Thursday, December 19, 2013


When I got the "bad" news back in early October,  decided not to do the Avastin treatment. I wanted to be as clear as I could be for what came next. My last treatment had been 3 weeks before, and the longer I travelled, the better I felt.

I had forgotten how Avastin makes me feel. In short, crappy. I don't like the way I feel, and even worse, I feel emotional, heavy, and depressed. Being that I was away from it, I am clearly seeing what it is doing to me, and it takes great, conscious effort to bring myself back from the edge. I was nearly in tears yesterday.

I suppose it could be a delayed reaction to the recent news, but I do not think so. I really think it is the Avastin.

How in the world did things get better on my trip, only to dive bomb in the last 3 weeks? I do not understand. I had hoped things were still in a good place, and even getting better.

It is taking all I have to be up, moving around, doing things. I would much rather be in bed, asleep. Last night I went out to celebrate my friend's new home, and I was feeling kinda out of it. I did not feel like myself. At some point I had the thought that unless people knew what was going on with me, they likely had no clue, which made me think about how many people we come into contact with every day that might be in a similar place. "cancer" looks like a lot more than people realize.

I am a lot less patient now. Perhaps saying I am impatient is more accurate. I had to deal with my health insurance today, and after a couple of hours it is still not resolved. It needs to be done by tomorrow, though, for me to have coverage January 1. 

And this is "just" Avastin affecting me. There is not much of a chance I will do chemo at this point. I can't. It will take me away from me even more. I really don't think people know what this stuff does.

I was revisiting today the alternative stuff I was doing. It is a minimum of $300 per month. I will be saving a bit of money when I change plans, so perhaps I can try to pick up on it again. But I was stressing before because I am still without an income. How can I make it? How?

This Avastin makes me feel beaten down. It makes me feel helpless. I am tired. It is hard to function. I have to survive, but I don't know how. I really wish I could get some breathing room. In January I am going to check on Disability. I can only hope that will come through. It would be a good cushion for me to have. Someone told me about a lawyer who can help. The only "problem" is that he gets a 1/3 cut. But if I don't get one, and the government doesn't do what they can on their own, 3/3s of nothing isn't terribly helpful.

A part of me didn't want to write, but another part wanted me to get stuff out. 

Outside I hear the machines and workers that were working on the roof today as I was trying to get stuff done. I am sure that didn't help in the least. What also didn't help were the "helpful" people who kept trying to tell me to go through the damn exchange. There is no subsidy for someone with no income. All there is is Medicaid. And even after I told someone that I can't be treated where I want to with Medicaid, she still wasted my time trying to convince me to check ot out/sign up for it. Why does it seem that people don't freaking listen sometimes?

I am not feeling too great, and I think I am going to go to sleep. It isn't even 6:00 yet, but my eyes just want to close. On top of everything else, my head has been hurting on and off today. 

Not in the best place or mood, can you tell?

1 comment:

  1. Dear Elizabeth,

    I pray your sleep is sweet and peaceful tonight and that you are awakened by joy, even in the midst of the terrors you're enduring. You're right, that most of us cannot understand the realities you are living with day-to-day.

    I know a little of fighting for disability, for medical treatment, in the face of a relentless disease (my husband's severe spinal cord injury and its lasting effects)... it's so distressing. Sometimes it's hard to think there can ever be a good ending.

    I choose to believe there will be a breakthrough for you, Elizabeth, and I add my faith to yours. I hope you can feel the love!