Sunday, January 12, 2014

The Rehab Center

Mark came out of surgery well. He spent a week in the hospital and then they transferred him to Orem Rehab. He managed to arrive at a rather bad time, spent the weekend not in the system, missed therapy over the weekend, and we had to request several of his meals. Once Monday came around and he was in the computer, life got better.

He's been doing physical therapy almost daily and he finally got his first occupational therapy on Friday. Speech has been super consistent about coming in (turns out she's a third cousin on my dad's side and grew up next to the Sundels up the meadow - random!), and he's been super consistent about being hard to wake up when she's there.  Although, he's been hard to wake up most of the time...

I wish I could say he's been doing better. We keep seeing small improvements, but if I try to be objective, he's not really making any great strides. He's actually gone backward quite a bit, even since coming here. He got a UTI, had some dehydration issues, and has been in bed so long that he has lost a lot of strength. He's hard to wake up for therapy. He says he wants to do it (by a really slight nod), and then has a super hard time waking up to do anything.  Even eating is hard for him to wake up to do.  He's the most awake while eating, but even that is borderline 'wakefulness.'

We had an appointment with his oncologist last Monday and he said that treatment while the patient isn't doing well physically is actually detrimental, so he doesn't recommend treatment until (if) Mark starts doing much better.

An MRI is only mostly useful. It will definitely show if things are worse, but if things are better or neutral it's hard to guess what makes it look better. MRIs show swelling and the avastin is great at brain swelling, so a good MRI could just be less swelling, or it could be the tumor doing well - it's likely to be a guessing game. But since we won't treat Mark unless he's doing better, they won't bother giving him an MRI until there's a reason to see how treatment is going.

So that's where we are. Mark got some IV fluids last night, but once the bag ran out they unhooked it.  They're keeping a closer eye on his output to see if needs more. He is still on a two person transfer from bed to his wheelchair, and his left arm/side is basically useless (flaccid?). His food comes puréed, but at least that way he gets more down him. If he's in his wheelchair, we have to hold his head up for him while we feed him, and then put it back down for him to drink so he doesn't cough on his water...  Just in case you were wondering, heads are heavy! :)

I have asked him a few times over the last couple of weeks if he wants to fight this, or if he's ready to be done and come home (to go Home...), and, while his answer is getting weaker, it has stayed the same.  He wants to keep fighting.  So, we're going to help him fight - in whatever way we can, and whatever that means - for as long as he still wants to fight.  

8 comments:

Laurie said...

Oh my goodness, Rachel, that last paragraph about killed me. (Typing through tears. Which, because you know I'm 1/4 Owens, shouldn't surprise you one bit.)

I love you. I love Mark. I'm so sorry.

Becca said...

That last paragraph did me in. Mark has always been tough. He's a fighter. Love him for that. Love you guys.

Jeanette said...

Hugs and prayers.

Jeanette said...

Hugs and prayers.

Karlea said...

You are the bravest, Rachel. Hugs to you and Sweet Mark.

Jenny Gardner said...

Love you all, you're constantly on our minds.

xoxoxo

Unknown said...

You're both always in my heart and always in my prayers. Love you both. We all support you.

Jean said...

You're as strong as he is! Hang in there!!!