So I've been at this about seven months now. In that time I have learned a lot about CML, participated in a lot of discussions and read various studies, articles, blogs, etc. I have my good days and bad, although overall if I had to gauge while I feel better in some ways, other ways I am feeling worse. Mostly just being tired, musculoskeletal pains, and lousy mood (winter and all this snow is not helping at all). Since my last test when I got pretty good results back, I have been feeling ok, I've been back in that mind set of "I'm going to live a long time with this". Ultimately though, something comes along, usually something that I read, that upsets me and changes my mood. This happened the other day. I have Google alerts set up daily for CML and Gleevec. Each day I get emails with searches on the web for those topics. Usually it is advertising for cheap Gleevec, but a lot of times it has to do with case studies, and I have learned some really good stuff. On occasion a link will come back to someone's blog. My curiosity always gets the best of me and I start reading, more often than not, the story is not good. This just happened the other day when I went to someone's blog and while they are doing ok (not great), they had a tribute post to a friend. Of course I clicked through the link and went to the friend's blog who had just past away the other day. It was a particularly difficult story, although I will be honest I couldn't get myself to read through the whole history. I think it hit home because it looked like he was around my age. The thing that makes it so hard is that when you look at these blogs and you see the worst has happened, you immediately think "well how did it get to this" so you go to the older posts and start at the beginning and all the stories start out pretty much the same. The person was diagnosed one way or another, usually out of the blue, maybe they weren't feeling well or something, we all know how it happens. And then you start to read and you see the hope and optimism in their writing as the learn about Gleevec and the other treatment options, and you see how things start to go well and they respond well and they are happy and letting their family know that things are going to be okay. Then over time you start to read about the bumps in the road, the set backs, the rising PCR, changes in dosage, changes in drugs, mutations or acceleration in the disease and you just start to think "that could be me". I'm in that early stage where I am trying to be optimistic and comforted by the odds, but just like those individuals my story reads like theirs where I am filled with hope and optimism, but the reality is that I feel like a caribou at the watering hole looking around in the brush for the predator that I know is stalking me.
The point of this thread isn't about how it's going to turn out, I know what the odds are and I know I have a good chance, and I know that there is nothing I can do about it, it will play out however it will play out, and there is no point thinking about things that may never happen. The issue is that I was feeling fine until I read about this person and then it put me in a funk. So the question becomes how do you balance the desire to be involved and hearing things you don't want to know about? Ignorance is bliss and if I just kept my head in the sand, I could pretend everything is fine. Although that can lead to uneasiness too as the mind wanders on its own. And I can't discount the other side of the coin when I read a post like Susan's from the other day and she is 13 years in and doing well. So, much like life, there is good and bad. I don't suppose there is an answer to this, I am just rambling on because I am particularly achy today, fighting off a cold, and ever since reading that story I have been bummed out. I know there is no right answer, I can stick my head in the sand, but that really isn't going to work, I can let the subject consume me and become all I think about every minute of every day, that doesn't sound like much fun, or I can try to find a balance and realize that some days it is going to tip in a good direction and other days it won't. I guess it is learning what to do with this information once I get it and how I let it affect me.
I hope I am not bringing anyone down with this, I just need to vent this out. I could really use some warm weather and a break from this winter. I just shoveled out from another snow storm yesterday, 14 inches! I have six foot snow mounds along side my driveway from all the snow I shoveled the last 2 weeks. I don't think that is helping either, I am quite sore. Nothing like getting up early in the morning, with the typical TKI pain and soreness, dragging yourself out of bed to go shovel tons of snow in the cold, just so you can run back inside, take a shower and go to work for a full day. Just to come home at night and play with kids and straighten up around the house. Alright, now I'm just complaining, so its time to stop. The playing with the kids part is actually a highlight, just wish I felt a little better so I could enjoy it more. Of course, I could not be able to get out of bed at all. I'm trying to keep perspective. Could it really be that shoveling snow for two hours in freezing temperatures is a privledge?
Anyway, this is kind of a schizophrenic post, so I'm going to stop now.
Hope everyone is feeling ok today.
