By Eileen Kastura - July 11, 2012
I first met Eileen at the Metastatic Breast Cancer Network (MBCN) conference in Baltimore last year. She stood out from the crowd, partly because of her fabulous shoes but also because she was incredibly vivacious. Eileen's story was compelling to me and I asked her to write about her experience. She told me she had just written something and sent it along. What I discovered were select journal entries from her original diagnosis in 2008. What I love about this is how Eileen expresses her concerns and fears in what she calls "Thought for the day", and how her personality, determination and actions are expressed in "What I know for sure". Recently, at NBCC, I ran into Eileen and her daughter who is an emerging leader. Eileen danced the entire night ( I have proof) and had what looked like a hell of a lot of fun doing it. "This" she said, pointing to herself, "is the face of metastatic breast cancer". -Christine Benjamin
July 2008: Today I decided to go upstairs and watch TV as my husband Dave was watching a "geek" show that did not interest me. I lay down and noticed that my left breast did not, shall we say, relax like my right one. I started to feel around and found two lumps. One was in my breast and the other was under my arm. OH GOD! …was my first thought. This can't be what I think it is. I went downstairs and had Dave feel what I had. "Let's go to the hospital" he said. I knew what it was right away, but had to go through the process.
Thought for the day: Will my children loose their Mom to early as my husband did? He was just 16 when he lost his own mother to Breast Cancer in 1982. My oldest daughter is starting her senior year of High School; will I be there to see her graduate?
What I know for sure: I will do what I have to do to fight this thing.
August 11 2008: Today I got the news that I have stage III, triple negative breast cancer and I carry the BRCA1 gene. I am 43 years old. I learned how this mutated gene increased my probability of a cancer diagnosis. I wish my family had known earlier, so much would be different. I have spent my adult life as a fitness freak, health foodie and positive person. After years of exercise, good food and a good attitude, it turns out I have no control of my DNA and my cancer diagnosis.
Thought for the day: Who else in the family inherited this gene? Did I pass it on to my daughters? Thank you, God. I can perhaps spare future generations of a cancer diagnosis. Maybe this is my purpose? If this is my "purpose," I accept.
What I know for sure: I will keep informed and pass on what I know to others!
August 30, 2008: Today is my 44th birthday!
Thought for the day: Will I see my 45th birthday? Will I see my youngest daughter start her senior year of high school? My future seems so unclear and yet the old me, the positive me is still here.
What I know for sure: Today I will celebrate the day and each one to come!
September 15, 2008: Chemo has started and my hair is falling out. I guess that will make the morning easier. No blow drying necessary. Today I found out that both my sisters carry the same gene mutation as I do. Our 50/50 chance of inheriting this gene has now gone up! Three down one to go...will my brother test positive also?
Thought for the day: I still can't believe this whole thing! I had no history that I knew of and now three of us are at increased risk. Wow!
What I know for sure: My chemo is working and the tumor has responded quickly. This feels good. I know I am doing all I can do.
January 15, 2009: Tomorrow I have my double mastectomy. I feel positive about this. I know I am doing what I have to do. I feel like telling my breasts "We have had some good times together, now it's time to go." That thought makes my smile and I will remember them fondly.
Thought for the day: Will it hurt?
What I know for sure: I have made it through 20 weeks of chemo and this surgery is necessary. Besides, I could use a little R&R. Right?
August 30, 2009: Today is my 45th birthday. I made it!! I had the privilege of watching my daughter graduate. I had my surgeries, radiation and my scans were clear. But why is this lump under my right arm not going away? I am getting nervous now. What does this mean? Oh, by brother did test positive also. Amazing 4 for 4. And we found out that we inherited it from our Father. He was an only child so not much history there.
Thought for the day: Is the cancer back?
What I know for sure: I took my daughter to college and got her settled in. For this I am thankful.
September 2009: It's back....mets to my right lymph nodes and dermis.
Thought for the day: Stage IV, seriously! I thought I would have more time. Stage IV...
What I know for sure: I will do what I have to do! I want to see my youngest graduate!
August 30 ,2010: Today is my 46th birthday! I am so thankful for each one I have!! I want to shout it from the roof top "Hay, I am so blessed to be 46 today"!! My youngest starts her senior year next week. CELEBRATE! This is what dreams are made of. Looking back on the past two years is becoming easier. It is like having a baby, at first you can't believe you are pregnant, then your body is not your own, then the "big event" then the new normal. Does that make sense? I guess it's like anything else it just takes time to accept.
Thought for the day: After loosing my hair for the 3rd time I am no longer going to get to attached to it.
What I know for sure: I am making the best lemonade out of this lemon. I have met the most amazing, beautiful, inspiring women. They have changed my outlook, opened my eyes and filled my heart with love, hope and determination to march forward. I have now had over 30 chemo treatments and I am not sure when they will end, but I am still smiling and enjoying each day I am given. Will I see another birthday?
August 30, 2011: Today is my 47th birthday! BIG CELEBRATION. Yes, the gift of another birthday has been given to me and I am enjoying every moment!! Today I share my birthday wish with all the women who have walked this path before me, those who walk with me, and those yet to travel that we continue to work together to end this thing. I celebrate all of you! I did get to see my daughter graduate and head off to college. What an amazing gift that was. One test at a time.
Thought for the day: I will have another birthday! I love the word remission! I finished 53 chemo treatments! I am making a difference!
What I know for sure: I have found my passion and my passion is changing this disease. I believe in taking part in clinical trials, lobbying in Washington DC for funding, giving encouragement to others who are newly diagnosed and talking to anyone who will listen about how important it is to move forward and help make cancer a chronic disease not a killer. I am the face of metastatic disease and I matter!