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.

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.

Breast Cancer Survivor: Humor was my way of saying, “I survived treatment.”

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