Today my oncologist smiled, showed me the door and told me I was too healthy to be allowed to stay. Regular check-ups only from now on.
Let me back up a year. In April 2001, an e-friend sent me a "fwd" containing the description of Inflammatory Breast Cancer (IBC). I read it briefly and deleted it. May 15, 2001, I went out to lunch with several ladies at my new job. One of them mentioned she was going for her annual mammogram after lunch, and suggested we should all do a self-exam. Another, a breast cancer survivor, encouraged us not to neglect this.
The next morning in the shower, this conversation came to mind, so I did a quick check. I found a small, tender lump near my right armpit, and a fine, red rash-like mild sunburn, on my right breast extending nearly 5 cm above the nipple. The area around the nipple was slightly thickened. I was terrified. I made an appointment to see my doctor the same day.
She told me it looked like mastitis or a similar infection, and prescribed antibiotics. As a precaution and because I was nearly 43, she also scheduled a mammogram the following week. The mammogram described an area "believed to be benign", and the antibiotics had no effect. My doctor referred me to a surgeon. He told me he had seen inflammatory breast cancer "and this isn't it." He prescribed anti-inflammatories. When they had no effect, he prescribed a stronger antibiotic and took a small skin biopsy, which came back "inconclusive." These antibiotics didn't work either. The surgeon referred me for an ultrasound. It was now early July.
During the ultrasound, it was immediately obvious there was something unusual about the lump. I heard my husband suddenly draw his breath. It had ragged, nasty looking borders even he, a non-medical type, could see was not normal. I was flat on my back and couldn't see anything but his white face. The radiologist performed a needle biopsy and showed my husband and me the samples she removed. They were of a very dense consistency. She sent me back to the surgeon the same afternoon for a more extensive skin biopsy. The results of these two biopsies were the bad news I had suspected—the lump showed infiltrating lobular, and the skin biopsy detected inflammatory breast cancer.
I received the news on the phone the next day while packing for a two-week road trip home to Alberta, Canada. The doctor was apologetic for the misdiagnosis. I was totally numb. He wanted me to cancel the trip and start chemotherapy immediately. We made the decision to go home anyway, but compromised on one week instead of two, as it would take a week to get a treatment schedule set up with the oncology department anyway. I felt desperately the need to be in familiar places with familiar people before taking the leap into battle. I was able to connect with several relatives who were recent survivors of other types of breast cancer, which helped enormously. We returned ready to fight, knowing we had the support of friends and family.
Back in California, chemotherapy (ACF) and tamoxifen was scheduled to begin July 27 after a CAT scan, bone scan, MUGA scan, and blood tests determined there were no measurable cancer sites anywhere else in my body, and I was healthy enough to tolerate treatment. That was important, as IBC metastasizes rapidly through the lymphatic system to skin, bone, brain, and liver. I was told the absence of other cancerous sites made the difference between going for NED (no evidence of disease) or "managing the disease" and "making me comfortable." When the doctor casually mentioned this, it suddenly hit home that I was fighting for my life, not just my breast.
I had my hair cut short, grit my teeth, and walked into the oncology clinic. I don't remember much detail of the next three months. Good friends and a wonderful husband drove me 15 miles one way to appointments and treatments, took notes, and made certain questions were asked and answered while my brain went on a chemical vacation. Luckily, the anti-nausea medication worked, but I felt horrible and weak all the time. My hair started falling out right on schedule, and I went from long auburn to the hairless Chihuahua look. I lost the ability to focus my thoughts or my vision for longer than a few minutes at a time. I developed mouth sores and a fungal infection. And I was one of the lucky ones! I held onto the thought that each individual day was not as bad as the day I delivered my son. I finally had a reason to be grateful for a difficult birth.
I was scheduled for a modified radical mastectomy October 29. That was one of the most terrible things I have ever survived. The surgery itself was not as painful as I had expected. The difficult part was walking into the hospital and lying down on the gurney on my own. The 10- or 15-minute delay between changing into the gown and having an IV started dragged on into more than an hour. My husband was not permitted to stay with me until the IV was in place, so I spent one of the loneliest hours of my life staring at the ceiling, trying to convince myself this mutilation was necessary to save my life. What I really wanted to do was run screaming out the nearest exit.
I went into surgery at 2:00 PM and was released home at 9:30 AM the next day. I have since signed the petition to require 48 hour stays for mastectomy patients. When my son (9) came home from school and was told I was in my bed, he came running in to greet me. I was trying to adjust a blocked chest drain at the time without the benefit of my right arm, and so was unsuccessful in covering my incision in time. I was worried what trauma seeing such a train wreck would cause a sensitive young boy, but didn't know what to say to him. He taught me a very important lesson. He stopped still for a moment, then said "Eeeuw Yuck! Oh well, at least you're still alive!" Then he carefully hugged and kissed me on my uninjured side, and ran off to do his homework.
The pathology reports were wonderful news--clear margins, no detectable cancer in the breast tissue or the 17 lymph nodes removed. It doesn't get much better than that!
After several weeks' recuperation, I started another 4 rounds of Taxotere chemotherapy. I had a bad skin reaction after the first treatment, and was switched to Taxol for the last 3 treatments. Half the stark white hair I had started to re-grow during the surgery phase of treatment fell out, leaving me with a marine recruit look. I bloated like a blimp from the pre-med steroids, and lost feeling in my hands and feet. Fingernails and toenails developed blue stripes as though I had hit them with a hammer. My chest and arm were numb from the surgery, and what wasn't numb had frequent stabbing pain. But it was better than the first round of chemo!
There were funny moments that eased the stress, like the look on the cat's face when she tried to lick my bristly head during a moment of catnip-induced feline dementia, ending up with an unexpected hairball on her tongue.
I was allowed two weeks' recuperation then on to radiation, 30 daily treatments with weekends off. I had all the normal side effects --fatigue, skin irritation, and peeling, but began to see the end of the torture finally approaching. A few days away from finishing treatment, my father-in-law became ill, then passed away suddenly. My husband had flown home to Canada to be with his family, and I drove up a few days later with our four children to attend the funeral--over 3000 miles round trip. Lymphedema set in at high altitudes, but was eventually brought under control. When we returned, I was able to finish the last three treatments and be done with it all.
A few days later, we took a 10-day celebratory cruise to Mexico with some good friends who had watched over us through it all. It was wonderful to relax and be pampered - especially for my husband. He had waited on me hand and foot, worked full time and then some to help compensate for the loss of my salary, as well as watching over the children, shopping and yard work, and running interference when I was too ill to have visitors.
Then today, May 8, 2002, at 4:30 PM, my oncologist smiled.
Through this awful, horrible year I learned so much. Some things I could have done without. Others have been true blessings. I have learned others really care about my family and me. Strangers would see my bald head and tell me they would pray for me, and they meant it. Some would be visibly repulsed by my physical appearance. I learned that was their problem, not mine. Friends and family sent cards, emails, and phoned to let us know they were thinking of us. An anonymous "Santa" brought four huge bags of Christmas presents, obviously chosen with each family member in mind, with a note saying Santa knew Mom wasn't able to shop this year, so he and the elves decided to help out. Food appeared daily at our door for weeks on end, lovingly prepared by friends from many different walks of life. People organized to make certain I had transportation to treatments when my husband had to work. Others, including other survivors and long distance relatives, called regularly just to chat and let me know I was not forgotten.
I learned grey hair isn't so bad, especially if it's curly. I learned fear is often worse than its cause, and I am stronger than I knew. I learned again there is a God, and I am loved.
My daughters (18, 17 and 16) learned they were capable of much more than any of us thought. They cleaned, cooked, did laundry, watched out for their little brother, and kept me company. My husband learned what I do all day, as well as how to pay the bills and where the insurance policies are kept. We both learned we have not spent nearly enough years together yet, that we are still deeply in love, and looks aren't all that important.
I am grateful to my family and friends for their support and care. They are a large part of my reason to fight. I am also very grateful to all those wonderful people who studied hard to become doctors, nurses, lab technicians, radiation therapists, pharmacists, and researchers. Without them, I would not have survived.
Now, I am excited to get back to living. It is spring, the world is a beautiful place, and I am so happy to be here. I know what the odds are with this disease. It may get me yet, but not today.
Roberta Dx 7/01 age 43, ACF x 4, tamoxifen, MRM + 17 lymph nodes 10/29/01 NED(!), 1 Taxotere, 3 Taxol, Rads completed 4/13/02
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