Monday, October 24, 2011

Only

"You might be onto something there." "It's a possibility"

Wash has begun to speak almost entirely in riddles now. Everything comes with a modifier, there's a possibility or probability to everything. Instead of someone else just "being right".

Le sigh.


He's going to get checked out by the doc today; he's not been right the last few days.

Friday was a pretty good day, he woke up well enough, and even ate a little bit. Lately he's been forgetting to eat even at my prompting. We spent the afternoon over at the Salvation Army doing some volunteer work. It was a really rewarding way to spend a few hours, and Wash really did do his personal best to chip in and help as well. For me, the best way I can think of to describe it is as a big emotional orgasm. The feelings of self disrespect are taken away for a little while and you feel a greater sense of community and positive outreach.
We lit our Friday night Shabbos lights but did not get out that day- going out and talking to others like Wash did just drained him of energy. He seems to be faster to that emotional irrational edge.
Saturday he was boffed. We tried to go out to the Slutwalk, but his walk ended up going way short. First he wanted to go walk almost 4 miles! Then he was ok with trying for 2. Then by the time we had gone 1/2 of the first mile he could only go on 2 more blocks before we had to turn around back home. This did not bode well for his personal attitude.

We did spend a large amount of time Saturday together, though Wash was working on the literal very end of his short story- he has about 20 single spaced pages of his original short story (though, the idea may not be so much. He keeps forgetting about all his influences so it sounds like something I have read before, but not where I can place it). So far he has only read little bits to me. I prefer really to wait until something is completed before I try to enjoy it- as far as books and new materials go. But, this is his first story he has completed since he got his brain cancer, and it's one of the few things altogether he has completed, since his base personality likes to procrastinate as well.

We had to go out Sunday for a few errands. At the end of that trip I mention that this week, one week only it would be awesome for him to not go about talking about his cancer, the hospital, or begging for attention by playing his cancer card. Just this week. And only to me, when he is not sick.
Wash has grown a habit as his emotional response to make everything into a joke. Which, as a coping skill is not bad, but when it is the only one Wash has- it traumatizes me. Not everything relating to himself or his cancer is fucking funny. And some things really really fucking hurt. But it's funny and either Wash feels his own pain and processes it, or he jokes it off and it comes back to me. He so far the last two years has picked laughter and my own pain over his. Last night, especially after speaking to him, it was too much.
I really wonder, maybe start to believe now, I might have PTSD from this. From seeing the love of my life almost die in my arms coming home from my birthday. From discovering he had a brain tumor crushing his brain on my birthday, from what should be a celebratory day for me, into the worst memory of my life.
I want to learn to dissociate those events. I want us to celebrate Wash living, after this week. I want to claim back a happy day for myself, even if it is just one gorram day a year. Then we will go back to completely focusing on him, celebrating his every move and event.
So, back to last night.
Basically he was trying to recall a film name last night. He takes a while and doesn't speak out loud for me to help. He gets the name and I make a comment, not being funny or making a joke at his expense. He can't hear me though over the shower and proceeds to make an "Arnie" joke. I tell him "No, I am not joking, that is not funny, don't say it again."
So, he makes the same fucking reference.
And I flip.

For two years he has been making his tumor into "Arnie". Someone else. Someone not Wash. Not his responsibility, and a way to distance himself from the guilt of what he did - what Wash, my husband did while there was an undiagnosed tumor in his frontal brain. See, when the tumor got big enough it started fucking with his personality, his emotions, his motivation. And for a long period in that summer he was set to "Abuse". He physically abused me, and more than once. And emotionally abused me constantly. That is where a lot of the first stress of our extended family began to come in. I stayed, because I was truly convinced it was not Wash himself doing what he was. My family wanted me to leave. His family wanted him back home in Cali. I stuck it out with him, taking him to doctors and psychologists for months (Depression, what else could a 25 year old healthy male have?) before he had his grand mal in front of me and all my own denial of the seriousness of it went away.
So for two years Wash has been escaping his own mind by saying that the actions were not "him" but "Arnie" his tumor personality. I for a while, thought that was fine, if he could personify the cancer he could move on and process his feeling and emotions. NOPE!

So last night he makes not one, but two "Arnie" jokes. After I ask him specifically not to.
And then he got very very very mad at ? (me? himself?) and argued with me for a few hours. He would apologize and then take it back.

I asked for some time alone. I calmed down. We tried to talk and he just kept shitting on my words, seeming to me almost of pure spite. Not my Wash, not my love. I had asked him not to mention his cancer this week, and to drop the 'Arnie' bit. He didn't. He kept saying it was my issue to deal with, this is the "real world"
"No, Wash, this is our home. I don't expect that from others, but after 2 years of responding negatively to that every time, and after explicitly saying don't do it 5 hours ago, and then telling you to stop after you say it, and you did it AGAIN."
"But that's your problem to deal with."
"I am dealing and I do every time I go outside. But this is my home, and you are my husband. You should know because I tell you."

But he HAD to be 'right'.

So, for the first time in as long as I can remember we went to bed without saying "I love you." Terrible dreams. I slept like shit.

This morning he wakes and apologized. Says it was all him and he just kept wanting to push the hurtful truth aside.

I am taking him to the doctor's today. I don't know what is going on, but I am scared. He had an MRI at the start of this month. I am far too aware how fast a tumor can grow in 4 weeks. 4 weeks of his anti-seizure meds being tweaked, and I think he's still having them. He complains again of 'cotton brain' and feeling like his limbs are not part of his body. Maybe it is not the right med anymore, maybe he has too much, too little? I just know something is off and the numbers right now just don't hold hope. 24 months in with GBM 4.

I am beyond terrified at the thought that it might just get worse from here on out. It is terrifying to not know, and the knowledge itself as any of my nurse, doctor, or brain tumor readers will agree is not the lightest thing to bear either.

I've also made the decision to talk with his doc about some kind of Hospice nurse I could get to be on-call here. His doctors are great, but they are all M-Sat kind, unless he goes to the hospital. Which, he really really really does NOT want. Having a nurse on-call who knows his medical case would be helpful for me, and as I'm the caregiver, this one is my call. So far he seems to agree with me on it, but we will see how he reacts when he has to meet the RN.

So, birthday week again. And again, I'm here wondering if my husband will live to see it, and outside of a hospital. Yes, that's one worst case, but this is the worst of brain cancers. The tumor WILL come back at some point and likely kill him, or lead to his death.

I dislike feeling guilty that I want the focus to be me for one day, my 25th birthday, in- well, a year.
I was hoping for one day of not feeling like a burden, for having value.

Birthday wish?
Never ever gonna happen- Ground Force shows up and gives me a new garden. I still don't have one after ours was destroyed in May/June.
Might happen- Fox releases the rights and I get Freakylinks on dvd/blu-ray/VHS
Could happen- I get birthday cards. After my grandparents died, they pretty much just all stopped. I like cards.

I'm guessing I won't know more about Wash today, he'll probably just get blood work done, maybe an EEG.

I'll keep going, but some days, it takes me a long while to remember why I do.

5 comments:

  1. Sending you a universe of light and happiness for your birthday. You truly, absolutely deserve it. :)

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  2. I bought you and wrote out a postcard... BUT it's super pretty of the falls, and I'm afraid that if I send it the mail will eat it (the mail here is known to consume small artifacts pretty regularly) SO I'm holding on to it until the lovely day 47 days from now when my plane lands in Phoenix. Until the, I hope you can have a good birthday, and I will continue to collect postcards for you :)

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  3. #1) Tashi, my first cousin "M." in TX, (and her #3 younger sisters, too!), are also all RNs; but, after being an Orthopedic Nurse for many years, my dear cousin M. is now a Hospice RN Case Manager ............ (i.e., seeing her Hospice Patients who are at home; in Skilled-Nursing Facilities; OR in Hospital-Hospice).

    Anyway, as time has gone on, I've told M. about your very caring, insightful blog; and I've also discussed Wash's Medical Case with her----(i.e., as you've described it IN your blog/YouTube videos)----and M. honestly feels that a good Hospice Nurse could be very, very *helpful* to you, at this point in time with Wash's care.


    #2) Hospice Nurses are used *T.O.* their patients REACTING, as you know............ within the 1-10 Range Of PHYSICAL Pain ............ with forgetful/irrational/argumentative/angry BEHAVIOR ............ with profound sorrow at the HURTFUL truth (of their Terminal Medical Conditions, and having to leave those whom they love behind) ............ and/or often with the terrifying FEAR of not knowing "What's Next For Me"; or even what the next few DAYS will bring, (not to mention the next few WEEKS or MONTHS).

    The genuine comfort of having a nurse on-call, i.e., to either come out, as needed, to your townhouse; OR to simply discuss problems over the phone would truly be............ *I.N.V.A.L.U.A.B.L.E.* to you right now, you know.


    #3) Your wise decision to ask (Wash's doctor) for help from a Hospice Nurse ............ *I.S.* indeed your rightful call, Tashi. Like my dear cousin M. does----(i.e., every day for her Home Hospice Patients and THEIR loving, but exhausted, caregivers)----a Hospice Nurse could really help you, too, since you're the caregiver.

    Hospice Nurses are also very used *T.O.* in-home caregivers having "Compassion Fatigue" AND complete "Burnout" ............ so it's important to express, (i.e., TO the Hospice Nurse), how YOU personally feel, Tashi ............ so that the Hospice Nurse can help you, too, in addition to Wash.


    (((*hugs*))) to you from me and Jack............

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  4. A hospice nurse sounds like a great idea, and if you get to the point of needing it, a hospice or respite center for Wash as well. He is becoming more erratic and irrational. I know you want to keep him home but he is starting to need round the clock care and one person alone can only do that for so long.

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