Chapter Nine - Original Breast Cancer

CHAPTER NINE ORIGINAL BREAST CANCER -- FEB 2000
In the fall of 1997 calcifications (the presence of healing in the breast tissue) were found on a yearly mammogram. Apparently calcifications are not necessarily a sign of cancer so the Dr. wasn't concerned enough to get a biopsy, but she wanted to keep a closer watch on the tissue so I began having regular mammograms every six months. In July 1999, I complained to my Gynecologist about a lump in the same area where they were seeing the calcifications. After a physical exam, she assured me that it was "definitely not" a lump. As a matter of fact she said it three times, so I was somewhat relieved. I say "somewhat relieved" because I had this nagging feeling that something was wrong. I was so nervous about the lump I "definitely" didn't have that I started doing breast exams every day. In the shower I would use my finger tips and feel around the breast in a circular motion going slowly over the portion that I thought was a lump. I could certainly feel something.
The following February 2000 I went in for my next mammogram. My nipple was caving in. The Technician asked me if there had been any changes since my last test. I told her that my nipple was deformed but my doctor assured me that I didn't have a lump. She took more films than usual that day and went in and out of the room several times. This made me suspicious. When we finished up, she told me that my doctor would call me with the results.
At 7:30 the next morning I got a call from the doctor's office explaining that they got the results of my mammogram. She said, "We urge you to seek a surgeon immediately." I was stunned. I started firing off questions, a pretty logical thing to do after getting that kind of news, but the woman I was talking to wasn't the doctor so she didn't have any answers for me. I requested a call from the doctor which came six hours later. The bedside manner of this physician was curt. She had no empathy or sympathy in her voice; she was just matter of fact.

As I rattled off my questions, her answers to me were; "I do not know, that is why I'm referring you to a surgeon." Perhaps she was completely in the right by her response to my questions, but she was just so cold about everything that I was left feeling dazed. I felt she could have done a better job in dealing with my fears. That was the last time I would ever use a drive through physician--one of those doctors who are in such a hurry they can't be bothered to answer your questions. They leave you sitting in the exam room for an hour, breeze in without an apology for wasting your time and act imposed upon when you need additional information.
I sought out the surgeon my doctor referred me to, he looked at the films and said he wasn't sure what it was, but it should be biopsied. Unfortunately he was so successful and busy that he couldn't do the biopsy for a month. I knew I couldn't wait a month, so I went to the Cleveland Clinic Breast Center.
The Clinic scheduled me for an appointment the next day. When the surgeon looked at the films he said, "I'll be shocked if you don't have cancer." They did the biopsy a few hours later. The Radiologist performed the biopsy and concurred with the surgeon. The mass probably was cancer. When I received the official news that it was, in fact, cancer I cried and I was frightened. To my advantage, when my mother was 46 she developed stage four breast cancer, survived and never got it back again. She is now 77 years old. Because my mother seemed to sail through stage four breast cancer and chemo, I suspect I was less nervous than someone else in the same position might have been.
The diagnosis came in February 2000. I definitely had cancer, they were not sure of the stage, they would know more after the surgery, which would be a mastectomy. Within a few weeks I met with an oncology surgeon and a plastic surgeon. They were absolutely wonderful. All the doctors at this clinic were. They were kind and caring and generous with their time. They spent so much time in fact, I thought to myself, "Why are they staying in the exam room so long? I must be dying." But I was wrong. They were just good medical professionals, who wanted to make sure that I was clear about my disease. I didn't feel rushed or pressured or like a number who wasn't significant.
Two weeks later I had a mastectomy on the left side as well as reconstruction surgery, a mastectomy is an operation where they remove the breast and lymph nodes containing cancer. Reconstruction is rebuilding the breast. Some people do theses surgeries separately. I decided to have everything done in one surgery so I didn't have to go back into the hospital for a second operation. It was a long surgery using two surgeons, one to remove the breast and lymph nodes and a plastic surgeon to make the new breast.
The reconstructive procedure I had is called a tram. The surgeons use the fat from the abdomen as well as a portion of the rectus abdominus muscle, which is one of the main abdomen muscles running from the sternum to the pelvis. To reconstruct the new breast, the fat is molded into a breast and a portion of your ab is cut and used to hold the fat in place. Unfortunately, because I had been religious about fitness, I was in good shape and thin when I had the surgery so there wasn't enough fat in the abdomen to make the breast.
The surgeon made me aware of the possibility that an implant might have to be used if there wasn't enough fat. I opted for a saline implant, if that were the case, one that would be the same size as my original breast. When they put an implant in on one side insurance pays for one on the other side. This is so you don't have one perky breast and one that's not so perky. So, now I had two breasts standing at attention. The mastectomy side looked good, or at least that is what every doctor said when they looked at it. And, they looked at it every day. I, however, called it my Frankenstein boob. The new breast had a good shape but it had several stitches across the front and I couldn't feel a thing when it was touched. Reconstructed breasts have no feeling left. After I healed from the surgery the doctor made a nipple and tattooed it brown so it looked more realistic.
The surgery revealed that my cancer was at a stage 2b. This is almost a stage three and there are just 5 stages of severity with disease. I had three positive lymph nodes. Recovery time from a tram and mastectomy is typically about six weeks, but my healing time was shortened because I was in good physical condition. This is one of the many reason I love exercise. It not only makes you feel and look better, it helps your internal systems work better. Why do so many people object to doing it?
Chemotherapy started the following summer. This would be my first experience with chemo so I was frightened. I was unsure of how I would handle the drug. I was given so much information about the possible negative side effects that my mind traveled to the worst case scenarios. A prospective chemo patient is informed of every possible side effect the drug can offer. This is so you know what to expect, just in case you may have one of them. Chemo side effects range from hair loss, mouth sores, nausea, vomiting, neuropathy and more. It's like those drug commercials you see on television. They tout a drug for its healing powers, but they don't want to get sued so they have to tell you about known negative side effects. This drug can help you but you may have anal leakage or impotency as a side effect.
Initially, exercise was not part of my chemo regimen because I didn't think I would have the energy, both mentally and physically, to do it. Eventually, I persuaded myself to do some walking. At the time, because it was my first experience with this type of therapy, I wasn't sure how my body would handle physical activity. I just wanted to take it easy.
My initial chemo wasn't awful. I started losing my hair about three weeks after the first dose. I decided to take the financial plunge and have a real hair wig made to the tune of $1,000. I was appalled at the cost, but vain enough to spend the money. My youngest daughter Frankie, who was 5 at the time, accompanied me to the wig salon. The stylist turned my chair away from the mirror so I was staring directly at Frankie and proceeded to shave my head. Frankie giggled and gasped and made funny faces at me the entire time until I was completely bald. She stopped and became quiet until she blurted out, "You look just like Grandpa O'Brien with a burst of laughter." I turned around and had to agree, I did look like Dad, just a younger and better looking version.
My other side effects were mouth sores, dry mouth, general body weakness and nausea for the first few days. Food tasted terrible to me. Drinking soda water and eating saltines helped immensely. I didn't feel like eating, but the less I ate the worse my nausea got. Crackers and sparkling water did the trick of curbing the stomach issues.
Five, eight and ten were the ages of my daughters during my first experience with cancer. They were scared, and used their voice of tears to express their fears about my new look. I explained to them that it was just the medicine that made me sick, not the cancer. Comfort settled in while listening to stories about their Grandmother O'Brien's successful battle with cancer, so I told it to them often.
My Mom and Dad came out to help out with the kids after my surgery which was reassuring to all of us. Mom had been through chemo and a mastectomy, this coupled with the fact that she is a retired nurse brought calm to the household. I was taking pain pills to cope with the discomfort from the surgery which made me constipated. My Mother, bless her heart, offered to dig out the poop for me. My answer was "I love you Mom and obviously you love me if you are willing to go that far, but not in a million years would I have you perform that task." We then roared with laughter.
Mike was by my side for every Dr. and chemo appointment. His fear manifested itself by staying busy with not only his work, but the many tasks I was too tired to do around the house. Cooking was not his forte, so our friends, family and neighbors were kind enough to prepare meals on chemo days. Illness brings out the best in your supporters.

By Thanksgiving 2000 I was finished with chemo. Leaving this part of my life behind was absolute ecstasy. My hair was growing back. And most importantly, my taste buds started working again, food isn't worth eating if you can't taste it. The doctor gave me a clean bill of health. Life quickly streamed into a regular routine except for the fact that over the next year I would have to visit the clinic every four months to get a physical and lab work to see if I remained cancer free. Every time I walked back into the clinic I was reminded of the cancer ordeal, but as soon as I left those thoughts were gone.
Each visit to the doctor was positive, and I remained cancer free for a few years. After the first year, my original oncologist whom I loved, moved to another state so I was assigned to a new one. The new oncologist was a nice guy, and we had a decent rapport. I was now down to visiting the clinic every six months since it was the second year after my original surgery. Then, in the fall of 2002 I started to lose weight and feel a little tired. I made a special appointment. I wanted to make sure everything was okay.
My oncologist performed the usual physical exam, checking the breast and the rest of the body for lumps. Many questions were asked about what I was eating, my activity level, and my stress level. At the time I was taking college courses to complete my degree, coaching volleyball, running a household and eating about 2000 calories a day. He attributed my weight loss and lack of energy to a busy lifestyle, which left me reasonably content, though once again I had a nagging sense in the back of my head that there was more to it.
Six months later, May of 2003, I saw my oncologist again I still had the same symptoms. I was tired and thinner than normal. We discussed my concerns. At this time my school work included a stressful internship, stressful because it wasn't a good fit between me and the employer. I sensed that there was cancer somewhere in my body which I conveyed to him, but he discounted my concerns because I didn't have any obvious pains or symptoms and I was under more stress than usual. A physical exam was performed and everything was fine. There was not a blood test taken because too many patients were complaining about overkill in that area. Patients were getting blood draws at their regular physicians as well as their oncologists so the clinic pulled back on that procedure. My oncologist, however, was my one shop stop, so I wanted a blood draw at my future visits. I left feeling a frustrated and wished that I felt better. Three to four weeks later I was diagnosed with stage four breast cancer which had metastasized to the liver. You might be asking yourself how this could happen to a person twice--being misdiagnosed by two different doctors. While I believe that the doctors may have dropped the ball, so to speak, I also feel I shoulder some of the blame. I should have trusted my instincts.
Advice
Speak up to your physician if you feel there is something wrong.
Trust your instincts.
Get to know your body.
Don't be intimidated by your Doctor, they make mistakes too.
Be proactive in your own care.
Don't be afraid to push for a test if you feel there is something wrong. And don't be afraid to stand up to someone when your health is on the line.
Get a second opinion if need be.