My dead mother, her youngest sister and an oncologist who was not my caregiver made the hardest decision of my life for me. It wasn’t as if they were communicating by an Ouija board, they communicated in more realistic but equally frightening ways. My mother could offer no words. Her sister contributed hindsight. And the doctor spoke at length with a passion I have since come to share.
In the spring of 2000, my youngest aunt was on Tamoxifen which had been touted as a Wonder Drug for women previously diagnosed with breast cancer. A bold, pink “T” on its chest and super hero cape flapping in the wind, Tamoxifen was fighting the good fight, eliminating breast cancer in a single bound, making humanity safe for women again! Only, it wasn’t. Lois had taken her rather large, white tablet faithfully every day. She had a lump. Again. The lump was malignant. Again.
Unmarried and childless, Lois needed moral support. I went to Albuquerque to buoy Lois’ spirits.
“She can’t buy a break,” said her sister, Nancy, over the crunching gravel as we pulled out of Lois’ driveway, our arms waving goodbye out both side windows, “first she breaks her shoulder in a freak fall, now this!” We both cringed as the car’s undercarriage ground away a few more flakes of cement edging the sidewalk. “I hate this driveway.”
The silence after all the grinding and churning was deafening. “She’ll do all right. She did well with it last time, she’ll be okay,” I replied, more to fill the void than to convince either one of us. Chemotherapy, radiation and surgery. Again. A trifecta no one wants to partake in.
Their mother had breast cancer twice. My mother, the oldest sister, had breast cancer twice, too. She died from it; it got into her lungs and stayed there. The day of my aunt’s biopsy I swore that if it came back positive “I was taking these bad boys off!” It was a few months after her malignancy was announced before I started the process of gathering information. I didn’t want to be accused of being too reactive. Didn’t want to be seen as hysterical. I wanted to be thorough. I wanted objective advice. During those months, I pondered my options. I had two small boys to raise and a less than helpful husband.
“Breasts. Breasts.” I rolled the word around in my mouth, it isn’t easy to say. It’s the tsa-tsa sound at the end which is most noticeable. If said more than fifty times, it begins to sound as if it isn’t actually a real word at all. Even when speaking of a single breast the final consonant sounds harsh and more abrasive than what it is in real life. In real life it is a mound of tissue. Flesh, fat, nipple, milk ducts, skin. Skin which draws taut when touched or in cold weather. Nipples that deliver milk in an astonishing number of directions when a full breast is squeezed. Flesh that is warm to the touch and soft to lay your head against, muffling the heartbeat beneath.
Objectivity was needed here. Clinical truth. I spoke to my mom’s oncologist, Dr. Robin Kovachy. I explained that I was looking for information and advice. The doctor efficiently ticked off her questions. Age at first period? At first live birth? Did I use alcohol? How many relatives with breast cancer? Had I used oral contraceptives? For how long? She explained while quizzing me that these numbers are used for the Gail model of risk assessment. It would determine the level of risk I had of being diagnosed with breast cancer. Based on my family history and the answers to her questions she calculated my chances at greater than 35%.
“What are my options?” I asked with more courage than I felt. Up to that point it had been theory; now it was reality. The doctor plunged into a monologue to which I listened with rapt attention.
“Well, there are three choices. You could remove them with prophylactic bilateral mastectomies as a preventative measure. You could take Tamoxifen which they say prevents breast cancer, I think it just slows it down. You would then monitor yourself closely. There is a current study on MRIs and breast cancer. MRIs measure changes in chemicals, unlike mammograms which measure density. MRI is more sensitive, but also more expensive. Don’t know how long that use will be supported, but then when you get the diagnosis, you have them removed and do the protocol of chemo and possibly radiation.”
“Okay” I mumbled, scribbling quickly on the pink ‘while you were out’ slip I had grabbed from the doc’s desk. I did not want to miss any of the options she listed.
“If you don’t really want to do that then you could have the gene test done and if it comes back positive you could have them removed.” I sensed a theme. She fell silent and waited for me to say something.
“What would you do?” I asked, genuinely interested.
“If it were my daughter,” Dr. Kovachy said looking at me earnestly, “I would tell her to have them taken off. As is, you have greater than 35% chance of getting breast cancer. If you have them removed your chances go to less than 2%.”
Less than two? Yes.
Hmmmm. If I was in Las Vegas, which table would I play at? The one where I win 65% of the time? Or the one where I win 98% of the time??? Not a hard decision for me. My children no longer needed the functional aspects of my breasts, but they needed me.
“I had already come to the conclusion that I was going to have them removed, but I wanted to hear someone else say it.” I asked the physician if she would write a letter to the insurance company. After discussing body image and the importance or non-importance of breasts in a healthy body image, she agreed. Her broad smile and warm embrace displayed her heart-felt satisfaction with my thoroughness and decision.
My husband, however, was not as supportive. After all, my breasts were his buddies. He loved them. I think he loved them more than he loved me. His primary concern was for the sexuality of it all. He accused me of being paranoid and asked if I was going to have a hysterectomy too, just in case. “Where does it end?” he asked.
“Here,” I thought “it all ends here.”
Within 24 hours of receiving Dr. Kovachy’s letter United HealthCare approved the surgery. When I relayed the good news to my husband, his response was an unconvincing “Congratulations, I guess.” I don’t know what I expected him to say, but that wasn’t it.
Our marriage had been rocky for years, but I had focused on my mom’s failing health for several years. When she died I was then able to turn to him and say “I don’t know whether you’ve noticed or not, but we have a problem.” His response to the upcoming mastectomies brought the problems into sharper focus. It was then that I knew I was in this alone. Alone because I was getting divorced. Alone because the person who loved me best had died of breast cancer. Alone because that is how you go into surgery. Alone.
Even while my mother was alive I accumulated other mothers. They were the mothers of my friends or teachers at school. Some gave me permission to call them by first name, others I simply called “mom.” They counseled me and scolded me like their own daughter and were never surprised to see me at the table for breakfast, lunch or dinner. Edna was Marsha’s mom by birth, but mine by choice. They lived across the street from us and I ate as many meals at Edna’s table in a week as I did at my own. In high school her family moved to Phoenix and though Marsha and I had gone our separate ways I continued to call Edna every October 22ndto sing Happy Birthday. It was that singing call in 2000 when Edna helped resurrect my friendship with my childhood pal. Marsha and I established email contact in early 2001. It had been 20 years since we’d last spent much time together, but the sisterly love was still there. In early summer I mentioned to Marsha that I was going to have surgery. Without a moment’s hesitation she said “We can come take care of you Kare. Mom’s a nurse and a great cook! I’m a good cook too and a great conversationalist. Tell me when it is and we’ll be there!”
No more silence.
“That would be terrific! It will be at Rose Hospital which is near…never mind, you wouldn’t remember. I’ll make all the arrangements needed on this end. There’s a guest room for your mom and you can sleep in my room with me…unless, well, let’s see how it goes…” I gushed.
“No worries, Kare. I can sleep on the couch. I’m just glad we can help. Mom will be so excited. She loves you so much!” Marsha glowed over the phone.
“I’ll get all the information together, surgery date and time. My aunts, Nancy and Lois will have the boys in Albuquerque. Let me get to work on this.” Overcome with gratitude I hung up the phone and cried. I had true, lifelong friends who, despite a 20-year hiatus were coming to my rescue. I had a husband of 10 years who would no more take care of me than a stranger off the street.
Operation Boob Voyage was underway. Surgery was scheduled for early August. Itineraries were synchronized. Nancy would come up a few days ahead of time to help calm my nerves and to be with the boys while I had surgery. She would let Edna and Marsha into the house as she and the boys would leave for Albuquerque by way of the recovery room. The boys would need to see that I was okay before heading out for their ten-day vacation. All that remained was to relocate my future ex-husband.
“I have friends coming in from out-of-state to take care of me after my surgery. You need to take what you want and move out.” I don’t think he believed me since he didn’t start packing. As the end of July grew closer I began to pack for him. The bed on the lawn and boxes of his stuff neatly stacked on the porch gave much needed momentum to his departure. He moved out a few days late, but move out he did. He had to move. I had housecleaning to do. I was having a party. The invitation read:
What: Boob Voyage Party
Where: my house
When: August 4th 7pm, Denver Time
If you can’t join us because
you’re wandering the
shores of lake Titicaca,
strolling the sidewalks of Brest, Hungary
or are in some valley in between…
raise your jugs of
margari-Ta-Tas to bid adieu
to my frontal lobes.
We’ll have racks of ribs, chicken breasts,
jello jigglers, melons and much, much more!
rsvp to karen
My girlfriends and I had a blast that night. We nibbled on melons and breast meat, drank slippery nipple shots and gave my breasts a well-deserved send off. The few days of recovery time between party and surgery were much needed. My attitude about the surgery tickled my surgeon and her staff. She demanded a copy of the invitation to put in my medical file.
I wove in and out of the anesthesia in the recovery room. My chest was sore as if I had overdone my upper body workout at the gym. Michele, my friend and priest, was ever-present. I worked my eyebrows as if they could help bring her into focus. I tried to keep my eyes open. I’d never had eyelids of steel before, I couldn’t keep them up. The nurse came in and showed me how to administer the pain meds with the clicker in my left hand. I could learn that with my eyes closed. I liked that button. It made Michele nervous, she was sure I’d become an addict.
“Michele, come here.” I slurred. My mouth was dry, my tongue a half size too big. I felt drunk.
“Hey, Sugar,” she cooed.
“I lost three,” I announced very clearly from my side of the haze. Click. I pushed the button to get rid of a twinge I was feeling.
“What, Sweetie?” She had trouble understanding me and bent her head closer.
“No, Honey, they only took off two. That’s all.” Her annoyance growing with my rapid-fire clicking. Like a contestant on Jeopardy I didn’t want to miss a chance to ring in.
“I lost three boobs in one week. Left, Right and my husband.” I chortled. She got it. She groaned.
“Go back to sleep. I’ll still be here when you wake up.”
Informed decision making. Self-mutilation. Preventive maintenance. Paranoia. Self-love. It doesn’t matter what others call it. I call it the right decision for me. Peace of mind, lowered risk of breast cancer and seeing my sons grow into young men is a trifecta many would like to win.
Karen L. Jefferson is the Executive Director of MRERF, a charitable education foundation for sales professionals. She is also a board member of WINGS Foundation which provides support groups for adult survivors of childhood sexual abuse.