The Golden Path

This shall be brief as I still have to do my last class and turn in my two papers today. Also, kickass and go me for getting my Finals done and whatnot!

So, I got a call from the gal who manages the donations the Fraternity (Alpha Rho Chi APX) and a bunch of you kind people under the auspices of a wonderful blog donated a large chunk to us. I am still mostly speechless, so I will compose myself and write more on this later.

Right now I'm just amazed by the kindness of strangers and the thankfulness I have. You all are taking the worry off for about two months; utilities, heating, a portion of Wash's medication, Doctor Co-pays, Gas to get to the hospital, Warm hats for Wash, socks for me, cat food...

The relief of not having to worry about some things, at least for a little while, it's one of the best gifts I could get right about now.

So, this Hannukah/Christmas so far I have gotten to celebrate crossing the 13 month mark with no tumor recurrence for Wash, booked my birthday appointment for the Gal's Salon day (and even the Wash-sitting is taken care of!) got pumpkin pie, 2 new tires, and a load of stress taken off me financially so I can focus on the mountain of paperwork I have to fill out affirming that Wash is still alive, but still dying of cancer so he needs medical insurance.

I'll have more to say later, but for right now please accept my humblest thanks to all the donors who have sent help.

Thank you.

Too much talking these days

I have been buried in finals these past few days. Will be through the weekend. So much reading and writing. However, it's good for me, and I like the chance to focus on a way to improve myself. I learn with each paper I write.

It's been a long few days.

Wash has been struggling with life lately. His MRI was this week, thankfully and astonishingly it was clear. That makes 13 months since his surgery. Defies odds for Glio. However and naturally it caused a bit of stress upon him. Which then passed along to me. He was not sleeping very well. Therefor, I don't sleep very well. Worry goes hand in hand.

He is on chemo next week.

We spoke to his oncologist. Right now Avastin (different chemo) is not an option. So he can continue his Temodar for another 2-6 months or stop chemo altogether. We're meeting back with her in about 3 weeks to go over his decision. I've told him I'd support him whichever was his choice. That doesn't make it easier for me to do, nor does it maybe make me happy, but this is not about me. That part is about him, his physical body, his Quality of Life and his decision. I'm just there to support him and see his wishes are followed.

He at least has finally agreed to try an anti-depressant. I'm really hoping it will help. He's been listless lately and just overall depressed. The truth he has been running from for a year has finally built a wall he can't ignore anymore. He has cancer. He has a deadly type. He will not live to be 60 with me and be a grandfather. Now, we might get a year or two more. Maybe three. And those can be good years filled with wonderful times. But he is a 26 year old man. He is having to really and finally accept he most likely will not see his 30th birthday. He's been in denial about this for so long. I'm not "giving up" on him nor do I think this means he needs to not live. Accepting his disease allows him to be free of the fears and enjoy what he has, not what he might have lost.

It's hard for me to watch this. It's hard for me period. I didn't expect it to be easy. But I honestly did not know how exhausting it would be. How tiring responsibility is. How much I long for just a break. Not the end, but just a true rest.

I haven't had 24 hours off in more than 14 months. Not even a "day". I've had three or four sets of about 4-6 hours when a friend came and Wash-sat for me. In a whole year.

Just imagine working 24 hour days, 7 days a week for more than a year. No "Saturday" or "weekend" for you. Just the constant care of another human being.

Tiring just thinking of it, eh?

And the rest of my life, the world goes on. I still have to focus and file paperwork, pay bills, beg for donations, beg the State to unfreeze the budget so I *might* get funds, beg the Utility company not to turn the power off, clean, garden, clean, cook, drive, manage, repair and everything else that everyone has to do in their everyday lives as well. No one else stops because my husband is dying of cancer. It's only my microcosm that is effected, the gal on the other end of the phone working for the Dept of Economic Security doesn't care a shit if Wash and I become homeless or if he dies destitute.

It's hard to have to figure out how to explain to him that no one seems to really care. That being a good person is just not enough to matter. That being so young is just not enough to matter. That dying under horrid conditions worrying not only about fighting chemo but fighting to make sure there is food on the table and gas in the car to drive to the hospital just doesn't seem to matter.

To the Governor of our State Jan Brewer he does not matter. She will be responsible for his death and never once think of him as a person. Senator John McCain and Jon Kyl both were solicited to help my husband keep his health insurance when he was in active treatment. Both Senators refused to even return a call or send a form letter. They will not care about his death, or how much he may suffer without medication. John McCain will never have to worry about paying for anti-nausea medication while undergoing chemo. Yet my husband suffered a whole round without any medication to ease the pain of chemotherapy, due directly to Kyl and McCain's voting. Congressman Harry Mitchell told a voter he wanted to meet Wash to "look into" the health insurance issue. Yet he never once made an attempt to do so, even after we contacted his office personally.

These people are legally in charge. Legally they are killing my husband. And he has to live with the knowledge that they do not care at all about him, his life, or his death.

I find it appalling. I find it disgusting. Morally reprehensible. And every one of them has lived decades longer than he will get.

Life is truly unfair.

I have to take joy in the small things. The happy moments. The colours of the sunsets here. The tastes of the tomatoes grown in my garden. The utter contentment of falling asleep next to Wash. Hating those who have what we are deprived of does nothing. It eats at the soul. I can mourn what has been lost. Not what will be or could have been. And I can choose to move on and enjoy every day of life I have with him. We don't have money, jobs, health, or always food; but I am thankful for every moment of life and love I have with him and am aware enough to be thankful for it.

Unconditional love trumps indifference to suffering and death every time.

If you have health, love, home, security... share your good fortune. If you are old enough and outraged enough remember the stance of those elected officials towards the poor, ill, weak, young, and vulnerable. Remember the utter indifference to suffering of the people of this State. Remember and do something.

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