A cancer diagnosis causes a trauma so powerful, it splits your life around that single point in time: the Before-Why, and the After-Why. Breast cancer survivor Diane Simard was the classic type A, small business owner, charging at 100 miles an hour when she received the diagnosis. She shaved her head before the hair fell out because she needed to be in control. Imagine spending $200 every six weeks to have your hair colored and cut for years – and now it’s on the floor. But Diane held her chin up and said to herself: “I’m going to save probably about $1,000 this year.”
Diane Simard seed-funded the Center for Oncology Psychology (COPE), an organization that continues to change lives for the better. She hopes that with her efforts, more women would not have to go through the humiliation of feeling raw and naked in front of random passersby.
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The Evolution Of “Why” With Breast Cancer Survivor Diane Simard
We’re incredibly fortunate. We’ve been welcomed into the home of Diane Simard. We’re going to have a bit of a different podcast in that we’re going to talk about before-why and after-why experience. Diane, thanks for taking the time and extending the hospitality of your home.
My pleasure, Bob. Thank you for being here.
For the folks, if you would thumbnail sketch a little bit of background and then we’ll dig in.
I wear many hats. I’m part Angel investor, businesswoman, philanthropist, a breast cancer survivor, and I’m also very passionate about bringing attention to the psychological impact that a cancer diagnosis can have on an individual.
It’s interesting when we were talking before we started the episode at the various directions we could go. You were the classic type A, hard-charging, small business owner, development person, 100 miles an hour, and you had an event. I don’t know if it was a routine exam or what, but take us to that experience for you.
I was 49 and a half years old and maybe it’s this way from men too, but certainly for women, turning 50 is a big deal. There are a lot of changes that happen to our body during that time. At 49 and a half years old in January 2015, I had my mind set that the next phase of my life was going to be a lot more peaceful. The previous decade had been very challenging business-wise. I had invested in a lot of startup companies and had not had much success. The success that I’ve had came from those companies that I was not involved with.
My ego had been hurt, but I was ready to live peacefully for things to be a lot calmer. I served on the boards of directors of several of the companies that I invested in. I was on the board of a bank that failed, and so the stress level had been monumental. I did what I was told to do, I’d had annual mammograms since I was 40 because I’d had a benign cyst when I was 40. It was routine and I didn’t expect anything would be different that year, but I got a phone call finally saying that the results were concerning.
I was called back for what’s called a diagnostic mammogram and also an ultrasound test. It was during that ultrasound test that the ultrasound technician let it slip. I’m an inquisitive person. I have a journalism degree. I’m always asking “Why,” the questions. She sat me up and she pointed it out and to me it looks like snow on an ultrasound screen. I said, “How can you even tell what that means?” She said “I’m not supposed to say anything but it doesn’t look good.” That was the day that I likely suspected something was wrong. The radiologist came in, he didn’t even want to look at anything, and he said, “We’re going to have to have a biopsy to determine that.” All of a sudden my morning went from, “Got to get to the office. We got to do these things now” to saying, “I might have breast cancer.” I didn’t mentally prepare myself for this, and so within the next 30 minutes I went through very quickly the stages of shock and anger and denial. Some of them I skipped over and I just accepted that I likely was going to have breast cancer.
I called my husband, Rene, on the way back to the office and he was joking around and I was all business and I said, “I may have breast cancer and I may die and I need you to make sure that all of these investments that I made, that nobody thinks that they’re going to get off the hook just because I may die from cancer.” That was my mindset within half an hour. I didn’t even know yet if it was cancer, but I had decided that it was. I arrived at the office and very quickly I was sitting there trying to figure out what do I do next? I’m certainly afraid. Do I tell people? Do I not tell people? I’m such a horrible liar that I decided to let my colleagues know that I likely had breast cancer and I did.
I was very open with them and I said, “I don’t know where this is going to go, but I’m going to have to have these areas of concern biopsy a week later.” The way this happens is that it can be a very slow process depending on how long it takes to get the information back. For me, it took four weeks from that day I had that ultrasound until the day I finally received the PET scan results. Four weeks of contemplating whether I was going to live or going to die. During that time, I began journaling because I had so much happening in my mind. I was speed reading through cancer books that I ordered because I should all of a sudden start eating healthy, start eating better, doing all these things because that’s what you do in business and I’m a fixer. You do these things.
It sounds a lot like what you would do with some of your startup issues. What’s the problem? We’ll go ahead and charge forth. Looking back on how you approached and told everybody what was going on, if you had that to do over again, would you do that the same way?
Yeah, I would. That’s who I am. I have to be honest, not to get it off my chest, but to say, “I’m freaking out right here and if I burst into tears, I’m scared.” They really didn’t know what to do with me because oddly enough, I’m the solutions person. I’m the one that they go to when they’re having challenges or to cry on my shoulder. It was very alarming and startling for my coworkers to see, “She’s so strong. She is so in control. Maybe she’s been cursed with breast cancer. What do I do now? How do I behave? How can we be there for her because she’s always been there for us?”
I think about the persona of bulletproof, always the solution, always the strong person and you got to go wake up and you go being strong and being type A and being in charge, but it doesn’t eliminate the risk.
No, it doesn’t. For whatever reason, I hadn’t been one who had eaten organically and I wasn’t that type of a person. What I was bothered by was the fact that dementia and heart disease is so prevalent in my family, cancer was not. I had bought a long-term care insurance policy, have the heart checked. I drink decaf coffee, have my whole life, but I had never done anything to prevent cancer. I’m like, “I didn’t even think about this. Could I have done anything preventatively?” Probably not, but it was never part of my stuff to worry about plan. I was certainly angry at myself for that. All that self-blame, but I also was thinking, “I’m going to assume that I may have to plan to not live through this,” because I had learned when it came time to making a decision, I always learned to assume the worst, and then if it turns out better than that, it’s all good.
You were talking about journaling almost immediately. How did that come to you?
Up until having breast cancer, I had never been comfortable expressing myself verbally. What I do in many of the jobs that I’ve done is be the number two person behind the person who is out in front with this magical voice who can express himself or herself. I’m the one propping them up, giving them the words to say or getting the press releases out. I felt more comfortable. The words would come to me at the computer and I would talk about how weird it was to feel the cold hand of a doctor.
Doctors have cold hands. I’ve always just picked up on those details my whole life. I found that interesting because very early on, even before I received the diagnosis, I felt like it was important to capture these details. What it smelled like, what it felt like, what it tasted like, how cold it was. It’s so cold in an MRI room. Just those little details because what I was looking for, as I was speed reading through all of these cancer books, I didn’t know anything about breast cancer. I had to Google breast cancer. 115 million responses came back, I was embarrassed.
I knew that for women, later stages for breast cancer meant you were going to lose your hair. That’s about all I knew. I was trying to get smart behind the scenes and acting like I knew what I was talking about. I had no idea. Certainly, information makes me feel comfortable, but I couldn’t find what I was looking for in terms of what to expect. There are plenty of books about cancer out there. Wonderful books, but I needed honest, candid information as opposed to the information I was getting at the time, which was the slick, shiny, lovely pictures of women in gorgeous bandanas and carefully applied makeup. I didn’t want the superficial. I wanted honest answers. Am I going to be sick? Am I going to lose my hair or not? Can I work through this? What I realized is that cancer is such a unique experience based on your body chemistry. I have a weak stomach. No one can predict what it’s going to be like, but I thought it might be helpful to capture these details.
There were a lot of people within our close circle of friends that knew that I had received a breast cancer diagnosis. The rumor mill was already circulating that it was late stage. I was likely going to die. I wanted to get in front of that but since I’m not comfortable with social media, I’m getting there, I sent out email updates to about 100 of our closest friends to make sure that the information they were getting about this was from me because I learned from my public relations and communications training to manage the message and I wanted to do that.
Apparently, I started to give a lot of these educational details about the process. I’ve had friends email back and say, “This is amazing. No one has ever shared this level of detail before. Please give us more.” That was my outlet. In fact, so much would jumble up in here during those four weeks of biopsies and tests and more tests and doctor visits and fear, that by the time I received the results of the PET scan, which ended up thankfully the breast cancer had not gone any further than my lymph nodes, that I had a plan. I knew what exactly what I was going to do if it was terminal and that brought me comfort, believe it or not.
You get your courses of action from your business career.
Things in a logical linear order. When I did receive the phone call from my surgeon, she and I played phone tag. You can’t leave a voicemail and say whether or not you have cancer. She was at a conference, I was in a business meeting. It took an entire day and so for that 24 hours before I got the phone call from her, I was in this vigil with God, a perpetual state of prayer and reliving my life and what I had done wrong, the stupid things I had done, how I had tried to be good and failed, all of that. I was ready to accept my fate and what the news was. When it was good news, I was so grateful. We just caught it in time.
I had annual mammograms, but my three breast tumors were so small that mammography didn’t pick up on any of them, only picked up on the largest tumor, which was only two centimeters in January 2015. My oncologist later told me that I likely had cancer for a couple of years. I’m an atypical anomaly of a person, typically those initial tumors get much larger before it spreads to the closest lymph nodes, mine didn’t. During that four weeks of all these tests, no one could feel them. The self-breast exam, everything that they tell, I did all that. They were too small, but it had already spread. This was all on my left side. I didn’t have any more biopsies of my lymph nodes because they were afraid that it would agitate the cancer and it would spread further. I only had one lymph node biopsy and it was cancerous.
Other than your test, you had zero symptoms?
I can’t feel a thing. I was fine. I was getting ready to turn 50. They thought that maybe all five of those lymph nodes were impacted, which is why I got the nuclear bomb treatment. I was amazed that, “Our testing isn’t any better than this?” All of these analyses that I was making, I cataloged in the back of my mind saying, “This is the best we can do. We are just going to give you as much chemo as we can throw at you,” which is what they prescribed for me. I had sixteen chemotherapy treatments first, followed by two because those tumors we’re so small, I didn’t have to have full mastectomies. It was an option, but it wasn’t going to help prevent the cancer from coming back.
Cancer's never invited and cancer never leaves.
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To me, there’s not a lot of logic to it and so I chose to have lumpectomy surgery and then I had 33 radiation treatments. The chemo started in late March and I walked out of the radiation room for the last time on December 21st. It was a good ten months of treatment. I did work as much as I could through this. I wouldn’t call it fulltime. I certainly wasn’t worth much at work because I couldn’t retain anything. I felt nauseous almost all the time during the five months of chemo and then I didn’t have the energy. This process zaps you. It’s amazing and there’s not a lot you can do preventively to make it go any better.
I think every family, one way or another, unless they’re incredibly fortunate, has cancer that’s gone through. Certainly, my family and you’re the poster child for your family. We try to explore why people do what they do and you had a clearly defined why pre-diagnosis. You were trying to excel and run a business and do all this stuff that you did and then post the treatment, post the radiation, post chemo, the good news is you didn’t have to go for a treatment the following week. You’re done with that, where along that path did you start examining or changing your why?
It was during chemotherapy. Admittedly, I’m not a recreational drug user and so the drugs that they give patients while you’re going through chemotherapy are mind-altering drugs. I was given Compazine, which is a drug that is given to schizophrenics. It’s telling your brain that you’re not sick. I had a particularly rough time because I was in a fog. I couldn’t make decisions and it was frightening for me. I’m such a control freak to now be controlled like that by a substance.
They give you a poisonous chemotherapy in your system and then they give you drugs to build up your bone marrow and then you have to take another drug. I always joked that it’s this pyramid scheme of how this is treated, but I had so much time to think. “This is really a trip,” and a few experiences that I had because I tried to live as normal of a life as possible. I didn’t choose cold cap therapy, which a lot of women and men could do, which is to freeze your scalp with dry ice while you’re receiving the infusion. It very often has been very successful to save almost all of your hair.
My oncologist in February 2015 said she’d had one patient who had used cold cap therapy, and had been very successful, but it had caused a lot of headaches and it was very painful for her. She said, “It’s still so new in this country.” In Europe, they had been doing it for decades because they do everything before we do here. It had just been started to be allowed here in this country the way I understand it, but my oncologist said, “We don’t have any statistical data yet that proves whether or not cancer cells can still hang out in your scalp,” because the chemotherapy is not getting to it. I said, “That’s it.”
I’m not going to take that chance because I’m a data-driven person. I need statistics. I need all of that, and I said, “I don’t like the thought of losing my hair, but I’m going to do it because I’ll never be able to look at myself again to make a decision like that.” Trust me, I do respect those that do want to keep their hair. It just wasn’t my choice. That was an example of I’m like, “Isn’t it amazing how I should be making all these decisions based on emotions? Am I going to live? Am I going to die?” but I went back and I made very logical, thoughtful decisions.
If you’re in a heightened emotional state and you were already altered by whatever drugs they poisoned you with this and then you’re supposed to make a rational, perhaps life-preserving or ending decision. At this juncture, looking back from the tail-end of all the treatments into the diagnosis that you received, would you do something different with the knowledge you have now?
Yes, only because the knowledge I have now is that there are a number of extraordinarily important improvements that will be made in this cancer treatment process. I try not to over-generalize because there’re so many different kinds of cancers and the treatments are very different. A lot of it has to do with how we’re capturing data. For example, in my post-cancer life, I’m trying to focus my interests now in areas and businesses that are forcing change within the system that impacts how this process and the treatment process works. An example is a company called QalibreMD.com and I’m on the Board of Advisors for them. What they are doing is they’re going to force change in the industry. In my situation I had that ultrasound and then I had to have a biopsy to determine whether or not the spot they had located was indeed cancerous.
After that happened, I had to have a breast MRI to see if there’s any more cancer that they hadn’t been able to see on ultrasound. They saw two more, and so I had to have those biopsied. What QalibreMD is introducing is a way to assign digitally numerically data points, biomarkers if you will, and assign numbers to those to say this spot may be a fatty tissue and we’re going to assign it this number. This is definitely cancer and it’s going to have its own number and they can eventually define what kind of cancer. What they’re going do, I hope is to do away with biopsies because the data that they get will clearly 100% identify through an MRI image that this particular spot is indeed cancerous or some other disease.
The data is created by the MRI machine and is fed back into an algorithm or whatever they have.0 The data exists currently, it just wasn’t interpreted.
They’re interpreting it. There are a million biopsies performed every year in this country and I had six of those million done in my year. Another side story why I’m so passionate about doing whatever we can to help make this process more efficient is that we know that there were three breast tumors and we found that out through three biopsies, one of which was a vacuum-assisted biopsy, which is as horrendous as it sound. That tumor was on my chest wall. They literally have to go in with what I call the Hoover vacuum cleaner and slurp away all of the tissue to get to that tumor. That was one of the more horrifically painful parts of this. I went for a second opinion because in business, that’s what you do. You get three quotes for this bid and that’s what we’re trained to do. I’m going to go for a second opinion consult. I did and it was a very efficient process. My primary provider where I had already decided I was going to be treated, they had looked at my right side and they were convinced that there was no cancer anywhere on this right side or in my lymph nodes.
The second opinion doctor said, “On the MRI that you had, we’re seeing one lymph node that appears larger than the other on your right armpit, and no one has given an indication or written an explanation of why that is, why they’re not concerned, so we’re going to have to biopsy that right side.” It’s in my book and I said, “Because of someone’s inattention to detail, I’m going to be butchered yet again.” I went along with it because I had so much to do. I didn’t have time to solve all these problems. I had get rid of cancer and get ready for chemotherapy. In my mind, I kept this list of like, “We can do better. We have to do better.” I can’t imagine for someone who isn’t as organized or is certainly completely freaked out and afraid, “How do you go through this if you don’t have the great support network?” I had an amazing support network and I was still a mess. I had to write everything down, capture every detail. That’s what brought me comfort.
As you were talking, you mentioned book, and everyone are going to go “What book is that?”
After I finished my formal treatment, so many of my inner circle of friends encouraged me to publish my diary basically, and that’s what I set out to do. I hired a writing coach because I was trained as a journalist to report facts, to report what people tell me. It was beyond anything I’d ever been trained to do to insert my own opinion into anything. That’s not what we were trained in the 1980s to do. I hired someone to help me learn how to tell a story. She taught me a lot about, “You experienced this part of the treatment in this way, what impacted you in such a way that you experienced it in this manner?” “It was something from my childhood.” I’ll give a quick example. I always hated the color pink my whole life. I’m a girly girl to some degree, but I’ve hung out in a man’s world. I’m usually the only woman on a Board of Directors or whatever. That has happened to me a lot. I’ve gotten used to it.
The whole breast cancer pink campaign is wonderful because it brings incredible attention because one in seven or one in eight women are going to deal with this in their lifetime. I’m an anomaly. It made me nauseous. Don’t send me anything pink, no pink ribbons, and so my friends joked and laughed about it. Someone once said “We assume you hate pink because you had breast cancer.” I go, “No, it’s because when I was four or five years old, I had a very weak stomach and I would always get sick in an inappropriate locations and so my mother would yell at me and I can’t help myself. I can’t move.
I’m frozen, but she would always make me take Pepto-Bismol after getting sick in an inappropriate location. It was my punishment.” I hadn’t ever put two and two together until I had time over ten months of feeling horrible and worrying whether I would ever feel good again to reflect and ponder on some of these things and then the journaling. I discovered so much about myself and why I do the things that I do, why I’m passionate about the things that I am, and why some stuff doesn’t even bother me. I did a lot of forgiving of people in my life. I did a lot of emotional purging and I emerged a much more grateful, happy, joyous person.
I was thinking as you were talking, we’re at the end in December, you’re treatments are done, and I presume then there’s a PET scan or something that says you’re done and we don’t have to do anymore. Then I think about what’s going through your mind? You’ve been through this crucible, you were on the other side of treatment, you’re coming into the holiday season, what was going on in your mind?
I was so grateful. I grew up in Central Nebraska, so we went back to visit my family. Most of my family hadn’t seen me. My hair was about an inch long, so it was still post-chemo hair but it wasn’t freakish.
You did lose your hair?
I did. I shaved my head before the hair fell out because I needed to be in control. My hair was halfway down my back. I had spent $200 every six weeks to have my hair colored and cut and I’d done that for years and that’s why I was like, “This sucks” because I’ve spent so much money on all this hair and now it’s on the floor, but “I’m going to save probably about $1,000 this year.” There are many great stories about losing your hair because who knows hair has a function? It really does. The whole symbolism of being raw and naked and the stares, that whole humiliation was part of my process. Bob, you’re an ex-military man, but I had to be completely stripped naked and beat down in order to be built back up again and that’s what this process did for me. Back to your question about December, it was so good to see everybody and it was so great for people. I could tell that they were comforted because I was starting to look healthy again and I wasn’t scary. This is frightening. It’s frightening to be next to someone who has cancer. I know that. I gave a lot of extra long hugs, I saw a lot of family that I hadn’t seen in a long time.
I have another quick, funny story. I have this sick, sarcastic side and I wanted to make light of what I had been through and so I decided to do this epic Christmas card. I had a dear friend, she is a retired Master Sergeant in the Air Force. She’s an incredible photographer. She came over and took pictures of my husband, Rene, and me in Annie Leibovitz black and white. She shot a headshot of him and me and my eyes were closed and I’m snuggled up next close to him and he’s looking at the camera with this determined big and I have a faint smile and my eyes are closed like “I am so glad this year’s over.” The photo alone brought people to tears but then I had to add a sarcastic remark at the bottom and I said, “Here’s to fewer bad hair days in 2016. Love, Diane and Rene.” Most of our friends were mortified that I would make fun of myself like that, but I needed to get past this. Humor was my way of saying, “I survived treatment.” For me it wasn’t just surviving cancer, it’s surviving treatment.
The treatment, they do their level best to kill you.
Chemo was definitely the hardest part for me because I have that princess stomach with the Pepto-Bismol and everything, but there were other people who were like, “Chemo, are you kidding? This is a breeze.” I went through times when I was down on myself because I’m weak and I’m not thriving through cancer like everybody else seems to be. I was in an open infusion room which has its pros and cons, I’ll put it that way. I captured a lot of those conversations also in my book.
Basically, there’s an IV pole and the bag of your custom cocktail?
The La-Z-Boy lounge chair.
You were there for?
For the Adriamycin and Cytoxan, that was a three-hour infusion. Adriamycin which they call the red devil is red because it’s so toxic and you can see my port scar. It’s a little indentation, my little badge of courage.
That’s where they poured in all the chemo?
They would go in with a port needle before every infusion. You have a lidocaine numbing cream that you put over the port area an hour before your infusion starts and then they go in with this thick needle and they poke it through the skin and into that port. It’s a plastic that looks like the shape of a quarter. They hook up all the lines to that and then you watch all of this poison flow into your body and you don’t feel a thing. That’s the thing is only you 6 to 24 hours later does it start to hit you. This Adriamycin, the red devil, is so toxic that if it should spill onto your skin, it will fry your skin. The infusion nurses would come in full chem gear and the first time they walked in, I thought, “This is going straight in me.”
My father-in-law who was from Salem, New Hampshire, I was so sick after my first chemo, and he called to check on me and he goes, “Why are you so sick?” I said, “These drugs are literally eating away at the lining of my stomach.” He goes, “What are you talking about?” “This is poisonous.” “Why are they treating you with the poison?” and I said “That’s what chemotherapy is.” Somebody got paid a significant amount of money to come up with a gentler term that means a poison injection. He goes, “Why would they do that?” and I said, “That’s how we treat cancer, Pop.”
I don’t mean to make light of this because it’s a serious thing, but my way of dealing with this was to go back and say, “Let’s talk about this. It’s a trip.” My experience with anyone who’d had cancer didn’t want to ever talk about it and I had all these questions of, “What did it feel like?” I talked to other survivors before chemo started and I would ask them, “What should I expect?” They would give little hints. “Don’t burn candles. You’re going to be sensitive to smells,” which I was. Then I said, “What did it feel like?” They go, “I don’t remember. I chose to forget.” I respected that, but I was such a Type A. I needed to know.
People can try to give you good advice, but I finally realized that I had to experience this in my own way.
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I think about that and it’s a way to put it as a businessperson, you can frame it. As a data person, there’s difference between data and intel. We chat a little bit before and you said, “I’ve got the book draft Year One versus book draft Year Two.
The book has changed. I was very descriptive in the first version of this book and then as time went on and I got busy again with work and business interests, and I’m two and a half years out from the day that I received the diagnosis. Now, I’m able to separate all the emotion and the pain and the nausea and I look at it and I’m like, “Some of this is so inefficient, some of the processes. We can improve on this.” The book now is part memoir. It’s a year in the life.
It’s very descriptive about what it was like for me to have experienced my first chemo infusion and not take the anti-nausea drug. I was sick as a dog. That was the most idiotic decision I ever made, but I thought it was a steroid that was going to make me fat and I admit all these things. It’s embarrassing. Listen to your doctors. I’m lucky I survived that. I was like you see in the movies back in the old days where you’re running to the bathroom. That’s exactly what it’s like. Halfway through chemo, I had finished the Adriamycin and Cytoxan. I had four of those infusions.
How far apart are those?
Those were every other week and I can only have Adriamycin once in my lifetime because it’s so hard on your heart. I had echocardiograms in between. They keep a close eye on you, but then I switched over to Taxol for the last twelve infusions. It was right after I started Taxol that I had done something also not very smart, which was to have acupuncture to try to help quell the nausea. I thought, “How harmless can acupuncture be?” As it turns out, we had a rainy spring and winter when I was going through all of this and so my inner ears were inflamed.
One night I was lying in bed, it was the night before my second Taxol infusion and I flipped over and all of a sudden I saw eight television screens. That was my vision. My eyes were closed and I opened my eyes and it was the same thing. They started spinning counterclockwise fast and I laid back on my back and I watched and those screens eventually came to a halt and I got my vision back and I’m like, “What the hell was that?” I thought it was something chemo or the cancer had spread. I laid there, I got up, I came back to bed, I woke up my husband and he goes, “What’s wrong?” I said, “I don’t know. There’s something weird going on,” and then I had to get sick and I ran to the bathroom and it was worse than any of the post chemo sick. I was hanging on for dear life.
What it turned out to be was a horrific bout of vertigo. There’s a crystal in your inner ear that controls your balance and my brain was thinking that I was spinning. I can’t even ever describe what that feeling is like to not have your balance. I kept getting sick and sick and sick and I couldn’t stop spinning and so we called the doctor and they said, “Get her to the emergency room.” It was [3:30] in the morning. I didn’t want to wake up the neighbors because they all knew I had cancer and I didn’t want them to think I was dying. It took an hour to get dressed and to have enough moments of stability to walk to the car in the garage. I checked in at the ER and they gave me Valium to finally stop my heart because my heart was about ready to beat out of my chest.
I had a brain MRI again and they walked in and after six hours of that and said, “We can’t do anything more for you. You had a whopper bout of vertigo. Take over the counter motion sickness pills and some anti-nausea drugs and we’re going to check you out and send you home.” Once again, vertigo had nothing to do with cancer but it was likely the acupuncture that I’d had. I had a few treatments of acupuncture before for aches and pains and stuff, but there were energy jolts shooting through my body. I was having horrific headaches and I thought, “What have I done?” and then I had this vertigo.
Who knows, but my inner ear was inflamed. It didn’t help the situation. It probably was why I had vertigo. For the whole rest of chemo and the whole rest of that year, I had to wear flat shoes. I couldn’t wear high heels. I would have fallen over. I drove myself. I drive a fast sports car, but I had to stay in the same lane because I was afraid to turn my head because I thought it would trigger vertigo. It had nothing to do with cancer. You talk about being tested and finding out what you’re made of.
You strike me as a bit of a control person and I think about when you don’t have control and there’s nothing you can do about it and to shift toward the business aspect of that, pre-cancer you presumably had a thought process about how you look at a business, how you arrive at a decision and so on. Post cancer, post vertigo, has that changed?
It has. Before, I thought I was a really great judge of character. One of the businesses I invested in was a farm kid from Nebraska like me. It didn’t turn out so well. Now, it’s more commonsensical of, “You want an investor to write you a check so that you can figure out if whatever this is going to work or not.” Not interested in that. That’s what things like grants and SBIRs are for. I’m sorry and I hate to be that way. It’s a government grant program. To me, it’s more common sense than anything because I would try to look at all the numbers and those are made up numbers anyway. Now, I’m like, “Do I understand it? Do I think it’ll work? Is there a need? Is this something that somebody may not even care about but is going to make a whole lot of money because you can grow value quickly?”
It is much less paralysis by analysis and much more, “Do I need this? Does anybody need this? Is this your swan song and you’ve always wanted to do this because there’s some small need?” It’s hard to explain, but I’ve also gotten away from it to say, “Does it solve a problem that we humans have?” as opposed to, “Are we going to make a lot of money from doing this?” That’s my work with the psychological impact of cancer, but also is it going to help the system? Is it going to provide data that finally convinces the people in Washington or wherever to say, “We’re going to change this and this will be healthy for everybody.” I’m all about generating business cases and statistical data that proves this works.
You got involved with DU and COPE. Talk about COPE.
COPE is the Center for Oncology Psychology Excellence. Toward the end of my chemotherapy, I thought I was losing it because the cyclical nature of chemo was tough for me because I’m such a control freak. I’m like a dog. I need to have a schedule every day. The alarm goes off at [4:44]. It can’t be [4:45]. I got to have that extra minute. The thing with chemo and these were weekly Taxol infusions. I knew on Wednesday afternoon, I’d get the infusion. Thursday, I’d be hyper stoned from the steroids.
I get all kinds of stuff done and then Friday at [10:00] in the morning, I would crash into this comatose state of sleep and this is notorious. My doctor said, “You’re going to hit a brick wall” and you do. A freight train hits you, and so for the next three days, Friday, Saturday, and Sunday is all I could do to barely even function. I had to take acetaminophen to get through that. Your body is rotting inside is what it feels like. Monday, slog back to work, Tuesday you start to feel pretty good and then Wednesday, it’s time to go get shot up again.
That cyclical nature was tough for me because I knew I was going to feel lousy this weekend and I started to get depressed about that. I asked my oncologist whether she could refer me to a counselor. I think my words were, “Could you refer me to someone who has experience working with a Type A professional businesswoman, executive, whatever, all these descriptors, who needs to feel like she’s in control but is not?” and she started laughing. She said, “Diane, I understand what you’re saying. I don’t know of anyone who works individually with how to deal with all the emotions. Everything’s amplified.
All your emotions are amplified because you’re so stoned and paranoid and worried and sick and then the vertigo.” I said, “I’m a wreck. I need to get my life back in order. Can you help me?” and she said, “I don’t know of anybody who specifically is what you want, but we have a breast cancer support group here, but if you do find someone who is willing to work with you, they likely aren’t going to take health insurance.” I go, “Why so little attention is being paid to the psychological impact of cancer. Are you kidding me?” She goes, “I know. It’s a real problem. If you figure it out, please let me know.”
She gave the example that she had a breast cancer survivor patient who ten years after going through breast cancer was close to having a nervous breakdown because she was so afraid the cancer was going to recur. I asked again, “Why is there so little attention being paid to this?” and she said, “When it comes to cancer, the dollars, whether it’s government funding or philanthropy, tend to go to research to find cures.” I go, “We have to continue working towards solving the underlying problems, which is all these various kinds of cancer,” but I said, “I’m going to Geraldo on you here. What about the fact that all of this funding and all of this research has in some cases resulted in more effective treatments? In some cases people are living longer. Cancer goes into remission or whatever the right terminology is.”
She said, “Again, I don’t know, but you’re onto something.” I said, “This is crazy.” I mulled it over and thought about it and I said, “This has been such an emotionally impactful experience for me.” I’m very fascinated by it and it could be any traumatic experience which there are plenty in our lifetime. Cancer is happening to me. I had some friends at the University of Denver, some acquaintances, and they suggested that I meet with the Graduate School of Professional Psychology Dean, GSPP. This is where licensed psychologists are trained. GSPP at the University of Denver actually graduates the highest number of licensed psychologists in the whole State of Colorado.
I met the Dean and I shared my talk. I was in there, I had finished chemo but I was weak and I was having hot flashes because now I was in menopause and I had no hair and I’m telling my story to a bunch of psychologists who are there going, “Uh-oh.” The Dean, Dr. Shelly Smith-Acuña, she said, “Diane, I just love your story and what you’re saying is very true. It’s an up and coming area of interest and it’s called Health Psychology.” I go, “It’s not just obvious traumas, heart disease, all of the health stuff can cause some kind of trauma,” and she goes, “It’s something that we’re looking at here, but we have yet to offer a specialty in health psychology.” I go, “Okay.”
She suggested I meet one of her professors, Dr. Nicole Taylor-Irwin, who had a lot of experience as a clinician working with cancer patients and survivors. I met with Dr. Taylor. She was from Iowa, and I’m a farm kid from Nebraska. We bonded but we started talking about her training. I said, “How did you get your training to know the ins and outs of cancer and to know what to say and to how to help cancer patients?” She said “I got my training at the post doc level,” and I go, “Why?” She said, “Nobody is offering this kind of training at the graduate level while they’re still in school.” I said, “Why?” and she goes, “I don’t know.” I said, “Can you go find out why?” and she said, “I will.” She went and she emailed me that day and she said, “No one’s offering this at the graduate level” and I said, “This is incredible to me.”
We need to start and make sure all the practitioners are out there and trained and that is an option if you’re going to go be a licensed psychologist that you can get this specialized training in how to work with cancer.” I said, “I want to seed fund this specialty,” and so I did and it’s called the Center for Oncology Psychology Excellence or COPE. It launched in February of 2016 on my one year anniversary as a survivor and my oncologist told me I was a survivor on the day I was diagnosed. That was the anniversary of my diagnosis. The first cohort of COPE students finished their twelve-credit specialty in August of 2017. It’s up, it’s going, we’re training, we’re bringing attention. We have a COPE Clinic where we see patients there at DU.
I am fascinated by the psychological impact of cancer and again, not necessarily just as you’re going through the treatment process, but for years afterwards. I’ve met plenty of survivors who are one to two years out and they continue with this depression-like state. I’m just trying to draw attention to the fact that, again, thank goodness for all the research, the treatments in some cases are more effective for living longer, but what kind of lives are we living? Talking about the quality of life and having resources there that yes, you likely will have to pay out of pocket for, but for whatever type of illness or ailment you have, anticipatory grief counseling, and this is something I don’t wish anybody had to go through, but the fact is there’s a lot of it. There’s a lot more cancer.
We have to continue working towards solving the underlying problems, which is all these various kinds of cancer.
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One in every three women, one in every two men is going to get some form of cancer in their lifetime according to the National Institutes of Health. That’s beyond alarming. I’m trying to help bring attention to this to say, “Let’s look at a treatment plan comprehensively and let’s not dispense more pills to deal with the depression. Let’s have sit-down conversations.” Support groups are wonderful for some people, I’m not a very good support group person because I’m too busy analyzing everybody else.
When it gets to me, I’m like drooling and I don’t know. I’ve never even thought about this, but I never say anything intelligent, so I stay away from groups. Just drawing attention, bringing attention to this and to say, “Once you’ve walked out of whatever treatment room for the last time, you’re not done.” I’m still going back every four months to see my oncologist. I have graduated now. I only have to have slam-o-grams once a year. I had to have those every six months before. You don’t get to walk away and cancer is over. My line that I’m going to have trademarked is, “Cancer’s never invited and cancer never leaves.”
It’s like the aviation business, a good friend of mine said, “Taking off is optional, landing is mandatory.” I think about it as we come to a close, for the folks that are interested in your book and how would they reach out to you? How would they do that?
I’m embracing social media. Right now, I’m working about half time for an electric airplane company. We’re developing two and a four-seat electric aircraft called Sun Flyer. You can find out more about that at SunFlyer.com. I’m trained to separate myself from the business interests and I’m devoting the rest of my time to finishing this book. I’m very active on LinkedIn and as I get more time, I hope to have more help to be a Facebooker and to be more present on social media, but you can reach out, just Diane M. Simard and you can find me on LinkedIn. It is a great way to reach out to me. I’m being asked more and more to speak and this is my second chapter in my discoveries.
I’m preparing myself to move out in front and to be a voice and to bring attention to whatever you want to talk about, electric airplanes, breast cancer, the psychological impact, or in my case, cancer was a life-changing event for me and I am so much happier and fulfilled. I feel like I have a mission everyday and there’s so much to accomplish, but I do want to focus on this is not about me getting rich by selling books or giving speeches, it’s about to say, “I empathize. This is a scary, scary stuff. There’s so much of it and it’s okay. It’s okay that we all experienced this differently.” People can try to give you good advice, but I finally realized that I had to experience this in my own way and embrace it and work through it and really understand. I forced myself to dig in and dive in and say, “Why am I so emotional about this?” and get the help that I needed.
Diane, this has been fabulous.
Thank you so much.
I can’t imagine anybody in the audience that hasn’t had cancer somewhere in their family. I’ve certainly had it throughout my family’s history. I appreciate your candor and your willingness to share and in particular your advocacy for the issue.
My pleasure. I’m always happy to talk about it. Thank you so much.
About Diane Simard
When I received the dreaded phone call on February 11, 2015, I panicked, grieved, then quickly accepted the uninvited challenge. There was much to do and learn, so I became a sponge for information. A few cancer survivors I met with encouraged me to take a sabbatical from work, live on the couch and wallow in self-pity. But I couldn’t do that. I was determined to face my battle head-on.
As I began the five-month chemotherapy regimen, I was asked numerous times by medical professionals how I was faring psychologically. They encouraged me to attend breast cancer support group meetings, but I cringed at the thought of sharing my thoughts and feelings with a group of strangers. When I asked my medical oncologist whether she could refer me to a counselor who has experience working with a female executive cancer patient like me, she said mental health professionals, including licensed psychologists, typically don’t specialize in an area like cancer. If I did find someone, they likely wouldn’t accept health insurance. I couldn’t believe it, but I was too sick to care. Instead, I decided to express my feelings in a journal.
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