Thursday, January 28, 2010
BUT.... I was able to get to 6 things as opposed to only finding 3.
1. WASH IS DRIVING AGAIN!!!!! Dr's gave him the all clear and he felt comfortable yesterday doing it, and I think he's taking the car again today.
2. I slept a full 8 hours. Blessings.
3. We got our notification from SSI at last saying they now believe that Wash is disabled and dying so we should start to get regular funds in March! Huzzah!
4. Volunteering pays off. I put a call into my city councilman's office who I helped to campaign for and now the city is putting us on programs to get our utilities paid and half our rent each month too. Blessings.
5. I had a 10 minute long conversation with my mother yesterday that was PLEASANT. No fighting, she called, and just listened to me. Wonderful.
6. It's currently raining again. This isn't from yesterday but it still makes me happy.
7. Wash ate a whole half pizza by himself and slept through the whole night no nausea!!! That deserves a fracking happy dance.
I am going to go give a prayer of Thanks now. Because I can at least for now see the things to be happy to live for.
Wednesday, January 27, 2010
Yesterday was a very bad day.
There was nothing specific really to spark it per se, but I had the depression hit mid afternoon and it hit hard. I came home, Wash said something to me- most likely "hello" or something I don't even remember but it set me off to crying and bed.
I went and stayed there til almost ten pm. Not really sleeping, or always crying, just trying to not exist.
I have been feeling very confused and lost lately. I don't know who I am anymore.
I don't have a future- a career, a degree yet if ever, my old love now makes me sick (forensic anthropology) , we have no children and I lost the only one we could have had- aside from bringing home some money and driving him everywhere what am I here for?
I don't have an answer anymore. Wash wants me to talk to my therapist and psychologist about this.
When we married it became Our Life. When he got sick, We got cancer. But- the horrid thing is this will take him first- and I can't go. What's left for me here?
I passed out after 1:30. Woke every hour til 4-5ish, then finally got up so I wouldn't keep waking Wash up.
Aelphie slept with me yesterday / last night. She used to do that all the time as a kitten then over the last few years she seems to only do it when I really need comfort. The Egyptians and the very old religions would say that cats were guides sent from Anubis in the underworld to guide the souls safely down. I can get that.
There's something to me about her green eyes, soft fur, purr, and smell, that just hypnotizes me in a way to a calmer state. I remember more things when she is around, I remember me.
I prayed last night. Honestly prayed- one of the few times in my life so far.
Praying for strength today too.
I am so scared about the future. Pray for that too, Tash.
Monday, January 25, 2010
Saturday, January 23, 2010
Friday, January 22, 2010
i set up various candles in one room so we could at least play cards or something together and ended up giving myself a nasty 2nd degree burn on my thumb/palm.
the kind with nasty big blisters? yea, that bad.
this is going to make things interesting today for sure.
yesterday was the first day my medication seemed to be adjusted to me and worked "all day" with no crashes in energy or emotion.
i do it for him.
AND WE HAVE FOUR WHOLE WEEKS WITH NO CHEMO OR RADIATION!!! WH00T!!
Try and make the best of them.
Wednesday, January 20, 2010
Can't do it all in one go.
Right now, I am most angry that the family and friends we need MOST right now - they are all fighting with me, or him and me or infighting right now.
Why? Because they all know the best care for Wash.
.... except for something.
No one has asked my husband what he wants. How he wants the rest of his life to go. Where he wants to live. With whom. Doing or not doing as he pleases.
Wait, they did ask once. And then promptly ignored his answer and tried to impose their own will over him.
Funny.... the way I see it Wash's opinion is the only one that matters. He is the terminal cancer patient- not the other way around.
When I married my husband I swore to love, honour, and respect him. Even if I don't like how he wants to spend his last days, it is his fucking decision not up to anyone else.
And his medical care? How many times he goes through treatment?
Well that's up to him too.
Wash is still a person- a living human being who deserves to have his voice listened to and his wishes respected.
Goddamn. I wish some people in their 30s/50s/60s would do well to grow the fuck up.
This is beyond wrong.
Tuesday, January 19, 2010
Social Security and Disability won't start til March if then.
I have no idea what to do.
Someone help me. Please. I am 23 taking care of my disabled 25 year old husband with terminal cancer.
What am I supposed to do here?
Saturday, January 16, 2010
Friday, January 15, 2010
Just him and me, spending time together, enjoying being around him and having fun. Last night, just for a night we beat the Cancer. It didn't come into play, it was forgotton- banished from our time together.
I think we are gonna have to start doing this once a week or so.
I've also been having worse night terrors lately, but oddly sleeping more hours- say 7 instead of my normal 4 per night.
I wake up next to him and everything is ok. He was wheezing in his sleep last night- I wonder if that's a chemo side effect?
He hasn't been feeling as nauseated lately though which is wonderful. However, since he's been off the steroids for a few days now his appetite is slowing down. He is still eating a bunch of small meals / snacks in the day but instead of cleaning his plate as it were, there's always some left over now. I'm a bit worried- need to watch his weight more.
Today is the 3rd day to go in Radiation. Then, he has almost a whole month to just rest and recover.
I'm working as much as I can and am trying hard to save up so I can take him up to Sedona for a weekend. Just us, the good air and red rocks no poison for his body. I want to make that happen.
His parents will be back in town in a few days for his "Discharge Dr Day" next Tues when we get his orders on what to do next after finishing treatment.
This round. See, with GBM it's a "when" it comes back, when a new tumour grows- not an if.
I am going to live with him as best I can, as happily as I can. I deserve that for myself as well- and he does too.
My father-in-law redid our backyard this week while he was here- it's fricking gorgeous now. I'm going to be planting more mint I bought this week in the garden- still no freeze, and I harvested carrotts, tomatoes, and a bell pepper yesterday. There are a bunch of spicy peppers that are red/ purple and should be ready to pick in the next few days as well. Wash is also planning on talking to his dad to build a higher level addition to the garden [maybe as my anniversary gift for this year? I see a theme going] so I can do corn again this summer, and squash and pumpkins and potatoes- things that need deeper soil.
Today WILL be a good day.
Thursday, January 14, 2010
Wednesday, January 13, 2010
This was made very clear to me last night.
His are the only feelings that matter at all. I am not allowed to have negative feelings- which are all I have these days.
So, no feelings or emotions for Tashi.
I can't be upset, that's being a bad wife. I can't be resentful of anything as that's being a bad wife. I can't do it all, or even do parts right according to his "night of hard truths" but I'm not allowed to feel like I have failed, even when people tell me I have.
I slept alone last night.
He says he did not sleep much either. But, his lack of sleep is directly my fault as he can't sleep without me now he says. So, I have to stay unhappy and uncomfortable all night with a smile on face now too.
At least UC get paid for this kind of immersion work. I just get to watch my losses mount up.
He still doesn't understand that though "we" are infertile now as a couple, it's only me who is feeling it.
I am being asked at 23 to give up ever having any kind of modern, free, or happy life- and I MUST be great-full for it too!
I really have no idea how to get through the next hour or to-day.
Monday, January 11, 2010
I cried in my car for 10 minutes before I drove home.
I stopped a block away, parked, and cried steadily for a half hour before I could go home.
I stopped feeling like a person.
I feel like a "something".
Not allowed feelings, or deep thoughts. Questioning thoughts.
It's literally always about him now, but if I resent that in any way I am horrid myself. He's dying, so I am not allowed to feel this. Only Wash. Tash just watches and cries.
Said today one of the reasons he called his dad to come down and help is that I can't take care of him well enough to make sure he has the basics- like water. Tap doesn't taste as great if I can't get the 5 gal refilled every two days like I used to, I agree. However, I see this as still having water- a basic. He did not.
So if anything happens to him, again, it's my fault.
I either cry uncontrollably or detach hard from myself- which gets harder and harder to put back together.
He's off chemo a week early. I really wish, I wish so much that I could feel happy about this- but when I open up the only thing I feel is pain- so it's pain or numb catatonia.
All through my life death in every way permeated. Still it comes, not at me but again at the one I love. How do I make a future in the wake of this? How do I find hope?
Right now I need my best friend so much. And he can't help me because he's dying and asleep- drugged up nicely to help with the pain of poisoning himself for weeks on weeks.
I need him, and I am so afraid the part I need is really gone forever. That the tumour or the surgeries got to it.
I just have to endure my pain and all he asks of me until I don't wake. That luxury won't come until I watch the man I love with equality to my own soul, dies. And I can hope for a quick one when it happens, but this disease robs most of even that.
The good in my life dies with him.
Saturday, January 2, 2010
That being said, been spending the last couple days home with him. I've felt so spoiled to take a full day off, do nothing but enjoy my time with him. It's worth it.
We've been watching a LOT of BSG.
Can't get better than that.
Cept for today me getting up early to go out and get some good supplies to make him a kick ass breakfast.