cjm22

Unfortunately we found out today that his mental decline is due to cancer spreading in his brain. There aren’t any more treatment options, so we’re focusing on symptom relief for his headaches and nausea. He’s still mostly unresponsive and very confused. The oncologist said she thinks he has weeks rather than months left to live. I’m so sad and I already miss him so much. I know you guys never met him (with the exception of GeoTony, but my husband wasn’t at his best that day), but before he got sick my husband really was the funniest, smartest, kindest guy. He was just the best. He could talk your ear off about anything and make you laugh, too. I’m really sorry none of you got to meet him because he was just fucking fantastic.

not sure why anonymous! it's me, cjm22!

Hey Tony, thanks for the kind words. He really is a big warm west coast dude! He’s still so strong, too! He gets agitated sometimes and like three nurses have to rush in to make sure he doesn’t start ripping out IV cords, etc. It’s horrible but also makes me weirdly laugh because he was always VERY mischievous before he got sick, too. It’s just like him to keep everybody on their toes.
We’re still at VGH right now but I think he’ll probably move to hospice soon, just not yet because of the long weekend. Not sure yet if he’s going to stay at the Palliative Care Unit at VGH or go to an actual hospice. I don’t really feel like seeing anybody and am just hiding out in his hospital room or alone at our apartment. Unfortunately we just don’t have space in our tiny apartment and I’m too small and weak to safely manage him at home considering how confused and unstable he is. He is a really big and strong guy!
He was a little more lucid yesterday night and this morning because of all the steroids so we’ve gotten to talk a tiny bit. Not a lot, but it was still really nice.
He’s not in any pain right now so that’s the most important thing. Most of the time he is peacefully asleep. If he has to go this is probably the most peaceful way to do it.

Thank you, Ann! The scans shows nothing unusual in his brain (beyond the couple stable mets). The neurologist thinks they were probably a type of seizure. She's increased his anti-seizure meds. The upside is that those additional meds have also seemed to bring his neuropathy under more control, too. No episodes in about two weeks now so hopefully nothing else will happen …

Ahh Tony I didn't see your reply until today! And you probably won't see this one! I wish this forum had a notification system. (Does it??)

Sounds like this trial didn't work out but you're onto another one considering your latest post. I'm so glad you've found something else that's promising. This disease is so crazy! Maybe you're feeling nervous to start a new thing but I have a good feeling for you.

I'm a software developer (officially just finished my last exam a week ago and I start work in a month). Hubby has always loved computers so he's going to try learning to code while he regains strength. He used to be in academia but it's not possible for us to move around for his career any more, and becoming a professor normally means you've got to move to where the jobs are … So that's out.

I hope we run into you again someday!!!

It's crazy that I've known you as an internet celebrity for more than a year now!! Thanks Celeste!!

Oh Tony!! <3 Thank you for the kind words! I hope you figure out next steps soon! Maybe you can think of this "time away from cancer things" as a vacation?! You'll have to dive back in when the next steps get figured out so enjoy the break while you can!! I feel like we have appointments practically every day (in fact we HAVE had appointments practically every day for three weeks now). 

We're definitely making the most of prednisone right now. We go walking all over the place every day! Bubble tea every afternoon (it's 10 blocks from our apartment)! Hurts the wallet but good for the soul…