this post is cross-posted from Get Out Gertrude by Jenny (jaydub26)
We got to know each other through each other’s blogs and like me she was a bit of a twitter addict and we were also facebook friends. Even though we never met (she lived in America – I live in New Zealand ) , through all these avenues she became part of my every day life – a real friend, and I will miss her.
I had planned and written this post in my head already but with Sarah’s death, it makes it all the more real.
One of the reasons I don’t write more about advocating for change, education, research, a cure is because it requires me to quote facts and figures – statistics that in my every day life I try really hard not to think about.
Sarah had metastatic breast cancer
The American bloggers I follow that went to the NBCC advocacy conference were given a presentation that gave some facts around that –
From The Cancer Culture Chronicles : In America 30% of people receiving a breast cancer diagnosis are known to go on to develop metastatic disease and metastatic disease accounts for 90% of breast cancer mortality with around 40,000 deaths a year
from Uneasy Pink came a link to a video presentation they were given (click on the link – I dont have the capability to embed video in my blog) that states in 1991 (in America) the deaths from breast cancer were on average 117 a day , today it still averages 110 ( I would imagine that adjusted and worked out on a per capita basis New Zealand deaths from Breast Cancer would be about the same).
That is 110 ‘Sarah’s (somebody’s wife, mother, sister or friend ) dying every day from metastatic breast cancer.
My friends Susan at Toddler Planet and Elizabeth at The Liberation of Persephone both IBC survivors like me, also wrote about these statistics and how we needed to change the conversation from awareness to really finding a cure.
Especially around IBC those facts and figures are even worse. In a recent article Dr Christofanilli, one of the leading experts on Inflammatory Breast Cancer said “most women in whom IBC is diagnosed eventually experience a recurrence and die from the disease—highlighting the need for further research.”(approximately 75%), and “is the survival of women with IBC in the 21st century similar to that of women with LABC? In a retrospective review of women in the Surveillance, Epidemiology and End Results (SEER) registry, our group has recently shown that women with IBC who were treated between 2004 and 2007 in settings where a multidisciplinary disciplinary approach to treatment is considered standard of care, continue to have poorer survival outcomes when compared with women with non-IBC LABC”
Well the statistics pretty much suck, don’t they, for those of us with IBC!! We are living longer with newer targetted therapies (5 year survival now 40%) but once we are metastatic that is based on a control rather than cure model. At the moment we will, almost 90% of us of we that get metastases, eventually die of metastatic disease.
I live with the fear everyday that ‘the cure’ will not be found soon enough for me. But I try not to let myself feel it – if I let myself feel that fear, I would not be able to function in my everyday life. Be the wife, mother, student, friend that I want to be.
But sometimes I have to let myself feel it and face my own mortality. One of my friends sent me a song via email last week that made me feel sentimental and weepy for the first time since I found out about my liver. The song and the sentiment weren’t anything to do with my cancer but allowing myself to cry over it opened the flood gates and allowed me to be open to feeling the fear and other feelings I had been trying hard to suppress. That song and two others were on my playlist a lot last Thursday and Friday and as I said to my cancer society counselor yesterday I actually really liked the way it happened and I thought it was a good cathartic release and much more controlled than if I had let it build up longer. It wasn’t like I let myself bawl my eyes out uncontrollably. I just let myself think about things and feel things and let the tears fall if they came. I felt I was in a really good head space afterwards for letting it out.
I have two songs I listen to when I want to allow myself to connect to those emotions. One is ‘The show must go on’ by Queen and the other while I am not a huge fan of country music is ‘ Live like you were dying’ By Tim McGraw – both of them are about facing your own mortality and dealing with it, living the best life you can or living your life your way until the end. Which is what I will try to do.
Don’t get me wrong, I don’t sit around thinking I am going to die anytime soon, but I just acknowledge what is the most likely scenario for my death. That I will in most probability not live to be an old lady.
Today I cried again, for Sarah, who lived her life – loving it, finding the joy in the photos she took, her dog Finny (of who she tweeted many pics), her three children and her husband. Loved your spirit Sarah and hope I can handle things with as much grace and hope and love as you did.
Edited to include what Laurie pointed out in her comment below: it should be clarified that Sarah didn’t have IBC. Her cancer was, however, triple negative, which suffers from the same lack of awareness and lack of research funding as IBC and is (like IBC) also more likely to become metastatic than other forms of breast cancer.