Tag Archives | Genetic testing

Diagnosed With Stage 4 Bile Duct Cancer, But Focused On Hope


Chris Lawrence was diagnosed with stage 4 Bile Duct Cancer, but focused on hope.

Chris Lawrence – WE Have Cancer

In the spring of 2016 Chris Lawrence was diagnosed with stage 4 Bile Duct cancer. While laying in his hospital bed, his father wrote “Hope Has Arrived” on the whiteboard. Thus the non-profit organization hopehasarrived.com was born.

During our conversation we discussed:

  • How Chris came to be diagnosed with stage 4 Bile Duct cancer.
  • Why he created Hope Has Arrived
  • The decision to move back to Sioux Falls, South Dakota, where he was originally from
  • How Genomic Sequencing saved his life
  • His thoughts on the future of his health
  • The future plans for Hope Has Arrived
  • The important role that his faith plays in his life
  • The positive things that he’s experienced since his diagnosis

Links Mentioned In the WE Have Cancer Podcast

WE Have Cancer Links

Hope Has Arrived – https://www.hopehasarrived.com/

Hope Has Arrived on Facebook – https://www.facebook.com/hopehasarrived/

Subscribe to the show – https://pod.link/wehavecancer

Follow WE Have Cancer on Social Media

Like our Facebook page – https://www.facebook.com/wehavecancershow/
Join our private Facebook group – https://www.facebook.com/groups/wehavecancershow/
Follow us on Twitter – https://twitter.com/wehavecancerpod
Follow us on Instagram – https://instagram.com/wehavecancerpod

Know someone touched by cancer who has an inspiring story?

Nominate a guest to appear on the podcast – https://wehavecancershow.com/guest

Email Lee

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Stage 4 Melanoma; Summers Spent Tanning Nearly Cost Her Her Life; With Becca Pendarvis

Becca and Brooklyn Pendarvis

As a teenager growing up in Kansas, Becca Pendarvis spent her summers doing everything she could to get as tan as possible. Now a mother of a sixteen year-old daughter, she has spent the last seven years dealing with Stage 4 Melanoma skin cancer.

During our conversation we discussed:

  • Why she loves living in New York City and how living there helped her cope with her cancer.
  • The common misconceptions about Skin Cancer.
  • How to use A-B-C-D-E to identify possible skin cancers.
  • The fact that she’s now N.E.D. (No Evidence of Disease) after initially being told she had 9 – 18 months to live.
  • The impact her illness had on her daughter.
  • Camp Kesem – a nationwide community that supports the children of parents affected by cancer – and how it helped her daughter.
  • Her thoughts on tanning and tanning beds.

Links Mentioned In the Show

Camp Kesem – https://campkesem.org/

Know the ABCDEs of Skin Cancer – https://www.skincancer.org/skin-cancer-information/melanoma/melanoma-warning-signs-and-images/do-you-know-your-abcdes

Follow Becca on Instagram –  https://instagram.com/beccalovesbrooklyn

Follow Becca on Twitter – https://twitter.com/beccapendarvis

WE Have Cancer Links

Subscribe to the show – https://pod.link/wehavecancer

Follow WE Have Cancer on Social Media

Like our Facebook page – https://www.facebook.com/wehavecancershow/
Join our private Facebook group – https://www.facebook.com/groups/wehavecancershow/
Follow us on Twitter – https://twitter.com/wehavecancerpod
Follow us on Instagram – https://instagram.com/wehavecancerpod

Know someone touched by cancer who has an inspiring story?

Nominate a guest to appear on the podcast – https://wehavecancershow.com/guest

Email Lee

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Our Seventeen Years With Colon Cancer and Each Other

Danielle Burgess, Mike Burgess

Our Seventeen Years With Colon Cancer and Each Other

Danielle and Mike met when they were teenagers. “We were best friends” they told me. When she was just 17, Danielle was diagnosed with Stage III colon cancer. Nine years later she again would be diagnosed with colon cancer; this time it was Stage 1.

Initial genetic testing was inconclusive. Later on she would learn she had Lynch Syndrome. On January 23rd, 2018 Danielle and Mike commemorated her 17th “cancerversary.”

Danielle currently serves as the Director of Communications for Fight CRC.

During our conversation, Danielle and Mike discussed their relationship and the joys and challenges they’ve experienced. Mike talked about being a caregiver.

During the show intro. I mentioned the upcoming Undy Run/Walk taking place in Tampa, FL. If you’d like to join my team or make a donation to my team click here.

I will be attending Podfest from February 8-10; one of the largest podcasting conferences in the world. At last year’s conference I met Bruce Langford and Chel Hamilton who I interviewed on the podcast. Bruce is the host of the Mindfulness Mode podcast. He came on The Colon Cancer Podcast to talk about how Mindfulness can help ease the stress and anxiety of cancer. Chel Hamilton is the host of the Meditation Minis Podcast. She and I discussed techniques to help alleviate scanxiety.

 

Links

Fight CRC 

Lynch Syndrome

Danielle’s Blog

Danielle on Twitter

The Colon Cancer Podcast interview with Bruce Langford discussing Mindfulness

The Colon Cancer Podcast interview with Chel Hamilton discussing scanxiety

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I Am Alive and Kickin; An Interview With Lynch Syndrome and Colon Cancer Survivor David Dubin

I Am Alive and Kickin; An Interview With Lynch Syndrome and Colon Cancer Survivor David Dubin

I Am Alive and Kickin; An Interview With Lynch Syndrome and Colon Cancer Survivor David Dubin

Dave Dubin is a 2-time colon cancer survivor and the third generation in his family with Lynch Syndrome. He founded Aliveandkickn.org with the mission “To improve the lives of individuals and families affected by Lynch Syndrome and associated cancers through research, education, and screening.”

A key component of Aliveandkickn.org is the Heroic Registry. This registry “allows patients to contribute medical information and their experiences living with Lynch Syndrome and its associated cancers to help researchers develop new treatments, understand the various Lynch genetic mutations, write medical papers and conduct further studies and clinical trials.”

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What Every Colorectal Cancer Patient Should Know, With Dr. Tim Cannon

What Every Colorectal Cancer Patient Should Know, With Dr. Tim Cannon

What Every Colorectal Cancer Patient Should Know, With Dr. Tim Cannon

Dr. Cannon is a specialty care physician board certified in medical oncology. He has a special interest in management of gastrointestinal malignancies including colorectal cancer.

Dr. Cannon is the clinical director and moderator of the weekly molecular tumor board at Inova, which matches patients with targeted therapies based on molecular diagnostics. He is very interested in national cooperative group clinical trials and is a member of the NRG colorectal and non-colorectal clinical trials committee. He is the site principal investigator for multiple clinical trials in immunotherapy.

Dr. Cannon was the chief fellow of hematology/oncology at New York University (NYU). He was voted fellow of the year at NYU during each of his last 2 years there. He received a “best doctor” award by Northern Virginia magazine in 2015.

Important Links Mentioned in the Podcast

Colon Cancer Alliance Clinical Trial Finder

National Cancer Institute Clinical Trial Finder

 

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Stephen Estrada Is The Coach of His Colorectal Cancer Treatment Team

Stephen Estrada Is The Coach of His Colorectal Cancer Treatment Team

Stephen Estrada Is The Coach of His Colorectal Cancer Treatment Team

Just over two years ago, when I was 28, I was diagnosed with stage 4 colon cancer. To say I knew nothing about cancer at that point in my life would be a gross understatement. In fact, finding out there was no stage 5 was a huge shock all on its own! How could I, an otherwise healthy 28 year old man who who exercised and ate well have end stage cancer? The answer to that came in the form of a simple blood draw. Along with my cancer diagnoses, I was also told I had a genetic condition called Lynch Syndrome. Lynch syndrome meant that I had some messed up genes that had no way to repair themselves. Because of this, I was a ticking time bomb just waiting to get cancer. In general, lynch syndrome takes away the fear of “I wonder if I will ever get cancer?” And replaces it with the fear of “WHEN will I get cancer?” The answer to that, for me, was apparently at the age of 28!

So there I was, young and in serious danger of dying quickly. I was rushed into emergency surgery to remove a large part of my colon along with the primary tumor. During the surgery, it was confirmed that the tumor not only broke through the colon wall, but had spread to my mesentery…an unlikely and dangerous place to spread. My prognosis was so grim, my surgeon out a letter on my door instructing nurses and visitors NOT to discuss my diagnoses with me.

After I recovered from my surgery, I went through six months of aggressive chemo. At the end of those six months my mesenteric tumor shrank enough to make me a candidate for something called a NanoKnife procedure. NanoKnife was explained to me as a fairly new procedure used only when tumor’s are in highly sensitive and dangerous areas. Rods would be inserted into my tumor and electromagnetic waves would be pumped through the rods. This would cause microscopic holes in the tumor’s cell, causing them to leak out all their contents, thus killing the tumor and giving me approximately 2 years of being cancer free. I understood this was not a cure, it was merely a way of treading water until another plan could be formed. I signed off on NanoKnife and my unconventional fight with cancer truly started.

The NanoKnife procedure quickly turned complicated. Once inside of me, my surgeon realized the tumor attached itself t my small intestine and gallbladder. What was supposed to be a frying of the tumor, quickly turned into something much more. I underwent a gallbladder removal, a small intestine and mesenteric resection, a stomach bypass, and an intestinal rerouting. I was told everything went beautifully and I should be cancer free. I was sent home to recovery in peace after about a week in the hospital.

Now, anyone who knows me well, knows that when I do something, I go all out. So, not only did a NOT recover peacefully, instead I started to bleed internally. An ambulance had to be called to my home in a horrible blizzard where they found me, pale, weak, and with barely a pulse. I was rushed to a local hospital where I received 8 blood transfusions in an effort to stabilize me. This resulted in a week long stay in ICU where I suffered from seizures due to a lack of blood. At this point, I was more than sure I would never leave the hospital alive.

Somehow, I made it out. I was supposed to start maintenance chemo once I was strong enough…but my quick brush with death made me reconsider everything I was being edged to know more about what was happening to me. I was so tired of not knowing anything about my cancer other than what my oncologist was briefly telling me. So I read. I read a lot. It is so important for those of us with cancer to not be afraid of information. The more we know, the more we can have an informed discussion with our team of doctors. I truly believe that the more we know about our cancer, the more doors open for us.

Self advocacy will get you far in the cancer world, through my research, I found that the maintenance chemo my oncologist wanted me on was not beneficial to those of us with lynch syndrome. In fact, the drug had been noted as detrimental in some cases. Shouldn’t my oncologist have known this? Probably. But she was my ONE oncologist…I was one of possible HUNDREDS of patients to her. How could I expect her to know all the nuances of colon cancer when she treats every cancer, every day? I knew at that moment I needed an oncologist who not only specialized in colon cancer, but lynch syndrome as well. I was o angry that my oncologist didn’t have the knowledge I thought she should have…but now I realized she was doing her best and I couldn’t rely on ANY doctor to have ALL the answers. Doctors are wonderful people, but I had to remember that they are still human. Humans with immense pressure placed on them on a day to day basis. It was then that I made the decision to learn as much as I could about lynch syndrome and MY colon cancer. I wanted to bring more to the table during appointments, I wanted to ask questions and learn, I wanted to save my own life.

My research led me to the university of Colorado, where my current oncologist, Dr. Wells Messersmith works. I met him after my NanoKnife procedure and filled him in on what was happening with me. At this point, two months after NanoKnife, I was assumed cancer free. Unfortunately, one morning, I woke up to a familiar and excruciating pain where the tumor was. A quick CT scan confirmed what I already knew: NanoKnife, my unconventional answer to the cancer trying to kill me…the procedure that was being hailed as an incredible weapon against cancer…the surgery that almost took my life…was a total and utter failure. That tumor was pissed and growing.

Little did I know that this was possibly the biggest blessing I could have asked for. Because the tumor was alive, well, and measurable, Dr. Messersmith suggest I quickly enter a phase one clinical trial with something called “immunotherapy.” A very quick google search unearthed a massive amount of articles calling immunotherapy the biggest medical breakthrough since antibiotics. I wanted in.

Once I started the immunotherapy trial, I knew something strange and good was happening inside my body. The drug, Atezolizumab, was incredibly easy to tolerate and within weeks…WEEKS…I felt well. My pain and fatigue were replaced with strength and hope. I went from a tiny 110 pounds to 130 pounds in roughly a month and a half. Whatever was happening on my inside was manifesting itself on the outside. The drug removed the blinders on my immune system that cancer had placed on it and my cancer was the number one target. And now, a year later, here I stand: healthy, alive, active, and well. My tumor is still shrinking and I live my life with cancer as an after thought.

Had I not done my own research…had I not had the courage to seek out another oncologist…I would most certainly not be alive today. So I encourage all of those with cancer to truly take the reigns and be your own life saver. Don’t wait until it’s too late to start looking at trials…please….look NOW. Save the trial number, print off the trial description, and take that information to your oncologist. Do not wait for the to present something to you….they are so busy that things fall through the cracks all the time. During these last two years I have noticed that those who do the best and live the longest tend to be those who are well informed and active in their treatment planning.

I often tell newly diagnosed patients that they are the coach of their cancer care team. Your oncologist is the quarterback, but it is up to YOU to run the team. So you have to step up and play your own role in order to win this game. You will hear a lot of “no’s” as you present information to your team…but for every 20 “no’s” there will be at least one “yes.” And sometimes, all you need is that ONE YES.

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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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Celebrating 20 Years Since He Was Diagnosed With Colon Cancer, With Kris Thompson

Kris Thompson

Celebrating 20 Years Free From Colon Cancer, With Kris Thompson

It’s been 20 years since Kris Thompson was diagnosed with Colon Cancer at the age of 18.

From his blog, Papa’s Got a Brand New Bag, here’s how Kris told his story:

“I’m going to lose my hair?!?!” Those were the first words that came out of my mouth when I learned I had cancer. My grandmother, mother and uncle all had either a partial or total colectomy due to F.A.P, and were all diagnosed at a much later age than I without any traces of cancer. With that being said, why would I even entertain the thought of cancer, I mean I was barely eighteen for Pete’s sake. Besides, what eighteen year old develops colon/colorectal cancer?

So there I was, barely eighteen years of age checking in at Johns Hopkins University Hospital for my colonoscopy. I had just walked the stage no more than a month ago to receive my high school diploma, now I’m lying on my side as nurses prepped me for my colonoscopy. I don’t remember being nervous as my grandparents and I waited for the results, as the whole experience felt surreal; I mean here I am waiting on the results of a colonoscopy at an hour no teenager should be awake, while all my friends were laying peacefully in their beds sleeping off a summer’s night of being a “normal” teenager, but I digress. It seemed like a lifetime before we received the results, and as fate would have it, not only did I have polyps, but so many in fact, that my colon was deemed unsalvageable, and in turn I would need a total colectomy. Little time was wasted as my surgery was scheduled for September 4, 1996 at the Mayo Clinic in Rochester, Minnesota, by one Dr. Roger Dozois, the same surgeon who performed my uncle’s colectomy many years earlier.

The summer flew by as they usually do, and the next thing I know I’m on a plane with my grandparents and uncle, flying from my hometown of Washington, DC to Rochester, Minnesota. We arrived two days prior to my surgery so I would be able to meet my surgeon, get marked for my temporary ileostomy, and complete the necessary paper work. Other than getting marked for my temporary ileostomy those two days prior to surgery were pretty much a blur, as the next thing that I remember is the night before surgery. After I was checked into my room the “real” preparation began. I was fed pills the size of quarters, while given enema after enema to clean out my system. Most of the night was spent in the bathroom, as my nurse was very liberal with the dispensing of the enemas, and if I wasn’t on the toilet having my life sucked out of me, I was vomiting up the lining of my digestive tract. After hours of being fed pills that could choke a horse and given enough enemas to clean out a cow, I was finally able to get some sleep before my big day.

The morning came with a knock at the door, and a nurse who greeted me with a valium to “relax” me before surgery. Moments later I was on a gurney destined for a surgery that I wasn’t prepared for. More than nervous and hardly “relaxed” my heart rate increased with each wheel rotation of the gurney, scheduled for a nonstop trip to the O.R. I had reached my final destination; it was white, bright, cold and unfamiliar. I was moved from my gurney to the operating table, and by this time I was all strapped in while having an oxygen mask was placed over my nose and mouth. “We’re going to take real good care of you Kristofer.” said the anesthesiologist, “now take a few deep breaths for me and count back from one-hundred.” “One-hundred….and that’s all she wrote, as my next memory was waking up in my hospital bed.

When I came to, I awoke to a packed hospital room, with my grandparents to the right of me, and my surgeon at the foot of my bed. My surgeon wasn’t alone as he was flanked with an entourage of white coats. I was confused enough without all these unknowns standing in my room, and before I had time to question, my surgeon walked to the side of my bed. “Kris, we found a tumor in your rectum during the surgery.” Wait! What? My mind was racing, trying to grasp the situation, and that’s when my vanity came into play. “Gramps, I’m going to lose all my hair?!?!” So after finding out I had cancer, my biggest concern was my hair, talk about priorities. Being the most caring, compassionate, empathetic and understanding man I have ever known I shouldn’t have been surprised by his response, “Kris, don’t worry, we’ll get you the best wig money can buy.” Now take a moment to realize the magnitude of my grandfather’s response. My grandfather just found out that I had cancer, and in a matter of moments he was able to process the severity of my situation, listen to my ridiculous concern, and without missing a beat, console me with what I needed to hear. Ridiculous or not, it was nothing short of amazing.

My surgeon informed me that I had stage III colorectal cancer, and with that I was given a forty percent survival rate. Listen, I am no math whiz, but if I had only a forty percent survival rate, that means I had a mortality rate of sixty percent, I was only eighteen! With the very next breath my surgeon leaned down next to me and said, “Kris, this is game seven, I need you to fight.” I was at a total loss, I didn’t know what to say, what to do, or how to feel, I was just so confused, so I did what I do best, pretend. I pretended that I was okay, and that my illness wasn’t that serious as that was the best way I knew how to deal. My psyche was just too fragile to handle the reality of the situation.

After a several months of being home, and finishing up my chemo treatment, it was time for me to go back to the Mayo Clinic for follow up testing. It would be a two day trip for my grandparents and me. The first day was spent being poked, prodded, scanned and stuck, nothing short of the usual, with instructions to follow up the next day. With my grandparents by my side, I sat silently staring at the floor waiting for the doctor to come in, and send me home with a clean bill of health. My head shot up as I heard a knock at the door, and in walked the doctor with my results. “Kris, the CT showed spots on your liver, and I would like to do a biopsy first thing in the morning.” Confused, I looked at him and said, “Doc, I can’t, our flight leaves in the morning,” then shot out my seat found an empty room down the hall and preceded cry every tear my ducts could store. Eventually I wiped the tears from my face, gathered myself the best I could, and made my way back to the doctor’s office. Once back in the room I pleaded with my grandparents as well as the doctor to let me go home as planned, and promised that I would have the biopsy done then. I was scared, I wanted out and home was my only salvation.

Once I was home there was a window of a few days before I was able to see my oncologist, and during that time I felt nothing. I couldn’t laugh, couldn’t cry and I couldn’t feel. I was completely numb, and as far I was concerned I was a dead man walking. Nothing would’ve prepared me for what I would find out the day of my appointment. When my oncologist took my grandparents and I back to his office, he had my CT results next to those of another patient. “Kris, you see those spots” he said, “They’re supposed to be there,” and pointed to the other CT scan who’s was a patient with a “healthy” liver. “That’s just the way the liver looks when scanned.” I didn’t know what to say; I was relieved, yet angry. I just spent the last few days walking around like a zombie, waiting what on what I was sure to be my imminent death. I left my oncologist’s office shaking my head, it’s not like I was told I had “spots” on my liver at some random clinic on the side of the highway, this was the Mayo Clinic, “thee” place to go for cancer treatment. Goes to show, never judge a book by its cover.

“Just when I thought I was out, they pull me back in.” It was once again time to go back to the Mayo Clinic for another follow up visit, and wouldn’t you know it, my CT results didn’t come back clean. I was told that I had a mass of what looks to be a tumor wrapped around my left ureter, which I was a little hesitant to believe considering what I was told during my last visit. Unfortunately for me there were no mistakes being made this time. I was shook to my core, didn’t know whether I was coming or going, or when, if ever this rollercoaster ride would end. The results came back from the biopsy, and thankfully the tumor was benign, but I wouldn’t get off that easy. The tumor I had was inoperable because of its location; it was also a “desmoid” tumor, common in patients with F.A.P. I was then put on a trial medication which I was told had some success with shrinking desmoid tumors, along with a referral to an urologist as the tumor was causing me bladder and kidney pain. Upon meeting with the urologist, I was informed that I would need to have a stent placed in my kidney to keep it dilated. After a few years of urine tests, sent placement, and replacements, my kidney showed that it was able to function without the stent. Oh, and the desmoid tumor? My last MRI showed no evidence of any mass around my ureter.

Fast forward to the fall of ’97, I was home recovering from my j-pouch surgery, I was feeling better, looking better and best of all living without an ileostomy, but I was about to receive the best news yet. While at the mall hanging out with my best friend my phone rang and it was my grandfather. “Kris, I just got off the phone with your doctor, and all of your latest tests have come back clean, you have no cancer in your body.” I ran out of the mall screaming “yes “at the top of my lungs, I was one year cancer free and I knew exactly how significant that was.

One year turned into two years, then five and here I sit today, almost twenty years later, free of cancer and lucky to be able to call myself a survivor. With all that being said I would be remiss to say that’s where my cancer story ended. The effects of cancer and its treatment will be with me for life as I still live with bladder and kidney pain due to what my urologist calls “radiation cystitis.” Also a few years after my j-pouch surgery I developed anal stenosis due to the radiation treatment. I was dilated a few times under anesthesia, and even had a surgery to try and rectify the situation, (no pun intended) but to no avail. The surgery left me not being able to control my bowels, and having to where a pad during the day and diaper at night. I lived this was for ten years, painting myself into a corner as my shame grew larger with each passing day. A decision needed to be made. On August 5, 2013 I decided to have surgery to receive a permanent ileostomy, and not only is it not nearly as bad as I remembered, my ostomy has given me my life back. Chalk my new found acceptance up to age, maturity or simply just knowing things could always be worse.

Cancer did a number on both my mind and body, but through it all I am still here. I’ve said it before, and I’ll say it again, it’s not our afflictions that define us, but how we choose to deal with them.

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Choosing to Lead a Positive Life With AFAP, With Daniel Shockley

Daniel Shockley

Choosing a Positive Life With AFAP, With Daniel Shockley

Daniel Shockley is a veteran of the U.S. Navy. At the age of 50 he was diagnosed with AFAP, Attenuated Familial Adenomatous Polyposis. AFAP is a subtype of a condition known as Familial Adenomatous Polyposis (FAP), which causes an increased number of colon polyps, and therefore, an increased risk of colon cancer in the people who have it.

Though faced with life saving and life-altering surgery, Daniel has chosen to live a positive life.

My mindset from the onset can best be described as: I tend not to think about things I am unable to control; medical issues I am unable to control. What I can control is my positive attitude – Daniel Shockley

What I Learned From Daniel Shockley

  •  Understand as much as you can about your condition

    • Understanding your condition will help you adapt and will allow you to press on with your life.

  • Worrying doesn’t help.

    • In Daniel’s words “worrying didn’t cause my condition;  therefore,worrying will not make it go away.”

Daniel has made advocacy his life’s work. Here are the organizations that Daniel is working with:

The Colon Cancer Alliance

Fight Colorectal Cancer

Hereditary Colon Cancer Foundation

National Organization of Rare Disorders

Wound, Ostomy and Continence Nurse Society

United Ostomy Associations of America, Inc.

Chris4Life

Michael’s Mission

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Lynch Syndrome, and Genetic Testing and Counseling, With Georgia Hurst and Ellen Matloff

Georgia Hurst1

I Have Lynch Syndrome, Inc founder, Georgia Hurst

Georgia Hurst is the founder of I Have Lynch Syndrome, Inc. As stated on her website

The mission of I Have Lynch Syndrome, Inc., is to save lives through education and awareness raising about Lynch among the global medical community and the general public.

Ellen Matloff is the President and CEO of My Gene Counsel.   “My Gene Counsel will translate the jargon behind the latest breakthrough on the evening news and tell you what it really means for you and your family.”

During this podcast, Georgia and Ellen discuss the impact that Lynch syndrome can have on those affected by it and the importance of knowing your family medical history. The also educate us on the world of genetic testing and counseling.

What I Learned From Georgia Hurst and Ellen Matloff

  • Know your family medical history!

    • Speak with the older members of your family and create a family tree that lists as many family members as possible. List their age, any serious medical condition, and their age when they passed away, if applicable. Keep this document with other important documents.

  • If you have a tumor surgically removed, ask your doctor to order M.S.I. (Micro Satellite Instability) or immunohistochemistry testing on the tumor to determine if there are any genetic mutations.

  • Though not right for all cases, genetic testing should always be discussed with your oncologist. If you need assistance, or more information, visit the National Society of Genetic Counselors website, or contact My Gene Counsel.

Important Links:

IHaveLynchSyndrome.com:

IHLS

Find Georgia Hurst on Twitter: @SheWithLynch

My Gene Counsel

Find Ellen Hurst on Twitter: @MyGeneCounsel

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