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…

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.