When rare cancer came her way, she seized life, signed on

When rare cancer came her way, she seized life, signed on

-By Ginny Mason, West Lafayette, USA

After months of pain, itching and swelling in my right breast, I was finally going to get an answer.

The surgeon entered the room looking quite serious, sat down across from me and took my hand. "Not a good sign," I thought to myself.  He said, "You have inflammatory breast cancer. ... On a scale of 1 to 10, this is not the one you want."  I looked at him and, in my typical optimistic way, said, "I didn't know I wanted any!"

His expression didn't change, and that's when I knew this diagnosis wasn't good. I was 41 years old and had no family history of breast cancer, so how could this be?

The surgeon explained I needed to start chemotherapy immediately. Then he led me down a back stairway into the cancer center. Two oncologists looked up when they heard us, and one said, "Is this the woman we talked about last night?"

Again, that feeling of "this doesn't sound good."

I was taken to an exam room where my vitals were checked, then was told about the proposed treatment. As the oncologist finished telling me about the various chemotherapy drugs and the anticipated side effects, he said, "You'll need to call someone to drive you home because one of the drugs will make you drowsy and not safe to drive."

I looked at him in amazement and replied, "I can't call my husband and tell him to come get me because I've just had chemo. He doesn't even know I have cancer!"

I assured the oncologist I would start chemotherapy on Monday but needed the weekend to tell my family about the diagnosis and make some plans.

I don't remember thinking, "Why me?" Instead, it was "Why not me?"

Driving back to work I saw a banner that proclaimed "1 in 10 women will be diagnosed with breast cancer." Great! I'd saved nine of my friends.

When I got back to the outpatient mental health clinic where I worked, I tried to go on as if nothing had happened, although my thoughts were churning. Mentally I sped through all five stages of death and dying made famous by Dr. Elisabeth Kubler-Ross, finally arriving at acceptance.

Before leaving for the day, I checked with my supervisor, a psychiatrist, about taking Monday afternoon off. He was quick to agree and kindly asked if everything was OK, so I shared that I had a medical appointment. He nodded and said, "Nothing serious I hope?"  When I explained I was starting chemotherapy for aggressive breast cancer, tears filled his eyes. It was the first time I'd come close to tears myself, and I said, "Don't do that. I'm barely holding it together."

While driving home from work through a downpour, I rehearsed how to gently break the news to my husband. The oncologist had said that even with aggressive treatment I would probably live only 12 to 18 months.

How could I tell my husband of 24 years this news?

When I arrived home and walked in the door, my carefully planned speech dissolved and I blurted out something like, "I've got this awful kind of breast cancer, and I'm going to die!" Poor guy, he was stunned. We fell into each other's arms.

As we cried, the storm outside gradually subsided. Spent from our tears, we looked up and through the window saw an amazing rainbow. At that moment, we knew that whatever the outcome, it would be all right.

It's what we didn't know that makes me shake my head now.

After an emotional weekend sharing the diagnosis with family, friends and our congregation, I returned to work. I'd gotten my waist-length hair cut the night before in preparation for chemotherapy. Co-workers were shocked to see my short hair, and that opened the door for me to say, "Don't get used to it, I'm going to lose it all with chemotherapy." I wanted to be open about my diagnosis because I had to have the help of my colleagues to manage my workload, and I also needed their emotional support.

People needed to understand that my immune system was weakened by chemotherapy and I had to be careful about infections. They got used to seeing me wear a mask in addition to my array of hats and scarves.

For the next five months my life was a series of doctor appointments, chemotherapy, medical tests and lots of fatigue. I managed to keep working, thanks to an understanding employer. Many meals, lots of prayer and other caring acts helped get us through the day-to-day challenge of living with cancer.

After months of intensive chemotherapy, I underwent a modified radical mastectomy -- the removal of the breast and lymph nodes -- followed by six weeks of daily radiation.

Finally, it was over. It would be three months before I saw the oncologist again. My hair was starting to grow back, and everyone thought I should be excited to be finished. Don't get me wrong, I was excited, but it also was frightening to end active treatment. For the first time in many months, I wasn't under medical surveillance.

What if any remaining cancer cells flared up? What if I didn't notice something important?

I began to worry about every little ache and pain. Having cancer changes people, and that can be difficult for family and friends to handle. For some, a cancer diagnosis is immobilizing. But in my case, I was motivated to seize life.

I had always been a quiet person, not wanting to be in the spotlight or speak in public. But the diagnosis changed something. I began speaking out to raise breast cancer awareness, started a breast cancer support group and went back to school, ultimately earning a bachelor of science degree in nursing in 1999.

While in Alaska to celebrate my graduation and five-year survival, my husband and I arranged to meet a man who had lost his wife to inflammatory breast cancer and had just filed the paperwork to incorporate the Inflammatory Breast Cancer Research Foundation as a nonprofit. As we talked over lunch, it was clear we shared the same vision and passion.

Twelve years ago, I signed on as a volunteer for the foundation. In 2003, I gave up my day job to devote my full-time energies to the grass-roots organization, working from home as executive director.

Just about everywhere I go now I hand out information about inflammatory breast cancer, reminding people that you don't need a lump to have breast cancer and that any breast change that doesn't resolve itself in two weeks should be evaluated by a health care professional.

When I received the cancer diagnosis, I would not have imagined that I would one day stand before large audiences, help develop cancer research projects and clinical trials, serve as a consultant for the Food and Drug Adminstration, or be a part of oncology conferences in the U.S. and abroad. I could not control what happened to me 17 years ago. But I found a life-affirming way to respond.

That's a good sign, right?

To learn the typical symptoms of inflammatory breast cancer, visit http://www.ibcresearch.org/.