Monday, April 30, 2007

Updates on everything

Back in Vermont now. Got back last Monday, but I haven't been together enough to post anything.

My father's cancer is back. They're talking about enrolling him in various clinical trials, but after doing the research, I'm not hopeful. they're chemo drugs that have anything from a 6-15% response rate. If that were the grade one's kid got on a history test, one would be appalled. Given that I, myself, am participating in a phase 2 clinical trial, I would want a much better track record. The trial I'm participating in has a 70% response rate, so its at least a passing grade. If I'm going to spend this amount of time feeling like shit, I want some benefit from it.

If I were in my dad's shoes, I think I would be going straight to the palliative care and spend my time doing whatever made me feel better. Sometimes feeling better is enough.

My friend's father (the one who was just admitted to hospice) died. My friend has an uncomfortable relationship with her family and we've been each other's mutual support thru the parent-with-cancer thing. Lots of hugs to you, my friend. Sadly, lots of stupid family stuff has come out in the wake of his death with her family behaving badly toward her partner (and my sister-of-choice). More hugs in that direction.

I've been doing some heavy research into my own drug trials. It appears that what happened to me back in Feb was what is known as a cytokine storm. Fortunately for me, part of this protocol is an Agiotensin II Receptor Blocker (ARB) which moderates the positive feedback loop. It explains why the pneumonia crept up on me so damned fast. Curiously, the very fact that I have been so damned sick also helped, because the cytokine storm is potentially fatal in a vigorous immune system.

And finally I got my hair cut. I'll put a pic online once hubby brings home the camera. I went to a hair dressers with my hat and glasses and explained how they are a permanent fashion accessory. I told her I was tired of the aging hippy look, and I didn't want to go too short because I didn't want people speaking to me in hushed voices (well any more than they already are) asking "so is it cancer?". She did a really good job I must say. Its cute and fluffy under my hats and shakes out when I take them off.

Monday, April 16, 2007

Life and death

So I just came up for air after a 3 episode Six Foot Under mini marathon. I love that show. The soap opera set against the backdrop of the undertaker. Plus I'm reassured that other's share my interests since it had - what?- a six year run.

My dad is getting scanned to look for cancer this week and I should call him. A friend of mine's dad was just enrolled in hospice. Another friend's father-in-law died recently. I feel positively banal when I set my own stuff against that.

And yet...Although Lyme disease is not officially a fatal disease it does seem to shorten the life span. And it sure as hell does a number on quality of life. Rather than spending this shiny monday taking my kids out somewhere fun (they're on Spring Break), I spent it laying down in bed watching the aformentioned television show, 'cause I was just too damned tired to do anything else.

I just dragged my butt out of be a minute ago. My son is playing with his army guys on the table beside me right now and that's nice. This whole sunsensitivity thing completely blows because I can't even do the "Let's go to the park and I'll sit on the bench" thing

Friday, April 13, 2007

Hair again

Haven't done anything with my hair yet. I'm probably going to cut it off. My sister-in-law is a hair stylist, so I'm going to ask her for advice--perhaps allow my hair to resume its natural color for the first time in 20 or so years (for me natural is radical).

In other news--there's not much. I still feel tired and cruddy, perhaps slightly less cruddy than before. The chest pains came and go, but not so sharp as they were that one day. Perhaps because I know that they're nothing. Amazing how one's perception of pain changes when one realizes that its merely a false alarm.

I must say however, that its a good thing that I'm not particularly self concious about my looks. I get some interesting stares as I walk around swathed in cloth.

Friday, April 6, 2007

Headed out

I'm heading out to Michigan this week to stay with some friends and family. It will be a nice break for both myself and the kids.

Husband and I are playing with ideas about how to keep the day to day running of the house going while I feel cruddy. The hiring of a housekeeper will probably be part of this and it looks like my mother will come out for a while. I sent an email to my kid's school just to give them a heads up about why things might be a little chaotic lately. I'd hate to have them think I suddenly got myself a drinking problem or something.

I had an appointment with DR the other day. He's very concerned about me it seems. We talked for a long time about how this protocol is going. I told him that anyone who's considering doing this needs to be the right combination of desperate and dedicated. I also made the observation that perhaps I was far sicker than anyone (including myself) had suspected. I think I have spent so long coping with this that I have raised coping to an art.

Thursday, April 5, 2007


Its bad when taking a shower seems like a lot of effort.

I'm sitting hear feeling like I have to save my energy. In an hour I have to pick up my daughter and drive her to her singing group. My hair is tangled and getting on my nerves, but the idea of actually doing something about it seems like it would just be a huge hassle.

Years ago it was very long and I cut it quite short because taking care of it while I was sick was too much. I'm considering it again. I'm not particularly vain and I hate getting my hair cut in general. I color it when the grey starts to show but otherwise I pin it back to keep it out of my way, but there's always something symbolic about big changes in hair.

Have to think on this and meanwhile I better do something about my hair before I go out in public.