How to Survive, Thrive and Transform Through Colorectal Cancer
Are You Shitting Me?! is an irreverent, yet informational play-by-play of how to navigate, understand and plan for surviving, thriving and transforming through illness. Personal experiences of colorectal cancer are few and far between, and the subject itself seems more taboo than talking about sex. This book aims to break down those barriers to healthy conversation.
Ended
In the United States, colorectal cancer cases are on the rise, and the larges demographic for this recent uptick are millennials. According to the American Cancer Society:
● Millennials born around 1990 are two times more likely to develop colon cancer and four times more likely to develop rectal cancer compared to young adults in the 1950s.
● The rate of colorectal cancer has been steadily increasing among adults younger than 50 since the mid-1980s. Conversely, incidences of colorectal cancers have dropped for those over age 50.
● Young adults are more likely to be diagnosed with a late stage of colorectal cancer due to the perception by both young adults and doctors that they are not likely to develop the disease.
● Deaths from colorectal cancer for people younger than age 55 have increased 2 percent every year from 2007 to 2016.
● Colorectal cancer is the third leading cause of cancer-related deaths in men and women.
● Colorectal cancer is the second most common cause of cancer-related deaths in men and women combined.
● The lifetime risk for developing colorectal cancer is 1 in 23 for men and 1 in 25 for women.
● The number of new colorectal cancer cases estimated for 2020 is 147,950.
○ 104,610 new cases of colon cancer
○ 43,340 new cases of rectal cancer
Are You Shitting Me?! is an irreverent, yet informational play-by-play of how to navigate, understand, and come up with a plan of action for surviving, thriving, and transforming through illness. Regardless of the “type” of cancer you might have, this book promotes:
● Awareness of the rise of colorectal cancer and what you can do for prevention
● The importance of early screening
● How to advocate for your own health before, during, and after cancer
● Unique organizational tools to help you through your journey
● Reframing your brain and other coping techniques
● Thriving after cancer, including living with an ostomy and paying it forward
● A shitload of funny anecdotes (hey, humor helps, right?)
During my cancer journey, I went through radiation, chemo, and surgery, which resulted in a permanent colostomy bag, post-op chemo, and external lupus caused by the chemo. Don’t even get me started on jokes around being a “bag” lady. Having cancer was the scariest time of my life, and I wish I’d had someone to talk to openly about what I was experiencing. Are You Shitting Me?! is the inspirational,
informational, but oh-so-hilarious guide I wish I’d had before, during, and after my struggle.
The readers of this book are current cancer patients looking for resources and sufferers of colon diseases that increase the risk of colorectal cancer. Cancer affects almost two million people every single year. Colon diseases that increase the risk of colorectal cancer include colonic polyps, Crohn’s disease, and ulcerative colitis. In the U.S., an estimated: • One-third (1/3) or more of people will have at least one polyp on a routine colonoscopy by age 60. • More than 780,000 American adults have Crohn’s disease, which is usually diagnosed between ages 15-35. • Around 900,000 are affected by ulcerative colitis, the majority of which are ages 15-35 or 50-70.
As a former reporter and journalist, I find comfort in asking who, what, where, when, why, and how. With the answers to these questions, a news or feature story practically writes itself. But when I got cancer, at least half of the standard questions had no definitive answers—the when, why, and how. My story would not easily write itself. I would have to dig deep to piece it all together.
The problem solver and planner in me saw all sorts of gaps during my cancer journey that needed to be filled, like not having a clue about my health. Like not insisting on getting a colonoscopy or getting a second opinion when something was clearly wrong. Like a way to keep up with all that stuff—doctor appointments, treatments, what to do,
not to do, etc. (Heads up to the journal/planner for cancer patients you’ll see in the Marketing section.) Like insurance denying a scan my doctor ordered to see if the cancer had spread. Like finding out insurance would only pay for 20 colostomy bags a month (you do the math). Like realizing the financial strain of all the medical (even with
insurance) and nonmedical stuff, like gas cards and food for those who traveled to treatment. Like finding out the closest ostomy support group was at least 40 miles away. I knew where the gaps were not only from personal experience, but also from working for or consulting to health insurance companies the past 10 years.
During my journey, the advocate in me wanted so many things: to encourage prevention. To push lowering the age at which insurance will pay for colonoscopies as preventive screenings. To help those on the same or similar journey. To establish a local fund to help with some of the gaps, like providing gas cards, ostomy supplies, financial help for what insurance won’t pay, etc. To expand the local fund outward as
far as others are willing to take it. To start an ostomy support group. (I’m beyond excited to share movement on the latter.) I’m employing some of the same PR tactics I taught my students at my alma mater for over 10 years in my advocacy efforts.
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Part 1: The Struggle
Chapter 1: A Collective Pain in the Ass
It’s late at night, and I’m sitting in a hotel room with my dog, Bailey. We left the house and my 17-year marriage three days ago. My marriage had been under an incredible strain the past few years, with difficulties at work, Hubs’ health issues, the passing of his mother, and my cancer.
My body and mind are riddled with the stress of being in an increasingly toxic environment. My therapist calls it complex trauma adjustment disorder, which, according to Wikipedia is, “a psychological disorder that can develop in response to prolonged, repeated experience of interpersonal trauma in a context in which the
individual has little or no chance of escape.” My therapist says I’ve been in a constant flight-or-fight state for the past three years. This level of long-term stress takes a toll on your health in several ways:
● Your heart rate increases.
● Your body produces high levels of stress hormones (like cortisol).
● Your immune system becomes compromised.
● You don’t think the way you normally do; your thinking slows.
● Your blood pressure becomes elevated.
● Your eating habits change.
● You develop acid reflux.
● You experience chronic pain.
I had all the above, except the elevated blood pressure (thanks, Mom!). I left because I didn’t want to get sick (cancer) again, and it was becoming increasingly difficult to focus on work, which had been remote for the past five years. See third and fourth bullet above.
Like the best and worst times of my life, this experience is surreal. A friend suggested that the definition of surreal is, “God’s way of separating reality so we can deal.” Even as I sit here, disbelieving the boldness of my action and being scared shitless, I notice that the chronic, painful knots and spasms in my back are gone.
As if this isn’t dramatic enough, we’re all in the middle of the first coronavirus outbreak, and I’m thinking the only place better to be a magnet for said virus than a hotel room might be an airport.
For the past two days, after work calls have ended, I’ve gone out to forage for coveted toilet paper, paper towels, disinfectants, and non-perishable foods. I can’t even imagine how my friends in neighboring cities—Nashville, Mt. Juliet, and Cookeville—are navigating coronavirus and trying to rebuild just weeks after a tornado caused 24
deaths and massive damage to homes, businesses, and entire neighborhoods.
Tomorrow, I’ll leave this hotel and move into my apartment. My lifelong friend, Beverly, calls to check on me, but says she knows I’m okay.
“Because I’m a planner?” I joke.
“No, because you’re a fighter,” she responds.
And while it’s true I am a fighter, now we are all fighting. For our marriages, our jobs, our friendships, our time, our health, our sanity, even our lives.
It’s now been a week since I left the house. I just signed a year’s lease on an apartment, got new living room and bedroom furniture, and all that little stuff (like toothbrush holders and bathroom trash cans) you take for granted when living in an established household. I swear that if I catch the coronavirus from having to go Out There to get stuff, I’ll track Hubs down and exhale right in his face. I’ll return to the house tomorrow to get my dining room set and other personal effects, and the thought alone increases my anxiety and makes me sick to my stomach.
The few friends who know ask how I’m doing, or how I’m feeling. Mostly, I say, “I’m good.” Isn’t that what we all say? For me, that was my go-to phrase when I had cancer. I’m good. (I wasn’t good.) I didn’t think my friends wanted to hear how Girl With Ass On Fire from radiation treatments was really doing or feeling. And isn’t that how we operate in life? We go around asking, “How are you?” instead of “How are you feeling?” Wouldn’t that illicit a different, deeper, richer, more authentic response?
This week, I’m not fine. instead, I’ve been flooded with all kinds of emotions: frustrated at the timing and risk of all this (hello, #covid19), angry as hell (seriously, how much shit can one person take?), and incredibly sad (grief, failure, loss) that I couldn’t save my marriage.
That Wikipedia definition of complex trauma adjustment disorder was wrong about one thing, at least in my case: I have escaped. I couldn’t save my marriage, but I can save myself. As I told Hubs, this is about my health. Spoiler alert: I survived cancer. And I’m going to do everything in my power to not go through that again.
I see commonalities between the dissolution of my marriage and cancer, and even between the coronavirus and cancer. The dissolution of my marriage and cancer required organization and planning for things I could control and coping with the things I couldn’t. Some of the risks for getting cancer and coronavirus appear to be the same
(diet, compromised immunity, etc.). All three are traumatic. All three have changed my perspective and trajectory. I am a planner and a fighter. I am learning to protect and preserve my health, to practice self-care, and to protect my peace at all costs. I am learning to be a thriver.
It’s estimated that 40-50% of marriages in the United States end in divorce. Just as disturbing is the estimation by cancer.gov that over 38% of men and women will be diagnosed with some type of cancer in their lifetime. And now, every one of us has a chance at getting the coronavirus, which has spawned a unique trauma—post-intensive
care trauma—for those who have lived through the most severe cases. Before the coronavirus, I would have said the odds are ever in our favor, that the majority of us will suffer some type of trauma in our lives, but now, I say we are a world of traumatized people. I think the fear of getting coronavirus is traumatic.
The pending divorce and fear of coronavirus (FOC—how’s that for an appropriate acronym?!) feels like cancer to me, for all the emotions, but most of all, the exhaustion. I am so exhausted. Really, all I want to do is sleep and wake up and find this has all been a dream. But as Winston Churchill said, “When you are going through hell, keep
going.”
We’re all in this together. As hard as life is for me now, I keep repeating this mantra that I developed when I was literally battling my little behind off: I’m alive. This isn’t as hard as cancer. This isn’t as painful as radiation. It also isn’t all doom and gloom.
But, chances are that you or someone you know is experiencing cancer or some other type of trauma at this very moment, and I want to say: keep reading, because we’re going to navigate through hell with grace, inappropriate humor, and gratitude for every little thing.
However, for most of us, worrying about getting colorectal cancer is the furthest thing from our minds, right? Breast cancer? Sure. Lung cancer? If you’re a smoker, you bet. Heart disease? Check. But colorectal cancer? Surely, you’re joking. However, if you think you don’t need to worry about it, think again.
According to the American Cancer Society (ACS):
● Millennials born around 1990 are two times more likely to develop colon cancer and four times more likely to develop rectal cancer compared to young adults in the 1950s.
● The rate of colorectal cancer has been steadily increasing among adults younger than 50 since the mid-1980s. Conversely, incidences of colorectal cancers have dropped for those over age 50.
● Young adults are more likely to be diagnosed with a late stage of colorectal cancer due to the perception by both young adults and doctors that they are not likely to develop the disease.
● Deaths from colorectal cancer for people younger than age 55 have increased 2 percent every year from 2007 to 2016.
● Colorectal cancer is the third leading cause of cancer-related deaths in men and women.
● Colorectal cancer is the second most common cause of cancer-related deaths in men and women combined.
● The lifetime risk for developing colorectal cancer is 1 in 23 for men and 1 in 25 for women.
● The number of new colorectal cancer cases estimated for 2020 is 147,950.
○ 104,610 new cases of colon cancer
○ 43,340 new cases of rectal cancer
A 2017 study led by ACS scientists found that millennials and Gen-Xers (that would be me) are experiencing a “curious” increase in colorectal cancer. It’s not so curious when risk factors are compared to our generation’s lifestyles. We like our fast cars (as opposed to fast feet), fast food, and screens (TVs, laptops, tablets, phones, etc.).
A few things that increase your odds:
● You’re Overweight. Obesity increases the risk of colon cancer by 30 percent, according to Dr. Brian Clark, a gastroenterologist at Tufts Medical Center in Stoneham, Massachusetts. A study published in JAMA Oncology found the higher a woman’s body mass index (BMI), the greater her risk for early-onset colorectal cancer. Women with a BMI over 30, which is considered obese, have a percent increased risk! The increased rate in obesity and the increased rate in colorectal cancer among young adults runs parallel to each other. Not
surprisingly, unhealthy diet and sedentary lifestyle, which contribute to obesity, are also factors that increase the risk of colorectal cancer.
● You Eat a “Shitty” Diet. Too much red meat and processed food (especially hot dogs and lunch meat that contain nitrates) and too little fruits, veggies, and whole grains make for an unhealthy diet. Yet another reason to start paying attention to what you’re eating. “Fast” or easy isn’t better. While you can’t see the damaging effects in the moment, a week from now, or even a month from now, years of eating poorly will show up. And this is entirely preventable. (We’ll discuss some easy healthy habits later in the book.)
● You Get Too Much Screen Time. What do screens have to do with getting cancer? A lot apparently. Technology is great, but it’s made for a couple of generations of couch potatoes. All that screen time has us leading a sedentary lifestyle, which ups the risk for all sorts of diseases. I’m sure you’ve heard the phrase: sitting is the new smoking. Our bodies are made to move. We need to constantly keep food running through our bodies, consuming and eliminating properly. If you are sitting eight hours per day (or more), then you’re at risk of
developing all sorts of shit you don’t want to deal with. (Trust me on this.)
● You Smoke. You already know tobacco is bad for you. In addition to increasing your risk for colorectal cancer, once you have it, nicotine can also diminish the effects of radiation treatment.
● You Drink Alcohol. Yeah, yeah. I know: everyone drinks. But heavy alcohol use, which boils down to more than two drinks per day for men and one drink per day for women, is associated with colorectal cancer. If that’s not a reason to give up your nightly glass of wine, then I don’t know what is.
● You’re Genetically Predisposed. Like with most things, you can blame this one on your family. If you have a family history of colorectal cancer increases your risk for the same.
● You Have Other Shitty Problems. If you suffer from polyps, Crohn’s disease, or ulcerative colitis, chances are you will have an increased risk for colon cancer.
● You’re African-American. Don’t shoot the messenger, but race does play a factor in upping your risk for colorectal cancer. For example, African-Americans have an increased risk of early colon cancer.
Now that we’ve scoped the stats…
Know the Signs.
1. Bleeding from the gastrointestinal tract, resulting in dark colored stools or stools with bright, red blood
2. Bleeding from the rectum
3. Decreased appetite
4. Unintentional weight loss
5. Nausea or vomiting
6. Abdominal bloating
7. Abdominal cramps and/or pain
8. Change in bowel habits (several days of constipation followed by several days of diarrhea)
9. Persistent tiredness or fatigue
Now that you’ve waded through some pretty heavy shit here, there is a bright side. Colorectal cancer is “extremely treatable” if caught early. How early and how treatable, you ask?
● In the early stage of colorectal cancer, where the cancer is localized to the colon or the rectum, the 5-year survival rate is 90%! I’m not a doctor, nor do I play one on TV, but my oncologist says he’ll consider me cured when I’m cancer free for 5 years.
● If the cancer has spread beyond the colon or rectum and to lymph nodes, the odds decrease to 71%.
● The odds are least in your favor if the cancer has spread a fair distance, like to your liver or lungs, at 14%.
All the aforementioned stats paint a cautionary tail (haha). Millennial, because your age group is experiencing the biggest spike in colorectal cancer cases, you, in particular, need to be aware of the risk factors for colorectal cancer and know the signs that you may have colorectal cancer because colorectal cancer is “extremely treatable” if caught
early. This cautionary “tail” applies to anyone with one or more of the risk factors for colorectal cancer; however, anyone under 50 (45) may have a harder time convincing their doctor they need to be screened.
We’ve all heard the phrase, ignorance is bliss. My personal experience is ignorance is risk. Don’t be like me. I didn’t know the risk factors or signs of colorectal cancer, and I’m about to tell you how that turned out for me. I’m about to tell you the whole embare-ass-ing story because I want to save your ass. And not just your ass, but all the asses I can.
Shitastic Hacks (box of hacks where appropriate in each chapter)
● I’m a hacker, not of computers, but of life skills. One of the definitions of hack, according to Merriam-Webster, is a clever tip or technique for doing or improving something. My first hack on this journey was research; because trust me, there’s no owner’s manual for this (until now).
● I don’t believe everything I read on the internet; however, taking a few pages from grad school on research, if more than one source contains the same information or cites a reliable source, then that increases the validity of the information.
Shit You Should Know (box of takeaways at the end of each chapter)
● Ignorance is a risk. Not knowing the risk factors for colorectal cancer may increase your chances of developing colorectal cancer. Not knowing the signs of colorectal cancer could delay diagnosis and treatment for a disease that is “extremely treatable” if caught early.
● Behavior that puts you at risk for colorectal cancer. Don’t just know the risks; do your best to avoid them.
● Signs that you may have colorectal cancer. Don’t just know the signs; if you have any of the signs, get yourself to a doctor NOW.
● Be your own advocate. You truly are your own best advocate. If you are experiencing the signs that you may have colorectal cancer and are under 50 (or 45 if the ACS succeeds in getting the age lowered for which a first colonoscopy is recommended), you may be told you’re too young for a colonoscopy or that you can wait until you’re 50 (45). Insist on getting that colonoscopy posthaste.
Chapter 2:
Let’s Get this Shit Show Started
I don’t remember the first time I saw bright red blood in the toilet bowl or on the toilet paper after doing #2. (How’s that for an opening image? YOU’RE WELCOME.)
Although it didn’t hurt, I remember being scared the more it happened. Thinking about it now almost elicits a panic attack. I remember telling the Hubs and not getting much of a response, but I should have never used him as a barometer, because he’s not much on going to the doctor unless he’s literally at death’s door.
Hello pot, this is kettle. Seriously, I was my own worse barometer of my health. I prided myself on being like the Energizer bunny—I just kept going and going and going.
As a college student, I worked nights and weekends, took 18 hours of coursework, and edited the student newspaper. I’d typically skip breakfast, eat a candy bar and diet coke for lunch, work late, and eat whatever the hell I wanted for dinner (really late). I was 5’2” and about 110 pounds. I worked off whatever I ate and drank like a fish (hello,
being away from home for the first time). I also smoked my first cigarette as a college freshman because I was curious. Curiosity would become an on and off habit until just before my radiation treatments. At some point, I began to feel more tired than usual, tired enough to see a doctor. The doctor asked some questions, checked me out, and
then told me he had never seen someone who was just getting over mono on their own.
Fast forward a couple of years later to just after getting my B.S. in Mass
Communication and working in retail (hi, recession!). I wasn’t feeling so hot. Mom and Dad were coming over, and I was cleaning my apartment like a madwoman. My back was hurting, and I started feeling super nauseous. I thought it was the flu.
I trekked to the doctor who ran some tests and told me he didn’t know how I was even standing in his office. I had a kidney infection that was so bad he made me go immediately to the hospital. I would be there for a week with no insurance. It would take me two and a half years to pay all parties associated with that stay. My retail job offered insurance, and invincible 22-year-old me stupidly passed it up. Many years later,
I would pay close to $1,000/month for me and Hubs to have insurance. I would be “insurance poor,” a favorite term of my parents, for a couple of years.
Just a few years ago, I found myself at the doctor again, but not because of what had been smeared across the toilet paper. Instead, I was at my annual female checkup, something I had been doing since my early twenties (it never gets easier, amirite?). I’m a pretty modest person. I had just turned 49. With much difficulty, I told my doctor that
I had blood in my stool. She asked if it was a little or a lot.
I remember thinking: how should I know? Compared to what?
Instead of being concerned, she told me I could wait until I was 50 to get a colonoscopy. I remember feeling relieved. My doctor, whom I trusted, told me I could wait, so all was good, right?! My doctor said my insurance would pay for the colonoscopy at age 50 as a preventive screening. However, if I told the gastroenterologist that I was bleeding or went before age 50, it would be billed under diagnostic, which meant I’d have deductible and copay costs. And we’d do anything to
avoid extra costs.
I’m here to tell you that paying a deductible and copay would have been cheaper and more preferable than the story I’m about to lay on you.
Due to my work schedule, my next annual checkup was after I turned 50. I asked for a referral for a colonoscopy, as I was still bleeding. After a consultation with the gastroenterologist and some back and forth with our schedules, we landed on April 9, 2018. I will always remember this date, because it marks the start of my journey.
I was scared shitless about both prepping for the colonoscopy and the actual colonoscopy itself. I wish this were literally true, because then I would have been spared the prep work (ba-da-bing!). You may have heard that preparing, or prepping for a colonoscopy, is worse than the colonoscopy itself, and I can tell you from experience that is true. However, it is absolutely no reason to not get a colonoscopy if you need one.
Allow me to remove a bit of the mystery about the totally shitty prep if you are new to this. Following are Colonoscopy Prep Instructions from one of the four preps I had to do (yes, you read that right, and no, not because I am a fan). Four preps in the span of five months. How lucky am I?
Items you will need for your prep:
1. Dulcolax laxative tablets: These can be purchased over-the counter
2. MiraLAX (2 255-gram or 15-dose bottle): These can be called into the pharmacy or purchased over the counter
3. Gatorade (2 32-ounce bottles): Any color except red or purple (diabetic patients should use diet Gatorade, G2)
The day before your procedure:
Diabetic patients: Take only half of your usual diabetic medication in the morning. Do not take any more diabetic medication until after your procedure the next day. Also remember to mix your MiraLAX with diet Gatorade, G2.
No solid food at all: You can have beef, chicken or vegetable broth. You can also have plain Jell-O or popsicles (any color EXCEPT red or purple).
Clear liquids only: Gatorade, apple, or white grape juice, soft drinks (any color EXCEPT red or purple). You can also have tea or coffee but NO cream or milk. Sugar/artificial sweeteners are okay.
At 12:00 p.m. noon: Take 4 Dulcolax laxative tablets.
At 5:00 p.m.: Mix the first half of your prep. Mix 1 bottle of MiraLAX into 32 ounces of Gatorade. Drink 8 ounces every 15 minutes until gone.
At 9:00 p.m.: Mix the second half of your prep. Mix 1 bottle of MiraLAX into 32 ounces of Gatorade. Drink 8 ounces every 15 minutes until gone. You must finish all of the prep before bedtime. When you are finished with the prep, your bowel movements should be liquid and mostly clear.
Midnight: Do NOT drink anymore prep or any other liquids after midnight. At this point, you cannot have anything else to eat or drink until after your procedure the next day.
The morning of your procedure: NO FOOD OR DRINK AT ALL, not even water, gum or candy. If you normally take heart or blood pressure medication in the mornings, then take it with a very small sip of water.
MiraLAX disclaimer: While MiraLAX is deemed safe medication, there are potential side effects. These include, but are not limited to: nausea, vomiting, bloating, abdominal pain and/or diarrhea.
There are two parts to the prep which include the entire bottle(s) of MiraLAX. If at any time you become too nauseated or start to vomit, you can slow down the frequency of consumption. The prep schedule can be altered if you need to start earlier to allow more time to consume the prep. The goal is to have your stools clear to near clear.
Most patients will attain this goal while drinking the second half of the prep. Following the prep instructions is required in order to have your colonoscopy.
If you’re wondering if you can substitute better-for-you colon cleansing options to prep for your colonoscopy, the answer is no.
My colonoscopy was scheduled for 7:30 a.m. on a Monday. The Sunday before, I followed the prep instructions religiously. Just thinking about it makes me nauseous. I feasted on chicken broth, orange jello, white grape juice, and coffee. I bought popsicles, including some lemonade popsicles, but never ate them. At noon, I took the laxatives. Instead of mixing the shit-cleaner-outer cocktail twice, I made one big batch
and drank a cup every 15 minutes, eight cups each time, at 5 p.m. and 9 p.m.
I think around 3 p.m., the prep began working. My suspicions of being full of shit were confirmed by the time and frequency I spent in the bathroom cleansing my colon, from 3 p.m. to right up to the colonoscopy.
Through all four preps, I had this recurring thought: how in the eff does anyone survive prepping for a colonoscopy? Plain as day on the front of the MiraLAX bottle, it states, “[insert number according size of bottle] daily doses.” The daily dose works out to one cap filled to a line within the cap, or 17 grams. For prep, I took a total of 30 daily doses
over the course of six hours. Well, obviously, I survived. It wasn’t pleasant, but totally necessary. I didn’t just give you all the deets on colonoscopy prep to scare you, but rather if fear of the unknown has been holding you back from getting a much-needed colonoscopy, perhaps now you have a greater comfort (as much comfort as there can
be from this, right?!) level.
Once I got to the surgery center, I don’t remember anything between using the restroom one last time and waking up from the procedure. Friends said they got the best sleep during a colonoscopy. Maybe I did, too, but any R&R effects rapidly dissipated when my gastroenterologist said he had found something and he couldn’t say what it was. This was the beginning of my short denial interlude. I told my parents the colonoscopy showed something, but the doctor didn’t think it was cancer.
By Friday, I was back in my gastroenterologist’s office with Hubs. We were both nervous, having received the call that it was important he see me. It’s rarely good news that doctors want to share face-to-face. He handed me the report in an envelope marked “MRS. MULLINS!!” [pictures can be made of both the envelope and report or parts of the report] and summarized what the colonoscopy revealed. All I remember was the word “mass” and that I would need an ultrasound. He would not say cancer because he wasn’t an oncologist. He hugged me as we took our leave, which I thought was a bit unusual. As we were getting in the car to leave, I joked to Hubs, “That was the hug of death.” Hubs didn’t say anything, but his face turned white.
Hubs and a few of our best friends were the only ones to see the gastrointestinal pathology report. I have a master’s degree in Communication, and for the life of me, I couldn’t understand the report. My friend Amanda commented that any time the word
“carcinoma” is in a report, it isn’t a good thing. Hubs echoed the same sentiment. I was still in denial, but I was beginning to get scared. The report also contained words like “malignant glands” and “atypical glandular structures.” My gastroenterologist’s office was notified of the “malignant diagnosis” on April 17. The gastroenterologist scheduled
an ultrasound a week later.
That’s when my world changed forever.
Shitastic Hacks
● Schedule your colonoscopy on a Monday. Plan on taking off work that day for the procedure and to recover from being knocked out. It’s also damn near impossible, at least for me it was, to work while prepping, so save Sunday for colon cleansing.
● Practice deliberative shopping a day or two in advance of your colonoscopy. There are some yummy clear juices, like grape or peach-grape, and other items on the what-you-can-eat/drink list for colonoscopy prep to make the process a little more tolerable. Conversely, there are also some really disgusting items on the what-you-can-eat/drink list, like Cherry Glacier Gatorade (sorry, not sorry
Gatorade). I thought it would be a great idea because it sounded good, and it was clear. I used it as part of the shit-cleaner-outer cocktail on a later prep, and it made me puke. It could have been the process itself, but I will never know. Once I get sick after eating or drinking something, it crosses over to the great not-eating-that-again land. Regardless, the ONLY time I feast on clear grape juice, chicken broth and orange jello is when I’m prepping.
Shit You Should Know
● Yes, prepping for a colonoscopy is not a pleasant experience, but you will survive.
● Don’t let fear of prepping for a colonoscopy or fear of the procedure keep you from getting a colonoscopy if it’s time for your first one or you have any signs that you may have colorectal cancer (see Chapter 1).
● If your gastroenterologist wants to see you to discuss the report from your colonoscopy, pay attention and take notes. Even if a friend, family member or significant other (SO) is with you, shock and/or denial may rob or alter your recollection of the conversation.
Chapter 3:
How Not to Find Out You Have Cancer
With my first colonoscopy behind me (seriously, I crack myself up!), I thought the ultrasound would be easy peasy. I had an ultrasound on my left breast the previous year after my annual mammogram showed a spot that looked suspicious. It was like all the ultrasounds I had ever seen on TV or at the movies of a pregnant woman seeing her baby for the first time, only I was praying that spot was a cyst and not cancer. We couldn’t get a good enough looksie to make that determination, so the doctor would have to take a biopsy of that spot.
There are two types of breast biopsies - needle and surgical. Mine was a needle biopsy, which involved plunging a needle deep into my boob. Even though I received localized anesthesia, it hurt like hell. Thankfully, the suspicious spot was a cyst. A few days later,
when it came time to remove the bandage, though I was careful, the bandage took some skin with it. Also painful, and I couldn’t wear a bra for about three weeks afterward. We put a man on the moon, but we can’t make surgical tape that doesn’t also remove skin?!
You might be thinking what does an ultrasound and biopsy of my boob have to do withan ultrasound of my ass? You’re about to find out, but first, let me offer the 10,000-foot view. I like to think I’m pretty smart. I have a master’s degree in communication (ok, not quite rocket scientist, but not average, either). Growing up, my parents would say I
had book sense, but not common sense. As I navigated through a potential breast cancer scare and initially through actually having colorectal cancer, I had no sense. Seriously, neither book nor common sense. I’ll go a step further and admit that I had no “health sense” (remember, you first saw that term in this fab book).
I could have (and should have) researched breast biopsy procedures before actually having the procedure and same thing with the ultrasound of my ass. Butt (hehe), I didn’t. In both instances, I was scared and embarrassed and really not wanting to deal with reality. If I had good “health sense,” I would have researched each procedure prior to having it done. Not only would I have been less scared and embarrassed, I would have been more engaged, instead of feeling like a victim, like these things were happening to me, and I had no control over any of it.
The ultrasound of my ass was originally scheduled for May 14, but my
gastroenterologist wanted to get me in sooner. The doctor who would perform the endorectal ultrasound (ERUS) wanted to do it ASAP. So, two weeks after my first colonoscopy, I got to experience the joys of prepping for the ultrasound, which is just like prepping for a colonoscopy. Prep #2 if you’re keeping count. The ultrasound would
allow the doctor to gage the depth of the mass and how to treat it. If he could remove it, he would. I truly wish it had been that simple.
The ultrasound was scheduled at a hospital in Nashville, one of two trips to Nashville from Murfreesboro we made during this whole ordeal. We were truly fortunate to have a top-notch medical team and hospital in our hometown. Hubs and I came seriously close to not making it to Nashville or anywhere that morning. Nerves affected his
driving, which made me nervous, and we ratcheted each other up to the point that he pulled off the interstate. I can’t remember if I drove the rest of the way to the hospital.
Once in the room where the ultrasound would be performed, I looked around at all the odd equipment and realized this wasn’t going to be like the ultrasound you get when you’re having a baby or getting checked to see whether that spot in your breast is a cyst or needs a biopsy to be sure. This ultrasound was more like an alien anal probe,
but with anesthesia. An endorectal ultrasound is literally a procedure where a probe inserted into your rectum enables the doctor to see your rectum on a TV screen.
Here’s how not to find out you have cancer: right before they knocked me out, I asked the doctor, “Is it cancer? Do I have cancer?”
He simply said, “Yes.”
When I woke up, I stared at a clock. The first thought I had was, “Wow, that was fast.” And then I realized, I have cancer. I seriously hate crying, but I couldn’t stop the tears. The doctor was talking to my husband just outside the waiting room, and I didn’t know that he saw me crying as they were wheeling me back to yet another room.
The ultrasound report was sent to the oncologist the next afternoon. I would see the report during my first appointment with the oncologist a week after that. Never before or after cancer have I had doctor appointments scheduled so quickly.
The report indications were for “pre-treatment for anorectal carcinoma.” The ultrasound found a “fungating” non-obstructing medium-sized mass in the “distal” rectum measuring five centimeters in length and a “hypoechoic” mass in the rectum at one centimeter from the “anal verge” measuring 12 millimeters in maximum thickness.
“There was sonographic evidence suggesting invasion into the muscularis propria (Layer 4) without breakthrough into the perirectal fat.”
“A tissue diagnosis was obtained prior to this exam. This is consistent with adenocarcinoma. This was staged uT3 uNO.”
I was no longer in denial, but I was also no closer to understanding medical-ese. My oncologist would tell me I had a Stage 3 cancerous tumor the size of a ping-pong ballfive centimeters from the outside of my body.
The ultrasound report also included pictures of the tumor, a disgusting gray mass in an otherwise healthy looking sea of tissue and fat.
This was all becoming real, even though it felt like I had been suspended in an alternate reality. I had cancer, and it was a cancer no one ever discussed. I had cancer, but I was still alive. I had cancer, but I didn’t know what to do.
I had cancer, but I had an opportunity to fight.
I knew my doctors would help me fight with chemo, radiation and surgery. They would do their part, but I would need to do mine. I decided I was going to arm myself with information. Most importantly, I was going to use that information to develop health sense. Unlike the breast needle biopsy and probing ultrasound of my ass, I would not let the chemo, radiation, and surgery just happen to me. I would research and ask questions.
Some folks think a person is born with common and/or book sense and that common sense can’t be taught. But no one is born with health sense (and I’m not just saying that because I coined the term), but it can be developed. Health sense is more than just being informed; it’s about using information to modify behavior in order to get through a health crisis and to prevent an initial or recurring health crisis. That’s just what I did and continue to do, and lucky you, you’re getting the notes.
Ideally, I should have cultivated health sense when I first saw bright, red blood in the toilet bowl (here’s your sign!). I did research “blood in stool” online, and more than one source indicated that it could be a sign of colorectal cancer. On WebMD, it was listed sixth out of seven causes, behind diverticular disease, anal fissure, colitis, angiodysplasia, and peptic ulcers and before esophageal problems. Other sites listed hemorrhoids as the leading cause. In short, blood in stool indicates bleeding somewhere in the digestive tract. You already know what I did with this information from the previous chapter. I asked Hubs, didn’t want to be a hypochondriac and waited until my annual checkup to discuss my concerns with my doctor.
Here’s what I should have done: I should have gotten by ass over to the doctor immediately and insisted on a referral for a colonoscopy, and if I didn’t get one, then I should have gotten a second opinion. It’s totally easier to blame my doctor for what happened, but I share at least some responsibility.
I started cultivating health sense the moment I realized I had cancer. Ok, maybe it was a few minutes after, accounting for the shock factor. Here’s my step-by-step:
1. Research. I researched colorectal cancer and preventing and treating colorectal cancer online. I asked my doctors if there was anything I could take, eat or do to slow, stop or destroy the cancer.
2. Write it down. A former reporter and editor, I usually have pen and paper on me. I’m an avid note taker, because it helps me remember. The first colonoscopy, talking with the gastroenterologist, and the ultrasound process are recorded on scraps of paper. I had pen and paper when I first met with the oncologist. That’s when I finally got serious about the challenge ahead.
3. Act on research. Per my doctors, I didn’t take supplements during treatment (I’ll explain in a bit.) I stopped smoking in order to maximize the radiation treatments. I made sure to eat foods high in protein. I followed ACS dietary recommendations.
4. Share results. Modifying behavior is hard. Sharing what you’re doing (like losing weight) with friends, family and/or doctors promotes accountability. I also like to share my research and how I employ it to help others.
The steps for cultivating health sense are cyclable and apply to ass and other types of cancer, as well as to other health crises. I applied the Research - Write - Act - Share steps to cultivate health sense during diagnosis, treatment and transformation.
I would have preferred for the gastroenterologist to have told me I had cancer when he sat me down to go over the report from the first colonoscopy, instead of finding out before being knocked out for the alien anal probe. He couldn’t tell me because he’s not an oncologist, which is all kinds of ridiculous. Is there really ever an ideal way to be told you have cancer?
All kinds of thoughts and emotions went through me and my life changed forever when the reality that I had cancer pierced through my shield of denial. Mainly, I could die. Is this it? There’s so much I have left to do.
I never wondered, why is this happening to me? Or thought, this isn’t fair. I’m a realist. Getting bogged down in the unfairness of life is not productive. I’ve always been grateful, but cancer had me thinking maybe I wasn’t grateful enough. I became grateful just for being alive.
That I didn’t take any prescription drugs or have any major health problems at age 50 was a source of pride. I joked with friends that I passed all these aging rites of passage and went straight to the Big C.
I became focused on surviving cancer and I no longer worried about the cliched little things. At one point B.C. (Before Cancer), I worked two full-time jobs, bought a house, got married, and got a dog. My mantra became, if it’s not on fire, it can wait. I added this mantra to my surviving cancer playbook.
I began to prepare mentally and emotionally to step into the ring for the biggest fight of my life - the fight for my life.
Shitastic Hacks
● Develop and use health sense to better power yourself through cancer and beyond.
● If you have to travel for a procedure that involves colonoscopy prep, you might want to wear disposable undies and take an extra pair. This needs no further explanation.
● Make sure the person taking you to said procedure is capable.
Shit You Should Know
● Ain’t no shame in shedding tears or whatever reaction you have to hearing, really getting the fact that you have cancer.
● You are now #1. This means getting better takes top priority.
● If it’s not on fire, it can wait.
● An ultrasound of your colon and/or rectum is not the same as an ultrasound of your boob or baby.
Hi, Friend!
It's been a hot minute since my last Are You Shitting Me?! How to Survive, Thrive and Transform through Colorectal Cancer update. I've gone …
Hi, Friend!
It's been a bit since I updated you on the progress of my book, Are You Shitting Me?! How to Survive, Thrive and Transform …
Hi, Friend,
Just a quick update. I'll get a first peek of the website in a couple of weeks and will share when it goes …
Hi, Friend,
The pre-order campaign for Are You Shitting Me?! on Publishizer has ended. Thank you so much for your support! So, what happens next? …
Thanks, again, for your support and pre-order! I wanted to share some behind-the-scenes news. This morning, I sent a press release about our campaign to media …
You will always be one of my favorite people in the entire world! You might not be so glad about it, but I am so glad I found you, and I love you!
Thanks, war buddy, lol! Anyone who knows you is glad to have found you!
Thank you!
One thing is for sure, don’t ever under estimate you. Every time I read your post, I see that you have once again conquered what ever adversity that has come your way. I admire you and what you have done to make yourself even stronger as you walk through this journey.
Many hugs, Rebecca Covert
Thanks so much for the kind words and pre-orders! I could not have made it through without faith, family and friends like you. Much love!
Can’t wait to read and share this book!
Thanks so much for your pre-order!
Congratulations! You are awesome! Love ya friend.
Thanks so much for your pre-order and kind words. Back at you, warrior!!!
Kim is such a smart talented person. Can’t wait to read her clever book!
You are way too kind! Thanks so much for your pre-order, warrior!!!
Thank you for sharing your story Kim, about such an important topic. Your writing has been such an inspiration to myself and countless others throughout the years, I can't wait to read your story!
Thanks so much, Sweet Friend, and for your pre-order! Mutual admiration and inspiration!!!
I just ordered my copy. I am excied for you!
Thanks so much!!! Catch up with you soon!!!
Proud of you!! Love you!!
Back at you, fellow warrior!!!! Thanks so much!!!
I'm so proud of you, my friend! You did it! Much love and light always!
💜Klaudya
Getting there, thanks to friends like you! Thanks so much, and yes, much love and light always!!!!
I'm so proud of you!
Awww, thanks so much for the kind words and pre-order! Proud of you, too! We sure have been through it!
You are amazing!
You are way too kind! Thanks so much for your pre-order, my creative friend!!!
You inspire me. I’m so thankful you are my friend, no shittin!!
OMGee! You crack me up! You inspire me, as well. We both have walked through some shit, haha! Butt, we are on the other side. Thanks so much, sweet friend!
So proud of you for sharing your journey in order to help so many others! Keep being YOU!
Tina <><
Thanks so much for your pre-order and support! Helping others makes talking about it a bit easier. I truly believe that's part of the reason I'm still here!
I can’t wait to read your story!! xo
Thanks so much and for your pre-order, sweet friend! Miss you! Let's catch up soon.
Thank you Kim for sharing your story for others ❤️
Adam
Thanks so much for your pre-order and support! Let’s catch up soon!
Love you friend. I will share the extra copies with others, including the head of Colorectal Surgery at VUMC. Thank you for getting the word out. And thank you for being my friend! (I just sang that last part to you.)
Love you right back and thanks so much! Your bonus journal/planner, that is free with 5 pre-orders, is tailored for those going through cancer, fulfilling a need I discovered while going through it myself. I can hear you singing to me, lol!
So proud of you and the super human you are always here for you
Thank you so much for your kind words and pre-orders! I learned my super human powers from you, sweet friend and best lifelong mentor. Excited to share the bonus journal/planner, that is free with 5 pre-orders, with you. I'll always have your back and likewise here for you!
Beyond proud of you Vortex Sista!! You are an inspiration!! ❤️❤️❤️
Hi, Beautiful Inside and Out! Thanks so much for the kind words and your pre-order! Miss you, VS!!!
Proud of you friend! #thrive #kicka$$takenames
Thank you, Sweet Friend, and thanks for your pre-order!
I’m so proud of you Kim and everything you are accomplishing, well done my friend!
And I'm so proud of you, war buddy! Thanks so much for your pre-order and all that you do to get the word out!
<3 <3 <3!!
Thanks so much, Sweet Friend! Back at you!
SO excited for you!! I think it is awesome that you followed through with your idea!! Love your enthusiasm, perseverance and most of all you!! Congrats girl...I can hardly wait to read it!!
Thanks SO much for the kind words and your pre-order! You've been on my mind a lot these past few months. I've also been craving a trip to Pigeon Forge. We had such fun shopping! Miss you! Thanks, again!
Kim,
On this special day, in remembrance of Jeff, I am sending hugs and love my sweet friend.
Charlotte
Thanks so much, my sweet friend, and for your pre-order. He thought so much of you.
Can't wait to see all the great things that come from your amazing talents, vision and passions. Your loving nature, caring heart and passion to help others is shining through on this project. Wishing it and you all the best.
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on March 23, 2021, 1:12 a.m.
Congrats Kim. This is awesome. I look forward to reading your book.
on March 23, 2021, 2:15 a.m.
Thanks so much, Jim!