Part 13: The 2nd Coming (Recurrence)

            So the cancer came back again. My “break” which was filled with pericarditis and hernia surgery turned out to not be such a break, and now while I was recovering from both of those, I had my second recurrence. I was immediately put back on full chemo- Ironotecan with Cyramza for three months. My schedule of treatment was three weeks on and then one week off. It sucked! What sucked even more was that it wasn’t working. My CEA was steadily climbing; at the end of May 2017 it was 8.2, and by August 16^th it had risen to 46.9. My number hadn’t been that high since June 2014! With the CEA trending upward it was clear that my cancer had grown resistant to the Cyramza, so my oncologist changed my cocktail to include Vectibix in place of Cyramza. Good news/bad news about the Cyramza being gone. Good news: no more excessive flatulence! I enjoyed that going away as I was never one of the “pull my finger” crowd, and the amount I was farting went from embarrassing to comical and back a few times over. Bad news: that drug, and the others in that family are no longer viable treatment options for me anymore. This is scary because there are a limited number of treatment options out there and this one was just scratched off the list for me. In addition, there is no guarantee that the other available drugs will work. Eventually the cancer will grow resistant to all the treatments, and I’ll die. But as Arya Stark would say, “Not today!”

            Starting a new treatment is always nerve wracking (as if having Stage IV colon cancer wasn’t nerve wracking enough) because you never know if the new treatment will work. So we started with Ironotecan and Vectibix. Good news/bad news about Vectibix. Good news, after the first treatment the number dropped from 46.9 to 21.5. It was working! (insert Snoopy ‘Happy Dance” here) Better news: it continued to work and the number continued to drop to the lowest levels I’ve ever had on a consistent basis, <.5. Bad news: when Vectibix is working you get a nasty, itchy pimply rash. I had acne in high school, but it wasn’t nearly as bad as this. It covered my face, neck, scalp and torso fully, and went lightly down my arms and legs. The oncologist gave me Doxycycline, which helps with the rash not getting infected, and Prednisone, which helps the itching- most of it anyway. Sun, heat, and sweating all aggravate the rash and itching, and it’s hard to avoid heat here in south Florida- thank G-d for air conditioning! The rash is uncomfortable and ugly. A side effect of a side effect is the 15 pounds I’ve gained from the Prednisone. One odd side effect is super eyelash growth. My eyelashes grew so much that I had to ask my wife to trim them multiple times because they scrape against my eyeglasses and smudge them. The lashes on the outside were so long, they were touching my eyebrows. Yet another odd request for a spouse/partner brought to you by the cancer/chemo experience, ”Um, sweetie, would you mind trimming my eyelashes for me?” I’ve always had long eyelashes; I’ve been lucky in that- now they’re crazy! 

            In addition to crazy eyelashes, my nose hair grew coarse and out of control, but luckily my beard trimmer has a nose hair trimmer attachment. While I have the rash on my face, neck and torso, the skin on my fingertips have become dry and they would split open without warning. Imagine getting paper cuts without touching any paper. The skin on my fingertips has changed so much the fingerprint ID on my phone doesn’t recognize my thumb.

            After four months of the new treatment, and shrinking numbers I had a PET scan. The CEA by that time was well below the NED (No Evidence of Disease) threshold. In the past when my number was down that low I was NED- even if only temporarily. Not this time. The PET showed there was still one lymph node behind my stomach that was enlarged, but not active. It was dormant. My oncologist said he doesn’t like dormant, he likes eradicated. The analogy he used was that there was a bear in a cave and it was sleeping. It will eventually wake up. I replied, “Let’s go kill the bear.” I would have three more months of treatment and then another scan. March 2018, was time for that scan- this time a CAT scan. Good news: the lesion shrunk even more- from 1.9 cm to 1.6 cm. Bad news: to be considered NED (and to have killed this bear) the lymph node had to be 1.5 cm or under. The oncologist was happy- “It’s still shrinking,” and then ordered two more months of treatment. We’ll have to wait and see what the scan shows after that…

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.