Living My Life With Stage 4 Pancreatic Cancer

Why write a blog?

Hello to anyone who is reading this!

This is the beginning of my blog about living my life with Stage 4 Pancreatic Cancer—End stage.

I didn’t know you could live more than a couple weeks or months in end-stage.  Most people don’t, I guess.

I joked about writing this imaginary blog when I spent a year on a treatment that allowed me only 10 days to feel well enough to live a fairly normal life. (Actually normal doesn’t even really exist for me anymore!)  To earn those good days, I spent the previous 10 days living in post-chemo treatment physical hell – that also became normal in a perverse way.

Now I’m living in limbo.  Waiting. The treatments have stopped working. There are only two treatment protocols for people with pancreatic cancer. The first one worked, but it was going to kill me as I developed a toxic drug reaction. The second worked for a year before it stopped. That’s a long time in the chemo world.

Now, I wait. I wait for the tumors to grow large enough for me to qualify for a clinical trial. I have very “well-behaved” tumors apparently, so they are growing slow. I guess it’s not strange that a retired social worker and teacher would have a “well-behaved” anything. We do know something about training behavior.

I wait for symptoms to appear that will cause me distress (and possibly kill me) so they can treat the symptoms.

Waiting and not receiving treatment is wonderful.

It’s also very, very weird. 

Writing a blog seemed like it would take more energy than I had, so it was only an imaginary blog for a couple years. It’s a lot of fun writing an imaginary blog – no actual work, just ideas.

So, why am I writing it now?  Because I’m waiting and that takes a lot of energy too, but with a different kind of energy-suck. 

I’m also writing to honor those who are diagnosed with Stage Four Pancreatic Cancer. You might live longer than you expect and I want you to have someone who tells you what that’s like. There aren’t many role models for people with this because, well, they’re usually gone. So, this is for you. Maybe your journey will be similar to mine.  Actually, it will probably be very different because “everyone is different.” Even still, maybe this will still be a bit of a guide.

Published by

kbraier

This is my blog about living my life with Stage 4 Pancreatic Cancer—End stage. I joked about writing this imaginary blog when I spent a year on a treatment that allowed me only 10 days to feel well enough to live a fairly normal life. (Actually normal doesn’t even really exist for me anymore!) To earn those good days, I spent the previous 10 days living in post-chemo treatment physical hell – that also became normal in a perverse way. I’m also writing to honor those who are diagnosed with Stage Four Pancreatic Cancer. You might live longer than you expect and I want you to have someone who tells you what that’s like. There aren’t many role models for people with this because, well, they’re usually gone. So, this is for you. Maybe your journey will be similar to mine. Actually, it will probably be very different because “everyone is different.” Even still, maybe this will still be a bit of a guide.

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