thisismydisease.com

…had the nerve, 2.5 years ago (but not seen in places i go), to issue “i’m sorry you have cancer” cards. last year, a gentleman wrote a book and included Hallmark’s blurb on why “I’m sorry you have cancer”.  just 6 or so months ago - just 6 months - one month after the review - the book came out in kindle.

to the guy who wrote the book “What Were They Thinking” (and you can either google him or pull him up on amazon, which has a great search engine): THANK YOU! nobody with cancer cares about those stupid cards - epecially those with Stage 4 cancer.

to the HALLMARK woman that wrote the cards: YOU IDIOT!!!!!!! tell HALLMARK, YOUR EMPLOYER, YOU HAVE MADE A HUGE MISTAKE!!!and get fired - which is what you deserve.

i don’t care about cards - especially those with no return address (which is ILLEGAL as of 11 september 2001). they got the card AND to break the law? anything that is hand-written with no return address goes in the trash. emails go in the trash - except if you’re a well-trusted friend, and then you might get a response in three or so weeks. send a note with the return address on it - and don’t send one of those “I’m sorry you have cancer”  HALLMARK cards.

i have to go to chemo now.

it’s been a barrel of monkeys here in the cancer den, let me tell you. if there was any more excitement around here i’d burst my seams and spew my toxic innards all over the floor. let’s see…

what’s happened…

ummm…

ummm…

ummm…

nothing.

not a bloody damned interesting thing.

it’s been quiet.

very, very quiet.

my isp finally agreed to let me send emails again (after multiple days of my begging and pleading and crying), despite what my web hosting company enabled (idiots).

work has been hectic, but quietly so. it’s the end of the summer and vacation time, after all.

i got my office almost completely rearranged and re-outfitted. just a few more things to go (like a whiteboard) and i’ll be able to call it good.

amber came by and cooked up a number of weeks’ worth of potstickers and sauces for veggies, rice and pasta.

the blog got picked up some place or other and is getting spammed to the tune of up to 20 per hour (which isn’t a lot - unless you consider i have to moderate each comment).

little dog, once again, proved he’s skilled above and beyond normal males and peed in the cupholder in my car (and i have to say, his aim is much better than any human male i know - he didn’t dribble so much as one drip, which is more than i can say about any of them).

the fungus under my finger nails has gone from being oozy and squishy to being solid and crunchy. it still smells like floppy eared dog ear, though.

dwight’s girlfriend arrived. she was prenamed “peanut” but she keeps telling me to call her “candy”. she also keeps mentioning that she’d like some friends - and keeps leaving me hints here and there.

the subtraction of two of the chemos left me with hands that are far less scaly and flaky - but are even more extremely sensitive to heat, cold, and (even) touch. they itch like hell and hurt even worse. and my fingernails are curving under - which wouldn’t be problematic if i could cut or trim the darned things. no can do. for things that have no pain receptors in them they surely do hurt when i try. if the emory board i purchased doesn’t work on them (and it might not, given how bloody strong they are) i might have to resort to sand paper.

thanks to facebook and the wonderful ms. stephanie green i “met” jessica queller, the author of this book. it arrived yesteday. i’ve got a date with it later this evening after a smoothie-based dinner and whatever else i can scare up that’s appealing. (i made a pot of homemade potato broccoli cheddar soup but i’m not in the mood for it now.)

my sil sent me a care package full of foods that don’t taste terrible to me (the lollipops, in fact, taste pretty good) and a book that was actually on my amazon wish list. i think she’s the first person to ever purchase anything from my wish list. (well, except for aw - but he purchased a book for me that i put on the list to purchase for him. like he couldn’t tell the difference.)

i made the mistake of putting some of the leftover (from many months ago) kraft singles on a bagel and putting it into the oven to bake. wow - i’d forgotten just how horrific that ends up. even little dog was confused by it. there something very wrong with a cheeze-food that does not melt but does bubble up and get brown and crusty.

one particularly rainy day this past week the golf course banned the cushmans (or is it cushmen - i know i keep asking but i don’t know the answer) from the grounds. surprisingly enough a good number of golfers came out despite this “inconvenience” and trudged through the rain and mud to play. now if they would only eschew the cushmans on other days and stop making nuisances of themselves. (i found another golf ball in the front yard the other day. that takes talent. or total lack thereof. it’s hard to say.)

a coyote walked past the living room window.

little dog peed on the floor. and my feet.

it was rainy and cold.

it was sunny and warm.

i slept.

i ate.

i hung out with friends.

i read.

i cried.

i laughed.

i just was.

just the way i like it.

it’s been quiet.

very, very quiet.

and now i’m going to sleep some more.

many of you are familiar with the daily coyote blog, right? well if you’re not you should be. read it. meet shreve. meet charlie. meet ely. meet cloe. there’s no such thing as a bad day if that day includes this cast of characters. anyway…

shreve’s grandma has a blog of her own. it’s here. she’s 90 and quite the storyteller. this is all new to her - but she’s gaining quite the audience. please visit and leave her nice comments.

it’s wonderful to see this new generation of bloggers joining all of us old timers.

when i first created this blog i created it with the premise of providing a sometimes humourous, sometimes raw, always real look into my life. well some things happened this weekend that, at this moment, are preventing me from sticking to that premise. i’m going to interrupt this blog one more time to address those things. then it’ll be back to the fun and games. onward we go.

now (and based on an article i read on saturday night)…

i have cancer. pick a stage or type - it doesn’t matter. anyway…i have cancer and am going through chemo. you and i are getting ready to go out to the store to buy whatever. it doesn’t matter. i’m tying my shoes. it takes me ten minutes to tie my shoes. it hurts to tie my shoes.

scenario 1: you think i’m overreacting and being lazy - and tell me to hurry up (and use that voice, that tone, to say those words).

i am not overreacting. i am not being lazy. it hurts. and i’m doing the best i can. it takes me ten minutes, so you’re just going to have to wait because your standing there telling me to hurry up in that voice, that tone of yours is only going to make what’s already a bad situation even worse. don’t tell me i’m overreacting or being lazy because i’m not. and don’t tell me it doesn’t hurt because it does.

scenario 2: you jump in. “here let me do this for you” - and fawn all over me - and smother me - then get your feelings hurt when i say “no” and push you away.

this is mine to deal with. if i want your help i’ll ask. right now what i need is to do it myself. and it hurts. and it takes ten minutes.

scenario #3: you do something to amuse yourself with while i tie my shoes.

scenario #4: you can’t wait so you go on without me.

two of the four scenarios above are appropriate responses. two are not.

my world today is not “normal” by your standards, but it is “normal” by mine. you know that microwave dinner that’s “7 minutes from freezer to plate”? it takes me a good hour to get the same microwave dinner from the freezer to the plate. i don’t move quickly these days. i move at a pace i’m happy with and comfortable with. it’s my new routine and your trying to alter this routine is only going to result in my disliking you - but more so, feeling horrible about myself because i can’t live up to your standards right now (and, probably, never will be able to again). and if i feel horrible about myself there’s no reason for me to continue this fight.

does this make sense?

cancer is not a team sport.

cancer is the patient dealing with what (s)he needs to deal with on her/his own terms. if the patient wants help (s)he will ask for it. but it is hers/his to deal with. be kind, be a friend, be supportive by letting the patient deal and feel good about her/himself. don’t take away her/his self esteem.

the day after my diagnosis the hospital’s head of occupational therapy dropped by for a visit. she was a young woman - early 30s maybe - and one hell of a blunt talker.

“you hear those people who say ‘i survived stage 4 cancer’? that’s bullshit. nobody ’survives’ stage 4 cancer. to ’survive’ means to be cured - and there is no cure for cancer that advanced. what there are, though, are ways and means for people with stage 4 cancer to get well and go on living life with a good quality of life. and do so for quite a long time.”

when she said those words to me i laughed out loud because of her honesty, her candor, and the pissed-off tone of her voice. she then went on to talk about those eternally teary-eyed women dressed head-to-toe in susan koman gear (”walking fucking billboards for the brand they’ve made that woman’s name into”) that the media likes to spotlight - but we won’t go there because it would surely offend most people because most won’t get the context.*

she also said this - and this is something you really need to pay attention to:

“yeah, those people who walk around saying ‘i survived cancer’ when what they did was survive living some part of life with someone who had cancer? liars. the only way someone survives cancer is to get cancer, get treated for it and survive it.”

does this make sense?

cancer is not a team sport.

of all the words i’ve read, all the word i’ve heard, though, i think what my friend mary wrote is the best. i’ve pulled this from the comments section of one of my posts:

“I guess the reason I keep reading your blog is that after all these YEARS I can finally read what I’ve been living! At times I think that I am a walking version of (insert name/relationship)’s worst nightmare. Thus when they see me they worship/despise, love/hate, admire/admonish me. The phrase that literally stabs my heart is the one, “we are going to BEAT this thing.” Well, boys and girls, what if I don’t, am I a failure?

“It is like having your entire house burn down to the ground. I don’t think people could imagine rebuilding the same house in the same spot and then resume normal living as if nothing had ever happened. No, being diagnosed with a “terminal”l illness (i.e. stage 4 cancer) leaves the past in ashes. I now have the chance to re-determine how/where/why I want to live. I’d appreciate all the love and support I can get, but this isn’t a team effort….WE can not BEAT this thing. WE, however, can continue to live each and every day, happy/sad, content/angry, giving/selfish….. But from this point on, I am a different person, living in a different house and enjoying a much different view of the world outside and inside me.”

i’d like to end this post with something appropriate, something profound, something that ties everything together into a neat little package and drives everything home. i don’t know what that something is, though. so, instead, i’ll end with this:

this is my disease. i’m comfortable with it. i accept it. i’m angry, sure, of course i am - but that anger is only going to help my fight. and i am fighting. but i need to fight in my own way. i am not you - and “normal” to me is not “normal” to you. don’t expect it to be. i have self-esteem. i need to keep that self-esteem up at a decently high level. i cannot be made to feel i’m letting you down by not living up to your expectations of what i should be right now. without that “fight”, without that self esteem, i’m dead today, not tomorrow - and i’m not ready yet.

do not love me to death.

and now, back to the fun and games.

*please don’t get me wrong. i have nothing but the greatest admiration and respect for susan koman. she was one excellent lady with a good heart - and i wish her nothing but the greatest possible in the next “this life”. what i have no respect for - disdain and hatred for, in fact - is how the media has taken her name and capitalised on it. and how corporations are using her name to pimp their shit. “a portion of the sale of this product goes to the susan koman cancer foundation.” sure. how much. a pink stand mixer? what portion of the sale of that $300+ product went to the foundation? or the pink blender? or the susan koman branded box of kraft dinner? christ you would think with all the pink crap that’s sold in this year alone there would have been enough donations made to the foundation to find ten cures for ten different types of cancer. have any cures been found? nope. why? because only a fucking penny of the sale of that kraft dinner went to the foundation. and only four cents from the sale of that blender went. and only $3 of the sale of that mixer went. as for the teary-eyed women clad head to toe in koman-wear…no comment. all i can say is if you’re so brand driven as to let your body be a billboard - and get in front of the camera dressed in that billboard - you won’t get my words anyway. so i’ll shut up now.

It was a very dairy day here yesterday. From my morning (or in yesterday’s case, afternoon - I slept in) glass of milk to fettuccine alfredo to a muffin with butter to yogurt to pudding there has been dairy in everything I consumed yesterday. This is rare. Normally I drink milk and, maybe, eat some cheese. That’s it, though.

Friday it was citrus.

Yesterday it was dairy.

What’s today going to bring? Vegetables? Fruits?? Plastic wrapped cheese products???

Hmmmm…

Had a nice talk with my mother yesterday. It was a tough week. ‘Lots of appointments. ‘Lots of work to attend to. But that’s fine.  I can deal with that - and actually enjoy the challenges of work and my projects. The toughness came in when the pressure of  “I care” came slamming down on me and making me feel guilty for choosing to rest instead of returning the kazillion phone calls I need to return - or getting a better start on those 30+ emails I owe people. It’s not that “I care” doesn’t mean anything to me. It does - a lot more than I could ever articulate. So keep caring. Please. But understand I have to take care of me - and sometimes taking care of me means doing something that makes me happy at the moment - even if that something is nothing more than sitting still and watching bad TV shows on Hulu. And if I don’t take care for me now there won’t be a me for you to say “I care” to later.

So many of the people I owe calls and emails to have been overwhelming understanding - and I’m grateful for you and love you for understanding. So many others, though, seem downright pissed that I’m not responding and are even accusing me of “running away” or “avoiding”. That’s not the case. I’m doing neither. So to those others, let me give you a challenge: Place your feet in a boiling vat of water- then try to walk ten steps from the kitchen to the office. Place your hands in a boiling vat of water - then try to open a door. Pump yourself full of biohazardous materials and try to continue on with your average day to day. And have somebody inject you with cancer cells in multiple areas of your body. ‘Not very “normal” is it?

Well, it is to me these days.

So here’s the truth: I’m not running away or avoiding. In fact, I’m dealing. I’m not shirking responsibilities. Sometimes, though, I have to make choices that aren’t going to be very popular - and although I’m sorry, that’s not going to change any time soon.

Back to the conversation with my mum: We talked about this weight I’m feeling - and she was extremely supportive and understanding. She knows how I am - always feeling guilty for not being what others expect me to be for them - but she also knows that now is not the time for me to be playing that game I never should have played to begin with.

It was a good conversation.

More often than not, mum and I don’t see eye to eye. When we do, though, it’s a good feeling. Maybe I’m not so odd after all. And maybe she’s not either.

It’s early sunday morning now. Since I slept in I’m not feeling sleepy at all. Maybe I’ll treat myself to some quality reading time. I’ve got this book I’ve been wanting to sit back and delve into. Maybe now’s the time.

Randy Pausch died today.

For those of you who managed to keep yourselves under rocks for the past number of months, Randy was a Comp Sci professor at Carnegie Mellon University in Pittsburgh, PA and the creator of an innovative and free computer programming program for children called Alice. In September, 2006 he learned that he had pancreatic cancer. Rather than attempt to re-cap almost two years worth of history, let me just provide you with the pertinent links. Now would be a really nice time for you under-rock dwellers to crawl out and pay attention.

The Last Lecture: Carnegie Mellon has a series called “The Last Lecture” in which all retiring professors stand up in front of their students and colleagues and impart those last “words of wisdom” which, usually, have to do with their own “hot world issues”. This was not so much the case with Randy. Instead, he used his “last lecture” time to vocalise the need to help children realise their respective and collective dreams. Instead of sitting yourself down tonight in front of yet another pedantic, brain-numbing, big YAWN slasher/zombie/SHTF movie, go here and watch - and learn something.

Randy’s obituary (or should I say tribute to his life - that would be more appropriate), as published by the NY Times, is here.

I first watched Randy’s “The Last Lecture” a month before my diagnosis. I watched it twice in one day, in fact - once alone and once with AW (whose idea of death = “good - now I get my inheritance”). I never realised then just how much that simple video would mean to me now.

Randy, I’m not one for articulating my wishes for people for pleasant, painless journeys into the next “this life” - but I’ll make that exception for you. You were a true leader in the field of education and getting the necessary tools to facilitate education into the hands of children and their teachers free of charge. You were an inspiration to your students, your colleagues and so many more people than you would ever imagine (given your demeanour). But even more than those things, you were a good person - which is what counts when the clock in this “this life” stops. May your trip to the next “this life” be no less than fantastic - and may you land gently and happily in a place befitting the greatness of you.

UPDATE: It’s rare that people who impact my personal life cross over with the people that impact my professional life. Randy is one of those people, apparently. His death and life are being discussed at length on my work mailing lists, as well as among a segment of my “virtual family”. It’s quite incredible to see how someone so “out of the spotlight” until nearing the end was able to reach so many diverse people so quickly.