Part 10: The End of The Beginning

So I was back on the regular Chemo Maintenance regiment- infusions every other week and then a pump for two days. The side effects from my “Adventures With Xeloda” were still lingering but getting better. Now it was time for a new adventure- marriage. We knew this was something that could survive the “better or worse”- though I will admit I hoped to get to the health part of “in sickness and in health” sometime soon. When we first started talking about marriage I joked about doing it in Vegas- and she agreed. So we planned our Vegas wedding in June (someone’s bright idea to get married in the desert in the summer!). We decided to have the ceremony at the Excalibur, and upon the suggestion of a friend, stayed in the Monte Carlo. Of course Cancer doesn’t care what plans you have, it does it’s own thing. My body, which had been valiantly fighting this disease for over a year started having issues again- incredibly painful bowel movements. Unfortunately this happened while my Oncologist was on vacation, so his office referred me to a gastrointestinal guy- the one I had used in the past couldn’t see me for two weeks, and I was in a lot of pain, and didn’t want to wait that long to be seen and get to the bottom of the problem. The oncologist’s referral got me in right away and he diagnosed me with an anal fissure, gave me a cream to apply, and told me to take Sitz baths twice a day. A Sitz bath is where you sit in hot water for 10-20 minutes and soak. After about 10 days things still weren’t getting better. I had an appointment with my back from vacation Oncologist and he told me to go see my surgeon. The Oncologist told me that he knows fissures are painful and that women have told him that having a bowel movement with one feels like giving birth.

The surgeon confirmed the fissure, but told me that part of the problem with a fissure is that the sphincter muscle goes into spasm, and that makes it even more painful. He gave me a different medicine to be applied internally and told me that 90% of the people who have a fissure get better with this medication. I wasn’t going to apply it barehanded, so I went off to find finger cots. Just picture something that looks like a condom for your finger. So I started applying the medicine 3 times a day. It’s in the middle of this that we went to Vegas to get married. The wedding was great with family and a few friends attending- small, intimate, and perfect. While there I also got to play poker at the World Series of Poker- just in the room at the Rio, not a bracelet event- though maybe someday… Despite everything I don’t think I’ve ever been happier than I was marrying my amazing and lovely wife.

When we returned from Vegas things were not any better for me physically- as a matter of fact they were getting worse. I went back to the surgeon, and he told me that with the chemo and stress I was under that a way to relieve the spasms that were causing the pain was to have a sphincterotomy. This is a “minor” surgery where they cut the sphincter muscle, which prevents it from going into spasm. It’s an outpatient surgery requiring one small cut and one stitch. The only risk was for fecal incontinence, which I was told is more common in women (whose sphincter muscle is not as large) and old people (whose muscles don’t work as well to begin with). The surgeon went on to tell me that he had not seen this happen to a man my age. I decided to have it done. It was a quick procedure with no huge preparation like my other surgery. I was in and out in a few hours, and told to rest for a couple of days afterward. For a few days, maybe a week, things got better; the pain was less, and my body seemed to be getting back to “normal”. Then the pain started again.

I went back to see the surgeon. A quick side note; it doesn’t matter how many times it happens, having a colo-rectal surgeon examine you is never fun or dignified. He said the problem I was having now was a skin irritation- basically an adult version of diaper rash. I asked him if there was something else I could call it since I didn’t want to go around and tell everyone I had diaper rash. He told me it was Moisture Associated Dermatitis, to which I replied, “You mean I have “MAD Ass?” He found this highly amusing (got to love a surgeon with a sense of humor) and asked if he could use that. I told him he could as long as I got credit. I got prescribed another cream to apply- this time externally over the irritated skin. I was also told no more Sitz baths as the moisture was the problem, and to use Desatin as needed to keep the area dry and try and prevent more irritation. Also, sweating was a problem, as that would also cause more irritation. Living in Florida, that did restrict things I could do, which is frustrating to say the least. The problem continued to come and go (alternating with extreme itching) for the next several weeks. It mostly got worse after chemo and the pump.

 In October I got my next CT Scan, and it showed that everything cancer-wise was stable. There was one lesion left on my liver, but it had not grown. With everything continuing to be stable the Oncologist discontinued the pump- I was down to infusions every 2 weeks and that was it. With this, my bowels and my ass started getting better temporarily which I am very grateful for. Unfortunately my CEA numbers were slowly, but steadily rising…

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.