At the doctor's office the other day, the P.A. said, "Geez, how much more are you guys gonna have to go through?! I can't believe how much you've had to deal with!" Well, already two days later I can name something else!
I guess I need to back up. This past week actually has been pretty hectic. The PICC line was removed last Friday, and we were hoping the nurse would remove his staples. But she said she couldn't because of insurance conflicts. I didn't understand what could possibly conflict with her quickly removing them while she was already here. When she came to remove the IV line, she had a supervisor with her. The supervisor asked why she didn't remove the staples, and she said she couldn't make an extra visit to remove staples, and the supervisor told her, "YOU'RE NOT MAKING AN EXTRA VISIT. YOU'RE ALREADY HERE!" But at that point it was too late, they didn't bring a kit to remove staples. So I decided it was worth it to pay an Instacare co-pay so we wouldn't have to go clear to Salt Lake. But they wouldn't touch him. Nobody would. His Internal Medicine doctor's office said they wouldn't either. It was a joke. Nobody wants the liability. It was Friday evening, so I thought we'd have to wait until Monday. Luckily our neighbor did it, so we didn't have to worry about it.
To add to that stress, I got a phone call the same day from a lady telling me that Jared was kicked off his clinical trial, and she was trying to clear up some insurance stuff to continue with the Avastin. That news was a pretty big kick in the gut.
On Sunday I left to Bear Lake with the kids to Jared's family's Family Reunion. I could tell Jared was sad he couldn't go, but he felt he needed to work. When I left he had decided to go to work Monday, then come up Tuesday with his brother so he didn't have to miss the whole thing. When I called him Monday, he hadn't gone to work that day because he felt too horrible. He did come to Bear Lake Tuesday, but the day at the beach completely wore him out, so when we headed home Wednesday he told me he couldn't have handled the whole time up there. We did get him to go for a ride in the boat and jet ski, though. We rushed back Wednesday to get to his MRI appointment. Wednesday afternoon I was WIPED OUT! I had been staying up way too late and getting up way too early at the reunion! But it was worth it. I have a hard time going to bed when I know others are up having a good time!
Thursday was the appointment with the oncologist. We found out that there was minimal change in his MRI, but we're both wondering why he's been feeling so horribly lately if there's nothing to explain it. The past couple weeks he pretty much gets out of bed to eat, but other than that he's completely wiped out. We also found out Thursday that he wasn't supposed to have his staples out yet. So I was right, the doctor wanted to leave them in longer, but his dumb discharge papers from the hospital said 10 days! Oh well, it's too late to worry about that, but I am concerned right now with how the incision looks.
We've also decided the past couple days that we've got to have him go on Long-Term Disability. I had already decided that we didn't have any other option a couple weeks ago, but it took me a while to talk him into it. He feels like he's throwing in the towel. But the fact is, he can't work. He keeps trying and he's killing himself. It's hard to watch. So that reality was a huge pill to swallow on top of everything else. Right now I'm trying to make sure that I cover everything so we don't lose any benefits. That would be HORRIBLE, to say the least. But we've both said a thousand times that we can't imagine what our situation would be if he was working in any other job. It has been a HUGE blessing!
So now we're caught up to today. This morning Jared started saying that his chest was really hurting, and he felt like he was having a heart attack. I was pretty confident that it could only be one thing - MORE PULMONARY EMBOLISMS! (Which, by the way, can kill him at any second.) He really struggled to get his clothes on because he was in so much pain. Jared's brother, Brian, was already heading over to the house, so he agreed to take him to the E.R. Sure enough, he was admitted with multiple blood clots in his lungs.
I don't know if we just have the worst luck ever, or if we're just such horrible people that we need a lot of "refining." Either way, the next few days will be spent in the hospital once again. I'm at the point where I just try to laugh at how ridiculous all of this is, and I try to focus on one day at a time so I don't go crazy.
