EP 2 Diane's Breast Cancer Experience Part 2

Host Diane M. Simard shares the second half of her story about the foundational reason for the Unlikely Gifts Podcast and the driver for her advocacy work.  She explores the effects of cancer treatment and the basis for emotional trauma that often results, and the impactful ways she overcome her own breast cancer-induced depression and anxiety. 

Personal website:  https://www.dianemsimard.com/
Facebook:  https://www.facebook.com/DianeMSimard1965
LinkedIn (Personal):  https://www.linkedin.com/in/diane-moravec-simard/ 
LinkedIn (Unlikely Gift Productions):  https://www.linkedin.com/company/81847025/admin/
Diane's book:  https://www.dianemsimard.com/book/

Larry's Sorta Fun Stories podcast:  https://podcasts.apple.com/us/podcast/larrys-sorta-fun-stories/id1612127522

Transcript

Diane M. Simard: 0:02

Hello and welcome to the Unlikely Gifts podcast. I'm your host, Diane M. Samard, and along with me is our producer and editor, Larry King.

SPEAKER_01: 0:11

Well, at least you didn't call me Ed McMahon this week. Come on. But I am happy to be with you here on the Unlikely Gifts because I'm digging more, and more unlikely gift stories come to my life as I hear about your life. So this is great.

Diane M. Simard: 0:27

Oh, thank you, Larry. Well, today we're going to continue the story about the foundational reason for our podcast, the unlikely gift in my life that's literally become the driver for all I do. And of course, that's my experience with late stage three breast cancer in 2015.

SPEAKER_01: 0:44

So when we left off last time, you'd just started chemo and you'd mentioned that you had started journaling. So what happened next?

Diane M. Simard: 0:53

Yeah, thank you. I I actually, halfway through chemo, I actually started working on both my physical and psychological healing from all this, even before I finished chemo, which was the hardest part for me. It was interesting. Because, you know, once treatment ends, many often assume that the body and mind bounce back right away from the effects of treatment and the emotional trauma. But it usually doesn't happen that way. And in and for example, studies have actually shown that the psychological trauma of cancer actually peaks around six months after formal treatment ends.

SPEAKER_01: 1:30

Now why why is that?

Diane M. Simard: 1:32

Well, uh it's because after many months of appointments and treatments and daily support with cards and letters and emails and texts, all coming from those who care about you, all that attention typically comes to an abrupt stop once treatment ends. And it all stops at a point when you're trying to adjust to how your body and mind have been changed by the experience. The fear of recurrence can kick in during this time and the nightmares can start. And in one study, 21% of survivors of all types of cancer who participated in the study were diagnosed with PTSD within six months of their treatment ending.

SPEAKER_01: 2:13

Well, that makes a lot of sense. I I had no idea that the psychological impact was so extreme.

Diane M. Simard: 2:22

Yeah, it surprised me too. And it and it certainly can be for some, but not all of us. And ironically, near the end of my 16 chemo infusions over five months, I had a long talk with my medical oncologist about my concern that I was cycling into depression, and that was due to the cyclic cyclical nature of chemo. In that knowing that I was gonna have an infusion on a Wednesday, I was gonna feel lousy for the next three or four days, and then by Monday I'd be feeling fine. You kind of got used to that routine. And you and I just I got depressed knowing that I was not gonna feel good. And I was so concerned that I was just never gonna feel good again. And in fact, I asked my medical oncologist for a referral to a therap a therapist who could help someone like me who uh was a business executive at the time, who I wanted to believe I was in control, but I knew that I wasn't.

SPEAKER_01: 3:16

Well, what did your oncologist say?

Diane M. Simard: 3:19

So a very surprising answer, actually. She said she did not know of any mental health counselors who specialized in cancer.

SPEAKER_01: 3:26

Oh my goodness.

Diane M. Simard: 3:28

Yeah, I was I was surprised too. She said she knew that they existed, but she just didn't know of anyone that she could refer me to. And then she said, if I did find a therapist, that health insurance likely would not cover the visits, the cost of mental therapy for cancer. And so I was so surprised because as I always say, I told her this. I said, you know, we have marriage and family counselors and we have sports psychologists, but we don't have cancer psychologists. And she said, I know they exist. She said, Calm down, it's okay. I just don't know who who they are. But be sure to check out our breast cancer support group. And I I said something really horrible to her then, and I regret it, but I said, you know, making a quilt block isn't gonna make me feel better. And I it was sarcastic, but that's just the level of frustration that I had at the time. So I became just very motivated. Like I said, I was focusing on how am I gonna bounce back from this? And I just became very motivated because of my inquisitive nature, and I started asking questions about the uh, as I say, cancer. Yeah, yeah, and and cancer's emotional scars is really what I call it.

SPEAKER_01: 4:40

And you being the business person, what could you do?

Diane M. Simard: 4:43

Exactly. And was it a deficiency? Is it this just not offered? Is it a training problem? Well, it kind of turned out it's it's a lot of a lot of different things. And I had some contacts at the University of Denver and their graduate school of professional psychology, and this is where clinical psychologists are trained. And so there's research psychologists and there's hybrid kind of research slash clinical psychologists, but these are the clinical psychologists, and they graduate with a psy D degree, PSYD degree, and they obviously work with um clients, but they were not offering any kind of behavioral health psychology training. And there was talk about it, and I met with the dean of that school, and and she said that was a specialty that she wanted to be able to offer.

SPEAKER_01: 5:34

And I said, Well, I know And no one else is offering this? You don't know of anywhere else?

Diane M. Simard: 5:39

So at the time I was told that uh no one at the graduate school level was offering this training. Those who worked in the mental health field for oncology often got their their training at what they call the post-doc level or after they received their formal training, whether they're a master's level or a doctorate level. So um I I actually worked with that school and became the founder of what was called the Center for Oncology Psychology Excellence or COPE at the University of Denver. And as of today, we launched it um actually the night before my one year anniversary as a cancer survivor. So we got to work on it even before I finished treatment and um had such a strong response that the first what they call cohort of students that took that class was around 24. And and that it was a series of four classes in the specialty called COPE, and that started in the fall of 2016. And again, I went through my cancer in 2015. And since then, to date, 170, 170 of these clinical psychology students have taken at least one of those classes there at the University of Denver.

SPEAKER_01: 6:56

So you've written the curriculum for this? It's a four-week extension course. Is that basically what it is?

Diane M. Simard: 7:04

No, actually, it's part of their regular um curriculum. It's not an online, it's all in person. It's four separate classes. And University of Denver's on the quarter quarter system as opposed to semesters, but it's four classes over four quarters, and then um they call it a specialty. And so many of those who take the classes come out and they have this emphasis or specialty in psychology oncology is what they call it, or psychosocial oncology. There are a variety of terms for it. But um again, at the time it was we were the first in the country to offer this type of education at the graduate level. So for clinical psychologists. Wow.

SPEAKER_01: 7:47

So thank you very, very much. That sounds like it's gonna be a help for all of the world. I one person what a likely gift could bring. Yeah, and such and yeah, thank you.

Diane M. Simard: 8:00

And I I did not get involved with the writing that curriculum. There's really smart professors for that. But what what I did was I started to, as I always say, become a blabbermouth about this and just get the word out that and as it turns out, uh there is there are many survivors and not just the survivors, but the caregivers, quite honestly. And then there's the the the guilt and the grief that comes with those who are not able to um, you know, to prolong life and don't survive their cancers. So there's a whole lot of elements to this process of dealing with cancer. So um, you know, I'm I'm sure you can imagine that if you look at COVID and what COVID has done to the need for increased mental health services, that that that that is something that is also um helping, in my opinion, the conversation.

SPEAKER_01: 8:50

Um the COVID had that the mental health side will take advantage of with cancer?

Diane M. Simard: 8:58

I sure hope so, Larry. It's it there's such a great need for it. And I honestly believe that um I I always say that the brain is part of the body, and uh any traumatic experience, uh, as I mentioned, there are those who experience cancer that uh end up having a uh a PTSD diagnosis. That's amazing. Yeah, yeah, it's so traumatizing. And some of those are able to um heal from that, some are not. And and so I believe it's it's there's research now that's showing that paying more attention to the mental health needs of those who are experiencing cancer experiencing cancers can have a positive impact on their body's ability to heal, on the physical outcome of this. So it it really, really is important. It's becoming a higher priority. And so I've um part of my advocacy and the reason for the party the podcast is I've become a self-proclaimed, if you will, psycho oncology influencer. And and what I do is I advocate for more resources and attention to be given to the psychological trauma that cancer causes.

SPEAKER_01: 10:09

Well, that's just amazing. And let me guess, now now you've written a book as well, right?

Diane M. Simard: 10:15

Yeah, I did. And and of course, my cancer experience was powerful enough in itself, but along the way, I kept a journal that I mentioned before, which also is a form of release and healing and is often used as a therapy tool for cancer patients. And uh back in 2015, I was not involved and into social media, so I was sending email updates to about a hundred of our friends and family, keeping them updated. Uh, and there are wonderful portals and and websites and and other tools that you can use, but I was just sending private emails out to uh to our circle of friends, and they knew that I was journaling and and the way that I described um sort of cancer from my point of view, they were very interested because they were learning a lot. And so they several of them actually encouraged me to turn my journal into a book.

SPEAKER_01: 11:09

Well, I can really identify and and definitely know that writing can be therapeutic because I've gone through a little bit of that myself. So I can attest to the fact that's a good idea. So you turned your journal into a book?

Diane M. Simard: 11:23

So I actually originally planned to publish what would have been like a chronology events of my year with cancer.

SPEAKER_01: 11:29

You're a journalist, you know how to do that.

Diane M. Simard: 11:31

Yeah, exactly. So I'm trained to report things chronologically. And um, but there were so many sub-stories and and really unique things that happened to me that I decided to write a memoir style book. And and of course, based on my year with cancer, but it really could have been the baseline could have been any traumatic experience that just happened to be uh my cancer experience. And so it's it's memoir style because it draws in back story from my youth and life leading up to cancer, and that helps explain why and how I dealt with my diagnosis the way that I did.

SPEAKER_01: 12:07

Did anybody comment about the book?

Diane M. Simard: 12:09

Well, they did, and and in fact, one reader was very was very gracious, and and she commented that my book was beautifully written, fresh, brave, honest, alternatively funny and heartbreaking, and ultimately is a triumph of the human spirit.

SPEAKER_01: 12:25

That really describes you. Your style definitely is emotional.

Diane M. Simard: 12:31

Well, I I appreciate you picking up on that because I I try to follow the philosophies of an amazing amazing poet and writer, of course, the late Dr. Maya Angelou. And one of the one of the many quotations that she said over the years before her death was was this was this quotation, which is my absolute favorite. And she said this. I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.

SPEAKER_01: 13:03

Oh, so feelings are so powerful. And that is the title of your book. You know, what is the title of your book?

Diane M. Simard: 13:12

Yeah, yeah. So the my book is called The Unlikely Gift of Breast Cancer. And it it actually has won several awards, including being named one of the best breast cancer books of all time by bookauthority.com. And right now it's available in print and ebook format, and I hope to have it in audiobook format within the next year.

SPEAKER_01: 13:34

Why don't you give us a taste of the book? You know, would you mind reading a couple of passages?

Diane M. Simard: 13:40

Oh, I'd be happy to. How about if I read a couple passages that gives you an idea of my writing style?

SPEAKER_01: 13:47

How about on page 43? I like that page right there. That would be perfect.

Diane M. Simard: 13:52

Okay. So here's a scene that illustrates how confused and distraught I was after receiving my diagnosis. I was reflecting about how sad I was after our beloved dog, Enzo, died from cancer four years prior. Early in the morning on the day after I learned I had breast cancer, I sat in the dark in our living room and watched the sun's first ray of morning light hit the top of the mountains while I held Enzo's stuffed toys in my arms and pondered my dilemma. I would forever remember the look of sadness in Enzo's eyes during his final days, letting me know he was in pain. That feeling of helplessness, of my absolute inability to help my beloved Enzo get better, was what scared me most about dying from cancer. I didn't want my husband Rini to have to experience my death the same way.

SPEAKER_01: 14:48

Oh my goodness. I feel like I'm sitting on the sofa with you, watching the sun come up.

Diane M. Simard: 14:56

Well, thank you. How about another scene? Um, and it's one of the most pivotal parts of my story. I've been anxiously awaiting for days to hear the results of my PET scan to learn whether breast cancer had spread throughout my body. I got out of the car and said hello as I held the phone to my ear and handed my keys to the valet. My surgeon commented how happy she was to finally connect. Instead of going into the restaurant, I nervously paced around the sunny patio that was covered with melting snow, dodging stacks of wrought iron patio chairs as we exchanged pleasantries, and I prepared for the worst possible news. After describing how sore I was from the biopsies, I stopped pacing, pressed the toe of my boot into a small pile of melting snow, and smushed it around. Diane, I want to let you know the results of the tests confirm what we already suspected. There are three tumors in your left breast and at least one impacted lymph node. There are no additional tumors in your brain or abdomen area. A whoosh of cool fresh air blasted over me, and I was elated as I broke into a smile. Wow, then the cancer hasn't spread me on the lymph nodes, I said. No, she said. I might live. I might actually have a chance to survive breast cancer. My lungs burst with relief. I felt like I had lifted up the piece of plastic on the magic slate of my life and erased all the junk I had itched on the plastic during my first 49 and a half years. I had been liberated.

SPEAKER_01: 16:38

Wow. That's fantastic. How long did it take you to actually write this book?

Diane M. Simard: 16:45

Well, even though I was working full-time at the time after I finished treatment, I actually wrote the first manuscript in only six months.

SPEAKER_01: 16:53

Well, that was that didn't take long. You must have been busy typing in between.

Diane M. Simard: 17:00

You know, I I was, but the the the experience of reliving my cancer, it was so powerful that I just couldn't stop writing. I just couldn't stop this process because it was so therapeutic. And then after I finished the first manuscript, I spent close to two years editing and rewriting it. And um, it finally came out in February of 2019, which was four years after my diagnosis.

SPEAKER_01: 17:24

Well, were you doing all the re-editing yourself, or did you have help? Or, you know, how do you go through that process?

Diane M. Simard: 17:31

Yeah, thank you. Um, I actually did do the the editing myself. I had a professional editor, a copy editor, edit the final, final manuscript. And of course, I self-published, so this is not a traditional publisher. And there's so many ways to get books published now. That's again another podcast episode. We can get into that. But I did um I asked many of my closest friends to read early manuscripts and provide feedback, which they did. And there was just some really helpful advice to say to talk more about what makes me who I am, and who is this character? Why do you talk about your car so much? We need we want to learn more about your husband, Reading. And so that was really great feedback. And so it it was um truly a labor of love, and it and it um it developed over those two years of editing. I thought it would never get done in it, and it finally did, and I'm just I'm just so happy with it.

SPEAKER_01: 18:28

Well, how can I purchase the book if I want to read the whole story?

Diane M. Simard: 18:32

Oh, thank you. So um you can just go to my website, DianeMsimar.com, to purchase either the print or the ebook version, and then you can also find it on Amazon and other major book retail retailer sites. So you can pretty it's it's not in bookstores. There's so many books now that you really have to be a very popular author to get your book in a bookstore. But you can order it, like I said, off my website or Amazon or any of the major book retailer sites, and they'll they'll get a copy for you.

SPEAKER_01: 19:03

You know, you sound like a very busy person, but if I wanted to reach you directly, if part of my story I could identify, could I call you or get a hold of you somehow directly? Because this is so personal.

Diane M. Simard: 19:18

It is, and and absolutely I love to hear other people's stories, especially those who've read my book or follow my blog. The best way to reach out to me is again to go to the contact tab on my website, DianeMSMR.com. And then for those who do purchase my book, I would absolutely be grateful for your review on either my website or on Amazon's website. And the good news is you do not have to have purchased my book from Amazon to leave a review there. You just have to be an Amazon customer.

SPEAKER_01: 19:49

But if I wanted to get a hold of you personally, is your email on your website so we can get a hold of you?

Diane M. Simard: 19:55

Yeah, absolutely. So if you if you just fill out that contact um form. On my website, that shoots an email to me and then I'll respond to you.

unknown: 20:04

Great.

SPEAKER_01: 20:04

Well, I guess that's the story of the Unlikely Gifts podcast and how it got named and got started. So this this has been a great episode.

Diane M. Simard: 20:13

Well, absolutely. And as I mentioned before, I write a monthly blog called Middle Age Moxie, where I share my observations about middle age, and I do talk about cancer sometime, but not all the time. And then I also have a monthly newsletter titled Unlikely Gifts Insider that provides information about mental health resources for cancer, upcoming events and fundraisers, and other quick bits about the writing projects I'm pursuing.

SPEAKER_01: 20:37

Well, you know, you're talking about Unlikely Gifts concept even higher levels. So are you thinking about a future book in the in the writing?

Diane M. Simard: 20:48

Well, I I actually have a lot of book ideas, and um it includes everything from a series of business philosophy books for children to a book of my short stories, uh, and also a follow-up to The Unlikely Gift of Breast Cancer, which I get asked about a lot. So all of those have actually started. I'm in the process of deciding what's going to come out next because I want to publish my next book and have it come out in 2023. So I have some big decisions to make here. Um, and I I have to tell you, I'm so grateful to have been given a second chance at living. Plus, I have so many funny and heartbreaking stories based on my life experiences, including my business experiences, that I'm determined to get them out of my memories and down on paper, as they say.

SPEAKER_01: 21:33

Talk about a real calling. You've got it.

Diane M. Simard: 21:36

Well, thank you so much. And and I know you have a similar calling with your stories as well.

SPEAKER_01: 21:42

Well, so I I've got to say my stories are not quite as deep and emotional as yours, but I like to share.

Diane M. Simard: 21:49

Well, and they're great. I really enjoy. Um, listeners, please be sure to check out Larry's own podcast, which is called Larry's Sort of Fun Stories, wherever you listen to podcasts, because he's got some really delightful stories that he shares.

SPEAKER_01: 22:04

Well, thank you. And thank you for sharing the intimate details of such a life-changing event. Thank you.

Diane M. Simard: 22:11

Absolutely. It's my pleasure. And again, I coined the phrase cancer is never invited and cancer never leaves, because the psychological trauma it creates often lasts a lifetime.

SPEAKER_01: 22:22

And would you repeat that once again? I think we should, I think we should have that on the wall or something, because that that is so uh emotional for me.

Diane M. Simard: 22:32

Yeah, thank you.

SPEAKER_01: 22:33

You do know that I am a cancer survivor as well.

Diane M. Simard: 22:36

Yes, you do know that.

SPEAKER_01: 22:38

So I'm you know, we've gone through some of these issues together.

Diane M. Simard: 22:42

Absolutely. And so I'll I'll say it again: cancer is never invited, and cancer never leaves.

SPEAKER_01: 22:51

Okay, and thanks for listening. It's my honor to be a part of this Unlikely Gifts podcast.

Diane M. Simard: 22:58

I I learned so much, and I'm so grateful to you, Larry, for all your editing and production capabilities that helps make this podcast possible and all your great stories and perspective too.

SPEAKER_01: 23:09

Thank you. It's my pleasure as always.

Diane M. Simard: 23:12

Well, before I go again, please uh connect with me on social media, on Facebook and LinkedIn, and go to my website, uh DianeMSumard.com. And as always, we appreciate your thoughts and comments about the Unlikely Gifts podcast that you can leave on our podcast page. And again, in closing, please remember to nurture your mental health and your physical health, and that there's an unlikely gift in every circumstance. I'm Diane M. Samard, and this is the Unlikely Gifts Podcast.