TO EXPERIENCE IT IS SOMETHING ELSE
By Karen Woolf, R.N., M.S., ANP-BC
Volume 2, Issue 1, Summer 2013, Cancer InCytes Magazine
Cancer has a way of sneaking up on you. It follows no schedule, keeps no appointment. Its poetry is tragic; its humor dark. Karen Woolf had been a caregiver for cancer patients for over a decade before she was diagnosed with breast cancer. Once the pillar of strength, she learned to lean on others. She realized that not everyone has access to the knowledge and treatment that she had, which gave her a deeper appreciation for others who had to face cancer, and made her a fervent advocate.
“‘We need you to come in for a diagnostic mammogram.’ ‘What? Sure.’” Nothing could be wrong after 18 years of having routine mammograms, monthly breast self-exams, and no family history, right? I teach other women breast self-exams during their well-woman exams! It must be just an artifact. I’ve been called back for fibrocystic breast anomalies before. No big deal!
I found myself sitting in the radiologist’s office. “We have found calcifications in your right breast. We need to do a biopsy.” I couldn’t believe my eyes as I looked at last year’s films compared to this year’s. Are they sure they didn’t get my films mixed up with someone else’s?
It’s December 18th. I better just get this biopsy over with so I can enjoy my family over the holidays. One week later, “You have breast cancer.” Seriously, is this really happening to me? This is so surreal. Merry Christmas! Oh, by the way, I have breast cancer?!
These were all the thoughts running through my head at the end of a busy 2011. For a few weeks, I would walk around in a daze. Always being the caregiver, the one that comforts everyone else, I was the rock of the family. Besides, I feel great and I certainly don’t have time for this. I opted not to tell anyone, but my son and my mother, until after the holidays.
It’s hard to describe how surreal it is to be told you have cancer. I was told I had DCIS, ductal carcinoma in situ. I kept telling myself that if you have to have breast cancer, this is the kind you want to have. But still, to be a member of that club was certainly not my choice. I didn’t feel like I should be frightened, concerned or nervous because my disease wasn’t as bad as those in the women who had more advanced cancers, to whom I had provided care. But, I was…. And now, I almost felt guilty. Such mixed emotions that surged through my mind!
The holidays were over and I went into automatic pilot mode. I needed to get things done. January was fast paced with consults, tests, MRIs, interviewing surgeons, oncologists and plastic surgeons. I was so grateful for all my medical contacts in the industry. Being in the healthcare field, I had the connections to find the best resources. I had worked as a nurse for a hospital system in Scottsdale for over 20 years. I knew the OR nurses, oncology nurses, and they had seen results and outcomes. Being a Nurse Practitioner for over 15 years gave me the insight into physicians as well. My decisions were made and dates were set.
I opted for bilateral mastectomies. I had different opinions from surgeons ranging from one sided mastectomy to lumpectomy. Although the cancer was only on the right side, the MRIs showed that it was in all four quadrants of the right breast. Pathology reports showed some necrosis and I was slightly estrogen receptor positive. There were no palpable lumps, or irregularities in the architecture of the breast. I simply wanted to do whatever it took to have the best chance of being cancer free and remain that way.
Some of my friends thought I was being too radical in my treatment plan. Although I appreciated their love and support, this was my decision and an important one. Everyone has choices and this was mine. I also had seen cancer raise its ugly head many times in my professional career when you least expect it. Cancer doesn’t always follow the rules or the published statistics. I was 57 years-old and otherwise healthy, with the rest of my life ahead of me. My family was supporting me and I was going forward.
You would think taking care of cancer patients, helping them with decisions, giving them and their families support and education over the years would have prepared me for what was about to happen. I had no idea what it was really like to be on the other side of that bedrail. Approximately 6 weeks after my diagnosis, I was having a 6 hour surgery to remove breasts, sentinel lymph node biopsies and have spacers inserted for future breast reconstruction.
I wasn’t frightened or prepared. I was amazed how much the human body can go through and tolerate. The most difficult part for me was being dependent on others for care. I went home with 4 Jackson Pratt drains, dressings, and medications for pain, muscle spasms, and nausea. I couldn’t raise my arms, get out of bed without assistance, bathe, and shower or do all the things we do daily and take for granted. Now, I was helpless! It was distressing to me to have my elderly mother and my son see me this way, which wasn’t going to change for several weeks. I was more concerned with what a burden I had become. It took me several weeks to figure out something very simple. Let people care for you and do things for you because it makes them feel better too.
My SLN (sentinel lymph node) biopsy was negative. I did not have to have chemo or radiation. My oncologist did not think I would have any benefit from Tamoxifen as well. I had stopped all hormone replacement therapy when diagnosed. I was given a 98% cancer free cure from the surgical choices I had made. I was fortunate to find my cancer early and have a very positive prognosis.
Next was the long journey of reconstructive surgery. Although it was long and difficult from a physical standpoint, the end results were good. Five surgeries and many visits to the plastic surgeon later, I felt whole again. The best part, I’m cancer free and I wouldn’t change any of the decisions that I made along the way. It was tough, but worth it.
I have always been a caregiver. My compassion and empathy towards human life comes naturally to me. From this experience, I have gained so much more insight, respect, and appreciation for women with breast cancer. What I endured was only a small part of what thousands of women go through daily in order to survive this disease. I have learned so much from my “pink sisters.” Their resilience, courage, hopes and support for each other is never ending!
I am thankful to my family, friends and employer for their support through my journey. I had great health providers, and health insurance. Not all women are as fortunate as I am. Breast cancer affects women emotionally, mentally, physically, spiritually, financially and socially in many ways. Increased awareness of breast cancer and support of cancer research will continue to be an important agenda of mine.
Karen Woolf, R.N., M.S., ANP-BC has been a nurse practitioner for 17 years and has been caring for patients, including those with cancer, for over 30 years. Her son, Eric Woolf, is a cancer researcher and shares his caregiver perspective in this same issue of Cancer InCytes.