I started this blog a year and a half after my melanoma diagnosis. In less than a month I will have been a stage III melanoma patient for three years. At one level, I can look back on this blog and feel that I've made some progress in moving on with my life. I no longer talk exclusively about my health, even though this blog was started as a means of dealing with the aftermath of my surgery for node positive melanoma. It used to be that every post was about physical issues I've had which started after my initial recovery from the groin LND. Actually, now that I think of it, my first few weeks of blog entries were about trying to move forward. I was still hopeful that I would recover from the aftermath of my cancer and get back to where I was physically prior to the surgery. I lost the first two weeks of posts when I crashed my blog. When I started it again, I began with my melanoma history and was again fearful that I was having a recurrence.
At one level I've moved past the recurrence fears. I know that I can't trust my body to give me any information. That's not strictly true. Obviously late stage severe symptoms would give me cues but I mean subtler hints. I have learned to live with the fact that chronic pain and neurological symptoms have to be managed and that my symptoms change. Beyond good days and bad days, I have new symptoms which I have to learn to ignore rather than go into alarm mode. I know it could be a lot worse. I am one of the lucky ones. I had a poor prognosis going in and that prognosis improves with each year I go without a recurrence. I have several years under my belt and know that each change is not worth panicking about.
I also know that I have to accept that I can't keep trying to get back to some place physically that I perceive as meaning I've recovered. I've stopped keeping logs which mostly make me feel like I'm falling backwards farther and farther. The fresh starts didn't work out. I am losing ground physically, and although it could be a lot worse, it's not something I can track if I want to feel positive. In theory focusing on improvement not cause was a great idea. The problem is I'm not improving. Sure, I'm better in some ways but in terms of walking more or farther, it isn't happening. I thought if I could give up on ever jogging or running again and focus on walking at least every other day that it was a reasonable goal and I would feel better.
The problem is that I have found I actually feel better if I have little or no physical activity. That goes against everything I believed and certainly what the pain specialist and other doctors thought. The guiding wisdom is that people with chronic pain do better if they are as physically active as possible. The problem is that I do better if I'm not trying to be physically active. I'm not talking about overdoing here. I'm talking about moderate walks. When I stopped trying to have daily or even alternate daily walks, I could hold off some of the newer issues I've been having in terms of symptoms. This has been true over the past few months. However, recently, even that isn't working. I don't want to whine about symptoms but sometimes it's hard to hold myself erect. I feel better when I give up and lie down propped up with a book. On the plus side I'm reading more offline with a full length book as opposed to the short pieces I read online.
What I probably hate the most is I'm finding myself looking ahead to the full body scan in March as the end all. I feel like if I can just get past that scan and have nothing new show up then everything will be ok. I know that's not true and it's irrational. Having a scan show that I'm not having a recurrence doesn't mean I'll feel better physically. I need to find a way to get past the idea of a scan being the magic pill. I am aware that I have kept pushing back signals that something may be wrong. I have had in the back of my mind, not too much longer until my scan and that will ease my mind. The problem is what if it doesn't.
I've had scans in the past which actually worried me more and I even had one where I was given the option of exploratory surgery or re-scanning in three months. I chose the re-scan and the mass got smaller and eventually went away so the assumption is that it wasn't cancer. Then there is the issue of, what happens when I'm far enough out from having active cancer that the scans are no longer part of my follow up protocol. At some point I may have to accept that I'm going to lose ground physically without the doctors being able to help beyond the management of symptoms. That may not be a matter of giving up so much as a matter of being realistic. I may have to accept that the whole thing is totally beyond my control. Which brings me to the reason for this slightly depressing post. I have felt like I wanted to write some kind of New Year post with hopes, dreams, goals, or something beyond the same old, same old. I find this year that I can't do that in any way shape or form. Who knows maybe by April Fool's day I can. This post explains how April Fool's day used to be New Year's day.