It's deja vu. So many of the things she is experiencing are things I went thru with my mom and my dad. I'm reliving the heartache with every word she writes detailing what's happening with her mom. I wish I could take away the fear she feels now and the pain that will come later.
I am the ultimate optimist and I ALWAYS have hope, but I don't want to feed her false hope or be the cheerleader that she wants to strangle at the end of the day.....so I silently read her updates and remind her that I am here for support and love and prayers.
I think the question many of us in the patient support/advocacy field is how to balance hope with the reality of the disease state? Do we know suvivors of stage IV? Of course. Do we know a story or two of someone who survived impossible odds? Yes. Do we know someone who's defied the odds by participating in a clinical trial where the targeted drug seemed like it was THE magic bullet? Yes a few. Do we know a story or two about someone who did nothing at all, yet their cancer went away? I've got one of those too. But it's not the norm. For every story like that, there are thousands who lived 6-12 months with treatment with outcomes mirroring the standard prognosis we hear from the oncologist. That's a grim fact.
WIth more research, tumor testing, early detection tests and treatments, we are hoping to change those grim statistics and aid in the survivorship of people diagnosed with lung cancer....but as we work to make that happen, as the statistics slowly change, how do you have hope in the midst of it all?
For me, I balance the statistics with a story of hope. I recite the medical facts, with a story of someone who's proved that fact wrong. I focus heavily on survivors and success stories and if the patient wants to hear it, I'll share those stories with them.
I supported a man who had two tumors, relatively small, responded to treatment and went into remission, only to have it return the next month with a vengence and die 11 months and 21 days after diagnosis. That was my father.
That tragic personal experience should have ended all hope or optimism for me, but I've been amazed by the survivorship that surrounds me daily.
I support a patient who was given months to live and placed on hospice. She's lived 17 months with no treatment, is not on oxygen, feels great enough to go to Atlantic City on weekends and took herself off hospice. No one is more surprised than me! Her cancer is not gone, but she continues to live well and boggle her doctors.
I supported a woman who was told she had exhausted all treatment options and to get her affairs in order. Instead she found a doctor to peform a cutting edge surgery and she's been cancer free for 7 years.
I supported a woman who was told her form of lung cancer was the most agressive, yet she lived an addition 5 years with an exceptional quality of life.
It goes to prove that while we must understand the realities of this disease, we can still have hope.
So I'll continue to hold onto hope for my friends mom.
The ever-optimistic hopeful cheerleader.