the absurdity of two years of chemical toxification

I just read in Heather Havrilesky's latest Salon column that people who've been heavily drugged can't stop from blathering about it afterward. This was stated in reference to having had an epidural.

It's completely true and achingly astute.

How many times have I wondered how to explain to ppl that 2 1/2 years of chemotherapy isn't something that you put behind you, but is more like an unruly roommate that moved in and is immune to all forms of eviction, no matter how many notices you put up or the plethora of threatening letters your lawyer writes or the umpteen trips to your Member of Parliament you make to lobby for legislative change.

Chemotherapy has entered your life and opened up new forms of susceptibility and limitations that you never could have envisioned.

i'm stupid now

chemo brain may just get the best of me yet.

my conversational skills are for shit. the chances of me ever being a desirable social option for anyone under any circumstances is untenable.

lately I've been wondering who I would have been without being made a disabled freak before I had a chance to become something else. anything else of any note whatsoever.

i really think I would have been someone interesting and worth having around.

i really do.

giving testimony

I figure that most who would read this blog would consider me to be a whiner.

First of all, fuck them.
Second of all, I don't.

Give your testimony. Injustice is the real cancer. Restorative justice may not be the cure, but it helps to heal the deeply scarred and forgotten.

open letter to my father at christmas time

I recently had to debase myself and ask my father for a loan to pay for a Speech Language Pathologist. Despite my Canadian address, rehabilitation for cancer survivors is not paid for by the government. They'll be happy to save your body, but to hell with your life!!

(Someday I'll tell you about how my father's wife once told me that not only do I NOT deserve financial support for my disabilities, but that I should pay the government back for my cancer treatment. She wasn't even trying to insult me ... she actually believed this drivel.)

My father thinks that my reports about late effects are lies.
(umm, New England Journal of Medicine?)

Here's an email I'm working on to send him (if only ...):

(deleted ...)

And, scene!

on losing your dignity

So at the risk of geeking myself up, I recently became a huge fan of Battlestar Galactica (okay - I was a fan of the old show too).

Last episode, Colonel Tigh (the resident SOB) comes out with an spot on speech about the worst aspect of being 'played' - that being the loss of your dignity.

And I quote, (well, paraphrase): "The worst part of being played is losing your dignity. You wind up feeling too worthless to continue to suck in the oxygen that you're breathing. In time you start to love it [feeling worthless] - it's like a bottle that never runs dry."

This Cancer Survival has been a losing battle against regaining my dignity or any amount of social station in life that might not leave me feeling completely worthless most of the time. It often does feel similar to the force that addiction has over the psyche. I don't believe that it is an addiction though. "I'm worthless" is just what you have to tell yourself in order not to completely crack up in the face of being treated as though you're dispensable by your own famiy. I can more easily do something about my being worthless than I can about the rest of the world being self-centered assholes - at least that's what you keep telling yourself.

It's an illusion of course. There's nothing to be done about either. And I'm not actually worthless, BTW.

What there is to do, is pretend that you're not broken as best you can. And bit by bit, you try to make sense of the crushing sense of hatred and rejection that you now have had the experience of sitting in. Try to keep it at bay as best you can - but that's an illusion too.

Fuck.

risk of suicide

The CBC posted an article today about the increased risk of suicide in cancer patients.

When I was 18 and about a year into treatment, my mother was using heavily and was ranting one (of many) nights. My dad just pretended to sleep through it and left me to deal with it. My sister was out. To make a long story short, continuing treatment at that point seemed kind of ridiculous.

late effects - the sharper side of the double edged sword

More commentary on the October 12, 2006 issue of the
New England Journal of Medicine. As I briefly mentioned in a previous post, this issue includes study results and commentary on the late effects of childhood cancer treatment.

This is the most comprehensive study complete thus far, with over 10000 cancer survivors included. It is heartening to finally see an admission in the medical community that life isn't always rosy for cancer survivors. I'll be most happy when it's aptly deemed completely inappropriate for health professionals (or anyone else) to tell survivors that 'they should be just grateful to be alive', when often what they've been given could not by normal standards be called 'a life'.

In the "Focus on Research" commentary, Dr. Philip M. Rosoff, MD notes that the evidence of the significance of these effects is "worrisome news." (Rosoff, 2006).

For childhood cancer survivors, it isn't news at all. I have been reporting my late effects to oncologists since 1990, and was routinely dismissed. The impact the cognitive "sequelae" has had on my life has been devastating. My family still treat me as 'the malingerer'- once you get a lable like that, which was slapped on me nearly two decades ago by the doctors who were supposed to be caring for me, they stick. Needless to say, our relationship is also devastating most of the time because they can't get past the guilt of their mistake - acknowledging that I was right all along would force them to face them to deal with it.

My problem is that in the grand scheme of 'late effects', on the available measurable tests I didn't fare too badly. On the surface, my physical appearance is fine (my thyroid and arthritis joints are another matter). However, I have to live with what you don't see and won't acknowledge because it's 'awkward' ... such as the reality of how ppl treat me once they figure out I'm a bit 'slow' and socially inept - after that, just call me a walking target. (BTW, on average I'd say it takes 1-3 conversations, only 1 if I'm in a group situation - then it's about 1-3 seconds).

After that, I'm forever deemed
1) the dummy ppl have around to make themselves feel smarter!
2) the loser ppl have around to make their slow social calendars seem fuller
3) the patsy you use when you need a stupid errand run that no one else will do.
4) the 'knob' who doesn't get any jokes. any.
5) the 'normal' looking cancer survivor whom oncologists can add to their ego bank.

What category of late effect would that fall under? Unfortunately, as comprehensive as the NEJM article is, there is no mention of the social fallout.

social capital

when you're chronically ill for 17 years, social capital becomes very scarce.

bodily breakdown

i was diagnosed in 1989.

in 1990 i started telling my oncologists about the late effects that were affecting me due to the chemotherapy.

they didn't listen. at all.

i wouldn't shut up about it. then, when i got depressed about being neglected and ignored by the very ppl who were responsible for my care, those very ppl started sending me to psychiatrists, who said that the issues i was having with my oncologists wasn't his 'department'.

what should he care? he wouldn't have had a patient to bill anymore if the social issues had been addressed. he couldn't have continued to pad the bank accounts of Big Pharma to ply me with those anti-depressants that f*&cked me up for years.

Guess what?
It wasn't all in my head - and the New England Journal of Medicine knows it too.