an update...

I thought I'd take a minute to give you all an update on my situation.  I decided to go ahead with the clinical trial. It was far more difficult decision than I thought it would be. I hope that your family members or friends never have to make a choice whether or not to a clinical trial, but if they do, please be patient with them, listen to them, ask them questions. If they ask, you can suggest, but you have no idea what you would do in that situation until you are in it. I thought I did, but it is far more complicated when it is your body. 

But, I digress. I decided to do the clinical trial because it seemed to be a good way to stop the growth of the nodules (mini-tumors in my case) that are in my lungs with many less side effects than there would be with surgery or chemo (even assuming we could find a chemo that would work). And it seems to me to be a better option than the one preferred by some doctors of "yeah, it's probably cancer growing in your lungs, but it's slow growing, so we're just going to let it grow for a while" (ok, I paraphrased, but you get the gist of it) 

The actual treatment will be stereo-tactic radio-surgery (cyber-knife, gamma-knife, novalis are all brand names), and consist of 4-12 treatments of 45 min to one hour each, every other day. For treatments, I have to lay very still, saran-wrapped into this molded form for my body, with my arms up over my head. I feel a bit like a burrito. (I had a preliminary scan yesterday with the same set-up). I'll start treatment either next week, or the week after. Just like regular radiation treatments, they have to spend fair amount of time planning exactly where the radiation will go.  I'll let you all know when the treatments will be.

And, since the question of the day seems to be "yes, but how are doing emotionally?" I seem to be handling this all ok. In a lot of ways, it is easier to deal with it now that we are pretty sure it is cancer than it was waiting for the next scan. (of course, I'd still rather be just waiting for the next scan...)

Decision Time!

Well, It has been two weeks since my last doctor's appointment, and they FINALLY sent me the paperwork for that clinical trial.  I still haven't gotten the hard copies, but they emailed me the pdfs of the files. I've read all 40 pages (40!!) of what will happen if I decide to do this trial, and what could happen if it goes bad, and what could happen if it goes well. It sounds to me like the science is there to say that this probably works in other cancers, and the treatment has relatively minor effects, so I am leaning toward doing the trial. I've emailed several more questions to the doctor's office, so hopefully I can get answers, and get started on the path I choose instead of just wavering at the corner.


Making this decision is much harder than I thought it would be. I think I am over-analyzing it.  It is very hard to make a choice with such lasting consequences, when I can't predict with any certainty what the outcome will be with either choice.