He's up for maybe an hour or so in the mornings, sleeps through the afternoon and is up from 6-7ish to 1am or so. It's frakked up his sleep cycle something good.
We have friends in town, and more coming in. It's really wonderful and I know Wash is happy to see them all. He can't really remember when the last time he saw/spoke to most people was, so it's always a happy event for us to have friends over.
It's taking him some adjustment though to get used to the idea that the status quo he's been going by for 13 months now might not apply anymore. The conversations we have are some tough hard words that I really never intended to be saying when I was this young. He talks of travel, of Hospice, of his lost friends, of wanting a legacy...
It's holiday time though so we have friends in, and it's getting colder (in theory- I live in AZ. Hit or miss) so there's more ... incentive for me to spend my days in the kitchen messing around with new recipes; right now I'm working on cranberry breads and a type of Red Velvet Brownie. It's also a great excuse to help Wash pack on some more pounds. He's finally averaging over 150 lbs, which is great- this time last year he was around 137 ish. I'd ideally like to get him back up closer to where he was in the 180s- but that included a lot of muscle mass he's lost in addition to the fat. His body has changed a lot as a result from the cancer and chemo.
I've been battling with AHCCCS and DES to prove to them that since Wash is still alive after 12 months he still does have brain cancer and he's lucky he's still alive - so far.
It feels like something acidic eating away at my insides every time I have to explain again and again that yes, he is still dying, and yes, he is impaired and will never work again. Last week the GBM community -among many others- lost a great heroine to me, K, who had lived over 5 years with GBM 4. I cannot even describe what I choose to take on just in the hopes Wash might live 5 more years.
It's hard for me. We don't really, can't really, talk about the person who should have been here with us this Christmas. I am not sure what pains him more, losing me or losing the chance we had to ever have a child. I don't even know how much he really thinks on it, or if like me, it just hurts too much on top of everything else to ponder on. It's like a wasp sting when I see children or my pregnant friends. I can't really help it. I'm still able to be happy for them, it's easier for me now to be happy for them, but it just underlines more to me what it is I have to face. What I already have lost. Is there a point to extended life if the next generation will not know, remember, or care for you?
We have the tree finished with the trimming. Coloured lights, twinkling... candles around, sweet smells in the air... I have to try and be happy. Think of all the good that we still have. The good we can still do for others.
Same as last year; a bittersweet Christmas.