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.

Part 9: Adventures With Xeloda

After I got back from the trip to Paris and Amsterdam, it was time for me to try the oral Chemotherapy called Xeoloda. My Oncologist wanted to wait for me to return from my trip because of its possible side effects. Taking the oral medication would change my visits to the Oncologist to just once every 3 weeks (instead of every two weeks) for an infusion of just Avastin, which would be 30 minutes, instead of 3 1/2 hours for the previous regiment. The procedure for the pills would be to take 8 pills a day- 4 in the morning and 4 at night, two weeks on the pills and one week off. I was looking forward to it because it meant no more pump (as I’ve said, I hate that thing), fewer trips to the Dr, and less time off work. Up until that point, outside of treatment days and pump removal days where I had to take a half-day off for each, I had only missed work twice until the surgery when I was out for 6 weeks. First the insurance had to approve the oral meds, which they did. Then a pharmacy called me, and I had to answer questions from 3 different people. Once I finished that, the drugs were shipped directly to my house. Very convenient. They came with a bunch of papers and warnings, as well as arriving in a bag with a biochemical hazard logo on it. Part of the cautions was not to let it touch my skin at all. My enthusiasm for the pills slowed a bit right about then.

So I started taking the Xeloda without much of an issue- I was tired but it was endurable. The first two weeks went pretty well with only minor side effects. The problems started after the week off when I was midway through the second round of pills. I started getting mouth sores, and hand and foot syndrome. The mouth sores made it hard to talk and almost impossible to eat. I started living on mac and cheese and mashed potatoes. The “Magic Mouthwash” I had did nothing, and the Lidocaine they gave me worked for a short period of time- sometimes just long enough for me to eat something more substantial. The hand and mouth syndrome consisted of pain in my hands and feet; the skin feels like it’s been pulled too tight over your fingers, and they start to crack and peel. It’s an odd combination of numbness, and pain. That happened to my feet too, it just took longer for them to peel. The nurses suggested using lotion (Udder Butter was the most recommended) to try and alleviate the hand and foot pain. It didn’t work so well.  In addition to having a hard time talking because of the mouth sores, I was limping from the pain in my feet, and my hands hurt so much that tying my shoes was painful. The next side effect is where things really went south.

I want to insert a disclaimer here: the bad reaction I had to Xeloda is an extreme case. There are many people who take it and while they may have side effects (and usually do) they are nowhere near as bad as what I experienced. I also need to explain the difference between the Chemo pills and infusions and how the body absorbs each. In an infusion, the Chemo drugs are injected directly into the bloodstream and dispersed throughout the body to be absorbed through the blood; a very direct method for getting the medication into the bloodstream. The medication is then secreted through the mucus membranes and skin (hence the mouth sores, neuropathy, and itching when I get hot). For the pills the Chemo is absorbed through the body from ingestion. In order to get the same dose of the Chemo from the pills into your bloodstream you have to take 3 times the amount of the drug as in the infusion in order for it to be absorbed into your body. It’s then secreted the same way, but there’s more of it, kicking the side effects into hyper drive.

By the middle of the second week of the second round of taking the pills, it started to hurt when I was urinating. At first my fiancé and I thought it might be a bladder infection so I tried some over the counter AZO to counteract it. That did nothing but turn my urine orange. I went to the Oncologist’s office to pee in a cup and see what was wrong; that was a Monday. Before the test results even came back, on Wednesday at about 5:30 in the morning, my body refused to urinate anymore. Imagine 1,000 razor blades coming out while you’re trying to urinate. Now multiply that by 1,000. The oncologist told me that women who have had this issue have described it as a urinary tract infection on steroids. He told me I had mucositis of the urethra; the secretion of the Xeloda had destroyed the mucus membranes in my urethra, leaving no lining for anything that was going past, and causing the extreme pain. I was then told that I would need to get a catheter inserted to let the mucus membranes regenerate. I was not happy about this. After all, I had had one after surgery which was a not so good experience, and besides, who likes having a catheter? The Oncologist made an appointment for me that morning with a urologist, and my fiancé and I drove over there.

We got to the Urologist’s office where I filled out the usual paperwork and waited what ended up being over an hour. During this time I felt like I had to urinate, but my body was still shut down. After examining me, the Urologist agreed that I would need a catheter. He was getting ready to insert it himself right there in the office, when I asked if I would be sedated for it. He said they normally don’t sedate someone to insert a catheter. I said, I’m in excruciating pain when anything comes through there, and you want to stick something up there while I’m conscious? No thank you. I want to be out for this. He said if I wanted to be sedated I would have to go to the hospital. I said, no problem, I’ll go to the hospital. So the Urologist made me an appointment with his son, who also happened to be a Urologist for later that afternoon/early evening, and we went over to the hospital to get ready for the procedure, and to be there in case the son had an opening earlier.

The hospital is down the road from the Urologist’s office, and right next to the Oncologist’s office. We were told to enter through the Emergency Room, and they would take care of things from there- the Urologist had made arrangements with the hospital. We checked in, and they set me up in a bed, with the usual; IV, blood pressure and pulse monitor, and a lung X-Ray to make sure I was in good enough health for the anesthesia. I explained my situation to the nurse and Dr. that were there, and they too said it was unusual to be sedated for a catheter. I didn’t care. There was no way they were doing it with me conscious. After a while the ER Dr. said that if I were willing, he would sedate me and try it. If it didn’t work we could then wait for the urologist. The difference being that waiting for the urologist would mean being there for another few hours and they would then have to admit me to the hospital- more time and paperwork. This way I could be out of there much quicker- if it worked. He assured me that he’d done them before, so I figured I’d let him take a shot.

They got everyone together- a Dr, 2 nurses, and of course my fiancé was there as well. Nothing like having an audience for getting a catheter inserted. The nurse came over and injected something into my IV. I asked if that was the sedation (I didn’t feel anything happening), and she said “Yes, and this is to flush the IV.” My fiancé told me after that as soon as she said that my eyes rolled back in my head and I was out. When I awoke, about 5 minutes later, I had a catheter in me, and a tube that ran from my penis to a bag strapped to my leg where the urine would gather. I had to empty that a few times a day.

A short time after that we were on our way home. I had an appointment with the urologist to remove the catheter the following Monday. Those 5 days were some of the longest I’ve had since my diagnosis. I spent most of them on the couch trying to get into a comfortable position and staying there once I found it. Any little movement caused the catheter to shift and become painful. Our cat likes to use me as her favorite piece of furniture- she lies on my chest an nuzzles my beard- especially when I’m not feeling well, but I couldn’t have her jumping up on me, so I spent the time with a pillow on me as well. Before I left the hospital they gave me a tube of Lidocaine to apply to where the catheter entered me to help with the pain, and I used that quite a bit. One consequence of that, is sometimes the Lidocaine dried and stuck to the shorts I was wearing, and when I needed to do something it would pull- not a pleasant experience. I also used oral pain meds I had been given previously and Xanax to try and keep my head about me.

Monday finally came, and we went back to the Urologist’s office to have the catheter removed. When I got there, the Urologist informed me that he wouldn’t be removing it himself, but his two nurses would. This threw me for a bit. Not only had I had a bad experience in the hospital the first time I had a catheter removed, but I had been in so much pain this time that I wanted the Dr. to do it. I was told the nurses always did it. There was not enough insisting in the world that would have changed anything about that. It took me a good 30 minutes to gird up my courage to let the nurses remove it- even with my fiancé holding my hand I was scared. And it did hurt coming out- though it came out mercifully fast. I was then sent home, and told to come back in the afternoon- they wanted to make sure everything was working as it should. So I went home and waited to urinate again, afraid of what that would bring. The psychological impact of the pain, and anticipation of it still being there was still looming large. Eventually I had to go, and it still took me a while to let it happen. When I finally urinated it did it hurt a little, as they said it would from having the catheter in there for so long, but thankfully it was nowhere near what it was before. I returned to the Dr. in the afternoon, and told him it was better, and from there things slowly got back to normal physically. It was a highly traumatizing experience. The next week it was back to the old regiment of Chemo infusions every two weeks and the pump for 2 days after that, which all of a sudden didn’t seem so bad.

Part 8: Recovery From Surgery

Four days after surgery, my Semi-Colon and I were released from the hospital and sent home to finish recovering. I went home with a bandage down the middle of my stomach where the incision was, and a drainage tube coming out of the right side of my lower abdomen. The drainage tube was placed inside me and went through me to where the resection had taken place. Blood and other fluids exited through the tube that had a ball-like receptacle attached at the end. I had to empty that as it filled up- a few times a day, though as the days went by less and less fluid was coming out of me. I also had to shower with it, which is interesting because if it dangled it pulled just enough to be uncomfortable. Luckily they gave me enough tube that I could perch the end of it (the ball) on my shoulder while I showered, which kept it out of the way. I was able to shower after a few days, when I took the bandage off my abdomen. I was also told not to lift anything over 8 pounds (the equivalent of a gallon of water) as patients with colon resection surgery are more prone to hernias. Interestingly enough I could actually feel what they were talking about. When I attempted to lift something that had even a little weight I could feel the pulling in my abdomen. It’s a strange feeling, but it did keep me following the Dr.’s orders. They also sent me home with pain medication that I took as needed- and for the first couple of days I needed it. My parents went back home after I was home and it was clear that everything was going as well as could be expected seeing as I just had major surgery. I spent most of the next week on the couch. My girlfriend was there, as always, and took amazing care of me.

A couple of days after I was released from the hospital I called my Oncologist’s office, as they requested of me, and told them I was home. They asked how everything went, and when was I coming back to resume my Chemo Maintenance. I was off the chemo for 4 weeks before surgery because one of the drugs, Avastin, increases blood pressure and bleeding, and they want to reduce the risk of complications such as internal bleeding as much as possible. I told them I was still not feeling my best, and asked if it would be okay to wait until after I had the staples and drainage tube removed. They said okay, so within 2 weeks of the surgery I was back at the Oncologist’s office doing the Chemo Maintenance routine again.

Ten days after being released from the hospital I had an appointment with the surgeon to have the (24) staples and drainage tube removed. When I got there the surgeon said the incision looked good, was healing nicely, and that he would remove the tube himself, instead of his assistant. I asked if it would hurt, and he told me that most people just think it feels weird. He snipped the (6) stitches holding the tube in place and then proceeded to pull the tube from my body. I didn’t watch, but my girlfriend did and she was amazed at how much tubing there was in me- somewhere between 18 and 24 inches. He was right it did feel weird. It also hurt! It was a strange, dull and uncomfortable pain that came from deep in my abdomen on the left side; the incision it went in through was on my right side. This is a location I’m not used to feeling at all, and I’ll admit, I let out a scream- not ear shattering but a scream nonetheless. The surgeon asked if I was okay, I told him yes, but I didn’t enjoy the tube removal. He smiled and left and then his assistant proceeded to remove my staples. Again, I didn’t watch, but I felt it- and some of the staples had dried blood over them and were a little tough to get out. I was wincing and flinching at different intervals, so I apologized, telling her it was nothing personal. She told me not to worry; she’d been punched before while removing staples. I told her I wouldn’t punch her, but I made no promises about not kicking. It took less than 5 minutes to remove all the staples (though it felt longer), and when she finished I was a little sore, but staple free- and I didn’t even kick her. I had the beginnings of a scar, and what looked like ant bites on either side of the incision where the staples had been.

The following weeks are a blur- time does pass strangely when you have Cancer. I spent my time recuperating, and trying to get my strength back. Between surgery and Chemo, it does knock you for a loop. My girlfriend and I would try and go out once in a while- just to get me out of the house, walking and getting back into the swing of life. Some forays back to the real world were more successful than others. Bowel issues were the primary variable. On one excursion out, as we were driving home I had to, had to, find a bathroom or it wasn’t going to be pretty. I was driving and finally saw a Boston Market, which I quickly ran into, and the crisis was averted. Through all of this, by necessity, I have gotten more used to using public bathrooms. It’s the fear of having issues like that has kept me from doing certain things. As I move along in my recovery and the “new normal” of my life, I do try and push through the fear and the issues my body gives me while fighting this disease and get out and have some fun.  Sometimes it works, and sometimes it doesn’t.

The surgeon told me that it takes about 6 weeks for the external wounds to heal, and between 8-12 months for the insides to fully heal. I returned to work 6 weeks after my surgery. I was hoping to only be out 4 weeks, but between my body recovering and getting the appropriate paperwork completed so work would let me back in the building (I was out on Short Term Disability), it took a full 6 weeks. Two weeks after that I was able to take a group of students and artists on a trip to Paris and Amsterdam- a trip that was in the works well before I knew I had Cancer. My girlfriend went on that trip too, and I came back from France with a new title- fiancée.

Part 7: Surgery (The Origin of My Semi-Colon)

January15th, 2015 was my surgery to remove the tumor, the area around the tumor and what would turn out to be 30 lymph nodes. I’d never had surgery before (technically I guess the insertion of the port is surgery, but considered “minor” surgery and done as an outpatient), and I’d never spent the night in a hospital before. I was both nervous and anxious. After all, I had been working to get to remission and get my CEA down so I could have this surgery. Also there was something psychologically cathartic about having the tumor and tumor site- the source of the Cancer- removed from my body.

Before surgery I had to get medical clearance from my Primary Care Physician.  That was basically the same as an annual physical with blood work and a chest X-ray (for the anesthesia). Everything came back normal- my Dr. told me once again, that just looking at my test results and the rest of my physical, you wouldn’t know there was anything wrong with me. Small comfort, all things considered, but it beats the alternative. The prep for surgery was the same as the prep for a Colonoscopy. Not fun at all. My parents came in from Texas to be there for the surgery and after- until it was clear things were okay. Of course my girlfriend was there as always- she is amazing! I had to go to the hospital the day before and register for the following day- it was also when I had to pay them my insurance deductible.

Originally my surgery was scheduled for 7:00 AM, but because they couldn’t get a urologist at that time, it was moved to 12:30 PM- more time to angst. I was looking forward to getting to the hospital, getting hooked up to the IV and then getting “something to relax me” as the surgeon’s office promised when I saw them for a pre-op consultation. When I got there; I got undressed, put on the hospital gown given to me, and then climbed into the hospital bed. I answered a bunch of questions from the admitting nurse, and waited. The nurse came to insert the IV, and she couldn’t get the vein right. I have really good veins- easy to see, and easy to hit, but she missed! Not only that, but this wasn’t a little butterfly needle, this one was big and it hurt as she was moving it around inside my arm. After removing the needle, and trying again in a different spot- and more digging around, it was set. She then got up to leave, and I asked her about getting that something to relax me. She said not yet, the surgeon wanted to talk to me before surgery. I asked how long until he came by, and she said about 15 minutes. 45 minutes later the surgeon showed up to give me a rundown of what would be happening.

They were doing the surgery laparoscopically, and would be going in through an incision that curved vertically through my belly button. They would remove the tumor, the site around the tumor and about 20 lymph nodes (it ended up being 30). Then he was going to palpate my liver and see how that felt since the Cancer had metastasized there- though the pre-op PET Scan I had showed that there was no evidence of disease anymore. The reason they needed a urologist was because they had to place a couple of stents by my bladder for a clear path to get where they needed to go, and I assume to make way for what they were removing. When he finished removing everything necessary, the urologist would then remove the stents and insert a catheter. I’d wake up and be all done. Needless to say I was nervous- scared even. Seems with Cancer there’s always something you’re scared of- and the (not so) funny thing is there always seems to be something new that is frightening.

I then got the something to relax me I was promised- just in time for them to wheel me to the operating room. I said good-bye to my parents and then to my girlfriend- which I don’t remember (seems I was relaxed as promised). From what she has told me, she came over to the bed as they were starting to wheel me out. I gave her a nice kiss, and then looked up at her and said, “Please don’t leave me!” I remember none of this, but feel really bad about it all the same.

I woke up after surgery, and the first thing I asked for was my girlfriend, so the nurses went out and brought her back to the recovery area. I was groggy and needing two things- to urinate and drink. My throat was so dry it hurt, but at the same time I couldn’t remember how to swallow- it was a strange combination. They were taking wet sponges of some sort and putting them on my gums. As the water came off the sponges I would remember how to swallow, but then forget as soon as it was gone. This went on for a while. At one point the nurse gave the sponge to my girlfriend and she was giving me water. In between sponges I was telling them that I had to pee really bad. They told me go ahead and pee, that I had a catheter in. In my confused state it took a while for this to sink in. Also, I am not used to just peeing wherever- I usually go in the toilet. Finally I peed, which made part of me feel better, though my throat hurt from being intubated.

I was lucky that my surgeon was Assistant Head of Surgery at the hospital, so I got a room to myself. Although as I understand it, if you have Cancer they put you in a room by yourself to limit your exposure to germs since Chemo lowers your immune system. Once I was in the room and more conscious, they showed me the best part (if there is a best part) of the process- the little green button. The little green button was connected to an IV with Dillaudid, which is a painkiller. I had the button in my hand, and every 6 minutes it would light up indicating I could press it and get another dose. I was in pain from the surgery and uncomfortable with the catheter in- I pressed that button every 6 minutes unless I happened to pass out- the drug also made me groggy. Later that evening, I was told it was time to stand up. They want you standing and then walking around to get your body back in “normal” working order as quickly as possible. I slowly sat up, got to my feet, and having successfully managed that I went back to my bed, and probably hit the green button again.

One of the perks of a private room in the hospital is that my girlfriend was allowed to stay there with me. Honestly, I would have felt bad for anyone who tried to tell her she couldn’t stay. Unfortunately in the hospital they take your vitals every couple of hours and blood is drawn and tested at 5:30 AM. Hard to get a good night’s sleep that way. The drugs made it easier. At one point we had ants in the bathroom. The hospital staff were quick to act and move me to another room. Later that day as I was taking another couple of laps around the ward, I saw the exterminators getting off the elevator, so I helped direct them to the right place, which brought puzzled looks to their faces.

Sometime later that day they removed the catheter. The nurse doing it was new and it was painful when she removed it, but I did like not having a tube in my penis, so I was glad it was gone. I had to keep track of my urine output by peeing into a plastic bottle. However, after the catheter was removed it hurt to urinate. This made it difficult to pee for an extended period of time, which made them do an ultrasound of my bladder to see how much urine was in me. It was more than was normal so the surgeon was contacted. He gave me 2 hours to reduce the amount of urine in my bladder or they were going to put the catheter back in. I told the nurse. “You’re going to knock me out for that, right? After all, it’s the catheter that caused the pain in the first place.” She said they wouldn’t be knocking me out, and to try and get the amount of urine needed out. I went back to the green button- I hadn’t been using it as much through the day, but at the thought of being catheterized again I watched for the green light every 6 minutes, gave myself a dose and then went to try and urinate. Sometimes I would get so loopy from the Dillaudid that I wouldn’t go, but at then end of the two hours, when the nurse came in and took another ultrasound, I had evacuated enough that there was no need for another catheter. Thank G-d. I honestly think the amount in my bladder was borderline, but she didn’t want to deal with trying to put a catheter in me in my mental state. By the next morning the pain while urinating was gone, and things there were back on track.

The next day they wanted to take me off of the green button and put me on oral pain meds. Seems the pain meds can make you constipated, and I needed to have a bowel movement to get discharged. So I went from Dillaudid to Percoset. I was also moved from a liquid diet to a low fiber diet- I got to have both chocolate pudding and ice cream. Best thing in the hospital since the green button. I also needed to get up and walk more- which with the encouragement and help from my girlfriend I did. All of this to get the bowels moving- as soon as they did I would be discharged.

During my stay, the surgeon would come to visit once a day, and by day 2 he said he didn’t need any “movement” just some passed gas. My primary care physician came by as well to check on me. They both told me that everything went very well, and we just had to wait on the pathology from what they removed. I was told that there were Cancer cells found in the lining of my colon- though no tumors. The third morning when my Primary Care Physician came around and was doing his routine exam, my blood pressure was high- approximately 160/105. He had my girlfriend come over and hold my hand, as he took my blood pressure again. It dropped 10 points- which made me smile and gave him a chuckle. If you’ve ever needed an example of how people can affect your life and well being, there you have it.

So it came to pass on the fourth day that I passed gas. Never was a fart so celebrated and high-fived as when I let that one rip in front of my girlfriend. For the record, this is not something that I had done before- I’m just not one of those guys who takes pride in his flatulence- at least not publicly. That day when the surgeon came to check on me, I told him about the great event he had missed. He said I could be discharged and go home. I asked how long that would take, and he told me about 45 minutes. Two hours later, I was packed, and out of the hospital. Thus began "The Adventures of Me and My Semi-Colon".

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.

Part 5: Living Through Treatment

            When I started Chemotherapy I had treatment every two weeks. Each session would consist of infusions that lasted about 4 hours. Every other appointment my girlfriend would join me and we would meet with the Oncologist first, and then go for the infusion (she would leave after I saw the Dr.). There are numerous side effects from the Chemotherapy, and they vary depending on what kind of Chemo drugs you’re on, and you as an individual. Some come and stay, others come and go. I’ll only speak here of the side effects I’ve experienced, and how they’ve affected me.

            The first side effect- the one everyone knows about- is hair loss. The Chemo I started with did not make me lose my hair- it just thinned it. Though I did lose quite a bit, luckily I started with a full head of hair, so it didn’t look *that* bad. Oddly enough I lost all the hair on my calves, and outer part of both thighs. I’m currently off the drug that made my hair thin, and what hair has come back is silver- maybe there’s been some stress in my life lately? Nausea is next, and while I never actually threw up, it’s no picnic, but if you remember, they gave me drugs for that. There’s fatigue, especially in the days after treatment, which is very real, and at times, overwhelming. After the first couple of treatments, I spent most of Friday (after getting the pump removed) into Saturday exhausted, and sleeping a lot. There were also what my Primary Care Physician called “back side effects” where I vacillated between diarrhea and constipation; neither of which is very fun.

             The Oxaliplatin had a very unusual side effect- cold sensitivity. Drinking a cold liquid would make my throat close up and leave me gagging. Also, if I touched something cold it would feel like I was grabbing a live wire. Sometimes it was so intense that even making a sandwich with cold cuts hurt. Luckily this was not a constant side effect, but rather one that would get worse after treatment, and subside as I got farther away from treatment- only to come back when the next treatment was given. My fingernails and toenails have become fragile, tearing like paper even when trying something as simple as opening a pistachio. In addition to that, there’s numbness in my fingers that feels like my skin has been stretched too tight over my fingertips. It got so bad at one point there was a time I couldn’t even button up my own shirt. Along with this, the skin on my fingers would at times start to crack and peel and hurt. Yes, it seems like an oxymoron to say the fingers were both numb and hurt, but it happened.

              One side effect that took a few months to fully impact me was mouth sores. They prescribed a compound they call “Magic Mouthwash” but after a while the sores were so bad that didn’t come close to handling the pain. You know it’s bad when toothpaste hurts. Then they prescribed Lidocaine that I could carefully put on the sores (which were on the inside of my cheeks). I had to be careful to not get it on my tongue or it would go numb and swallowing could become a problem. Bleeding gums were another problem- flossing became almost non-existent- and when I brushed my teeth I would bleed. Not even switching to a soft child’s toothbrush made it better. I wake up every morning with blood, and the taste of blood in my mouth- a new low for “morning breath”. After treatment I would also get a bad taste in my mouth, like there was a thick coating on my tongue. One of the solutions for that was soda. Soda would temporarily get rid of the coating. Of course if I had mouth sores I wouldn’t drink the soda because it would hurt.

               The chemo would also make my nose run, and when I blew my nose, there would be blood. The steroids have also gave me insomnia for the first couple of days after treatment, as well as making my eyesight worse. The Dr. told me not to go get glasses, because when I get off the steroids my eyes will get better and I’d just have to get glasses all over again. It’s all so very frustrating, especially knowing that this is the new normal for me.

Part 4: Beginning Chemotherapy

The first thing you notice when you start Chemotherapy is the room(s) it’s in. There are chairs (recliners) that ring the room, with pillows on them wrapped in paper pillowcases, and I.V. poles next to them. If you’re not the first one there, there are people sitting in some of the chairs connected to I.V. bags, and even an occasional I.V. bottle hanging from the I.V. poles. The I.V.’s are connected through either their arm or a port in the chest. You have a sheet of paper that identifies you, and what the Oncologist has ordered for your treatment. You hand the paper to a nurse, and then pick an empty chair to sit in. You are understandably nervous and scared and anxious about what’s going to happen next.

Then one of the nurses comes over, introduces herself, and fills you in on what’s going to happen to you. First though, you need to watch a video on Chemotherapy, which to be honest you don’t really remember much of. It talks about dealing with side effects, getting help from family and friends, and how therapy can be useful in helping deal with Cancer and Chemotherapy. You have to sign that you’ve watched and understood the video before they’ll begin the treatment. You sign and your anxiety rises.

            Before the Chemotherapy starts, you have blood drawn to see if you are healthy enough to tolerate the drugs; this happens every time you have treatment. If you see the Oncologist, a Medical Assistant pricks your finger so everything is ready when it’s treatment time. If it’s a day with only treatment, they hook you up through the port, and take the blood that way (when you have treatment every two weeks- as I did- you see the oncologist every other visit- once a month). I personally prefer the port to the finger prick- it actually hurts less (most of the time), and you don’t feel like your hand’s a cow that they’re milking for blood. I will say that getting stabbed in the chest with a hollow needle that goes into a surgically implanted piece of medical equipment like the port is quite odd at first, but you do get used to it. It’s amazing the things you get used to. They have a lab on premises that processes the blood, and if everything checks out, they then put the Oncologist’s orders into their pharmacy (also on premises).

The pharmacy prepares all the drugs for every individual getting treatment as they are approved. All the bags and shots have your name and date of birth on them, which you have to verify as being yours before they begin. First come what is called “pre-meds”. For me it consisted of a bag of steroids, Decadron, (that helps the Chemo drugs work), and a shot of Aloxi, which is to help prevent nausea. Once the steroids are done- it takes about 20 minutes- then you start on the treatment. They started me with Oxaliplatin, which is a Chemo drug, and Leucovorin, which helps the Chemo work and protects the Kidneys. After that I had a shot (called a “push”) of Fluorouracil (also know as 5FU- best letters for a Chemo drug ever!). Once those are done, it’s a bag of Avastin, another Chemo drug. All together it takes about four hours. 

What being on Chemo looks like.

Once the bags and shots are finished, I was then hooked up to a pump that had more 5FU in it for 46 hours. I hate the pump- it’s clumsy, cumbersome and a walking reminder of what’s trying to kill you. They give you a fanny pack to carry it around in. I never wore a fanny pack when it was fashionable (if they every truly were) and I wasn’t going to start now. So I slung it over my shoulders when I was out, and put it on a table or desk when I was sitting or working. I did manage to forget about it, move the wrong way and pull it off what it was resting on more than a few times. I even ended up in the hospital once when the tube that carried the drug from the pump to my port sprung a leak. See, it’s okay for the drugs to be pumped into you, but they shouldn’t come into contact with your skin or you may have a problem. As a note, nothing bad happened due to the leak- the hospital didn’t have a tube the right size to replace the one that had the hole, so they disconnected the pump, and I went to the Oncologist in the morning where they replaced the tube and hooked me back up- Voila’! After several treatments, I got the best advice from one of the nurses about the pump- wear cargo pants. The pump fits in one of the pockets and becomes less cumbersome. So simple, and yet so genius. This was an enormous lift psychologically. The one good thing about the pump is that if it did not exist I would have had to be admitted to the hospital for the treatment from Wednesday to Friday. As it is, you go back to the office on Friday and have the pump removed. They flush it with saline and heparin to prevent clotting and then you’re free to go- until next time.

Part 3: Meeting the Dr.'s

When the appointment for the Surgeon was changed, it was a Friday. I honestly have no recollection of the weekend that followed. I’m sure there was crying, confusion, fear, and anger- there’s always anger after you’ve been told you have Cancer. So on Monday, my girlfriend and I went to see the surgeon. He said that we needed to see the Oncologist to get a better idea of what the best course of treatment was before talking about surgery. He did seem confident that the surgery would be a success, and give me the best chance for a longer life span than not having the surgery (at some point I will talk about how odd and unsettling it is to hear the words “ extend your life span” while in your 40’s). Still, we needed to see the Oncologist first. He asked us the name of the Oncologist we were seeing. When we told him, he said that if anyone in his family got Cancer, that’s who he would send them to. It’s always nice when you have one Dr. who can recommend another Dr. so highly- even before you meet him.

Two days later my girlfriend and I were in the Oncologist’s office. There’s a surreal quality to many of the things that have happened since my diagnosis. Walking into the Oncologists office for the first time is definitely one of those surreal moments that all to quickly become painfully real. Sitting in the waiting room, I felt like a cartoon cat who’s hanging from the ceiling by his claws. There’s paperwork to fill out as usual for a new Dr.; this time I (very wisely) made sure that my girlfriend was to be told anything medical that came up- I wasn’t making that mistake twice! Then my name was called and we were escorted to a room. The Dr.’s medical assistant asked some questions and then drew blood. Another thing you get used to, like it or not is that you become a human pin cushion- they draw enough blood to paint a Picasso.

Enter the Oncologist. Again, I have a hard time remembering exactly what happened in what order. It’s been a while, and there is so much information that was thrown at us, it was overwhelming- as if having Cancer isn’t overwhelming enough. I was told not only had the tumor on my colon spread to my liver, but there were multiple legions there. When I asked how many, he told me the amount doesn’t matter, only that there were multiple legions, and that I needed to get a biopsy of my liver to confirm the diagnosis. He said there was an 80% chance that the legions were Cancer- the biopsy would confirm that. He told me I also had to have a port surgically implanted (in my upper chest) to deliver the Chemotherapy I would need. The port is connected to my jugular vein, and it makes it easier to take blood, and have treatment every two weeks. He did tell us there was a small chance that the legions were just granuloma or something else.

I perked up a bit at that and told him that if there was a chance that it wasn’t Cancer I wanted to postpone implanting the port until the diagnosis was confirmed. I was desperately grasping at straws for any little indication that it might not be Cancer, so I could stop worrying that I was going to die. He explained to me that they were as sure as they could be that it was Cancer; the biopsy was just a confirmation, and I needed to get the port as soon as possible to start treatment (Chemotherapy). In addition, the blood work they did was only good for a limited amount of time before the surgery, and if that time ran out they would have to draw blood again. That would delay treatment, and he wanted to get started as soon as possible. I asked about surgery before Chemotherapy. He said since the liver had been compromised, and is a vital organ, that took precedence over surgically getting rid of the tumor in my colon. We were told if I had a good response to the Chemotherapy it would not only reduce the legions in my liver, but shrink the tumor in my colon as well. After a brief discussion with my girlfriend, I agreed to have the port implanted, and have the biopsy on the same day. All in all, the Oncologist spent about 90 minutes with us, explaining things and answering any and all questions we had in a very calm manner. One of the other things I do remember him saying was “Don’t look at the internet”. I was good with this for about six months, then I had a moment of weakness and started surfing the net. That’s a mistake I’ll detail in a future post, let’s just say I learned to always listen to my Oncologist. After he left, I was given the first 2 of many prescriptions- to deal with the side effects of my treatment. One prescription was for mild nausea, and one was for severe nausea- an ominous sign of things to come. I had the port surgically implanted and the biopsy done within a week (which I will also go into detail about in the future). Next up was the beginning of my Chemotherapy.

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!