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.