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Living Life With F.A.P., With Jenny Jones of “Life’s A Polyp”

Living Life With F.A.P., With Jenny Jones of "Life's A Polyp"

Living Life With F.A.P., With Jenny Jones of “Life’s A Polyp”

LEE: Good evening, Jenny. How are you? Thanks for joining me this evening.

JENNY: Thanks for having me. I’m doing pretty good.

LEE: Good. So we were just chatting before we went live and I’m trying to think: how did I first find out about Jenny? And I thought about it and it was absolutely through your blog, which we definitely want to talk about Life’s A Polyp. I love the title and I’d love to hear where you came up with that. More importantly, about you first and foremost, how’s your health right now?

JENNY: It’s doing pretty good. I have a lot of chronic nausea and pain as my biggest problems for the last year. But it’s manageable, so it’s pretty stable.

LEE: Okay. And like many folks who have had experience hereditary cancer syndrome, you were diagnosed very early with F.A.P.

JENNY: Yes, it was about when I was eight that I got diagnosed.

LEE: And was there a family history?

JENNY: Yes, my mom has it, my grandpa did, and then several of his extended family did. But I just knew of my mom and my grandfather when I was growing up.

LEE: How was that explained to you as a young child?

JENNY: You know it was kind of just something that I grew up with. My mom and my grandpa both had ostomies so it was just a part of life. I was never told that’s what might happen for me. Of course we didn’t really know that it would happen to me until I was eight or nine anyway. It was just a part of life.

LEE: And when did you wind up having the surgery?

JENNY: When I was nine. It was a year later.

LEE: Take us from how life kind of transpired growing up with an ostomy. As you got older, to be a teenager and stuff like that, was is still normal or did you run into some challenges?

JENNY: I didn’t accept it well at all. I was very angry, very bitter about it from day one. I didn’t accept it until I had the reversal done six years later. And even then it was several years after that that I had actually accepted that I had an ostomy and what life was like with one.

LEE: So then fast forward and what was the impetus for you to start writing?

JENNY: I had joined one of the Facebook F.A.P. groups and one of the administrators was asking for people who would be involved, and they suggested that I write a blog. So it kind of just started there, not really looking for anything, and it just grew.

 

LEE: How did you become such a beautiful writer? That was the first thing that struck me as I’m reading your posts—it struck me as someone who has been doing this their whole life.

JENNY: I’d have to thank my dad. I don’t know how he did it, but he taught me how to write. And it came in handy in school [Laughs]. So, it’s all him.

LEE: From a creative standpoint?

JENNY: Yeah, I don’t even know how you teach someone to write. But he taught me how to write really good papers for school, and part of that is creative writing. I’d give him my work and he’d critique it and give me feedback and we’d kind of just learn together I guess.

LEE: So many people start, or get inspired, or encouraged to start a blog. Especially for people who have been through chronic illness, (I’m a stage IV survivor) you hear it all the time: “I want to start a blog; I want to write a book.” But then it peters out after a little while. But you’ve been doing this for a number of years.

JENNY: Yeah I think it’s about three years now. I originally wanted to write a book years ago when I was in high school or college but that always seemed kind of daunting. So, I’m glad I found my way into this blog because it’s therapeutic for me and it’s a good way to reach out to other people and I think it’s—for me—probably better than a book.

LEE: You view it as an emotional outlet?

JENNY: Yes, I base every post off of something that’s gone off in my life that has inspired me at the moment, and it helps me process what I’m going through at the time too.

LEE: Yeah I noticed that you have not been hesitant to share some fairly challenging, as well as private material.

JENNY: No, sometimes I wait on the right timing for it. For instance, something that was very personal for me was my divorce and I had to wait for the right timing to put that out there just to be fair and courteous. But things with my health specifically, that’s been a part of my acceptance—to be open about it.

LEE: What kind of feedback do you get from other people about your writing?

 

JENNY: The majority of it is very good, it’s supportive. I’ve had a few people who have not been pleased. But that’s just a couple. It’s been overwhelming support, really.

LEE: Must make you feel good.

JENNY: It does. It’s nice to know that people want to read what I have to say and what I’m going through. It’s not something that I really expected when I started.

LEE: I give you a lot credit for sticking with it. It wasn’t like a blog post once a week that turned into once a month and then petered out. You’ve been very consistent. I’m sure that’s helped you build a following too.

JENNY: Yes, it has, and I try to be consistent with it. Sometimes it’s hard. I think that makes a difference too—when you are consistent with something.

LEE: So, how did you get the tie-in with the National Organization of Rare Disorders? How did that all come to be?

JENNY: I was doing research on F.A.P.—I like to do that every so often—and NORD is just one of those organizations that I fell in love with. I think that they’re an incredible organization, not just for FAP, but for all the different disorders and diseases that they represent. And so the more research I do on them and the more information they have, the more I’m in love with them. I just think they’re great.

LEE: And you know I’d be remiss—sometimes you get caught up in a conversation and you just assume everyone knows what you’re talking about—in case anyone is listening to this show and hasn’t caught any of the previous episodes where I’ve interviewed other F.A.P. survivors, tell our listeners what F.A.P. actually is.

JENNY: It’s a rare genetic disease and causes, primarily, colon cancer because of the polyps forming there. But, the polyps can develop elsewhere in the GI tract and cause other cancers. There’s other complications, such as extra teeth, tumors are a big one. It’s very widespread through the body.

LEE: And obviously it’s a genetic disorder, as evidenced by your family history.

JENNY: Yes. There are spontaneous mutations where they’re the only ones in their family that have it. But if they have children, then their children have a 50/50 chance of inheriting the disease and it goes on from there.

LEE: I see. And typically, depending on the timing, but more often than not, what’s going to end up happening is total colectomy?

JENNY: Yes, yes. Usually that ends in either a j-pouch or an ostomy, or an IRA (ileorectal anastomosis).

LEE: And yours was?

JENNY: Mine originally was supposed to be a temporary ostomy, after I had my whole colon removed. I ended up having some of my small intestine removed too. And then I ended up with a so-called permanent ostomy for six years because I didn’t think they could reverse it. And so, I had a j-pouch that died before I could ever use it. And then I ended up having a straight pull-through, ultimately.

LEE: I want to go back to your blog. As I was reading some of your posts, a few things jumped out at me. The first thing is—it’s been such a common theme on the show—you talk a lot about the importance of exercise in your life.

JENNY: Yeah I’m not very good at exercise. I go in cycles with it. But I think it makes a big difference when you’re staying active someway. If we don’t do exercise of some kind, even if it’s just gardening, something that keeps you physically active, it’s going to wear on you physically and emotionally.

LEE: So how do you feel it helps you?

JENNY: It helps to fight depression for one, and that’s a big factor with people, especially people with chronic illness. It keeps you motivated. And then, it’s kind of like with arthritis, they say keep busy, keep moving or it’s going to get worse. I think, physically, you can see that too.

LEE: What’s your exercise of choice?

JENNY: Yoga or Pilates are my favorite.

LEE: Really? Oh wow.

JENNY: Yeah, they’re not too hard on my joints, and they’re slow paced. I can’t do running; I’m not good at that. I’m not really good at lifting weights so [Laughs] I like something easy.

LEE: Sure, and there’s so many benefits from yoga. I had Jean Dicarlo-Wagner on the show last year and, I don’t know if you know Jean, but she is a certified yoga instructor and actually does some yoga lessons by phone for people who just aren’t able to get out and move. And she teaches yoga exercises you can do from a bed, or a recliner.

JENNY: I think hers are the ones I’ve seen posted in “Colontown[?]”

LEE: Yes, absolutely.

JENNY: I think that is awesome she does that.

LEE: Yeah, she’s terrific. And it’s great to hear that you’re getting the benefit from it too. The other thing I wanted to ask you about, Jenny, is recently you wrote around the theme of mental preparation, and that just really struck a chord with me for some reason. Can you talk about that?

JENNY: Well that all came about after my surgery. When I was a kid I developed PTSD. I finally went to counseling about four or five years after my surgery, and that was one thing I learned, to prepare myself mentally for what I was about to face whenever I had procedures or surgeries. I have to do it—it’s made such a big difference for me with how I cope. If I don’t get myself psyched up and ready for it, it’s a lot harder to go through those things.

LEE: So what advice would you give to someone listening to this show? We’ve all been through this, whether it’s “scanxiety”—we have a scan coming up, or a procedure coming up. What advice would you give someone else to help them get through it the way you’ve managed to?

JENNY: I think going to counseling is very important for everyone, even if you don’t realize you need it—you need it. I think it’s something that can benefit everybody no matter what they’re going through. What I learned was that mediation is a big aspect. I’m very big on mediation, especially when getting ready to go through medical things, coping with medical things.

LEE: Where did you learn mediation from?

JENNY: Through counseling. That was one of my coping techniques that my counselor taught me.

LEE: I went through the site and stumbled upon a whole section on with online shopping. I saw a lot of cool stuff. Tell us about that.

JENNY: Well, it started because I wanted to do something for rare disease day. I started with Bonfire Funds, and they helped me design my first shirt and it was very successful. We had a lot of great support and I decided I don’t want to just keep doing Bonfire Funds because they can only do three weeks at a time. I wanted to do something that was available to people year-round. So I created a Café Press shop. With that there’s all these different items; there’s five designs now. All the proceeds go to NORD  research fund.

LEE: And you designed all these items?

JENNY: Yes, I did the designs and they upload them on all the merchandise that they have available and that I selected for it. They do a great job.

LEE: So tell us, how has the shop worked for you? Has it been successful?

JENNY: It is. There’s people that buy on there. I’m always looking to add more and to get it out there more so that we can raise more funds for the research. The goal for the research fund is $33,000. So I have a lot to do [Laughs].

LEE: Well, I’ll see if we can help you out and put a link to that on our website where you can find this conversation between Jenny and I. We’ll put a link up to your blog, to the website with your shop—all of those things so that people can find it.

JENNY: It’s much appreciated.

LEE: Certainly. And tell our listeners again the name of your blog and how they can find it.

JENNY: It’s called Life’s a Polyp, and it’s at Blogspot.com/lifesapolyp

LEE: Blogspot.com/lifesapolyp.

JENNY: Yes.

LEE: We’ve got it, and I encourage everybody to check it out. Not only has Jenny done a great job chronicling her journey over the last few years, I just truly admire—like I said earlier—that it’s beautifully written. And I think a lot of the stories that you’ve shared will resonate with many people, as it already has.

JENNY: Thank you very much.

LEE: So, Jenny, as we wrap up, I always like to ask my guests for some words of advice for people—and it doesn’t just have to be for people with F.A.P. —but for people who are just facing a major challenge like you have been dealing with for so long, people who may be facing a tough time dealing with everything. What advice would you give on top of what you’ve already shared?

 

JENNY: The two things I always focus on, and I have to remind myself even to this day, is that—number one—I am not alone. There’s always someone out there who’s going through what you’re going through. Someone can always relate to you and there’s so many people who are willing to listen. And second, you can get through this. Today may be horrible, and tomorrow might be horrible too, but that doesn’t mean the next day will be. Things always change and they can change for the better.

LEE: Great words of advice. I’m sure they will be appreciated by many people. Well, Jenny, thanks so much for spending a little time with me this evening. I wish you good health and I hope some of those challenges that you’re dealing with now ease up a bit for you. Continue sharing your story, because I know that there’s people who need to hear and find comfort in what you’re sharing on your blog. I meant to ask you too: where can people find you via social media?

JENNY: I’m on Facebook and Twitter—both of those are Life’s a Polyp.

 

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