Monday, April 30, 2012

Where's Mousey?

You don't scare me.

I woke up yesterday at 9am. I worked, really worked, the whole day.
I watched my husband forget when he was, where he was, and parts of who he was.

I regularly stay awake for 20 hour shifts out of a 24 hour day.

I am watching my 27 year old husband die, and die from a disease that takes away who he is, what he loves, and his memories before it begins to take away his physical being. Which it has started.

So, you, Mr Debt Collector?
When you call at 8:23am, after I've been asleep for perhaps 3 hours?
No, I'm not compassionate this morning. I'm not kind. Cancer is not kind.

I'm going to honestly tell you, you will get nothing.
We have no money. We have no income.
Wash will never ever be able to work again in his life to pay off his medical debt.

We owe the State, the Hospital, and the Federal Government well over $1,000,000.00 already for his care. Really, we hit $750,000.00 before he was even discharged from the hospital. It might be close to 2 million dollars now from his years of care and treatment.

I'm 25. My credit is already trashed. I did not graduate before my husband became terminally ill.
I got to see that $1 million dollars of care cannot put a broken person back to "whole".

I saw a 8cm tumor take over my husband.

Mr Debt Collector? You don't scare me one little bit.

I can pay you in tears or perhaps blood.

But money? What's money to Cancer?

You are far, far, far less scary to look in the face than a diagnosis of Glioblastoma Multiforme.

Friday, April 27, 2012


Hard morning for us both.

Wash woke this morning a bit panicked. He was very confused with what day is it today, who is coming over, what day is it again?, No there's stuff to do!
He got very very angry at/with me when I tried to correct him/give him info on today.

I had to ask him to sit in his "Cool Down Chair" twice this am.

Heavier on the am Xanax too.

I hate the days he doesn't remember. He knows who he is, but the rest is scary details he only faintly remembers.
He knows someone from Hospice is coming over today, but it's not his normal CNA so even explaining that just confuses him more. Same with a new Hospice nurse this afternoon.

I need extra patience on days like these. He's mentally a scared 3-5 year old in the body of a sick 27 year old.
But I always have to be the adult.

It's scary, it's not fair, and it's not fun.

Thursday, April 26, 2012

Sheet pans

Wash had a mostly great day yesterday. He was in a good mood, amicable to help out, able to communicate fully, and not super depressed. Good times, for us!

But, after his evening nap again, he kinda just... much more sensitive. I reminded him to call his parents on Skype and that went mostly well. Wash is still trying to learn how to assert himself when his parents bring up something he doesn't want to/can't talk about. It's hard for him, but mentally is it necessary; he just cannot mentally take talking about certain things.

My knee hurts. We had a pressure change and weather system blow in last night. My poor cats, though! I know Aelphie was kicked by me once last night, then she stayed off the bed, and Leto got it at least three times, and just came right back and laid right down on top of my legs again. My knee spasmed so much in the night. I'm glad the DireCat seemed to know I wasn't doing it on purpose.

Wash's meds were adjusted again after his bad night on Monday, and we should know if the side effects are worse for him on a lower dose (because he's just sleeping) or if the rage from the higher steroids is "worth" it as a side effect for the extra few hours he has in the afternoon without fatigue. His Hospice Nurse is checking on him again Fri.
We have the Chaplain coming over today though. We both adore her. She is GREAT at listening, and even better at gently giving good advice. I enjoy her company.

Going to try and have a good day. Focus on the good things. Smell the wetness from rain in the desert.

Another thanks to everyone for sending us love. Positive thoughts never hurt.

Tuesday, April 24, 2012


Wash's TARDIS custom urn arrived.
It's everything he dreamed of.

The smallest way we can say thank you;

Monday, April 23, 2012


Tried to go out for a walk with Wash.
Ended up asking him again today to not be so nasty about people he doesn't know (he made a real nasty personal remark about Gordon Ramsay.) and he flipped the fuck out.
Tried to sit down on the railroad tracks outside our home. Said he might as well just get it over with and kill himself.

Hospice and Crisis Response are talking to him over the phone, and they might come by, even though it's 10pm.

Fuck you, brain cancer. I'm too tired to deal with this shit.

Sunday, April 22, 2012

New Shot

So, after last Saturday and my much needed escape, I'm pretty sure that's when I became sick. By Monday I was feeling something off in my throat and Tuesday I was full on plaguesick.
This week kinda went by in a drug-haze. I think I slept most of Wed and Thursday.

Something nice to come of this though, is the help and services offered by ALTCS. Since Wash was finally put on it in April, and had a case manager and home-health services provider assigned things have been a bit nicer. I spoke to the Hospice SW on Tues and said I was not that well and he suggested getting some help in for the week. I agreed. Wed I spoke to the ALTCS manager who within hours had someone there for Wed evening and a full 6 hour shift set up for this past Thurs and Friday.
It was a gods-send. We had the same lady on Thur and Fri and she played with Wash, helped him with his stuff, made lunch and cleaned up too! Basically all the things I do, while watching him and helping with pills too. I slept quite soundly knowing someone else was able to watch him.
I still am clearing out the last of my illness; I'm hoping I do not have an ear infection now from this cold. But, I can breathe for the most part, I'm no longer going through a box of tissues per day, and I'm able to get some of this crap out of my head. So, better.
I'm thinking though, very seriously about calling up the case manager tomorrow though and asking for some part-time help; twice a week for a few hours is still more respite time than I'm currently getting and I'm finding that having a little "alone" time is very good not just physically, but mentally for me too. I'm reading a little more, I can find a little more enjoyment in things.

I'll have some good things to post tomorrow, but just for a day Wash wants to enjoy something quite wonderful that was done on his behalf.

I am thankful for the friends and support we have.

Thursday, April 19, 2012

Day 3 still sick. 4 hours of sleep in 10. Breathing issues now on top. Oh my body hurts!

Wednesday, April 18, 2012

Free Brick!

Fever day 2.

my voice is mostly gone. not feeling my best.
i called in for help, and thurs and friday a home healthcare worker will be coming over 12-6pm to help watch Wash so I can sleep and rest up.

not strep, but Ii feel awful.

i have had lots of tea made with mint from my garden.

Tuesday, April 17, 2012

What a wake up! My tonsils are swollen and painful and my voice is gone. Frak me. Fever too but no signs of strep. What luck!

Friday, April 13, 2012

But which one sings?

It's been a busy few days for sure! Monday was one of the best days I've/We've had in weeks. Wash was VERY present. He was himself, he was nice and sweet and even though physically he was not up for much, I got a good cuddle in with him, some nice hand holding and really, just some good moments with my husband.
Then, most of him left again. He tried very hard this week to compensate, as his parents were in town for a couple days, but he was looking for brain and energy that did not exist. He needed some long naps, a lot more Xanax this week, and more patience than I had.
Caring for my 27 year old physically, but mentally .... not, husband is a lot like a grown human's body, the endurance of a newborn, emotions of a 4-6 year old, and the memory of a 20 some odd year old. It's a lot.
He gets mad at me when I have to explain something a few times, or phrase it differently so he understands. He is cogent enough to know he doesn't understand, but not enough to really grasp what he knows he has issues with.
I think it was hard for his parents to come and really SEE him this time. I'm glad they did, he is too, and happy he was able to be honest for the most part with them. I'm personally sad, I am not sure if he will have the relationship with his brother he wants, but on that; Wash's bro wants a (probably, I'm not Wash, so I can't say for certain) well deserved apology, but Wash is NEVER going to be able to do that. He doesn't remember they fought, let alone what over! Any apology is truly meaningless. But, I don't know if Wash realizes either that his brother has to work through things as well and "just because" he *is* dying, it does not mean that everyone he wants is going to be placing Wash as their top priority. As sad on either part as it might be.

But, Wash was able to say some things, his parents were as well, and my personal hope is that all parties have begun to move forward again towards acceptance.
All the rest is just drama that pisses me off, and I've had far too much of that this week.

Thank you to the several awesome folks who have sent us Girl Scout Cookies. Wash's steroids have been up for a few weeks now and he is MOST appreciative. I have a nice Thin Mint stockpile which should last me through the summer and winter. Since we're in AZ a wonderful treat I've loved for decades is freezing Thin Mints and having them out on the porch on hot summer nights when the sun goes down.
I've been hard working in my garden to make sure that option will be a nice one for Wash this year. My fruits and veg are doing great, with the exception of the melon which is not taking. Boo. However, lots of bean and peas, lots of carrots, tomatoes, my strawberries just starting to come in, so we have a few ripe once a week or so. I've got all my solar lights up, and at night the flowers look great and it usually smells like basil and wet rosemary now. My gardenia has also finally gotten over transplant shock from Dec and the first bloom opened this morning! I love the fresh smell, bringing the blooms inside.

Wash has lately begun to spend the mornings outside with me and while I water, weed, and garden he usually takes Leto out to play with grass and he has begun to "read" the daily newspaper. He asked me last week to start getting the paper; it's too hard for him to try and keep up online with the news now, too many distractions. So he kinda skims the paper daily, and if he seems something he wants to read or know more details about he asks me. I have noticed we do have some more things to talk about, but there is so much bad shit going on, Wash tends to get angry like me at certain news.
I try to check the news the night before so I know if I have to censor it. He's asked me to remove traces of a few things; some certain architecture things, anything to do with Taliesin/West, and Earthquake reports by his hometown in CA. Not a large list, but we've learned from hard lessons those things will trigger the shit out of him, and he gets very depressed or worse. It's a little more work for me, but it makes him happier.
Mornings have turned for us as well, he needs to go VERY slow, and usually needs some other help to tide him over for the hour or so he is awake before his pills kick in. I have to have extra patience during this time. He's not fully awake, aware, conscious. But, he tries to be. There's a lot more work for me every morning. I want to try though. I have to try.

His Hospice check-outs were pretty good this week. He is having some medication side effects now, he does have the standard "Chipmunk" steroid face. A few people had mentioned to me he was looking swollen, but I thought it was just his winter beard left over (see pic from Sunday). However, he shaved down Mon and Wed and as the photo above shows, it's not beard, he just has more swelling. He is slow GI wise, but still normal, though he is physically changing; his legs are getting skinnier and his muscle is wasting a bit. His belly and chest are getting more barrel shaped though; meds and just the inevitable path of cancer. He's still not eating like he was last year, but he is eating a little bit more on a daily basis. It's hard for him. He forgets he is hungry easily, and he won't eat unless he is being helped and reminded. He can feed himself, but he won't remember to eat on his own. That's hard to watch.
I will put this out; if anyone wants to contact me to help me get him a properly fitting UtiliKilt I would be beyond grateful. He loved his UtiliKilt from the day he got it, the day he was married in it, even some of his early chemo sessions he went in it. But, starting around last summer, he lost too much weight and could not wear it, then gained it back/ had it go to his belly. His old one does not fit anymore. It's what he wants to wear when he has a Living Wake. Should I try and see if the company can alter it for him? Get a new one at this point? Any advice or help I would love.

Also, in the photos above you may notice a new kitty; the kind, awesome, cool, inspiring, (positive adjective) folks at sent Wash a singing "Soft Kitty". We (ok, me.) named her Zazzles. We are in agreement she's a girl. Wash calls her his "Soft Kitty" though. Leto is just in LOVE. He keeps snuggling up to her where ever we place her on the bed. She's about Aelphie-sized, but unlike big sis Aelphie, Zazzles just sings. Does not hiss or try to fight Leto. He even fell asleep on her last night.
We're both pretty darn happy, and I am very thankful for the kindness; I smile when I see him cuddling his new plush and happy. So again, thank you.

I know there's more to catch up and talk about, but Wash needs me to cut a bagel for him.
Thank you, Dear Readers. Always.

Monday, April 9, 2012

Wash's Words pt 2

Wash had this to say about today;
"After taking aside a few seconds to wish my wife a happy Pi (3:14, we're geeks) I noted it's our anniversary, too, glad to be there to wish her so.

It takes only a couple seconds, and with all this global text world chat everywhere, would it kill you to send this small greeting to your loved one on your anniversary, as often as you can remember. Challenge yourself to text it at just the right minute, so it shows up in the inbox as that recorded time. AM or PM, find the convenient one and fire away.

One additional advantage: You'll remember your anniversary!
I have done this with my wife since we married, every day one of us remembers and reminds the other. We are both loved."
I'm spending as much time as I can today with Wash. MY Wash.
His personality is back and bold today, he seems to be better rested and in a better mood. He is joking, and mature, and able to really speak today.

I'm beyond happy. I've missed my husband so much.
I have no idea how long this will last; will he still be here after his nap? Tonight? When he wakes tomorrow?

So, I'm trying to just stay in the moment. He is happy watching "RuPaul's Drag Race" and "Pineapple Express" right now. He's laughing even a little.

We're also playing "Fetch" with Leto this am.

Brain cancer sucks ass. It has stolen so much.
I feel like in this moment today at least, I have the person who loves ME is back.

For a while, we just held hands.

Sunday, April 8, 2012

Cook the House Down

Had some friends over this morning for a small Easter brunch. It's a different type of family.
I made blueberry Belgian waffles and J. brought over fresh strawberries and grapes to go on top. Wash also picked up a Chipotle Blueberry sauce to try with them, it was smokey and quite tasty.
This morning was pretty shitty, but the afternoon has turned around a bit, and it is better.

Saturday, April 7, 2012

Problem Solving

Friday my mum took me shopping down the street while Wash was napping. Got some nice ingredients, and then poured myself into my kitchen.
I "hosted" a Sedar last night for the first time. I've watched my family and cousins host them for more than 2 decades, but with Wash being so physically weak and tired right now, I knew there was no realistic way he could last through any standard Haggadah. I found a nice one we could pace through with lots of breaks for him too.
I also pulled together a 5 course vegetarian meal in about 2 hours.
We had salad with fresh peas and tomatoes, matzoh ball soup with carrots, deviled garlic eggs, Rosemary (from my garden) and mustard potatoes, and for dessert Apple slices with cherries cooked in a honey and brown sugar sauce (lighter than a caramel).

Wash ate it all, even tried the eggs, which he normally hates. We had a good friend of Wash's (he was the Best Man at our wedding!) come by for a few hours while I cooked, so they had a good time and I got another taste tester.

We finished our service around 11pm ish, but we took our time and I made sure to have Wash rest.

I'm still a bit tired today, but very thankful I made myself wash all the dishes last night. I only have to clean out the Elijah's cup today.

I need to write more today.

Thursday, April 5, 2012

The day gets a little better. Wash went on a walk with me.
We watched "Mars Attacks!" and he settled on his TARDIS urn!

I'm going to allow myself to not be gaslighted (google it) and properly have my anger, then vent it.

Eventually, move on.

Wash is having a pretty good day, I should follow his example.

Not attempting

Families can suck.

They can bring in their own kinds of words, emotions, drama, and rules.

I think I need a break from certain people.

Wash dying is not about YOU. His bad days are not about YOU. When he is having a terrible day and contemplating ending his own personal pain, it really is YOU.

Know what is? Your (relative) who needs you. The person who asked you for support. It's about you promising more times than even someone with Asperger's can count that you will "be there" and then just not showing up.
It's about a personal history of showing no care for literally anyone else.

I'm angry. My feelings on this have been dismissed before.

I can't do it anymore. No more. My husband is honest-to-your-Gd dying. I cannot deal with your personal shit and my own.

Cancer has shown me sometimes the best love, the consuming support? Doesn't come from the people that share DNA, it comes from friends, fellow human beings.
I'm thankful for you.

Tuesday, April 3, 2012


The pain in my heart is intense. It is overwhelming. Tears keep smearing on my glasses, but I can't write without seeing. Too many typos.

I did something last night I regret. I don't often have regrets, really never, so this hurts like a new kind of pain I'm discovering. I feel used. I feel like I have not in years and years. Dirty. Bad. Selfish.

I allowed myself too much hope last night. Too many thoughts and ideas of what Once Was, not what Is.

He can't even keep his days right anymore. The first thing he asks me when he wakes up now is no longer "I love you. I'm happy to wake up next to you" sort, now it is, "What is today, Tashi? What do I have to do? Am I seeing a nurse or doctor today?"
Physically he has sometimes 2-4 hours in a day where he is or can be active. Usually about 2 hours at a time. He sleeps a lot, and watches a LOT of movies/streaming stuff. With his memory issues he's finding it harder to watch TV with commercials, by the time the show is back on he's forgotten what's happened. Watching on DVD or streaming helps with that, he can keep his focus better and enjoy watching.
I try to read to him when I can. He asked me the other day to start getting the daily paper; getting news from blogs and sites is too confusing, so he wants to just look at the paper. He has not kept up with the news in years, I fill him in on the topics of the Daily Show and other things, but emotionally he can't distance himself; it's why I stopped reading him news years ago about the Affordable Care Act, or other AZ laws that have been enacted in the past few years which literally can kill him.

It hurts. I had a moment yesterday to stop that hurt. I took it. I regret it.

I feel like I've cheated on my husband and the man I swore to love to his death, with I'm not even sure. Who ever is wearing my husband as an Edgar suit right now.
I wonder if there's another tumor hiding in there? Eating up my husband, my love, and leaving this poor shell that doesn't even know he is being hollowed out.

He lives Groundhog day every single day, and only barely knows it. It hurts to watch how far he has come down. It hurts to see him give up the things that made him happy because they are just too dangerous or he can't be trusted to properly supervise himself. He's in an Adult body, but he cannot take care of himself. In any real way, he can't.

I know he has Hospice folks in almost every day to check on us. I worry they don't see what I do. They are not here 24/7 and don't always see him fall apart- lately he's been letting help in so they can. I worry since Wash is able to project himself into some level of "normalcy" for sometimes an hour at a time, people don't believe me. They don't see how much he's lost of himself.
Then again, I can't keep my own house clean anymore- not and watch him- I am falling to pieces, and I wonder if they can see that he cannot help. He wants to, he does! But saying you are going to do something for 5 days in a row, staring at it, but not doing a thing.... this is what he does. He cannot be honest with himself or with me. That hurts so much.
I could make provisions, I could make plans, I could ask for more regular help if he would be honest- first to himself and to me. But he cannot. He cannot see that what he says he never does, he has no follow through. That's the cancer. I don't know if it is cancer or Wash though, that does not want to face the truth, or even hear it from me.

It's a sharp Guillotine above my head. He was once an adult who had a complete brain. He was a genius. Now he cannot remember what day it is. He's 27. I infantalize him for safety, win/lose. I treat him as an adult and spend all my time fixing, repairing what he's messed or broken win/lose.
Either way, it is painful for me, and then I still have a blade rushing towards my own head.

Too many tears.

Monday, April 2, 2012

Mostly Eidetic

As today is Autism Awareness day, I'm "out" as an Adult with Asperger Syndrome, diagnosed in 2006.

Wash is having a SLOW day mentally, he is calm, but can really just watch things today, he's not that responsive.

I'm open to anyone who wants to (respectfully) ask me questions about living with AS as an adult, and as a caregiver. It certainly adds in challenges.