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.

Part 6: Progress and the Road to Remission

Eventually I got into a routine with the treatment and it’s side effects. Certain weekends became “chemo weekends” where you know you’re not going to be able to do much. It’s inconsistent- some days I could do a couple of things, and others there was nothing I could do but become one with my couch- which is very comfortable. Time passes strangely and I learned to deal with the effects of the treatment on my life. There are times of despair, and anger, but as I fought through those, I got used to the grind of treatment and the knowledge that I was going to have days where I couldn’t do anything but lie on that comfortable couch and flip between ESPN and HGTV and nap. Those 2 networks may seem like an unlikely pair of places for respite, but they’re really not. I’ve found them to be the best escape for me on long “chemo days” as both rarely have any mention of Cancer on them (though when Stuart Scott died of Cancer I laid off ESPN for a few days). On other networks, there always seems to be Cancer somewhere. Just watch TV for a while and see how many shows have at least a mention of Cancer- and then there are commercials for Cancer treatment and treatment centers. Every time Cancer would come up, I’d turn to my girlfriend (if she was with me, if not I’d say it to myself) and say, “It’s always fucking Cancer.” Like I need another reminder of what’s trying to kill me.

When you have Cancer, they track your progress, and the success (or lack there of) of your treatment by blood tests and scans. The Carcinoembryonic Antigen (CEA) is a blood marker that determines the amount of Cancer in your system. In a healthy person the CEA is a number between .1 and 2.5. A smoker can have up to 5.0. A CEA number over 5.0 indicates Cancer. The first time they tested me my CEA was 354.4. I had CAT Scans on my pelvis, abdomen and chest done when I was first diagnosed as routine tests after they found the tumor in my colon. I had an additional CAT Scan with contrast (barium sulfate), which identified the size and number of legions prescribed by my Oncologist. The contrast comes in several different flavors, and I really didn’t mind the taste of them. I had to drink one (rather large) bottle of contrast 2 hours before, and another one hour before the scan (I had one banana smoothie and one vanilla smoothie flavor). You also have to fast for 4 hours before the test. When the time comes for the scan they inject iodine into you to contrast the barium sulfate. When they inject the iodine you feel like you have to urinate, and are warm all over (thankfully not from actually urinating on yourself). This first scan is used not only to identify size, number and placement of the legions, but it also serves as a baseline of comparison for future scans to again indicate the success (or lack there of) of the treatment you are getting. After beginning treatment I was told that at 3 months I’d get a PET Scan to see how the treatment was working. While a CAT Scan shows legions, they do not show whether those legions are cancerous. A PET Scan not only shows the legions, but they inject you with radioactive sugar that literally lights up a legion on the scan that is cancerous. My first PET Scan showed the Cancer in my colon and throughout my liver. My girlfriend and I epically miscalculated that getting to the PET Scan meant that I would be done at that time. Ignorance truly is bliss. My Oncologist would later tell me that in this first PET scan my liver “lit up like the sky”.

I got lucky in an unlucky situation with my response to the treatment. After one month of chemotherapy my CEA number dropped from 354.4 to 115.8. The next month was down to 37.7, then 25.4, and then magically, after 5 months I was under 5 at 4.2. Under 5.0 means remission, however remission doesn’t mean what most people think it does. For Stage IV Colon Cancer, remission means that the Cancer is now on a cellular level- there are Cancer cells floating through my body, but no tumors. The Oncologist also told me at this point that under 20% of Stage IV Colon Cancer patients get their number that low- reach remission. Around this time I had my second PET Scan, and that reinforced the CEA results, that I had no tumors. My Oncologist wanted my number below 2.5 to then do surgery to remove what was left of the tumor in my colon and the area around the tumor. The idea being that even if the tumor was mostly gone, the site of the original tumor could still be producing more Cancer cells that would circulate through my body and possibly attach themselves somewhere and grow into non-treatable tumors. They didn’t do surgery when I was first diagnosed because my liver was so compromised, and it’s a vital organ, so it was more important to try and get rid of the Cancer there through Chemotherapy, than remove the tumor in my colon. The Chemo would also shrink the tumor in my colon if everything went well, which it did. Two months later my CEA was down to 2.1, and I made the decision to have surgery.