Tuesday, September 29, 2009

Trying to close the door on Grim who has come to talk about the reaping

Grandma was way out of it today. She can't eat without help, and doesn't know what she wants when she has help. She is being kept comfortable, but near as I can tell will basically starve and dehydrate to death. I try to feed her and she gags. I give her drink and she says it's burning her throat. It's hard to watch, but death happens to us all, and there is no pretty way to get it done.

I think the best we as people can hope for is to not leave too much unfinished business. Sadly my grandma has bad blood between herself and her four kids that probably won't be made good before she dies--unfinished business. I would not have gotten to know her had my sister not looked her up. I am glad I have had the chance to be with this grandma. I didn't have that opportunity with my other grandparents.

Friday, September 25, 2009

Musings about health care from a frequent flyer.

The current debate over healthcare reform hits home for me because I'm a frequent flyer, and soon the healthcare my husband get through his company will dry out. I believe his company is paying Cobra until December. Husband is laid off as you may remember, and I'm not fit for dog meat.
Having been in need of our state of the art healthcare system, I've have had a few revelations:

  • Doctors do a lot of guessing and don't get much time with patients, all to the patient's detriment;
  • It appears (at least in my case) that getting routine checkups makes no difference as to one's long-term health (see above observation);
  • It is problematic that health care is a "benefit" of one's employment, especially in our current recession;
  • As such, not everyone who needs government assistance is a freeloader;

In reviewing my ten-year journey with brain tumor symptoms, tests and the like, I feel like I received quality care only from my surgeon and the oncologist and nurse practitioner who handled my care after my tumor was diagnosed in 2006. I will always question what in the world happened between 1999 and 2006 that fell through the medical cracks. I had more than one scan, more than one trip to the emergency room in that period and no one knew what was wrong with me, but acted like they did. And we have the best health care system? Really?

Thursday, September 24, 2009

notes on life in eden

Happy belated to my brother in law, Nick Schiller, MD. Doctor Schiller turned 45 yesterday, and doesn't look a day over 40. What's most lovable about the doctor is that he is willing to do anything for money, including taking me to the prom, as a favor to my sister. That's one of my proudest moments--having a paid escort to the prom.
Grandma has taken a turn for the worse, and is now receiving hospice care. She has fluid in her lungs that isn't treatable. I've been going to see her everyday, as if that can somehow stop the inevitable. It can't.
I will soon be busier with my volunteer activities with school starting. I also become connected to a newly formed non-profit called the Turner Syndrome Foundation of Oregon, and an hoping to do some work for it. And I have also joined a writing group for cancer survivors that I hope will improve my blog's content, and keep me out of trouble.

Tuesday, September 22, 2009

moving forward?

So I've been advised not to look for work. My husband is out of work, but is "networking" in an attempt to change that. If only the attempt was enough, but it is not. We can only go so long with this uncertainly. We're scared, especially since I have my illness, and our health insurance situation is in flux.

We tried to have a family conversation about it last night, but the son got upset at the notion that we won't be able to do things like go out to dinner, and buy him $40 books or games anytime he wants.

I thought we had used up our bad stuff quota in 2006, when Bruce's dad died, two good family friends died, and I got diagnosed with a brain tumor, but once again I was woefully in error. It's our time again.

So borrowing a line that I think belonged to Bette Davis, I'm going to have some chocolate; it's going to be a bumpy night.

Monday, September 14, 2009

Portland Brain Tumor Walk 2009

Here are some pictures.. I was very pleased at the turnout (about 800), and I had some special guests join me this year:

My son and husband.

crabby son

son and nephew Simon

Tumor Girl

Finishing the walk!

Sunday, September 13, 2009

The Search is Over

I will henceforth not look for paying work again. This despite the fact my husband and I are both unemployed, with a child, and I have a chronic illness. It's a bad idea.

Today begins a new unhappy era. The only solution I can see to this current problem is that I teach my son and husband to live in shit, which I am able to do.

I'd like to help him but I can't. Due to circumstances beyond my control, I've been rendered useless. You can ask the experts, if you don't believe me.

Oh sure, there's government help. We should all use it and suck our pride up.

And the government just loves to provide quality, inexpensive healthcare too.

I'm so glad I've given up the stupid notion of working and ignored my instinct to try to help my family in its time of need.

Monday, September 7, 2009

Dear Brain

You have failed me for the last time. You fool me into thinking that you'll actually work for me, and then when I least expect it, you make me lose my way, babble like an idiot, and do random things...anything except what I'm supposed to be doing.

So okay you win. I will use you sparingly as thanks for your not completely leaving me. At one time you were able to get me through a 60 hour work week, help me maintain three part-time jobs, and earn the nickname "bulldog" from my co-workers. Remember that? I don't. Not anymore.

I appreciate anything you can give me, anytime you are willing to provide. I will try not to ask too much of you in the future.

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