Post Chemo Update October 6th 2008

The original point of this blog was to keep my family and friends up to date regarding my medical progress; hence the name of the blog. I realize that actual medical progress blogs have been few and far between these days. In keeping with the original spirit and intent of this blog, what follows is an actual medical update. Please note the time and date. Who knows when this might come again.

I had chemo today. This has been my fourth round of chemo in a row since I began again and the longest I have gone consistently; in other words, I would have skipped a round by now. In total I have had 12 rounds of chemo since beginning April First. I should have 16 but I skipped two rounds for David's wedding and skipped another two rounds to go back for Scott's funeral. On Wednesday I will be meeting with the oncologist, along with Dad and David, and and that time I hope to figure out what is going to happen next. Ideally, I would be on a higher dose of Standostatin by now, but my body can't handle the increase so I am still stuck on small daily doses. There are two aspects to my disease. One is the actual tumor itself, which is a neuroendocine, carcinoid tumor, well differentiated, located in my prescaral area (between my tailbone and my rectum). This is a slow growing tumor and by itself will not kill me right now (from what I understand), but does cause me complications and will kill me in the end. The second aspect is the cancer which has spread to my liver and bone which is of immediate concern and why I am having chemo. From the research I have done, what kills people with this type of tumor is not the tumor itself, but the liver cancer and/or the bone cancer. It is far more likely that I will die of hepatic shock due to the cancer in my liver then I would from the tumor itself. The treatment for this is aggressive chemotherapy, followed by more chemotherapy. Ideally at some point I could at least stop the chemo for a while. I don't know if that is possible, from the research I've done. If the cancer in my liver can be controlled, perhaps a break might be possible for a short while; a year perhaps. But again from the research I've done, some form of chemo is going to be in my future for the rest of my life. 

As you know, I hate chemo. I hate it even when I have no symptoms, like today. I hate every aspect about it. And I hate the fact that I have had to put my life on hold. I have not worked since January, and tomorrow I had hoped to be on a plane to New York for a vacation. That is not possible now since I really need to focus on treatment. The prospect of having to have regular chemo treatment for the rest of my life is daunting and discouraging, to say the least. I keep saying that at some point, I am going to tell the doctor I don't want to continue any more. But, I know that would lead to a lot of pain, and eventually, dying, which is not an option for me right now. So I am stuck. I hate this but it's going to keep me alive. I hope that perhaps there is a third option. I haven't gotten the impression there is. Right now, I am committed to continuing with this course of treatment. I don't know how I will feel tomorrow, but that is how I feel right now. It helps, of course, that I feel generally OK and don't feel sick. When I feel sick is when I get discouraged. 

I am saying this out loud because sometimes I get frustrated and say things that give an impression that stopping treatment is some how an option for me, with the eventual result. As you can imagine this causes a lot of grief for my family and friends. Causing any more pain for my family and friends is the last thing I want to do. I have always said I think it is harder for someone to watch this then to go through it yourself. I know when I say I want to stop treatment, it makes it even worse, because that means I would be choosing to die. I don't want to die, but I do need and want some sort of option that will make this easier to live with. Sometimes, I get so frustrated, I do want to die, but that always passes quickly. I don't really want to die, and honestly, if I was going to do that, I would have done it already. Clearly I have neither the desire nor the balls to make that particular decision. I just want to do this in a more efficient, less painful way. 

OK, that was a long ass post... the Red Sox are up two going into the 8th, but I can't watch the game because Time Warner cable has an outage here... so I am forced to listen to it on the radio and online. GO SOX!!

I love you all.