Friday, February 11, 2011


Mostly a calm bit of time for us here. Resting a lot, laughing, and taking a lot of walks. The weather here has turned almost 'nice' so it's quite wonderful for the 2pm or 11pm walks.

The kitties are doing better together. We've figured out how to get both of us and the two cats on the bed all in peace. Seems to be working well for now. Leto continues his training and will "fetch" for me and Wash now and he has started to go out for 'walkies' with me to check the mail. Spoiled, but very smart kitten. Aelphaba is also to my amazement turning 5 next week. I'm lucky to know when her litter came in so she has an actual birth date Feb 14, 2006. Leto we know the month (April 2010) but not the day. She'll get a little serving of wet kitty food for dinner that night and a new catnip toy.

Wash wanted to watch "The Madness of King George III" this morning. It is hard for me. Half the scenes take me back to the summer when Wash was being changed by his tumor (and we didn't know it) and half the movie reminds me of the last few years of my grandfather's life before he succumbed to his Alzheimer's.
Wash does not remember much of 2009. I purposely do not tell him things. I'd rather he not die with the knowledge on him of what "he" did when the tumor crushed his frontal lobe. The anger, the violence, the abuse... sudden and complete personality change. I try my best not to think of the time, not to dwell on that specific past, but it haunts me. I remember.
Glioblastoma is fatal. I try my best to compartmentalize so I can focus on the now with him, enjoy what we have left because we just don't know. It might be 2 months or with amazing luck maybe maybe 2 years. It is hard to say it and hard to accept. However, it is the reality.

I think the hardest thing to face right now (thankfully now that money for this month is not a worry- thank you) is our infertility. There is no hope for either of us to graduate before he dies. We cannot buy a home, or even a new(er) car. There's no job or career for either of us save me taking care of him and him watching me. Nor can we have a child, which is what I know both of us ache for. I see the pain and sometimes tears when he sees the children of our friends or hears about another pregnancy. While we can be happy for them and rejoice at the love that comes from it, it just burns in me- perhaps in him as well. Societal outcasts really. Not by choice.

Cancer is not contagious but it separates us certainly. Wash was 25 when he was diagnosed. Told very likely would not make it to 30. There is no space in society for people like us- the ones who fall between the cracks. Not teenagers anymore and our parents cannot help. They have other priorities and responsibilities. They do what they can. Services are being cut back left and right in our state. We're screwed anyway, but it seems like we just keep getting more shit thrown on top. Higher co-pays, less medicines covered, less doctors we are allowed to see...
I don't often like making comparisons but I have to every time the news comes on with info on Gabby Giffords. See she and Wash both had frontal brain traumas.... but she is getting all the re-hab she needs to live a long healthy high quality life. Wash, who is just 26 has been turned down over and over (even after his oncologist and a social worker tried) for the same type of rehab. The kind that could help him to be more independent in his last few weeks or months. Know what the difference is? They are both young, married, citizens of Arizona, victims of TBI, but Gabby has heath insurance.
So I get to make the best of the days that I am given with him, doing my best on my own to be his everything, help him with everything, and hopefully come April Wash is still alive and Gabby is standing and waving goodbye to her astronaut husband.

The only difference is money.
Death Panels do exist. They are the ones with the AHCCCS letterhead saying that my husband is not worth the cost to the state to keep alive and with a Quality of Life - like the option that has been given to Gabby.

The people who run my state government are arguing over material things right now. They are not talking or trying to save the lives of the very citizens of their state.
Maybe the thought is if you kill/let enough of the poor and sick die; then only the rich will live to vote?

Cannot understand how else to rationalize it.


  1. I understand your anger. Folks my age get labeled as cynical old farts. You don't fit in because you've seen the truth - life isn't fair. Bad things happen to good people and the rest don't notice. You're much too young to have learned that hard truth. However, your peers still believe that life is going to be very linear and that they are firmly emplaced on the Yellow Brick Road.

    I wish I could tell you that you're wrong - that people are treated equally, and that there is enough good will to go around. What I can tell you is that there are good individuals out there who are willing to do what they can, when institutions fail. Is that enough hope right now?

  2. I hope you guys have a nice Valentine's day.