Why I Will Lose My Fight Against Cancer

          Many people don’t like the phrase “(So-and-so) lost their fight with cancer”. They want to say cancer never wins. Sometimes it doesn’t. If you’re lucky enough to catch it early, and get good medical treatment you can beat it. For those of us who aren’t lucky like that, cancer will win. It’s just that simple. What bothers me is the idea that if you lose the fight you’re a loser and a failure. That’s just not true- just ask the Spartans about Thermopylae. Losing isn’t always failure. If a baseball player “fails” to get a hit 7 out of 10 times, he’ll end up in the Hall of Fame. I believe that even if you know you’re going to lose a fight, that doesn’t mean the fight isn’t worth fighting. Sometimes knowing you’re going to lose, the fight becomes more important, and the reasons to fight become clearer. I have stage IV colon cancer and I fight every day.

I fight because I want to live.

I fight for my wife.

I fight for my family.

I fight because I want to see Paris again.

I fight because it’s a fight worth fighting.

                                    I fight because I want to live.

There will come a time when my fight will be over; when I will lose the fight. For me, that’s inevitable. I’m okay with that- or as okay as I can be. Don’t get me wrong I’m not happy about it. I’m sad and mad about it on a daily basis. I look at it like Rocky Balboa did in the original Rocky. Near the end of the movie, the night before the big fight between Rocky and Apollo, Rocky and Adrian are in bed, and Rocky tells Adrian that he knows he can’t beat Apollo. She tells him that he “worked so hard”, and he tells her that it doesn’t matter. Then he says:

      …'Cause I was thinkin', it really don't matter if I lose this fight. It really don't matter if this guy opens my head, either. 'Cause all I wanna do is go the distance. Nobody's ever gone the distance with Creed, and if I can go that distance, you see, and that bell rings and I'm still standin', I'm gonna know for the first time in my life, see, that I weren't just another bum from the neighborhood.

            That’s what I plan to do with cancer- go the distance. The difference between Rocky’s fight against Apollo and my fight against cancer is that people fight cancer every day. I just want to add my name to the (unfortunately) ever-growing list. While I won’t be physically standing at the end of the fight,

I’ll know I’ll have given it everything I’ve got.

I’ll know.

My wife will know.

My family will know.

The cancer will know.

            

 Stuart Scott, the ESPN anchor who died of cancer of the appendix said, “You beat cancer by how you live, why you live, and the manner in which you live.” Just because I’m going to lose my fight against cancer, that doesn’t mean I failed or a loser, and it doesn’t mean that it’s not a fight worth fighting.           

My Cautionary Tale

           April 3^rd, 2014, after a colonoscopy, is the first day the word tumor appeared in my life. A week later it was confirmed through the results of the biopsy done during my colonoscopy that I had colon cancer. Then came a “routine” CT scan of the pelvis and abdomen. That scan showed I had stage IV colon cancer; the cancer had spread to my liver with over 40 lesions there- as my oncologist would tell me later, “Your liver was more disease than liver.” Within the month I had a port surgically implanted in my chest for chemotherapy, and I began the first of what is now 132 chemotherapy treatments and counting. As of this writing it’s been 5 years since my diagnosis. Statistically only 14% of people diagnosed with stage IV colon cancer live that long (though that number seems to be growing steadily, if slowly). Some people celebrate their “Cancerversary”- the date they were diagnosed. I’d rather not give cancer top billing- it takes so much as it is, why give it that too? Living 5 yeas with this disease where the median average survival rate is 25 months (I’ve now made 60) has given me a lot of time to think about how I got here. How did my life get so fucked up? Am I to blame for what happened to me? Why did it happen to me? Were there signs I missed? Ignored? The simple answers are cancer, yes, bad luck, yes, and yes. However those simple answers are not why I’m writing today. I’m writing today so you can see that what’s happening to me could have been prevented- I could have prevented it, if I had spoken up sooner and not ignored the signs. Colon cancer is preventable if caught early enough. Maybe after reading this some of you will know what those signs are and speak up and prevent yourself from getting it.

            About 10 years before my diagnosis (give or take a year or 2) I noticed bleeding when I had a bowel movement. This went on for a while until one day I saw a lot of blood in the bowl. That scared me, so I called my Dr. and made an appointment. After examining me, he told me that it was hemorrhoids and nothing to worry about, and that we could treat it. This was my first rectal exam, and like most people it was not my favorite experience. So thinking it was nothing dangerous I went about my merry way. As time progressed the bleeding happened more often to where it was happening pretty much every time I went to the bathroom. The bleeding wasn’t just when wiping, but sometimes there was blood in the bowl, and in my stool. All of this was pointing to a larger problem that I was ignoring.

            I was ignoring it by telling myself “It’s only hemorrhoids” and “it’s not anything serious”. Also, I didn’t want another rectal exam. A Dr. would ask me if I was bleeding when I went to the bathroom and I would say no. Yup, I lied to my doctors. I just put my head in the sand, which of course left my ass in the air. I lived with this, and ignored it for the better part of a decade, until March of 2014 when I complained of constipation to my Dr. and he sent me for a colonoscopy (which I have previously detailed here). I finally listened to my body and to what it was trying to tell me for years. Unfortunately, by that time it was too late for me. It went from something that could be cured if caught early enough to something that was going to kill me. Don’t let it be too late for you. Listen to your body. Get checked if something is wrong- if there’s blood in the bowl when you have a bowel movement (especially dark blood), if your stool is tarry black and/or has blood in it, if there are changes in your bowel habits. See your doctor. Get screened. One bad night of preparation for a colonoscopy or one rectal exam is far better than any day of chemotherapy and if you’re like me, a stage 4 death sentence.

            People have told me I’m an inspiration because of the way I’ve handled having cancer. A dubious honor I would rather never have. I handle it the only way I know how, because of who I am. Cancer changes you in many ways, steals many things from you, but it doesn’t change who you are. Please take my word for it- don’t test the theory for yourself. I’m not someone whose footsteps you want to follow. Mainly because the amount of footsteps I have left are a lot fewer than I, or anyone would like. I know I’d like more, but I know I’m not going to get them. Make sure you get as many as you can. I’m not an inspirational tale; I’m a cautionary one.

Back To The Beginning

So the PET scan last September showed 2 lymph nodes in my retro peritoneum starting to exhibit signs of metabolic activity. In other words, the cancer was starting to grow there again. These lymph nodes are located about 2 inches below my sternum towards the back of my torso. The good news was they were not near any major arteries or organs. The bad news was these can’t be gotten to surgically. With my CEA also slowly rising- it was up to 2.4 at this point- my oncologist put me back on full chemo. This consisted of Vectibix with Irinotecan. My treatment schedule was 3 weeks on and one week off. This was brutal because the Irinotecan added a whole new set of side effects in addition to the Vectibix side effects. The biggest of these were GI complications and even greater fatigue. The three weeks in a row had me out of commission for 4-5 days each of those weeks. It was getting to be a bit much. On top of that my CEA was still slowly, but surely climbing. By the time it hit 3.0 in December, my oncologist ordered another PET scan. This time there was only one enlarged lymph node in my retro peritoneum, but it had grown and was fully metabolically active. Also, there was a new lesion on my liver. We immediately stopped the Vectibix and Irinotecan and went full Vizzini from The Princess Bride; when things wrong, you go back to the beginning. For me, that meant going back on Folfox (Oxaliplatin, Leucovorin and 5FU).

In the good news/bad news reality that is chemotherapy, the rash, splitting skin on my fingers and infected nails would go away since I’m off the Vectibix, but constipation, greater nausea, thinning hair and cold sensitivity were next up from the Folfox. I still had to be on the steroids and antibiotics that were helping with the Vectibix side effects for another 6 weeks, but then I could stop the antibiotics, and start to wean my way off the steroids; that should lead to me losing some of the 20 lbs. I put on while taking them. Of course losing weight as a cancer patient can be unsettling because it’s a good indicator that the cancer is growing. My oncologist told me that I should lose the weight I gained while on the steroids and be back at my old weight with no worries. If I got below my weight prior to the steroids, then it would be time to worry.

This new treatment meant the return of the hated 5FU pump. After my infusion in the office I was sent home with a pump attached to the port in my chest that has the 5FU in it for 46 hours. Then I went back to the office to get disconnected. The disconnection has the effect of air being let out of a tire. The physical exhaustion can be overwhelming. Another “plus” of Folfox is that the treatments are every other week, so I hope I’d have more time and energy to do things. I was scheduled to get 4 sessions of this treatment, and then have a CT scan to see if the lymph node and liver lesion had shrunk, or hopefully, been eradicated. If it worked, we would keep going with either more treatment (if it only worked partially), or maintenance, if the cancer were eradicated.

I didn’t make it to the fourth session. By the third treatment, my CEA had gone up to 6.8. Seeing this my oncologist ordered the CT scan early. Again we had good news/bad news. Good news- the lesion in my liver was gone. Bad news, there were more lymph nodes that had grown in my abdomen and now there were 3 nodules in my lungs. Here’s some irony; they could get rid of the lesions in my lungs with RFA like they did a while back for one in my liver, but, in order to do it the lesions have to be at least 1 cm, where the biggest one was only 7mm. The lymph nodes in my abdomen are bigger than 1 cm, but they’re in a place where they can’t get to them. er’s some ironySo for them to help me with the nodules in my lungs my cancer has to get worse.

All this was incredibly disappointing. I didn’t stop Folfox four years ago because it stopped working, I stopped it because I became NED and we wanted to have this in my back pocket so when all other chemo options stopped working I could go back to it. Unfortunately the latest recurrence was resistant to my back-up plan. Pretty devastating news. My oncologist said I should try Lonsurf, which is a chemo pill. I am wary of chemo pills since my Adventures in Xeloda in 2015. However, I was assured that Lonsurf doesn’t have the same side effects as Xeloda, and from what I’ve heard it’s supposed to be one of the “easier” of the chemo regiments as far as side effects go. I hope so. I also hope it works, because with each new chemo treatment I don’t know if it’s going to be effective or not, and I’m running out of options. I’ll be on these pills for 3 months and then another scan. The oncologist told me that I shouldn’t expect to see any positive results for 2 months. Time to get serious about looking for clinical trials. First up, an appointment at Moffitt Cancer Center in Tampa this Friday to see what they have to offer. It’s all a lot of wait and see. 

125

How many things have you done 125 times? I’m not talking about things like eating, using the bathroom, and going to school and work. I’m talking about things you do, and do deliberately. I think I may have been to the movies 125 in my life, and I’ve been dancing 125 times. Other than that it’s really hard to come up with something I’ve done 125 times- except chemotherapy. When I mention that I’ve had 125 chemo treatments, people invariably joke, “But who’s counting?” Well, I am. I’m counting because when I’m feeling like shit, or unable to do something simple like go out to a movie with my wife, or hang out with friends, or cook dinner, or fold laundry, remembering that I’ve had chemo 125 times reminds me to give myself a break. It reminds me that I’m going through most people’s worst nightmare, and so far, I’m doing okay. It reminds me to be a little gentler, and kinder to myself. Does it always work? Honestly, no it doesn’t. But I’m working on that.

There are a great many things that people aren’t familiar with when it comes to chemo. First, as soon as you start chemotherapy you feel sick- the side effects are pretty much instantaneous and vary with different treatments. The severity of the side effects also depends on the treatment and the individual. Once you start chemo there isn’t a day that goes by that you don’t feel the side effects; in addition to having cancer, you feel sick in multiple ways all the time. Each time you start a new chemo regimen you get a different set of side effects. Some overlap- just about all of them causes nausea and fatigue, and the effects are cumulative.

I’m often told I “look good” or that I don’t “look like what a cancer patient looks like”, or at least what most people think a cancer patient should look like. My hair has, at times, thinned, but never completely (thankfully) fallen out, and I’ve been on steroids for the last year and a half so I’ve gained 20 lbs., not lost weight. I’ve had a pimply rash for about a year and a half, cuts on my fingers where the skin has split, and infected nail beds, but nobody really sees those and thinks “cancer”. While I may not look like what most people expect when they think of someone who has cancer, I am here to tell you I am exactly what someone who has cancer looks like.

Unfortunately most people get their “knowledge” of living with cancer from movies and TV. These are horrible sources for the reality of living with cancer for an extended period of time. Stereotypically, in a movie, the person gets cancer, loses their hair, loses weight, and either dies in 6 months, or is cured and lives happily ever after. And they do it all within a 2 hour runtime. In my reality it’s been over 1,700 days that I’ve been undergoing chemotherapy, and I’ve felt sick since the first day of the first infusion. I did have a 3-month break from chemo February 2017– May of 2017, but in that time I got severe pericarditis, and had an incisional hernia repaired, so that “break” was not a time when I was feeling particularly well.

When I discuss chemo and it’s side effects with people, it’s usually 1 or 2 side effects at a time. A common response is, “Well, it’s keeping you alive, so I’m okay with that.” Nice to know that other people are okay with me suffering side effects. Snark aside, I understand that people are happy that I’m alive, and they see side effects as a “small price to pay” for not dying. The truth is there isn’t a time where it’s only 1 or 2 side effects that are affecting me at any one time. I’ve come up with a list of the side effects I have suffered during the last 4 years and 8 months. Not all of them are from chemo. Some of them are from the medications taken to help alleviate the side effects from chemo, and some are just things that you get from having cancer. While I don’t have all of these side effects at the same time, on any given day there are at least a half dozen of them that I do have.

• Anxiety
• Frustration
• Anger
• Mood swings
• Nausea
• Fatigue
• Chemo Brain
• Depression
• Hair Loss
• Vision changes
• Compromised immune system
• Surgery
• Cold Sensitivity
• Shortness of Breath
• Bleeding gums
• Bloody nose
• Body Aches
• Cramping
• Headaches
• Neuropathy
• Mouth sores (Thrush)
• Chapped lips
• Change in taste
• Dehydration
• Feeling sick
• Diarrhea
• Mucositis of the urethra
• Low testosterone
• Lactose Intolerance
• Changes in appetite
• Changes in food tolerance
• Constipation
• Anal Fissure
• Sore Ass
• Moisture Associated Dermatitis (M.A.D. Ass)
• Rash
• Acne
• Sweating
• Itchiness
• Weight Gain
• Infected nail beds
• Dry skin
• Cracked skin with cuts
• Insomnia
• Flatulence
• Thinning hair
• Long eyelashes
• Spending most of the day in the bathroom.
• Spending most of the night in the bathroom.
• Needing to know where a bathroom is before I decide to go someplace.
• Not being able to go someplace because I won’t make it there before I need the bathroom.
• Missing a meal in a restaurant because I’m in the bathroom.
• Having to find someplace that has a bathroom while driving because I won’t make it home in  time.
• Having to turn around and go home because I won’t make it a full evening out.

Just because these side effects are unseen, doesn’t mean they’re not there. Living this long with cancer is something that’s unfamiliar to most people (me included). Once again I’m lucky in an unlucky situation. I’ve lived long enough to have 125 treatments, while there are many others who die before getting anywhere near that. On the other hand there are those who become NED (No Evidence of Disease) and stay that way for months or even years without treatment; something I haven’t been able to do. I’ve been NED, but it hasn’t lasted long enough for me to be off treatment except for the aforementioned 3 months. I keep hoping that the next time I get to be NED I will stay that way for an extended period of time. Until then, I will keep having treatment, and keep having side effects while trying to live as normal a life as possible.

Number 126 is tomorrow.