Paul's Treatment: 2016 - Now

One more post should just about bring Paul's treatment up-to-date. Frankly, I'm itching to get on with things. So I'll be editing ruthlessly here.

The thing about Meso is—it's incurable. We all hate that word. It signifies defeat. It suggests someone is going to die by the end of the story. It's something that, if I'm going to be perfectly honest here, took me some time to wrap my head around.

 I definitely didn't process this fact when Paul was first diagnosed. We'll be kind and call it innocence instead of ignorance, but at 25, I still thought everything was fixable. We have science, after all! Haven't we made enough advances in medicine to make my otherwise healthy husband tumor-free?

But. We haven't.

By the fall of 2015, his tumors had diminished slightly in size, but they were still there. They will likely always be there. So, unless we wanted to drive ourselves mad with worry, we had to adopt a new approach to Paul's cancer. 

Instead of looking at his disease as something we can cure, we see it as a type of chronic illness that needs to be treated, periodically. His treatments won't have a definitive end in sight like mine do. We do maintenance when required, and we manage symptoms as they surface. It's a beastly thing to sort out, but we've navigated things ok so far.

2016 was a top-notch year for our family. First-class all around. Paul was feeling good, his disease was stable, and he was enjoying a break from treatments. He got himself a new job, I quit my old job, and we bought our first home. We had a terrific summer.

 

What? We like ice cream. 

I know this metaphor is overused, and I know how lame and cliched it sounds. But having Meso is very much like being on a never-ending roller coaster ride. Except that roller coasters are fun and awesome and Meso is...not. 

Anyway, we were up in the clouds for a while there, but by the fall of 2016 things started going downhill. Fast. Symptoms reappeared: weight loss, fatigue, night sweats. By October, we decided it was time to gear up for another treatment.

In November, Paul enrolled in a second clinical trial at the National Institute of Health. We were hopeful, especially since he had responded so well to his last trial drug. But guys. This new chemo kicked his skinny butt. Actually, it very nearly killed him, so he wasn't even able to complete 2 full cycles. 

In February 2017, he tried an immunotherapy called Keytruda here in Buffalo. Again, he had to stop after 2 rounds due to complications with his kidneys and liver (you know, nothing important.)

Which brings us up to speed! (phew—you still with me?)

Paul hasn't received any treatment since his last Keytruda infusion in April. (Unless you count his prescription drugs...which wouldn't be too far off the mark because, baby, that list runs for miles.)

He isn't able to work, and he does have a slew of symptoms that we're dealing with. But I think (and I'd suspect he'd agree), right now Paul is able to enjoy a mostly comfortable life with the people he loves. He can't go on long walks anymore without getting winded, his intestinal tract will never be the same (goodbye fried wonders of the world) and his brain function, well. That's up for discussion. (love you, Paul!)

There are things he can't do, and it's frustrating. Of course it is! But, given the circumstances, we're lucky there are still plenty of things he can do. Over the last 5 years, we've revised (with several rewrites) our version of what constitutes a normal, happy family. And anyway, forget "normal." It's a pointless adjective when it comes to family life. Just happy. That's what we aim for.