Loving life is the way to go, LookingUp! I love life too.

All the very best to you. I hope there is a lot more love in your future.

Thanks, his MDS was discovered during routine lab work, he didn’t notice any related symptoms during those first five years, got by with infrequent transfusions! His doctor was happy 🙂

It’s funny, patients seem to think that they are bothering their docs when they outlive their prognosis but I expect the docs love it as much as we do. I hope your dad got to enjoy his eleven years. I hope you did too!

It’s actually Lifey Stuff that’s keeping me awake rather than Cancer Stuff. It’s all inter-related though but I’ll have to make a decision soon.

For different reasons (not a cancer diagnosis), I am familiar with that lying awake all night feeling, more convinced as the hours and weeks and sometimes months go on that something has to change and looking for the factor that will make the just-right decision on what *kind* of change seem obvious. Typically after a long spell of pondering in the wee hours and bouncing some thoughts off my partner, and spending some more weeks or months pondering and bouncing, I have awakened one morning with the conviction that today is the day and here’s what I need to do to inch toward what might be a still-unknown physical or psychological destination. “Lifey stuff” is what my grandma used to call this messy business of facing the certainty of unexpected and uncertain and unpleasant events while appreciating the satisfying and enriching events that remain and the sense that some will always remain no matter what.
I just read the prognosis discussion on SP that you mentioned above. My dad with MDS prepared for the five years his doctor described as the likely outer limit for his survival. Each year after that until his death midway through the eleventh year, he enjoyed razzing the doc about it. The doc said he appreciated dad’s giving him an outlier to mention to other patients.

As your probably guessed, Trevor, I stole the idea for this post from the discussion going on on Smart Patients at the moment. The question kind of stuck in my head.

I really appreciated the great variety of responses there and felt informed by all of them. But I am a restless soul and will probably have to find my own way.

I would love a bit of clarity. I just received my appointment for my next MRI. Maybe that will have something to say!

Thank you, Janet. Wise as always.

I was awake all night thinking about this. Something has to change — I am not one to drift along with no destination in mind. We don’t know where we are headed yet, but we have to head somewhere.

I agree with Trevor L about the universal nature of some variation on the theme of wondering how much time we have. Based on how my life and those of my parents have played out, I think that even with a guaranteed specific date of expiration from your tumor doc, you might be comfortable making some big changes with that in mind, but life could easily throw other things at you eventually that might undermine your carefully thought out plan. A different serious illness for you or someone else, a too-good-to-refuse job offer somewhere—those are just two of many possible blindsider scenarios.

How people respond to that is all over the map—some say what the hell, let’s go for it and deal with the future as it comes. Others say it’s not worth the bother of shaking things up given that nothing is guaranteed to play out as planned. A lot of us just keep thinking about it feeling ambivalent about the status quo *and* the prospect of exciting changes.

I hope your doc will have something helpful to contribute to the discussion going on in your head (and with your family, I imagine). 🙂