Tag Archives | colostomy

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

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Her Colorectal Cancer Symptoms Were Dismissed and She’s Happy To Be Alive

Sasha DeNisova

I learned of Sasha’s story through a Faces of Blue profile from The Colon Cancer Coalition. Here’s the article:

18 months, 78 weeks, 546 days, 13104 hours, 786240 minutes. I heard him, but I didn’t really hear him. I stared into his face trying to keep composure. Eighteen months with a good quality of life was all the doctor was offering me.  I went to speak, and my voice cracked. Tears poured down my cheeks.  Eighteen months was better than the status quo, but was it really enough time? His look was that of understanding, “A good quality of life for someone so young is very important,” he proceeded.  What was quality of life? The life I had before I was sick? The one with no physical limitations? 

“Young people have a really hard time coping with colostomy. Acceptance typically comes with age,” the doctor stared me down as tears rolled down my cheeks. Hard time doesn’t even describe it.  The first couple weeks I didn’t know how I was going to make it to the next day, let alone a week, a month, a year.  Was it really better now?  I was coping better, that’s for sure. “Given your diagnosis, the immediate goal is to give you quality of life with what little time you do have.” The lump in my throat was refusing to go away.  I had so much to say, yet nothing came out.  Time suddenly became the most important thing in the world.  Time wasn’t something I had.

As if the news of my short life wasn’t devastating enough, the doctor proceeded to ramble on monotonously “The surgeon found cancer cells on your uterine wall. I want you to prepare yourself that a full hysterectomy is a real possibility.” Here I was, worried about trying to preserve my eggs during chemotherapy, while the doctor talked about taking away the possibility of having children forever as if we were reviewing menu options for Sunday brunch. Until the cancer diagnosis, I didn’t really that think that I even wanted children. Focused on my career, I’ve always thought I’d have more time to make the decision that was right for me.  The loss was so real and profound.  I felt as though I was being robbed of something from the inside out.  My aunt looked over encouragingly, “It’s not like you need those parts anyway.” Excuse me? I don’t need those parts? I was screaming inside my head. What about a possibility of having my own family? One day reading a bedtime story to my son or daughter? I was getting ahead of myself.  Who was I kidding?  Eighteen months.  That was all that was on the table.

“I want you to understand that surgery might not be successful,” the doctor continued.  This wasn’t a shock.  The latest study on HIPEC (hyperthermic intraperitoneal chemotherapy) conducted in conjunction with researchers at the University at Buffalo, University of Michigan, Mount Sinai Hospital, and the University of Toronto showed the mortality rate between 8-11% with perioperative complication rate of 27–56%.  Furthermore, the 5 year overall survival rate for colorectal adenocarcinoma was just 38.2%.  One of three makes it, plain and simple. I realized in that moment how much I wanted to live.  The surgery was a chance, a chance to have a normal life. Reconnection at the time of HIPEC meant getting rid of the dreadful bag forever.  A glimmer of a normal life was worth the risk any day of the week. I so desperately wanted some semblance of my old life back, the one without pain, constant worry, nausea, and the bag. I wanted my old wardrobe back. I wanted to go swimming. I wanted to run the Tough Mudder, the Spartan, or even the Warrior Dash. I wanted the old me back, the one who wasn’t dying.

I couldn’t help but wonder what my life would have been like if the doctors would have caught this disease on time? With no family history of cancer, I was not a candidate for a colonoscopy until the age of 50.  My last physical, I passed with flying colors. My family physician went as far as to deem me the healthiest one of his patients. Little did he know of a tumor that had setup shop in my colon and was growing every day.  The what ifs, and the could have beens plague my mind every day.

I took a deep breath and tried to think back on my life.  It has been a good one! Surrounded by friends and family, armed with a great career, I was on top of the world up until that fateful day of April 11, 2017. It was a day like any other.  Having caught a bad case of E.coli in France two weeks prior I was still recovering.  I was not 100% and have not felt like myself since returning stateside.  That morning, I woke up to find a lot of blood in my stool and immediately called my family doctor.  His nurse advised to go to urgent care.  I knew blood could mean cancer, IBD, Crohn’s or any number of other maladies, none of them good.  Numerous blood tests to check for infection and parasites came back with nothing.  The urgent care doctor collected a stool sample and promptly referred me to a gastroenterologist the following morning.

The gastroenterologist was the crude sort who looked me up and down, saw a pale girl with tattoos and losing weight, and assumed that it had to be drugs. It never occurred to him that I, a successful professional, was truly sick. My tests were squeaky clean: no parasites, no Campylobacter, no Salmonella, no Shigella, no Vibrio, no Yersinia, no Shiga Toxin, no Norovirus, or Rotavirus. He scratched his head, gave me a quizzical look, gazed deeply into my eyes and told me: “You have all the symptoms of a chronic pot smoker, just admit that you are on drugs.”  I haven’t smoked pot a day in my life and did not condone drug use on any level.  His statement was offensive.  Furthermore, I was pretty sure I actually knew chronic pot smokers, and none of them exhibited my symptoms. He proceeded to tell me that a liquid diet will cure me and sent me home to wait for a sigmoidoscopy the following Friday.

The pains started sharp and debilitating. It felt as though someone was stabbing me in the stomach repeatedly.  The sigmoidoscopy showed nothing.  The gastroenterologist informed me that results of the biopsy will be mailed to me in about a week’s time or so and to keep not eating.  Outside of my blatant “drug use” there was nothing wrong me. When I protested informing the doctor that by the end of the following week would be almost two weeks since I’ve eaten, he laughed and told me: “If I could go three weeks without eating in college on a bet, you can last two weeks.”

By Monday, I was in so much pain I was not able to function. I haven’t slept since the previous Friday and found solace in calling the nurses’ line repeatedly to see if the results of the biopsy were in. By mid-day Tuesday a very annoyed nurse told me that there was absolutely nothing wrong with me and to please stop calling. The gastroenterologist was kind enough to refer me to a colorectal surgeon to appease me but the first appointment wasn’t for another week and a half.  I didn’t know what to do.  Every minute I was getting worse and could no longer make it up and down the stairs of my house relying on my neighbor to let my dog out.

 

To my relief, the voice on the phone informed me that the surgeon could see me first thing Friday morning. The doctor’s face was cold and grim, “You are obviously very sick.  What I don’t understand is how you ended up in my office with no diagnosis.” For the next fifteen minutes he went over the possibilities of what could be wrong with me (none of them cancer) and promptly sent me in for a CT scan.  Not even twenty minutes after leaving the hospital, a worried voice on the other line advised me to return to the hospital since I needed to be admitted immediately.  I was informed that a large abscess about an inch higher than the reach of the sigmoidoscopy was found, and the doctors needed to insert a drainage tube. Diagnosis: infection brought on by E.coli due to diverticulitis. I was pretty sure that only the elderly actually got the disease, but who was I to argue?  Four days in the hospital later, I was released with a drainage tube which came out just two short weeks later.

Unfortunately, I was worse.  The pain was back and excruciating. I had mucosal discharge from the hole left by the drainage tube, and the stabbing pain in my abdomen was worse than ever.  I called the doctor who informed me that discomfort and discharge was normal, and that I should wait for my follow-up appointment. By the weekend I was so sick that I could not get up.  I called my parents for a lift to the ER since there was no way I could wait until Tuesday (my follow-up appointment).  The CT scan revealed the abscess was worse with a breach in the colon wall meaning stool was circulating through my system. Admitted once more, I was pumped full of antibiotics and pain killers. Nothing was working, I was getting worse by the hour. Almost a week later, the infectious disease doctor insisted that I needed surgery, and that we weren’t dealing with a simple infection. No one listened since my surgeon was out of town at a conference and his partner refused to perform the surgery.  He would later tell me that he wasn’t confident that I was going to pull through if he were to operate. It would be over a week until my surgery.  Days were filled with enemas that resulted in complete blockage and stool pouring out of the now gaping hole in the middle of my butt cheek left by the drainage tube.

I was groggy from the surgery. My body hurt everywhere. The overly chipper resident strolled into the room giving me the biggest smile, “High Five!” He reached out his hand. “Someone is still with us! No one thought you were going to pull through last night.” I didn’t know whether to laugh or be angry. I died on that operating table, and by the sheer grace of God and the skilled hands of the surgeons I was still here.  My colon burst as they were prepping me for the surgery flooding my system and my bloodstream with stool and infection.  I went septic, then critical, then flat lined, as my surgeon was removing tumors, affected organs, and attempting to suck out the toxins killing me.  Against all odds, I pulled through. Not even the doctors expected me to make it.

I looked around the room and saw my dad curled up and sleeping in a chair in the corner. Then, I looked down at my stomach, it was red and swollen sporting a colostomy bag on the left hand side, a zipper of staples going from my groin to my bellybutton, and a drain full of bloody mucus. I took a deep breath.  I was grateful to be alive.  It wasn’t my time to go.  The surgery took twenty one cm of my colon, my appendix, part of my rectum, the tumor that burst (the abscess turned out to be a burst tumor), and another measuring 6.5 x 6 x 2.5 cm.

The pathology report came back exactly a week after my surgery. My surgeon woke me up at 11 p.m. and told me that the tumors were cancerous, and he was not sure that he got all the cancer. The tumor breached my colon and there was lymph node involvement. He face showed genuine concern.  He looked at me with fatherly care and told me that it wasn’t fair for someone so young to be so sick.  He was sending me to an oncologist at the University of Minnesota who specializes in HIPEC to give me a fighting chance since there was nothing more he could do for me.

I met with the hospital oncologist the day before being released from the hospital. I spent the last nine agonizing days waiting for my insides to start functioning and getting used to the new normal. A young woman, like myself, the oncologist looked at me with her big eyes full of pity.  She informed me that I had stage IIIb adenocarcinoma of the sigmoid colon meaning that the cancer has breached my colon, one lymph node was affected. She advised me that chemo was very effective at this stage, and that her recommendation was to start as soon as possible, four weeks post-surgery.  I wasn’t a candidate for radiation (a radiation specialist would later confirm this fact) due to location of the tumor. There was a good chance that radiation would liquefy my bladder, causing more harm than good.  The young doctor wanted me to know that there was a chance that chemo would leave me sterile (with radiation there is no chance of not becoming sterile, but with chemo there is a chance that your reproductive organs will still function post treatment).  She recommended Depo-Provera since it puts your reproductive organs into a state of sleep as the best chance to attempt to fight becoming sterile.  Furthermore, she referred me to a fertility clinic.

I called the fertility clinic the moment I was released from the hospital, hoping for medication to offset the effects of chemo, or at least an in person consultation. The woman on the phone informed me that my only option was freezing my eggs.  The cost was $10,000.  No consultation prior to the procedure was available and you needed to prepay to be seen. I would need to start the process on Friday that week because the procedure would not be possible once chemo started. I inquired if there were financing options, payments plan, anything that would enable me to pay the amount over a period of time. Unless I wanted to access my 401K plan taking the tax penalty, I didn’t have $10,000 laying around anywhere nor did I have enough if I emptied both my savings and my checking accounts. To my chagrin, no financing options were available. Furthermore, no help of any kind was available anywhere. The woman was sorry that I had cancer, but informed me that typically people save for years for the procedure and inquired on why I haven’t done the same. I wanted to scream!  I didn’t chose to get sick, and that it wasn’t fair that the choice to have children was being stolen from me by the disease. I would have gladly put the money aside if I had a magic 8-ball that could have shown me the future. I hung up the phone. I had 2 days to come up with $6400 (cost of walking through the door, the other $3600 was due at the end of two week period).  My financial advisor informed me that I would need at least 3 days to receive funds from my 401K plan. Furthermore, the 40% viability rate of frozen eggs didn’t inspire any confidence especially given the fact that percentage plummeted once you introduced fertilization. In the end, I chose to give up.  $10,000 wasn’t magically going to show up in mere 48 hours no matter how I looked at it.  Devastated, I decided to take my chances with Depo-Provera.  What choice did I have? At the end of the day, I had to admit to myself that I needed every penny I had as I stared down the pile of medical bills with more to come as I continue my fight. How many young women were in the same situation?  How many sat there and cried as their chance to have children was being stolen from them?

This is not the end of my story, but just the beginning. Tomorrow is a newer brighter day as the medical community continues to make daily advances. My time isn’t up just yet. I’m going to fight for another day, even if it is for 19 months, 82 weeks, 576 days, 13824 hours, or 929440 minutes because it is my time and I will not waste any more of it on being sick.  I will run my Tough Mudder, purchase my dream home, and just live.  Today, I refuse to let cancer define me and will continue to fight for others like me to get screened so they never are faced with their own eighteen months.

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Colorectal Cancer, Thyroid Cancer, Ewing’s Sarcoma – Ed Yakacki III Is a Fighter

Ed Yakacki III

Colorectal Cancer, Thyroid Cancer, Ewing’s Sarcoma – Ed Yakacki III Is a Fighter

Ed Yakacki III first appeared on The Colon Cancer Podcast in April, 2015 – https://wehavecancershow.com/010. During that interview Ed talked about his his experience with colorectal cancer; a disease that his doctors have now said he’s beaten. Unfortunately, Ed had many more cancer battles in front of him. Since beating colorectal cancer, Ed has been diagnosed with Medullary Thyroid Cancer and then Ewing’s Sarcoma. Since his original cancer diagnosis, Ed has faced 18 surgeries, 32 chemotherapy treatments, 61 radiation treatments and 7 blood transfusions.

There have also been some wonderful things that have happened to Ed. He got married and his wife gave birth to a son. Listen as Ed shares his inspiring story.

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What Can Cancer Do To Your Marriage?

What Can Cancer Do To Your Marriage? Sarah DeBord

What Can Cancer Do To Your Marriage? Sarah DeBord

Like so many young Colon Cancer Survivors, Sarah DeBord was told her symptoms were “probably hemorrhoids.” Several years later she was diagnosed with Stage 3 Colon Cancer. Having recently completed her 125th round of chemotherapy, Sarah says her disease is stable.

During our conversation we discussed:

  • Her work with the Colon Cancer Coalition
  • The Colon Club and her experience spending a weekend with fellow survivors.
  • The important role exercise plays in her physical and emotional health.
  • The effect her diagnosis had on her marriage.

Links mentioned in this  interview:

Sarah’s Blog – ColonCancerChick.com

The Colon Cancer Coalition

Get Your Rear In Gear Run/Walk Event

Tour de Tush

Caboose Cup

On The Rise

Psychology Today – “The New Survivors.”

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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.

 

RECLAMATION 

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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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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Semicolon: Memoir of a Colon Cancer Survivor, With Mark Arsenault


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Semicolon: Memoir of a Colon Cancer Survivor, With Mark Arsenault

Mark Arsenault is a six-year survivor of colon cancer. He was diagnosed with Stage III colorectal cancer in July, 2009. He underwent chemo and radiation therapy, followed by surgery (anterior resection) in November, 2009, another round of chemo followed by “takedown” surgery in April, 2010. He wrote a blog about his experiences through his journey. His book, titled “Semicolon; Memoir of a Colon Cancer Survivor,” details his experience with colon cancer. Proceeds from the book, benefit The Colon Cancer Alliance.

Mark is also a former smoker. He has worked closely with the Centers for Disease Control and Prevention and was featured in this story on the CDC website. Mark also appeared in this CDC Anti-Smoking TV commercial:


Purchase Mark’s Book:

 

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