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Your Stories is a mini-podcast series featuring the unscripted conversations between patients, doctors, and the family and friends who conquer cancer with them.  Participants share their inspiring experiences as wives and husbands, daughters and sons, and sisters and brothers whose lives were interrupted by cancer.

Disclaimer

The purpose of this podcast is to educate and to inform. The podcast is provided on the understanding that it does not constitute medical or other professional advice or services. It is no substitute for professional care by a doctor or other qualified medical professional and is not intended for use in the diagnosis or treatment of individual conditions. Guests who speak in a podcast express their own opinions, experience and conclusions. Neither Conquer Cancer, the ASCO Foundations, nor any of its affiliates endorses, supports or opposes any particular treatment option or other matter discussed in a podcast. The mention of any product, service, organization, activity or therapy on a podcast should not be construed as an endorsement.

Feb 6, 2018

Decades ago, when Deb Mayer began her career as an oncology nurse, a cancer diagnosis was discussed in a whisper. Few treatments existed to extend a patient’s life, and survivors were not a patient population the oncology community considered. Fast forward 40 years. The hard conversations about life and death no longer elude us. Mayer learned first-hand what it feels like for a patient with cancer to consider the worst – she too is a survivor. As the only nurse appointed to former Vice President Joe Biden’s Cancer Moonshot initiative, Mayer shares with friend and colleague, Kathy Knafl, why she lends her voice to the ever-growing group of conquerors in need of information and guidance on life after cancer. We hear from Deb first.

Decades ago, when Deb Mayor began her career as an oncology nurse, a cancer diagnosis was discussed in a whisper. Few treatments existed to extend a patient's life, and survivors were not a patient population the oncology community considered.


Fast forward 40 years. The hard conversations about life and death no longer elude us. Mayor learned firsthand what it feels like for a patient with cancer to consider the worst. She too is a survivor. As the only nurse appointed to former vice president Joe Biden's Cancer Moonshot initiative, Mayor shares with friend and colleague Kathy Knafl why she lends her voice to the ever-growing group of conquerors in need of information and guidance on life after cancer. We hear from Deb first.


When I started in oncology in 1975, there wasn't survivorship as a field, because people didn't live that long. And when they were diagnosed with cancer, it was just at the time where we were starting to talk about it and even name it. And tell people that they had cancer.


Because prior to that time, it was the whisper--


That's right.


We didn't tell people because it was bad to do. In 1975, the five-year survival rate for all cancer survivals was about 48%. So not even half of the people lived five years. So we did palliative care from day one for all of our patients. And it was, to me, all about symptom management. Because if you can't relieve suffering, you know, no matter how much time you have left--


Right.


But over time, we now have almost 70% of people live five years or more.


So did you call it palliative care back then?


No, we just called it care.


We just called it care. Yeah.


Yeah. Now very little care is done in the hospital. You can actually be diagnosed and treated and never be in the hospital.


Yeah.


And most of the care we have shifted to the family and the caregiver. Most of this is going on in the home. My analogy is, we get the snapshot, they do the video.


Yeah, you were involved in the moon shots cure cancer, and you might want to say a little bit what the moonshot was on.


Vice President Biden put together the Cancer Moonshot at the direction of President Obama, because of his son Beau and his brain tumor, as well as his interest in health care and cancer care. So they put together, working with the National Cancer Institute, a panel of 28 leaders and experts from around the country, and I was the only nurse appointed to that.


What I brought to the table was not only representing nursing and cancer nursing, because we're the ones that do all the work.


Yes.


You can develop the best pill in the world that's going to cure everybody, but if you can't get the patient to take the pill, and manage the symptoms related to the pill, it's not going to matter. I was also there representing the survivorship community, which now that we have made such progress in helping people live longer, there is now 15.5 million Americans who have had cancer.


And that's 5% of our population. And if you're cured or have no evidence of disease, then you're sort of left on your own to figure out what the rest is. And that's when the survivorship movement started building in the '80s and '90's to say, don't forget about us. We're living with the residual issues of having the diagnosis, whether it's physical or psychological, as well as the long-term and late effects of what we've done to them to get them there.


Yeah. I love the picture with you and Joe Biden.


I had my 15-second photo talk down, and I look up, and I'm like, oh, my, God, he's tall. And he's got gorgeous blue eyes. And it's like, oh, I think I'm in love.


It was one of my personal highlights.


Yeah, I did-- I guess I've always been, frankly, really impressed with your ability to make a difference on multiple fronts as an educator, as a researcher, as a clinician. Do you see any one of those as the driver?


Being a clinician drives everything.


OK.


Because my obligation to my patients of today is to learn lessons that make it better for the patient for tomorrow. And my whole career has been about improving cancer care. I need to share what I've learned with others, so that they don't have to learn those lessons over again.


So I thought maybe we should end up talking about the walking group.


We were so excited that you were coming as the associate dean for research at the UNC School of Nursing. We had established a walking group every Saturday morning, which was as much for social as physical. And so we walked by what we knew was going to be your house, and got up on the porch to look in the windows, because we weren't sure if you were there. And you and George looked back out.


Yes, we did.


And so that started it. And then you joined our walking group. And we've been doing it for almost 10 years.


Over 10 years-- we've sort of intersected for an hour every Saturday morning, have these conversations. I think you were already a survivor when I joined the walking group. Tell a story of your experience with cancer when I was diagnosed, my daughter was 15. And when I was having some pretty extensive surgery, there's always a risk with surgery, even though I had a good outlook and a good prognosis.


So I made sure my affairs were in order, to the point that I was asking a very good friend of mine, who my daughter really likes, if when the time comes, she would take my daughter for her wedding dress shopping. And to make sure that those kind of things were taken care of.


And my friend said, well, I'll take her shopping even if you're still alive.


And obviously that wasn't going to be an issue. But it makes you think about the future in a different way.


The Conquer Cancer Foundation's mission is to conquer cancer worldwide by funding breakthrough research and sharing cutting-edge knowledge. To learn more about the participants in this session and others like it, please visit Conquer.org/storycorps. Recorded and produced by StoryCorps, a national nonprofit whose mission is to preserve and share humanity stories in order to build connections between people and create a more just and compassionate world. Learn more at StoryCorps.org.