nurse, I wanted to make sure patients understood what was happening to them, what they should expect as side effects of treatment, when they should speak up about symptoms and how to advocate for themselves. One issue that was very important to me was that of fertility after treatment. No one warned me that my cancer treatment could cause infertility and I remember feeling very angry when I was told at the end of my treatment that I probably would not be able to get pregnant. In fact, I was told I was probably going to endure menopause at age 25. I started doing research on this topic and became a speaker at cancer conferences, attempting to educate physicians on the importance of this issue to their young patients. I have continued to educate patients and healthcare professionals on this topic and on other issues that affect young cancer patients: intimacy and sexuality, dating after a cancer diagnosis, financial aspects of living with cancer, long term and late effects of treatment.
Over the years, I have heard my coworkers make some insensitive comments.The one that always irritates me is when a nurse makes a statement such as, “If I was ever diagnosed with cancer, I would just want to die.I don’t think I could go through treatment.”My answer to that is you never know what you can do until you are faced with the situation.Given a diagnosis of cancer, I doubt whether many people would decide to die before trying any type of treatment.Treatment sucks.I am not saying it does not.I know so many patients who have found the inner strength to go through treatment and have lived years beyond their diagnosis.Cancer profoundly affects everyone connected with the diagnosis.Sometimes great things happen because of a cancer diagnosis.The National Coalition for Cancer Survivorship was started by a small group of cancer patients who changed the vocabulary of cancer by coming up with the concept of cancer survivorship as living with, through and beyond a cancer diagnosis.In 1987, when I first became involved in NCCS, I told people I was tired of being a patient.I was, in fact,impatientwith the way people with cancer were being treated.Other survivors have started equally impressive organizations.The National Collegiate College Foundation, Lance Armstrong Foundation, the National Breast Cancer Coalition, Living Beyond Breast Cancer, PanCan, the Ovarian Cancer National Alliance, the Patient Advocate Network and countless foundations – all of these organizations were started by patients who wanted to make life better for those diagnosed after them.This is life on the other side of the bed.We work to make life better for those who are diagnosed today.Survival rates should improve over time.Treatment options should improve over time.Access to quality cancer care should be guaranteed to all Americans who need it.My ultimate goal, as a survivor and as a nurse, is to see true healthcare reform so that anyone diagnosed with cancer knows he or she will receive the best possible care without having to fear financial ruin in the process.
Often one website will refer you to another site with more information on healthcare reform or access to health care. The time for change is now. I have been waiting 28 years and that is 28 years too long.