Janis: "Mommy, will you still have cancer on my birthday?"
My mother was diagnosed with breast cancer at age 49 and at the time I was in my early 20's. I remember telling her it was one of the 'better' cancers to get. How naive I was at the time. I never understood her fear and as far as I knew BC was curable.
I was diligent about monthly self-breast exams and even had my first mammogram at age 35. I knew getting BC was a possibility, but not in my 30's? I was officially diagnosed right after turning 40. I was shocked when my pathology report came back that I was a stage IIIC just a breath away from Stage IV.
At the time my twin boys had just turned 4 years old. I was afraid for them. I didn't want their young lives affected by their mother having cancer. I never ignored the subject with them, but only shared with them what was needed at the time. That mommy had cancer and she was going to get chemo to take it away.
At the beginning of my third year following my initial cancer diagnosis, I started to have pain in my groin area. It came and went so I wasn't overly concerned. When I mentioned it to my oncologist he wanted to do a scan just to be sure. Well, it came back positive with metastatic breast cancer in the pelvis, hips, spine and a few spots in the lung. I was devastated. Everything I had learned about metastatic breast cancer had me greatly worried but I also knew that there was hope that I could live with this for a long time.
I have gone through 3 different rounds of intense chemotherapy over the past 6 years, had a hysterectomy, lost my hair 3 times, had a left total hip replacement, 2 rounds of radiation, and participated in 1 clinical trial. I have been fortunate to have responded to therapy each time keeping my disease stable or experiencing regression. I would say I seem to have a fairly decent quality of life.
The hardest part for me of living with metastatic breast cancer is having young children. My fears are centered on them. Will they be okay without me around some day? Will they remember me? Will those memories be filled with a fun loving mother or a sick person with a bald head? What will it be like growing up with a mother who is ill or gone? Those are the dark thoughts that bring me to my deepest sadness and tears. I often mourn for what might never be and that is the hardest part of being a mother of young children with a disease without a cure.
When my cancer came back I told my boys that I was going back into chemo. They were like "okay-whatever". One has to love the minds of 7-year-old little boys! Once one of my sons asked me if I was going to have cancer on his 8th birthday. I knew that he really meant - will I be sick and not be able to attend his party? Knowing this I said," Yes I will still have cancer but I am sure that I will feel good during your birthday." Around this time, my other son was having a lot of anxiety issues at school and when he talked with his school counselor she asked him if he was worried about his mother, he said, "No, she is fine, her hair is back." Another time the same son said that some of his friends felt sorry for him because his mom had cancer. (This was my 3rd round with losing my hair) I asked him if he felt that way? He replied "No! You have done it 3 times and survived" and then smiled.
Now at the age of 10, my twin boys have taken my cancer in stride. They accept that I do ‘treatments' every week and I have taken them with me once or twice. I take these as good signs that my boys are adjusting, growing and thriving despite living with a mom with stage IV breast cancer. They are normal happy boys with all of the normal growing pains of childhood.
I continued to work full time for 2 years after my initial diagnosis with mets. After completing a clinical trial I decided that this was going to be a never ending rollercoaster ride and that I needed to go on long-term disability and retire from my career that I loved. I was fortunate that my long-term disability insurance and SSDI benefits made this possible. It has been the best decision I have ever made. Being a mother of 10-year-old twin boys and fighting cancer is a full time job.
I am now into my 3rd year of living with metastatic cancer and doing well. Most people who meet me have no idea that I am living with cancer. I speak openly and realistically about my future and I think it makes most people uncomfortable.
Today I live life to the fullest. I truly feel that educating myself in the pathology of my disease, its characteristics and understanding the different treatments available to treat my cancer helps me cope. I strongly feel that we must be partners with our health care providers to get the best possible care. We must question, challenge and make decisions together on what the best course of action is for us. I also believe in being honest with my children and when they ask, I share information I think is appropriate for them to hear.
I have never told them that there is no cure or that it may take my life someday. I want them to live a normal childhood with love and laughter. I try to attend all school functions, plan family time and take as many family vacations as possible. I have learned to cherish all moments and milestones that we have today and try not to think about my tomorrows.
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