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Mucinous Appendiceal Adenocarcinoma

My Story by Gary S. - May 2007

Join Gary on our Appendix Cancer Support Forums

As you read the forums, you will see various forms of this disease described by forum members that are in better or worse shape than you, or your loved one is in. I was asked to submit a personal story, relating my experiences. I don't think the request was because there was anything unique about what I've gone through compared to other members. I'm not sicker by a long shot. But I have developed a compassion for the new members. You're scared. This is something you haven't faced before. And, like me, you might have already had your plate full with the problems life throws at you that had nothing to do with cancer.

This isn't meant to be an inspirational story. If you're like me, you've already received a bagful of those from friends, relatives, counselors, etc. (the list is endless). I started out listening, reading, and watching what was provided to me, but then stopped. Give me a break! Talking to someone going through is better than any of that feel good ... media. There. I used a nice word.

I'm going to give a brief history leading up to the burst of my appendix, not because it matters in describing the disease. It will describe my state of mind at the time of the burst.

I was a well-paid systems programmer, who had a stroke in November 2005. I was on medical leave for two months, came back to work on January 3rd, 2006, and was canned on January 13. Florida is a work "at will" state, which means you can be let go for just about any reason, and don't have a lot of recourse. I still stuttered and limped from the stroke. At times, I seemed dazed and confused. For what it's worth, I have since overcome those problems with a lot of concentration and hard work.

Rather than using up savings looking for another systems position (they are getting rare, and are usually located somewhere other than where you live); I invested my savings into starting a hurricane protection business. The business started off fantastic, but I started a hurricane protection business in a year that had no hurricanes. Business dropped off drastically.

Then, in September my wife decided we needed to separate, taking our three girls with her. She just didn't want to talk about it. So, now I was left living alone in our home.

I hope I've adequately described my state of mind. On the morning of September 22, I woke up with what seemed to be a gas pain centered maybe above my bladder. It wasn't the first time I had ever felt it, but I didn't really give it any thought. It was gas, and it would go away. I was up and down a ladder that day working on a home installing hurricane panels. I took off about an hour early that day, because I just didn't feel very good. I tried eating a bowl of soup, but just couldn't finish it. As the day went on, the pain just wouldn't go away. That evening it got worse. I tried to use the bathroom. Nothing. I thought; if I could throw up maybe it might get better, but I wasn't nauseous, and couldn't get sick. Then the real pain hit!

I made it to bed, curled up, and thought about the state of my life. I prayed to die, and waited for it to happen. I had called my wife earlier to tell her that I thought something might be wrong with me, but could only leave a message. I figured she hadn't wanted to talk to me.

The pain seemed to be fading, and I felt mostly unconscious when the phone started to ring. The phone was right beside the bed, but it went to the answering machine 3 or 4 times before I could roll over and get it. And when I did, the pain started coming back. It was about 11:30 when I finally picked it up, and it was my wife. I told her something was wrong, but that's about all I could get out. She came over, saw me, and dialed 911. That just hadn't occurred to me.

The pain had come on so hard and fast that I just made peace with the Lord. Sounds dumb. Sounds like a ploy to get my wife back. It wasn't. I guess you had to be there. From here I have to relay what I was told happened, because I was semi conscious, at this point. I remember how I felt, and that was about it.

I was ambulanced to the hospital, given four different pain injections. Nothing helped. And why couldn't I have just died? I was ready. My white count and temperature was normal. Later it was decided this was because my system had started shutting down. Since the pain was central, and I wasn't nauseous, a ruptured appendix wasn't at the top of the list. Eventually I was CT scanned, and the ruptured appendix was discovered. I had surgery, which included irrigation for the ensuing peritonitis that had occurred. A drainage tube was installed to remove any further infection. I was sent home about 4 days later, and my family moved back in, but supposedly only until I got better.

A week after that, I went back to the surgeon to have the drainage tube removed. That is number two on my worst pain list, but only until the tube was out. Immediately following that removal was the time the surgeon picked to give me the news. Cancer. And the tumor made the required size to recommend a right hemicolonectomy. I cried some, but was mostly numb from the news. My state of mind was still that I had been cheated out of death. Now I feel a need to explain this. I didn't want to die. I wasn't suicidal. I was ready to die, and it didn't happen.

Cancer. It happens to someone else, not you. I was healthy. I was 50, had six-pack abs and a great tan from working outside. This wasn't happening to me. And besides, didn't the surgeon get it all; so it's gone, right? I had never had surgery; rarely even got a cold. My mind was working just fine, and I was going to do some research and find a way around having this surgery!

I requested a colonoscopy and my colon was clean as a whistle. I had taken fiber supplements for the last 20 years, and some people consider me to be a vitamin freak. I had a PET scan. Nothing. I had blood tests that included cancer markers. My CEA number was 2.6. Gimme a break! I want to get on with my life, or figure out how to live with getting cheated out of death. (Yes that was still bothering me, to put it mildly.)

I saw a counselor, and relayed the episodes of the last year. She appeared floored, and asked me why I should feel any different. Then she gave me practical advice. Go to Social Security immediately, and file for disability. And I have to pass that advice on to you, the reader. The day that you file is the date used from then on for any benefits you might be qualified for. Delay it, and the date gets delayed. Got it? Good!

There are two things that made me decide to have that surgery - the Rare Cancer appendix cancer forum, and a high school buddy of mine. I found this forum through the research I was doing for alternatives. Here were people like me. But there was a difference. I was entering a "kingdom", complaining about not having shoes, and finding that people there didn't have any feet. I know it's an analogy; but here were people that had been through it - some were in similar shape; some were in worse shape. One of my initial posts had to do with why I really needed the surgery.

My friend from high school had worked as a Social Security disability case manager. Day in and day out he saw cases of people that had colon cancer, postponed the surgery, and the cancer metastasized. He had some constipation problems, went to the doctor, had tests, and colon cancer was found. Without a second thought, he had surgery before the week was out. Then he stayed on my ass till I agreed to have it also.

The surgery was November 3rd. While recovering in the hospital, I obtained an MRSA staph infection, and my main incision was reopened and left open. Before being released, I was provided with a wound vacuum for that incision and a home health care nurse to change the sponges 2-3 times a week. That was now my third worst pain. I had the wound vac for about a month, which cut about 5 months off the healing time for that incision.

The surgeon removed 2 1/2 feet of my colon, and 14 lymph nodes. Three lymph nodes were positive, with one of them showing a potential for metastasis. I was provided the terminology 'Stage 3 cancer', along with a recommendation for chemotherapy. Would this never end? I was given twelve sessions of FOLFOX, two weeks between sessions. Before I started, I was provided with some possible side effects and a statement - "everyone's different". Man did I get sick of that "everyone's different" response. I spent my life giving definite responses, and following through on them. I lived by a saying "Mights are on a chicken's ass". Come on doc! Give me a definite response to count on. Nope.

I started my first session at the end of January. I had my ninth session today. So I'm going to list out the side effects I've experienced. Your mileage may vary. (By the way, over time, my mental outlook and my relationship with my wife improved immensely.)

My Side Effects

Neuropathy: Yes, it's real, and it's strange; and, initially, it's a little scary. Let your oncologist know when you first experience it. He/she may reduce the amount of Eloxitin in your cocktail. Drugs that counter neuropathy are Neurontin and Elavil. I refused to be prescribed Neurontin because I've known people who have taken it and just couldn't stop taking it. I chose the Elavil. The neuropathy was reduced down to being cold-induced. I went to Walmart, and got about 6 pairs of gardeners gloves for $3, and keep them handy for when I get something out of the fridge or the freezer. You only forget a couple of times before remembering to wear them. I have stone flooring in my office and I wear flip flops when I'm sitting at my desk. Ok, so you may be afraid of this becoming a permanent condition. I've played the piano for over 40 years, and I've led a 22 piece big band from the piano for the last 15. Nobody's complaining about my playing. In fact, I think this whole experience has motivated me to play better. I'm also a church pianist for a contemporary service, and that has really motivated me. Permanent? Folks, cancer is permanent.

Diarrhea and Nausea: I've thrown up once. My fault. I went to the movies after a chemo session, and got a large tub of buttered popcorn, and a large drink. I think I threw up once from that before the cancer. I love the stuff, but getting sick from of it, cured me of trying it for 2-3 months. The diarrhea is real. I also happen to have contracted a clostridium difficile infection during my second stay in the hospital. And it's in my colon. The most wonderful drug in the world to me is Flagyl, because it will control my infection and diarrhea. Immodium really doesn't do it for me, because of this condition; but it might work for you. Nausea can sometimes be controlled with Zofran or Compazine. Ask your oncologist to prescribe something for you. You might be in a state that allows for Marinol, which is great for the appetite. Oh another thing. I get my sessions on a Monday, and wear a pump home, pumping more 5-FU till Wednesday. When I get the pump taken off, I'm offered an IV of Zofran. I started refusing it, because I really couldn't tell the difference. Not getting it saves a little money.

Mouth Sores: I eventually got them where my lips meet; first on one side, then the other. To prepare for the almost "for sure" of the mouth sores, I got a prescription for the "magic mouthwash". Your oncologist may give you a prescription for this. My advice is don't wash your mouth with this stuff. It's liquid lidocaine. I thought my tongue swelled up, I thought my throat was closing up, and I didn't know when it would end. Advice. Dip a Q-Tip in it, and swab the affected area. This is much more effective. For those mouth sores where my lips met, the best remedy I found was triple antibiotic ointment, probably because of the petroleum base.

Sandpaper Mouth: This can lead to the mouth sores. Keep water handy all the time, even when you are sleeping. (Especially when you are sleeping.) Wake up (you will anyway), and take a sip.

Hair Loss: This one is strange. The FOLFOX says you might have some hair thinning. The crown of my head already had thinning hair. I think I've noticed a possible thinning in my eyebrows. Just meant that I trimmed them less, old fart that I am. What was weird for me - one day I noticed that I had lost the hair on the outside of my calves. It looked like I had shaved them, yet the inside of my calves still had lots of hair. It was like a Nair commercial. Then it started growing back. I still have arm hair (maybe a little less), chest hair, and a VanDyke beard.

That's what I've dealt with. My last piece of advice is to insist on getting a port surgically implanted. It is fantastic, compared to getting this stuff pumped in through a vein in your hand or arm. Before this is over, those veins wear out and may collapse, but the port doesn't. The port is worth it!

Two things I've thought about regarding early detection. These may be argued, but other people have recognized them. I mean, when you get this kind of cancer, you really don't have any advance notice. So here they are, and folks can argue about them all they want. (1) A change in your body odor. Until two or three years ago, I didn't feel that I had body odor. I didn't use a deodorant or an antiperspirant. Then I thought I started to stink. Didn't know why. But it could have coincided with the growth of the tumor. Since the surgeries and all this chemo, I'm back to not having body odor. (2) A change in your blood pressure. Until two or three years ago, I was a 120/80 guy. Maybe 114/70. It started climbing. I attributed it to the pressures of work and life. The day of the burst, I was 156/104. After surgeries and this chemo, I'm 120/80.

I hope this has helped you. Maybe you're a little less scared now. I'm happy to correspond with you.  You can contact me through the forums or by using the Contact link above.  (Make sure that you notate it to go to Gary.)