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RECALCULATING

iUniverse, Inc.

Chapter One

At age fifty I found my way back to working outside my home. Being a person who was sorely lacking in any marketable skills, this was not easy. I began with a job in daycare and soon decided that this was not a good fit. Then I tried telemarketing which was just awful. Finally, I worked in customer service at a small educational equipment company for about three years. When the economy changed, I was let go. Although it was a relatively unimportant position, it was still humiliating when it happened.

After joining the ranks of the unemployed I decided to make some positive changes. I wanted to get back to a walking program which I had done before returning to work outside my home six years before. This also seemed like the ideal time to get some medical appointments taken care of as I had a variety of concerns. Juggling my part-time job, a family of five and the responsibilities of a household, things were often set aside for later. It was time to regain better control and make improvements.

A friend from high school was out of work, also. Ginny and I found walking for exercise essential to dealing with our situations, and did our best to get into a routine. Her husband was also a former classmate and friend of ours. My husband John and I always get an enormous kick out of this couple. Due to our circumstances Ginny and I were becoming closer than ever. Both of us were feeling unsettled and it helped to have someone else who really understood to talk with. Unlike myself, my friend is highly qualified in her field. We were both faced with the dilemma of finding a new job at our ages in this bleak economy.

My sister Vicki and I also began meeting to walk regularly. This was particularly good for our relationship. It allowed us to spend more time together and rediscover the closeness that we had previously enjoyed. As I had been lost in Mommydom, while she was equally submerged in running her own successful real estate business, it was sometimes difficult for us to stay connected.

Some mornings Ginny, Vicki and I walked together. Vicki's daughter Jennifer is a strikingly fit, thirty-something woman living on her own in Manhattan; occasionally she would stay over in New Jersey and join us. It was pleasant time spent doing something we were sure was good for us all, and the mental health boost of their friendship was welcomed.

Women need to talk about their experiences. They have to vent and laugh whenever possible with someone who "gets-it." Men, and this is not judgmental, need sex, or some form of competition or hobby to help keep them going. None of these actions provide all the answers to life's challenges. They do, in my opinion, often make things a little easier and more tolerable.

By now it was May of 2009. I was fifty-six and due for my routine annual mammography. As always, there was some anxiety involved.

My family has a very strong history of breast cancer. My mom's sister was diagnosed more than forty years ago and had a mastectomy; today she is in her eighties. My dad was diagnosed with breast cancer at age fifty-six and had a mastectomy. This was the first time I realized that this disease also affected men. Sadly, he passed away at fifty-eight in 1983. Several years later, my sister Vicki was diagnosed at thirty-eight with the same disease and also had a mastectomy.

From the beginning Vicki became proactive and rededicated herself to "living." She learned to eliminate certain stresses, and became a more positive person. My sister identified the things that brought her the most purpose and enjoyment in her life and concentrated on them. From the time Vicki was first diagnosed I started to go for annual screenings.

This year I was aware of more breast pain than usual, so I was perhaps a bit more concerned about my test. My highly cystic breasts always presented difficulty in proper imaging. Routinely there would be two to four sets of images taken before I would be allowed to leave the breast center.

During the screening the technician explained that the new digital camera required a particularly compressed position to obtain maximum results. It shocked me to see my breasts reduced to flat pancakes and as became very uncomfortable, I complained. The mammography was performed on May 15, 2009. From that time on, I attributed the stronger pain in my breasts, especially on my left side, and pain in my ribs to that test. This discomfort stayed with me for months.

The breast center notified me that a breast MRI was appropriate. They stated the request was based on family history. It had been a number of years since I had taken this test. With the amount of pain I was experiencing this was easily agreed to.

June came and I had the MRI. I was nervous. My doctor notified me that an area on my right breast needed more imaging, an ultrasound and a possible needle biopsy. This was not surprising. I still thought that something was up with my left breast as there was substantially more discomfort on that side.

I went to this appointment by myself as usual. I never thought it necessary to have company for any of these tests and these places are always overcrowded anyway. I went from additional mammography to having an ultrasound.

The doctor had taken time and great care in locating and examining the area. I sensed her discovery and some concern, which I felt she was silently showing her assistant. I asked, "Do you have a conclusion you can share with me?" She stopped, looked deep into my eyes and replied, "Are you the kind of person who really wants to hear that answer? Or are you the kind who needs to have the official report after the pathology comes back?" I said, "I want to hear it right now, from you."

The doctor carefully explained her conclusion as she retraced what she was looking at on the monitor. She was certain that this was a small cancerous tumor. Her honesty and clinical manner was appreciated. Next, she performed one core biopsy and two fine-needle biopsies.

I moved and got nicked accidentally with the needle used to do the biopsy and I began to bleed. At this point I started to cry; not the sobbing kind, just the quiet, streaming variety. The nurses and doctor were supportive and caring. I quickly composed myself. One more imaging was required to make sure the clip left during the core biopsy was in its correct place for the future procedure required.

I left thinking, Finally the thing I was prepared to hear for years has happened.

Three days later when my general practitioner called to say he received the report, it was still shocking as he explained, "Amy, it is bad news. You will have to see a breast surgeon as soon as possible." He never said "cancer." My doctor simply sounded emphatic and alarmed.

I got off the phone and found my husband. Though John and I had discussed what happened at my appointment days earlier, this call came as a second blow. After quickly hugging one another, we thought of our three children who were all home. Instinctively we had to collect ourselves.

John and I saw no need to share the news yet. We all had planned to see the fireworks display on July 3, in the next town. Sitting through the noisy celebration, I can remember feeling like I wasn't really there.

I do recall John saying before we went to sleep, "Look, if they suggest a mastectomy, you might want to consider having both breasts done." I took that as a sign that he could handle his end of this situation.

So, this is where my breast cancer journey really begins.

Starting My Journey

My husband and I hosted a Fourth of July family BBQ, where we successfully avoided telling our family about my situation. That felt right because we hadn't gotten any medical advice and we were uncertain what course would be taken. We pulled off the summer celebration with no one suspecting that anything was wrong.

However, I did end up confiding in John's sister Mary after everyone else went home. We have been quite close and shared many issues over the years. I knew she could be counted on to help my family out, if needed.

Telling my mother and sister would be more difficult; I knew how worried they would become. My walking pal Ginny knew about my screening and tests from the get-go. This made it easier to tell her about the breast cancer diagnosis. I told her right away, of course, she was totally supportive. One thing I discovered each time I told someone: it made it easier to tell the next one. I waited to share my crisis with a couple of other friends until after I shared the "news" with my family.

Sunday, John and I sat our children down, and let them know what was going on. It was summer time. I knew they would be around overhearing all kinds of phone conversations between me and doctors' offices and our insurance company. Anne was twenty-four; Keith was twenty and Cara was almost fifteen years old. They were not babies. It seemed wise to be open and honest from the beginning. They were concerned, but they also seemed confident that we would do whatever was needed to be done.

Later that evening I told my sister, who was a twenty-three year breast cancer survivor; she was surprisingly calm, and assured me she would help me. Vicki can be a tower of strength, but she must be in control. She is the biggest advocate of the power of positive thinking outside of Oprah. I am sure she was distraught, but I did not detect that at all. We agreed my mother and my step-dad, Irwin, should be told later on when I had more information.

Mom married Irwin about six years after my dad passed away. Irwin's son (from another marriage) and his family live in Colorado. Mom and Irwin were expecting his son Alan and two of their grandsons for a special visit. Irwin, my husband John and our son Keith joined the three of them to see a baseball game at the new Yankee Stadium. We saw no reason to put a blemish on this time by telling about my diagnosis, yet. That was definitely the right move as everyone had a great weekend.

In the meantime, I tried to find a surgeon. This brought me to a specialist in a nearby hospital. I scheduled an appointment with the doctor after she returned from her vacation two weeks later.

July 20, 2009, was my first consultation with a breast surgeon. My sister Vicki and John went with me. I was fully prepared with films, a CD, reports, and my plastic file folder chock-full of all my medical information gathered from the past year. I had created my own records of my other medical concerns, symptoms and history. It may seem unnecessary; however, this system has come in handy on a number of appointments.

The doctor was a foreign-born woman who exuded strength and firmness. She evaluated my records and family history. Quickly, she expressed her recommendation for a mastectomy. The explanation included: her hand-drawn diagrams of the breast, key information, and success rates of the various options. The doctor said, "Your tumor is an early-stage, slow-growing and garden-variety breast cancer."

It was hearing her say I had breast cancer while looking into my eyes, as she explained the situation and options, which made it finally sink in. Before this, I thought, "I got it." Nope. There must have been some doubt or denial in my mind. How crazy! This doctor cleared that right up. Unconsciously, I hoped a misunderstanding or an error had occurred. Honestly, I did not even realize I felt that way.

The doctor insisted on me taking the hereditary gene test for breast and ovarian cancer right there and then. It is called the BRCA test. She felt certain the results would make my decision clearer. Those results would take about two weeks to get back. Sending me for a chest x-ray also, I knew she was thinking about surgery—soon. The tests were done there that same day.

I told this doctor I had an appointment for a second opinion. She appeared momentarily "put-off," but asked me to let her know of my decision. I am very grateful for her directness, her insistence that I needed the gene test results, and her assurance that we were dealing with this at an early and manageable time.

My second appointment three days later was with my sister's surgeon. This appointment was at a prominent and well-respected hospital. It made sense to me to get a second opinion where they have the best, updated equipment and the most experienced specialists.

My sister had asked her breast doctor's office for a suitable referral for me, thinking my insurance company was not in-network with their hospital. The doctor's nurse told her that they were just becoming affiliated with my insurance company. Vicki called me in tears. She was so happy that I could go to this hospital without additional issues. It struck both of us that this was a divine intervention.

Vicki has long credited her breast cancer survival to this hospital and her original doctor, who was killed in an accident about six years ago. She was a brilliant surgeon and researcher considered to be tops in her field; her loss is still acknowledged throughout the hospital.

John and Vicki accompanied me again on this second consultation. The second doctor was a young, soft-spoken woman. She avoided telling me what to do and preferred to go over the facts and details of my situation. The statistics were an important part of the consultation as well. It seemed confusing as it all boiled down to the fact: Survival is equal—with a mastectomy or a lumpectomy.

The lumpectomy offered breast conservation. It was to be followed by seven weeks of radiation therapy and routine six-month checkups. This plan included mammography and MRI tests alternating for years to come. The breast surgeon said, "In your particular case with this tumor, the decision is one only you can make." She added, "If the situation was different I might feel more inclined to guide you more in a particular direction." There was so much to think over. We also wanted to have the results from the BRCA test, as the statistics were greatly affected by the hereditary gene.

About a week later, the first surgeon called me with the results from the test. I was positive for the BRCA 2 gene. We spoke about the second consult. This doctor made it clear that the test results had taken away the lumpectomy option. I appreciated her advice, but I preferred to go with the New York hospital. Our conversation was brief, and she wished me well.

The decision had to be right for me. Of course, my decision would also be important to those I love as well.

At first, I thought the lumpectomy made good sense. It would be less drastic and definitely easier on my body with less recovery. There would be one operation vs. the more substantial mastectomy surgery and reconstruction, which requires two operations in my case. After a few days passed, I realized my heart was telling me to think more about the mastectomy. Reducing the chances of reoccurrences was a big deal to me.

Realizing that the risks of recurrences were higher with lumpectomy just did not sit well with me. I recalled years before when I was going for a mammography and breast MRIs at six-month intervals to watch an area of concern. That constant testing made me anxious and uncomfortable. It felt as though I was on "cancer alert" which drove me a little crazy. After obtaining a second opinion I switched my routine diagnostics to a different facility where it was a little less intense.

Recalling the earlier experiences, I had to ask myself if I could handle the constant testing, and the watch-and-find course that lumpectomy offered. Surely some people would find this preferable to mastectomy. Would it be best for me? Would it be best for my family? Either way there was "no one hundred percent guarantee" that this breast cancer would not return. Finally, my decision became clear. I called the surgeon's office and told them I had decided on a double mastectomy. They told me to come in for another consultation.

Again, we all went to the doctor's office where I explained how I came to the decision. The general consensus was that the pain in my left breast was not of concern at this time—I was still somewhat unconvinced. My preference was to do both breasts at one time. It eliminated the worry of cancer returning in the other breast someday. My body would be the same on both sides, which made better sense to me.

The surgeon appeared to be fine with my decision. She explained, "Patients, in my experience, are most comfortable coming to their own decisions, as opposed to being talked into something." Lastly, we talked about scheduling an operation.

The doctor felt strongly that I needed to see a gynecological surgeon to talk about an oophorectomy, the removal of the ovaries and tubes. This would eliminate the estrogen produced by the ovaries, might increase chances of breast cancer returning. The BRCA 2 gene puts me at greater risk to develop ovarian cancer, too. As there is currently no good diagnostics for detecting early-stage ovarian cancer, this needed to be considered as well. Wow! This was more than I expected to have to think about. In addition, we needed to see a plastic surgeon about reconstruction. Jeepers, what the heck? Appointments to see these other doctors for consultations were set up immediately.

(Continues...)

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Excerpted from RECALCULATING by Amy Dempsey Copyright © 2012 by Amy Dempsey. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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