All of the ups and downs lately have been very tiring to both me and Joe. It is as if our entire life was balanced on a precipice. We both knew he planned to keep on fighting, but we really had no concept of what that was going to mean. After today, we feel a little better.
He is still facing the rest of his life dealing with stage 4 cancer. Unless there is some freak accident, it will most probably be what kills him down the line. The honest truth is that we have no concrete timeline. I have been watching his gears turn as he tries to reconcile everything. His two most common phrases “This is not fair” and “I’ll be fine” have been in great abundance lately. He keeps trying to make sure I will be okay after he is gone. My darling. I think he firmly believes he will outlive any possible timeline.
So, PET scan yesterday. Which meant scanxiety for me until this afternoon. He also met with a new GI doctor.
Reassurance for him. He can be on TPN as long as he has no problem with the PICC line. He is currently being “underfed” since he is still trying to have oral intake. This is probably going to have him losing weight in a controlled fashion, and he does have a few extra pounds he can lose. He will get weekly blood draws from his PICC to help adjust what they are giving to him.
I set him up nightly and disconnect him every morning from the TPN. This is working out well for this week, and hoping it continues. I have to keep an eye on the PICC dressing. His skin gets very sensitive, and he will start scratching at it without thinking about it.
The PET scan did not show any metastasis other than what they already thought he had. If there is anything else, anywhere else, it is too small to show up right now. AWESOME! He has also been having an easier time with not being constipated. The oncologist was originally thinking it could be chemotherapy or steroids helping him along.
Turns out, it must be the FOLFOX regime. The steroids that the oncologist wanted him on slipped through the cracks, so he hasn’t been on any! We will rescan after about 4 more infusions, so roughly 2 months. Keeping positive thoughts is key. If he feels worse at any time, they’ll scan sooner, but hoping he continues to feel better.
He needs another dilation. Going to work on setting that up. In the meantime we are finding a new normal. I am working to keep his spirits up. I will continue to update here, and GoFundMe, and anywhere else I can link to. Here’s to years left!! He’s too stubborn and ornery to give in any time soon.