I’m scared.

Everything feels like it’s happening too fast.

J was released from the hospital yesterday and I think it was probably too soon. He tried taking a shower last night and afterwards he seemed so woozy and out of sorts that I thought I would have to take him back to the hospital.

His blood pressure was also pretty high (which he knew because I bought him a blood pressure monitor at the store yesterday.)

He does have malignant pleural effusion. From everything I’ve read, the chances of that coming back in the next 30 days are over 90 percent. I don’t know if he’ll need to be hospitalized again for it or not but I would assume so.

He’s on oxygen at home. Though his nurse said in discharging him that he didn’t have to use it at night, he only lasted about an hour and a half before going out to get it.

Then, he needed to go out to the sofa a few hours later. Yes, that meant that I couldn’t bake the Christmas cookies I wanted to before Amy comes over tomorrow. But more importantly, it worries me a lot that he just can’t seem to get comfortable anywhere.

Supposedly, the oxygen is only temporary until he recovers from the pneumonia and he’ll start feeling a bit better then. But I have to admit that I’m finding that really hard to imagine right now (especially given the high rate of recurrence of the MPE.)

I also looked up the survival rate of MPE as secondary to colon cancer and it really wasn’t good. I don’t know how to advise Dylan about going back to school but I think the chances of J dying while he’s at school are unfortunately pretty high.

Another thing that now seems kinda silly is that I told him a long time ago, around the time he was first diagnosed, that I wanted him to write letters or make videos for me and each of the kids before he died.

He always said that he would do that when he knew that he was at the end but didn’t want to do it prematurely. I was always afraid of something like this, where the end didn’t come in an orderly fashion. I can’t imagine that he’ll get to it now.

And I don’t know why that was so important to me. I guess I just wanted some written reminders of how much he loved us. Maybe some videos that I could watch when I was feeling lonely and sad.

But really, he already spent his life showing us that, and I have a whole box full of cards that say how much he loves me.

I do worry more about the kids. He’s always been the type who showed them his love in actions more than words. I think that will be enough. I think it may have to be.

I’m also extremely worried about my finances, especially if he goes on disability soon (which he might.) I still have over two years until I’m eligible for social security survivor benefits and it might take a long time to get the life insurance payout.

But I would be a jerk if I focused on that now. For now I just have to try to take care of him as best as I can.

I guess I am going to get up super early and go to his appointment with his oncologist on Monday morning. Part of me thinks it won’t do any good and I’ll just be wasting my breath.

His oncologist wants to keep doing chemo but honestly I think it’s probably past the time for him to be on hospice. I know he wants to avoid that because he wants to get better; I’m just not sure how realistic that is.

He’s suffering so much and it’s so gut-wrenching to see. It’s not that I want him to die sooner and maybe he can indeed get better from the pneumonia. I just fear that he’ll keep pushing himself way past the point where he could get real relief from hospice and I’m just going to keep watching him suffer.

I want to remember the good times we had together but I feel like they’re getting buried under the trauma his current circumstances are causing. It really does not seem like a good death at all.

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