Monday, September 18, 2006


"Careful, someone might say you're crotchety!", Jaci recently said in her hilarious sarcastic perfect way and we cracked up and I stopped my rant. Last night was the first Saturday night in a college town where if you're over thirty, you probably made a wrong turn somewhere or you need to move on or outward. From my open window I could hear laughter and parties in a 360 degree radius, to various volumes and wee hours. It makes me smile, honestly, because I remember scores of nights out with my girlfriends in college just like that. I live near a university (BU) and wouldn't expect or demand anything else, regardless of participation-- and I'm pretty sure I'm over it, sick or healthy. But on this occasion, I was cursing the stupid undergrads and their "gaity, jovialty, merriment" mostly to get a rise out of Jaci and my Mom, but also because I heard my own youth and naivete. My own assumption that everything was safe and ultiimately good. In its place, I now have apathy, or an acceptance that life is much more hard than soft. My former self would have called my current self weak, self-absorbed, and grossly pessimistic. Ha, my current self doesn't care what my former self thinks! Beautiful, yes?

It's certainly not just cancer, and a healable one at that. I should count my lucky stars that I am not in an Indian prison (read Shantaram, one the best books ever) or lacking in pleasant memories to relish and replay. And so, while I can extol my blessings and feel all the worse for their multitude in the face of my stubborn misery, I still never thought I'd be the "giving up" type. But I am. My dirtiest demons are dancing in my gut, whispering whispering whispering.

Ok, all you people that do believe in demons are freaking out right now, but don't. I'm just being dramatic.

So, guess I don't need to spell it out, but I have felt like CRAP for almost two weeks now. Take that word, CRAP, and spin it around, apply it, contort it; I mean it in every way. (You ungrateful pagan girl! You have everyone's love and support and your sister gave up everything for you and your Mom is there trying to make your room more hygienic and your boyfriend is willing to carry you so you can "hike" in st martin and kecia just had a party for you! what the hell?)

yes, all true. however, if I feel as I do this day or worse, as has been the case for too many inexplicable days, I plan to refuse chemo on wednesday whatever they say. not stop forever but i will not put more poison in me like this. this is not living. my mind and body are dying with all these pills and as i'm sure everyone agrees: death best is quick. torture under a fancy name and with big promises is not fooling me anymore.

hey, here's something juicy. in santa maria, behind our house on Blueridge Drive, I hear Unocal has been doing some overdue cleanup of Benzene. Benzene!! (google it- it's crazy carcinogenic in a world where we suppose cancer comes from magic). How Erin Brokovich is that? There's an 18-yr-old up the street who just got my exact form of leukemia (ALL) and rumors are swirling about other cases. I hope he's doing well and that he gets better. People with kids or who are younger need to fight. I dont know if he will ever really enjoy a carefree drunken college saturday night, but i hope so. i also hope for him to have the choice to have children. lastly, i hope that unocal buys him and his family a 20-million dollar ranch home with round-the-clock medical personnel in house, all the cars, boats, and other toys an 18-yr-old lusts after, and a perfect bone marrow donor so he can beat his disease long before he's legal to buy a beer.

one more complaint while i'm on my high horse and being crotchety-- i love that word! where does it come from?? gotta be the Brits. who's seen season 3 of Arrested Development, the best TV show ever?

Ahem, Please boycott, although if you haven't already bought it, you probablt won't, the book: The World is Flat by Thomas Friedman. I was a big Friedman fan in the past but he has turned into a typing mercenary sell-out and made millions from a simplistic, annoying, self-praising while tranparently self-effacing, six-grade-reader. His older stuff, history about the middle east told in a readable, detailed, balanced (i think, but what do i know) way is awesome. Pick up an old paperback of his From Beirut to Jerusalem or something and pls don't waste your money and time on this huge tome (i am listening to the audiobook and i have the hardcover- oops) that doesn't really tell you anythimg you didn't already know. Anyone else read this? Please share what you thought? i sort of feel like the insane hs history teacher that opines recklessly but cups his hand in his chin when the few students in the class who have done the reading offer opposing views. He gets a far away look in his eye and says, hmmm, yesss, that's very interesting Charles. Very interesting indeed. and maybe feels a little overly sheepish considering most of his flock are sleeping.


shannon said...

Wow, what an update that was! :) It made me smile, laugh, cry, and ache all at the same time. I'm so sorry for your bad days... and I can understand how you feel about all that chemo treatment. I was just talking to my roommate the other day about our "modern-day" cancer treatments. I use "modern-day" VERY loosely - I totally believe that in 4 to 5 decades (or less), our children will look back in horror on what we subjected our family and friends to in the name of 'health' and 'medicine.' It's awful! and it truly breaks my heart that you (and anyone else) has little other option but to go through that. But I trust that all the love and support surrounding you will continue to give you the ability to keep on keeping on. and I hope that good days, or maybe even just good moments, will at least balance out and help carry you through all the other times.
Anyway, as we say goodbye to the last official days of summer, I wish you a wonderfully warm and sunny week - in every way - and, as always, you and your lovely family will be in my thoughts.

shannon jerger

Alex said...

First of all, you have every right to be crochety and grumpy. Cancer sucks, doesn't it! Seriously, it's probably better to be grumpy first and laugh about it later than to smile about it first but end up grumpy =)

Second of all, BENZENE!?!?!? that makes me so angry - I just hate it when these companies are irresponsible. I really wonder how the first staff scientists or other university researchers were addressed when they first raised chemical toxicity questions to big bosses at companies like Unocal - "uh, yeah, toxic ... well it's not a problem right now so I'm not risking the status quo by dealing with it and changing things. Besides, I'll be retired in 2 years with my X-hundred million dollar retirement bonus, so I really don't care about that." Companies like that (i.e. big tobacco, big agribusiness, big fast food, big media) are parasitic; they exist to extract value by leeching off their customers rather than enriching their customers. By the time their customers are sick or dead, they'll have moved onto others. A mutually symbiotic relationship is just wayyyyy to forward thinking for them. But the parasites can't ever really flourish, because they don't create value in healthy ecosystems. At least people like the CEO of Walmart are finalllly starting to learn this kind of stuff. It sounds funny, but you should really read about what Walmart is trying to do. It's fascinating ... probably more fascinating than the Friedman stuff. I mean you can't swallow the hype until the rubber meets the road, but from what I've read they are really starting to move in the right direction and strategize on enriching communities and creating relationships with their stakeholders. And San Francisco now has a sustainable MBA program! So as disappointing as it is that the old guard is negligent and irresponsible, it's also good to be involved at the front lines as an agent of change ...

Anyhow I'm peeved about the Benzene thing and I'm bummed that you were possibly on the crappy end of the deal. You may not be as physically strong as you were before, but you still have your voice ... possibly your most powerful tool to effect change in this world. It's a wonderful voice - I love your writing and you still inspire me and many others no doubt. Even if Fletcher isn't ultimately your next stepping stone, I know that through this fog you will find your destination and you will continue to touch, enrich, and change the world around you for the better.

John said...

i'm new - to comment - but have read your blog over the past couple of months. my girlfriend is 23, and was also diagnosed with ALL in May of this year. she's now in israel going through various experimental cell therapies (though, i can't say she's doing well) as her bouts with chemo here in the US failed to yield the results they had hoped, and made her deathly sick.

it's hard for me to understand why i even post a comment, perhaps in the simplest sense that i "will" [you] hope, through the knowledge that you have many an anonymous supporter in this myriad world of cyberspace; that i hear your words from my gf, that i see your pain in her eyes, that i feel your courage in her voice, and that i wish you as much as i do her.

i hope that the recent period of "bad days" are washed away with future good ones, and that you know you are admired by myself and my gf (she told me awhile back, secretly she wished she could blog about her cancer as well as you did - though she blogs about other things wonderfully).

on a couple of other notes (a weak effort to bring perspective):

from the etymology dictionary, crotchety comes from the Old French word "crochet" - meaning "hook" or originally an architectural ornament of curled leaves.

i haven't read, From Beirut to Jerusalem, but you speak highly of it, so it's now on my list. have you read/heard anything about Journey of the Jihadist: Inside Muslim Militancy - Fawaz Gerges? i heard him speak on NPR and am now intrigued.

Kent said...

Erica and Jaci,

How is my favorite dynamic duo of super sisters?

First of all, thank you for the update. I am sorry to hear that the past few weeks have been tough ones. I can only hope that they, like other horrific occurrences we sometimes endure, will pass and serve as some benchmark in life as your darkest hours. It is your range of experiences and emotions that provide you depth; it is your capacity for empathy and perspective that makes you human. They say one judges the man by the quality of his demons…

As for me, I am doing well. I recently returned to the land of the rising sun. In some ways it felt like coming home. It is comfortable and familiar, but enough is new and different to keep it exciting. I start work on Monday and I am looking forward to jumping in. I had lunch with Chris today at Good Honest Grub and then later grabbed a beer at the Ebisu beer museum. It was good to see him and catch up.

Other than that, there is not much to tell. Joyce is well…I talk to her daily. I hope that all is well with you two. I hope to catch either of you online from time to time, but I know our schedules are a bit reversed.

I just wanted to let you know that there are many of out here reading. I think about you both daily. Take comfort and strength from the love of a sibling. I miss you both…and Lola too.