Archive | September, 2016

“Cologuard Saved My Life,” With Dot O’Shea

Cologuard Saved MY Life, With Dot O'Shea

Cologuard Saved MY Life, With Dot O’Shea

Lee: Hi, Dot, welcome to the show, thank you so much for joining me. How are you?

Dot O’Shea: I am well, Lee, thank you for having me.

Lee: I feel like I’m talking to a TV star.

Dot O’Shea: Oh, shucks. I’m blushing.

Lee: So, for those, I think a lot of people who are listening once we make the connection, they’ll go oh, so for those who are very involved in the colon cancer community, how long ago was the NBC news story?

Dot O’Shea: Two months, I think.

Lee: Yeah, I was going to say two, three months ago. So, we knew that NBC Nightly News was going to be doing a story on Cologuard, and I made a point of stopping what I was doing to watch it, and then when you and I got introduced, and I saw the clip, I’m like, I remember her. She was the start of that story. So, tell us, first off, your backstory and how this all came to be. How you came to be diagnosed with stage one colon cancer

Dot O’Shea: Alright, so last August, I turned fifty. When I went for my physical to my general practitioner in September, she told me I needed to go for a colonoscopy, because hey, what’s better to do when you turn fifty than go for a colonoscopy. I was resistant, and I had seen a pamphlet for something called Cologuard in the waiting room. I asked her if I could do that instead and she said no, you need to go for a colonoscopy. Handed me a list of doctors, and I went on my merry way. Well, I’m fifty years old, so that puts me at risk, but I’m also a very active female. I’m very fit, I’m not overweight, I’ve been a vegetarian for 30 years, I quit smoking fifteen years ago, my only risk factor for colon cancer is my age. I decided that you know, maybe if I spoke to one of the gastroenterologists that she had given me the name of, perhaps we could work something else out. Like I said, not going for the colonoscopy, but I have a friend who had been diagnosed with colon cancer in June. He kept pushing me, pushing me, pushing me. So, I went to see a gastroenterologist and asked him about my screening options. I told him flat out that I wasn’t going to do a colonoscopy. He said, well there’s this test, there’s that test, and there’s this new DNA test called Cologuard. I think you’d be a perfect candidate for it, because, you know, you’re at a very low risk of having colon cancer. I think he told me my lifetime risk of getting colon cancer was only 4%. He prescribed the test to me, and a couple of weeks later I got a kit in the mail, followed the instructions, shipped the kit off, and about a week or two after that, my doctor called me and told me that my fancy DNA kit came back positive. At that point he’s like, like I said, your lifetime risk of getting colon cancer is only 4% but I think after this positive result, it’s a really good idea for you to come in for the colonoscopy. So I scheduled it for January. I wanted to get through the holiday season without that on my mind. I went in in January, I had a colonoscopy, and he told me that they found a tumor. The next week was kind of a blur. I had the colonoscopy on a Monday, I went back in for a CAT scan on Wednesday, which is when he told me officially that I had colon cancer. I met with a surgeon that afternoon. I had to go in for a sigmoidoscopy on a Thursday because the tumor was so small that it didn’t show on the CAT scan, so I got my first tattoo that day so the surgeon could find the tumor when he did the surgery. Friday, I had pretty much the day off, I went in for a consult with the surgeon, we were going to do the surgery the next Friday. I got home that afternoon, the surgeon’s office called me, told me they had a cancellation on Tuesday, would I like to come in for my surgery then? So, I did. So, I had a laparoscopic ball resection, where they took out my sigmoid colon. I was in the hospital for about two days after that. Now I’m a six month survivor.

Lee: Congratulations.

Dot O’Shea: Thank you.

Lee: That’s the word we all want to hear. So, a vegetarian for thirty years, quit smoking fifteen years ago, what was your reaction when you heard those words, “you have cancer?”

Dot O’Shea: I was pretty stunned. On top of everything else, I’m the first person in my family with colon cancer. It was just really amazing to me, but on the bright side, I had a friend who kept pushing me to get screened, I did get screened when I was fifty, and they caught it wicked early.

Lee: So it was staged at what?

Dot O’Shea: Stage 1-A. As my oncologist says, if you’re going to have cancer, that’s the kind you want.

Lee: What was the treatment that was prescribed for you?

Dot O’Shea: Surgery.

Lee: Just the surgery?

Dot O’Shea: Just the surgery.

Lee: You’re one of the lucky ones.

Dot O’Shea: Yeah, yeah, because, I mean my surgeon was awesome. He took out seventeen lymph nodes and all of them came back negative.

Lee: So you really were caught early. Wow.

Dot O’Shea: Yes.

Lee: So, what did you have to say to your buddy John after all this?

Dot O’Shea: Thank you for being my guardian angel and saving my life. He tears up every time I say that though, so I try not to say it too often.

Lee: Oh, okay. So, let’s go back a little bit. What was the motivating factor for you to become a vegetarian when you were younger?

Dot O’Shea: Well back in, I think it was the 1980’s there was this show on called 20/20, and they were always doing these exposes. They did one on the meat industry, and they showed a slaughterhouse and how not to be gross but how they were slaughtering the cows, and they’d slit open the stomach and all the fecal matter would go all over everything, and how the meat you buy in the grocery could be contaminated, so I stopped eating beef. Then they did one on chicken where they were cutting tumors off the chickens and packaging them for sale so I’m like okay, no more chicken. Then, I developed a shellfish allergy so fish was pretty much out of the question. That’s how I became a vegetarian.

Lee: It took you another fifteen years to give up smoking.

Dot O’Shea: It did. I don’t know if you’ve ever smoked, anyone listening, who is a smoker or former smoker will be familiar with going to the doctor, and the doctor will tell you oh, you need to quit smoking, you’re going to get cancer, you’re going to get heart disease, you’re going to get this, you’re going to get that. You just kind of tune it out, and I switched doctors about fifteen years ago, and for the first time I went to see her, we talked about smoking. She’s like listen, I know it’s really hard to quit, but if you want to, I can help you; that just made me think. Wow, she didn’t lecture me; she’s offering me her assistance to quit. About a month after that, I went in and we discussed it. She gave me a prescription for; I think it was called Wellbutrin. I took that for a couple of months, I quit smoking, and I haven’t looked back since.

Lee: Congratulations.

Dot O’Shea: Thank you.

Lee: Let me back up. How were you the one chosen to be the face of Cologuard on this NBC Nightly News story?

Dot O’Shea: Well, on the NBC one, I’m on Facebook, and I follow the Colon Cancer Alliance Facebook Page. They had posted something about Cologuard, I left them feedback saying that it pretty much saved my life. I was diagnosed with stage one, I had successful surgery, and that was it. A couple of days after that, they reached out to me and said we’re looking for someone to speak to the media, if you’re willing, contact this person. So I reached out to them, someone from NBC contacted me after that and that’s how I ended up on NBC Nightly News.

Lee: Were you nervous?

Dot O’Shea: A little bit. I had done a spot previously for one of our local news stations up here in Boston. So, I was kind of used to the whole tv thing, but it was funny getting some feedback. You know, people that I knew previously who’ve moved all over the country, I think the furthest one away was in California. They said hey, I saw you on TV.

Lee: I guess I should direct my comment to our listeners. No story goes more than two or three minutes. I imagine it was a whole lot longer than two or three minutes of shooting and putting this all together. What was that like?

Dot O’Shea: They got here at 5:30 in the morning. They did some outside shots of the neighborhood and stuff, and they came into the house at 6:00, and they left at 10:00. So, they were filming pretty much for four and a half hours.

Lee: For about 60-90 seconds of TV airtime, wow.

Dot O’Shea: Yes.

Lee: One of the things that I thought was so inspiring, and those who follow The Colon Cancer Podcast know from my own personal journey how much of an advocate I am for exercise. There was a wonderful shot of you running down the street, and it appears that was not your first run, that you’ve been doing this for some time.

Dot O’Shea: I have. I really started getting into running when I was about 48 or 49. I mean, I used to walk, everywhere. A friend of mine asked me to sign up for an obstacle race with her. It was called the Diva Dash, it’s not one of those Tough Runners or Spartans or anything that extreme. I did it, and I just got a great deal of satisfaction out of it, especially like climbing over the pile of tires and stuff. It’s something I’ve never done before, and I’m like, wow, I’m actually capable of this. It was just such a feeling of empowerment.

Lee: How much of a break did you have to take during your treatment before you were able to start exercising again?

Dot O’Shea: My doctor cleared me for exercise about six weeks after the surgery, which was about two weeks after I went back to work. It’s funny, I got on a treadmill at the gym, and I’m like, well my warm up speed is three miles an hour. I’ll just walk at that. My first time on it, I got on, I set it at three miles an hour, and I’m like, you know what? This seems a little fast. Let me just back that down to two miles an hour. I kept at it, and I increased it about ten percent every week, so come May I was back to running. So, it took me a while but I got there.

Lee: Good for you. How has this whole process changed you, Dot?

Dot O’Shea: Oh, my goodness. Well, I spent a lot of time talking to the media, and doing podcasts, and anything I can to get the word out about early detection, and about how there are options. If you’re like me, and you don’t want to go for the colonoscopy, that’s fine. You’ve got to do something to get yourself screened. It is just, there’s no reason not to. The test I took, I didn’t have to do any kind of prep. I basically just went to the bathroom and then took a box down to the UPS store and shipped it off; doesn’t get much easier than that. If you don’t want to drive to the UPS store, you can call and have them come pick it up at your house.

Lee: I often wonder when you fill out the packing slip and they say, there’s that blank line that says contents.

Dot O’Shea: You don’t even have to fill out a slip; they have the return shipping label on there. I don’t even know what they put on there for contents.

Lee: Yeah. Little bit of warp colon humor.

Dot O’Shea: Yes. I find I talk about poop a lot more these days.

Lee: Don’t we all, don’t we all. So, let’s wrap up. Let’s talk a little bit about, what words of advice do you have for those folks who are struggling to get their friends and family members screened?

Dot O’Shea: The first thing you need to realize is that early detection is wonderful. Cancer is not necessarily a death sentence. It’s a major life event, but it’s curable, the earlier it’s caught the more curable it is. There are people in organizations out there that will offer you support. They have resources available to you. You just have to do it. You’ve got to get screened. If you do have cancer, it’s not necessarily, what’s the word I’m looking for, here? Like I said, it’s not a death sentence.

Lee: You and I are living proof of that.

Dot O’Shea: Yes.

Lee: Well, Dot, thank you so much for taking a little bit of time to share your story and inspiring other folks. I want to wish you continued good health, first and foremost, so six month survivor. Look forward to seeing a post online, celebrating your one year, and then your two, and then your three. Thank you for all that you’re doing to really help spread the message of early detection, because just like your friend John, by pushing you, saved your life, clearly there are people out there whose lives are being saved by you.

Dot O’Shea: Thanks, Lee. It’s great talking to you.

Lee: You, too. You take care.

Dot O’Shea: You, too. Bye bye.

Dot O’Shea Shares Her Story On NBC Nightly News

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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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