It’s my privilege to meet many different people in the course of my surgical practice. All enter my office with a unique background and perspective, but with a common concern for health. Many of these folks find it helpful to keep a journal to record their thoughts and experiences. Others have inspired someone else’s writing. It’s my pleasure to share some of those stories here. You are invited to read these heartfelt reflections and to share your own. I hope they make you pause, think, reflect, laugh, cry, and feeeeeel the connection we share in our journey through life! These stories are not meant to be medical advice nor a substitute for medical advice, they are simply personal stories told by real people… just like you.
HE and ME
October 1, 2014, the door opened and HE came into the room. Oh yes, he is a heart throb. I had not met him or seen a photo but I instantly got why one friend referred to him as Dr. Gorgeous. He had intelligent dark eyes beneath black curly hair, bronze skin and beautifully sculpted nose and lips. With a warm winning smile he handed me a box tied with a pink ribbon, “This is a gift for you from Sara’s project,” he said.
I knew I didn’t want to untie that pink ribbon and open the box. Doing that would shred my denial. Doing that would mean I did have cancer. I didn’t want to have it. I didn’t want to open the box. I hated pink ribbons – especially those in that pink ribbon symbol. I didn’t want to have any connection to that symbol. It’s October and it’s all over the place. I hated seeing it plastered against the outside walls of the stadium, on a 10-story insurance building, in the newspaper, on a coffee mug, on chocolate candy – it was everywhere.
No, I won’t open this box, I won’t. Who packed it? Pandora? Why didn’t you just say Pandora’s box? Who is Sara anyway?
I’m here in this room on the first day of my new insurance. Will they really cover me? Kaiser dropped me – I moved “out of network.” Kaiser wouldn’t cover my mammogram in Bend. I was “Out of network.” That phrase “Out of network” and the phrase “This is the standard of practice” ranks right up there with that pink ribbon. I hated them all. I didn’t want to join this new club – this pink ribbon club. No No No! I’m in the newlywed club. I joined that three months ago! That’s the one I wanted to join. These two clubs don’t go together No No No!
He sat down to converse with us as if we were in his living room and we had a whole evening. Carefully and thoughtfully he explained the possible scenarios. “Your tumor is small and was diagnosed in August. Lumpectomy and radiation go together.” Hmmm I thought, that sounds like “love and marriage go together like a horse and carriage.”
“But wait,” I said “my sister had a lumpectomy and the doctor told her women over 70 didn’t need the radiation.” “Yes that’s true, if they are hormone receptor positive. You are hormone receptor negative – the standard of practice for you would be six weeks, five days a week of radiation after the breast surgery.”
Ohhhhh groan, I felt defeated. I didn’t want radiation. “You are also Her2/neu positive. This is an aggressive form of cancer, however we now have a biologic drug specifically for that kind. It’s called Herceptin and a newer one called Perjeta. The standard of practice is a Herceptin infusion every three weeks for one year along with chemotherapy.”
Ohhhh groan, I don’t want chemotherapy or radiation but they are “the standard of practice.” I was open to a lumpectomy but I wanted to do whatever I could to save my breast and spare my body the horrible effects of radiation and chemotherapy. Should I go to Europe or Mexico? I thought, what is their standard of practice?
My handsome new husband, Harry, had been quiet in his corner of the room. Then he spoke, “From the internet reading I’ve done, I think she may also have Paget disease of the nipple.”
“Well,” said that smiling calm doctor sitting in the other corner chair with his legs crossed. “If that’s the case, it would mean a mastectomy given the location of the tumor in the lower quadrant.” That set my head spinning. He had said the word I REALLY didn’t want to hear. He went on explaining reconstructive surgery, the need for a plastic surgeon to join him and sentinel node biopsies. I couldn’t pay attention – too much! Too Much!
He invited me to the exam table. I was wearing the exam room cape – a version of the hospital gown – same drab material, no arms just a circle of material over my head. When the nurse took it out of the cupboard and opened it, I thought about my circle felt poodle skirt in the eighth grade. I was on my back when he lifted the cape. He took one look and a word jumped out of his mouth and landed with a hard thud on my chest. “Paget!”
Tears rolled from the outside edges of my eyes and collected in my ears. “Oh I’m sorry,” he said with compassion in his voice.
NOW how could I save my breast?
“We will need to do a wedge biopsy to verify that.” Another biopsy?! The first one was so hard on me. I was severely bruised and sore for weeks. I didn’t want any more biopsies I didn’t want radiation or chemotherapy. I just wanted to save my breast. I was a bride, for goodness sake!!
I also knew he knew without a biopsy. The word had formed in his gut – in his own internal intelligence – before it passed his lips. It came out of him with assurance and strength. But the standard of practice was a biopsy to confirm it. Then we would make a decision about the treatment path.
Five days later, I cancelled the appointment for the biopsy. With tears on my cheeks, I pulled the end of the satin pink bow on the box. I was with Sara and Susan G and thousands of other women. My mind still said “No” but my body knew I was in the club. HE, Dr. Gorgeous, would cut off my breast.
But not yet. I had an intense journey ahead of me before I made the next appointment.
To be continued …
Oralee Stiles Hamilton