Joni Carlson - Living Fully with Cancer

Joni is a long time Central Oregon resident and marketing communications professional. Chances are if you’ve been around here very long you know of her firm Max Marketing. 

I invited Joni on the show however, not to talk about marketing, but to talk about a topic that she calls Kissed by Cancer. She’s joined by her daughter and partner in the Kissed By Cancer Project – Lauren Nelson. I’m not going to steal their thunder because they can tell their story so much better directly.

Transcript

Unknown: 0:04

I remember, before mom's diagnosis, we had a family friend that went through a similar journey. And I remember them saying, Every day we wake up and we go, we get another day, we get another day and I didn't really get that at the time. And after going through this with her, it really makes you embrace every day.

Narrator: 0:24

Welcome to cascade views a discussion with Central Oregon leaders. Your host is Michael SIPE, local business and community leader Best Selling Author of the Avada principle and candidate for Oregon State Representative for House District 53, which encompasses southern Redmon, sisters tombolo, and Northern bend. The purpose of these discussions is to share the views and insights of local leaders from a variety of community sectors on a range of timely and important regional and state issues. With that now, here's your host, Michael SIPE.

Michael Sipe: 0:59

Thanks for joining us on cascade views. My name is Michael SIPE, and I'll be your host today. My guest is my friend Joni Carlson. And her daughter, Lauren. Joni, he's a longtime Central Oregon resident, and marketing communications professional. Chances are if you've been around here very long, you know of her firm Max marketing. I invited Joanie on the show, however, not to talk about marketing, but to talk about a topic that she calls kissed by cancer. She's joined by her daughter and partner in the kissed by cancer project, Laura Nelson, and I'm not going to steal their thunder because they can tell their story a whole lot better than I can. So Joanie and Lauren, welcome to the show.

Unknown: 1:44

Thank you, Mike. We're really, really excited to share our story and, and to get our message out there. And Lauren, and I started this project a little over a year ago, maybe no, not even quite that long. And it's been so exciting, so rewarding. And, again, thank you for allowing us to be able to tell our story. So

Michael Sipe: 2:11

yeah, well, you know, it's I'm super excited to have you on the show when we were having lunch, and broken top restaurant recently. You mentioned today's topic, and it's so very relevant that I knew that you just had to share with everybody but first of all, just for a little orientation. Can you each give us just a little bit of your personal and professional backgrounds so people can get to know you just a little bit.

Unknown: 2:33

Oh, absolutely. Um, we've been in band almost 20 years now and moved over here from Eugene. I've got two amazing children. Lauren being the oldest that's helping me with the project. And my son Jeff, who graduated from seven high school and is down in the San Francisco area. Working in medical sales and husband that works for first interstate bank and fabulous little puppy dog named olive. And like you said, I've been in marketing here in Central Oregon since we've moved over here for almost 20 years.

Michael Sipe: 3:13

Well, Lauren Phyllis in a little on other than being the amazing first daughter.

Unknown: 3:20

Exactly. I am daughter of the Joni Carlson. I recently moved to Scottsdale Arizona after being an Oregonian for my whole life. My husband and I decided to make our way south. And we have just a little dog and have a creative agency. And we're just kind of been soaking up the sunshine and living the new desert life down here in Arizona. So

Michael Sipe: 3:43

it's beautiful. Yeah, I went to Arizona State and grew up in northern Arizona. So I love that part of the country. So you're in for a real treat. Yes,

Unknown: 3:52

we are loving it so far. Fantastic. Well,

Michael Sipe: 3:55

I'm really glad that you're on the show today. Let's let's get on to the Kiss by cancer story. Fill us in tell us the story.

Unknown: 4:02

Well, it all started about, let's say 2017. I found a lump when sure enough it was positive. And it started off with with supposed to be just a very small tumor, breast cancer. But I elected to go ahead and just have everything removed. Do the whole you know double mastectomy, reconstruction. And during the process of the surgery, it ended up being quite bigger than we expected. Unfortunately, it had spread to 18 out of 21 lymph nodes and the tumor was actually about three centimeters. You know when all said and done after that we started radiation chemo the whole nine yards. And we thought we were doing great and live in the new cancer free life. You And nine months later it came back and went metastatic on me and spread to my bones. And so through this whole process, of course, my rock, and my, my person has been my daughter got this is gonna make me cry. Anyway, she has always been there for me. And she immediately started doing research on how to save my life and make me be here as long as possible. And we started a program that was called starving cancer by Jane McKellen, which I highly recommend the book to anybody that's going through this, and started a new diet program. And just really started to, you know, take care of myself, which, you know, for the first time being a mom, and a wife and an employer, you know, you tend to put yourself second. So we just kind of realized through this whole process, that every day is a gift. And, and I said, you know, Lauren, I'm, I'm just really not a fan of F cancer, even though we all feel that way. I, I almost feel blessed in the craziest way that I have gotten this diagnosis, because it makes me appreciate life just that much more. You can, you know, up dip along and you know, not know when your last day is, but when you given are given an expiration date, per se. I said, Well, you don't that's not me, they don't know me very well. And oh, by the way, why would I choose to have a bad day from here on out? I said, I feel almost like I've been kissed by cancer versus, you know, F cancer or whatever. So, you know, we just kind of started with that message. And I can kind of think, and through talking and things like that we we developed a personal journey for ourselves. And so Lauren, how do you feel? Yeah, so after mom was diagnosed, we essentially made a pact that we would embrace every day with positivity, because like attracts like, and we are going to go through this journey. And we, you know, every day is going to be different. But at the end of the day, we are here and we have, we are happy and we are blessed that we get another chance. I remember, before mom's diagnosis, we had a family friend that went through a similar journey. And I remember them saying, Every day we wake up and we go, we get another day, we get another day. And I didn't really get that at the time. And after going through this with her, it really makes you embrace every day. And so when mom started looking at her life a little bit differently, we, you know, went through the chemo route, we, we realized that we had to also add in other things like counselors, nutritionists, and really make this a whole mind body spirit journey. And every time we would leave these appointments that aren't covered by insurance, we would say, Oh, my goodness, thank goodness, we have access to these people. But what happens to the people that can't get access, and can't go and see the nutritionist because it's$100 an hour, or find a counselor to talk through their emotions of this journey. And so that's really what started kissed by cancer as our our viewpoint and also our just gratefulness that we could go have access to these different resources.

Michael Sipe: 8:53

Before I asked you to describe a little bit about the Kiss by Cancer Initiative. You know, what were a couple of things that you discovered in there in the early stages or the last couple of years of, of the journey that were that were really positively surprising to you. Like, what were some discoveries where you went, Wow, who knew that this was that this was available? Or that, that we needed to know this? Or, I mean, I, I don't want to put words your mouth. I don't know what, what did you learn?

Unknown: 9:26

Lauren, you answer that one. I think the first thing that I've learned is how important community is. You know, my mom is the one that has had cancer. I have not, you know, my brother hasn't thank goodness, but we're all being affected by it. And it's amazing how far along that community goes that that really needs to get around these people to support you know, my husband supports me. I support my brother my brother supports me now it's it's really a For on hands on community that is affected by this one person's experience and diagnosis. And the other thing, I think, too, is there are so many programs and so many things out there to help you. And you don't have to be, you know, yes, we're a victim, but you don't have to live the victim life. And, you know, through all the research and all the different things that the community is brought to us, and the things that we have learned is, there's a lot of support out there. But it's hard to find sometimes. And so one of the things that kids by cancer does is we do have access now to a great nutritionist, a great natural oncologist. What else but therapist, you know, things like that, that, that can really help because it is mind, body and spirit that will keep you here. And so I think that that's a big piece of it as well.

Michael Sipe: 11:06

So give us a little bit of an idea about your vision for the kiss by cancer project and in some of the things that you hope to accomplish with it.

Unknown: 11:18

Yeah, so we cancer is so expensive. I mean, whether you're paying off your co pays to go see your oncologist or you're getting chemo or whatever, it's, it is draining financially. And so, because by cancer is really set up to be able to help people afford whatever their insurance doesn't cover. And we want to be able to help them realize that help these cancer patients realize that there's so much more than just this chemo route, you have to do chemo, you know, you have to do so many other things. But cancer is really created to help financially support people to get resources that they might not otherwise have access to. Yeah, exactly. So what we did was we started very small, we created a logo, and a T shirt, and we started selling T shirts, and all the profits from the T shirts, we put into a fund and started helping women in our Central Oregon, currently, you know, with with those expenses. And so, you know, I've been in town for 20 years, I've got great friends here. And Margo from North souls, footwear, Olivia Hunter said, we'll all carry your T shirts, and I won't take profit, whatever you sell, we'll you know, put in the kitty. And then we started doing farmers market and Duchin Bo Aryan was able to carry our stuff in there too. And we created a website. So yeah, so we started just, you know, slowly building up, you know, a little business to where we can start helping the community, the, you know, the women here in town, so, yeah,

Michael Sipe: 13:12

well, that's terrific. You know, I think probably in your research, and in that whole process, you've probably discovered some myths and misconceptions that people might have about cancer can Did you find anything like that or? or another?

Unknown: 13:29

Very much so very, very much. So. It's not a death sentence. It is absolutely. To J. Cancer can be a manageable disease, as crazy as that sound when you when you are hit with that C word. And you think, Okay, this is it. I'm done. It's over. Well, there's been proven proven women, everywhere that I've lived 20 plus years. I, I laugh, I'm on this Facebook support group that are staged for metastatic breast cancer. And this one lady posted the other day and please, this, I still don't get this. But she's 22 years of living with stage four. And I instantly asked her I said, What do you do? What's your diet? What's your exercise? Because I, I am like, clean live in here. I do vegetables and juice and exercise every day. And she says, Well, my new favorite thing is gravy, cheese fries and Mountain Dew. And I'm like, and you're going 22 years. Okay, good for you. You know. So I think that's one of the things but But Lauren, I mean, tell him what you've learned. Yeah. And I think there's so much to it. But I think one of the main things is it's not just physical, you know, we go through chemo and it's, you're constantly treating this physical body but at the end of the day stress and mindset and emotions play so such a huge part in this journey. And that's why we call it Kiss by cancer because you do have to stay positive and, and, and find that that safe spot and tell your body that you're going to be okay because because there are so many great success stories, but really just keeping it low stress and finding that emotional and spiritual side is another huge component to to the physical tumor. Well, besides gravy

Michael Sipe: 15:29

lady, which is a terrific success story I met there's probably a t shirt there, I think for for gravy fries, lady, but besides her, you probably have met a couple of other women that are thriving through this. And you know, I'm not looking for any names or anything. But you have a couple of examples of, of other women who are really working their way through this very positively.

Unknown: 16:00

Yeah, I mean, there are so many stories, it's it's kind of amazing when you start peeling, you know, open the curtain of these, these positive stories by of course, the big names always come up of Joe Tippins or meet Anita Moorjani, who was dying in the hospital and, and all of a sudden her tumors magically went away. But I think, for me, my biggest success story right now is my mom. She has completely changed her lifestyle, her habits and she's going on two years of stage four, and she's thriving. I've never seen her treat her body and her mind and spirit so well. And so I think my success story has to be her. No, thank you, sis, there goes the waterworks again. Like, you know, the other ones too, is like the other day I was walking the river trail. And I have the cutest Well, my daughter has a cute puppy too. But I have this little dog named olive. And everybody stops and says, Oh my gosh, your dog is so cute. We start talking and and I ended up getting olive through the Redmond Humane Society. And she had 100 applicants honor. And at the time I got her I was very sick in bed with chemo and completely bald. And we had just put our chocolate lab down and I said, you know, I gotta have this dog. So my husband, I get down to the Humane Society, 100 applicants, but I think the bald head kind of got me, you know, stepped in the front of the line to get this little puppy. And anyway, long story short, so we were walking along and everybody asked me about this dog and I start talking to this woman. And I mentioned my story and her husband's like, tell her the story. Honey, tell her the story. Well, this lady here 18 years, she was diagnosed when she was 40 years old stage four. And it's been 18 years later, you know, she's she's still walking the River Trail living life. And I asked her, I asked her to I said, What are you doing? You know, because everybody wants to know, what's the secret? What's the secret? Huge spiritual following they, they believe in God and the spirits and all that and healthy eating exercise. But positivity is definitely always ranked right up there on top. And her and I are both balling. And I said, Well, I'm two years and she says you got this girl. And so you know, even like Lauren and I were talking earlier, women at the grocery store you'll run into and they'll say, Well, yeah, I'm stage four. And it's been five years. So I think when you get the C word, you automatically assume it's death. But it like we said before is it isn't? It isn't? Yeah, more successful negatives? For sure. There is, which is crazy to hear somebody say that, but it's true.

Michael Sipe: 18:57

Yeah, my dear friend that even this was even before all of the advances and everything. So this was 20 probably easily 25 years ago. And same same story as, as you and she's 70 years old now and doing great. It's, it's, it's it's really pretty amazing. So cool. Well listen, as we start moving toward the end of our time together, I could end up listening to these success stories all day long, but no, the outside of the C word. There's another C word that's been going around and and the last couple of years have been challenging for for very many people in our community and across the country. So if you could share a couple of encouraging thoughts for people that are going through hard times, not necessarily just cancer, but in general. I mean, what would each of you offer as a word of encouragement?

Unknown: 19:58

I think for me when I you know, start Thinking about both of the see words, I, I realize a bit of the day, it's a collective struggle, you know, we're all in this together, and you really get to make a choice of how you're going to show up for today. And, and just to remind, reminding myself that it's not just me that's fighting this there are, you know, with COVID, everybody's fighting this and with cancer, a large majority of our population has to and so just reminding myself that, that I'm not alone, and that there's this whole wide community that that is also going through this experience. And I get to choose how I show up for it. Well said, I would I would said exactly the same thing. Every day is a choice. And you have that choice to make it the best day or, or be a victim. And, you know, I don't feel good every day, but there I'm not gonna lie. This is not a fun thing to live with. But I'm still here. I'm here and I get to. I'm sitting here right now watching the sun come through the clouds. And you know, the little birds in these trees right now. And I'm just like, I'm thankful for that. I'm thankful for every minute. Good, bad and ugly, that I get to be here and enjoy this. So yeah, it's, it's it's a choice. It's a choice.

Michael Sipe: 21:21

Well, as your friend Joanie, I can testify that you are fully alive. Fully, totally alive, and it's beautiful. It's a beautiful thing. And you're beautiful, and it's really, really wonderful to be your friend. How can we support you with the Kiss by Cancer Initiative? What can people do?

Unknown: 21:43

Well, we have a website called Kiss by cancer calm, and we are in the stages right now have been coming a true nonprofit. But we love donations, we love for your support in purchasing, T shirts, sweatshirts, necklaces, we have all different kinds of things. And this is the honest truth. Every dime that we make, is going towards women here in Central Oregon. So we are we have currently helped three beautiful ladies that that are just, I believe grateful for getting a juicer gift cards to for vegetables or organic vegetables. We've helped pay for the trips to go to the Mayo Clinic. So yeah, you know, we will take a donation, but you know, please visit our website and make some purchases too, because that's kind of fun. The logo means a lot.

Michael Sipe: 22:44

Yeah. Lorna Joanie, thanks for being on the show. It's been really great. Joanie, you inspire me every time we talk. My main takeaway, though, actually was was a little nugget from from Lauren there in terms of, of the encouragement because, you know, there's cancer, there's COVID, but there's another C word and that's choice. And, and the the reference that you made to the power of choice that we have, about how we deal with with the circumstances. There's a fourth C, man, this could go on forever. No, we're gonna have to wrap this up. But, but I love that, that point about choice. It's so critical for us to to realize that no matter what happens, we have a choice how we respond so or Joanie, thanks for your time and your message today.

Unknown: 23:31

Oh, thank you so much, Mike. Have a blessed day. Thank you for having us.

Michael Sipe: 23:35

You bet. Well, listen, you can learn more about Joni and Lauren's work on cancer at kissed by cancer.com That's kissed by cancer calm. Thanks for joining us today.

Narrator: 23:49

Thanks for listening to cascade views with Michael SIPE. To find out more about Mike the upcoming election. The key issues he's focused on in his campaign to represent Central Oregon and Salem as a state representative. Visit www dot a voice for Central oregon.com that's www dot a voice for Central oregon.com You can get your own copy of Michael SIPE his best selling book the Avada principle@amazon.com. And finally, please vote in the upcoming election. Your Voice Matters