Intestinal Cancer

Iguess I feared the worst the day I made the appointment to see my family doctor. It was the beginning of November 2009 when I felt a feather-light pressure inside my intestines. Not directly on the anus, but somewhere inside. It was hard to really locate it for my doctor. She set me up with an appointment two days later so she could do a Colonoscopy.

I went in two days later for my appointment and my doctor found "something" right away. She said that I would probably have to be operated on. She told me to go home, pack a bag, and go immediately to the hospital. She said she would call ahead and that they would be waiting on me when I got there.

I felt as if someone had punched me in the stomach. I had left my wife and moved out of the house the end of March 2009. I have an apartment and live alone. At that moment, leaving the doctor's office, I felt as though I had nowhere to go and no one to turn to. I decided to go to my oldest daughter Jennifer's house and tell her the news. Of course, I could hardly talk to her because of the tears; I was so upset. She told me to go home, pack and she would pick me up; we would go to the hospital together.

I was glad that Jennifer went with me because of all of the tests the doctors were doing I could hardly remember everything they were telling me. I told the doctors they could discuss all of my medical questions with Jennifer. The doctors in the hospital confirmed that I had intestinal cancer. It was decided that they would start me with chemotherapy in the hopes that it would shrink the tumor, making it easier to operate. The chemotherapy would be every two weeks, starting on Tuesday mornings and ending by Thursday evenings.

It was now the beginning of December when I went to the hospital for my first chemo treatment. The treatment was long but it seemed that I would not have any of the usual side effects, like vomiting and diarrhea. I did start to lose some hair though; I started wearing a bandana so as not to lose hair everywhere. A little background here: In January 2007 I had an operation to remove a cyst from my left buttocks. There were no complications and the wound healed. The week after the first chemotherapy I noticed that this area was getting infection underneath the scar on my buttocks. I did tell Jennifer about it, but thought, or hoped, that it would go away.

Well, by the weekend the infection was so bad that I could barely walk and was incoherent most of the time. Jennifer and her husband, Michael, was trying to reach me on the telephone and decided to come to my apartment to see what was going on. They took me to their house so they could keep an eye on me but things were getting so out of hand that they decided to call an ambulance to take me to the hospital. After being admitted to the hospital, I was taken to a room near the ICU so that I could be watched. Sometime during the night the infection had worked its way up and through my skin. Now that the infection was draining I started to get better.

They transferred me up to Station 3 in the hospital. During the next visitation, the surgeon told me they were going to do a small operation to enlarge the channel so that the infection would have even more drainage. The surgeon also said he wanted to take a look to see exactly where the tumor was located. I was scheduled for the OP the next day.

They picked me up the next day and took me to the operating room. I was not afraid. I have had so many other medical things happen to me and this was just another. I was given a spinal block because the operation would not last very long. I woke up in the wake-up room and after the nurses saw there were no complications from the OP, I was taken back to my room.

During the next visitation the professor and the head surgeon told me that they were going to have to operate to remove the tumor. In addition, because the tumor was so close to the anus, they were not going to be able to save it. This meant they were also going to perform a Colostomy. It would mean I would have to have a Stoma for the rest of my life. They planned the surgery for after the New Year. The nurses were still cleaning the wound on my buttocks twice a day. It was supposed to heal from the inside out. I was able to talk the doctors into letting me go home on Christmas Eve and the Christmas Day for a few hours. It was nice to spend some time with Elisabeth and Jenny and their families during the holidays.

It was still difficult not to get upset about what I was going to have to go through after the holidays. I felt in my mind that I had been through enough already with the Histiocytosis and Osteonecrosis diseases. Now this. Cancer? Why me? It was good that I was still seeing my psychologist on a regular basis. I have been with the same psychologist since the problems with the Histiocytosis began. He has turned from being a doctor to becoming a good friend. I was able to see him after the news that I was going to be operated on and endure the Colostomy. It was a difficult session for the both of us I think. The only thing that really helped was the hug he gave me as I said goodbye. The next time I would see him would be in six weeks.

The doctors in my surgical team had scheduled my operation for the 4 January. I was admitted on the third and after signing all of the release forms for the operation, I was ready, physically, for the next day. I was taken pretty much mid-morning to the operating room. The last thing I remember is the head surgeon asking me how high I wore my trousers around my waist. With a black marker he drew two small dots. This would be his guide to where he was going to make the opening for my stoma, just above my waist line. The surgery took around four hours with three surgeons.

The next thing I knew I was waking up in the ICU. The pain was not too bad as I was getting all of the pain medication I wanted. Of course, the medical staff would like a person to get along with as little as possible. However, it was different for me since I was already using a morphine patch and two other strong pain medications. Therefore, with what I was getting in addition I was alright. I think the first two nights after the operation were the worse. I continually had the urge to go to the bathroom and wanted a bed pan. The nurse grudgingly brought it, and then in no certain words, told me that it would not work. I wish now that I could remember what she told me that night. More or less, I would not be able to go like I had, but would be crapping into a bag on my stomach. No comforting words for for me. I was still trying to clear my head of the drugs that had kept me under during the surgery. There was one bit of good news though while I still was in the ICU. Jennifer found out that the Colostomy could be reversed. That was very good news. Nevertheless, I will have to wait until the chemotherapy is finished. A minimum of a six month wait at that point. Something for the future. I spent two days in intensive and then another day in a "watch-room". Here would be determined when I would return to Station 3 for my continuing care. Which to my delight was the very next day?

Iguess I should at this point let you know that Jennifer was with me all of the way. She was with me with most of the discussions with my doctors and was visiting me every day before and after the surgery. On the days that she could not, her mother Ulla, filled in. After all, even though I have separated from her we do not hate each other. It was good to see her. Even Erik, my son, came to see me once in the ICU. It was good to see him also, as we had had words about his daughter. That is a different story.

It was good to be back in "my" room. I was lucky to have received a two-man room. Most all the other rooms are three-man rooms. I still had some pain after the surgery but most of it was the 27 staples that were holding my incision together. In addition, I was still getting the wound on my buttocks cleaned twice a day. However, my progress was getting better with each day.

The newest problem I was having was that of coping with my stoma. I could not even look at it! I did not know how I was going to get along with changing the bags and changing the "system." I have a two-part system. Part 1 is a stomach plate. It has a hole cut out in the middle and is glued over the stoma. Then the second part is the bag, which is attached to the stomach plate. At first, I relied on the nurses to change or help me change the bags. One day, my roommate had some minor surgery and was out of the room for a few hours. The nurse in charge of the floor took this opportunity to show me how to change my stoma system. She took all of the time I needed, and when we were finished, the stoma was not as terrible as it had been in the beginning. I was now three weeks in the hospital.

It is usual in Germany that after having major surgery as I had, you are sent to a rehabilitation clinic to continue your recovery. Luckily, I was sent to a clinic only 20 minutes from my home. I was in the clinic for three weeks. I was in the rehab mainly to train my stomach muscles, which had been cut during the surgery, to learn to care for my stoma and to get my strength back. After three weeks in the clinic, I was so glad to be back home.

After being in the hospital three weeks and in Rehab three weeks, it was time for the next steps in my recovery. The very following week after coming home from rehab, I was again in the hospital, this time to continue with the chemo therapy we had started in December.

The plan for my in-patient chemotherapy is for every 14 days, from Tuesday mornings until Thursday late afternoon or early evening. In addition, this is for "many months" as my liver doctor told me. The surgery I had was to remove the tumor and now the chemotherapy was to get rid of the liver metastases. I was not really afraid of having the chemotherapy as I already had two. One was in 2002 and the second in 2005. The first two therapies were as out-patient. I went in at 8:00 a.m. and after four to five hours I was ready to go home. They were both every three weeks, so it was not really that bad. Now, this in-patient therapy is very difficult for me.

I know that I need the therapy, but on the other hand, it is as if I am losing three days of my life. I find it difficult to keep my self occupied with things to do in the hospital. After I am "hooked-up" on Tuesday, I go through five different bottles and pouches of chemicals before the final pouch is hooked up. If I am lucky, the doctors can start it in the late afternoon or early evening. It takes 48 hours for the last pouch to empty. The drip is very slow at 15ml per hour! So, now you can see why I am on the verge of going stir crazy.

I am not letting the hospital visits or the chemotherapy to stop me from living my life as I had planned. I have had support, all be it fro a distance, from my mother and sisters, as well as family and friends in the US. My family in Germany help as much as possible and I am still seeing my psychologist. I even had a belated 57th birthday party with my closest friends, something my psychologist has been after me to do since the start of my severe depression due to my Histiocytosis sickness.

As of this writing, I have booked a flight to Madrid on the 7th to 14th of June. One week to explore, visit the many museums and take many pictures. I need this trip to show myself that I can travel with a stoma and for my soul. I have other trips planned as well and will take them as the come. I can show every one that I can live alone and take care of my self. I guess my advice to anyone reading this is that a person has two options in life. You can board yourself up in your house or apartment and lament about how bad life has treated you. Soon you will be forgotten by your friends and become a burden upon your family. On the other hand, you can take up where you left off. Living and enjoying life with family and friends. Moreover, if you need help, then ask them for it. I did and it is working for me.

Re-staging is a term German doctors use to describe a battery of tests to determine how the chemotherapy is having effect. On May 11th I had my re-staging in the hospital. It consisted of two Computed tomographys, one of the thorax and the other stomach. There was also a Sonography and in addition, blood work and a urine sample. The Sonography was mainly directed on the liver. The doctor searched repeatedly on the place where the metastases were, but was unable to find it. He said that if he did not know me he would say there was nothing there, which there was not. This was to be the first of very positive results. My doctor called me on the 14th and told me the both of the CT's had also turned out to be very positive.

My doctor called me on the 14th to tell me about the CT's and to tell me the next step. He said that my case would be brought before the cancer board on Monday, the 17th of May. So I will have to wait until then to find out if and when I will continue any kind of therapy.