Esther Levy, a mother who describes her family as “the luckiest of the unluckiest people in the world” offers an inside view of her struggle to balance hope and fear. Her story may lead to new insights about the challenge of figuring out what to hope for when the outcome you want most is not likely.
To be an exceptional responder, you must maintain hope that treatment will work for you, even if it rarely works in patients like you. My concern about success stories like mine and Ella Remmings' is that some people draw the wrong conclusion from stories of exceptional responders.
If your treatment options offer only a small chance of improvement, how do you know if you should proceed with hope of being an exceptional responder? It's a question Ella Remmings addressed in her email message mentioned in my last post.
Perhaps the greatest challenge for Healthy Survivors is deciding when it is time to let go of hope that treatment will help. "If I believed the statistics," Ella Remmings emailed me, "I would have been gone a long time ago. My chance of surviving Stage IV gallbladder cancer for five years was a whopping 5%. My oncologist said it would be more like six months. I was only 45."
Why does When Breath Becomes Air succeed where so many other books fail or, at best, only come close? Using memoir format to offer useful lessons on life, author Dr. Paul Kalanithi had the exceedingly rare combination of all the following:
In my January 7th post I asked: How do you know if you are pushing yourself too much during or after cancer treatment? My first piece of advice was to discuss your symptoms with your physicians. What if your physicians cannot give you a clear answer?
I regret the times a stupid platitude popped out of my mouth in my efforts to comfort or support. Sadly, I'll continue to screw up because platitudes are ingrained in our culture of comforting. My hope is that the more I talk about the problem, the fewer times I'll say something that mght harm another.
In a few clinical situations, patients with a potentially curable low-risk cancer have the treatment option of active surveillance. What is active surveillance and what are the challenges of pursuing that option?
To shorten patients' wait, why don't nurses relay scan results to patients? Given that I desperately want to minimize the time patients wait for results, here are reasons why I think that is not the answer.
Many reasons explain why it can take so long to get test results. I strove to get results to my patients as fast as possible, especially when their waiting was stressful. But even more than I wanted to deliver news quickly I wanted to deliver news well.
I welcome disagreements, such as a response to my September 9th post on how clinicians can help minimize patients' scanxiety. A reader posted, "The pollyanna spin/advice on this may help some. For me, I'd just roll my eyes and say, 'You're kidding. Right?'"
A common problem among cancer survivors is scanxiety: the anxiety elicited by undergoing and waiting for the results. As a Healthy Survivor, I've explored how to minimize scanxiety. in Minimizing Scanxiety" I've shared with clinicians what I've learned.(Oncology Times July 25, 2015)