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Archive | November, 2016

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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Interview With Fight CRC Advocate and Volunteer Kristina Smith

kristina-smith

Interview With Fight CRC Advocate and Volunteer Kristina Smith

 Lee:                 Hi Kristina, welcome to the show. How are you doing?

Kristina:          Doing great. Thank you so much for having me.

Lee:                 Oh, it’s my pleasure. So, I didn’t get a chance to tell you how I found out about your story. I subscribe– Google offers a free service where you can put in different words and phrases and say, “Email me anytime a story pops up.” So, being the Colon Cancer Podcast, I have a thing out there, I said, “Every day, send me anything that’s found online to do with colon cancer,” and I see this TV news story about you and your story, so that’s how I found you. And then you were kind enough to come on the show and tell me about your story. So, take us back – I know you’ve had quite the journey, to say the least, but take us back– I guess it’s been a little over three years now, and how you got thrust into the world of colon cancer.

Kristina:          Alright, well over three years ago, I was getting ready to celebrate my year wedding anniversary with my husband and our three-year dating anniversary, when we were seven months pregnant, and kind of out of nowhere, some good friends had just said, “Hey, your color looks really bad.” They just saw us one night when we were all kind of getting together and – “No, really, your color looks really bad. You need to go get checked.” At the time, Joe was self-employed and we didn’t have health insurance, so we were pretty hesitant about it, but we ended up going just to have a regular, routine doctor’s appointment. Doctor asked us routine questions and then took some blood for labs and said, “I’ll call you tomorrow with those results.” And within fifteen minutes he had called my cell phone and said, “You’ve got to get your husband to the hospital immediately.” His hemoglobin levels were at 4.7 and he had explained that critical or near-death was actually at a 6, so he was below that level. He said, “I wouldn’t have even believed that you could be walking right now, had I not seen it with my own two eyes.” So, immediately, we drove a little over an hour back to the hospital, they direct admitted us, and after a couple days of blood transfusions, we had a colonoscopy done and immediately they found a tumor on Joe’s colon. The short go of it is we had a total colectomy the very next day. He did not end up having to wear a bag or anything like that, but there were many complications, not just from the initial surgery, where his wound was draining. Then we went home and something still wasn’t right, and what happened was the inner part of his wound was not healing correctly. The outer part, his skin, was fusing back together, but the inner layer of that skin wasn’t, so we had to go back in for another surgery and have that cleaned up and removed. All the while, we’re seven months pregnant, I’m very gravely ill throughout my entire pregnancy on top of this, but that’s kind of the spark of what threw us into cancer. Within less than two months, so right before we had our son, we found out that the cancer had already spread. They initially classified it as stage three, but it had already spread to his liver, and so at that point, the doctor explained anything that we did treatment-wise would simply be to prolong life. So, we were sitting, literally, at the eve of having our firstborn son and finding out that we would only be prolonging life for my husband.

Lee:                 And so how long after this diagnosis was Porter born?

Kristina:          He was born two months and one day after the very initial hospital stay when we went into that to have the blood transfusions and everything. We certainly thought that there couldn’t have been a worse time for any of this to come about, especially having a baby and expecting him. What we were very surprisingly and very happy shocked about was that we were very wrong, because he was the perfect timing of all of this and was certainly medicine that no doctor could’ve ever prescribed to any of us to get through some very, very dark and gloomy days.

Lee:                 I had a recent conversation with a colon cancer survivor – she’s actually been on my show twice, her name is Dawn Eicher – and she shared a quote, I won’t go into the whole thing. but one of the key points of this quote is that the right people show up at the right time, and it sounds like your son showed up at the right time.

Kristina:          He certainly did. Kind of to go further on that quote, the people you expect to be there aren’t always the ones that do show up.

Lee:                 That’s a whole different story, yes.

Kristina:          It is, it’s a whole different story, but she is certainly right. The exact right people that you need certainly just happen to be where they are supposed to be at the right time.

Lee:                 It’s interesting to hear you say that, because as a survivor myself and virtually every survivor that I speak to, someone once put it really well – Michael Holtz who I first talked to over a year ago, he said, “The portrait of the people in your life before cancer and the portrait of those people after isn’t going to be the same.”

Kristina:          Yes, very true statement.

Lee:                 And you found that to be true, interesting. So, one more vote that that is true. So, it was about a year later that Joe passed?

Kristina:          It was. We went through many, many different types of chemotherapy. The original had worked probably the first couple of months and we just went back and forth, back and forth with things that were working and that weren’t, but after about– he was probably about nine months – nine, ten months after his original diagnosis we went for a second opinion up in the St. Louis area and they gave us three options. We went with an experimental drug and then we were randomly selected for that chemotherapy that was an experimental drug, so it was exactly sixteen months after his original diagnosis and fourteen months after our son was born that Joe passed away. It’ll be two years in October.

Lee:                 And I hear Porter in the background. It’s okay, he’s not the first little one we’ve had in the background on the show. I was so fortunate, a year ago I interviewed a young lady named Betsy Henson and she was personally diagnosed while she was pregnant and was treated while she was pregnant and gave birth to a perfect, gorgeous little baby, and when I interviewed her I could just hear her hiccupping and cooing in the background, so it’s perfectly okay that–

Kristina:          They’re part of those cancer stories. They’ve got to be on that Colon Cancer Podcast.

Lee:                 So, it’s perfectly okay that we hear Porter in the background. I love it. So, now we fast forward and the story that I saw– well first, how did your story wind up being featured on the news out in Springfield?

Kristina:          Well, we fought a very public battle and we are not very public people, but for whatever reason, I think it goes back to that right people at the right time. I had a friend that I taught with and she said, “Hey, we gotta get people on board. You guys are not going to make this alone. We’ve gotta let people know.” We weren’t even on social media at that time. So, we kept people updated that way, it was easier, it reached masses at that point, so a lot of people in our area, southwest Missouri area, was very aware of our story, and I say that, but there were so many people around the world that were following our story and you’re just kind of like, “Oh my gosh, this is crazy how fast this information spreads.” But with that, I had gotten involved with another non-for-profit organization out of Springfield in which I met somebody who worked for a fight colorectal cancer organization. We were both connected, she mentioned, “Hey, my name’s Danielle and I am a colon cancer survivor,” and I remember just honing in on her, and this was only about two weeks before the news clip aired, and I was like, “I gotta talk to this girl.” And so we spoke and she explained who she worked for and what she did and I was like, “I have to get connected. I have to speak out – we have to fight. There’s a community out there that I need to be connected to,” because you only understand colorectal cancer if you’ve been through it yourself or personally fought that. So, she gave me her card and then the organization, I mean, it literally was just an overnight thing where I was involved and I was reaching out to people and we were all connected, and then Danielle had called and said, “We’re needing somebody on the news story and we think yours is great. It’s in the Springfield area, you’re exactly the kind of story that we want to reach mass audiences.” So, I go back to it’s God putting the right people in the right place at the right time and that’s certainly what has happened in just the last month.

Lee:                 And how much response have you received since the story aired?

Kristina:          Well, including you Lee, it’s crazy the amount of just– all the way across our country people are like, “Hey, I can relate. Hey, I know so-and-so,” and I think that is the biggest thing. The other non-for-profit organization I was involved with is called Seven Billion Ones, and the premise is that we’re all connected somehow. We all have a story that we can relate to and we need each other to lean on, support each other, be there for each other, understanding when nobody else simply can unless they’ve lived a very similar story than we have. So, being able to connect that way I think has been the greatest thing and just using a very negative to turn into a very positive outcome that we can all reach together now that we’re all involved together. So, lots of feedback. It’s kind of shocking, but it’s a good thing.

Lee:                 It is a good thing. I mean, there’s just the fact that, like you said, you’re able to take a negative and turn it into a positive, and you and I are speaking over Skype and I’m looking at you and I just see the glow in your eyes as you’re talking about being able to share your story, so it clearly has made an impact on you and I can see it right now. So, as Porter gets older, what do you want to know about why you’re doing the work that you’re doing? I’m assuming that you’ll keep doing this and eventually he’ll say, “Why are we going to this run? Why are we doing this event?” Have you thought about what you’ll tell him?

Kristina:          First and foremost, for him to never forget his dad. Ever. And obviously that’s a very emotional, raw side of this whole situation. At three years old and at fourteen months old when his dad passed away, he should have no living memory of his dad, I mean, scientifically speaking. But the bond that they did share and continue to is unreal. He tells me stuff that there’s no way he should ever know. He does stuff that there’s no way he should know and it is his dad all over. So, first and foremost to keep his dad alive, but I think that the bigger premise here is to remember that no matter what dark storm you walk through, there are so many positives along the road and in the end of the journey, too. Our darkest time of our life was certainly those sixteen months, and the most beautiful moments in my life happened in the very darkest moments in my life too, so I want him to always remember that no matter how bad something can be, you can always find love and beauty in that. And then of course, you go to the health side of it, and I always want him to know this is a part of you. The day that the surgeon came in to talk to us about our options after they had told me that Joe had cancer, he looked right at me and he said, “Boy, girl, whatever you’re pregnant with, you need to have them checked too, because 50% chance they will have it as well.” And I remember feeling like somebody had kicked me in the throat, but he’s exactly right; there is a 50% chance. And I told Joe on his deathbed, “I will never watch my son go what you’ve been through. I will be proactive. I will contact every doctor – whatever it takes to make sure that I never watch him suffer the way you do.” So, with the moral piece of it, which is first and foremost in this whole situation and as we continue to fight and be proactive and be a voice for colorectal cancer, I want him to keep his health at the forefront, and to remind others to keep that at the forefront of anything that they’re doing. And he’s three and he’s already seen a specialist and I stay in frequent contact and we’re taking all avenues to make sure that he is protect and he is safe so that if this were to ever come about, we know we have a plan of action and know exactly what to do. But you know Lee, even over health, love trumps it all, so I just want him to remember the love that has come out of all of this, for sure.

Lee:                 Well, it sounds like having you as a mom that that’s not ever going to be a possibility that that won’t happen. Good for you. Good for you. And did I understand correctly that Fight CRC is actually moving to Springfield?

Kristina:          They are. And again, I think right people at the right time, again. But they are, yes. We’re moving to Springfield, Missouri, and it really centralizes just us being right here in the hubbub, the very central part of the country, which is an amazing opportunity for me just living close to there, but really also reducing a lot of overhead cost that we had over in Washington, DC and being able to lower that cost, and then those funds are able to go out and really help patients and families that are fighting colorectal cancer.

Lee:                 Great. So, what words of advice would you have for people that may be a little hesitant to get involved, to volunteer? Here’s your chance to motivate some folks.

Kristina:          Alright. Just like your health, I would just say don’t hesitate. If it’s on your heart, it’s on your heart for a reason. And God gave us a voice and I joke and say my husband was as quite as I am talkative, but he gave me a voice for a reason, and I’m passionate and I’m fired up, and anytime that something impacts you so deeply and you feel robbed of your life, there is justice and there is a way to ensure that others never have to experience that. And with this opportunity and with Fight CRC, jump on board any way you can help and get that message out there. We do have taboo that goes along with colorectal cancer, because no one wants to talk about their bowel movements or their booty, but the truth is if we don’t, like Joe didn’t, we waited too long and the result is there’s nothing to talk about now. So, you need to talk about what you need to talk about now or you’re going to wait until it’s too late and there’s nothing to talk about. We have plenty to talk about; it’s the second most deadly cancer in the country, in the world, and it’s taken too many lives, and it’s not going to stop until we have enough people stand up, rise up together, and make a loud voice about it.

Lee:                 As we wrap up, Kristina, what other words of advice would you have for someone that’s grieving the loss, grieving that someone near to them passed away from this disease? Having been through it yourself, what words would you share with that person?

Kristina:          Grieve. Not according to anybody else, not according to any book or to any counselor or professional, but grieve how you need to grieve. So many times people want to say, “Yeah, but,” and as soon as I hear “but” I forget everything they said before that. Cry, reach out, spend quiet time, whatever you need to do for your heart to feel better. Mine personally has been to write and to journal and to write our story down. For some reason so much of that was forgotten because everything was a quick decision. But grieve how you need to grieve, and when you’re ready, not when anybody else needs you to be ready, but when you’re ready, then fight back. Find your voice again. But I don’t think my voice would even be as strong as it is today had I not taken my time to be able to just grieve. And that was a lot of sleepless nights, because there’s still a baby to take care of, but I just needed to grieve, and it didn’t look like how anybody else had described their grief or other grief that they had heard of, but it was my grief. And I’m standing here strong today ready to fight back because I was able to grieve my grief, so that would be my– not a timetable – it’s your timetable and it’s your grief and it’s all going to look different, so do what you need to do to make your heart feel pure again.

Lee:                 That’s so beautifully put and I really appreciate that. And for those who haven’t had a chance to listen, including you in this Kristina, too, if you visit The Colon Cancer Podcast.com, my interview with Tom Zuba who was the author of the book Permission to Mourn: A New Way to Do Grief, was just one of the most inspiring, thought-provoking, and compelling interviews I’ve had the pleasure to participate in, and Tom is just an amazing guy and it’s great. It was just wonderful to hear his perspective on grief, so for those of you, take Kristina’s advice, but also check out the website and listen to my interview with Tom Zuba – it was pretty special. Well, Kristina, thank you so much for spending some time with us. I just wish you nothing but great things ahead for you and for Porter. Thank you, as you said, for taking such a challenging situation and a tough situation and turning it around and looking to find a way to make a difference and inspire other people. You clearly are a shining light.

Kristina:          Well, I appreciate that. I always say I just hope that I’m making Joe proud. So, with whatever that we do, I hope I’ve got a special angel proud of us.

Lee:                 I have no doubt.

Kristina:          Thank you.

Lee:                 You take care.

 

Kristina:          You too. Thank you.

 

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Current and Emerging Colorectal Cancer Treatment Options, with Dr. Christopher Lieu, M.D.


Podcast logoAfter completing his fellowship training at University of Texas MD Anderson Cancer Center, Dr. Lieu joined the University of Colorado School of Medicine faculty as an Assistant Professor in July 2011. He trained in internal medicine at the University of Colorado, where he also served as a Chief Medical Resident. He completed his fellowship training in medical oncology at the University of Texas MD Anderson Cancer Center and served as the Chief Medical Oncology Fellow in 2010.

Dr. Lieu is a member of the Developmental Therapeutics (phase I clinical trials) and Gastrointestinal (GI) Medical Oncology Program. These comprehensive programs include multidisciplinary cancer clinics, tumor boards, and research endeavors. Dr. Lieu is interested in resistance mechanisms to targeted therapy in GI cancers, and he was awarded the Conquer Cancer Foundation Career Development Award to study targeted therapies in colorectal cancer.

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Advances in Personalized and Precision Medicine, with Dr. Jeffrey Meyerhardt, M.D., MPH


Podcast logoDr. Jeffrey Meyerhardt is the Clinical Director of the Gastrointestinal Cancer Center and Senior Physician at Dana-Farber Cancer Institute. In his research, Dr. Meyerhardt, who also is an Associate Professor of Medicine at Harvard Medical School and co-leader of the Center for Colon and Rectal Cancer at Dana-Farber/Brigham and Women’s Cancer Center, focuses primarily on the influence of diet and lifestyle on outcomes among patients with colorectal cancer (CRC). Dr. Meyerhardt is principal investigator of a national clinical trial testing celecoxib as adjunctive therapy to standard treatment for stage III CRC, and recently became co-chair of the GI Committee for the NCI cooperative group Alliance. He earned his MD from Yale School of Medicine, then completed a residency in internal medicine at Beth Israel Deaconess Medical Center and a medical oncology fellowship at Dana-Farber. He joined the Gastrointestinal Cancer Center at Dana-Farber in 2002 and the faculty at Harvard Medical School in 2002.

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Interview with Wade Hayes, country music star and Stage IV colon cancer survivor

Interview with country music star and Stage IV colon cancer survivor, Wade Hayes

Interview with country music star and Stage IV colon cancer survivor, Wade Hayes

Country music’s power has always been in its ability to reflect real life, and few artists have a stronger gift for capturing both heartache and hope than Wade Hayes. In the past few years, the singer/songwriter has navigated a complicated journey that has produced some of the most potent songs of his already impressive career. Surviving stage IV colon cancer, not just once but twice, has given Hayes a unique perspective of the fragility of life and the strength of the human spirit. Those lessons learned are embodied in the songs on Go Live Your Life.

In 2009, he released the critically acclaimed independent album, A Place to Turn Around, and continued to tour extensively until his world came to a screeching halt when he was diagnosed with stage IV colon cancer in the fall of 2011. It was a surprise to everyone, even the doctors. Because Hayes was so young, doctors initially thought the symptoms were the result of him working out too strenuously and lifting too much weight. After extensive surgery and debilitating chemotherapy, Hayes battled his way back to health only to have the cancer return in the fall of 2012.

He’s now cancer free again, and the title track of his new album was inspired by a conversation with his oncologist. “That’s a song that I’m very proud of,” he says. “When I’d gotten through cancer the second time and we were looking at my blood work, my oncologist was talking about taking my port out. A port is something they implant into either your chest or under your arm where you receive chemotherapy. My oncologist said, ‘Wade, you were stage IV and now you’re cancer free. We can take your port out. This is a big deal and I want to tell you something. I want you to go live your life.’

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Quality of Life Decisions and Palliative Care, with Dr. Manouchka Joseph, M.D.


Podcast logoManouchka Joseph is the highly motivated new Medical Director for Palliative Medicine at Banner Desert Medical Center in Mesa, Arizona. She came to Banner in 2014, and under her leadership, the Desert Palliative Medicine Department is growing. She is also a Clinical Assistant Professor for University of Arizona, where she facilitates education for Nurse Practitioners and Fellows interested in Palliative Medicine. She graduated from Faculté de Médecine et de Pharmacie Université D’état in Port-au-Prince, Haïti. She completed her residency in Internal Medicine at Flushing Hospital Medical Center in Flushing, New York and her fellowship in Hospice and palliative medicine at North-Shore LIJ Health System in Manhasset, New York. She has been in Palliative Medicine since 2011.

Palliative Medicine is a medical sub-specialty that focuses on the care for medically complex individuals who have high care needs and often spend considerable time in the hospital. Dr. Joseph was drawn towards Palliative Care in her second year of residency when she found that the critical care doctors, because of the speed of the work, did not have enough time to spend time with the patients and their families, particularly those chronically ill patients suffering from multiple comorbidities. Her desire is to help families in that crucial point in managing their health care by addressing their emotional, social, and medical needs.

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Never Too Young For Colorectal Cancer, With Abby Bott

Never Too Young For Colorectal Cancer, With Abby Bott

Never Too Young For Colorectal Cancer, With Abby Bott

In this episode, Colorectal Cancer survivor, Abby Bott, shared her interesting story with me. Here are the links to the articles she mentioned during our conversation:

The Discover Magazine article about her experimental fertility preservation procedure.

A video of Abby discussing her fertility preservation procedure.

I Have Lynch Syndrome

Lee:     Hi Abby, welcome to the show. Thanks so much for joining us. How are you?

Abby:  Hi, Lee. Thank you so much for having me. I’m doing really well.

Lee:     Oh, I’m glad to hear. Really well is what we always want to hear. You and I met briefly at Live Your Best Life 2015 in Arizona last fall and it took us this long to reconnect and get a chance to share your story, but I’m glad we’re able to have the opportunity to do that.

Abby:  Yeah, it was too briefly. There were so many great people to meet and such a short amount of time to meet everybody in, so I’m glad we’re doing this.

Lee:     I am too. So, for our listeners that may not know you and know your story, you were diagnosed so, so young. Tell us about that.

Abby:  Yeah. So, I was twenty-two when I started having symptoms and I’d just turned twenty-three. I was still in college in my last semester at U of I in Illinois and I was diagnosed with stage three rectal cancer at twenty-three.

Lee:     Goodness. Now, did you run into the trouble that so many young survivors have run into, trying to get a doctor to believe your story and understand the severity?

Abby:  I think I had a few different complications. I think I was part of the problem: I didn’t go into the doctor as early as I should have and I had a stressful semester and I thought,  okay, I have an ulcer or something. I’ve never had anything up until that point that didn’t clear up on its own, so I took my symptoms to mean, okay, something’s wrong but I don’t know exactly what, but then I had all the typical blood in stool and realized that I was losing weight and not meaning to lose that much weight, and the symptoms just started adding up. And so it took me going into the school health facility and saying, “What’s going on?” And I don’t think that they’re necessarily equipped to say you have cancer, so it took several rounds of going in to see different doctors there and then they referred me over to an actual gastroenterologist who was able to do the colonoscopy. So, it was just from the colonoscopy where the doctor came out and immediately looked horrified for me and said, “This is really bad – you need to go see an oncologist and a surgeon tomorrow for a consult.” So, once I was diagnosed, things sped up so fast, but it took myself a while to get it together enough to go see the doctor and then a few more months before I was actually having that colonoscopy.

Lee:     How did you and your family handle that news?

Abby:  Well, by that time, honestly, when I was first told “You have a large tumor,” I felt kind of relieved, just because it was like, okay, here’s your diagnosis, finally, and it just felt like let’s figure out what to do now. It was so many months of wondering what was wrong and worrying, and I was trying to go to class and finish my degree and there was just a lot of stressful factors in that time, so it was good to just know what it was and to try to move forward, even though I know that every doctor gave me the pity and horrified look of like, “This is really bad.” But for me it was relief, weirdly enough, and of course my parents were devastated and everybody was shocked. You don’t expect that at twenty-three.

Lee:     No. No. So, what was the treatment plan that was prescribed for you?

Abby:  So, I immediately had a port put in and I saw my oncologist and saw a whole lot of doctors in those first few days, and one of the people was a younger nurse practitioner, and she was not that much older than me; she was probably younger than how old I am now at the time, but she said, “We’re going to have to do chemo and radiation and if you don’t do anything to preserve your fertility, that is probably going to be lost. Is that something that you’ve thought about?” And being twenty-three, of course I hadn’t, so very quickly she referred me to a specialist who advised that I go to Northwestern in Chicago and have a– at the time it was an experimental surgery to have one ovary removed and cryo-preserved and to just go through the fertility preservation before I started the chemo and radiation.

Lee:     That’s amazing the nurse practitioner of all people, and I don’t mean that disrespectfully, but that kind of sounds like it just really came out of the blue that she would think of that. How amazing is that?

Abby:  Yeah, and I think, now looking back, I think it was because we were so close in age and she’d gone through school and she was probably on the verge of thinking about having children herself, and maybe she just felt more like, “Oh, this could be me or anybody my age,” and she was thinking about it for me, luckily, because I wouldn’t have thought of it.

Lee:     Right. So, tell us more about this. This was pretty experimental at the time, wasn’t it?

Abby:  Yeah. So, I was told that it was, like I said, an experimental surgery. I was told that it was going to be one of the first hundred people ever to do it, and the hope was that they would remove the whole ovary and put it in the freezer and they moved another one, just kind of pinned it somewhere else to try to get it out of the radiation field so it wouldn’t be affected. And that was the hope, and they had said, I think at the time – and this was in 2009, late 2009, so it’s been a number of years now, so science has definitely unfolded more, but at the time, all of this was experimental – and they told me that at the time about ten babies had been born through this, so I thought, okay, well, that sounds more promising than having no options. Because of the size of my tumor, it was like softball-sized and it was stage three rectal cancer and I’d already been having symptoms for so long, so my oncologist wanted to immediately start chemo and radiation. So, to do that, I didn’t have the amount of time that it would take to extract eggs or do any other options for fertility preservation, so this was kind of it, and since that was it and that’s the direction I was told to go when I was completely blindsided by all of this, I just followed and did what my doctor told me and said I would rather have options than no options later if I survived this. But it was a very hard decision a the time, because my parents even said, “What if waiting another week to do this surgery before you start chemo and radiation, what if that affects your life? What if you’re putting hypothetical children in front of your life now?” So, it was a really hard decision to make, but I just felt like it was the decision for me at the time, and now I’m still glad that I have options. So, one of the great things about all of this surgery and the experimental and the science part, an article just came out in Discover magazine just this week in the September issue of Discover about this cryo-preservation, and the doctor at the oncofertility at Northwestern who started it all, and then I’m featured in the article, so–

Lee:     I was just going to ask you about that. How did that come to pass that you wound up connected with this article and featured in it?

Abby:  Yeah, so, I mean it’s really cool to have seen this come from 2009 to me having surgery to now I’m in a magazine, but I also did a documentary-type patient navigation-type film for Northwestern, because there were only a handful of us who had done that surgery up until that point. So, on the oncofertility website through Northwestern, there’s a patient navigation and you can click on different videos and see testimonials, like stories of people who have done this and had options and people who have had children as a result, and so I think it’s a really good patient navigation tool. So, somebody at Northwestern connected the author from Discover magazine who wanted to do a larger article about it, so they called on me.

Lee:     Oh, and now you’re famous. [chuckles]

Abby:  And now I’m famous. [chuckles]

Lee:     So, for the listeners, I’m going to repost that video on the accompanying post with our interview at TheColonCancerPodcast.com so people can see it right from our website too. Now, if I have the story straight, at what point did you realize and was this– was the cryo-preservation before or after when you found out that you wound up needing to have a full hysterectomy?

Abby:  So, that came– well, the cryo-preservation came first. So, I was diagnosed in 2009, I had that surgery in 2009 and then I followed that up with chemo and radiation and the surgery to remove my tumor and a whole lot of other treatment and follow-up things. It wasn’t until years later in 2014 I was having some other issues, and I was twenty-three when I was diagnosed, which is strange, so it turns out that my family has Lynch Syndrome, and I didn’t actually know about my genetics before I had these symptoms, and it had just come about through my family and through the referral to genetic counselors and all of that. So, I have Lynch Syndrome and that is, as you probably know, something that gives you like an 80% chance of getting colon cancer throughout your life and something like a 60-70% chance of endometrial-type cancers. Some of my aunts and my mom had had uterine cancer, so it was due to complications and then the high risk of cancer in the future that I did have the hysterectomy years later in 2014.

Lee:     All right, just for clarification so people don’t think I’m a total idiot, obviously you couldn’t have had the preservation surgery after the hysterectomy. What I meant to say was the decision process: which came first? So, I just wanted to clarify. As I’m listening to you speak, I was like, that’s not what I meant, but I know that’s how it came out. So, yeah.

Abby:  Sorry to interpret it the wrong way.

Lee:     No, you didn’t, it was my fault; I wasn’t clear. And for listeners who are looking for more information on some of these hereditary cancer syndromes, if you go back in The Colon Cancer Podcast library, I’ve had the pleasure of interviewing Georgia Hurst and Ellen Matloff, I think that was episode ten. Georgia Hurst started her nonprofit IHaveLynchSyndrom.com and they run a terrific Facebook group called GenCSM, which stands for Genetic Social Media Facebook page, so check them out at GenCSM. And I also interviewed Dr. Travis Bray, I believe – I’m doing this from memory so I could be off, but just check The Colon Cancer Podcast website – I think it was episode seven. He is a FAP survivor and he and his wife Shawnie have a wonderful foundation and website called HCCTakesGuts.com, I think it is. I’ll post it on the website where people can get more information on these hereditary colon cancer syndromes. So, you didn’t know about Lynch until after you were diagnosed?

Abby:  I did not know I had Lynch Syndrome. I actually didn’t know filling out forms in the doctor’s office and they ask you, “Do you have a family history?” I always said no because I didn’t realize and I didn’t know that I actually really have a long family history of colon cancers especially, but then endometrial cancers as well. I don’t really know if my family knew that there was a name for it, Lynch Syndrome – I think a lot of people just thought we have a lot of cancers, but even if they did, Lynch is kind of a relatively new term in the last few decades. So, I didn’t know until my parents were with me the day after I had my colonoscopy and then I had to go to the surgeon and the oncologist the next day and I was filling out those forms again and it said, “Do you have a family history?” And I said no, and my mom was like, “Well actually, yes.” So, she knew that her brother had had cancer and her father had had cancer and it was just not one of those things that came up at family Christmas and I didn’t know. So, I’ve definitely preached to know your family medical history to other people, because now I do know and now I know how far back it goes and what Lynch Syndrome means, and its appropriate screenings and things like that now, but I didn’t know then.

Lee:     That’s funny you mention Christmas dinner, because when I interviewed Georgia Hurst and Ellen Matloff last year, they were saying that is the best time to talk about it because that’s when you have all your family together, and it’s one of the rare times in most families that you have as many family members together and it may not be what you want to talk about at the dinner table, but it is a good time to ask those questions and know about it. So, I find that kind of funny that you used that correlation there.

Abby:  Yeah. Well, I completely agree, and actually ever since my diagnosis, I’ve made a strong point to be the family advocate, and we do have those conversations now at Christmas. But, you know, my mom is one of seven children and I have a lot of cousins and with her side of the family we did only get together a couple, two, three times a year then and I just feel like now we, my many cousins who could have Lynch Syndrome, we talk about it now. The first Christmas that happened after my diagnosis, I couldn’t make it to their celebration, so I wrote up a letter, like, “Hey family members, read this at Christmas because I can’t be there to tell you to go get screened for this.”

Lee:     Good for you. Good for you.

Abby:  It started with my family, the advocacy for it, and I just worked my way out.

Lee:     Well, speaking of that, I found it so interesting in reading your story, you know, so many people are able to share, or are fortunate to share, that something good comes from this, and for you, your experience with cancer led you down a new career path. Tell us about that.

Abby:  Yeah. I mean, I think a lot of weird blessings have come out of something so terrible, but I went to school for psychology, and then in my last semester there when I was– a wrench was thrown into my whole life plan, I didn’t know anything about insurance or anything about the medical world at all, and I didn’t know anything about what I needed to know; I didn’t even know my family history. So, advocacy and knowing the medical world more has become really important to me, and sharing that knowledge with other people is really important to me now. If I can help anybody with my story, I want to. I found a nonprofit in Illinois after I was healthy enough to work, and it was called Campaign for Better Health Care, and I thought, that sounds like exactly what I want to do with my life. Of course I want to campaign for better health care. So, I started working there and they led me to the current organization that I’m at, which is a health policy and advocacy nonprofit here in D.C., and yeah, I just hope that I can help other people navigate the system better and maybe make it better from within. I’m on the other side now, so we’ll see where it goes from here.

Lee:     So, let me ask you this as we wrap up, and I know you’re one of our loyal listeners and I really appreciate that, so you know how I usually wrap up with a question that– however we want to shape it, if someone who’s listening, they were recently diagnosed or are hesitant to speak up because they’re young and they don’t think anything’s really that serious, knowing what you know now, what advice, Abby, would you give to someone in either of those situations, or even to someone who may be caring for someone who was recently diagnosed? What would you– what are your words of advice?

Abby:  So many things. I think if you can, know your family medical history, and if you are newly diagnosed or you think something is wrong, to always listen to your body. I went against my better judgment and didn’t go to the doctor as soon as I should have, and I let a lot of fear get in the way of going to the doctor – fear of what the diagnosis could be or what is my body doing, or even just like the financial cost. I was in college, so I thought going to the doctor, health insurance and all of that involved was going to be too much for me to handle, but obviously going sooner would’ve been better than waiting. So, I would just listen to your body, and as far as things like fertility preservation and all the taboo topics that maybe doctors don’t bring up, I think you should definitely bring it up and ask everything you want to ask, and if you don’t get the answers, as a different doctor and always get a second or third opinion on things that you’re not so sure about, because no doctor’s going to give you the same advice. So, just be your own advocate.

Lee:     And if someone is in that similar situation, particularly around fertility preservation, can they find you on Facebook and reach out to you for just words of advice?

Abby:  Yeah, absolutely. I’m always open to meeting new people and I would love to use my story to help anybody else, so I’m definitely out there on social media.

Lee:     You are. You are. And that’s another reason why I’m glad to have you on the show and that’s why we do this is so that people like you, Abby, can serve as an inspiration to someone else that may have just received the devastating news and all these things are running through their head, and now they get to hear your story and what you’ve done, and you can kind of be a guiding light to some of these folks, so thank you for that, and I’m glad to hear your health is good and I wish you nothing but the best, especially in that department, that it stays good. And we were just chatting before the show started and we all know how important, especially those of us who have been through the cancer journey or are still in the midst of it like I am, that birthdays are a wonderful thing, so an early– so, I think when this comes out, actually, we will have passed your birthday, so I will then go ahead and say a happy very special birthday to you. Our birthdays are a day apart, which is very cool.

Abby:  Yeah, happy birthday to you too. Thank you so much.

Lee:     Yes, and I just want to wish you all the best.

Abby:  Yeah, thank you so much.

Lee:     Thanks, Abby. Take care.

 

Abby:  You too.

 

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