Last night I had a nightmare. I was in a dirty hospital and a nurse kept injecting something into an IV in my arm that was making me weak and groggy. I was completely aware and terrified of what was happening, and I kept trying to escape, but the nurse kept finding out and catching me because I was so slow and weak. Then she would inject more debilitating serum. It was taking over my whole body. It was awful! I think that must be how Jared feels. Luckily I woke up and the nightmare was over. For him, it's reality. I can't even imagine.
I can't believe 3 weeks have passed already. The days have been REALLY long, but somehow we're surviving.
I should probably start where I ended off last time. It became clear pretty fast that Jared wasn't being defiant when he wasn't asking for help, he was either forgetting to ask, or he just flat out couldn't figure out how to ask. I even had him practice yelling my name. He can do it in that moment, but two minutes later he doesn't remember. So you can't really be mad at someone for what they can't do. But it doesn't mean it's not stressful!
His first night home he tried to get up in the middle of the night to go to the bathroom. I quickly jumped up to help him. At night he takes a sleeping pill, and he can't walk AT ALL. Without help, he would definitely be flat within a couple steps. In fact, even with my help he is really wobbly. We've had a couple of near-falls. His first night home was when I had my first official panic attack where I felt like I just couldn't cope with anything. And it was a really scary feeling. I realized that I had to go on medication. I have been fighting it for months, knowing I probably should, but there was a part of me that felt like a failure having to go on anxiety meds. But at that moment I realized I didn't have a choice. I can't fall apart when four kids are involved. I went to see my doctor a few days later, and we've decided on a 6-month Zoloft plan, and hopefully I won't need it after that. They also gave me Xanax until the Zoloft kicks in completely. That first few days before getting on the medicine I felt myself getting panicked over a lot, stuff that wouldn't normally effect me.
Both my doctor and Jared's oncologist said that they can't believe I waited this long to get on something. I told Jared's doctor that looking back, and now that I understand how the body works, I should've done this back in January when I originally started getting headaches, dizziness, chest pains, etc. He said, "Would've, should've, could've - maybe you can use your example and experience to help others." So that's what I'm doing. I have been feeling a little better, but it makes me tired.
This past few weeks I feel like I'm taking care of a stranger, yet when I look in his eyes he's still in there somewhere. That's the hardest part for me - that it's him, but it's not him.
He has been able to get out and try to enjoy life as much as possible, but just doesn't seem to care much about anything. Or maybe it's just that he can't express himself. Jace had an incredible season in football, scoring 12 touchdowns in 7 games. Jared normally would've been a very proud dad, but the games he went to, he just watched quietly and didn't say a word, didn't cheer, nothing. I think he enjoys it, but it makes him sad. And the other night I officially knew he wasn't in his right mind when Neil came over and asked if he had been watching the Ducks game, and he hadn't. That is unheard of!!! (If you remember, he was demanding the game to be turned on just minutes after coming out of his first, 8-hour brain surgery!)
He says about 10 words a day, mostly yes and no, and most of the time he'll shake his head no while he says "yes" or vice-versa. So I have to figure out the true response. And even if I give him options, I keep repeating the options, and then ultimately I have to give each individual option and he'll respond yes or no. He also whispers a lot.
Somehow, miraculously, we've avoided falls up until last night. And after last night's fall, I've realized that if he's going down, he's going down. There's no way for me to stop it. Luckily he wasn't close to anything to smack his head. He was close to the bed, so after about 15 minutes of struggle I was able to get him back in bed, but I was about to give up and make him sleep the rest of the night on the floor. I'm definitely starting to worry about his safety, as well as my own.
A couple weeks ago we met with the oncologist. He showed us the "concerning" MRI, and explained that most of his speech issues and lack of cognitive ability is due to tumor (I had thought it was from swelling). He says that we will keep going with Avastin and do another MRI at the end of October. If it seems to be working and maintaining his quality of life, we keep going. If he starts to digress, we stop and basically give up.
This past few days I've noticed some slow digression. Today he was scheduled for another Avastin treatment, but he said he felt too loopy and weak and didn't want to go. So I re-scheduled for Monday. I definitely have an internal struggle right now. I feel a huge weight of responsibility. In his warped mental state right now, he is content. But the "real Jared" would be absolutely horrified and humiliated if he could see himself. He always joked that if it got bad, he wanted me to strap him into a wheelchair and push him off a cliff. But now it's bad, and he wants to live. So who do I honor? The "real Jared?" or the "warped-mental-state Jared?" I've been sick to my stomach the past couple days trying to figure it out.
Definitely some hard decisions to be made soon.
