a story

The New Year had just arrived. Oh, 1992 was going to be my year!! I had been a single mom for 4 years and had a few rough bumps with new relationships. I realized that I was looking for love in all the wrong places; what I needed was to learn how to love myself first.

I did learn....I learned a whole lot that year. I learned to live with a diagnosis of breast cancer, and not just primary breast cancer, which accounts for roughly 2/3 of those who are diagnosed each year, but with metastatic breast cancer. We account for about 5% of those diagnosed. Metastatic, or Stage 4, what did that mean? There are stages 5 and 6 right? Turns out that stage 4 meant advanced breast cancer; because it had already spread to my left femur (upper leg bone).

I was given choices by my oncologist even before I knew enough to ask what my choices were.
I eventually had a mastectomy, surgery to remove the tumor from my femur, 5 weeks of radiation to the femur, and 6 months of chemotherapy, leading up to an autologous bone marrow transplant (BMT)(using my own bone marrow) that took place in Tampa, at the Moffitt Cancer Institute in December of 1992.

But before that, I learned how to get my son, 10, and daughter, 7, ready for school and drive them and drop them off and then make the rounds of doctors, scans, surgery, unfamiliar medical terms, and so much unknown. I learned how to paint on my eyebrows and work with scarves, hats, and wigs to deal with hair loss. I learned how to laugh as I chose to live, so that my former husband wouldn't raise the kids!!!! I learned to dig deep into the recesses of my being and find the courage to face each day, as my children prayed along with their classmates for their mom to get better.

I did get better for awhile, which statistically was unusual, and had no symptoms after the BMT until 2003, when more metastases appeared in the hip bone. I have been receiving treatment since then, still working and being reasonably active.

Recently it hit me that I did not know other women like me...those living each day with metastatic disease. I guess I had too good of a support system with many friends and a close family! But I sought out programs at my local hospital to seek these other individuals who could share theri wisdom. But I couldn't find (sic) hardly any!! One facility told me they had had a Stage 4 group but it stopped meeting because of lack of attendance. Another one has groups but I am an anomaly.. most of the members are looking forward to ending treatment and do not share my concerns of knowing most likely I will one day die, as my mother and aunt did, of breast cancer.

It's like walking on a balance beam. I want to hope for the best, but I am going to prepare for the worst. I am hoping to bring awareness to our community that we are out there, and that we need services that are specific to our needs. I want to let other people like me know about the resources that ARE available on the web like www.mbcnetwork.org , to help link us together so we can be a voice like the original group of supporters amd survivors that led the way for more advocay, resaerch and awareness 30 years ago. 30 % of those diagnosed today with primary breast cancer, will eventually be diagnosed Stage 4. I want them to be ready.