Interlude 3: Eternal Sunshine of My (Not So) Spotless Mind

I know it’s been a while since I’ve posted an update. Honestly, my concentration level hasn’t been there, and neither has my patience. While my story is not over by any stretch of the imagination, I’ve had a hard time continuing to write about it. The most recent news: I’m still in remission, and my latest CAT Scan showed only one lesion left on my liver (which has been stable for about 6 months), which is great news considering I was told that when I started that my liver was more disease than liver and looked like Swiss cheese. Since the liver regenerates, where there were lesions, there is now healthy tissue. Would it be better if the last one was gone? Of course, but I’ll take being down to one. More good news- the amount of chemo I get has been reduced (I no longer have to wear the cursed pump after the infusions- though they still happen every two weeks for three hours). Of course, things always seem to be a mixed bag. My CEA number has steadily risen and is now at 2.1. If it rises over 2.5 for two tests in a row I’m back on full chemo. So, while I’m trying to stay positive, it feels like that number, and full chemo is out there waiting for me. And while the physical problems are still vast and varied, it’s the mental ones that have been getting to me more lately. How do you keep your mind out of the rabbit hole of worry and anxiety about dying of Cancer and the effect that will have on those you love? How do you forget about Cancer, and remember to live your life?

“Eternal Sunshine of the Spotless Mind” is one of my favorite movies. It’s the story about a man (Joel, played by Jim Carrey) who after a painful breakup discovers that his ex-girlfriend Clementine (played by the amazing Kate Winslet) has undergone a procedure to have all memories of him and their relationship erased from her mind. Joel decides to undergo the same procedure. The film explores the intricacies and intimacies of relationships. A good deal of the film takes place inside Joel’s mind as his memories are being erased. There comes a point in his journey where Joel decides he doesn’t want to erase his memories of Clementine- that they weren’t all bad. He’s on his knees and screams: “I want to call it off! Can you hear me? I don’t want this anymore! I want to call it off! Is anybody out there?”

I know exactly how Joel feels. No, I haven’t had any memories erased; I was diagnosed in April 2014 with Stage IV Colon Cancer. I’ve been on Chemotherapy every two weeks for 18 months, with a break to have colon resection surgery. I’ve endured a string of at best uncomfortable, at worst incredibly painful side effects. Yes, I’m currently in remission, but as I’ve written about before, the disease is still there in my blood, like an internal Sword of Damocles. There’s barely a day that goes by where I don’t mentally yell those same words Joel did in the movie. “I want to call it off! Can you hear me? I don’t want this anymore!” It’s the pervading thought in my mind. It’s become my mantra. I wish I could have it erased. However, unlike Joel, I don’t have a choice about whether I want to do this or not. You can’t choose to not have Cancer once you do.

This has led me to wonder where I fit in the scheme of things Cancer-wise. On the one hand I do have Stage IV Cancer, and that’s real and serious and life threatening. On the other hand I’ve had a great response to treatment and am doing better than most in my situation. My Oncologist told me that they have protocols for people who do poorly, and they have protocols for people who are doing average. What they don’t have is protocols for people who are doing above average. One of the main reasons for that is it’s so rare to do well (though it’s getting less rare as more and more drugs are being created to combat this scourge). I am a member of a couple of online Cancer groups, and I see people on there who are doing worse than me in one way or another; bad reactions to the chemo, colostomy bags, no support, no insurance. That brings an odd combination of feelings: luck, fear and guilt. I’m lucky that I’m not them. I’m lucky to be doing so well in a bad situation, I fear ending up like them- or worse, and I feel guilty for not doing as poorly as others, and for not wanting to be like them. It’s an odd sensation to feel lucky about my incurable Cancer. In our house we call it being lucky in an unlucky situation. But it’s still Cancer. It’s still always there, and it’s very difficult to forget.

There are times I do forget what’s happening to me. Spending time with my wife, going to a movie, playing poker, swing dancing, and hanging out with friends are all things that even if only for a brief amount of time allow me to forget about this trauma that is Cancer and how it’s affecting me. These are good things. These are things I don’t want to forget, however I would like- with all of my being- to forget about Cancer. Unfortunately, like Joel, no matter how much I want to call this off, I can’t. Mary (played by Kirsten Dunst) from “Eternal Sunshine of The Spotless Mind” sums this up with a Friedrich Nietzsche quote: Blessed are the forgetful: for they get the better even of their blunders.” I never thought that being able to forget something would be so precious- even if it’s just for a little while. Now I know better.

Interlude 2: How Can You Laugh At A Time Like This?

About a month after I started treatment I went to a party for Memorial Day. It was one of my first times out with our group of friends since being diagnosed, and I was quietly trying to enjoy myself while dealing with the side effects from my 3^rd round of chemo. Funny thing about the side effects is that there always seems to be at least one bothering you at any given time. My girlfriend was driving back from Jacksonville, and was going to be joining the party when she got back in town.

            After a while as I wandered into the house from the patio I came across 2 women striking strange poses and taking selfies while doing so. I just stood and stared when one of the women who I’ll call “Rose” saw me standing with a blank expression on my face and asked, “What, don’t you appreciate art?” I just kept my blank stare, and said in as deadpan a manner I could muster, “I guess not.”  Friends in the kitchen started snickering at this point, because I am an artist and art professor- which Rose was unaware of. The other woman laughingly started making smart-alecky remarks for Rose, which I corrected- she was a bit buzzed as well.

Woman: It’s not like he makes art

Me: Paint and draw

Woman: It’s not like he paints and draws and is teaching art classes…

Me: Art History right now.

Woman: It’s not like he paints and draws and is teaching an Art History class and has a painting in a gallery:

Me: Drawing in a museum

Woman: It’s not like he paints and draws and is teaching an Art history class and has a drawing in a museum…

And At that time I proudly did have a drawing in a Nationally Juried show in a museum. All the while Rose is not paying attention to the bantering between the other woman and myself. She is half-drunkenly explaining to me how I should appreciate art, and how it would make my life better. Finally she pauses, there’s dead silence in the room (the snickering had died down), she looks me straight in the eye and says, “You’re just a dying person!” I stood there, and calmly said, “Yes. Yes I am.” At this point everyone else in the room falls down laughing hysterically. Rose looked around puzzled at why everyone is laughing, and left to go outside and get in the pool. In addition to not knowing I was an artist, Rose didn’t know I had Cancer.

            At this point my girlfriend arrives from her drive back from Jacksonville, and after saying hello she also goes out to the pool where she sees Rose. They’ve known each other for years but hadn’t seen each other in a while so the usual “catching up” conversation ensued. I’m told it went something like this…

Rose: How’s everything going?

My Girlfriend: That’s a loaded question- are you sure you want to know?

Rose: Yeah, sure what’s up?

My Girlfriend: Well things have been a little rough- Howard’s having trouble working.

Rose: What does he do again?

My Girlfriend: He’s the Coordinator of Media Arts and teaches Art History at The Art Institute.

At this point Rose’s face showed a little recognition of the previous conversation, and she started to look uncomfortable.

My Girlfriend: Of course everything’s been rough since he was diagnosed with Stage IV Colon Cancer and started Chemotherapy.

Rose: (jaw hanging open) What?

My Girlfriend: But I’m optimistic that everything’s going to be okay…

Rose: (looking more stunned) What?

I can only assume at this point that Rose finally understood what was going on, why everyone was laughing and that she had just- quite innocently- stuck her foot in her mouth. My Girlfriend left Rose at that point to come back inside. Rose proceeded to get drunk, and left the party without saying good-bye to anyone. As a matter of fact no one really saw her until another friend’s bridal shower- 3 months later!

I wasn’t mad at Rose. Quite the contrary, I was bemused. She was completely innocent in what she did- there was no malice there. That’s where the humor lies. She was embarrassed for a long time (which I feel bad about), but the last time I saw her, I asked if I could tell that story here, and that I would leave out her real name. She said it was okay, and to call her Rose.

I like to think I have a pretty good sense of humor, and I truly love to laugh and hear laughter. I think most people feel they have a good sense of humor- though I did know one woman who once said that she had a great sense of humor but didn’t like to laugh. That puzzles me to this day. After getting the initial diagnosis of Cancer there was no humor. There is shock, fear, anger and dread. After these initial feelings wore off, I found the humor- or so I thought.

I had to find the humor (or at least try to) or I would have just curled up in a ball in some corner crying and never come out. At first a lot of it was gallows humor. I remember a time when a friend found an app that would age a picture of you 30 years. After showing a few results from other people, my response was “I hope I’m around in 30 years- hell, I hope I‘m around in 10.” Ouch. It was an attempt at humor, but not a very good one. There was a lot of “humor” like this for months after I was diagnosed, and it wasn’t fair. One friend even told me that he’d never win an argument with me again- and he was right- even though I didn’t want him to be.

After you’re diagnosed with Cancer, there is no guide on how to deal with it. Anyone who tells you how to deal with it doesn’t know what they’re talking about. Even someone who has Cancer can’t tell you how to deal with your disease. You don’t know how you’ll deal with having Cancer until you have Cancer (and I hope no one reading this ever has to deal with it or deal with someone they care about having it). I dealt with it through humor. Unfortunately the humor I was using after the diagnosis was humor that made other people feel uncomfortable. Then again, having Cancer, me just walking into in a room makes some people uncomfortable.

To tell the truth, at first I wanted other people to feel uncomfortable- though not consciously. I wanted them to feel, even for a minute, something close to what I was feeling, mostly because I didn’t want to be alone in all the crappy feelings that were always there for me, and I was trying to make sense of my new reality. I didn’t want to have Cancer. Unfortunately no amount of joking- good or bad- will ever change that. As time passed, I realized what I was doing; I was making people I care about feel bad. I didn’t, and don’t want to do that. The thoughts are still there, but I do a better job of keeping them to myself. I want to take this opportunity to apologize to those that I care about that I’ve made uncomfortable. I’m sorry, and thanks for bearing with me while I continue to figure things out.

So, to answer the question, “How can you laugh at a time like this?” I have to, or I wouldn’t be able to function; laughing brings me some much-needed joy, and helps me keep my sanity.

Interlude 1: The Colonoscopy

I know the last entry was pretty heavy, so I thought I’d take a break from the overall arch of my journey and lighten the mood with the story of my first Colonoscopy. Yes, the story of my first Colonoscopy is going to lighten the mood. Let’s start with what happened after the test…

After my Colonoscopy was finished they had to wake me up from the anesthesia. At the time of the test I had been up for over 24 hours, and the anesthesia was a welcome deep sleep for me. They asked me if I could dress myself, and I said sure. I’m still not sure how I managed to do that without injuring myself, because after the nurse guided me out to the car where my girlfriend waited, as I’ve mentioned previously, I couldn’t even fasten my own seatbelt. I tried to buckle up, flailing away. After more than a few misses, my girlfriend gently reached over and buckled me up. It was here that I had the “Why didn’t anyone tell me the results?” fiasco mentioned in my first post. As you may or may not know, they don’t release you after the Colonoscopy until you’ve passed gas. I don’t remember doing this, but my girlfriend tells me that I told her (which I also don’t remember) I was “blowing the place up” right after they finished, which I emphasized by verbally making the noises for her. Ah dignity, why hast thou forsaken me?

At this point I was famished so we decided to go get something to eat. We went to a diner I know, because I wanted corned beef hash and eggs. I lost 7 pounds during the prep for the Colonoscopy- time to get some of it back! Most of the diners there were senior citizens. In I walk with my girlfriend- who is several years younger than me. As we’re being seated, still feeling pretty happy from the anesthesia, I lean down and whisper to my girlfriend, “How does it feel to lower the average age in here to breathing?” My girlfriend has since told me that I was not whispering at all, that I said it in a Christian Bale inspired Batman voice- that carried. She says that more than one of the older ladies in the restaurant gave me death glares.

We order, and as we’re waiting for our food, I realize I have to urinate. So I get up and somehow manage to get myself to the bathroom. At this point I don’t trust myself to do that standing up, so I use one of the stalls. I then return to our table. After eating my first meal in 36 hours, I find that I have to urinate again- go figure. So back I go into the bathroom- I still don’t trust myself not to pee everywhere so I sit in a stall again. It’s when I’m done and washing my hands that I look around and see there are no urinals in the bathroom. That’s when it hits me- I’m in the Ladies Room- for the 2^nd time. Amazingly there were no women in either time, and no one came in while I was there. After we pay the check my girlfriend drives me home where I relax for the rest of the day.

As I mentioned, my Primary Care Physician told me to get a Colonoscopy after I was having problems with constipation. So, I went to my Gastroenterologist to have a consultation and we made an appointment for the procedure the next week at 7:30AM. At this point my biggest fear was the preparation for the Colonoscopy. We’ve all heard (and some have experienced) horror stories about the prep for a Colonoscopy. Drinking a gallon of foul tasting liquid, and then spending hours on the toilet while your body cleans itself out. I got lucky. My Dr. prescribed Prepopik. And while I’m not saying I want to drink this regularly, it is much easier than the older, more standard prep. Basically after you’ve been on a clear liquid diet for 24 hours (just like all other preps) you mix the Prepopik powder with 5 ounces of water and drink it at 5 PM. It tastes like stale Tang. You are then instructed to drink 5 8-ounce glasses of water in the next 5 hours. At 10PM you drink another 5 ounces of Prepopik, and have to drink 3 more 8-ounce glasses of water in the next three hours.

I didn’t know how long it would take for the Prepopik to kick in, so after about 45 minutes with just a bit of a grumbly stomach, I called the Dr. Before he could call back saying it takes about an hour for it to start, I had my first hint of the cleansing to come. If you haven’t done it, just think of it as someone turning on a faucet that comes out your ass. And it proceeded to do that off and on- but mostly on- until about 5:30 the next morning. Without getting too graphic, it was not a pleasant experience. Of course the tumor they would find during the test didn’t make things any easier. I’ve been told I’m full of shit, but after that long night, no more!