April 2, 2007. My pager went off in a meeting. I knew who it was from even before I looked at the message. It was the call I had been waiting for all weekend.
Somehow I think I knew what the message would be. A week prior I had found a lump. At first I told myself it was just residual bruising from walking into an open car door. But my gut gnawed at me to have it looked at sooner rather than later. Two days after my doctor’s visit, I had a mammogram and ultrasound. Friday of that week I had my biopsy.
I placed the return call…”Your biopsy was positive…lobular carcinoma…invasive….” I hung up the phone and just sat at my desk staring at the pictures of my husband and four children; the youngest only 4 years old, the oldest out on his own, a daughter in college, and the third child just entering high school. Her volleyball team had just won an invitation to the USA Volleyball Juniors National Championship. Life had been very good to us. I was 47, had annual mammograms – all normal and no family history of breast cancer. How could this be? I called my husband at work and told him…dead silence for what seemed like an eternity. I don’t remember crying that day. I remember thinking, “It is what it is…now I need a plan to get through it.” I cried that night after everyone had gone to bed. It was then that I realized I needed to be in control to get through this journey and that feeling sorry for myself was not beneficial.
Being a nurse, I had already walked through the “what if” in my mind. Mary Washington Hospital had started a Cancer Navigator program January 2007. The Cancer Navigator was a friend. Our conversation started, “I never thought I personally would be taking advantage of your services. Where do I go from here?” By week’s end I had met with Dr. James Daniel, the medical director of the Cancer Navigator program, the Cancer Navigator, and a surgeon. My medical care team was to include a surgeon, a medical oncologist, a plastic surgeon, and a radiation oncologist. I was ready to move and move fast.
Telling the Family
I would not formally announce my diagnosis until I had a plan in place. It was very difficult interacting with my children, family, and friends knowing that they were unaware I had breast cancer. I did not want pity; I have always been the strong one. I did not want tears; I wanted support. Breast cancer was a diagnosis….I was still very alive…and was determined to do any and everything I could to beat it. My husband and I decided that I would tell the three oldest children, “I have breast cancer…It is what it is…it’s all good…we have a plan….it will be a long journey to get through it…chemotherapy and surgery…I have very good doctors…our love and faith will get us through this…I love you.” The message to our youngest was that I was sick, but I had good doctors helping me to get better.
The Journey Begins…Keeping it Positive
My visit to the surgeon led to more diagnostic testing...a breast MRI and another biopsy of my right breast. I remember thinking, “I could start feeling sorry for myself right now that would do no good.” Harry S. Truman once said, “A pessimist makes difficulties of his opportunities, and an optimist makes opportunities of his difficulties.” My opportunity was to face the challenge head on and make every effort to beat it. My follow up appointment with the surgeon led to yet another diagnostic test, a PET scan which thankfully was negative as was the right breast biopsy. Armed with this information I was anxious to schedule my surgery and have “it” removed.
Our conversation started, “I never thought I personally would be taking advantage of your services. Where do I go from here?”
While I wanted the tumor removed as soon as possible, conversations with my medical care team and other friends that were breast cancer survivors, taught me that the best treatment option for me was not immediate surgical removal of the cancer. It was at this point that I began my quest for information about treatment alternatives.
Getting the Facts
The tumor had been large, about 5 centimeters. Because of its size, it was recommended that I receive chemotherapy prior to my surgery (neoadjuvant chemotherapy) to shrink the tumor size. My initial visit with my medical oncologist led to a bone scan (no metastasis or spread of disease) and an echocardiogram (to ensure that my heart was healthy enough to receive the recommended chemotherapy.) Done….what next?
In an effort to prepare for the “journey,” I read everything I could find about breast cancer and the treatments. Knowledge is power and power is control! I continued in my attempts to remain positive. Although mentally I understood how chemotherapy worked, I did not have any personal experienced. “Cancer” brings a visual picture to mind, as does ‘chemotherapy” with nausea, vomiting, and hair loss. To get ready for this part of the journey to wellness, I went to a hair dresser that several breast cancer survivors recommended. I cut my hair a bit shorter and got her advice on wig styles and colors. When my wig came in, she styled it to match my pre-chemo hair style. Still in control---next?
I remember telling a professional colleague that I had just been diagnosed with breast cancer and that I was to receive 4 cycles of chemo followed by at least one surgery, 12 more cycles of chemo, and possibly radiation. Her response was to take one step at a time to make it more manageable. I took her advice and as I traveled through the treatment journey, I would tell my friends and family, one cycle of chemo done, only three more to go and so on. Somehow, measuring the time of the journey did seem more manageable using this approach.
I received my first cycle of four cycles of Adriamycin and Cytoxin (chemotherapy) two weeks apart. If all went well, I would be done with chemo by mid June, in time to attend my daughter’s national volleyball championship. As a nurse I had explained what to expect from chemotherapy to many patients; I was now the patient. I did not sleep at all the night before my first dose. I now understood the fear and uncertainty that all of my patients experienced prior to starting this treatment.
The day after my second round of chemo, my hair started falling out. I knew that the hair loss would make it “more real” for my family and friends, especially our four year old. I pulled it out gently until it was almost all gone. To gain some sort of control over the situation I had my oldest daughter take me to the hairdresser. We took the youngest with us. He helped to shave my head... “Mommy’s head is fuzzy.” Half-way through the first phase of chemotherapy!
The remaining two cycles were completed. I did get tired and some days it felt like an 18 wheeler had run over me; bone and muscle aches and fatigue. I was fortunate that I did not suffer from the nausea and vomiting that occurs with so many others. I was able, with the support of my family and colleagues at work, to continue to work while receiving chemotherapy treatments. Work provided an outlet and distraction from being a patient allowing me to feel “normal” and another way that I was able to maintain some sort of control over what was going on with my body. Traveling to Minnesota to watch my daughter play in her Volleyball Championship also gave some feeling of normalcy.
A Bump in the Road
I made the decision to have reconstruction after my surgery. I sought medical opinions from several providers and made the decision to have my surgery done in Northern Virginia. On July 18, I had a simple mastectomy with initial reconstruction. A biopsy of my lymph nodes was taken during the surgery to determine if the cancer had spread. If positive, I was to undergo a removal of the lymph nodes under my arm. When I woke up, I was told that the initial node was negative so the second part of the surgery was not needed.
Complications arose just prior to my discharge the day after surgery which required a return to surgery. I was discharged home but received a call from the surgeon indicating that upon further review, one of the four lymph nodes removed was positive. I would need yet another surgery, this time to have the lymph nodes under my arm removed. Hearing that the cancer cells had spread to a lymph node could have been an emotional set back. My strength to this point in the journey had been to take it one day at a time, my mantra, “It is what it is”…now what? I went back to surgery for an outpatient procedure and by the end of the week I learned that all of the nodes that were removed were negative. There was no more cancer in me!
I was still recuperating from the three surgeries, but anxious to start my second round of chemotherapy of 12 weeks of Taxotere on a weekly basis. Again, I went through this phase “one treatment at a time, one down, eleven treatments to go.” This was a tiring experience; weekly doctor appointments, blood tests, and chemotherapy treatments with fatigue ever present. At the end of this period, I remember at one point saying to my husband, “I’m done with this!” I was always the one who provided care and nurtured others, coordinated the schedules of the family, car-pooled the children to their activities, managed the household. I was not accustomed to having anyone take care of me. One doctor told me at one visit, “It’s all about you now…your needs are first, take advantage of it and let others help you.” While this was difficult, I realized that in order to continue the treatment journey, I needed to take advantage of all offers to help. Friends are a blessing and greatly helped me through the journey as I still need to have radiation treatments.
Getting Back the Positive
The day I finished my last cycle of Taxotere, I asked when I could have my IV access removed. I was told I could do so at any time. The next day when I went in to pick up paper work from the office, my doctor told me he would have his staff make the appointment for the catheter removal for me. I told him that I had already done so, and that it was scheduled for the end of the week. He smiled…I smiled...I was still taking control.
I met with the radiation oncologist and determined I needed 33 radiation treatments which meant daily trips for treatment. Once again, I told family and friends, “It is what it is and it’s all good.” Although I was tired and sometimes weary, I knew that the end of the treatment journey was in sight. I started radiation December 5th and my last treatment was January 23rd.
I had my remaining reconstructive surgery in May of 2008. Over a year of doctor appointments, chemotherapy, surgeries, and radiation therapy…but the cancer was gone! While we celebrated the end of this phase of the journey, the new phase was the ongoing follow up check-ups and scans. This phase brings new challenges and concerns. What if the cancer returns? If there is one thing that I realized during that period, it is that nothing is ever certain. Every day is a gift. Life is precious and should be cherished and shared with those you love most. With each follow up scan or diagnostic test, there is a “what if” thought that crosses my mind. Initially, it would almost haunt and paralyze me. Four and a half years have passed since my breast cancer diagnosis and the “what if” is still there. My support system is great, my faith is strong, and my belief that “it is what it is” keeps me going daily.
Nancy Tighe is an RN, BSN, CSHA Manager, Licensing & Accreditation & Risk Management with Mary Washington Healthcare. She is a wife and mother of four children. Nancy is also a breast cancer survivor of nearly 5 years.