Shownotes
Women who are newly diagnosed with breast cancer are shocked at how emotional the experience is. They’re finding that their emotions range from extremes as everything seems to all of a sudden get amplified in their life. Diane Simard, author of The Unlikely Gift of Breast Cancer, goes into her own personal experience of going through and surviving Stage 3 breast cancer. She’s here to talk about her book, the diagnosis, her treatments, and her advocacy for individualized psychosocial support for cancer survivors and their caregivers.
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The Unlikely Gift Of Breast Cancer with Diane Simard
I’m Diane M. Simard coming to you from Bye Aerospace in lovely Centennial, Colorado. I’m thrilled to be on the show as part of a follow on. I’m here to talk about my experience now that I’ve published a book that I wrote called The Unlikely Gift of Breast Cancer. I’m here to talk about how much fun I’m having integrating my life as an author and also my life as a Senior Vice President and Board Member for this amazing company that’s developing what we believe will be the world’s first FAA Part 23 certified airplane called eFlyer. We’re targeting the flight training market. What I’m finding out is that my book, which I finished and published, is appealing to two different sets of folks. One is newly diagnosed women with breast cancer who are shocked at how emotional this experience is. They’re finding that their emotions range from extremes and as I always say, “Everything seems to all of a sudden get amplified in your life.” Your highs are higher, your lows are lower. What this book does is go into my personal experience. It’s not a self-help book or “Do this, don’t do that” book. It’s the story about my experience, how I felt these same emotions and what I did about it.
Secondly, the other group that is finding this book appealing are those who are either survivors themselves or caregivers to survivors who wonder what this experience is like. One thing that I did is I set out to capture what it tastes, feels and smells like to go through what I call the nuclear bomb treatment, which includes chemo, surgery and radiation. It’s a very vivid recap of what I experienced, how I reacted, how I responded and what I did about it. I happen to find that journaling was very soothing for me. That journal is what turned into this story that I just published.
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Diane, thank you so much for sitting down again. This is our second time. For many, if not all, we all have cancer somewhere in our families. It’s been in my family. We had a friend that got re-diagnosed here. The journey continues. What I thought was most important about this is that you had the courage and foresight to write the book, put yourself out there and push yourself at risk. At the same time, you’re very busy with Bye Aerospace and life goes on. I wanted to make sure we did this and why in this show? The cancer for you was during your business career. There are many different business owners that have either themselves or loved ones or people in their business that are diagnosed with cancer. I thought it was important to go back to this again. We’re going to talk about the book. Some of the things that maybe people don’t think would be what they would think is an outcome. For the book, diagnosis, treatment and advocacy, let’s talk about that.
Writing the book was part of my healing process and continues to be. I journaled. I couldn’t find anyone to talk to and I asked my oncologist for a therapist that I could meet with one-on-one who understood what it’s like for a Type-A business executive for myself, who very much needs to think she’s in control to go through this process. Statistically, we knew the outcome likely was that it was going to be treatable and go into remission, which thankfully it did. However, I was more concerned because I think in terms of I would say a chess player. I’m often thinking five years, ten years out. I was concerned about how this traumatic experience was going to impact me psychologically over the long-term. It was when I asked my oncologist for a referral to a therapist and she didn’t know of anybody, but she recommended group therapy, which I’m not a group therapy person. Then I started digging into why there’s a lack of practitioners. As it turns out, there are therapists who do see cancer patients.
The key is though that most of them get their training either at the post-doc level or on this side. It’s very specialized. I found that no one at any university in this country was offering oncology psychology training at the graduate level while they’re still in school. Because of my business background, I saw this as an opportunity if I seed funded and launched this specialty. It’s called the Center for Oncology Psychology Excellence or COPE and it’s at the University of Denver. It would start to bring attention to the importance of how big of a gap there is in our healthcare system. It’s not just cancer, but other traumatic health experiences that were not paying any attention really to the individual experience. My cancer experience is likely different than other breast cancer patients because of my body chemistry, my background, how I deal with stress and trauma. I hope that all of this attention that the book is bringing in that I’m trying to do during my advocacy brings more attention to the importance and the long-term impact psychologically of such a traumatic health experience.
How long has COPE been in place at the University of Denver?
It’s two and a half years old. It was launched in February of 2016 about three months after I finished my formal treatment. The first classes were offered in the fall of 2016. I’m so pleased that since COPE was launched that 64 students have either taken some or all of the COPE classes. There are four classes in the COPE offering. In addition to a classroom component, there are clinical components because these are clinical psychologists, the psychologists that will see patients as opposed to research psychologists that are doing the research work. It’s the COPE Clinic aspect to it. In its first year alone, the COPE students provided over 7,000 hours of assistance to cancer patients, survivors and their caregivers at the COPE Clinic.
You should be grateful and happy that you're alive.
I think about the math of the hours. There’s the concept of the class when it first was launched and what the student’s going through and getting the feedback from the crowd, for lack of a better term. What did you see on the evolution of COPE from ’16 to ’17 to now?
There’s quite a demand for it. Because of the work that’s being done to start to try to rid at least our culture of that stigma of you have a mental health problem, that the brain is part of the body. Sometimes the brain gets impacted because of traumatic experience, war experience, cancer, divorce, death and that your brain can start to not function again as it should. It is the early efforts to bring more attention to the fact that you’re not a horrible person. You’re not purposely trying to do these things. Your mind is just not working properly. The early results are that several survivors have reached out to me to say, “I’m a three-year, five-year survivor. I am having PTSD nightmares like you wouldn’t believe.” People respond to me this way too is that, “You’re a survivor. You’ve survived cancer. Your cancer is in remission. You should be grateful and happy that you’re alive.”
What happens is that you have these emotional triggers. An emotional trigger could be a certain smell. For me, it’s a piece of plastic Tupperware in our cupboard that when I was going through chemo and barfing up a lung every other week, some friends gave us some frozen meatballs in this piece of Tupperware. I see that in the cupboard and I get nauseous. It’s a trigger and I’m very interested in the research aspect of this too. There was one study done a couple of years ago and the cohort of the group of survivors of all types of cancer that were studied. It was about a group of about 500 survivors. At the six-month mark, after their treatment ended, 21% of this group was diagnosed with PTSD. It appears that the PTSD symptoms spike at the six to twelve-month post treatment mark. At the four-year mark post-treatment, that PTSD percentage is going back down to the national average, which is about 6.8% of those citizens in our country that are experiencing PTSD from whatever trigger or reason at any given time.
I think about the folks that are reading and they’re going, “All she’s missing is a cape with a big S,” and you think about that. The folks that are thinking about this, how did you get the book done and work full-time too?
In Bye Aerospace, this is our twelfth year. I’ve been an employee and I’m very interested in what we’re doing and an investor from almost the very beginning. We certainly had our lean years as any company does. This launched right before the recession of 2008 started. I worked through treatment and it lasted ten months. I worked as much as I could, which was on average about half to three-quarters of the time. My business partner, George Bye, was so wonderful about allowing me to have the time that I needed to be home trying to recover. You’ve said it before, they do their best to try to kill you during this treatment process. As I was coming out of treatment, getting my energy back and rediscovering who I was, I found that spending 30 to 60 minutes at my home office writing every morning was a key part of my recovery.
It was that therapy. It was capturing. It was how this came about was that I ended up writing the first manuscript for this book exactly a year after it happened. I remember one morning when I was working on the chapter about my first chemotherapy infusion. As I was writing that exactly a year later, I had to run to the bathroom and thought I was going to be sick. That’s the point of how powerful this is and how your mind is so vivid still. I think personally for me, forcing myself to relive it, but to do something about it, to have a life raft called a book, a Project COPE. Something to say, “We can do better at this treatment process,” and to grab onto something and to be able again to integrate is that part of my life. The advocacy work with which what we’re doing here, which is revolutionizing general aviation. Showing that it can be done as electric cars have over the last decade come into their own and we’re seeing efficiencies. We’ve got kinks that have got to get worked out.
The Unlikely Gift of Breast Cancer
The point is that this is doable. The battery energy densities are improving. All the goodness is there. We’re integrating all of that together. Much like I’m integrating my post-cancer advocacy work, which is still important for me to continue, to be positive about this. That’s why I titled the book the way that I did, The Unlikely Gift of Breast Cancer. I learned so much about myself, my upbringing, why am who I am? Having been trained as a journalist and now having the chance to finally have my own voice as opposed to being a business writer my whole life and writing everybody else’s speeches and press releases. The doors have opened for me and I’m so grateful that others are responding to the fact that this can be an experience of self-discovery and transformation.
It’s not a desired sorority or fraternity to be a post-cancer survivor. The thing that I was thinking about as you were talking is as you’re innovating, advancing, reflecting and doing what you do in the business world, you have a long history of being successful in the business world. You think about how in the world do you take this particular horrific experience? I remember you were talking about the red, whatever it was that they gave you. Your comment was, “If it spills outside of the injection site, it’ll burn your skin.” All I could think of is, “What’s it doing on the insides?” I think about how to turn this around and create something to help others. I read the book. The part that sticks in my mind the most is when you were driving your car and yelling away.
It’s like the arc of the book. What you are describing is I’m about halfway through chemo, sick as a dog, trying to slug through life and praying that I’m going to survive treatment. I had never gotten angry. I had come from lunch with a dear friend. All we talked about was cancer. As I went on and on about it, I wouldn’t shut up about cancer. I made this comment, “I’m so sick of talking about cancer. This cancer cloud follows me everywhere.” She interrupted me and she said, “Diane, you start living your life again as though you don’t have cancer.” It was brilliant. That was the moment when I realized I can make a choice whether or not I let cancer define me. I decided I didn’t want to be defined as the cancer survivor first and foremost.
What I wanted this to be is an illustration of how something so traumatic can be turned around, turned on its head and to say, “I can be challenged.” I certainly found out the depth of my strength and ability to bounce back, but I was determined to say, “This is going to change me.” For some reasons, people are interested in because by this time I was starting to send out updates about what this was like. Many of our friends were responding to the details that I was describing that. They’re like, “No one ever wants to talk about cancer.” I’ve always had these questions. I’m like, “Ask me anything.” It’s okay to talk about it or not talk about it. It’s whatever is in here that feels right for you. I often call myself an enigma because I have all these contrasts in my life. I’m a control freak. I look at things differently. I look at challenges as an opportunity. I’m more interested in what people do to come back from adverse situations than what they did to make themselves successful or whatever.
You have to see the bad before you can appreciate the good.
In the book, there was one point where you said, “I decided to cut my hair off before it fell out.” You’re going like, “I’m going to exercise control where I can.” Sure enough, treatments and whatever remained fell out.
To use a business analogy, how many of us have been in business and you know the day’s going to come when you have to make some cuts? Cut staff and cut expenses. My experience has been that there are those CEOs and leaders who see this coming, hate it and wait to the absolute last moment when they’re barely hanging on by a thread before they do it. There are those that say, “All indicators are such that this isn’t going to get better. We’re going to have a plan for how we’re going to come back from this, but in order to do that, we need to make these changes right now.” You can certainly continue to pray and hope for a miracle.
It’s a pretty thin strategy.
What it does is it beefs up your plan. I’m going to be the one that takes the biggest cut or whatever that plan is. You show leadership. You show and you’d be proactive to say, “I don’t want to wait until the absolute last minute to watch my hair fall out in the shower.” I didn’t want that additional self-inflicted trauma because I knew that was going to take me over the edge. I had my hair cut off five days after my first chemo infusion because my hair felt brittle. It’s awful. It felt like I hadn’t washed all the shampoo out of it. My husband helped me. It was very liberating for about 24 hours until again those emotions came back into play. I went back to the office. I came here the next day and I was so nauseous. The color of the wallpaper made me sick. It was incredible. The reason for me is that the anti-nausea drugs are as I jokingly say, “Mind-bending drugs,” but it is working with your mind and trying to convince your body that you aren’t sick.
The red devil called Adriamycin, I’d equate it to a drain cleaner, is what it’s doing because it’s wiping out those unhealthy cancer cells but at the same time, it’s got to kill off the good cells. Why I lost a lot of weight during those four chemo infusions is that your body uses all the calories. It turns it into energy to rebuild the healthy cells that have been obliterated. The problem with me was that when I switched chemo drugs for the second half of chemo, I had that infusion every week. Those steroids that are so important to tolerating nausea and the side effects, then all of a sudden it’s grabbing all the water and all the fat you’re putting in and the opposite happens. I was putting on a pound a week. I’m still eating as healthy as I could and trying to exercise and it’s brutal. It could not be more frustrating and dehumanizing of a process.
For many folks, they talk about the pivot point. The character is defined not so much about what you do when things are going well. Character truly is defined by when things are not going your way. I think about this and you’ve been through business challenges. You’ve been through the health challenge and so on. There are probably other business owners out there. I’ve had a few challenges I’d like to share my thoughts after success, after coming back from the challenge. What advice would you offer to that business owner that’s out there thinking about writing a book?
For me as far as finishing a project like this, it was so cathartic. This was a very spiritual experience, a spiritual awakening. I had already had it with organized religion. I kept having these thoughts calling God moments or whatever, but it became so important. My friends and those who knew me gave me such affirmation to say, “We want to read about what it is that this experience is like.” All the signs were there...
