Surviving Cancer the Second Time - Supplement

I never received radiation as part of my treatment. The university doctors recommended radiation only at the groin area since they believed the lymph node near my heart was a false reading in the PET scan. However, the two doctors that were treating me which included the radiation oncologist disagreed. If the single node was a false reading then why did it go away after two cycles of chemotherapy? Radiation would have to cover most of my body to include this one lymph node and the consequences were pretty grave. Mostly, it could permanently damage the bone marrow.

So the radiation was out of the question and for two months I enjoyed a vacation hoping that I didn't need anymore treatment. But I was crazy to think nothing else was going to be done. It is not surprising how delusional you can get when you are in this situation.

I got the first clue to what they were going to do when I had the monthly port flush. The nurse told me she heard the doctor on the phone talking about a different chemotherapy treatment. It most likely was going to be the ICE regimen but she wasn't certain. I went and looked it up and was not too pleased on what I found out. It was a treatment for aggressive and recurring lymphomas. It required an over night hospital stay with a one day drip. The primary concern was the drugs could damage the kidneys and cause bleeding in the bladder.

By early December, I was called and told when to come in to see the doctor. The anticipation of what was going to happen next made me nervous. I dreaded what I was going to hear, and yes, the doctor finally decided on ICE. I told him about my concern with bleeding and he reassured me that another drug would be administered that would prevent or alleviate this symptom. So, as a early Christmas present, I was admitted to the hospital on the 16th. Initially everything seemed to go well. I stayed in the cancer ward where I had a room all to myself, courtesy of a large donation to the hospital. The next day I went home and then the fun began.

The first thing I noticed is it burned when I urinated. This lasted about a day and I dreaded every time I had to go to the bathroom. At least I didn't see any blood. The main symptom was how I felt which I can't exactly explain. I simply felt horrible. Not only did I sleep a lot but I moved in slow motion. I was in pain in ways that I couldn't describe and it was evident in that this chemotherapy hit me harder than what I was on before. For my first occurrence of Hodgkin's and the first three cycles of my second occurrence I was on the ABVD chemotherapy regimen. This is the chemotherapy that has a lifetime limit which forced me to go to ICE. On ABVD I lost my hair but not all of it. I lost most of my facial hair but I still had to shave. On ICE I lost my hair completely. I last shaved on the 23rd of December and didn't pick up a razor until the end of March. I was also hit harder in blood counts. I was used to having low white blood counts but with ICE they became almost nonexistent. I even became anemic. During one of these extremely low blood counts I was exposed and contracted the 24 hour flu. It was rough but I did, out of some miracle, get over it in a day.

Unfortunately I had do endure the ICE treatment three times as they pumped more chemicals into me. With names like, ifosfamide, carboplatin, and etopside, these sounded more like chemical names to me than drugs. Almost as if they were being pumped directly from a car battery.

Surprisingly, the only thing that was normal was my appetite. Unlike the nausea under ABVD, I actually had a good appetite and eating did alleviate the other symptoms. However, I did have another symptom that did not have to happen. I had serious stomach pain that would occur at all times of the day. Most of the time it would hit at around 3AM. I was prescribed vicodin and yes it did make me feel very good but the pain still persisted and I had a feeling as to what may have been causing it. Back in September when I was given a month and a half off from chemotherapy, I suddenly developed severe heartburn. I then took one of the antacids, where you take it daily for only a few weeks and then it should control your heartburn for about four months. Right before my last ICE treatment which passed the four month mark, my stomach pain suddenly stopped. Apparently, since chemotherapy affects your digestion, the antacid compounded the problem. So, my word of advice, don't take any of the long term antacids when you are on chemotherapy.

I was suppose to finish ICE by mid January but with my blood counts dropping so low after each treatment, I didn't finish until the first week of February. I then had to wait another month until the next PET scan. Despite that the second PET scan back in September showed no signs of cancer, I was still nervous about what was going to happen next. Without radiation, normal treatment was suppose to be eight cycles of chemotherapy. I had only six so far. I dreaded the possibility of having two more cycles of ICE.

During the following month everything slowly returned to normal, relative of course. After having ICE, the process was slow. I didn't feel that well until right before the PET scan, but eventually the blood counts returned to normal and the liver and kidney tests showed no signs of any problems.

On March 3rd I had the PET scan. Right before the test I talked with the doctor and he recommended that I should see the radiation oncologist for an opinion on possible radiation treatment to the groin area. Two days after the scan I was scheduled to see the radiation oncologist but he cancelled the appointment when he got the results from the scan. He said that I was fine, that I didn't need any further treatment. On March 11th I had my final appointment with the doctor. I was finally declared in remission. This was good news to hear and a relief. He said that I responded so well that the full eight cycles was not necessary. However, he did have one warning. He was concerned since I now had two types of Hodgkin's over the past fifteen years. He told me that I may now have to consider having a bone marrow transplant, but this is not something I have to have right away. It could be done at anytime but definitely it will have to be done if the disease comes back. Obviously I hope I don't get it again but if I do, the next experience is going to be completely different.