My Story

I thought I'd give you all a little background as to how I found out I had cancer. I was a rather normal guy, I went for physicals ever year or so ever since my mid-thirties. Before that, I didn't go that often. I had been going to my PCP (primary care physician) for about 10 years, he was also an oncologist. I went for a yearly checkup and also I was having some trouble with acid-reful so I thought I should get the once over. Well, I went and they did the usual stuff, blood pressure, heart rate, etc, plus the did blood work. The following week, I had to call them after not hearing anything and I was told there's seems to be something 'abnormal' with my liver functions. My PCP didn't seem to think it was a big issue, but I went back to get a sonogram because they thought I maybe had gallstones. That was in the morning. After reviewing the sonogram, he saw spots on my liver and ordered a CT scan immediately. I had to drink 2 bottles of this disgusting barium solution (warm yet) and return in an hour for the test. So I drank it, and came back, had the CT scan and then went home. That was about 2 pm. I was home with the kids, my wife was at work teaching violin when I got the call at 5 pm. My PCP told me "I'm sorry to tell you this but you have Stage IV colon cancer". I was numb....
more to come...

The Next Day
Dana and I went to see Dr Gold (PCP) and he sat us down, took some phone calls (how fucking rude) then proceeded to paint a bleak picture. His plan was to do surgery right away on the colon, then to try to control the cancer in my liver with chemo. He never once mentioned the word 'cure'. That was not a cheery visit to say the least. He more or less urged us to get a second opinion, which I don't think the thought we'd do. Thank God that my brother's wife is an artist/illustrator (she did the Freud painting I use on my other profile) who had worked at a pestigeous school in the city. Some of her students were Walter Cronkite III, Wayne Gretsky's kids, people with mucho $$$$. She had taught a radiologists 3 kids (who worked at Sloan Kettering) and she called him and explained my situation. He got me in to see the top colo-rectal expert in the USA in two days. We (my wife, my brother, his wife and I) met with her and she reviewed my scans and felt it was best to try to 'cure' me of the cancer by giving chemo first, then surgery, install a hepatic pump that would give more chemo to the liver after the surgery. It seemed like a sound plan. Since SK was not in my HMO network, I had another consultation with Hackensack University Medical Center in NJ and met with the top Doctor there. We explained the situation, the two differing approaches to my treatment, and wanted his take on it. We met for over an hour. He answered all of our questions, felt like the 'cure' approach was the way to go too, and he was willing to take a backseat and let the Oncologist from SK call the shots. I would get treatments in NJ, and consults in NY. So I went back to Dr Gold (PCP) and explained what we wanted to do. He was very cool about it to say the least. I needed to get a port-a-cath implanted in my chest in order to start chemo. He was like "Well, it will take a few weeks to get that set up, you've had cancer for this long, what's a few more weeks?". We were like "NO" I wanted to fucking kill him! My brother found a surgeon who could do it the next day, so we had it done. Then, we wanted to start chemo the day after that. Dr Gold said "Well, we can't do that, we don't know if they have the drugs or the room available". So once again, my brother called a hospital, checked to see if they had the room and the medication and they said yes. He called Dr Gold back and told him to authorize it immediately. When I got home that day, Dr Gold left a message on my phone for me to tell my brother not to call his office again. I found a new PCP the next day. I would still like to know how I could go to a MD, who was a fucking Oncologist, and not have him catch my cancer sooner. What happened to stages I -III. There is no stage V. This guys sucks and I hate his fucking guts. The only good thing is that he finally did find it, I felt fine otherwise and if I didn't go to get a physical, I would be ouiji boarding instead of Blogging!
more to come....

Starting Therapy
So, I started chemo on a Friday I believe at Valley Hospital in NJ (where I was born...) I really don't remember the specifics of my first chemo, other than I was not real scared. I was still numb I guess from the shock of my diagnosis and I was going full steam ahead with getting the treatments done so I could try to save my life. My infusions were given over a 5 hour period. I was getting what was called the FOLFOX regimine. Lucavorin, Oxyplatin and 5 FU (gotta love the name!) A month later I was on Avastin. I was on the internet as part of an article written by Paul Eilas from AP (Associated Press). They even sent a photograher to my house, but I'm getting ahead of my self here. The plan was to have 6 months of chemo, then see about an operation. So I would get 5 hours of stuff, then they would give me the 5FU in a small fanny pack that contained a pump and a bag of the stuff. I would be hooked up to that for 48 hours and have to wear it all fo the time. It wasn't so bad once I got a smaller bag. The first bag they gave me could fit a loave of bread in. Then a nurse would come to my house to disconnect me. I'll never forget the first time she came over. I had been at my son's first Karate tournament (he placed 1st for form - I was so thrilled) and I had to leave early so I could get back to meet Nurse Ratchet, I'm home and freaking out as it is and she is there explaining in too much detailall of this shit I really didn't need to know. I told her, just take the needle out, and tell me after. Well, she kept going on and on. I was getting faint and almost passed out. I said 'Take the fucking thing out'. She finally did. I wanted to punk slap her so bad.
So, this went on for 6 months. Every 2 weeks I would get a treatment in NJ and go for consultaions in NYC with the 'main oncologist'. Sloan was not in my HMO and being a temp, I was lucky I had any benefits. I liked the Oncologist in NJ, he was very cool and a smart guy. I was very lucky he didn't let his ego get in the way of my treatments, Not all Doc's would do that. I would get my treatments on a Friday, then have the weekend to recover. It knocked the shit out of me on Saturday, then I would be all wired on Sunday. after a few moths, i started to lose the feeling in my fingers and toes. I still don't have it all back, my toes always seem asleep. Over the summer (end of June I guess) my brother bought a kayak for me to use. He lives in Manhatten, not too much use for it there. I live 2 blocks from a lake. I started to kayak like crazy. I went 81 consecutive days. I went in the rain, during chemo. I did not miss a day until I stopped 2 days before my operation. During last summer, the effects of the chemo and steroids really got to me. Plus I was dinking like there was no tomorrow, because, there might not be a tomorrow. I was definately abusing the booze. I felt I had to numb myself. There's more to this story, but I won't go into it now. There were also problems with the position of one of the tumors. It was right on top of my hepatic artery which feeds blood to the liver. It was basically inoperable. They kept me on the Avastin and that was able to shrink it enough where they felt they could go in and cut most of it out (60%) and freeze or ablate the rest of it. The date for surgery was Sept 20, 2004. Eight days before my 47th birthday........
more to come...

I stopped kayaking on Saturday, Sept 18 after 81 consecutive days. I had to 'clean out' my system. Not fun. I remember having to check in around noon or so. My surgery was for 5 pm. I went with my wife and my brother. Looking back, I really don't remember much about it at all other than I was rather quite and nervous. When I'm nervous, I sort of shut down and I'm not a barrel of laughs to say the least. After doing all of the paperwork and all that stuff. I remember I had to get ready for the surgery. I brought an extra pair of glasses with me because I knew they would not let me wear mine, but if I can't see, it freaks me out. So I asked them if I could wear the old ones until they knocked me out and they said yes. I remember being wheeled down to the OR, saying goodbye to Dana and Larry, holding my breath and going through the swinging doors. I got into the OR and it was like an icebox. I didn't mind because I don't mind the cold. It was a rather older looking room, not spic and span like on TV. There were about 10 people in there all wearing masks (so I couldn't identify them later I suppose) . One tech was working on my anesthesia and an other was preparing all of the cultry. They also had this really neat hot air blanket that blew hot air into it and it keep you warm. My wife would love one of those. Then I remember them starting to knock me out. The next thing I knew, I was in recovery and it was 2 am. It was a 7-8 hour operation. HOLY SHIT! I was real groggy but I do remember seeing Dana and Larry there. Then the next thing I remember, I was in a room sometime during the day. The first roommaate I had was about 90 years old, hard of hearing, talked like a male version of Edith Bunker and liked the room at 98 fucking degrees. I was in soooo much pain and I was sweating bullets. This guy would have a visitor and they would ask a question and he would scream 'WHAAAATTT????' He was so loud. I really hated him. I was praying that one of us would die, hopefully him. At one point I started yelling at him to SHUT THE F*** UP! He left after a day or two. Even the nurses were appologetic. My next roommate was ok, he liked it cold too. The day after my surgery (probably 10 hours after it) they were at me to start walking. I had been cut open from just under my sternum, down about 8 inches to my navel, they made a sharp right and went another 10 inches or so. That was for the resection of my liver (60% was removed along with the gallbladder and a few other things). I also had a pump installed on my left side. That left a 5 inch incision. Then, there was the colon surgery that sent from my navel to right above mr. you-know-who. They really don't use stitches that much anymore, they use staples. I tried to walk, but I could only take about 10 steps and I almost passed out. Back to bed. I was on morphine for pain, but it turned out that I was allergic to it and I got real itchy. They had to put me on something else. They also gave me benedryl at night to help me sleep I think. Well, it felt like I was on acid. I woke up after a horrible sleep and the floor was moving like a bowl of jell-o. The pain in my abdomen was so bad, I couldn't believe it. Once again, get up and walk. I managed a little more that day. One thing about hospitals, you do not get any rest there. All day and all night, they are waking you to take this temp or blood pressure or empty this fluid or that or do bloodwork or something. Plus, I had a tube pretty much coming out of everywhere they could stick a tube. The good news was that my asshole was still in the same spot! No colostomy bag. I had to have a tube stuffed up my nose and down into my stomach to remove the bile and other fluid that builds up. I was not able to eat, and I got only ice chips and those were limited. My bowels, for some reason, would not kick back in. One thing I had to do to be allowed to go home was to 'pass wind' as they put it. Now, to be honest, that is one of my 'gifts'. I'm more used to hearing requests not to pass wind. I was stopped though, nothing was happening. I was supposed to spend 7-10 days there. I was so ready to leave by that time that when it came and I was not going, I freaked out. They send a shrink it to try to help me. I think I realized then that with cancer, you don't know what is going to happen until it happens. They can't predict how you will recover or react to anything. I was so bummed I was still there. I didn't get out for another 6 days. When I left, I was in so much pain. I remember being driven through the city and every bump hurt me. I just wanted to puke. After I finally got home, I did puke.
more to come...

So I finally got home to Dana and the boys, back into my own bed and to the backyard and fresh air. It was truely fantastic. They had just taken the staples out of my stomach and had tape sutures on the wonds. I also had a section that did not heal properly, so I had a home nurse come in once a week to change the dressing. Dana did it the rest of the time. She had to take a section of gauze that was about 14 inches long, soak it in saline, then feed it into my abdoman using a 8 inch long q-tip. This went on twice a day for about 6 weeks. My stomach muscles hurt so much due to the fact that they cut throught everything in order to operate. It really hurt a lot. The kicker is that I could not take pain medication because it caused, you guessed it, constipation. I dropped about 30 pounds in the hospital. My digestive/bowels were still not right at all. I got home in early October, maybe the 8th? Not sure. I hung out and tried to rest the best I could. I had many stomach issues and did not take a decent shit at all. I finally went back to work after Thanksgiving. I worked for about 4 days when one morning, I got up and my bowels felt strange. It was like I was in the middle of farting...and it just stopped. I knew something was not right. I went to work and by 10 am, I started to feel intense pain. I thought my pants were too tight. I went to the store and bought bigger ones and went back to work. I started to get sick to my stomach. I left work at 1 pm and went home and threw up and went to bed. Later that night, I was up throwing up for about 5 hours straight. I went to the emergency room in NJ first thing. My sister came by to watch the kids at 6 am. I was hoping to get to SK, but the traffic sucked and I knew MD's in NJ. I spent all day in the emergency room. They had me drink a bunch of barium so they could scan me. I couldn't keep anything down. After the scan they shoved a tube up my nose and down my throat. It was the single most disgusting, invasive thing I ever had or ever will experience. They discovered I had a bowel obstruction caused by scar tissue from the liver operation. I wanted to get to SK to have that surgeon fix the problem. I waited 3 days with the tube up my fucking nose. They could not take me. I finally had it done in NJ and spent another 9 days there and lost another 20 pounds. It really sucked but it did help fix what was going on for me.
more to come...

So then I had to spend Christmas and New Years still feeling horrible. My abdoman hurt, still does almost 1 year after the surgery, but at least I was shitting a little better. I was out of work until mid January. I probably could have stayed out longer but I needed to get back to resume some sort of schedual. Even before I got back to work I have to start with my next 6 month cycle of chemo. This time they were using the newly installed pump. That is a trip. the needle they use to fill it is about 5 inches long. It's fucking huge. It also has to be put in just right, totally perpendicular, or it doesn't work properly. I still had tons of pain and the drugs they gave me for that, percocet, cause constipation. A no win situation for me. I kept up treatment until April 2005. That's when I found out I have cancer in my lungs too. I have treatment soon so I am cutting this short.
more to come...

5/4/06:
I haven't added on here in a while. So I started up with more chemo to try to clear the lungs. I went on Erbitux which gives a horrible rash and fucks with your skin and your nails and good old CTP 11 which just fucks with your digestive system so you don't know if you should shit or if you can shit. I did about 37 rounds of that, then they decided to cut me open last week adn remove part of my right lung and my lymph nodes in my chest. I can't write any more, I'm sick of this