Tag Archives | ostomy

What Cancer Taught A Disaster Psychologist About Faith and Resilience

What Cancer Taught A Disaster Psychologist About Faith and Resilience

Dr. Jamie Aten

Dr. Jamie Aten is the Founder and Executive Director of the Humanitarian Disaster Institute and Chair of Humanitarian and Disaster Leadership at Wheaton College. A survivor of colorectal cancer, he’s also the author of  A Walking Disaster: What Surviving Katrina and Cancer Taught Me About Faith and Resilience.

During our conversation we discussed:

  • How Terror Management theory explains why some people struggle to support those going through traumatic experiences like cancer.
  • How he struggled to ask for help during his treatment and how he overcame this challenge.
  • Redefining “strengths” and “weaknesses.”
  • How growing up in a small, blue collar town impacted his view of the world and his career choice.
  • How he came to be diagnosed with colon cancer in 2014.
  • Why those touched by cancer should be cautious of optimism.
  • How Post-Traumatic Stress Disorder (PTSD) can affect cancer patients.

Links Mentioned In the WE Have Cancer Podcast

Jamie’s book, A Walking Disaster: What Surviving Katrina and Cancer Taught Me About Faith and Resiliencehttps://www.amazon.com/Walking-Disaster-Surviving-Resilience-Spirituality-ebook/dp/B07M6QL56C/ref=sr_1_1?crid=1ZRLYE0B9A1PN&keywords=a+walking+disaster+by+jamie+aten&qid=1571591927&sprefix=a+walking+dis%2Caps%2C170&sr=8-1

CancerToday article, Coping With Traumahttps://www.cancertodaymag.org/Pages/cancer-talk/Coping-With-Trauma.aspx

Humanitarian Disaster Institute – https://www.wheaton.edu/academics/academic-centers/humanitarian-disaster-institute/

Lotsa Helping Hands – https://lotsahelpinghands.com/

Follow Jamie on Twitter – https://twitter.com/drjamieaten

Follow Jamie on Instagram – https://instagram.com/drjamieaten

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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Fear of a Cancer Recurrence; An Emotional Conversation With Courtney Forget

Courtney Forget & Bagel Man

A cancer recurrence is every cancer survivors greatest fear. In her return visit to the WE Have Cancer podcast, Courtney Forget talks intimately about this fear. We also discussed:

  • How she went from looking forward to her ileostomy reversal – as discussed in Episode 43 – to loving her life with a permanent ostomy.
  • Living with the constant fear of a cancer recurrence after having two “cancer scares.”
  • The importance of getting second, and even third, opinions.
  • Her thoughts on being naive about her initial diagnosis and how she looks at her survivorship today.
  • Why she’s not a fan of ringing the bell at her cancer center after completing treatment.
  • The role her husband has played as her cancer caregiver.
  • The reason she adopted a Greyhound dog and why she’s training him to be a therapy dog.
  • The challenge of moving to a new city and finding a new Oncologist.

Links Mentioned In the WE Have Cancer Podcast

Courtney’s first appearance on the Colon Cancer (WE Have Cancer) podcast – https://wehavecancershow.com/043

Pet Partners – https://petpartners.org/

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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Living An Active Life With An Ostomy; With Colorectal Cancer Survivor Doug Dallmann

Doug Dallman

Doug Dallmann leads a very active life despite his ostomy. That wasn’t always the case; however. When he awoke from his surgery for stage 3 colorectal cancer in 2010 he was devastated to learn he was left with a permanent ostomy. He was “filled with anxiety, depression and uncertainty.”

Adjusting to life as an ostomate took time, but within a few months he achieved his goal of completing a 100-mile century bike ride.

During our interview we covered:

  • Why he wanted to take on the physical challenge of hiking the Pacific Crest Trail and the unique challenges doing so with an ostomy.
  • The emotional challenge of accepting his ostomy and how he moved from “denial” to embracing his new life.
  • Navigating the social and dating scene with an ostomy.
  • Why he decided to compete in a body-building competition.
  • What’s next for him on his list of adventures.

Connect with Doug

His story featured on the Colon Cancer Coalition website: https://coloncancercoalition.org/2018/10/06/an-ostomy-life-unlimited/

On Instagram – https://instagram.com/pacnwtrekker

On Facebook – https://www.facebook.com/doug.dallmann

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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How One Person Can Influence Favorable Cancer Legislation, With Michael Holtz

How One Person Can Influence Favorable Cancer Legislation, With Michael Holtz

Michael Holtz is a 6 1/2 year survivor of Stage IIIB rectal cancer and is the author of the book It’s Not Harder Than Cancer. Michael first appeared on this podcast in 2015. You can listen to that interview here.

Michael and I discussed the cancer advocacy work he’s been doing with the American Cancer Society and as the Tennessee state representative for the American Cancer Society’s Cancer Action Network – ACS CAN.

In April 2018 the Provision CARES Foundation recognized Michael Holtz as the Patient Advocate of the Year.


Links Mentioned In The Show

Michael Holtz’ website – http://www.michaelholtzonline.com/

Michael on Facebook – https://facebook.com/michaelandrewholtz/

Michael on Twitter – https://twitter.com/michaelholtz

It’s Not Harder Than Cancer – Available on Amazon


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Supporting the Ostomy Community, With Deb Fox

Supporting the Ostomy Community, With Deb Fox

Supporting the Ostomy Community, With Deb Fox

Deb Fox has made it her mission to help the members of the ostomy community. She has created a private Facebook group – OstoMyFamily – to provide those with ostomies a private, safe forum to discuss all things ostomy. Her websites – ostomy211.com and ostomy211.org -provide numerous resources, along with support, for the ostomy community.

Deb received a complete hysterectomy in 2012 for ovarian cancer, and an Ileostomy in 2014 due to Ulcerative Colitis. The UC had cut the blood supply off to her small intestine, so she was left with 4 1/2 ft of the normal 25 ft of intestines. At the time, she had no insurance. “What good is having an Ileostomy to save your life when the quality of your life looks to be extremely debilitating?” Deb said. That is when she realized she needed to be one of the people to step up and make a change. The first thing she did was to locate the United Ostomy Associations of America (UOAA), and become a certified visitor. She then volunteered at the hospital where she received her surgery. It has blossomed from there. There are many, many reasons why someone my need an ostomy. Cancers, IBD, Birth defects, traumas, etc. This is why our ribbon is rainbow colors – It gives respect to all of the different colors of awareness ribbons.

Deb’s Links to Ostomy Resources:

  • ostomy211.com – is like a yellow pages directory for ostomates. It is broke down into categories so people can better locate the resources they need.
  • ostomy211.org – will give you a more detailed listing of our programs.
  • facebook.com/groups/ostomyfamily – is the online support group we have created for ostomates. It is a private group with over 2200 ostomates and nurses.
  • OstoMyCare. We are working to improve healthcare, thus quality of life to ostomates through collaborations in palliative care. From the doctors, nurses, clinics, and hospitals to support groups, home health, counselors, etc.
  • ostomysupplies.ostomy211.org – provides ostomy supplies for those who are experiencing financial hardships.


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Surviving Colorectal Cancer and Thriving With an Ostomy for 29 years

Surviving Colorectal Cancer and Thriving With an Ostomy for 29 years

Ann Favreau is a retired teacher, published author, and consummate volunteer.  She describes herself as a traveler who marvels at the awesome and finds wonder in the ordinary. Here is her story:

If you had told me in 1988 that enduring hours of surgery to have my rectum and part of my colon removed due to colorectal cancer would significantly contribute to a wonderful new journey in my life, I would have thought you were crazy.  However, that is exactly what happened. Not only have I been cancer-free since the operation, but I have been able to turn the experience into a positive one for me and thousands of others.

Colostomy is a dreaded word in most people’s vocabulary. The idea of having a plastic pouching system adhered to your abdomen to hold fecal waste is not a pleasant thought. Yet, I have managed to live a productive life in spite of altered plumbing.

After surgery I joined a local chapter of the United Ostomy Association (UOA).  They provided the information and support I needed. As a trained visitor, I sat by many a bedside to help others with practical tips and offer hope. Soon I became President of the local group and went on to work in the Field Service Program of the national organization helping other chapters work more effectively.

From 1996 – 2002 I served the UOA as Secretary, Vice President and President. Along the way I met hundreds of people whom I now call friends. I wrote The Healing Circle, a book of poems dedicated to all those who have diversionary surgery, and published messages of hope in the Ostomy Quarterly and Phoenix magazines. I just completed 11 years as the volunteer  Secretary for the International Ostomy Association and was aware of the plight of those in the global ostomy community. As President of the Friends of Ostomates Worldwide-USA, I have been able to address these needs in a practical way. This organization sends donated ostomy supplies to needy ostomates in developing countries.

I have been involved in efforts to address the prevention of colorectal cancer since my 1998 invitation to the White House Colorectal Cancer Prevention Initiative Ceremony by then first lady Hillary Clinton.  Katie Couric’s heart wrenching speech that day about her husband’s death due to this disease led to my personal and organizational involvement through the United Ostomy Association to begin prevention activities which included  spreading the message of the importance of knowing one’s family history.  I continue to serve as an individual member of the National Colorectal Cancer Roundtable.

I have served as a Buddy for the Colon Cancer Alliance for over 10 years.  Being able to talk to someone before or after surgery to provide information, inspiration and allay their fears is such a great use of my time. Locally I am facilitating the Venice, FL ostomy support group. I have touched people in small and large groups in a way that I never would have imagined in those early days dealing with pain and despair. My journey has taken me around the world, to the White House, and into the hearts of other survivors. This seemingly dreadful experience has enriched my life and helped me to make a difference in the lives of others.

What can you do to make a difference? Share your story. Revealing your personal journey with an ostomy helps others. Send your story to Colon Cancer Alliance Stories of Hope, Ostomy Connections and to the Phoenix magazine. You, too, can impact someone’s attitude by your revelations. Providing information, education, and support to other ostomates is a worthy endeavor. It has been very rewarding to me that my words have had a positive effect on others. I learned that a woman kept my poem Reclamation on her refrigerator and read it each morning to get through the day.



Illness, pain, and surgery.

I’ve been cut apart.

Left to cope with healing,

And sorrow in my heart. 

But as my body starts to mend,

Self care becomes mundane,

A little voice within my soul

Murmurs this refrain…

You’re alive!

Ann’s book, It’s Okay to Have an Ostomy, is available on Amazon.com.

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Sex and Intimacy While Dealing With Cancer, With Dr. Sage Bolte

Sex and Intimacy While Dealing With Cancer, With Sage Bolte

Sex and Intimacy While Dealing With Cancer, With Sage Bolte

A couple of month’s ago I received an email from fellow survivor and former podcast guest, Stacy Hurt. She said she recently attended a presentation where Sage Bolte was the presenter and I had to have her as a guest on the podcast.

Dr. Sage Bolte serves as the Executive Director of Life with Cancer and Associate Director of Psychosocial Programs for the Inova Schar Cancer Institute.

She talked about sex and intimacy and the impact that a cancer diagnosis can have, not only the patient, but the caregiver as well. We discussed the different challenges that men and women face along with the patient/caregiver dynamic.

This was a frank and informative discussion.

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Interview With Colorectal Cancer Survivor and Artist, Matthew Mewhorter

Interview With Colorectal Cancer Survivor and Artist, Matthew Mewhorter

Interview With Colorectal Cancer Survivor and Artist, Matthew Mewhorter

Matthew Mewhorter is a two year survivor of colorectal cancer. Many in the online community are familiar with Matthew’s drawings as the Cancer Owl. During our interview we discussed his experience being diagnosed and treated for colorectal cancer, his work as an art therapist and how and why he created the Cancer Owl.

Lee: Matthew, welcome to the show. How are you?

Matthew: I’m wonderful, thank you, how are you doing?

Lee: I’m doing great. I appreciate you making the time to share your story with the Colon Cancer podcast audience, I really appreciate it.

Matthew: Wonderful, yeah, thank you so much for having me. I’m really excited. I’ve been excited about this for a while.

Lee: Awesome, I love hearing that. So, how did colo-rectal cancer become part of your life?

Matthew: November of 2014. I had the official diagnosis of colo-rectal cancer. After having about a year’s worth of symptoms. Yeah, November of 2014, my daughter was just a little over a year old, and this with the knowledge that my grandfather died of colon cancer when I was young. So, it was a dramatic shift. I mean, it was like something that kind of took the wind out of me, but it was something I kind of saw coming a little bit, because of having bleeding symptoms almost a year previous, and because of so many stomach issues in my family I thought, well, you know, maybe it’s colitis, maybe it’s IBS, or maybe I just need to stop eating like the spicy food and stuff like that like I love, and maybe it’s stress and my body’s reacting to stress. My job was very stressful at that time, so I was thinking, well let me see about just trying to make my job better. I went and got therapy. So I kind of saw it coming, but nothing really prepares you for hearing those words on the phone, it’s cancer. I heard that on the stairwell, going, at my work. It’s an old house, so these wooden stairs, and I’m walking down the stairs, and I had the colonoscopy and they told me the found a mass, but it could be anything. It might not be cancer. The day after I was just on the phone with the Doctor and she just came right out with it. Like, didn’t spare me any time to prepare. She’s just like yeah, it’s cancer, and I was just walking down the stairs and I almost tripped and fell down the flight of stairs.

Lee: Isn’t that something? We all have that exact image in our mind of where we were and what we were doing when we heard those words, right?

Matthew: Absolutely. Yeah. Yeah.

Lee: So did you basically kind of just try to deal with the symptoms, and I don’t want to use the word ignore, because it sounds like you tried different things, but did it take a year before you actually went and saw a medical Doctor?

Matthew: A little less than a year, actually, because it was a little bit before, a month or two before Thanksgiving. 2013, I was having bleeding on and off, like when I went to the bathroom. Then, yeah. I tried to, like you said, I tried to do some things about it. I tried maybe eating this different, maybe eating that different, maybe exercising a little more, maybe taking down my stress, then it would kind of go away for a little bit. Then it would return, so I’m figuring, well oh, it worked when I did this, so I went and saw a Doctor, and I started putting it off. I even had a friend over Thanksgiving that came to visit and he goes, I’m worried about you, bud. He goes, I really think you need to get that seen. He’s like, you know. I’m sure you’re fine, and that started putting it in my head that I needed to see a Doctor, and at the time I didn’t have insurance, and I was getting insurance stuff taken care of. So, I just, and I didn’t want to worry my wife, and I mean, we were new parents and I just was like, seeing if on my own I could kind of get this thing to go away, because I had these symptoms back in 2007 but it was just a polyp, when I got a colonoscopy. So I thought, well maybe that’s all it is, and maybe I can just change a few things, because it went away when I ate like, a vegan/vegetarian diet over the years. So, it was about in the summer, July I think it was, when I went and saw a Doctor. He was an older doctor on his way to retirement. He’s like oh, classic colitis. He’s like, you Scandinavian types, you know. You’re, it’s probably a dairy intolerance. Cut out dairy for two weeks and it’ll probably go away. He’s like, but I’ll set you up with the GI, but he’s like, it’s not going to be until December, because we, only for cancer cases, people we think have cancer. We only set up, we’d only make it more immediate if we thought it was cancer. He’s like, but you’ve got classic colitis. So, I had to wait all the way until December from summertime to get my colonoscopy, and I saw the GI. She’s like oh, it’s classic IBS. She was preparing me on how to manage IBS and so, you know, it was just, it wasn’t anything I was terribly worried about. The Doctor seemed pretty confident, but little by little, I was having more and more worries. You know, staying off the mystic, but yeah. So I had to wait a while because, and it was funny, by the time I started seeing a radiation oncologist, I told him how the Doctor said I had classic colitis. He’s like, that’s funny, because if you’d talked to one of us, we’d say all your symptoms are classic rectal cancer.

Lee: Of course. Depends on perspective.

Matthew: Right.

Lee: So how old were you when you were diagnosed?

Matthew: I was 35.

Lee: So, why did you have the first colonoscopy in 2007?

Matthew: I had the first colonoscopy, because I was having similar bleeding symptoms, and also I was having a very stressful job at the time. It was similar work that I had when I was having the stressful year in 2014. It was like, similar circumstances, even the same boss. I returned to a work place that had similar people that I worked with, with a similar work environment. It was back then, and they said that, it was 2007. I was bleeding when I was going to the bathroom, but it wasn’t as severe as what drove me to get another colonoscopy. So, I just got a colonoscopy then just to kind of clear my base, and they said yeah, it’s a polyp. We cut it out. We’ll do a biopsy and let you know if we see anything, they never contacted me or anything. So, I just went on with my life and didn’t really follow up with that Doctor.

Lee: I see. So what stage were you diagnosed?

I was diagnosed stage 2 colo-rectal. Which I was really thankful, I mean I was almost preparing, I was starting to have a lot of guilt before my staging. It seemed like forever before I was staged. I was so nervous because I’m like man, it’s been like a year, you know. I remember a year ago my friend telling me, I confided in him, and telling me, and I waited. It’s been almost a year, so I was pretty thankful that it didn’t go past a stage 2, and it was all localized, so it didn’t spread. I didn’t have any, it didn’t travel anywhere, so. My treatment was, I started out 25 rounds of chemo with radiation at the same time, I had to sign a waver for that because they still considered that experimentals that they told me. So I took xeloda, four pills in the morning, four at night. Only on the days I did radiation. I then took a minor break from that in early February, and then late March I got surgery, resection which gave me an ostomy bag, and then I was prescribed up to 6 months of xeloda, 3 in the morning and 3 at night while I was, you know, had the ostomy bag. Then, after the xeloda was finished in October, I was, I had a little bit of a break before having my reversal in December, and here I am.

Lee: So you’re coming off close to a year since your reversal.

Matthew: Correct.

Lee: So, your scans since your treatment ended have all been good?

Matthew: Oh yeah. Lymph node negative, I am NED currently, and in fact my last scan, my last exam with the surgeon was so good that she’s just going to re-look at me in a year rather than 6 months.

Lee: Congratulations.

Matthew: Thank you. Thank you. Everything has been completely clean, completely clear. The surgery got everything out, I mean absolutely everything, so that we, we did follow up chemo for up to 6 months and cleared out which is, I mean by October last year, that’s when they gave me the news after I got scanned some more that everything checked out. Excellent.

Fantastic. So you mentioned your quote, stressful job. What do you do?

Matthew: I’m a therapist, but I’m still what’s considered a resident in counseling, meaning that I’m almost licensed, but I do a lot of the dirty work, and sort of more of the bottom of the totem pole toward. I’ve been a counselor now for well over a decade, about 12 years. I’ve done work with at-risk teens before that, but working with a lot of at-risk populations, you know, some pretty tough situations, and did a lot of what’s called in home counseling where you go into homes, destabilize them. The homes that are, really in danger of out of home placement removals and all that stuff. My work is becoming more and more sophisticated as I’m getting closer to licensure. Still, it’s a lot of learning, it’s a lot of working for places that have a lot of high need, a lot of documentation, a lot of balancing, between the clinical work and the way the documentation is done. It can be very high stress. Plus, when I started at the place I’m working now, there was just a lot of needs they had. I kept saying, yes to everything. I kept saying yes to this and yes to that. I was doing way more than I should have, and I wasn’t recharging my batteries at all. It kind of overtook, and I was heading straight for burnout.

Lee: Now, you use art as part of your therapy?

Matthew: I do. I do. Almost entirely. After my diagnosis I was able to really streamline what I did. My workplace has been incredible as far as just saying okay, let’s take this load off of you and have you just focus on what you’re really good at, and so I do just almost entirely outpatient with exception of supervising some staff, apart from that I mostly just do outpatient, and it’s mostly art, and I do mindfulness. Also, mindfulness based stress reduction as well. Mostly for teenagers, so I do a lot of meditation now in my sessions, a lot of meditation, a lot of art expression. Very calm, very chill, in my sessions.

So I need to introduce you to a couple that I interviewed last week.

Matthew: Oh.

Lee: David [inaudible:12:29] and his wife Tamara Green. David is a cancer survivor, and they created a meditation app, targeting cancer patients and caregivers.

Matthew: Oh wow. Yeah, I’d love to get hooked up. That would be awesome.

Lee: So stay tuned for that episode coming up, I’ll share that with you and with the audience. So, now that we’re talking about art, many of those online that followed your story Matthew, particularly on Facebook, know you for your work as a comic artist with the Cancer Owl. How did that come to be?

Matthew: I was so thankful to have my therapist in place when I was diagnosed with cancer. One of the things he really suggested to me was to start art journaling my experience. He said do it for self care first, but it could be something that could benefit a lot of other people, so I kind of had the idea, I started art journaling, but I kind of had art journaled with the intent of maybe being able to share it with people, and I was. After my re-section surgery, I was in the hospital for 5 days and recovering and, when I could sit up I started art journaling and I just decided to draw an owl. The idea, because I thought of using people, like drawing myself in cartoon form, and it just didn’t sit well with me. I loved the idea of drawing animals instead. I felt like I just, it allowed for people to talk about it by looking at cute animals as opposed to looking at cartoon versions of myself. I just, and I liked how the way I drew the owls really simply on purpose, so I could draw it several different ways, and it was easy to draw, easy to incorporate in outfits, and different angles and different expressions very easily. So that’s, so it just started with me starting to chronicle my experience. I just, I wrote those comics straight from the gut. Exactly how I was feeling. I didn’t hold back.

No pun intended.

Matthew: Yeah. Right. Right. Yeah. Straight from the gut yeah, and yeah. I had, I didn’t hold back on just my thoughts and feelings about false sincerity of people, about what it’s like to sit there and have all these people saying things to you, and I wanted to create almost that feeling that even though you’re surrounded by people telling you this and telling you that, that it still has this lonely feeling about it. That almost feels like people talking at you, and so, if you look at my very first couple of comics, you don’t even see the people that I describe. You just see the Owl at the center with his word bubbles. I did that very much on purpose, as I wanted to kind of give this lonely sort of isolated feeling that cancer patients often have. Even if they’re surrounded by people.

Lee: Was there a reason why you chose the Owl specifically?

Matthew: I love owls. Owls are my favorite animal. Always have been. Owls are just very expressive, and they, I love how owls can look easily annoyed as much as sort of like, inquisitive. An owl’s expression I think captures people’s facial expressions very well. I feel like owls in particular capture personality very very well, and again it was kind of saying earlier too that the way that I drew the owl felt like something I could draw over and over, and I even thought later as I was releasing the comic is that owls, I mean, cats are the king of the Internet, but other animals that circulate very easily on the internet are owls and sloths. Since owls have always been my favorite animal, it just kind of made sense.

Lee: I see. Now, you from what I saw and the way you describe it, do you, you kind of put it pretty out there as far as how you felt some people interacted with you. Was there any backlash?

Matthew: Yeah. Yeah, I had a friend say have a nice life dude, we’re over. This is someone that, I released my first couple of comics, and this is a friend I’ve known since childhood. I mean, we haven’t lived in the same state in a really long time, but we always kept in touch, and he’s always been a little bit weird on the Internet. He had written, after I was diagnosed, he had written me and he was telling me. Well, I’d donate to you and all, but I’m going on this cruise, all this. I’m going to have a good time on the cruise and all this and that. Oh and hey, I’m writing a book. You want to do the pictures for it? You know, not offering to pay me for it or anything. You know. Kept bugging me when I needed to be doing this project, so they saw me do the comic and then he was confronting me really hard about my very first comic, which was basically, to give a little background on that first comic I released, it shows people saying, oh is there anything we can do? What can we do for you? Just tell us anything at all, and the owl says, well I do have a go fund me account. They’re like oh well, see you later. We’ll be praying for you. We’ll be thinking of you. I just left it at that, you know. I didn’t even show the owl as annoyed, I just showed the words there, and because he had written me right after diagnosis about not being able, and not that I cared. I didn’t care if anybody couldn’t donate. It’s just this false sincerity is what I was kind of challenging. He, this sort of false sincerity I think all cancer patients can relate to, but he just got very very angry with me about that because, he had made this statement about going on this cruise and this and that, not being able to afford to donate anything, and not that I cared. I was fine if he went on a cruise. It was just, I couldn’t believe, he was absolutely embodying my point of the first comic over and over. He wouldn’t let it alone on the line that he was getting me angry, and I was getting all of these great reviews over my first few comics, and he was spoiling it. Day one. Absolutely. Spoiling it, and just telling me, he was like, here’s what you need to be telling people with cancer. You need to be doing comics there like this. He never had cancer. No one in his family did. He’s telling me how to be a cancer patient.

We all have stories like that, right?

Matthew: Right. Right. Right. Yeah. So I just tell him I’m like, you know, I confronted him back and then he got angry because I called him on it. Then he was like, our friendship’s over, have a nice life dude, and all this. So that was one of the only ones I had. Other than that, I’ve had glowing reviews. I’ve had very very very very few negative backlash reviews.

Lee: Do you feel, now I’m going to get clinical on the counselor here, do you feel that this gives you a vehicle to be someone through your comic that perhaps you’re not quite as comfortable being in person?

Matthew: Yeah, actually. That’s a good way to put it. It’s definitely, a lot of the comic has a lot of, now I’m missing the word I’m looking for on it, but basically able to extract some things and bring it outside of myself in a different character. I made it a point to let people know that the owl was me, so yes. Certain things, because a lot of people got to see the real cheery side of me, which that’s what most people see, but some of the cynical feelings I allowed to come forward a little more in the comic. Some of the more annoyed feelings that I had, you know, that was a little harder to do. So yes, and I allowed a lot of things. Like the way I illustrate cancer, to also be that to sort of extract outside of myself a little bit.

Lee: Is there a particular comic that you’ve produced, Matthew, that has, that you’re particularly proud of?

Matthew: Yeah. So you have cancer is my favorite that I put out. I took a long time on it, it took me weeks to put together, I’m very proud of it because it’s a love letter to cancer patients. It rounds up all my thoughts and feelings about the cancer experience, and it’s my way of giving back. It was me, toward the end of that journey. Not quite done with it, as far as the treatments and everything. It was kind of my way of looking back and giving back, and I feature that even if you go on my website, it’ll say if you’re just diagnosed with cancer, click here. I’m very proud of that one.

Lee: Where can people find that online, Matthew?

Matthew: www.cancerowl.com

Cancer Owl dot com. Very good. I’ll put a link to that in the show notes for this episode, too.

Matthew: Great. Great.

Lee: Well as we wrap up Matthew, and I know you’ve been a fan and supporter of the podcast so you know what my next question is, and that is for folks who are listening to our conversation and they themselves or someone they care about was recently diagnosed, what words of advice do you have for that person?

Matthew: Some of my words are, for a while [inaudible:22:14]. Breathe first. Also, one of my, another word that I use and almost want to turn into a hashtag, is most folks are awesome. As cynical as I get in a few of my comics, that’s actually really having a little fun with a minority. Most people are awesome. Look for those folks, and look for support. My third thing I say is never shut up. What I mean by that is that there’s been this culture surrounding cancer to where so many people, and I think why people have connected to the comic, is because so many people have written me privately to tell me that, you know, they don’t feel like they can talk about it. They feel very alone, you know. People shut them out. My advice to the people who are diagnosed is, don’t allow people to push you in a corner and make you be quiet. Don’t shut up.

Lee: I love that.

Matthew: In fact, never shut up.

Lee: We need to make T-shirts.

Matthew: Yeah. I know. It probably will be. I’m actually in the process of designing some T-shirts and that’s, that is an idea. Yeah. Never shut up, and reach out to people. I have found, I accredit Cancer Owl to being a very big part of my successful recovery, because it has been a constant outlet. Maybe you’re not artistic, and that’s fine. Maybe you’re not a writer for a blog or do a podcast, but you can get on a cancer support group. You know, for colon cancer, colon town is this phenomenal hub that you can join on Facebook to connect and reach. Just talk to people. Reach out. Don’t feel like you have to do this by yourself, because you don’t. There are so many opportunities not to be alone, and I know that there’s a lot of people that say well, you know, let’s respect people’s decisions. If they want to be quiet and not tell anybody, honestly, and maybe this might make me a hair unpopular. I kind of challenge that a little bit. I like to say, you know what. As a therapist too, it helps to talk about it, and while I will respect your decision not to, respectfully I’ll challenge that a little, too. To say, you know, this is a hard thing to deal with by yourself. We need people. One of the first things my oncologist asks me, he says, he looked at me and my wife and goes, how’s your marriage?

Lee: Wow.

Matthew: Yeah. He says I can’t tell you how many people come in my office that don’t have anybody.

Lee: That’s true. We know a lot of them, don’t we?

Matthew: Yeah, a lot, that are just, that by themselves, you know. So yeah, there’s some real heroes I’ve come to find, in the colon cancer world, that are heroes of mine just simple by speaking up, you know. Nathan, Drew Allen, and Steven Estrada, people that just have said you know, they’re talking about it. Reaching out so never shut up, most folks are awesome, and breathe.

Lee: I love those, and you are pretty open about how meaningful your wife and your daughter are to you, so I know like myself, I’m just as blessed to have an absolutely amazing wife and family, and it certainly makes a difference. You’re absolutely right. So, in addition to your website, at cancer owl dot com, where else can people find you on social media?

Matthew: You can find me on Facebook, search in Cancer Owl on Facebook, @CancerOwl is my Twitter handle. I’ll be honest though, I’m the worse tweeter on the planet. I mean, I just don’t know about that, about Twitter anymore. I keep it, but I have an Instagram, which I’m growing quite a bit. So you can find Cancer Owl on Instagram. Also, I’m beginning, and I haven’t really readily announced it yet, but I don’t think there’s a problem in me doing so. I’ve already blogged a little bit, before I had cancer, which is phenomenal. I call it Facebook for cancer patients. I had cancer is incredible.

Lee: They’re great on Instagram, too.

Matthew: Yes, they are. They’re awesome, and they have given me the opportunity to do, to feature cartoons directly on their site, so there’s going to be cartoons of mine that will be made specifically for I had cancer, so be on the look out for those. There’s one that’s going to be posted, and so I’m really glad to team up with that organization.

Lee: Terrific. Well Matthew, thank you so much for taking time to share your story with me and our listeners. I really appreciate it. Congratulations on being NED, no evidence of disease, and many many many lifetime of that being part of your life. I know you’re an inspiration to those of us who aren’t there yet, including myself, but we want to join that club no doubt, so thank you for spending time with me, and I wish you all the best.

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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.


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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