A Turkey Based Meditation

I had a moment of absolute clarity yesterday. On food, I really resent my family.

See, they became vegetarians in the 1970s. And my older brother was veggie. And I was born veggie. And for the first 10 years of my life, and the first 15-20 years of my parent's time together the whole family was vegetarian. No matter where we were at in the world we did not eat meat.

Then they changed.

My Brother was the first to start eating beef; after he moved out. Then when I started High School my mum was eating meat.

My home changed.

The food changed.

The scents and smells of my home, my safe place changed.

One of the biggest (not moral) social upbringing I had was suddenly just gone. No one ever ever discussed it with me; either their reason to eat it or a notification that my house and diet might be changing. What was so important growing up, "Don't ever eat meat, we don't do that!" was suddenly null and void.

I am seen as the outcast here. I am seen as the bad person for not "liking" the smell of meatflesh.

This is the same family who I suppose just don't remember every time I remind them of my old job and the fact that meat cooking smells like human meat cooking to me. It's not a tasty or pleasant scent to be around for me. It's strange and because of my work on cadavers and victims I sadly know what burned and cooked human smells like. It's revolting and not really something that puts me at ease or into a pleasant mood.

I still have not ever had meat. I most likely never will. I don't begrudge the people who eat meat, again it's not a moral issue to me.

But I completely resent that my family brought me up one way, brought our whole family up one way... then abandon it and get pissed at me for not "enjoying" the smell of cooking meat.

They created who I am in that respect, and I just find it so demeaning that the way they brought me up, the eating habits I was given from birth are suddenly shit to them or something. I'm the same- they changed!

And they hate me for not changing too.

There is a good reason why I hate family dinners and big meals and such. I think this is a big part of it.

I don't need to have the vegetarian stuff pointed out or read to me from a menu, I have eyes and can read myself.

Maybe I'll try it another way to describe; you are born into a Catholic family. They are all Catholics, you are too, the family goes every week, prays together every night for the first 10, 15 years of your life.

Then in a few weeks your entire family says they are now Hindi and they just bemoan that you can't just drop kick Jesus and start loving Kali.

Each time I try and articulate this though, it fails. I either can't get the words right or the blame and discomfort get pushed back onto me as it's my "choice".

They could choose to respect me too.

Or, maybe I am wrong for wanting to hold onto my identity.

- Thanksgiving went well for my family. We went out to a restaurant this year. 4 star food. And a chef who forgot my vegetarian oder.

I'm glad that crap day is over.

72 hour Groundhog day

Wash has a cycle he repeats about every 2-4 days. Good day, good day, good morning-shitty afternoon- terrible evening.

It's something I've almost gotten used to. He cries. He hates. He yells. He cycles through and faces for a few hours his own grief of dying. And vents it out on me.

He's fine now, back to his normal jocular personality. Last night was a different story though. Last night he just was so upset, so mad. I had made a comment to the effect of "If you keep lying to your family and friends about how you are really doing it only hurts everyone- me and you included."

This led to the "I have 3/4 of a brain, I used to do this, and I can't do anymore, so I'm worthless.... etc" Just imagine that for like 3 more hours.

Of me listening to that crap, and telling him it's crap, and building him back up. As best I could, which is getting worse and worse. It's so hard to get through the days people who are not caregivers just do.not.understand. He's not a child, but needs to be watched and helped like one. He can sometimes make adult decisions, but he still *is* one. He fights to live every day, but he draws that so much from me. I've been willing him to live every.single.day for more than a year now. I'm beyond tired. I'm at the point where I barely exist as a person or as a separate identity. I feel drained of life.

And every few days I have to work even harder to keep him alive for the next day.

He's my best friend. I'm already trading my life, my will, my freedom to him. I don't even know what if anything will ever come back.

Cancer seems to take everything but Hope.

Worries

I think (from our talks) Wash is leaning towards stopping chemo after his Dec round and going on Hospice Care.

He's 26.

My thoughts on this will take some composing so I will come back to that.

My happy thought for the day?

He tried to brush his teeth this morning with baby lotion.

The toothpaste tube and the lotion bottle are no where the same size, shape, or even colour but his brain and muscle memory told him to do it.

He says he got about 4 brushes in before he noticed there was no "foam" and it tasted different. (Chemo has fried his taste buds)

No harm, not poisoned.

That's brain cancer.

Laugh or cry.

So much, so little

My day so far;

*Almost 2 hours (so far) between our Insurance, his cancer doc, and our pharmacy. Basically, the insurance is being a dick and demanding the dr's office do the same paperwork over and over because they can't understand a neuro-oncologist is both a neurologist and an oncologist.

So they are refusing to pay for Wash's meds.

And as a bonus we're getting a new higher co-pay so I'm back to pretty much not being able to afford meds. $4/med is not that much.... until you do the math on more than 20 Rx's a month. For just him. Plus all my meds- at least 5-6 scripts a month to top.

I just want his meds so he doesn't die *right now* and his meds so he isn't vomiting or in constant pain.

And I flattened a tire so I will need to replace that ASAP with money I literally don't have.

I think I'm gonna go finish laundry and throw some darts at a photograph of our "dearly elected Governor".

How's your Monday goin'?

At least the active chemo right now is over. "Hard" part, eh?

One year; Beating the Odds

He has next month's chemo to get through and then we have "the talk" with his Neuro-Oncologist.

There are 3 options he has right now, and they are pretty much the same ones from this year- again providing he doesn't have a new tumor grow in the next 6 weeks or so.

A) Stay on Temodar for another 2,4, or 6 months.

B) Move on to a course of Avastin or enroll in an Avastin/Comptosar trial for 2011

C) Stop chemo and move MRI screenings up to every 2-4 weeks. No "active" treatment; at this point if he wanted we could then qualify with our insurance to get Hospice Coverage.

Meanwhile I'm trying to figure out where we be will over the Giftmas holidays.

Working on projects, trying to find money to pay always continuing bills.

Growing in the garden; harvested my fall peppers and we have winter tomatoes growing and even a winter melon! I pulled a gallon's worth of Basil leaves the other day and gave them to my mum to cook with. I like sharing, that's part of the "goodness" of a garden; it can feed one physically and spiritually.

I'm averaging about 3-5 loads of laundry a week. Maybe 1- 1 1/2 loads are my clothes. I honestly have no idea where all these dirty smelly clothes come from or how he could produce so many in such a short time frame. It's amazing.

Based on my calculations on fill dates I should have about 10 trips to the Pharmacy to be made in the next 7 days. Le sigh.

Leto has recovered from his neutering. He now officially is a 7 lb male! Aelphie and him are getting along a bit better, I even have pictures of them sleeping within 2 feet of each other. Cats. Silly fur tubes of socialized behaviour.

Do better for others than what you do for yourself.

I could make you understand

So... this week. I'm not going to get into parts of it now, it's been both good and bad.

I want to write about something else a bit today. Lately I have not wanted to speak much on many issues. I feel like instead of turning mid-twenties as I did this week, I feel like I am at the end point in my life instead.

I feel both elated for the people I love and terribly bitter at my own fate and life. I hate hearing the voice inside my head saying "I told you so!". Bothers me.

Despite attempts when I was younger it seems I do not and will not have an "ordinary" life. There are many moments of happy calm and stability, but then there are those deep seated moments and days of terror, the dark long nights of tears for fear of a lack of tomorrow, the amazing feeling of just existing with another human being. There are constant stresses and worries. I am torn in so many directions so often I keep losing track of my own self.

Humans all define their own happiness- mostly based on their social construct, but also upon personal tastes. I often wonder at night when perhaps I should be sleep about my own happiness and what will become of me after he dies.

I feel so used most of the time. Used up. The people I associated as friends have mostly abandoned me. The friends who stayed to support Wash took me in. It seems... imbalanced to me how people treat the ill person and their caregiver. Sometimes people offer to "help". That is true. Generically. It is left up to me to separate tasks, assign them, follow up, double check, verify, confirm... it's easier for me to just attempt to do everything and burn myself out than it is to try and figure out how to explain and assign the help I need.

I wish someone would offer to help with laundry. Even just folding clothes.

Or making us a meal once a week. With regularity and reliability. Someone to take Wash out for a few hours once a week so I can have a break.

Someone to offer to pick up his meds so I don't have to make a trip to the Pharm every 3 days, or week, or every day. Someone to specifically say "Hey let's take care of all the bills!".

But those people are absent from my life. I have to find the tasks, and then people who are willing to do it, and ask them, and then hope that not only will they follow through and help, but that it doesn't come at too much of a cost to me. So far it seems like much of 'help' offered comes with some attachment.

Why does it take more work and responsibility on my part to allow for someone to try and make it less? I just don't get it.

I don't understand people. I don't understand relationships.

There just are not enough descriptive words to express it all.

I feel like it was my 64th birthday this year.

What is the Meaning Of Life?

- I get it now. It's a very good "haha joke is on you" answer.

Obligatory Post

Happy Birthday to me.

I plan to do as little as possible and laugh as much as I can.

And no ambulance rides this year.

Quick Reminder

The benefit for Wash is this Sat, so if you are local to us come on out and say "Hi".

And fold some motherfraking cranes to help. ;) Please.

Again, if you can please we are still accepting donations. His cancer hasn't gone away and neither have the medical bills. If you cannot we would also love prayers or postcards.

The link to the event info is here;

http://www.facebook.com/event.php?eid=116806221713430

360 days

I don't feel like I am 'coping' or that this existence is 'living'. I do not resent my friends and family for being able to live; to get married and have a wedding, to get pregnant and have a/more child(ren), to have a savings and be able to travel, or go out for a dinner or to a movie...
But I wonder, I wonder if they even stop for a minute every.single.day. and know how lucky they are. Are you truly thankful and can you see all the wonders you have?

My problem is I cannot always let go of the pain at seeing people Live, and knowing that it will never be me.

360 days ago I ceased to be me.

I don't know what I am anymore.

Roll the Dice

Short entry for now, I will come back after a good nap to write some more. Have been fairly busy the last few days getting events lined up, things timed right, errands done, 5 loads of laundry wash, dried, and I folded every.gorram.bit.

Lots of stuff. I'm a little behind on my written correspondence but I will be doing that shortly. It's important to me not only to keep in touch with a few people and start sending out my thank you notes from birthday cards, but I have a friend who lives now completely across the country. And I really consider her a friend. And I miss her a lot, and the conversations we had- she's brilliant- and I really just want the time to pass by so I can see her and hear about all the wonderful and great things she's been up to. So I've tried really hard to send her a card almost weekly. And I've lapsed a little, so I am going to make myself do one tonight.

Speaking of, I've been thinking and reflecting on my birthday, and the various anniversaries around it. Not many outside my family know but my grandfather (Saba) whom I was very close with shared my birthday. I was a bit early- maybe two weeks- and I like to think I just really wanted to 'crash' his party and share it as well. It certainly gave me a bonding point with him that aches every year as well.

Wash is trying very hard to do something good and nice for me. I know this. I wish for myself to be able to let issues go so I can enjoy and be thankful for his effort and work and not just fear the whole episode. Irrational fears are the worst, as I base so much of myself in reality and the literal.

It's hard to write of the daily pain of striving for some status quo, some level of 'stability' in a world where there is total certainty of a short (hopefully not too painful) death around the corner. It is hard to convey to others that when eventually he goes a part of me will die too. Some days I fear it is too big to keep going after. If a Time Lord can't really live without two hearts, can I survive when I lose half of my one? Questions, always questions. Does the madness spread inwards until I destroy myself, or will it fan out burning out all of humanity, the world?

These are things I do not know. These are hypotheses that may not even come to pass. But the ideas are still there none the less. They stay swimming in my head, submerged in low water floating and treading until the still of the night, or a calm moment when they chose to rear up and bite into my small amount of self security.

How does one describe that the worst day of their life is every single day since then- that the day replays over and over never changing always that idea of fear, that dry and almost salty rusty taste in the mouth with the memories of the choices and the consequences?

Does English even have a word for that?

Leaving that aside for a moment, we have a friend in town this week and it's kickass. We actually need to show her that one. She came in for a business meeting but is seeing and visiting us in the time in between. It's beyond wonderful really to have someone to talk to, to listen to. She's someone who's been personally effected by a loss to brain cancer, so she can really appreciate the unique situation it places on people. It's a sad feeling to have to realize and know that perhaps without a death we would not really know of each other, but there is good in that as well to know that friendship and help, and positive things have come of the end of a life.

It's great to talk and play and see other total geeks out there like us. Honestly, I thought watching Caprica last night was even better with another friend on the couch.

So, I have her for a few more days, then Wash gets his benefit, the weekend ends and it's my birthday.

I will get back to that idea later.