This summer, I had the privilege of being invited to observe a meeting of a Komen Philadelphia Metastatic Breast Cancer (MBC) advisory group. I say “privilege” because, indeed, my eyes, my mind and my heart were opened in ways they haven’t been opened through more than a decade of work with the organization.
I walked into this gathering thinking, “Okay, I’m going to gain some insights that will help me do a better job communicating the purpose and vision of Komen Philadelphia’s new MBC initiative.” But what I walked out with was far – so very far – beyond my expectations. I left with life lessons and a re-energized mission in the fight against breast cancer. These “forever fighters” forever changed my life.
The group consisted of nine women living with MBC and two caregivers/advocates. These were nine women who have been told that they have a disease and, pointblank, they will not survive it. Nine women with a disease that comes with a median life expectancy of 26 months – a disease in which fewer than one in four women live past five years. I sat there and listened to them, to their acceptance, to their resolve to keep fighting… to statements like this, and I quote:
“I know one day I’m going to die of this disease, but in the meantime I am going to LIVE.”
I asked myself, “If I were her, would I have that same attitude?” I’d very much like to think I would, but to be honest, I don’t know. How can any of us know until we are walking in their shoes? When I realized I didn’t have the answer, my admiration and respect for this group grew all the more.
The group was diverse. Some women worked full-time, others worked part-time or were retired. Some had adult children, some had none, some had children who were very young. A few women were married, others were single. One had been married, until her MBC diagnosis. I get a lump in my throat when I share that her husband left her because he couldn’t handle living with a woman with MBC… that it was too hard on him. And when I recall this woman’s reaction – “You must accept whatever life hands you and you journey forward, with tears and with strength.” – again, my admiration and respect for this group, for all women living with MBC, grows all the greater.
Each one of these women, who I believe represent the whole of the MBC community, has so many challenges, so many hardships handed to them and that are beyond their control. If anyone has a place to say, “this just isn’t fair,” it’s men and women living with MBC. But not one of them in this group gave the slightest indication of being bitter or resentful. They have no desire to be pitied or coddled.
All they want is to be understood.
They want the same community that has rallied behind millions of breast cancer survivors and that celebrates these survivors day in and day out, to stand behind the MBC community as well. They long not to be treated like lepers simply because right now there is no cure for their disease. They do not want people to avoid talking to them because the idea of them not surviving MBC is much too difficult a topic to broach. On the contrary, these women desire the spiritual and emotional strength that comes from having those conversations, and from having a knowledgeable, reality-based support system.
At the end of this session, I was exhausted with the emotion of it all. I was also invigorated by all that these generous women had shared with me. Lastly, I was, well, a little ashamed as I thought about how much I had chose to paint a happy face on breast cancer… to share the progress, to celebrate survivors. While I know all that is important too, my embarrassment came from my personally overlooking the MBC community, for me – as a woman – barely knowing this population of women existed, let alone realizing they needed an equal voice. I had an urge to personally apologize to everyone in that room. But, I had learned in those two hours, none of them wanted nor needed any apology.
I know there is still so much more for me to learn about the MBC community, about the needs of these forever fighters and about what I might be able to do to help. I also know that I will never be able to understand it all, nor do it all. But the summer of 2016 put me on the journey. And I do believe I’ve taken more steps since this one session – including writing this blog. I hope that through this I have brought more people into awareness.
In closing, I again express my admiration and respect for the MBC community. And with all my heart I thank those nine loving women who came into my life on June 21. Ladies, thank you for sharing so much of yourselves with me, for teaching me lessons that will continually shape my life.