Justin Knauer was losing weight and noticed blood in his stool. A colonoscopy revealed “scar tissue,” but a biopsy was negative. A second biopsy two months later was also benign, and his doctor diagnosed him with Crohn’s disease.
Nearly a year after his symptoms began, Justin had surgery to remove the damaged part of his colon. When he awoke, he learned that he didn’t have Crohn’s disease at all. Instead, he was diagnosed with stage III colon cancer.
After chemotherapy, a PET scan revealed a recurrence on Justin’s lung, but with more surgery he is now NED (no evidence of disease). Justin says that quitting was never an option. He keeps putting one foot in front of the other, because that’s what he has to do to keep living.
So I guess this is what it’s like to feel old?! I’m not sure exactly how many times this phrase ran through my head over and over again the year of 2008. Having recently married, purchased my second home, found my dream job and started to plan a family, I just figured the way I was feeling was what normal 30 something year olds felt like!
Around September of 2008 things started to really change. I was eating right and going to the gym (trying to make up for all those things I did in my 20’s!) but I was tired all the time and was losing a considerable amount of weight. I was also starting to notice more and more blood in my stool. “Something is wrong” I said to my wife one day, and she urged me to call a doctor.
After a visit with a general physician in October, I had my first CT scan. There was some abnormal swelling near my colon so I had a second CT scan. After a very unprofessional secretary told me I may have cancer over the phone I decided to see a specialist. Looking back at it now, this unfortunate situation and example of poor bedside manners actually steered me in the right direction.
After meeting with a GI Doc in May of 2008 and describing to him my various symptoms, his diagnosis was Crohn’s disease. “We don’t typically see cancer in someone your age, but I have to tell you that there is a possibility” [for legal reasons]. The plan was to get me in for a scope and check out the damage. July comes around and I went in for my first scope. Turns out there was a considerable amount of “scar tissue” that prohibited my doctor from getting the scope more than a quarter of the way through my colon. He did however take a biopsy and the results came back negative.
August 2008. Hands down the worst month of my life. I started taking the oral steroid Prednisone in hopes that the steroid would reduce the swelling in my colon and also get my weight back up. I’m not sure if you’ve had the pleasure of taking Prednisone in large doses but it really tweaks your body out. Insane hunger cravings, acne, and night sweats are just some of the highlights! Now throw in having your wisdom teeth removed, a two week long business trip to ASIA, and your dog (best friend of 14 years) dying, and you’ll start to get a picture of where I was mentally.
At this point I should mention that this is where I really started to realize exactly how much my wife Laura cares about me. There is no chance in hell that I could have made it through any of this without her. I am certain that without her constant researching online, questions for doctors, juicing for hours at a time (yes juicing as in fruits AND veggies) and her sheer determination to get me back to being healthy, I would not be where I am this day.
As I headed back in for yet another scope in September, I had a gut feeling (pun intended) that something was really wrong. I tried to keep cool, you know, be the tough guy and all that, but inside I was freaked out. It didn’t help when my doc told me that he was still unable to scope the entire colon and my diagnosis was full on Crohn’s. At this point I should add that my doctor was all about treating aggressively and I am now so thankful that he was. His suggestion was to go in for surgery to remove the damaged part of my colon, the so called “scar tissue”.
So now it’s been a year of madness. It’s October of 2008, my wife and I visited a surgeon and she agreed that Crohn’s was the culprit. The crazy thing is that after poking me with her finger (you know where) in front of a room full of med students, she decided the best thing to do would be to remove my entire lower colon! A little too aggressive for me! So back to my previous GI doc we went. He got me scheduled for my third CT scan which ended up revealing that I had an abscess. I spent 3 days in the hospital having the abscess drained – not fun. After hearing about my not-so-pleasant meeting with the surgeon, my doctor recommended a second opinion.
After meeting with the new surgeon my wife and I agreed with her that a partial colectomy was the best thing to do. I’d go in, get the surgery, and start some kind of treatment for Crohn’s once I was all healed up. I mean, after all, at least I didn’t have cancer, right?!
December rolls along after a November of working my ass off to keep my mind off the fact that I’m somehow stuck with a lifelong disease. I had never been sick like this before in my life, yet for some reason in the back of my head I always knew that I would have to face something like this. Little did I know this was only the half way point!
The family flies out to visit and lend support, time is scheduled off work, DNRs and living wills are filled out – time for surgery! So this is where the story really gets weird to me. I wake up from surgery with my wife and mother standing over me, I’m in that drug haze, not sure what is going on and my wife tells me “you have cancer”. I think all I could say at the time was “what? I don’t understand”, which makes sense if you go back and re-read all the things that happened over the past year. Two biopsies, multiple doctors – still blows my mind to this day.
Here’s where I have to give a huge thanks to my surgeon who noticed that the “scar tissue” wasn’t that at all, who demanded pathology look at the “scar tissue”, who sat with me in the surgery room for an hour in case the “scar tissue” was a tumor so she could do what needed to be done instead of scheduling another surgery. Well I’m sure you’ve figured out by now that the “scar tissue” was a tumor. Cancer it was. Stage 3 since it had spread to 1 of 26 nodes.
It snowed a lot that winter, an apt metaphor for how I felt. Like the world had blown a giant snow drift of problems on top of me. How the hell am I going to dig myself out of this?
Late December I had my first appointment with my oncologist. He recommends that I get a PET scan and we discuss chemo options. My wife and I had planned on having kids and this whole chemo and cancer thing really threw a wrench into the works. There are not a lot of data on this particular chemo and how it affects fertility in males my age. So we came up with a plan: heal up from surgery, get the PET scan, go to Mexico, make a baby, come back, get a port and start chemo.
It was sometime around January when my PET scan came back clear of the cancer spreading and I had a shift in my attitude. Something I had needed for a long time.
For some reason I knew that I could fight through this, no matter what. Just keep pushing on. There is no winning in quitting or giving up. Obviously it helps that I was surrounded with great friends and a caring family, but I knew deep inside that what really mattered was moving forward and staying ahead of negative thoughts. Asking “why” and “what if” was not an option.
I’m not one to believe in so called “miracles” and I most certainly don’t believe in “faith”. That said, it was hard for me not to use those words when my wife and I found out that we had successfully become pregnant. Especially when you look at the fact that we had about a 3 day window to do so!
March. Off to Mexico. Some may say taking a trip mid-cancer is a little silly. To them I would say they have no idea how many times over the next 6 months I would shut my eyes and put myself right back on the beach with my wife at my side and my headphones on. My own personal shelter.
Back to reality. Port installed. FOLFOX in my veins. I delayed one infusion so I could travel back to Asia again. And then another so I could travel domestically for a couple weeks. For those of you keeping score, that’s over 30K miles traveled while on chemo.
At this point it’s around May 2009. My wife and oncologist are totally annoyed with me and it’s decided for me that there will be no more delays in chemo treatments.
The staff where I had my infusions were awesome. They were caring and careful. Understanding and thorough. A lighthouse in a thick fog. They helped me switch to FOLFIRI after three treatments due to the neuropathy from FOLFOX. The only way I can explain the feeling I had in the back of my throat anytime I drank something is how your hand feels when it falls asleep. A million needles. In your throat. FOLFIRI didn’t come with the nasty neuropathy, and to this day I am thankful every time I take a drink of cold refreshing water.
May 2009. We find out we’re going to have a boy! It’s also around this time I decide that I am going to build my first motorcycle, something I’ve always wanted to do and an opportunity that I could not pass up. Why let chemo stand in the way, right?
Something happened to me over the course of my chemo treatments. It’s like I was rebooted. I had a new drive. New motivation. And once September rolled around, chemo was over, my CEA level was normal, and it hit me -there is nothing in this world that can stop me. I don’t want to sound pompous or cocky, but to be honest it was how I felt. For a while. And then really hit. I was standing in the shower one day and it just all let loose. My first real breakdown. All the “whys” and “what ifs” finally poured over the emotional dam I had built in my mind. I let it all go. Some may say that I should have let it all go earlier but I did what I had to do. And to those who may be going through a similar situation I suggest you find what you need to do. Find that place deep down inside that we all have – the innate drive to carry on and move forward.
As I write this it’s December of 2009 and almost my one year anniversary of being cancer free. My beautiful son is almost 2 months old, my motorcycle is almost finished and I humbly move forward through this holy experience.
Update: Soon after completing this account of my adventures in cancer I found out the journey had yet to even begin.
Everything up to this point was written as part of an application process for the 2011 Colon Club Colonder – A calendar that celebrates young people living with Colorectal Cancer. (www.colonclub.com )
February of 2010 and I find myself preparing for another PET scan. It’s really difficult to describe what the days leading up to one of these scans is like. You’re either psyching yourself up for Christmas morning or a terrible car wreck. The anxiety is overwhelming. Yet somehow you just get though it.
The scan showed areas of activity in a section of my lung. This is a somewhat common thing and my oncologist was 99% sure it was nothing to be worried about. Given my history the plan was to have a scope, just to be sure.
Another round of funky drinks to digest and back to see the GI doc I went.
The biopsy results that came back from that scope are what every cancer patient has nightmares about – a reoccurrence.
I could see the words in my GI doc’s eyes as he entered the room.
Empty, cold, and alone with a high pitched ringing sound in my ear like I just got smacked in the head with a baseball bat.
Stage 4 Colon Cancer. This is my new title. There are no more stages after this.
The thing that scared me most at this point was more chemo. I’ll take a thousand surgeries before I let the poison steal another second of my life.
It’s this attitude that lead me to choose another surgery, and with my oncologist’s help we found a surgeon that would operate.
March 2010. Partial wedge resection of the right upper lobe of my lung.
It’s around this time that I discover, through a friend, a naturopath in my area who specializes in fighting cancer with nutrition and supplements. I’m game for anything at this point since during the past two years I didn’t want to learn about cancer. I didn’t want to know about nutrition. I didn’t want to know about anything cancer related. All I wanted was to deal with the disease and move forward. This is where my wife has saved my life for the second time. Her determination and tenacity, coupled with patience and the ability to teach, has shown me life in a new light. I must create an environment in my body that is conducive to its natural disease fighting abilities.
Literally days before my scheduled surgery my naturopath suggested that we opt for Functional Tumor Cell Profiling. Many pages could be filled with the pros and cons of this laboratory based series of test that, in a nutshell, show what chemo drugs a tumor reacts to and what drugs it does not react to.
Guess who’s cancer in his lung didn’t respond to any of the chemo drugs he was on?
With my new found interest in cancer and nutrition I realize that I fed my tumor what it needed to survive and spread to my lung. Again many pages could be filled with pros and cons and debates and research and blah, blah, blah. I know my body. I know what it feels like to have disease in me and no one can argue that. I beg anyone who is reading this to take a long hard look at what you eat and ask yourself, “What’s in this? Where did it come from? Is this really what my body needs? Or is this something engineered for me to crave?”. We’ve all heard the saying ”food is like a drug”. Think about it.
Some good news. I have been selected for the 2011 Colondar. I’m stoked at this point because I know there is some place that I can have my story documented and hopefully make an impact on someone’s life.
More good news. Healed up from surgery it’s time, again, for another PET scan. The results this time were “no evidence of disease”- NED as ‘they’ call it. NED is my new best friend.
June 2010. The 2011 Colondar photo-shoot happens.
Life Changing. There are a lot of things that I’ve digested and figured out how to deal with over the last couple of years but nothing could have prepared me for this 4 day Summer Camp for survivors, as I’ve come to call it. I wasn’t ready to face the world with my story until after this event. I truly know now how fortunate I am. I know I’m not alone. I know there are others out there who have gone through the same, and I know there is more to follow. I know that I have a story to tell and that with my new found group of brothers and sisters I can save someone.
July 2010. Humbly moving forward through this holy experience.