IT IS WHAT IT IS

There’s a lot of cold hard facts and some darkness contained in this post so continue at your own risk. We had the appointment at the Cancer Institute of New Jersey. I must say they were very thorough. There were two doctors involved. They both examined me, questioned me, read all the reports and looked at the actual scan pictures. They spent a lot of time with us and never rushed us. By the way, since I had the pictures in my possession the day before I took a look at them. Upon careful, concentrated examination I was able to confirm that there were in fact some pictures taken. Beyond that I had no idea what I was looking at. We didn’t learn anything that we didn’t already know. The good news is that they confirmed there has been “significant” progress made since diagnosis. In fact, Dr. Elizabeth Poplin, the main doctor, commented that judging from the scans, in particular the liver scan, I started from a situation which was “very close to something bad happening”. She was saying that I was close to death. She said that Dr. George, my current oncologist, “brought me back”. When I think back to how I was feeling at that time compared to now, when I compare my liver function blood tests from then to now, she is probably right. The bad news is that they confirmed the cancer will get “smart”. It will sooner or later find a way around the chemo and start to grow and spread again. That’s what this kind of cancer does. There is no cure for it. It does not go away. But we knew that. Dr. Poplin discussed treatment alternatives. According to her the only reasonable options were variations of the chemo drugs used. There is no expected benefit from radiation, surgery or any of the less conventional approaches. In other words, what we are doing now is what we should be doing. She did not recommend doing anything different. Although it would have been nice if she said there was a good shot at a cure with a different approach I was not expecting that. It is somewhat comforting to know I’ve been advised properly. The simple fact is that complete recovery from this disease would be a miracle. Dr. Poplin pointed out that we can still hope and pray for a miracle. She said something that we knew and is very obvious when you think about it but the way she said it really impacted me. She said that if there is going to be a miracle, it doesn’t matter what they do. That’s so true. God doesn’t need doctors or chemo or anything else. We then discussed my present condition, specifically the worsening side effects. Dr. Poplin commented that my body was very “beat up” now. That’s actually the nicest comment I’ve ever gotten from a woman about my body. I am at the point now where fifty percent of the time I have almost no energy, strength or stamina. The other fifty percent of the time I have very little. What is more troubling to me though is the neuropathy. Although this is a new problem, Dr. Poplin confirmed what I had read previously. This side effect takes a long time to appear. It’s been seven months in my case. It also takes a long time to go away. It’s been known to linger for a year or more after stopping chemo completely. She warned me that it can get so bad that I could lose the use of my hands and/or feet. She said I should not wait until it gets to that point before doing something about it because even stopping chemo completely would not solve the problem for some time. So, what can be done about these side effects? It may be possible to adjust the drug combination used in my treatments in an attempt to eliminate the drug causing a particular side effect. There are many other drugs to choose from. Dr. Poplin pointed out that in addition to the wide variety currently in use, Cancer Institute of NJ conducts many clinical trial for new drugs, including phase one trials that other places cannot participate in. There are several problems with tinkering with the drug combination. There is no guarantee that a new drug will be effective in fighting the disease. There is no guarantee that we will pick the right drug to eliminate the side effect being targeted. Any new drug will have its own side effect. Dr. Poplin said it makes more sense to take a break from the chemo. This is something that Dr. George also said should be done at some point. I must confess that this is scary to me because I fear that I would be jeopardizing my chances of survival. Actually I didn’t have to confess this. Terry told the doctor that I felt this way and I don’t recall ever telling Terry that. After the appointment Terry and I sat in the car and discussed things. Terry is more convincing than the doctors. I will be taking some time off from chemo. As the doctor explained, we have to try to find a proper balance between fighting the disease and living life. It’s the quality of life thing that cancer patients hate to hear. It’s hard for me not to fear that I will be compromising the fight. But I think it’s the right thing to do. I read or heard it said somewhere recently that there’s no point saving a life that is not worth living. I do not want to live a life spent in bed because of weakness. I do not want to live a life without the use of my hands or feet. Don’t get me wrong. I would gladly live such a life if it meant I would continue to live. But it wouldn’t mean that. It would probably result in death anyway. There are also some sound medical reasons for taking some time off. Dr. Poplin pointed out that continuing treatment non-stop could eventually lead to kidney failure or some other side effect which would force us to stop. Also, a break may have the effect of prolonging the effectiveness of the drugs by not allowing the cancer cells to get “smart” to them. Terry pointed out some of the more positive aspects. It’s outdoor weather time. I love working out in the yard and maybe I’ll be able to do more of it. This is our time of year for enjoying the yard and the pool. So on Tuesday I’ll go for my next treatment and talk to Dr. George about the best way to take some time off. I don’t know if she’ll suggest extending the time between treatments or simply staying off the chemo altogether for a while. It‘s ironic. I was apprehensive about starting chemo, now I’m apprehensive about stopping. The most discouraging aspect of all of this is that I continue to hear from doctors how well I’m doing. And then they say “but it won’t last”. Then again, in order to survive long term I have survive short term first don’t I? When Terry and I got home from our appointment I showed her an entry on an esophageal cancer forum that I follow. It was from the wife of a man who was diagnosed with adenocarcinoma, the same as me, in September of 2008, the same as me. Hospice has been called in for him. As I said, I love working out in the yard. In prior years, when I finished trimming a shrub I would step back and admire my work. I’ve been trimming shrubs for the past three days and at the end of the day I step back and admire my work. And then I thank God that I’m here for another season to do it. It doesn’t matter that I have to limit how much I do and take frequent breaks. During one of those breaks today I sat on a rock in the middle of a garden overlooking the pool. I thought to myself that it would be a great place to be buried. But it’s not near my father so it won’t work. In the balance between treatments and living that I hope to achieve Terry and I will be spending much of this summer out back enjoying our yard. And I’ll be admiring my work. Please stop by. We’d love to see you and share it with you. I want everyone to recognize the fact that for me to survive this disease long term would in fact be a miracle. It’s important you recognize that because wouldn’t it be a shame if you are privileged enough to witness a miracle and you don’t realize what you are seeing? I’m going to try to show you one. Your prayers have gotten me this far and I hope you’ll continue them so I can go further. Thank you. ------------------------------------------------------------------------------