Low enough

I will write a happy post on his wonderful show a bit later. Right now the tears make it hard to write.

I can't stop seeing GBM info out there. I can't turn away from the list that shows person after person with this disease show a "lifespan" of months. 8 months, 1 year, 15 months....

I want more time. I want him.

I don't want him to die. I don't want my husband to suffer. I don't want him in pain. I don't want him to forget who he was.

I'm so scared today. I'm scared of the chemo, how it hurts him. I'm scared of his brain. I'm scared of what will happen the day he wakes up and doesn't know who I am.

So, I will cry right now while he is asleep. I will write out how my heart breaks every minute he cannot be "normal". Or when I see children and know that is a comfort I will never know.

Some days I feel a very young 23 years old.

Some days I feel so very old and sad.

And no. I don't think of my own future. I still cannot imagine being alive or wanting to live in a world without him.

I just want my 60 years together.

One of my biggest and absolute fears about all of this is that when Wash goes, I will turn into the non-functioning Adrian Monk.

He's my Trudy. He's my reason.

Side effects include

Been an interesting time. Lots of trips back and forth to St Joe's Hospital this week; poor guy. Chemo hit him hard this week. All started with a mix up on his Rx; he takes 300 mg of Temodar as his mantinence dosage and they gave him not 15 pills of 100mg as he should take but 12 pills of 140 mg. Not the same thing at all. We got it corrected, but he started chemo a day late so it's Sat and he's feeling pretty gorram shitty and I am sad for him.

Poop.

Since he's been fairly bed bound we've been working on his stand-up act this week. He shamelessly steals my material, but I guess since I share with him it's not stealing, eh? He can do funny delivery anyways, I'm just a good writer. I'm getting him ready to do a showcase this week so he will have the best bits ready for his Sun performance at the end of the month.

Laughing helps to deflect all the shite around us.

Garden wise things are looking fairly good. Two of my strawberry bushes are looking a bit cooked and my rosemary is dried out despite being well watered. I've also lost a bell pepper plant. However, my cherry tomatoes are coming in, I have tons more tomato and cucumber flowers, and new beans and peas growing. Plus I'm cutting and selling some herbs this weekend; basil, mint, oregano, and I'm cutting some thyme but not selling it. It'll be used as a oil scrub for Wash's skin since the direct oil can help kill the MRSA bacteria. My flowers are also very happy and I've gotten several small sun shades up in the back now so it's even cooler temperature wise. Getting all nice looking for the summer bbq season; which we will be starting end of the month. I've also finally got some corn growing so hopefully by July/Aug I'll be eating corn! Yay!

The days of this week haven't been great to either of us. My depression has been horrid and enveloping. I've been sleeping tons and just wishing a non existence on myself. He doesn't like to see me like that. I don't like forgetting why I am alive. However, I concur that I am not directing enough energy to my own likes and pursuits. I forget what my own passions were. I can't find new dreams, new goals unless I actually look, and Wash is a handy excuse for me not to look. I can find and make time to figure out where to go and what to do with my life after this... settles. After some kind of stability comes to us. I hope it comes while there still is an us; that's it's not a vain pursuit to keep myself alive after my love dies.

I got some books and movies at the library this week. The reading should do me good. Always seems to. My Aspie brain tends to kick on in high gear, get attached on a subject until I have mastered or learned all about it.

We've got some interviews set up with TV and print media this week. I am scared and excited. This might bring us help; no matter the cost to myself. It's bigger than me. It's for him, and those that don't have a Tashi or Wash to fight for them and Quality of Life.

Now I'm just rambling. He's sick, so I'm gonna go hold his pretend hair back as he grabs the big orange bucket. I made him some mint tea, hope it helps.

I hate this.

I hate watching him in pain.

Watching him this sick. This hurt.

At least his parents and brother don't have to see this. I can bear this alone for everyone else.

I so had Jessie's girl

Oh wee T-Shane.

Ohhhh. Weee.

Last night's gLee! was good enough for massive good dreams and great tunes today.

Poor Wash. He's all barfy today.

Miss-Takes

Dealing with a lot of shite lately, which without medication is making life quite unbearable.

Wash looked up some withdrawal effects of my meds; seizures, migraines, irritability, insomnia, nausea etc.... it's no fun. At all.

So imagine my excitement when I find a program through the drug manufacturer that allows for people with no insurance (me!) to get them for only low-co pay cost! Hoorah! And you can pick up 2 months the same day as you enroll! Double huzzah!

... fine print... must be filled out and sent in with follow up by my doctor.

The doctor I ceased to have when my insurance was cancelled on March 31st. Frak.

I also found out that though Social Security tells Wash they want to know if I work more or less (us) they negate to actually inform us how to do so. No where on his paperwork, no where on their web-site. So... dead end there too.

I applied for unemployment today. I'm expecting a volume of paperwork from them by next week to return by me so I can maybe get some funds coming in. Maybe.

Also I have exactly 5 days in which to re-file my food stamp application ; it must be done between those dates only, and I am terrified 5 days is ample time for them to frak it all up on their end. The only good thing is that due to me not working anymore - well, technically. I consider the 18 hour days caretaking as work but since I'm not paid to keep Wash alive I'm "unemployed". So, sorry, as I was going on, the nifty little state DES widget informed me we could actually get around $340/month in food stamps once they do the renewal and note I'm not receiving any income.

Small small bit of maybe good news. Come next week we shall see.

Voting today! Vote, vote vote! I'm taking Wash down to vote too.

Aside from that I got the clothesline installed for the summer the other day and the new seedlings have started coming up; beans, peas, herbs, corn, broccoli. I also harvested some cherry tomatoes the other day. Basil is looking and tasting great these days too. And enough mint I am going to pick and sell some off this weekend. Good times in my garden.

Too much free time

Tashi;More probable good news! New Times reporter talked to her editor and they want to make us a feature/front page story in June! More interviews to come, photogs etc. Let me know if you want to speak to the reporter on our behalf. Man, who wants to write into TLC to get us our own show? "The Cancer Couple?"

Eva:

What would the TLC show involve, do you think?

Kevin;

Living with cameramen. Though we'd have to make our outings much more interesting. Think I'll leave the "Bungee Jumping" episode proposal to the producer.

Gretchen: love it...

Tashi: lookin' for a sperm donor? Reality show style? 'Rent My Uterus'? Um, Life with No Hair-style!

I could go on all day with these.

Tashi; Gretchen; dude if you, Mel, and Liam moved into a giant house with us it'd be the PERFECT TLC show!

Gretchen:AAAHHHAHHAHAAHHAHAAHAHAH that would be the BEST show ever. It could be a Gardening/Basic Human Rights show.

Denise:This is a really important story to get out to Americans. This is one of the very big reasons that we need health care reform. And most people don't realize it until something happens to them.

Kevin; Not while I've still voice, not while someone will listen. I'll even sink to a reality competition:: "Father My Baby!" snrk!

Ohhhh, I even have the catchphrase when we have to eliminate someone: "You... will not be the father!"

Tashi; I request we move into the same neighbourhood as Ed Begley and Bill Nye.

Kevin;And they compete to build all five of us the greenest house...

IN SEVEN DAYS!

Gretchen;Good Choice! Bill Nye could donate sperm to us both. We'd have smart, albeit funny-looking, children...

Kevin;BRILLIANT!

Tashi; Ok, since TLC does love doing shows that work in the “TLC” I’m thinking; Two, Lesbians, and Child, The Living Couple, Two Living with Cancer, Traumatic Life Changes, Trying to Live Crazy, Twenty-somethings Living to Challenge…. I need a job. I could go on.

Denise:You all are so funny!

Words of Wisdom

"Here we are dealing with human beings, with our neighbors, brothers and sisters, the poor and invalids ... unproductive -- perhaps! But have they, therefore, lost the right to live? Have you or I the right to exist only because we are 'productive'? ... A curse on men and on the German people if we break the holy commandment: Thou shalt not kill.... Woe to us German people if we not only license this heinous offence but allow it to be committed with impunity!" Bishop Galen 1941

The Accident

So last night was not good. Had a bad afternoon, managed to save it that evening, then disaster again.

Wash had an accident in bed. On my half. Of course. Got it cleaned, got the bed linens changed, but I could not sleep on my side until it dried out. I slept on the couch.

I know he did not do it on purpose. I'm not mad, but it is just endlessly frustrating sometimes.

He is a 25, almost 26 year old grown-ass married man. However, his brain sometimes is stuck on a 5 year old setting. There's this balance I as his caretaker have to have; he is an adult, his is to some degree independent. He is also incapable of looking after himself or in his own best interests. I have to give him his freedom, and at the same time be able to watch him, catch him, clean him, and make sure he lives- lives well.

It's hard. To say the very least. We had his pre-chemo appointment this morning. He is "plateaued" as far as his neuro-oncologist thinks. He shouldn't get much worse brain-power wise, but he might not get much better. Honestly, I worry about him going back to school; being able to finish his degree. He is so close, and I want him to walk and get his diploma before he goes. I just worry with his total lack of multi or dual tasking and his severely impaired memory if he really can.

I haven't been too great either. Out of my anti-depressants and I'm a frakkin' wreck. My anxiety and depression have come back hard at me; I'm shocked at how quickly it hits me, those dark thoughts and feelings. It scares Wash and myself too. I'm strong enough to admit that much as Ihate medication I need it right now to be an effective caregiver for Wash. He deserves a healthy partner. He needs and requires it for himself to live; and as long as I am not properly medicated it's hard for me to be there for him. I can't afford the pills without insurance; it's well over $200/month just for the anti-depressants. Since they canceled my medical insurance in April I also had all my therapy sessions cancelled on me. It's hard. I can't talk to Wash about it all, and I don't have close friends to confide in. My family is also unsupportive of me and do not respect my priority of my husband first. Makes for a lonely and often sad existence.

He's napping now. Cuddled up next to me. Said he couldn't sleep in the bed last night without me. Cat's asleep up here too. It's a nice moment. It's these times I cannot remember when it gets dark in my head. The little things I can be thankful for/of. My garden is blooming and wonderful. I picked 3 huge strawberries for my cousin yesterday at our Mother's Day brunch. I love the growth and life out there. I'm saddened though that one of my red bell pepper plants seemingly has suddenly died. I have to look for the receipt, I think I can get a replacement for it.

I've been so lost lately. I have never not worked or not been in school. I'm not quite sure who I am as a person anymore; so much of my life is all about him now. I don't really know what I want, or even if I want.

My asthma has also been acting up lately; an odd thing now that it's getting warmer and drier down here. I really half hope I end up needing to go to the hospital at the next attack; I can't afford my control inhaler anymore ($200 + a month) and within like, 2 weeks of going off cause I can't afford to fill it my breath is a struggle. I'm back to using my rescue inhaler several times daily; when I was medicated I used it maybe once a week! I'm incredibly saddened by the fact that I have to have my own health suffer again right now. My state and Government have turned their back. I've become a number only to them and it's not the "right" one. So, if I get 'Need to be Hospitalized' sick I automatically get covered 'cause at that point the State again realizes that I am, in fact, sick.

Bastards.

I want to find a way to sue.

Dark chocolate to Water

Today is ever so bitter sweet to me.

This should have been my day this year. Now, I'm fairly sure it never will be.

Breaks my heart.

yea. off to go cry now.

What do you say?

So many of my friends this week have either announced their marriages, or first/second pregnancies.

I am happy for them, quite. It just... hurts... to know that I am denied everything I want in life.

I want a child with my husband as bad as I want him to be alive in 2 years. But there's not a good chance of either of those happening.

I feel like a failure lately.

We have a media interview with NBC again locally on Monday and with Village Voice Media on Tuesday.

The only help the State of Arizona can now give us is advice to "Have you thought about moving to Canada?"

Yes. Our Dept of Economic Security judge told us to move out of the country.

La vie, non c'est ci bonne.

Taking Chances

Not everyone gets a chance to start over.

I haven't "not worked" in some capacity since I was 16 years old. I'm almost 24 now.

What do I do? What do I want to do?

What do I want to be?

Questions to ponder today.

Well that went not well. I am now officially uninsured all appeals over and denied. I also had to stop working officially so i am unemployed now too; Thanks AZ

the upsides of brain injuries

just rescued Wash's mobile phone from the toaster. what it was doing in there neither of us know, but I'm choosing to laugh at this. the mobile wasn't even toasted! i'm making him put this in his stand up.

Wynds and See's

Sunday night with Wash, me, a sleepy kitteh cuddled up with a sock, and Stephen Hawking on the telly.

Good times.

A fairly good day overall, probably the best I have felt in a full week.

Sadly, I burned myself last night on my left palm- a second degree one. Covered it up with layers of aloe vera and lidocane. It's actually not too bad today; I can bend my hand and as long as there is no direct pressure on the burn it does not hurt. However it looks like I will have a scar about the size of cherry pit on my palm.

Won't be the first or last.

Wash got a game in of 40K. It taxed him a lot. I say this as he got extremely forgetful about things today and has had an off sense of time since he woke up. To him the world is "running slow" today- he thinks time is much slower than it really is, he could perceive several hours as just maybe 2 or so.

It was hard to drag him from bed this am.

I sold some more herb at the Farmer's Market across the street; I picked and harvested, Wash took them over for sale.

It's really not a bad return rate. So far from my oregano alone I have now earned back the cost of the original plant, a few more weeks and honestly I'd say in a year we've recouped the initial investment from our garden.

Victory Gardens for all.

I started my first VG in 2006 and have had one since at each of my various homes where I have lived. They were mandated during WWII and I can see why; it's a great way to help ease the burden of buying food, it helps bring more fresh produce into the everyday diet, and it free's up government subsidized food for the needed market- soldiers or our own needy at home. I highly encourage everyone to do it if they can.

Wash's robot comes along well. I think he spent some time on it today earlier.

I've only had two nosebleeds today and both were this am- none since. Which is good as I hate being this constantly lightheaded. Suckage.

I'm hoping next week to make it to church. Would be nice.

There's so much to do and going on this week. I worry. There's so much to go wrong. There's a lot at stake. There's much to gain too. Lots of fighting and it's dirty debate no holds bar style that will put my own life and perhaps Wash's at stake. We will get through. I will.

Banish the dark thoughts from my head tonight. Banish the heinous visions.

May Day

Ah Saturday- you bastard. I am going to be stuck inside on the coolest May 1st we've had in years. Dick.

I'm still sick. Having uncontrollable nosebleeds that began a day or so ago. This gives me quite awful headaches and I've had balance issues too.

Plus, my asthma does not help any. If my breathing gets worse I'm going to the ER today.

Wash is doing a pretty darn good job taking care of me. He tries his best, and does what he can. He loves me, I know.

But I need to be better to take care of him.

He's been working on an assignment to keep his brain active and healthy- he is building a little robot to pick up a ball and then set it down again.

This means for the past two days my bed has been filled with legos/robot parts/batteries/wheels.

The kitteh loves this all; except when we take the parts back from her mouth. I swear, that little kitten loves to eat weird things. Bottle caps, rubber bands, condoms, fruit wrappers, anything made from cellophane...

Still no word from ******. I'm trying not to be upset over this. I have many wonderful people in my life who are willing to take that role. Who want to support me and help me. Who understand that I love my husband.

I'm trying to rationalize away hurt. Can't really be done.