Sunday, December 17, 2006
Not exactly where I started
I am not exactly where I started when I first began keeping a blog. There are some similarities. I am trying to build up a walk/jogging routine that I can live with. I am trying to think more about habitat gardens and less about melanoma. I am still in search of that elusive new normal. In a way it makes sense that I'll be going back through old photographs for a while, possibly having some repeats as there's no way I can remember which ones I've already posted. The main thing I'm photographing these days are the birds and I'm not very good at it. Part of it is the places they sit still are in branches were they feel protected. I can photograph them through my windows but I find that less than satisfactory. In my last blog entry I said that I needed to stop thinking about melanoma so much but that doesn't mean I'm not going to be checking the MPIP or blogs that people I've gotten to know through that site keep. These are people, most of whom I'll probably never meet, who have come to mean a great deal to me and I want to know how they are doing and if there is anything I can do to help, I want to do it. I also like to find information for people and offer what support I can to the newly diagnosed. What I need to do though is find more balance. I also need to focus on the fact that I am NED. I need to find a way to believe it. One of the many things that has concerned me off and on has been visual changes. My eye doctor has prescribed some meds for me because I have chalazions. Apparently these little bumps that keep popping up under my eyelids are yet another sign of immune system dysfunction and treating them may help my weird visual issues which have concerned me. Pretty much everything that's wrong with me could be explained by an autoimmune response and the irony is that it may be a good thing for my melanoma prognosis. If I look at it like that, I can believe more and more in NED. I'm sure I've mentioned this before but the frustrating thing for me was that I chose not to do interferon thinking I stood a better chance getting back into fighting form after my LND. When that didn't seem to happen but instead I started to fall apart physically I assumed that I was having a recurrence. It is finally sinking in that falling apart may have been a good thing. People get so sick on these tough immunotherapy treatments because the drugs are sending them into a strong immune system response, hopefully killing any lingering melanoma cells. Simplistic explanation from a non medical type like me but I think I have the gist of it. In my case it seems like my body did that on its own. I ended up with symptoms of peripheral neuropathy although nerve conduction studies were unremarkable. I've had some symptoms of fibromyalgia. Now I have the eye issues. All of this could be part of my body fighting and rejecting the bad stuff. I was surprised that I was negative for the antibodies I was tested for in terms of paraneoplastic syndrome because that would have fit in but just like nerve conduction studies can underestimate, people can also have paraneoplastic syndrome without testing positive for known antibodies. I need to focus on the fact that my body may be fighting this internal war but all signs are that it's winning. All I can do is keep putting one foot in front of the other and do the best I can. If I can hang on to the fact that the vitamin D deficiency and an autoimmune response can explain pretty much everything that's happened over the past 19 months, I can start to believe that I'm NED.