OK this blog was my first ever attempt at blogging...
Not the best subject matter in the world, but I think I have stayed pretty true to giving you a clear and truthful look on what it's like to be suddenly diagnosed with rectal cancer and what it's like to live that journey...
I wanted to be able to be a resource for the next person who unfortunately has to deal with that. You only get a very small slice of the view from the Dr's, nurses, books, and such...very different to hear what it's actually like to live through it daily. And as you can gather not a whole lot of fun!
Which brings me to balance...if I thought about this 24/7 (which truly I almost do...given the circumstances you just can't help it) it would drive me insane, and sometimes although I still want to provide an accurate picture, even I get bummed out about writing yet another sad ass story about meds, pain and sadness..
So to counteract that, and to keep the part of my essence that still burns brightly I have started another blog to write about things I love, music, food and whatever else catches my fancy.
Here's the link...because even you dear reader need a break about this time I suspect.
It's entitled rock food love
Right now, you can learn how to make the perfect party dip, hear about my first hand account of being at the infamous Cincinnati Who concert and see how amazing my daughter is...
And to show you not all about my cancer journey is debbie downersville here's a fabulous tip or two I learned so far:
"Udder Budder"...
So coined by my diva friend Cynthia, "my-go-to-girl" for all things to make me look and feel fabulous...she coined it after I was telling her Kevin was calling it "Udder Butter". The actual product in question is "Udderly Smooth" moisturizing cream...but please just because they use it on cows, don't let that deter you from trying this stuff because it is AMAZING!
I had to get it because the hand-and-foot syndrome demands I slather on moisturizer pretty much every hour on the hour. Anything else I was using just disappeared into my skin after like 5 minutes like I had put nothing on at all.
Seriously you have to try this stuff. Smells pleasant. Like lotion, no exotic floral or herb fragrance but not enough to clash with anything else you'd be wearing. Put this stuff on your feet, throw a pair of cozy socks on for the night and I guarantee you will wow them next time you go for a pedicure. Really it's that good!
"Natural Hair Conditioner"
Yep it's called not washing your hair every day...seriously before this whole journey started I was the girl who took a shower and washed my hair every single day without fail and maybe two if I got all sweaty from rocking out or being out in the sun. Now (and please don't be grossed out, Kevin and Em swear I don't smell...and I don't want to ruin the fantasy if they are just saying that to be nice)
At first it made me feel gross, but honestly since I don't move around and sweat that much it's not been too bad. So right now I take a shower a week dictated by the hand and foot thing again, because it makes that go crazy if I get them in hot water...so believe it or not letting my hair go, instead of being awful, has actually done wonders for my hair...I brush it once or twice a day to distribute the natural oils and I haven't even had to use conditioner. I'm not advocating going a week, but if you are an every day shampooer...just try skipping a day or two and see what it does for your hair. A nice little head massage can further help distribute the natural oil as well. And if it makes you feel too uncomfortable there are now some great dry shampoos out there that work oh so much better than Pssst! (extra brownie points to the folks that remember what that product was!)
Vitamin D3
Simply if you are not taking it you should. Pretty much everyone in North America is deficient in this vitamin. Blame our current necessary obsession with sunscreen and vampires. Seriously it's a tough one to get because you either have to get it from direct sunlight without sunscreen or milk. And most adults don't drink enough milk to get it. I've been taking it and it has done wonders for my S.A.D (seasonal affective disorder) it also has the extra added benefit of cutting your chances of contracting colorectal cancer in half!! Also research has shown it's beneficial for helping to prevent other cancers as well. And if you are reading this blog I certainly hope by now you can see what an awful thing it is to have to go through...
So do it, do it tomorrow. And no worries they are teeny tiny pills, and you only need one a day.
So hopefully this post brought things a little bit more into balance for you, I know it did for me...
Still rocking it!
Saturday, December 11, 2010
Wednesday, December 8, 2010
"Follow the Yellow Brick Road"....
Two famous quotes both attributed to Dorothy, one of the most confused heroines from one of the best, and my most favorite movie of all time, the Wizard of Oz:
"Toto, I have a feeling we're not in Kansas anymore" and "There's no place like home"
These two quotes have taken on a whole new meaning for me lately...
Because in no way shape or form do I recognize where I am right now and literally there is no place like home because I can't leave my bed...
I'm on a journey and in a place so alien to me that I literally do feel like a tornado has lifted up and set me down in some place where nothing looks like it normally does, the witches(Dr's) and unrecognizable short people(Emma and friends)abound, and inanimate objects and animals talk with regularity (thanks to the lovely hallucinations compliments of my pharmacy)and holy crap there has to be a way out of this place!!! Right?
I have yet to exactly find my yellow brick road though, because the only one I've seen that even vaguely looks like it has the power to get me out of here is more comprised of minutes that drag by like months (YEARS!!), wakeupeattakemedicine-wakeupeattakemedicine, patience, patience, PATIENCE!!!!! and tiny painful steps on bricks (hardwood floors) that feel like craggy mountain stones on blistered feet and runs solely from my bed to my bathroom. Right now I have a hard time imagining that this 12 foot piece of road I travel back and forth about 6 times a day is going to get me out of this strange country.
Not only do I not recognize my environment, I don't recognize myself...
I don't recognize my appearance: dry cracking skin and straggly greasy hair, wrinkles that have showed up overnight, a body only able to get in the shower once a week, less than shining smile because a toothbrush seems too heavy to pick up, a body that looks like nothing it did 4 months ago including scary scars and stuff hanging off of me, purplish circles under my eyes and brown spots on my skin that seem to have showed up overnight from god knows where, swollen and red hands and feet.
I don't recognize my actions: crying at weird and inappropriate times, laying in bed all day everyday not being able to do anything I enjoy, watching bad TV, not being able to walk, things that used to take me seconds or minutes taking 10 times longer, clumsiness that results in a major spill or cleanup at least 2-3 times a day,having to type something 6 or 12 times over because I couldn't remember a string of 3 numbers, wearing the same clothes for a week straight, having no idea what day it is or if it's a sunny or cloudy day, except for what the sliver behind my curtain tells me. Mail arrives , I don't care, bills pile up, I don't care...I mean I'll get to it eventually...WAIT...SEE??? That is a statement that prior to this I would have never said in a million years....
I don't recognize my future, because now having gone through what I have, I don't have any idea what it will look at all, I know I'll have to be constantly on guard against this coming back..And I'm not sure I want to go back to where I was...because I think where I was has contributed to where I am now... I don't want to go back to doing too much, with folks that aren't on the same page, dealing with people who don't pull they're own weight, causing me to take on way more than any normal person should. Even though I've always realized life is short, I've found it's way too short to compromise any longer on what my real dreams are. And I have resolved to be done once and for all with all the things that were holding me back or in place, including myself.
And now "I don't think there's anything in that bag for me" as Dorothy says to the Wizard after he's handed out his version of a heart, a brain and courage to her best friends... I already have those as do all my friends, in spades, although since this happened it's hard to remember that, or not feel like the hugest burden in the world.
And I know it's not going to be a quick fix...
As long as this process has taken so far...I think it's going to be a while until I understand it all and what my future will look like.
But I continue to persevere, aided by friends who continue to remind me this isn't forever and I continue to have hope that all shall be well when I finally wake up from this bad, bad dream.
And although the wizard didn't pull it out of the bag, there actually was something in there for me, or at least something that I've taken over the years on my own, that gives me great comfort...
"A heart is not judged by how much you love; but by how much you are loved by others."
So I tell myself all shall be well, because I at least still recognize that...
"Toto, I have a feeling we're not in Kansas anymore" and "There's no place like home"
These two quotes have taken on a whole new meaning for me lately...
Because in no way shape or form do I recognize where I am right now and literally there is no place like home because I can't leave my bed...
I'm on a journey and in a place so alien to me that I literally do feel like a tornado has lifted up and set me down in some place where nothing looks like it normally does, the witches(Dr's) and unrecognizable short people(Emma and friends)abound, and inanimate objects and animals talk with regularity (thanks to the lovely hallucinations compliments of my pharmacy)and holy crap there has to be a way out of this place!!! Right?
I have yet to exactly find my yellow brick road though, because the only one I've seen that even vaguely looks like it has the power to get me out of here is more comprised of minutes that drag by like months (YEARS!!), wakeupeattakemedicine-wakeupeattakemedicine, patience, patience, PATIENCE!!!!! and tiny painful steps on bricks (hardwood floors) that feel like craggy mountain stones on blistered feet and runs solely from my bed to my bathroom. Right now I have a hard time imagining that this 12 foot piece of road I travel back and forth about 6 times a day is going to get me out of this strange country.
Not only do I not recognize my environment, I don't recognize myself...
I don't recognize my appearance: dry cracking skin and straggly greasy hair, wrinkles that have showed up overnight, a body only able to get in the shower once a week, less than shining smile because a toothbrush seems too heavy to pick up, a body that looks like nothing it did 4 months ago including scary scars and stuff hanging off of me, purplish circles under my eyes and brown spots on my skin that seem to have showed up overnight from god knows where, swollen and red hands and feet.
I don't recognize my actions: crying at weird and inappropriate times, laying in bed all day everyday not being able to do anything I enjoy, watching bad TV, not being able to walk, things that used to take me seconds or minutes taking 10 times longer, clumsiness that results in a major spill or cleanup at least 2-3 times a day,having to type something 6 or 12 times over because I couldn't remember a string of 3 numbers, wearing the same clothes for a week straight, having no idea what day it is or if it's a sunny or cloudy day, except for what the sliver behind my curtain tells me. Mail arrives , I don't care, bills pile up, I don't care...I mean I'll get to it eventually...WAIT...SEE??? That is a statement that prior to this I would have never said in a million years....
I don't recognize my future, because now having gone through what I have, I don't have any idea what it will look at all, I know I'll have to be constantly on guard against this coming back..And I'm not sure I want to go back to where I was...because I think where I was has contributed to where I am now... I don't want to go back to doing too much, with folks that aren't on the same page, dealing with people who don't pull they're own weight, causing me to take on way more than any normal person should. Even though I've always realized life is short, I've found it's way too short to compromise any longer on what my real dreams are. And I have resolved to be done once and for all with all the things that were holding me back or in place, including myself.
And now "I don't think there's anything in that bag for me" as Dorothy says to the Wizard after he's handed out his version of a heart, a brain and courage to her best friends... I already have those as do all my friends, in spades, although since this happened it's hard to remember that, or not feel like the hugest burden in the world.
And I know it's not going to be a quick fix...
As long as this process has taken so far...I think it's going to be a while until I understand it all and what my future will look like.
But I continue to persevere, aided by friends who continue to remind me this isn't forever and I continue to have hope that all shall be well when I finally wake up from this bad, bad dream.
And although the wizard didn't pull it out of the bag, there actually was something in there for me, or at least something that I've taken over the years on my own, that gives me great comfort...
"A heart is not judged by how much you love; but by how much you are loved by others."
So I tell myself all shall be well, because I at least still recognize that...
Friday, November 19, 2010
"Walk on by..." Bacharach + David
Um, yeah...I would if I could.
OK so now we're in Chunk three. the final in this arduous journey.
It's all chemo all the time. Well, twice a day anyway. I do it for 2 weeks than I am off for a week. That compromises one round.
So now? I am almost done with my second round. Luckily I'll have the week of Thanksgiving off from taking meds. and on Sunday I take the last pills in round two.
So yeah, 2 down.............7 to go.
*sigh*
Let's talk side effects shall we? So beyond the extreme fatigue (de riguer by now, like some annoying person who bores me but refuses to go home) and the stomach searing "I just got the inside of my stomach scratched by glass and someone is pouring acid in it" pain that shows up after I eat and sticks around for 5-6 hours...I now have a new visitor.
Hand and Foot syndrome, yeah walk on by you miserable little fuck...
And I can't walk away from it because now ladies and gentleman, I can't walk.
It did get better last time when I was on my med free week, I can only hope it will this time too.
Thanks to the chemo the bottom of my feet are basically nothing but one huge painful blister...when I called the Dr. to check on this and see if there was something I needed to know or do, I was advised the following:
"Well if it hurts, stop walking..."
(Um, areyouseriousyougottobekiddingme...?)
I have to go to the bathroom like 10 times a day not to mention I can't take my chemo without eating, and I can't eat without going to the grocery store..(at this point I started to scream a little in my head...)
"It was just starting last round, and it's so bad this time, does this mean it could get worse than this?"
"Oh yes"
"So what do I do if it does?"
"Oh don't worry, we'll just get you a wheelchair and if we need to one of those little portable commodes to put next to the bed"
And she wasn't kidding.
OK, that's it I've had it.
I want to walk away from all of this...ALL OF IT.
But I can't.
If you need me I'll be huddled under my covers in wretched existence mode...
Oh and yeah if I don't talk to you in the mean time?
Happy Thanksgiving.
It will be a bit of a stretch for me this year....
OK so now we're in Chunk three. the final in this arduous journey.
It's all chemo all the time. Well, twice a day anyway. I do it for 2 weeks than I am off for a week. That compromises one round.
So now? I am almost done with my second round. Luckily I'll have the week of Thanksgiving off from taking meds. and on Sunday I take the last pills in round two.
So yeah, 2 down.............7 to go.
*sigh*
Let's talk side effects shall we? So beyond the extreme fatigue (de riguer by now, like some annoying person who bores me but refuses to go home) and the stomach searing "I just got the inside of my stomach scratched by glass and someone is pouring acid in it" pain that shows up after I eat and sticks around for 5-6 hours...I now have a new visitor.
Hand and Foot syndrome, yeah walk on by you miserable little fuck...
And I can't walk away from it because now ladies and gentleman, I can't walk.
It did get better last time when I was on my med free week, I can only hope it will this time too.
Thanks to the chemo the bottom of my feet are basically nothing but one huge painful blister...when I called the Dr. to check on this and see if there was something I needed to know or do, I was advised the following:
"Well if it hurts, stop walking..."
(Um, areyouseriousyougottobekiddingme...?)
I have to go to the bathroom like 10 times a day not to mention I can't take my chemo without eating, and I can't eat without going to the grocery store..(at this point I started to scream a little in my head...)
"It was just starting last round, and it's so bad this time, does this mean it could get worse than this?"
"Oh yes"
"So what do I do if it does?"
"Oh don't worry, we'll just get you a wheelchair and if we need to one of those little portable commodes to put next to the bed"
And she wasn't kidding.
OK, that's it I've had it.
I want to walk away from all of this...ALL OF IT.
But I can't.
If you need me I'll be huddled under my covers in wretched existence mode...
Oh and yeah if I don't talk to you in the mean time?
Happy Thanksgiving.
It will be a bit of a stretch for me this year....
Friday, October 29, 2010
"Run like Hell..." - Pink Floyd
Or confront?
Halloween, the perfect time to confront our fears...
An old tradition of dragging the scary into the light. Dissect it and hopefully break it down, so instead of the horror, you see the fluff or ash it inevitably turns out to be sprinkled to disappear into the light...triumphant and feeling invincible at least once a year.
As a matter of course I don't call down the negative...it's not that I'm not aware but I don't want to give bad things any energy. You focus on it and it grows, takes on a life of it's own. Becomes the disaster you seek to avoid. But when it's forced in front of you...you look.
Like Halloween it regularly surfaces, whether you want it to or not...vampires, mummies, the Blob, Frankenstein, Monsters of the most hideous sort. Chasing you, draining you of blood, trying to kill you, absorb you, poison you, refusing to let you go, making your heart stop. And beyond that there are the Zombies...those who live through the ultimate of horrors. To not really live at all...
So for one night, one night only I drag it into the light, take off the mask, unwrap the bandages, and in the practical world, look in the mirror, look at my body, gauge my energy or lack there of...look at the pale, the tired, the sad, the lonely and the useless, feel the scream that keeps threatening and feel the chemicals that threaten to embalm.
And then I light a candle, cast it all into the dead rustling leaves to be skittered away down the street with a sudden whirl of wind, say a few words of incantation and send it far away into the night. I'll focus not.
I'll re-assess next year.
Halloween, the perfect time to confront our fears...
An old tradition of dragging the scary into the light. Dissect it and hopefully break it down, so instead of the horror, you see the fluff or ash it inevitably turns out to be sprinkled to disappear into the light...triumphant and feeling invincible at least once a year.
As a matter of course I don't call down the negative...it's not that I'm not aware but I don't want to give bad things any energy. You focus on it and it grows, takes on a life of it's own. Becomes the disaster you seek to avoid. But when it's forced in front of you...you look.
Like Halloween it regularly surfaces, whether you want it to or not...vampires, mummies, the Blob, Frankenstein, Monsters of the most hideous sort. Chasing you, draining you of blood, trying to kill you, absorb you, poison you, refusing to let you go, making your heart stop. And beyond that there are the Zombies...those who live through the ultimate of horrors. To not really live at all...
So for one night, one night only I drag it into the light, take off the mask, unwrap the bandages, and in the practical world, look in the mirror, look at my body, gauge my energy or lack there of...look at the pale, the tired, the sad, the lonely and the useless, feel the scream that keeps threatening and feel the chemicals that threaten to embalm.
And then I light a candle, cast it all into the dead rustling leaves to be skittered away down the street with a sudden whirl of wind, say a few words of incantation and send it far away into the night. I'll focus not.
I'll re-assess next year.
Thursday, October 14, 2010
Here we go again...
Well...last chunk starts Monday. 2 down and 1 to go.
I'm a little down because I have not been feeling so great the last few weeks. The dehydration saga continues...the whole food, meds, water, salt, what I'm eating equation that regulates all that, I just have not been able to get a grip on.
On some days, out put is thick, others bag after bag of water and in between I just feel confused, weird, dehydrated and tired. Or as was the case this last week in some serious ass pain.
From what I can deduce if I eat something that disagrees with me or my bag anything raw, chunky, or spicy...I get the most delightful shooting, someone-is-jabbing-me-in-the-side-with-with-a-red-hot-poker feeling on the planet... for HOURS. And thanks to that I'm back to the "sleep two hours a night if I'm lucky world". And because I am not eating one single thing a a time, it's horrifically hard to find out exactly what was the problem food.
So...tired, not feeling good, cranky, uncomfortable, Energy ZERO.
NOT where I wanted to be when starting this VERY VERY long next chunk.
I'm worried.
Because the main side effect of the chemo is diarrhea...which just complicates things further.
Plus although this is my VERY favorite time of the year, I need to bow out of a lot of social functions because if I get sick, they'll delay my chemo, and if it delays past a certain point they won't give it to me and I need to finish the full course of this thing.
Add in some SAD (seasonal affective disorder)which I am prone to and I see a very bleak winter ahead. ( and no for the 56th time I do not want to go on antidepressants thank you very much...cripes the Dr's push that shit like candy!)
And top it off with Dr. Bitchslap (you know the surgeon I love to hate) totally bitching me out when she found out the Oncologist OK'd me to take the pill. Exclaiming " Are you kidding me?? I've never even heard of that..does your oncologist even know you have an illeostomy?? (duh..yes he does) How will we know you can even absorb it?? You might as well take nothing at all"
This woman is SERIOUSLY on my last nerve.
She declared she was going to call my oncologist and talk to him about it, I called him and he hadn't heard from her as of yet...)
BUT SERIOUSLY, why oh why did she find the need to say that to me???
That horrible statement that will now linger in my mind...making me doubt if my body is absorbing it, if it's doing any good.
And not being able to know until a few years from now if this thing resurfaces as it's 50% known to do...in the liver or the lungs no less...(although that's not what the plan is for me)
Mindset is EVERYTHING to someone fighting this stupid ass disease.
*sigh* *pounds head on table* *wishes for a drink* *craves a salad* *wishes I could be around my friends more, but strangely not...because I am SICK of talking about this shit, which unfortunately is the ONLY thing I have got going on right now* *cries....again*
Don't worry I am still rocking it...albeit in a slightly tired, confused, bleak kind of way. I'm scared and nervous. Feeling disassociated from everything and distant.
Sad and worried.
I told myself I'd be truthful in writing about this, so there you have it.
Come on Chunk Three.
Bring it.
Because I am all kinds of ready to be done with you.
I'm a little down because I have not been feeling so great the last few weeks. The dehydration saga continues...the whole food, meds, water, salt, what I'm eating equation that regulates all that, I just have not been able to get a grip on.
On some days, out put is thick, others bag after bag of water and in between I just feel confused, weird, dehydrated and tired. Or as was the case this last week in some serious ass pain.
From what I can deduce if I eat something that disagrees with me or my bag anything raw, chunky, or spicy...I get the most delightful shooting, someone-is-jabbing-me-in-the-side-with-with-a-red-hot-poker feeling on the planet... for HOURS. And thanks to that I'm back to the "sleep two hours a night if I'm lucky world". And because I am not eating one single thing a a time, it's horrifically hard to find out exactly what was the problem food.
So...tired, not feeling good, cranky, uncomfortable, Energy ZERO.
NOT where I wanted to be when starting this VERY VERY long next chunk.
I'm worried.
Because the main side effect of the chemo is diarrhea...which just complicates things further.
Plus although this is my VERY favorite time of the year, I need to bow out of a lot of social functions because if I get sick, they'll delay my chemo, and if it delays past a certain point they won't give it to me and I need to finish the full course of this thing.
Add in some SAD (seasonal affective disorder)which I am prone to and I see a very bleak winter ahead. ( and no for the 56th time I do not want to go on antidepressants thank you very much...cripes the Dr's push that shit like candy!)
And top it off with Dr. Bitchslap (you know the surgeon I love to hate) totally bitching me out when she found out the Oncologist OK'd me to take the pill. Exclaiming " Are you kidding me?? I've never even heard of that..does your oncologist even know you have an illeostomy?? (duh..yes he does) How will we know you can even absorb it?? You might as well take nothing at all"
This woman is SERIOUSLY on my last nerve.
She declared she was going to call my oncologist and talk to him about it, I called him and he hadn't heard from her as of yet...)
BUT SERIOUSLY, why oh why did she find the need to say that to me???
That horrible statement that will now linger in my mind...making me doubt if my body is absorbing it, if it's doing any good.
And not being able to know until a few years from now if this thing resurfaces as it's 50% known to do...in the liver or the lungs no less...(although that's not what the plan is for me)
Mindset is EVERYTHING to someone fighting this stupid ass disease.
*sigh* *pounds head on table* *wishes for a drink* *craves a salad* *wishes I could be around my friends more, but strangely not...because I am SICK of talking about this shit, which unfortunately is the ONLY thing I have got going on right now* *cries....again*
Don't worry I am still rocking it...albeit in a slightly tired, confused, bleak kind of way. I'm scared and nervous. Feeling disassociated from everything and distant.
Sad and worried.
I told myself I'd be truthful in writing about this, so there you have it.
Come on Chunk Three.
Bring it.
Because I am all kinds of ready to be done with you.
Tuesday, September 21, 2010
"Time heals the wounds that the world can't see..." - Todd Rundgren
Woah.
I'm back.
Sort of.
As you can see since I am typing this (and yes it's really me...) I made it through my rectal resection surgery on August 16th. Actually made it through with flying colors!! So yay! that. As you can also see I haven't been able to do an update because things got a little rough after that...
The start was beyond rocky since walking out the door that morning to go to the hospital was the scariest thing I have ever done. Only to find out after we arrived (at god-awful-7am o'clock...) that my surgery wasn't until later that afternoon, so me and the posse (Emma, Kevin, January, Jen, Jason and my Mom and Dad...) had to go BACK home and return again in a few hours. It was a double courage day.
And except for EXCRUCIATING (and I do mean EXCRUCIATING!!) lower back pain from a lower back spasm I got while they had me god-knows-how trussed up during surgery...and the weirdness of waking up in recovery all alone to full consciousness...with NO ONE there (I was yelling "hello?? hello? anyone???) from there on out it went pretty smoothly. the actual pain from the surgery was never more than akin to bad cramps...and a little ouchy when I tried to sit up or get out of bed.
I was a model patient (or at least tried to be...) and got up as SOON as I could and started walking, which I think greatly attributed to me getting out of there in just 4 days! So by that Friday I was home. (and thank goodness because YES hospital food is every bit as horrible as people have said...)
And word has it I was VASTLY entertaining on pain meds...supposedly I would just nod off while having a conversation, then wake up and look for an answer to the question I'd just asked, even though I'd fallen asleep and been out of it for an hour or so...very weird. But glad to provide a little entertainment to my beautiful friends who so patiently and beautifully stayed with me. And ask Anne sometime about the movie we watched 4 times, which I kept requesting which I STILL cannot remember the name to..(I know Sandra Bullock was in it and it had something to do with football..) it's a very entertaining story
So that Friday I was released I walked a mile in the hospital that day alone, I was feeling pretty good!! So good in fact I went home and went out that evening. Walked up to the Northside tavern and had a coke...I even went out that Saturday night to a street fair in Ludlow Ky to see a friend of mine play.
And then the fluids ran out!
Obviously they had been keeping me well hydrated in the hospital through the IV's...but once I got home, now that I am officially a temporary "Ostamate" (sounds like some weird Australian bird doesn't it?...)I starting dehydrating very quickly.
It wasn't that I wasn't drinking fluid (I was!! like gallons!!) it was that since they were bypassing my large colon, which is what absorbs all the liquid from what you eat and drink, water was passing through me like..well..water.
So weird juxtaposition...feeling great and healing from the surgery itself, but feeling like TOTAL crap because I was so dehydrated. And when I say total crap, I mean I hurt so bad my hair hurt...couldn't walk..couldn't sleep, my skin was hot. It was just plain awful and I was miserable.
So I just laid in bed, watching every movie known to mankind and read like 30 books, none of which registered because I felt so bad.
The highlight and ONLY physical action in a day was walking downstairs and getting something to drink and microwaving (if I could...) something to eat, with a lot of sitting down while I was doing it.
Well the situation got so bad I had to go back to the hospital a couple of times to get more IV fluids...so in between what I was eating and drinking, taking Lomotil to slow my digestion down and my body not responding it was a frustrating mix and crap shoot.
And not to even mention my illeostomy bag...really I can't talk about it because I hate it so much and it's so traumatic to change it I need a Valium just to think about it right now. Suffice to say, I hate the thing and will never be so happy in my life as when I get rid of it. Although I am grateful it's giving the area I was operated on a chance to heal but that is the ONLY good thing I have to say about it. well that...and the fact I don't smell...which was one of my major vanity concerns. Otherwise it burns, it's annoying, I have to empty it like 10 times a day and well I just hate it.
So the GOOD news is that there was NO cancer in my lymph nodes and my tumor had shrunk to .6 mm (which is about the size of a head of a pin...)So yay for positive thinking and energy!!
My other great hurdle was after the surgery results came back I needed to go back to the Oncologist and hear what was next in terms of follow up chemo. Another "I was pissed" situation because I was told several times that if the surgery was successful (which it was) that there was a chance I'd only have to do a few follow up months of chemo.
WRONG, NOPE. NADA. Fuck.
5 and a half more months...which since I was feeling so bad was NOT good news and the day I found out, being hooked up to IV's AGAIN I actually cried through two boxes of tissues because I was so upset at the news (although as January put it, if you're going to cry that much, much better to do it while you are getting IV fluids to replace the tears...so true)
So next step was to come to a decision of what kind of chemo and all the signs were pointing to the IV, get a port, have to go in every two weeks, lose your hair kind...which was NOT making me happy.
I had done hours of research reading clinical trials and comparing all the different kinds of chemo and the one he was originally thinking really only had about a 5% better response rate with TONS of cons I just did not want to deal with and I could not envision my self doing.
However when the DR. realized how much the Xeloda pill had shrunk the tumor pre surgery, he OK'd me to do just the pill alone for my follow up chemo.
Hallelujah!!! IT was the BEST NEWS EVER!!!! He wrote me a prescription for it on the spot, I start taking it October 18th and don't have to go back in for a follow up visit til November 1st. Chunk three here I come!
So now? Slowly getting better day by day...the dehydration issue seems to be getting better...I have about a strong 3 and half hour period at a time where I can be up and moving and doing things, and I even went to practice last night!
I'll be excited when I can drive again and can pick up something over 5 lbs (I miss you bass!!) However this is balanced out by still having periods of time where I can't get off the bed, but all in due time I guess.
So I am going to attempt playing Midpoint this weekend. We play Friday at 10:15 at the Inner Peace Holistic Center. Kevin in stepping in to play bass for me since I haven't been cleared to pick up heavy things yet. So it will be my own personal celebration of life and music. join us if you can I would love to see you! One of the hardest things is missing my social life.
I'm going to enjoy this small respite before chunk three comes barreling down.
It's good to be back. :-)
I'm back.
Sort of.
As you can see since I am typing this (and yes it's really me...) I made it through my rectal resection surgery on August 16th. Actually made it through with flying colors!! So yay! that. As you can also see I haven't been able to do an update because things got a little rough after that...
The start was beyond rocky since walking out the door that morning to go to the hospital was the scariest thing I have ever done. Only to find out after we arrived (at god-awful-7am o'clock...) that my surgery wasn't until later that afternoon, so me and the posse (Emma, Kevin, January, Jen, Jason and my Mom and Dad...) had to go BACK home and return again in a few hours. It was a double courage day.
And except for EXCRUCIATING (and I do mean EXCRUCIATING!!) lower back pain from a lower back spasm I got while they had me god-knows-how trussed up during surgery...and the weirdness of waking up in recovery all alone to full consciousness...with NO ONE there (I was yelling "hello?? hello? anyone???) from there on out it went pretty smoothly. the actual pain from the surgery was never more than akin to bad cramps...and a little ouchy when I tried to sit up or get out of bed.
I was a model patient (or at least tried to be...) and got up as SOON as I could and started walking, which I think greatly attributed to me getting out of there in just 4 days! So by that Friday I was home. (and thank goodness because YES hospital food is every bit as horrible as people have said...)
And word has it I was VASTLY entertaining on pain meds...supposedly I would just nod off while having a conversation, then wake up and look for an answer to the question I'd just asked, even though I'd fallen asleep and been out of it for an hour or so...very weird. But glad to provide a little entertainment to my beautiful friends who so patiently and beautifully stayed with me. And ask Anne sometime about the movie we watched 4 times, which I kept requesting which I STILL cannot remember the name to..(I know Sandra Bullock was in it and it had something to do with football..) it's a very entertaining story
So that Friday I was released I walked a mile in the hospital that day alone, I was feeling pretty good!! So good in fact I went home and went out that evening. Walked up to the Northside tavern and had a coke...I even went out that Saturday night to a street fair in Ludlow Ky to see a friend of mine play.
And then the fluids ran out!
Obviously they had been keeping me well hydrated in the hospital through the IV's...but once I got home, now that I am officially a temporary "Ostamate" (sounds like some weird Australian bird doesn't it?...)I starting dehydrating very quickly.
It wasn't that I wasn't drinking fluid (I was!! like gallons!!) it was that since they were bypassing my large colon, which is what absorbs all the liquid from what you eat and drink, water was passing through me like..well..water.
So weird juxtaposition...feeling great and healing from the surgery itself, but feeling like TOTAL crap because I was so dehydrated. And when I say total crap, I mean I hurt so bad my hair hurt...couldn't walk..couldn't sleep, my skin was hot. It was just plain awful and I was miserable.
So I just laid in bed, watching every movie known to mankind and read like 30 books, none of which registered because I felt so bad.
The highlight and ONLY physical action in a day was walking downstairs and getting something to drink and microwaving (if I could...) something to eat, with a lot of sitting down while I was doing it.
Well the situation got so bad I had to go back to the hospital a couple of times to get more IV fluids...so in between what I was eating and drinking, taking Lomotil to slow my digestion down and my body not responding it was a frustrating mix and crap shoot.
And not to even mention my illeostomy bag...really I can't talk about it because I hate it so much and it's so traumatic to change it I need a Valium just to think about it right now. Suffice to say, I hate the thing and will never be so happy in my life as when I get rid of it. Although I am grateful it's giving the area I was operated on a chance to heal but that is the ONLY good thing I have to say about it. well that...and the fact I don't smell...which was one of my major vanity concerns. Otherwise it burns, it's annoying, I have to empty it like 10 times a day and well I just hate it.
So the GOOD news is that there was NO cancer in my lymph nodes and my tumor had shrunk to .6 mm (which is about the size of a head of a pin...)So yay for positive thinking and energy!!
My other great hurdle was after the surgery results came back I needed to go back to the Oncologist and hear what was next in terms of follow up chemo. Another "I was pissed" situation because I was told several times that if the surgery was successful (which it was) that there was a chance I'd only have to do a few follow up months of chemo.
WRONG, NOPE. NADA. Fuck.
5 and a half more months...which since I was feeling so bad was NOT good news and the day I found out, being hooked up to IV's AGAIN I actually cried through two boxes of tissues because I was so upset at the news (although as January put it, if you're going to cry that much, much better to do it while you are getting IV fluids to replace the tears...so true)
So next step was to come to a decision of what kind of chemo and all the signs were pointing to the IV, get a port, have to go in every two weeks, lose your hair kind...which was NOT making me happy.
I had done hours of research reading clinical trials and comparing all the different kinds of chemo and the one he was originally thinking really only had about a 5% better response rate with TONS of cons I just did not want to deal with and I could not envision my self doing.
However when the DR. realized how much the Xeloda pill had shrunk the tumor pre surgery, he OK'd me to do just the pill alone for my follow up chemo.
Hallelujah!!! IT was the BEST NEWS EVER!!!! He wrote me a prescription for it on the spot, I start taking it October 18th and don't have to go back in for a follow up visit til November 1st. Chunk three here I come!
So now? Slowly getting better day by day...the dehydration issue seems to be getting better...I have about a strong 3 and half hour period at a time where I can be up and moving and doing things, and I even went to practice last night!
I'll be excited when I can drive again and can pick up something over 5 lbs (I miss you bass!!) However this is balanced out by still having periods of time where I can't get off the bed, but all in due time I guess.
So I am going to attempt playing Midpoint this weekend. We play Friday at 10:15 at the Inner Peace Holistic Center. Kevin in stepping in to play bass for me since I haven't been cleared to pick up heavy things yet. So it will be my own personal celebration of life and music. join us if you can I would love to see you! One of the hardest things is missing my social life.
I'm going to enjoy this small respite before chunk three comes barreling down.
It's good to be back. :-)
Sunday, August 15, 2010
"Calling all angels..." - Jane Siberry
I had just about the perfect weekend.
Which is awesome because tomorrow is Chunk Two of my journey. Surgery.
My Mom and Dad came all the way up from Texas to spend some time with me and our visit was just delightful! Friday evening we had a sunset supper at Joe's Crab Shack and it was delicious, if cracked crab legs dipped in melted butter isn't pretty close to nirvana...I don't know what is! Afterwards I got to spend some celebratory time with my friend Jill at her bachelorette party...all my favorite girlfriends were there which just topped off the evening with happiness.
Saturday the whole huge crew, me, Kevin, Anne, Jason, Emma, my Mom and Dad and Emma's Dad and grandparents all descended on Miyako for Hibachi and yummy, yummy sushi. Their Pink Lady (Spicy tuna, topped off with white tuna and a surprise burst in your mouth paper thin slice of lemon) is pretty close to perfection as it gets.
Later that evening both Kevin and I got to play at the Southgate house.
I actually talked my Mom and Dad into going and I think one of my most happy moments was when every time Kevin would get done with a song my Mom would yell "Yay Kevin!!! And clap like crazy...it was awesome!!! She even wanted a CD...which Kevin gave her today. Seriously, seriously awesome.
Lovely Crash got to rock the ballroom and it was just wonderful. One of our better sets if I do say so...and a bunch of friends came out and my Mom and Dad actually liked it! That was just the BEST!. I'd have to say I think they had a pretty good time! :-)
Afterwards I brought them back home and Anne and I went back to catch Oso bear and some of the other folks at Southgate house, then finished up our evening with an unexpected surprise...the Lakota "Class of 80" were celebrating right behind SGH at Bart's and I got to see some wonderful folks I hadn't seen in a long long time...
Today? well...not quite as fun, seeing as I can't have anything but clear liquids and had to take some pretty nasty antibiotics to get rid of all the "bad bacteria" in my digestive tract...so today was a lot of nauseousness and nervousness and crying.
But I did it surrounded by the folks I love the best. And Anne and I even got in a half an hour of yoga and visualization. We also all set and watched the "holzer home movies" so I got to see my 4 year old self dancing like nobodies business...I guess some things don't change all that much do they?
And right now?
I am finishing up some loose ends...packing for the hospital and trying not to cry.
Please send positive energy tomorrow at 9:30 am when I head into surgery and send a HUGE amount to my surgeon Dr. Janice Rafferty. I've made peace with all that business...got a second opinion and now know she and I don't need to be the best of friends...she just needs to do the best job she can to make me well.
Tomorrow the bravest thing I will ever do so far in my life is get in the car to go to the hospital.
But again...I can rock anything...
Sending you all as much love and support that you've given me so far on this journey.
I love you all.
As soon as I can be up and about enough to type I'll give you all an update and a thorough rundown of my hospital stay.(expect scathing nurse commentary and no holds barred reviews of hospital food...)
Tomorrow afternoon I will be 2/3 done.
Let's do this thing!!
Which is awesome because tomorrow is Chunk Two of my journey. Surgery.
My Mom and Dad came all the way up from Texas to spend some time with me and our visit was just delightful! Friday evening we had a sunset supper at Joe's Crab Shack and it was delicious, if cracked crab legs dipped in melted butter isn't pretty close to nirvana...I don't know what is! Afterwards I got to spend some celebratory time with my friend Jill at her bachelorette party...all my favorite girlfriends were there which just topped off the evening with happiness.
Saturday the whole huge crew, me, Kevin, Anne, Jason, Emma, my Mom and Dad and Emma's Dad and grandparents all descended on Miyako for Hibachi and yummy, yummy sushi. Their Pink Lady (Spicy tuna, topped off with white tuna and a surprise burst in your mouth paper thin slice of lemon) is pretty close to perfection as it gets.
Later that evening both Kevin and I got to play at the Southgate house.
I actually talked my Mom and Dad into going and I think one of my most happy moments was when every time Kevin would get done with a song my Mom would yell "Yay Kevin!!! And clap like crazy...it was awesome!!! She even wanted a CD...which Kevin gave her today. Seriously, seriously awesome.
Lovely Crash got to rock the ballroom and it was just wonderful. One of our better sets if I do say so...and a bunch of friends came out and my Mom and Dad actually liked it! That was just the BEST!. I'd have to say I think they had a pretty good time! :-)
Afterwards I brought them back home and Anne and I went back to catch Oso bear and some of the other folks at Southgate house, then finished up our evening with an unexpected surprise...the Lakota "Class of 80" were celebrating right behind SGH at Bart's and I got to see some wonderful folks I hadn't seen in a long long time...
Today? well...not quite as fun, seeing as I can't have anything but clear liquids and had to take some pretty nasty antibiotics to get rid of all the "bad bacteria" in my digestive tract...so today was a lot of nauseousness and nervousness and crying.
But I did it surrounded by the folks I love the best. And Anne and I even got in a half an hour of yoga and visualization. We also all set and watched the "holzer home movies" so I got to see my 4 year old self dancing like nobodies business...I guess some things don't change all that much do they?
And right now?
I am finishing up some loose ends...packing for the hospital and trying not to cry.
Please send positive energy tomorrow at 9:30 am when I head into surgery and send a HUGE amount to my surgeon Dr. Janice Rafferty. I've made peace with all that business...got a second opinion and now know she and I don't need to be the best of friends...she just needs to do the best job she can to make me well.
Tomorrow the bravest thing I will ever do so far in my life is get in the car to go to the hospital.
But again...I can rock anything...
Sending you all as much love and support that you've given me so far on this journey.
I love you all.
As soon as I can be up and about enough to type I'll give you all an update and a thorough rundown of my hospital stay.(expect scathing nurse commentary and no holds barred reviews of hospital food...)
Tomorrow afternoon I will be 2/3 done.
Let's do this thing!!
Monday, August 2, 2010
Control...
Ah Janet Jackson I know of what you speak...
And this is a real hard one for me to write.
In this multi chunked journey that is rectal cancer, I have done my best to deal with life and this situation one day, one chunk, sometimes one minute at a time...
So I dealt with chunk one...(rather extraordinarily if you ask me!! I mean Tumor GONE people!!) I took my meds on time...showed up for radiation, didn't eat or drink things they said I shouldn't and did everything, absolutely everything I could.
Now on to chunk two.
Surgery.
As many of you know although multi talented, a surgery degree is something that I do not have. Which means that someone other than myself is going to be doing this chunk for me...which SCARES the living bejeesuscrap out of me, but which my friend Lucia beautifully and helpfully pointed out the flipside...this time I don't have to do anything. Which for about 20 minutes made me feel better...until "Con-trooool!!!", (Janet's singing really loud right now can you hear her???) rears it's ugly head.
I have to tell you I don't much like my surgeon.
And that worries me...don't get me wrong she has impeccable credentials...too impeccable if you ask me, because if they were any less I'd have no problem ditching her and finding a new surgeon that didn't want to take quite so much out of my body and had a damn better bedside manner..
Everyone and I do mean EVERYONE lists her as the best...even other Dr's I've asked, websites I have feverishly researched and even my "Second opinion" benefit through P&G lists her as number one...(traitors!!!)
Although I know ironically when I pull through I will want to thank her(i typed "feverishly" but decided to delete it, not calling that energy down!)...but it's tough for me because I don't like her...she is condescending, won't give me the information I seek and quite frankly is kind of a bitch...she's very dry and couldn't see why I was upset when I found out at my last visit that instead of the 2-5 inches I thought they'd be taking from what I understood to be my "rectum' (and I got this understanding from watching NUMEROUS people go through cancer surgery...they take the tumor (which in my case is gone) take an additional inch or two extra margins for safety's sake and you're done...) they'll be taking about 10 inches all the way to my large intestine..I essentially won't have a rectum any more...
This made me very upset. She used the same damn cartoon picture of your digestive insides to draw it out for me...where the hell were her drawing skills at my last visit Hmmm???
And seriously instead of saying in essence " well YOU misunderstood what part of the body is actually your rectum" and "Well rectal cancer is different" couldn't she have just given me a hug or something and told me everything was gonna be OK and that she was sorry it was scaring me...?
Plus I got ZERO info from her when asking how my life was going to be changed after surgery...do I have to be 2 ft from a bathroom from the rest of my life?...will I just have to forget about eating meat or skyline?? The only thing she could say was "it depends on the person" which somehow puts the onus back on me, as if the outcome is mine instead of hers...Which really at the end of the day I'm OK with but I want to KNOW NOW! The only thing she would say is there's a 20% chance I won't have any control over my bowels...fun huh? But I plan NOT to be in that percentage.
I will tell you it did not make me feel any better (and if one more person out there tells me to stop doing research on the net I am going to scream...) that out of the folks who had had this surgery about 85% wish they hadn't done it...they had things to say like "I just wish I had a colostomy bag" or "wish I'd never had the surgery done"...this does not instill confidence. Also I had a discussion with a nursing student last night that was telling me all about the class she takes to master saying nothing at all to the patient...when asked why this was necessary...she replied "because they don't want to scare the patient".
Ah news flash people...it isn't working!
I'm not a child and I deserve to know EXACTLY what all this means to me and my body as well as my emotional life.
At least than I can come to grips with it, or decide not to have the surgery or something...right now I am just left with having to deal with whatever the outcome is after surgery.
With the Dr. I don't like.
Having her slit me from navel to pubic bone, cutting out a large chunk of my body, taking the cautious side of removing more instead of less...in essence to cover her ass....leaving me with a life I don't know right now will be worth living. Which I KNOW in my heart of hearts will be considered barbaric in just 10-20 years...and I will be dealing with the aftermath for the REST OF MY LIFE.
Yeah, I'm crying right now people.
Not too mention surgery is risky. It's never 100%...and how many people die from an oops?? An oops done by a "brilliant surgeon with impeccable credentials" I have never wanted to die stupid...you know choking on a burger in Burger King restroom...or falling off of my high heels and cracking my head open on a street curb. OR being a damn "oops" statistic, that would just really piss me off...a comical end to an earnestly determined well lived life. Nobody wants their punctuation mark to their life be a joke...or a question mark. Or a laugh track or clown horn.
I just have to say this..if I do end up an oops...please sue the shit out of HER(yeah how does it feel not to have YOUR ass??) and give the money to Emma for college. It will make me feel infinitely better that some good will come from it.
Because in the world of control the bottom line is I don't want to die. I'm not ready, I haven't done enough. I haven't been to SXSW, or learned how to make stained glass, or made a souffle...or retired to a little village in Italy where Anne and I will live making dinner from the basil and tomatoes in our garden and drinking lot and lots of really good wine.
I am guessing unless you are dying from a terminal illness or are over the age of 100 you are not being brickwalled by your mortality at the moment like I am.
It does not feel good people :-(
I don't gamble...and what I am facing right now is a crapshoot..nothing more or less.
So please people, send me some positive energy, I think I need to be in a better frame of mind before I head into this surgery, because that's all I can do, that's all I can control.
Shut up Janet.
And this is a real hard one for me to write.
In this multi chunked journey that is rectal cancer, I have done my best to deal with life and this situation one day, one chunk, sometimes one minute at a time...
So I dealt with chunk one...(rather extraordinarily if you ask me!! I mean Tumor GONE people!!) I took my meds on time...showed up for radiation, didn't eat or drink things they said I shouldn't and did everything, absolutely everything I could.
Now on to chunk two.
Surgery.
As many of you know although multi talented, a surgery degree is something that I do not have. Which means that someone other than myself is going to be doing this chunk for me...which SCARES the living bejeesuscrap out of me, but which my friend Lucia beautifully and helpfully pointed out the flipside...this time I don't have to do anything. Which for about 20 minutes made me feel better...until "Con-trooool!!!", (Janet's singing really loud right now can you hear her???) rears it's ugly head.
I have to tell you I don't much like my surgeon.
And that worries me...don't get me wrong she has impeccable credentials...too impeccable if you ask me, because if they were any less I'd have no problem ditching her and finding a new surgeon that didn't want to take quite so much out of my body and had a damn better bedside manner..
Everyone and I do mean EVERYONE lists her as the best...even other Dr's I've asked, websites I have feverishly researched and even my "Second opinion" benefit through P&G lists her as number one...(traitors!!!)
Although I know ironically when I pull through I will want to thank her(i typed "feverishly" but decided to delete it, not calling that energy down!)...but it's tough for me because I don't like her...she is condescending, won't give me the information I seek and quite frankly is kind of a bitch...she's very dry and couldn't see why I was upset when I found out at my last visit that instead of the 2-5 inches I thought they'd be taking from what I understood to be my "rectum' (and I got this understanding from watching NUMEROUS people go through cancer surgery...they take the tumor (which in my case is gone) take an additional inch or two extra margins for safety's sake and you're done...) they'll be taking about 10 inches all the way to my large intestine..I essentially won't have a rectum any more...
This made me very upset. She used the same damn cartoon picture of your digestive insides to draw it out for me...where the hell were her drawing skills at my last visit Hmmm???
And seriously instead of saying in essence " well YOU misunderstood what part of the body is actually your rectum" and "Well rectal cancer is different" couldn't she have just given me a hug or something and told me everything was gonna be OK and that she was sorry it was scaring me...?
Plus I got ZERO info from her when asking how my life was going to be changed after surgery...do I have to be 2 ft from a bathroom from the rest of my life?...will I just have to forget about eating meat or skyline?? The only thing she could say was "it depends on the person" which somehow puts the onus back on me, as if the outcome is mine instead of hers...Which really at the end of the day I'm OK with but I want to KNOW NOW! The only thing she would say is there's a 20% chance I won't have any control over my bowels...fun huh? But I plan NOT to be in that percentage.
I will tell you it did not make me feel any better (and if one more person out there tells me to stop doing research on the net I am going to scream...) that out of the folks who had had this surgery about 85% wish they hadn't done it...they had things to say like "I just wish I had a colostomy bag" or "wish I'd never had the surgery done"...this does not instill confidence. Also I had a discussion with a nursing student last night that was telling me all about the class she takes to master saying nothing at all to the patient...when asked why this was necessary...she replied "because they don't want to scare the patient".
Ah news flash people...it isn't working!
I'm not a child and I deserve to know EXACTLY what all this means to me and my body as well as my emotional life.
At least than I can come to grips with it, or decide not to have the surgery or something...right now I am just left with having to deal with whatever the outcome is after surgery.
With the Dr. I don't like.
Having her slit me from navel to pubic bone, cutting out a large chunk of my body, taking the cautious side of removing more instead of less...in essence to cover her ass....leaving me with a life I don't know right now will be worth living. Which I KNOW in my heart of hearts will be considered barbaric in just 10-20 years...and I will be dealing with the aftermath for the REST OF MY LIFE.
Yeah, I'm crying right now people.
Not too mention surgery is risky. It's never 100%...and how many people die from an oops?? An oops done by a "brilliant surgeon with impeccable credentials" I have never wanted to die stupid...you know choking on a burger in Burger King restroom...or falling off of my high heels and cracking my head open on a street curb. OR being a damn "oops" statistic, that would just really piss me off...a comical end to an earnestly determined well lived life. Nobody wants their punctuation mark to their life be a joke...or a question mark. Or a laugh track or clown horn.
I just have to say this..if I do end up an oops...please sue the shit out of HER(yeah how does it feel not to have YOUR ass??) and give the money to Emma for college. It will make me feel infinitely better that some good will come from it.
Because in the world of control the bottom line is I don't want to die. I'm not ready, I haven't done enough. I haven't been to SXSW, or learned how to make stained glass, or made a souffle...or retired to a little village in Italy where Anne and I will live making dinner from the basil and tomatoes in our garden and drinking lot and lots of really good wine.
I am guessing unless you are dying from a terminal illness or are over the age of 100 you are not being brickwalled by your mortality at the moment like I am.
It does not feel good people :-(
I don't gamble...and what I am facing right now is a crapshoot..nothing more or less.
So please people, send me some positive energy, I think I need to be in a better frame of mind before I head into this surgery, because that's all I can do, that's all I can control.
Shut up Janet.
Tuesday, July 20, 2010
Believe.....
Believe...
That's a strong word.
And one that works.
I am happy to have just returned from the surgeon's and my TUMOR IS GONE!!!!!!!!!!!!!
There's a small scar where it used to be.
I am profoundly, profoundly grateful.
I owe Team Fuck Off my life, and my medical team as well.
Now I believe...I'll go have a celebratory drink with the team..I am hugging each and everyone of you in person. Multiple, multiple times. And even those who can't be with us tonite...I am hugging you mentally, multiple, multiple times.
I dearly love you all. I love my life, I love life period.
And you.
You better believe it!!!!
That's a strong word.
And one that works.
I am happy to have just returned from the surgeon's and my TUMOR IS GONE!!!!!!!!!!!!!
There's a small scar where it used to be.
I am profoundly, profoundly grateful.
I owe Team Fuck Off my life, and my medical team as well.
Now I believe...I'll go have a celebratory drink with the team..I am hugging each and everyone of you in person. Multiple, multiple times. And even those who can't be with us tonite...I am hugging you mentally, multiple, multiple times.
I dearly love you all. I love my life, I love life period.
And you.
You better believe it!!!!
B-L-O-G-G-E-D Down
Well hello gentle reader, we haven't seen much of each other lately have we?
And here's why, tomorrow...yes tomorrow is a BIG day. I find out from my surgeon (via a sonogram I'm hoping) just what outcome the radiation and chemo had on my tumor.
There's a 25% chance that it's disappeared completely.
So the question of the day is "Do you feel lucky?"
My answer is "Yes I do".
But in the spirit of staying positive today is not the day to write about my last three weeks of recovery of what I had to go through to get to this day. Because truth be told it was AWFUL.
I am just now feeling back to my normal self...well I won't say normal..but I will say I feel better.
I quit drinking Coke. Yeah...I did. And that was such a part of how I defined this good ole' southern gal that I am having a little identity issue lately. I trust this too shall pass...maybe I'll find out I was really a Bostonion or SoCal Beach babe all these years instead...wouldn't that be something?
So here's a request to the Universe...to you...to anyone you know, to anyone who's listening...PLEASE send some positive energy my way tomorrow.
I have taken to envisioning my rectum as a beautiful golden pipe! Join me in that would you!? Shining, healthy, whole and gleaming!!
Send me some positive energy and say it with me...I am healthy and cancer FREE!!!
My appointment with the surgeon is at 3:00 PM tomorrow.
Let's see what a difference some directed positive energy can make.
I've accomplished many things in my life by doing that...but I think this is the most important one by far.
Because Yes "I feel LUCKY!!"
But I will also take all the help I can get...
And here's why, tomorrow...yes tomorrow is a BIG day. I find out from my surgeon (via a sonogram I'm hoping) just what outcome the radiation and chemo had on my tumor.
There's a 25% chance that it's disappeared completely.
So the question of the day is "Do you feel lucky?"
My answer is "Yes I do".
But in the spirit of staying positive today is not the day to write about my last three weeks of recovery of what I had to go through to get to this day. Because truth be told it was AWFUL.
I am just now feeling back to my normal self...well I won't say normal..but I will say I feel better.
I quit drinking Coke. Yeah...I did. And that was such a part of how I defined this good ole' southern gal that I am having a little identity issue lately. I trust this too shall pass...maybe I'll find out I was really a Bostonion or SoCal Beach babe all these years instead...wouldn't that be something?
So here's a request to the Universe...to you...to anyone you know, to anyone who's listening...PLEASE send some positive energy my way tomorrow.
I have taken to envisioning my rectum as a beautiful golden pipe! Join me in that would you!? Shining, healthy, whole and gleaming!!
Send me some positive energy and say it with me...I am healthy and cancer FREE!!!
My appointment with the surgeon is at 3:00 PM tomorrow.
Let's see what a difference some directed positive energy can make.
I've accomplished many things in my life by doing that...but I think this is the most important one by far.
Because Yes "I feel LUCKY!!"
But I will also take all the help I can get...
Thursday, June 17, 2010
Chunk 1...2 Days To Go
2 More days. 2 more radiation treatments. 12 more chemo pills.
I need you to send some positive energy my way the next two days to vaporize this tumor out of existance!!!!!
Send pink hearts, send healing energy streams, send starwars-like figures with healthy ray guns, send tiny monsters to eat the damn thing up, send cooling healing waters...do it. I need it and I will be sending myself all those things too.
Goal..PRISTINE RECTUM. (It's attainable believe it!!)
My Horoscope for tomorrow:
You might feel as if you are in total confusion today, Beth. The goal you had set for yourself and in which you invested all of your energy is beginning to change its orientation. But where is it taking you now? That is the question you might be asking yourself subconsciously. Try not to let the tension build up. You need to be as patient as possible!
I am ready for chunk 1 to be OVER.
I want the diarrhea and burning to stop.
I want to have an appetite.
I want to not be exhausted.
I want to feel like combing my hair and brushing my teeth.
I'm ready to start healing.
Your love and good energy have kept me going!!
I maybe down but I am certainly not out and yes I am still rocking it!!
After my last dose of chemo Friday night I planning on sleeping for the next 3 or 4 days. As much as possible...
And as soon as it's out of my system, here comes yoga, walking and healthy stuff for my body and mind.
I am now getting ready for Chunk Two.
I will be ready. (But it's not like I'm tense or impatient or anything...lol)
Oh and Team Fuck Off...I think a celebration night is in order sometime next week...don't you? :-)
I need you to send some positive energy my way the next two days to vaporize this tumor out of existance!!!!!
Send pink hearts, send healing energy streams, send starwars-like figures with healthy ray guns, send tiny monsters to eat the damn thing up, send cooling healing waters...do it. I need it and I will be sending myself all those things too.
Goal..PRISTINE RECTUM. (It's attainable believe it!!)
My Horoscope for tomorrow:
You might feel as if you are in total confusion today, Beth. The goal you had set for yourself and in which you invested all of your energy is beginning to change its orientation. But where is it taking you now? That is the question you might be asking yourself subconsciously. Try not to let the tension build up. You need to be as patient as possible!
I am ready for chunk 1 to be OVER.
I want the diarrhea and burning to stop.
I want to have an appetite.
I want to not be exhausted.
I want to feel like combing my hair and brushing my teeth.
I'm ready to start healing.
Your love and good energy have kept me going!!
I maybe down but I am certainly not out and yes I am still rocking it!!
After my last dose of chemo Friday night I planning on sleeping for the next 3 or 4 days. As much as possible...
And as soon as it's out of my system, here comes yoga, walking and healthy stuff for my body and mind.
I am now getting ready for Chunk Two.
I will be ready. (But it's not like I'm tense or impatient or anything...lol)
Oh and Team Fuck Off...I think a celebration night is in order sometime next week...don't you? :-)
Wednesday, June 16, 2010
Social Networking...
I think my friends may be a little worried about me.
Why?
I think because I have not dissapeared, I still manage to work, go to radiation every day, go to the grocery store (sometimes...)make it to Northside Tavern for "Karaoke Fantatstic Thursday's (even if for an hour and a gingerale)once a week to see all my fabulous friends in one place. I'm still going to band practice, I think they might be worried that I'm trying to do too much, BUT these things make me feel GOOD!...and maybe they think I'm not talking about my worries as much as I should.
Most of the time when people ask me how I am doing, Here's what I say: "Fabulous!".
And I mean it. Because I am doing fabulously.
And here's why: I have not run away to Tahiti, joined a religious cult, started drinking wheatgrass and only wheatgrass, bitchslapped a Dr., started doing heavy drugs, eaten myself to the size of a blimp, open my mouth and screamed for 4 days straight or banged my head against a wall repeatedly...although ALL of these things have crossed my mind. I am VERY grounded in what's happening to me...I have not gone off the deep end.
In essence I have tried to keep my breakdowns a little private...and here's why
I have worries...a fucking boat ton right now...besides my health (obviously...)I worry about Emma, Kevin, Work, germs, the house, my kitties (Jasper is not doing too well...) My after chemo, my car is dying, having enough money, my friends, my band, I could go on and on and on...There is pretty much nothing I am not worried about right now...I worry because I can get very little done right now to make ANY of these things better. I'm "worried sick"...only I can't be "worried sick" right now...it's not an option. Trust me Emma and Kevin get an ear load. (and both deserve kudos and hugs when you see them!!!!)..but only when I can't keep it at bay or it comes sweeping in. I am honoring all my feelings right now if I feel like crying I cry, if I feel like sleeping I sleep and if I feel like going to Northside Tavern I go..
Here's the thing I have cancer,and yes right now I feel like shit, but I am not dead, nor do I plan to be anytime in the next 50 years.
And it's important for me to feel that I am still alive...still a part and get some energy from being around my friends in a normal setting, and I really don't want to dump on my friends on a fun evening out, I know I CAN, but I don't want to add more to their worries, it just adds to mine....it's always made me feel good to see my friends, but now it's saving my life more than you know.
So when you see me and I say I am "Fabulous" do not think me deranged...
And don't think you won't see me break down at some point you will, from what I understand "Chunk 1" is a walk in the park compared to what's to come...
So allow me my normalcy as long as I can get it...
Trust me if I need something I will ask, if I need to sleep or can't do something I will tell you. And your turn to be the "dumpee" is coming...you can count on it.
I love you all.
Why?
I think because I have not dissapeared, I still manage to work, go to radiation every day, go to the grocery store (sometimes...)make it to Northside Tavern for "Karaoke Fantatstic Thursday's (even if for an hour and a gingerale)once a week to see all my fabulous friends in one place. I'm still going to band practice, I think they might be worried that I'm trying to do too much, BUT these things make me feel GOOD!...and maybe they think I'm not talking about my worries as much as I should.
Most of the time when people ask me how I am doing, Here's what I say: "Fabulous!".
And I mean it. Because I am doing fabulously.
And here's why: I have not run away to Tahiti, joined a religious cult, started drinking wheatgrass and only wheatgrass, bitchslapped a Dr., started doing heavy drugs, eaten myself to the size of a blimp, open my mouth and screamed for 4 days straight or banged my head against a wall repeatedly...although ALL of these things have crossed my mind. I am VERY grounded in what's happening to me...I have not gone off the deep end.
In essence I have tried to keep my breakdowns a little private...and here's why
I have worries...a fucking boat ton right now...besides my health (obviously...)I worry about Emma, Kevin, Work, germs, the house, my kitties (Jasper is not doing too well...) My after chemo, my car is dying, having enough money, my friends, my band, I could go on and on and on...There is pretty much nothing I am not worried about right now...I worry because I can get very little done right now to make ANY of these things better. I'm "worried sick"...only I can't be "worried sick" right now...it's not an option. Trust me Emma and Kevin get an ear load. (and both deserve kudos and hugs when you see them!!!!)..but only when I can't keep it at bay or it comes sweeping in. I am honoring all my feelings right now if I feel like crying I cry, if I feel like sleeping I sleep and if I feel like going to Northside Tavern I go..
Here's the thing I have cancer,and yes right now I feel like shit, but I am not dead, nor do I plan to be anytime in the next 50 years.
And it's important for me to feel that I am still alive...still a part and get some energy from being around my friends in a normal setting, and I really don't want to dump on my friends on a fun evening out, I know I CAN, but I don't want to add more to their worries, it just adds to mine....it's always made me feel good to see my friends, but now it's saving my life more than you know.
So when you see me and I say I am "Fabulous" do not think me deranged...
And don't think you won't see me break down at some point you will, from what I understand "Chunk 1" is a walk in the park compared to what's to come...
So allow me my normalcy as long as I can get it...
Trust me if I need something I will ask, if I need to sleep or can't do something I will tell you. And your turn to be the "dumpee" is coming...you can count on it.
I love you all.
Because When it Rains it Pours...Raccoons Apparently...
So after yesterday I was EXHAUSTED.
I had to fight the fight with Dr. Bitchslap...then go back to the hospital to spend another two hours get my new "boost" markings...or as I explained to someone, "Yay! Now my butt looks like a Deer target instead of a Bear Target!!".
The only saving graces were getting to spend some time with my work team at lunch (Team FO P&G Axillary!!)...and my friend Jen-Jen came over to distract me, so we dished and watched Mama-Mia...all the while still dealing with "Baby's on Fire" syndrome.
So I went without a nap, planning on going to bed early because face it I'm freaking exhausted. So I ate a little early, took my meds...soothed my body and mind down and was just heading up the stairs and as I went to go up the stairs I glanced into the kitchen and there were two raccoons...ok on up to be...WTF?? What were two raccoons doing in my house????
I looked at them..they looked at me...at least they weren't growling at me (actually they looked a little shy and freaked out)...but then that scene from that movie, you know the one, where the raccoon inevitably jumps on someones face and they dance around in a circle and scream while the raccoon eats the guys face off????...yep that's what I was thinking.
And of course my phone was in the kitchen!!, so I yelled up to Emma "Emergency, bring your phone" and she called Kevin while I tried to think of a way to herd and protect the 3 cats and simultaneously open the (locked I may add...) door and shoo the racoons out...my dining room and kitchen are open to each other through 2 doors (kinda like a circle..) so as I was herding cats I looked back into the kitchen (whilst holding the stout walking stick I keep for intruders) and they were gone!... or so I thought...I was busy trying to get the cats upstairs (as RABIES!!, CLAWING!!, FUR CARNAGE!! ran around in my head)and then I hear Emma screaming from the kitchen...poor little fella (only 1? omg where's the other one?? Did he go out the door??)was trapped by the refrigerator (and the CATFOOD) looking scared as can be...why I tried to make kissy noises and say "come on little fella I won't hurt you" trying to lure him to the door...
He then proceeded to turn around, eat the catfood and wash his hands noisely, happily in the cats water dishes...what a MESS!!!
Then he started for the dining room...and Jasper..and I was able to cut him off and then he disappeared down the basement steps...
Meanwhile Kevin is on his way and when he gets there we proceed to go over every inch of the house...there is no obvious way that they could have gotten in...he rechecks the basement for me...raccoon vanished.
We then spend til 2 AM trying to disinfect everything...bringing the catbox upstairs, just in case, barring the basement door.
Today I am double exhausted... :-(
You've always known raccoons are bandits...so now you know they are also "Time Bandits". Hmpff. Stop eating my catfood.
I had to fight the fight with Dr. Bitchslap...then go back to the hospital to spend another two hours get my new "boost" markings...or as I explained to someone, "Yay! Now my butt looks like a Deer target instead of a Bear Target!!".
The only saving graces were getting to spend some time with my work team at lunch (Team FO P&G Axillary!!)...and my friend Jen-Jen came over to distract me, so we dished and watched Mama-Mia...all the while still dealing with "Baby's on Fire" syndrome.
So I went without a nap, planning on going to bed early because face it I'm freaking exhausted. So I ate a little early, took my meds...soothed my body and mind down and was just heading up the stairs and as I went to go up the stairs I glanced into the kitchen and there were two raccoons...ok on up to be...WTF?? What were two raccoons doing in my house????
I looked at them..they looked at me...at least they weren't growling at me (actually they looked a little shy and freaked out)...but then that scene from that movie, you know the one, where the raccoon inevitably jumps on someones face and they dance around in a circle and scream while the raccoon eats the guys face off????...yep that's what I was thinking.
And of course my phone was in the kitchen!!, so I yelled up to Emma "Emergency, bring your phone" and she called Kevin while I tried to think of a way to herd and protect the 3 cats and simultaneously open the (locked I may add...) door and shoo the racoons out...my dining room and kitchen are open to each other through 2 doors (kinda like a circle..) so as I was herding cats I looked back into the kitchen (whilst holding the stout walking stick I keep for intruders) and they were gone!... or so I thought...I was busy trying to get the cats upstairs (as RABIES!!, CLAWING!!, FUR CARNAGE!! ran around in my head)and then I hear Emma screaming from the kitchen...poor little fella (only 1? omg where's the other one?? Did he go out the door??)was trapped by the refrigerator (and the CATFOOD) looking scared as can be...why I tried to make kissy noises and say "come on little fella I won't hurt you" trying to lure him to the door...
He then proceeded to turn around, eat the catfood and wash his hands noisely, happily in the cats water dishes...what a MESS!!!
Then he started for the dining room...and Jasper..and I was able to cut him off and then he disappeared down the basement steps...
Meanwhile Kevin is on his way and when he gets there we proceed to go over every inch of the house...there is no obvious way that they could have gotten in...he rechecks the basement for me...raccoon vanished.
We then spend til 2 AM trying to disinfect everything...bringing the catbox upstairs, just in case, barring the basement door.
Today I am double exhausted... :-(
You've always known raccoons are bandits...so now you know they are also "Time Bandits". Hmpff. Stop eating my catfood.
Tuesday, June 15, 2010
Baby's on Fire....
OK I am not even gonna mess around on this one. Times is bad my friends.
The lyrics that have been running around my head like a crazy hamster on a wheel for the last 4 days, brought to you by the lovely Brian Eno:
"Baby's on fire, better throw her in the water
She said she was hot stuff, and that's what baby's been reduced to...
Radiation has kicked in full force and it REALLY SUCKS.
I basically feel like I have a bladder infection 24/7...so instead of feeling like I am on fire when I am peeing I feel like that ALL...THE...TIME.
Can't sleep...I'm jumping up to go to the bathroom every 15 minutes. Not hungry...afraid to eat anything even slightly spicy because it makes the fire that much more intolerable..can't focus, can't sit down, can't stand up. Can't...stand...feeling...this ...way!!!!!!!!
It was so bad on Monday that they would not give me my radiation treatment..which of course pushed back my "Thursday-I'm-finally-done-with-chunk-one" happy day.
And the Dr. I saw at the hospital who wouldn't let me get the treatment (My regular radiation doc is on vacay) pissed me off royally because he told me in no uncertain terms that my surgeon would NOT want me having my last three "boost" treatments (Boost is where they aim a more concentrated ray at the tumor itself) because quote..unquote..."She thinks that they make it harder for you to heal".
I said "Does it make it harder for you to heal?"...then he said "Well, she thinks so" So I was banned from radiation Monday and told to return Tuesday am at 9 to talk to him after he touched base with my surgeon...
Onto, 10 AM Tuesday morning...I've set at the hospital for an hour...haven't seen the Dr., haven't had my treatment (because I'm not allowed to without talking to him first)and I was REALLY starting to get mad...and scared.
Don't know if you realize, but once they radiate you in an area of your body, they can never radiate there again. It's a one shot deal. And now I was starting to get REALLY MAD that I was going to lose these last three treatments because the surgeon "thinks it's a bad idea" and why the hell didn't I hear about this like 5 WEEKS AGO??? Would I spend the rest of my life worrying that my cancer could come back because I missed an opportunity that could never come again?
And on top of everything else... I had to go to the bathroom AGAIN. I was definitely not having a good day.
So finally I went back to the nurse's desk and asked what was going on..."Oh The Dr. doesn't need to see you today."...what?? (well then why the hell didn't he call and tell me that??) "But I can't get my treatment without his OK.."..so they called him and what did he say? "Oh it's fine the surgeon totally thinks she should have the boost."
Crap. All that worry and freak out for nothing, Dr's need to do a better job realizing that every single word out of their mouths has the potential to make a huge emotional impact, every time they open their mouths... and a day added to my chunk one schedule. (and in the back of my mind I am thinking..crap, asshole, shithead...)
BUT. I am almost done with radiation. 3...days...to...go.
Yeah, You could say I'm all kinds of "fired up".
The lyrics that have been running around my head like a crazy hamster on a wheel for the last 4 days, brought to you by the lovely Brian Eno:
"Baby's on fire, better throw her in the water
She said she was hot stuff, and that's what baby's been reduced to...
Radiation has kicked in full force and it REALLY SUCKS.
I basically feel like I have a bladder infection 24/7...so instead of feeling like I am on fire when I am peeing I feel like that ALL...THE...TIME.
Can't sleep...I'm jumping up to go to the bathroom every 15 minutes. Not hungry...afraid to eat anything even slightly spicy because it makes the fire that much more intolerable..can't focus, can't sit down, can't stand up. Can't...stand...feeling...this ...way!!!!!!!!
It was so bad on Monday that they would not give me my radiation treatment..which of course pushed back my "Thursday-I'm-finally-done-with-chunk-one" happy day.
And the Dr. I saw at the hospital who wouldn't let me get the treatment (My regular radiation doc is on vacay) pissed me off royally because he told me in no uncertain terms that my surgeon would NOT want me having my last three "boost" treatments (Boost is where they aim a more concentrated ray at the tumor itself) because quote..unquote..."She thinks that they make it harder for you to heal".
I said "Does it make it harder for you to heal?"...then he said "Well, she thinks so" So I was banned from radiation Monday and told to return Tuesday am at 9 to talk to him after he touched base with my surgeon...
Onto, 10 AM Tuesday morning...I've set at the hospital for an hour...haven't seen the Dr., haven't had my treatment (because I'm not allowed to without talking to him first)and I was REALLY starting to get mad...and scared.
Don't know if you realize, but once they radiate you in an area of your body, they can never radiate there again. It's a one shot deal. And now I was starting to get REALLY MAD that I was going to lose these last three treatments because the surgeon "thinks it's a bad idea" and why the hell didn't I hear about this like 5 WEEKS AGO??? Would I spend the rest of my life worrying that my cancer could come back because I missed an opportunity that could never come again?
And on top of everything else... I had to go to the bathroom AGAIN. I was definitely not having a good day.
So finally I went back to the nurse's desk and asked what was going on..."Oh The Dr. doesn't need to see you today."...what?? (well then why the hell didn't he call and tell me that??) "But I can't get my treatment without his OK.."..so they called him and what did he say? "Oh it's fine the surgeon totally thinks she should have the boost."
Crap. All that worry and freak out for nothing, Dr's need to do a better job realizing that every single word out of their mouths has the potential to make a huge emotional impact, every time they open their mouths... and a day added to my chunk one schedule. (and in the back of my mind I am thinking..crap, asshole, shithead...)
BUT. I am almost done with radiation. 3...days...to...go.
Yeah, You could say I'm all kinds of "fired up".
Tuesday, June 8, 2010
The Sweetest Thing...
Way, way back in the day I remember distinctly saying "I would never work at a large impersonal corporate job!!!" This was due to the fact that my Dad had a similar job and I missed him because he had to travel all the time. Plus it just didn't jive with me playing rock n roll out on the road...
Well a perfect case my friends for never saying never.
After I got off of my 10 year stint on the road as a musician I worked for a short time at an Ad Agency...this was technically my first "Real Job" ever...from a creative standpoint it wasn't bad and I got to do some truly amazing stuff like do interactive kiosks and do the very first interactive program for P&G. After I left due to the fact they much preferred folks with the single lifestyle, who could basically work around the clock (What do you mean you have to leave at 5:30 to pick up your daughter?) I left to do freelance work and worked quite a bit for P&G. There I worked for a Director named Robin Jowaisis. He knew why I had left the ad agency and he really liked the work I was doing for P&G.
So then the question started..."Hey Beth why don't you apply at P&G?" Well seriously the first time he asked me (and every subsequent time really...) I just fell out laughing. Me? Miss RocknRoller? Miss "I have purple hair and carry a lunchbox for a purse"? Me Miss "Death to Corporations" Work for "The Man"?...NO WAY...Ha Ha Ha!!! "Oh no thank you" I would tell Robin...pretty much daily...this man would not let up...the more I thought about it the funnier it seemed. This is when "proctoids" the not-so-very-nice term for P&G folks was still around and very true. Automatons in suits who looked alike, dressed alike and thought alike...
I could not picture myself there NO WAY, NO HOW.
So after about the 56th time he asked me when I was applying (I am not exaggerating on that one)I did it. Yep I did it, just to shut him up.
And OH MY GOD they offered me a job...
Now what?? Well I rationalized, I could use the benefits and I could just do it for a year to have something awesome on my resume...and so I told myself I would do it...for a year, and if at any moment I was bored or didn't like it I could leave.
And it was so weird I honestly thought it was some kind of mistake that they hired me...as much as I couldn't picture myself there...my intuition told me to take it.
And I did it...I accepted the job. And this year was my 12th anniversary there.
Yes my friends hard to believe. 12 years later.
And here's what I learned....I actually had something to offer..my experience my marketing and IT savvy and I honestly felt the longer I was there I also had a spiritual mission to help the company move forward from automatons to being able to accept working with folks like me. A lot of things have changed in the last 12 years...no suits, cell phones, working from home, testing and using new tools...I worked to be at the front of it all and now P&G is a very different place...and hopefully a little bit because of me. :-)
It's been an amazing experience, I learned to be a good project manager, a good manager, I learned to trust my rock and roll intuition, I learned how to develop applications, I got to network with some of the smartest minds in the world and meet some incredible people...
Now flash forward to today or more accurately a week ago...it was time for our section meeting and I was looking forward to it...because I hadn't seen my team since I had to break my bad news and I missed them and I also wanted to let them know I was really doing OK.
Now at P&G it's such a big company it's a lot like life itself...you have good situations and not-so-good. This time around I have been blessed with a FABULOUS team of folks I work with..the BEST hands down since I started at the company. these are folks I not only enjoy working with, but without exception would truly enjoy hanging out with them outside of work. They are all brilliant and funny and just "Good People".
They (to my surprise!) didn't bat an eyelash to my "Team Fuck off' arrangement..in fact they embraced it whole heartedly as "TFO - P&G Contingent" and at least once a week I get something from them just to cheer me up...I got my awesome hair hat with changeable colors of hair I can velcro in and out at will , funny cartoons you name it...always made me laugh...
But the biggest surprise..the sweetest thing was at our section meeting out came the tee shirts!!!
"TFO P&G Contingent - Kicking butt cancer's ass!"
Ha Ha!! My anarchy is complete...!!
Except for one thing...they handed me a package and in it was an iPad...an iPad...an IPAD!!!!!!!!!!!!!!!!!!!!!!!!
I then did the appropriate business response and burst into tears.
They said "we know things might get worse before they get better...so now you have something to stay in touch and keep occupied"
I have never had something touch me like that did.
So right now this update is for my uber supportive wonderful friends and coworkers at P&G, Sam, Delaine, Gina, Pete, Sharon, Curt, Jim, Terry and Joe and guess what guys? I am doing it on my iPad...from the bathroom!!
(Naw, not really just kidding about being in the bathroom :-))
Proctoids? What Proctoids?
Glad I followed my intuition...
Well a perfect case my friends for never saying never.
After I got off of my 10 year stint on the road as a musician I worked for a short time at an Ad Agency...this was technically my first "Real Job" ever...from a creative standpoint it wasn't bad and I got to do some truly amazing stuff like do interactive kiosks and do the very first interactive program for P&G. After I left due to the fact they much preferred folks with the single lifestyle, who could basically work around the clock (What do you mean you have to leave at 5:30 to pick up your daughter?) I left to do freelance work and worked quite a bit for P&G. There I worked for a Director named Robin Jowaisis. He knew why I had left the ad agency and he really liked the work I was doing for P&G.
So then the question started..."Hey Beth why don't you apply at P&G?" Well seriously the first time he asked me (and every subsequent time really...) I just fell out laughing. Me? Miss RocknRoller? Miss "I have purple hair and carry a lunchbox for a purse"? Me Miss "Death to Corporations" Work for "The Man"?...NO WAY...Ha Ha Ha!!! "Oh no thank you" I would tell Robin...pretty much daily...this man would not let up...the more I thought about it the funnier it seemed. This is when "proctoids" the not-so-very-nice term for P&G folks was still around and very true. Automatons in suits who looked alike, dressed alike and thought alike...
I could not picture myself there NO WAY, NO HOW.
So after about the 56th time he asked me when I was applying (I am not exaggerating on that one)I did it. Yep I did it, just to shut him up.
And OH MY GOD they offered me a job...
Now what?? Well I rationalized, I could use the benefits and I could just do it for a year to have something awesome on my resume...and so I told myself I would do it...for a year, and if at any moment I was bored or didn't like it I could leave.
And it was so weird I honestly thought it was some kind of mistake that they hired me...as much as I couldn't picture myself there...my intuition told me to take it.
And I did it...I accepted the job. And this year was my 12th anniversary there.
Yes my friends hard to believe. 12 years later.
And here's what I learned....I actually had something to offer..my experience my marketing and IT savvy and I honestly felt the longer I was there I also had a spiritual mission to help the company move forward from automatons to being able to accept working with folks like me. A lot of things have changed in the last 12 years...no suits, cell phones, working from home, testing and using new tools...I worked to be at the front of it all and now P&G is a very different place...and hopefully a little bit because of me. :-)
It's been an amazing experience, I learned to be a good project manager, a good manager, I learned to trust my rock and roll intuition, I learned how to develop applications, I got to network with some of the smartest minds in the world and meet some incredible people...
Now flash forward to today or more accurately a week ago...it was time for our section meeting and I was looking forward to it...because I hadn't seen my team since I had to break my bad news and I missed them and I also wanted to let them know I was really doing OK.
Now at P&G it's such a big company it's a lot like life itself...you have good situations and not-so-good. This time around I have been blessed with a FABULOUS team of folks I work with..the BEST hands down since I started at the company. these are folks I not only enjoy working with, but without exception would truly enjoy hanging out with them outside of work. They are all brilliant and funny and just "Good People".
They (to my surprise!) didn't bat an eyelash to my "Team Fuck off' arrangement..in fact they embraced it whole heartedly as "TFO - P&G Contingent" and at least once a week I get something from them just to cheer me up...I got my awesome hair hat with changeable colors of hair I can velcro in and out at will , funny cartoons you name it...always made me laugh...
But the biggest surprise..the sweetest thing was at our section meeting out came the tee shirts!!!
"TFO P&G Contingent - Kicking butt cancer's ass!"
Ha Ha!! My anarchy is complete...!!
Except for one thing...they handed me a package and in it was an iPad...an iPad...an IPAD!!!!!!!!!!!!!!!!!!!!!!!!
I then did the appropriate business response and burst into tears.
They said "we know things might get worse before they get better...so now you have something to stay in touch and keep occupied"
I have never had something touch me like that did.
So right now this update is for my uber supportive wonderful friends and coworkers at P&G, Sam, Delaine, Gina, Pete, Sharon, Curt, Jim, Terry and Joe and guess what guys? I am doing it on my iPad...from the bathroom!!
(Naw, not really just kidding about being in the bathroom :-))
Proctoids? What Proctoids?
Glad I followed my intuition...
Behind...
BUSY! I've been busy!
Oh I know that's not a decent excuse but, on the upside it means I have felt good enough to be busy.
I've had an amazing two weeks...my friend Cynthia was visiting from Michigan, where she was exiled a year or so ago to the UP...or Upper Peninsula as it's more widely know, a vast punishment for my beautiful musical pop culture friend.
She and I managed to do some fun things and she helped me out immeasurably getting the house in order and cooking some fabulous Mexican food...she also got a copy of the "Nutritional Healing Book" for me so I'm prepared when the radiation and chemo have ended and I need to get in tip top shape for surgery.
I managed to play Taste of Cincinnati and the gig went beautifully, save the insane heat during the day and me managing to lose the entire band as I tried to navigate the one way streets and street closures. But we made it on time and the hundreds of folks who came out to see us made it all worth while.
So, now's the time when the shit starts to "hit the fan" so to speak...last Monday was an "exercise in insane diarrhea"...really there is no other way to put it. On Tuesday when I saw the Oncologist I told him things weren't out of control but the urgency factor was getting worse. So he said "Well I think it's time to start the Imodium" so I grabbed some on the way home, thinking I was home free, but I was Oh SO WRONG!! All hell broke loose...all hell from my butt to be precise, having been only hitting the restroom 3 maybe 4 times a day so far imagine my surprise on Tuesday when I lost count at 25...yep that's right I said upwards of 25...I didn't think a person could go that much EVER. And it blew. And it hurt. And it SUCKED!!!
So Tuesday morning the call went out..."I need something else PLEASE...Imodium and I, we don't get along!" So I ended up getting a prescription for Immodil and happy to report it did the trick. The big D is now under control and no big deal.
Tuesday is not a day I care to repeat EVER!!.
However it was a sad reminder that all this stuff is supposed to get worse before it gets better.
So today It's been 4 weeks and 2 days of Chemo/radiation and I am still rocking it.
The tiredness has gotten worse but thanks to the Imomdil, nothing else has.(Take THAT diarrhea!!!) :-)
So how tired you ask?...well I am still going to radiation every morning and working and then I have the strength to do "one thing" like make breakfast and do the dishes...or drive Emma somewhere or get lunch. Pick one. Then it's nap time.
Then when I get up and it's the same thing, one thing and only one. So I have just accepted that's the way it's going to be for the next few weeks.
Chemo and radiation are over next Wednesday! (Yay!!) but then everything culminates a week or so after so...bring it on "c'...I'm ready to kick these last few days of chunk one out the door!! And shrink you out of my life forever!
Also I had the interesting experience of actually staying home this weekend. Wow...way weird!! The TFO'er's were right there with me when we stayed in Saturday night and watched Eurotrip...And you know what? It was one of the best nights I had in a long time. I had all the folks I'd go out to see with me, without the loudness and crazy people antics you would encounter on any given Saturday being out and about.
So we're coming into the home stretch of chunk one....and I'm still rocking.
Oh I know that's not a decent excuse but, on the upside it means I have felt good enough to be busy.
I've had an amazing two weeks...my friend Cynthia was visiting from Michigan, where she was exiled a year or so ago to the UP...or Upper Peninsula as it's more widely know, a vast punishment for my beautiful musical pop culture friend.
She and I managed to do some fun things and she helped me out immeasurably getting the house in order and cooking some fabulous Mexican food...she also got a copy of the "Nutritional Healing Book" for me so I'm prepared when the radiation and chemo have ended and I need to get in tip top shape for surgery.
I managed to play Taste of Cincinnati and the gig went beautifully, save the insane heat during the day and me managing to lose the entire band as I tried to navigate the one way streets and street closures. But we made it on time and the hundreds of folks who came out to see us made it all worth while.
So, now's the time when the shit starts to "hit the fan" so to speak...last Monday was an "exercise in insane diarrhea"...really there is no other way to put it. On Tuesday when I saw the Oncologist I told him things weren't out of control but the urgency factor was getting worse. So he said "Well I think it's time to start the Imodium" so I grabbed some on the way home, thinking I was home free, but I was Oh SO WRONG!! All hell broke loose...all hell from my butt to be precise, having been only hitting the restroom 3 maybe 4 times a day so far imagine my surprise on Tuesday when I lost count at 25...yep that's right I said upwards of 25...I didn't think a person could go that much EVER. And it blew. And it hurt. And it SUCKED!!!
So Tuesday morning the call went out..."I need something else PLEASE...Imodium and I, we don't get along!" So I ended up getting a prescription for Immodil and happy to report it did the trick. The big D is now under control and no big deal.
Tuesday is not a day I care to repeat EVER!!.
However it was a sad reminder that all this stuff is supposed to get worse before it gets better.
So today It's been 4 weeks and 2 days of Chemo/radiation and I am still rocking it.
The tiredness has gotten worse but thanks to the Imomdil, nothing else has.(Take THAT diarrhea!!!) :-)
So how tired you ask?...well I am still going to radiation every morning and working and then I have the strength to do "one thing" like make breakfast and do the dishes...or drive Emma somewhere or get lunch. Pick one. Then it's nap time.
Then when I get up and it's the same thing, one thing and only one. So I have just accepted that's the way it's going to be for the next few weeks.
Chemo and radiation are over next Wednesday! (Yay!!) but then everything culminates a week or so after so...bring it on "c'...I'm ready to kick these last few days of chunk one out the door!! And shrink you out of my life forever!
Also I had the interesting experience of actually staying home this weekend. Wow...way weird!! The TFO'er's were right there with me when we stayed in Saturday night and watched Eurotrip...And you know what? It was one of the best nights I had in a long time. I had all the folks I'd go out to see with me, without the loudness and crazy people antics you would encounter on any given Saturday being out and about.
So we're coming into the home stretch of chunk one....and I'm still rocking.
Thursday, May 20, 2010
Quick Update and damn the naysayers...and love the searchers.
Just so you all know...tomorrow I will have completed two weeks of Radiation and Chemo. And again so far, so good. :-)
Tiredness is getting a little more of an issue...by 2 PM I need a quick nap and my rock-n-roller lifestyle is pushed aside for a moment because I am actually tired and in bed around midnight (weird huh? so this is how most of the world lives!...)
However on the other hand I've slept more in the last two weeks than I have the last 3 years so in some ways I feel marvelous!! Even my skin feels better!
But NO nausea (YAY!!!!)
Just a tiny bit of diarrhea...but no other symptoms AT ALL. :-)
In fact the other day I was a few minutes late for Radiation, due to the lovely and unpredictable roadwork that's going on around the city that seems to change location daily...and so when I got to Christ Hospital I was hustling into the room because I didn't want to keep anybody waiting...Sean my radiologist was trailing behind me and said "Well looks like some body's got a lot of energy today!" To which I replied "Well heck yeah I feel great!!" to which Sean's reply was..."well you know you're not always going to feel good right?"
I paused for a second and my new "live in the moment self" said "Well yeah, but today I feel GREAT!"
But in my head, my old Beth self said "SHUT UP Sean!!!!
So there.
On the interesting news front, I saw a fabulous TED talk entitled "Can we eat to starve cancer?"
Click here to see the video
If you're not familiar with the TED Talks you should get to know them, they are FABULOUS!! Just search them out on YouTube...some of the world's greatest mind's discussing everything from physics, to science to creativity and beyond in a fascinating easy to understand, "Let's push this world forward kind of way!"
Just edited to give you the link, cick here, to the whole catalogue of TED talks. Seriously you should do yourself a favor and watch one daily!
Now go make yourself some spaghetti...
Tiredness is getting a little more of an issue...by 2 PM I need a quick nap and my rock-n-roller lifestyle is pushed aside for a moment because I am actually tired and in bed around midnight (weird huh? so this is how most of the world lives!...)
However on the other hand I've slept more in the last two weeks than I have the last 3 years so in some ways I feel marvelous!! Even my skin feels better!
But NO nausea (YAY!!!!)
Just a tiny bit of diarrhea...but no other symptoms AT ALL. :-)
In fact the other day I was a few minutes late for Radiation, due to the lovely and unpredictable roadwork that's going on around the city that seems to change location daily...and so when I got to Christ Hospital I was hustling into the room because I didn't want to keep anybody waiting...Sean my radiologist was trailing behind me and said "Well looks like some body's got a lot of energy today!" To which I replied "Well heck yeah I feel great!!" to which Sean's reply was..."well you know you're not always going to feel good right?"
I paused for a second and my new "live in the moment self" said "Well yeah, but today I feel GREAT!"
But in my head, my old Beth self said "SHUT UP Sean!!!!
So there.
On the interesting news front, I saw a fabulous TED talk entitled "Can we eat to starve cancer?"
Click here to see the video
If you're not familiar with the TED Talks you should get to know them, they are FABULOUS!! Just search them out on YouTube...some of the world's greatest mind's discussing everything from physics, to science to creativity and beyond in a fascinating easy to understand, "Let's push this world forward kind of way!"
Just edited to give you the link, cick here, to the whole catalogue of TED talks. Seriously you should do yourself a favor and watch one daily!
Now go make yourself some spaghetti...
Miss Independent
OK just to be clear upfront..a very sucky Kelly Clarkson song, BUT a very good title to what Ive been examining lately...
Independence. From the moment we're born that's what we're encouraged and long to do, to be...
We're encouraged to walk. to eat, to drive, to live on our own and to be independent enough to make decisions to further our education and join our lives with other people. And most of these things are celebrated as milestones...Look baby's first steps! Look She just got her license!! Graduation, and on and on...
We spend our whole lives learning and yearning to stand on our own feet (literally) and embellish and learn from our mistakes and education to become a functioning independent contributor to society.
So what's that got to do with cancer...oh dependence here I come!
The other night Kevin and I went to Kroger's for the very fun task of outfitting my house for cancer. Which means I got to spend a whole lot of money on things like Gatorade, heavy duty antibacterial cleaner and sanitizing wipes, and hand sanitizer...I spent like $200 and didn't even get any food...
And there was this one item on the list...sounds silly right now as I write about it, but it gave me pause...a long pause...Johnson's Baby Shampoo
I haven't used Johnson's baby shampoo since Emma was a baby...and before that?
When I was a baby. But even though they predict I probably won't be losing my hair, you are strongly cautioned to use a very gentle shampoo in the meantime...BABY SHAMPOO. Kevin and I had gotten everything on my list except that, and I mumbled something like "oops forgot something, you just hang here and I'll be right back" because I didn't want him to see me buying BABY SHAMPOO.
And that evening or shortly thereafter I was out and I was confessing I don't have much of an appetite and my friends were wholeheartedly agreeing I need to have a bunch of Ensure around in case I'm not getting enough nutrients. Ensure. It's like baby formula for old people...
This is a way harder pill for me to swallow than chemo.
I don't want to be a baby (although I may be whining like one at the moment lol)I don't want to be helpless. I don't want people to have to take care of me...I don't want to lose MY INDEPENDENCE.
I've worked my entire life so no man, not my parents, Emma, NO ONE needs to take care of me.
And not just me..I have some very good friends wrestling with similar questions of their own...do I go away to college? Or stay somewhere familiar? Do I get the operation that may leave me less mobile than I am now or keep looking to find a better way? How can I continue to function when I can't leave my house?
These questions raise heart rending questions and feelings because it's all centered on losing our independence. Whether it's temporary or not.
Losing your independence , at least in America, is often seen as "becoming a burden" or "not being capable" or competent or mature or...hell the list goes on and on.
I worked too hard to end up dependent.
BUT. One of the things I love to do most is help my friends..whether it's a drink when I know they are short of cash, a meal, a shoulder, a ride, a word of advice or hooking them up to a person or product that would make their lives easier or helps in the nick of time...seriously one of my favorite things, a direct result of my glorious independence that I can do that. Makes me feel GOOD.
So after some heavy duty examination here's what I arrived at:
The words Give-and-Take appear together frequently don't they?
And someone helping you doesn't mean you are help-less.
And am I denying someone else the pleasure they would get (just like I do) from helping me if I continue to be nothing but Miss Independent?
I just realized for the past 20 years I've only been living on one side of the equation...
I "Ensure" you. it won't happen again.
Independence. From the moment we're born that's what we're encouraged and long to do, to be...
We're encouraged to walk. to eat, to drive, to live on our own and to be independent enough to make decisions to further our education and join our lives with other people. And most of these things are celebrated as milestones...Look baby's first steps! Look She just got her license!! Graduation, and on and on...
We spend our whole lives learning and yearning to stand on our own feet (literally) and embellish and learn from our mistakes and education to become a functioning independent contributor to society.
So what's that got to do with cancer...oh dependence here I come!
The other night Kevin and I went to Kroger's for the very fun task of outfitting my house for cancer. Which means I got to spend a whole lot of money on things like Gatorade, heavy duty antibacterial cleaner and sanitizing wipes, and hand sanitizer...I spent like $200 and didn't even get any food...
And there was this one item on the list...sounds silly right now as I write about it, but it gave me pause...a long pause...Johnson's Baby Shampoo
I haven't used Johnson's baby shampoo since Emma was a baby...and before that?
When I was a baby. But even though they predict I probably won't be losing my hair, you are strongly cautioned to use a very gentle shampoo in the meantime...BABY SHAMPOO. Kevin and I had gotten everything on my list except that, and I mumbled something like "oops forgot something, you just hang here and I'll be right back" because I didn't want him to see me buying BABY SHAMPOO.
And that evening or shortly thereafter I was out and I was confessing I don't have much of an appetite and my friends were wholeheartedly agreeing I need to have a bunch of Ensure around in case I'm not getting enough nutrients. Ensure. It's like baby formula for old people...
This is a way harder pill for me to swallow than chemo.
I don't want to be a baby (although I may be whining like one at the moment lol)I don't want to be helpless. I don't want people to have to take care of me...I don't want to lose MY INDEPENDENCE.
I've worked my entire life so no man, not my parents, Emma, NO ONE needs to take care of me.
And not just me..I have some very good friends wrestling with similar questions of their own...do I go away to college? Or stay somewhere familiar? Do I get the operation that may leave me less mobile than I am now or keep looking to find a better way? How can I continue to function when I can't leave my house?
These questions raise heart rending questions and feelings because it's all centered on losing our independence. Whether it's temporary or not.
Losing your independence , at least in America, is often seen as "becoming a burden" or "not being capable" or competent or mature or...hell the list goes on and on.
I worked too hard to end up dependent.
BUT. One of the things I love to do most is help my friends..whether it's a drink when I know they are short of cash, a meal, a shoulder, a ride, a word of advice or hooking them up to a person or product that would make their lives easier or helps in the nick of time...seriously one of my favorite things, a direct result of my glorious independence that I can do that. Makes me feel GOOD.
So after some heavy duty examination here's what I arrived at:
The words Give-and-Take appear together frequently don't they?
And someone helping you doesn't mean you are help-less.
And am I denying someone else the pleasure they would get (just like I do) from helping me if I continue to be nothing but Miss Independent?
I just realized for the past 20 years I've only been living on one side of the equation...
I "Ensure" you. it won't happen again.
Thursday, May 13, 2010
Knock, Knock, Knock...on Wood.
Day 4...already.
Tomorrow I will have lived through my first week of Radiation and Chemo. (Yay me!!)
Here's hoping the rest goes as well and as fast as this week did.
I'm tired, really tired, but is that the chemo? Or am I just tired from being insanely busy for the last 15 years of my life??
No nausea or diarrhea or any of the other icky possibilities so far...knock wood.
Still having emotional ups and downs, but overall I am just realizing and OK with the fact that this is reality, and I just have to deal with it and do what I need to do.
Life is not without it's strangeness however...
I now have to live my life in "chunks". (As in "right now we're in Chunk 1 on day 4")
My day is dictated by my being at my radiation appt exactly on time and figuring out exactly when I have to eat so I can take my pills "exactly 30 minutes later". There is no lee-way in this. My life depends on it.
Although I have many meetings and appts in my life normally (juggling work, band and daughter is a feat unto itself...)...I am not what you would call a person with a routine. In fact I am the "chronically 5 minutes late" person...I've been that way all of my life. I never liked routines...and this week just bolstered that feeling . Routines make me feel tied down and stifled...where is the joy? Where is the spontaneity?
Routines mean I can't take off for Rio or Paris at the drop of a hat, or lose myself in painting or writing a song without limiting the creativity...not that I would actually DO that regularly (although I have in the past pre-P&G), but it's beautiful to know you could if you wanted to. And right now I can't...probably for a while.
So now the challenge is how to be creative and spontaneous in the tiny moment or "in a schedule" if you will...big challenge. But I am up for it.
On Facebook during the month of April I gave my self the challenge of writing a haiku a day for National poetry month...and it was a challenge! Some days were easy, some were frustrating and made me want to scream, some days I drew a blank, but then turned around and made that into the haiku. My favorite? The one I made for Easter: "Oh bunny, bunny. Chocolate ears are beautiful...you can't hear me now" - Still laughing over that one... Only a certain amount of syllables allowed to get across a thought or feeling...But hey I did it. And I realized sometimes constriction makes you be more brief , more meaningful, more in the moment. And it's just as deep. And I think I just realized that although spontaneity is great...sometimes it can be running away from what beauty that is right where you are right now.
And I intend to find it...knock wood.
Tomorrow I will have lived through my first week of Radiation and Chemo. (Yay me!!)
Here's hoping the rest goes as well and as fast as this week did.
I'm tired, really tired, but is that the chemo? Or am I just tired from being insanely busy for the last 15 years of my life??
No nausea or diarrhea or any of the other icky possibilities so far...knock wood.
Still having emotional ups and downs, but overall I am just realizing and OK with the fact that this is reality, and I just have to deal with it and do what I need to do.
Life is not without it's strangeness however...
I now have to live my life in "chunks". (As in "right now we're in Chunk 1 on day 4")
My day is dictated by my being at my radiation appt exactly on time and figuring out exactly when I have to eat so I can take my pills "exactly 30 minutes later". There is no lee-way in this. My life depends on it.
Although I have many meetings and appts in my life normally (juggling work, band and daughter is a feat unto itself...)...I am not what you would call a person with a routine. In fact I am the "chronically 5 minutes late" person...I've been that way all of my life. I never liked routines...and this week just bolstered that feeling . Routines make me feel tied down and stifled...where is the joy? Where is the spontaneity?
Routines mean I can't take off for Rio or Paris at the drop of a hat, or lose myself in painting or writing a song without limiting the creativity...not that I would actually DO that regularly (although I have in the past pre-P&G), but it's beautiful to know you could if you wanted to. And right now I can't...probably for a while.
So now the challenge is how to be creative and spontaneous in the tiny moment or "in a schedule" if you will...big challenge. But I am up for it.
On Facebook during the month of April I gave my self the challenge of writing a haiku a day for National poetry month...and it was a challenge! Some days were easy, some were frustrating and made me want to scream, some days I drew a blank, but then turned around and made that into the haiku. My favorite? The one I made for Easter: "Oh bunny, bunny. Chocolate ears are beautiful...you can't hear me now" - Still laughing over that one... Only a certain amount of syllables allowed to get across a thought or feeling...But hey I did it. And I realized sometimes constriction makes you be more brief , more meaningful, more in the moment. And it's just as deep. And I think I just realized that although spontaneity is great...sometimes it can be running away from what beauty that is right where you are right now.
And I intend to find it...knock wood.
Tuesday, May 11, 2010
And in the Beggining...
Well it arrived. D-Day if you will. ("D" standing for determination of course...)
Time to get the show on the road...do it. Kick this thing. Rock n roll.
And I had my first bit of good news. I qualified for a clinical trial to see if combining certain time tested drugs and combos thereof, could be more effective and contribute to a greater longevity and make the radiation more effective if used BEFORE surgery. And my friends I lucked out...instead of having to get a "port" (an IV they implant under your skin that you can hook a medicine bag to) and having chemo delivered via the port 24/7 5 days a week I was randomized (picked by random by a computer) into the PILL group.
That's right ladies and gentleman. My chemo is a pill..well 3 of them (not horse pills thank goodness) that I take twice a day...no needles..nothing A Pill.
How wonderful is science really?!? Pretty damn wonderful from my point of view at the moment. This means I also only have to go to the Dr. once a week. And can keep on a pretty regular schedule with the addition of 10 minutes of radiation a day.
So how did it go? GREAT!
I realize the effects may be cumulative and all, but Day 1? Piece O' Cake. (and please remind me of my carefree attitude when we arrive at day 23...mmm K?) But seriously with the exception of a little nasal "burny" feeling I feel just great. A tiny touch tired...but I did have to go to the grocery store and that always wears me out...so so far so GOOD!
Also I found out that the radiation I'm getting is State of the art...it actually 3-D images the tumor and lymph nodes and only treats that tissue. It's only been around for a year and I'm lucky to get to do that. 10 minutes and I am out of there...
The only bummer was waiting at the Dr's after I got there at 10 am...felling good, feeling positive and then waiting 3 hours!!!!! Fighting nervousnes is a little hard on the body and soul And I'll tell you people with cancer don't hold anything back...folks were pissed and rightfully so, it wasn't pretty.
But I made it through...and now am officially on day two. And still feeling pretty good. A touch tired perhaps but it's raining outside....who isn't longing for a nap right now...right?
Time to get the show on the road...do it. Kick this thing. Rock n roll.
And I had my first bit of good news. I qualified for a clinical trial to see if combining certain time tested drugs and combos thereof, could be more effective and contribute to a greater longevity and make the radiation more effective if used BEFORE surgery. And my friends I lucked out...instead of having to get a "port" (an IV they implant under your skin that you can hook a medicine bag to) and having chemo delivered via the port 24/7 5 days a week I was randomized (picked by random by a computer) into the PILL group.
That's right ladies and gentleman. My chemo is a pill..well 3 of them (not horse pills thank goodness) that I take twice a day...no needles..nothing A Pill.
How wonderful is science really?!? Pretty damn wonderful from my point of view at the moment. This means I also only have to go to the Dr. once a week. And can keep on a pretty regular schedule with the addition of 10 minutes of radiation a day.
So how did it go? GREAT!
I realize the effects may be cumulative and all, but Day 1? Piece O' Cake. (and please remind me of my carefree attitude when we arrive at day 23...mmm K?) But seriously with the exception of a little nasal "burny" feeling I feel just great. A tiny touch tired...but I did have to go to the grocery store and that always wears me out...so so far so GOOD!
Also I found out that the radiation I'm getting is State of the art...it actually 3-D images the tumor and lymph nodes and only treats that tissue. It's only been around for a year and I'm lucky to get to do that. 10 minutes and I am out of there...
The only bummer was waiting at the Dr's after I got there at 10 am...felling good, feeling positive and then waiting 3 hours!!!!! Fighting nervousnes is a little hard on the body and soul And I'll tell you people with cancer don't hold anything back...folks were pissed and rightfully so, it wasn't pretty.
But I made it through...and now am officially on day two. And still feeling pretty good. A touch tired perhaps but it's raining outside....who isn't longing for a nap right now...right?
A Little Break From The Norm...
After being out of my mind stressed for the past couple of weeks, I took advantage of Lovely Crash playing Columbus this past Saturday to make a mini-vacation of it. Thanks to Kevin we hightailed it up to Columbus Thursday and got to spend a few days with the worries at bay. My mission? Eat every freaking thing that I won't be allowed to eat during chemo (Raw fish, raw meat and moldy cheeses). Yeah, I know it doesn't sound good when you put it that way, but trust me I reached my goal and it was delicious!!!
Carpaccio, Spicy spaghetti Carbonara,Goat Cheese Ravioli with a braised cabbage and pancetta sauce and melted perocirno cheese with apples and truffle honey at Marcella's, Spicy Shrimp and grits, asparagus with a cheese, toasted garlic poached egg sauce (might be my favorite dish ever!!), Carpaccio (again), a wonderful bread salad with cucumbers, feta and tomatoes with a balsamic dressing and cream puffs with chocolate mousse and an ice cream that gave new meaning to the word vanilla, at The Burgundy Room. Chorizo meatballs, Serrano ham wrapped scallops and avocado salad at Arreza, a veritable sushi fest at Haiku (Anne and Kevin staged an intervention to my roll ordering afterwards) and we finished the weekend up at La Chatelaine with my favorite sandwich on the planet...proscuitto and brie on fresh crunchy french bread and a melt-in-your mouth Caesar Salad...YUM!!!!!!!!!! We didn't make it to Surly Girl Salon or Dirty Frank's hot dogs...but next time! We only had once unfortunate food incident. After the gig we went to Buckeye Donuts for falafel and sad to say it was AWFUL...it wasn't cooked and falafal paste just doesn't cut it my friends...on the plus side we did find out what Prince ordered when he stopped there after a gig in Columbus many cherry moons ago. A long john and a coffee and in true Prince fashion ate half the meal, had one of his bodyguards call the manager over and whispered in his ear "You have good coffee".
Before the band and everyone came up Kevin and I got out and about and I was happy when he and I stopped into Skully's and it just so happened to be 80's night....so we danced the night away and that made me supremely happy...
The whole weekend was great and not just because of the food...the gig went great and I got to play with Happy Chichester a long time fellow musician and a personal idol of mine...one person in music who is not only crazy talented with both guitar and funk organ skills, but he consistently has a great attitude and is nice and genuine in a profession where that is not always the case. When you watch him perform he is so obviously loving what he is doing you can't help but feel very good and very lucky you are getting to watch the performance, and Saturday night was no exception. It lifted my spirits to a great level.
And speaking of lifting spirits...my friends Elishia, Mary, Beth and Sally made the drive from Cincinnati, and my friend Anne drove down from Cleveland so I was surrounded by some of the people I love best in the world...and they all really liked each other, not surprising because my friends are individually all super awesome without exception.
Kevin and I got some snuggle time, and that made me happy too. It was nice to have a beautiful shining moment for that, not really knowing what lies ahead...
Just being around him makes me happy no matter what we are doing.
I know that this comes as no surprise to the folks who know him but he has been awesome to me through this whole thing. Unwaveringly supportive. I tell him as often as possible that he is the best boyfriend on the planet and it's true.
I am a lucky woman!
Carpaccio, Spicy spaghetti Carbonara,Goat Cheese Ravioli with a braised cabbage and pancetta sauce and melted perocirno cheese with apples and truffle honey at Marcella's, Spicy Shrimp and grits, asparagus with a cheese, toasted garlic poached egg sauce (might be my favorite dish ever!!), Carpaccio (again), a wonderful bread salad with cucumbers, feta and tomatoes with a balsamic dressing and cream puffs with chocolate mousse and an ice cream that gave new meaning to the word vanilla, at The Burgundy Room. Chorizo meatballs, Serrano ham wrapped scallops and avocado salad at Arreza, a veritable sushi fest at Haiku (Anne and Kevin staged an intervention to my roll ordering afterwards) and we finished the weekend up at La Chatelaine with my favorite sandwich on the planet...proscuitto and brie on fresh crunchy french bread and a melt-in-your mouth Caesar Salad...YUM!!!!!!!!!! We didn't make it to Surly Girl Salon or Dirty Frank's hot dogs...but next time! We only had once unfortunate food incident. After the gig we went to Buckeye Donuts for falafel and sad to say it was AWFUL...it wasn't cooked and falafal paste just doesn't cut it my friends...on the plus side we did find out what Prince ordered when he stopped there after a gig in Columbus many cherry moons ago. A long john and a coffee and in true Prince fashion ate half the meal, had one of his bodyguards call the manager over and whispered in his ear "You have good coffee".
Before the band and everyone came up Kevin and I got out and about and I was happy when he and I stopped into Skully's and it just so happened to be 80's night....so we danced the night away and that made me supremely happy...
The whole weekend was great and not just because of the food...the gig went great and I got to play with Happy Chichester a long time fellow musician and a personal idol of mine...one person in music who is not only crazy talented with both guitar and funk organ skills, but he consistently has a great attitude and is nice and genuine in a profession where that is not always the case. When you watch him perform he is so obviously loving what he is doing you can't help but feel very good and very lucky you are getting to watch the performance, and Saturday night was no exception. It lifted my spirits to a great level.
And speaking of lifting spirits...my friends Elishia, Mary, Beth and Sally made the drive from Cincinnati, and my friend Anne drove down from Cleveland so I was surrounded by some of the people I love best in the world...and they all really liked each other, not surprising because my friends are individually all super awesome without exception.
Kevin and I got some snuggle time, and that made me happy too. It was nice to have a beautiful shining moment for that, not really knowing what lies ahead...
Just being around him makes me happy no matter what we are doing.
I know that this comes as no surprise to the folks who know him but he has been awesome to me through this whole thing. Unwaveringly supportive. I tell him as often as possible that he is the best boyfriend on the planet and it's true.
I am a lucky woman!
Thursday, May 6, 2010
2010 B.C.
What I did before cancer...
Read my e-mail, work, eat, tell Emma to clean up her room, go to band practice, meet my friends out and about, facebook, think about writing a new song, read and think about food, shop for shoes, sing "big electric cat" to Jasper, watch Smokey push things off of the dining room table with her paw, worry about how long the rock and roll scene will tolerate me, call Anne and talk about restaurants and recipes, avoid cleaning my closet, eat sushi with Kevin, think "I should really get in touch with so-and so...", Call my Mom and Dad, put off doing laundry, muck about in the garden, take naps, worry how to grow my haircolor out, berate myself for not doing more artwork, cook risotto, worry about getting old...
What I do now...
Sit in abject terror at 3 AM, obsessively research "adenocarcinoma" and "the effects of chemo" on google, think about how all the food I eat will taste like metal, worry about throwing up, worry about being able to tolerate chemo, worry I won't be around for Emma, worry who will take care of the kitties, obsess about cancer, obsess over every little ache and pain worrying that my cancer has spread further, worry my hair will fall out, work, try to sleep...can't sleep, can't take Ambien because I have a Dr. appt in 4 hours, obsess about cancer, track down a lawyer so I can "have my affairs in order" worry people will find out and think badly of me or treat my band differently, talk 6 hours on the phone every night trying to explain to people what's going on, be grateful I have amazing friends, go to Dr.s appts, be on a first name with "Kara" my oncologist's receptionist...she already recognizes my voice, obsess about cancer, be sad I can't eat sushi, or carpaccio or blue cheese for a year, be sad I can't have sex for a year, be sad I can't play music out for a year, obsess about cancer, talk about cancer, think about cancer, cry, make tasteless jokes, cry, talk about cancer, lay down try to sleep for an hour, get up, obsess about cancer, hug Emma, be sad Emma has to see this, tell my cats I have cancer and I need their kitty healing energy, be upbeat and positive for a minute, think about cancer, obsess about cancer, talk about cancer, cry at band practice, cry in the grocery store, cry at dinner, cry when I am driving, try to figure out how to handle work and do all the Dr's appts etc, worry about which clinical trial group I'll be on, hug Kevin, worry about surgery, worry about throwing up, talk to my friends...about cancer, look at my art supplies and my bass and cry. Obsess about cancer, look up "adenocarinoma" and "the effects of radiation" and "colostomy" on Google. Worry I won't live and cry, and cry and cry.
I've heard people say it changes everything...I had no idea.
Read my e-mail, work, eat, tell Emma to clean up her room, go to band practice, meet my friends out and about, facebook, think about writing a new song, read and think about food, shop for shoes, sing "big electric cat" to Jasper, watch Smokey push things off of the dining room table with her paw, worry about how long the rock and roll scene will tolerate me, call Anne and talk about restaurants and recipes, avoid cleaning my closet, eat sushi with Kevin, think "I should really get in touch with so-and so...", Call my Mom and Dad, put off doing laundry, muck about in the garden, take naps, worry how to grow my haircolor out, berate myself for not doing more artwork, cook risotto, worry about getting old...
What I do now...
Sit in abject terror at 3 AM, obsessively research "adenocarcinoma" and "the effects of chemo" on google, think about how all the food I eat will taste like metal, worry about throwing up, worry about being able to tolerate chemo, worry I won't be around for Emma, worry who will take care of the kitties, obsess about cancer, obsess over every little ache and pain worrying that my cancer has spread further, worry my hair will fall out, work, try to sleep...can't sleep, can't take Ambien because I have a Dr. appt in 4 hours, obsess about cancer, track down a lawyer so I can "have my affairs in order" worry people will find out and think badly of me or treat my band differently, talk 6 hours on the phone every night trying to explain to people what's going on, be grateful I have amazing friends, go to Dr.s appts, be on a first name with "Kara" my oncologist's receptionist...she already recognizes my voice, obsess about cancer, be sad I can't eat sushi, or carpaccio or blue cheese for a year, be sad I can't have sex for a year, be sad I can't play music out for a year, obsess about cancer, talk about cancer, think about cancer, cry, make tasteless jokes, cry, talk about cancer, lay down try to sleep for an hour, get up, obsess about cancer, hug Emma, be sad Emma has to see this, tell my cats I have cancer and I need their kitty healing energy, be upbeat and positive for a minute, think about cancer, obsess about cancer, talk about cancer, cry at band practice, cry in the grocery store, cry at dinner, cry when I am driving, try to figure out how to handle work and do all the Dr's appts etc, worry about which clinical trial group I'll be on, hug Kevin, worry about surgery, worry about throwing up, talk to my friends...about cancer, look at my art supplies and my bass and cry. Obsess about cancer, look up "adenocarinoma" and "the effects of radiation" and "colostomy" on Google. Worry I won't live and cry, and cry and cry.
I've heard people say it changes everything...I had no idea.
Wednesday, May 5, 2010
A Pain in the Ass...
Anyone who knows me knows I am a person who gets things done...AKA, "a pain in the ass"...I will persevere and bug people and wrestle like a dog with a bone to make things happen.
I do my research and find the best, quickest way to make thing happen.
My Dr's are going to hate me.
But I'm telling you when you are dealing with the medical realm you have to be your own best advocate. Educate yourself. Ask questions (even if you ask the same one more than once of a different person, even if the Dr's aren't too crazy about people questioning them. But hey it's MY body.
Had I not pushed my Dr. I would have not got my diagnoses or follow up treatment as quickly as I did.
Because science is not exact and Dr's and those in the health care professions are people not super heroes(...although I suspect frequently they are miracle workers) YOU have to understand what you are going through, the options involved and also your own heart and mind (intuition is big here) to make sense and keep people active in your health care.
I'll admit I don't have a lot of trust in the system. My grandfather developed a small bedsore in a nursing home and had to have his leg amputated. the last time I had surgery on my right hand it was preceded by someone coming in to mark my hand with a big X made by a sharpie...so they quote "wouldn't operate on the wrong hand". And I could give you a dozen more stories along this line.
This does not instill confidence.
But there's a line....where confidence is shaky...faith has got to walk in.
So I will continue to be a pain in the ass. But I know there's a point where it's time to let faith come in and take over for a minute.
I may not be all that confident in the system, but I have faith I will live.
I do my research and find the best, quickest way to make thing happen.
My Dr's are going to hate me.
But I'm telling you when you are dealing with the medical realm you have to be your own best advocate. Educate yourself. Ask questions (even if you ask the same one more than once of a different person, even if the Dr's aren't too crazy about people questioning them. But hey it's MY body.
Had I not pushed my Dr. I would have not got my diagnoses or follow up treatment as quickly as I did.
Because science is not exact and Dr's and those in the health care professions are people not super heroes(...although I suspect frequently they are miracle workers) YOU have to understand what you are going through, the options involved and also your own heart and mind (intuition is big here) to make sense and keep people active in your health care.
I'll admit I don't have a lot of trust in the system. My grandfather developed a small bedsore in a nursing home and had to have his leg amputated. the last time I had surgery on my right hand it was preceded by someone coming in to mark my hand with a big X made by a sharpie...so they quote "wouldn't operate on the wrong hand". And I could give you a dozen more stories along this line.
This does not instill confidence.
But there's a line....where confidence is shaky...faith has got to walk in.
So I will continue to be a pain in the ass. But I know there's a point where it's time to let faith come in and take over for a minute.
I may not be all that confident in the system, but I have faith I will live.
Le Freak, C'est Chic..NOT
Not that I wanted to hear the words...but when I did hear the words...cancer...radiation...chemo...it took me a second but I then said "OK, I can rock this". I didn't feel angry. A little sad and inconvenienced maybe and resolute, but not angry. I've know a lot of folks who had it and turned out fine, My Mom and Dad, Randy, Emma's grandpa...I figure if they can I can.
I'm young, otherwise healthy and I have a good attitude...at least until the other day.
Yep those three words I could rock...but then I came up against one I couldn't. Colostomy. In case you don't know what that is it's an operation to bypass your rectum and normal pooping by taking a piece of your intestine and having it protrude out of your body...you then have to attach a plastic bag onto it and that's where everything comes out.
The mere thought of that flipped me out...REALLY flipped me out.
You see I was under the impression if I took Chemo and radiation to shrink the tumor before surgery that instead of having to take a large scoop out of me they would only have to take a tiny one. "You see this makes it easier" the Dr's said...
Nice!! Easier for me I thought...less of my body to barbarically rip out (something I know in my heart they wouldn't have to do if it were 20 years from now) turns out I was WRONG.
Turns out that "easier" means easier for the surgeon because it's easier to get around in there and operate. So even if it shrinks completely away...they still take out the same area...this increases the chance for a colostomy.
I WAS NOT HAPPY ABOUT THIS.
Which led to my first freak out and it wasn't pretty or chic it was the ugliest cry ever. I was in public...in the park across from the Ludlow Skyline, crying so hard I looked like a crazy person, I cried so much that afterwards my eyes looked like little tiny slits. I was scared and shaking and I was PISSED. OK I was finally angry.
I felt angry and sad...and I felt stupid and humiliated...and I was giving Kevin an earful, saying stuff that ranged between not making any sense and horrible things I should have never said and didn't really mean.
Because it finally hit me that this was going to be nothing even like a disco dance...it wasn't even remotely going to be pleasant.
And the only thing I could do about it was go through it.
I'm young, otherwise healthy and I have a good attitude...at least until the other day.
Yep those three words I could rock...but then I came up against one I couldn't. Colostomy. In case you don't know what that is it's an operation to bypass your rectum and normal pooping by taking a piece of your intestine and having it protrude out of your body...you then have to attach a plastic bag onto it and that's where everything comes out.
The mere thought of that flipped me out...REALLY flipped me out.
You see I was under the impression if I took Chemo and radiation to shrink the tumor before surgery that instead of having to take a large scoop out of me they would only have to take a tiny one. "You see this makes it easier" the Dr's said...
Nice!! Easier for me I thought...less of my body to barbarically rip out (something I know in my heart they wouldn't have to do if it were 20 years from now) turns out I was WRONG.
Turns out that "easier" means easier for the surgeon because it's easier to get around in there and operate. So even if it shrinks completely away...they still take out the same area...this increases the chance for a colostomy.
I WAS NOT HAPPY ABOUT THIS.
Which led to my first freak out and it wasn't pretty or chic it was the ugliest cry ever. I was in public...in the park across from the Ludlow Skyline, crying so hard I looked like a crazy person, I cried so much that afterwards my eyes looked like little tiny slits. I was scared and shaking and I was PISSED. OK I was finally angry.
I felt angry and sad...and I felt stupid and humiliated...and I was giving Kevin an earful, saying stuff that ranged between not making any sense and horrible things I should have never said and didn't really mean.
Because it finally hit me that this was going to be nothing even like a disco dance...it wasn't even remotely going to be pleasant.
And the only thing I could do about it was go through it.
Monday, May 3, 2010
"Just the facts Ma'am"
Physical 4/1/10 - Tested positive for Fecal occult blood in stool
Colonoscopy 4/14/10 - Found two benign polyps and a "mass"
Cancer diagnoses 4/20/10 - Adenocarcinoma in the rectal area
First Oncologist Meeting - 4/26/20 - Treatment will be 5 weeks of radiation and chemo, one month off, surgery, two months off, 6 months of chemo. I find out I qualify for a clinical trial my Oncologist recommends that I join it... Although he warns me that Surgeons do not usually support Clinical trials. He states he "does not know why".
First Radiology Oncologist Meeting - Find out I will have to have 5 weeks of radiation for 30 minutes a day 5 days a week. I also need to have sharpie drawings of "X's and O's (i.e. bulls-eyes) covered with clear plastic tape on my butt, back and hips for that entire time. I also find out that even if the cancer shrinks to nothing they will still take out the same area of where the cancer is now. My radiology Oncologist thinks there is a 50% chance I could have to have a colostomy. He also says we get one shot at this and one only because you can't go back and radiate the area a second time. This will also kill any eggs I have left in my ovaries and I will now be instantly infertile and done with menopause.
First Surgeon Meeting - I have an ultra sound. I am considered a T3N1M0 - Stage IIIB. It means the tumor has spread or about to spread through my rectal wall and one lymph node appears to be affected. It has not metastasized to anywhere else in my body. My surgeon says that if she had to operate today even without chemo/radiation there is a 90-95% chance I will NOT have to have a colostomy. However I will have to have a temporary colostomy until I finish the second round of chemo. She also states she is entirely supportive of me being in the clinical trial. She tells me I will need to have 5 weeks chemo/radiation, TWO months off, surgery, two months off and 4-6 weeks of chemo.
The prognosis for Stage IIIB rectal cancer is anywhere from 46-88%.
This means that in 5 years that out of 100 people who get rectal cancer 46-88 of them will still be alive.
I intend to be one of those. Like I said...Just the facts.
Colonoscopy 4/14/10 - Found two benign polyps and a "mass"
Cancer diagnoses 4/20/10 - Adenocarcinoma in the rectal area
First Oncologist Meeting - 4/26/20 - Treatment will be 5 weeks of radiation and chemo, one month off, surgery, two months off, 6 months of chemo. I find out I qualify for a clinical trial my Oncologist recommends that I join it... Although he warns me that Surgeons do not usually support Clinical trials. He states he "does not know why".
First Radiology Oncologist Meeting - Find out I will have to have 5 weeks of radiation for 30 minutes a day 5 days a week. I also need to have sharpie drawings of "X's and O's (i.e. bulls-eyes) covered with clear plastic tape on my butt, back and hips for that entire time. I also find out that even if the cancer shrinks to nothing they will still take out the same area of where the cancer is now. My radiology Oncologist thinks there is a 50% chance I could have to have a colostomy. He also says we get one shot at this and one only because you can't go back and radiate the area a second time. This will also kill any eggs I have left in my ovaries and I will now be instantly infertile and done with menopause.
First Surgeon Meeting - I have an ultra sound. I am considered a T3N1M0 - Stage IIIB. It means the tumor has spread or about to spread through my rectal wall and one lymph node appears to be affected. It has not metastasized to anywhere else in my body. My surgeon says that if she had to operate today even without chemo/radiation there is a 90-95% chance I will NOT have to have a colostomy. However I will have to have a temporary colostomy until I finish the second round of chemo. She also states she is entirely supportive of me being in the clinical trial. She tells me I will need to have 5 weeks chemo/radiation, TWO months off, surgery, two months off and 4-6 weeks of chemo.
The prognosis for Stage IIIB rectal cancer is anywhere from 46-88%.
This means that in 5 years that out of 100 people who get rectal cancer 46-88 of them will still be alive.
I intend to be one of those. Like I said...Just the facts.
The one that nobody talks about...
When I first understood that rectal cancer had invaded my body, honest-to-god my first reaction was "Who the hell gets Butt cancer???" Who knows?? Because it's the one nobody talks about...they talk about "Colorectal cancer" but rectal cancer kind of gets lumped in there (no pun intended) and let's face it...it's not very glamorous. I know of no big walks scheduled for Butt cancer...no telethons...no shiny pink ribbons for this cancer...
Yep you guessed it the ribbon color for my cancer is brown...shit brown.
Not even "Auburn" or "Burnt Sienna" or "Chocolate brown" but shit brown...accurate no doubt but depressing to my core. Seriously have you seen one person with a brown ribbon on? I have always hated earth tones.
Yep nobody talks about butt cancer...because it's not polite to talk about butts (unless it's in a "boo-tay" kind of way) In fact if we do talk about it you can bet it has an unpleasant side to it...we say someone is "An asshole" or a "Butt-head" or an "ass-wipe" or an "Ass kisser"...yep nothing pleasant there.
But(t), because we don't talk about it people don't know what the signs are that there is a problem and that's a problem in itself...because people don't talk about it they are scared of colonoscopies (seriously something that is no big deal whatsoever)and they are afraid to mention to the DR. that they have "a little problem down there". Had I felt freer to talk about it, or in actuality been more insistent that my Dr and I talk about it more than we did ("it's just a hemmoroid, nothing to worry about!") I might very well not be in the position I'm in now (i.e. soon to be face down with my butt exposed for all to see, with bullseye markings on it getting zapped by a machine that has links to Hiroshima and Nagasaki)
"But" you say..."I don't want to talk about butts and poop and things..."
Do you have any idea how amazing your rectum is? Really??
OK now imagine for a moment you don't have one...and instead of your wonderful rectum beautifully and dutifully delivering solid waste from your body that would not do well to have that stuff lingering inside, pretty easily with very little complication to be quickly flushed from your sight with a flick of your wrist...Instead of that you have an ugly thing protruding from your body that you have to attach a plastic bag to, you have to carry around, and empty and worry about leakage and how the hell am I going to have sex with a shit bag between us...and "Oh my god what if I smell??"
So, let's talk about butts...and if there's a problem and scheduling a colonoscopy if you need one (because everyone should have one when they turn 50)
Let's talk about butts that way...instead of having to talk about butt cancer and colostomies and god forbid... earth tone shit brown ribbons.
Yep you guessed it the ribbon color for my cancer is brown...shit brown.
Not even "Auburn" or "Burnt Sienna" or "Chocolate brown" but shit brown...accurate no doubt but depressing to my core. Seriously have you seen one person with a brown ribbon on? I have always hated earth tones.
Yep nobody talks about butt cancer...because it's not polite to talk about butts (unless it's in a "boo-tay" kind of way) In fact if we do talk about it you can bet it has an unpleasant side to it...we say someone is "An asshole" or a "Butt-head" or an "ass-wipe" or an "Ass kisser"...yep nothing pleasant there.
But(t), because we don't talk about it people don't know what the signs are that there is a problem and that's a problem in itself...because people don't talk about it they are scared of colonoscopies (seriously something that is no big deal whatsoever)and they are afraid to mention to the DR. that they have "a little problem down there". Had I felt freer to talk about it, or in actuality been more insistent that my Dr and I talk about it more than we did ("it's just a hemmoroid, nothing to worry about!") I might very well not be in the position I'm in now (i.e. soon to be face down with my butt exposed for all to see, with bullseye markings on it getting zapped by a machine that has links to Hiroshima and Nagasaki)
"But" you say..."I don't want to talk about butts and poop and things..."
Do you have any idea how amazing your rectum is? Really??
OK now imagine for a moment you don't have one...and instead of your wonderful rectum beautifully and dutifully delivering solid waste from your body that would not do well to have that stuff lingering inside, pretty easily with very little complication to be quickly flushed from your sight with a flick of your wrist...Instead of that you have an ugly thing protruding from your body that you have to attach a plastic bag to, you have to carry around, and empty and worry about leakage and how the hell am I going to have sex with a shit bag between us...and "Oh my god what if I smell??"
So, let's talk about butts...and if there's a problem and scheduling a colonoscopy if you need one (because everyone should have one when they turn 50)
Let's talk about butts that way...instead of having to talk about butt cancer and colostomies and god forbid... earth tone shit brown ribbons.
Badass
My friend January Fairy regularly calls me a Badass...meaning I rock anything...kick out the jams, get it done and make amazing things happen on a regular basis.
I really take every opportunity offered to me along with creating some of my own. Some of my more stellar achievements? Having the lead in "Once upon a Mattress" and being Anita in "West Side Story", Going to College, learning how to play 5 different instruments, being in and leading countless bands (good ones!),Being a really cool Mom, surviving two marriages, touring the world (Japan, Curacao, Turkey, Spain, Italy, Dublin and the United states), being a video and interactive producer for places like LensCrafters, and Ethicon Endosurgery and GE, making the very first interactive program for P&G (for Cascade dishwashing liquid), designing countless websites, being an amazing bartender and waitress,putting together benefits for STOPAIDS, releasing two albums good enough to make it into the Top albums of 2007 and 2009 in Cincinnati's CityBeat, having my own art showing, Buying my very own house in a neighborhood I love, and writing a cookbook.
Yes I am a Badass...just didn't realize I "Had" a bad ass...
So in steps rectal cancer...or as I try not to think of it..."wrecked-all cancer".
Every single accomplishment I did...I did and I moved on to the next awesome thing. It was an experience with good and bad things that made up the whole. And I have decided this new experience is no different. there is some good in here and I will find it. I will.
I already realize the first positive thing is I TRULY REALIZED I have the BEST FRIENDS IN THE WORLD. Have you ever sat down and counted your good friends? Literally counted?...I had never done that, just knew I had a lot of great ones. When I set down to gather the e-mails for my "Team Fuck Off" I started to realize there were a LOT of names on that list, old friends from way back in high school, new friends I have known less than a year, friends in other states and countries, So many I literally sat down and counted...and then I cried.
Because I realized that my greatest accomplishment so far was "I am a woman with MANY friends".
And the next Badass accomplishment on the list?
No longer having one...
I really take every opportunity offered to me along with creating some of my own. Some of my more stellar achievements? Having the lead in "Once upon a Mattress" and being Anita in "West Side Story", Going to College, learning how to play 5 different instruments, being in and leading countless bands (good ones!),Being a really cool Mom, surviving two marriages, touring the world (Japan, Curacao, Turkey, Spain, Italy, Dublin and the United states), being a video and interactive producer for places like LensCrafters, and Ethicon Endosurgery and GE, making the very first interactive program for P&G (for Cascade dishwashing liquid), designing countless websites, being an amazing bartender and waitress,putting together benefits for STOPAIDS, releasing two albums good enough to make it into the Top albums of 2007 and 2009 in Cincinnati's CityBeat, having my own art showing, Buying my very own house in a neighborhood I love, and writing a cookbook.
Yes I am a Badass...just didn't realize I "Had" a bad ass...
So in steps rectal cancer...or as I try not to think of it..."wrecked-all cancer".
Every single accomplishment I did...I did and I moved on to the next awesome thing. It was an experience with good and bad things that made up the whole. And I have decided this new experience is no different. there is some good in here and I will find it. I will.
I already realize the first positive thing is I TRULY REALIZED I have the BEST FRIENDS IN THE WORLD. Have you ever sat down and counted your good friends? Literally counted?...I had never done that, just knew I had a lot of great ones. When I set down to gather the e-mails for my "Team Fuck Off" I started to realize there were a LOT of names on that list, old friends from way back in high school, new friends I have known less than a year, friends in other states and countries, So many I literally sat down and counted...and then I cried.
Because I realized that my greatest accomplishment so far was "I am a woman with MANY friends".
And the next Badass accomplishment on the list?
No longer having one...
Monday, April 26, 2010
On the good foot...
Legend has it that when you start a journey if you start and step out with your right foot, your journey will be successful, and you'll return safely. I actually do this all the time. When I take a trip or have an exceptionally hard day in front of me, or an important gig, but especially on planes, since I don't like to fly. In fact I hate to fly...it's about the only thing that scares me...until now.
I actually suspect my journey started awhile ago, my body was just either a little too subtle in telling me or the more likely scenario that I didn't want to believe it so I didn't react earlier when things started to present themselves. I was OK with buying the explanation that my tiredness was linked to menopause and hey a little bleeding from hemorrhoids never hurt anybody. Lesson learned. Blood "outcho butt" is never a good thing and a case for seeing your Dr. like yesterday. I wish I could remember on the day it really started...did I have my right foot out that day? Did I?...for the sake of my sanity I'm going to say I did. Because I am most definitely not flying this plane. But I choose to believe it's going to land safely and return me to where? My life...my living breathing life, non the worse for the wear, but just a little bit smarter and healthier.
The Oncologist and I have our first meeting tomorrow, he or she is going to tell me the flight plan...and I am starting the day out with the help of some friends...on the good foot.
I actually suspect my journey started awhile ago, my body was just either a little too subtle in telling me or the more likely scenario that I didn't want to believe it so I didn't react earlier when things started to present themselves. I was OK with buying the explanation that my tiredness was linked to menopause and hey a little bleeding from hemorrhoids never hurt anybody. Lesson learned. Blood "outcho butt" is never a good thing and a case for seeing your Dr. like yesterday. I wish I could remember on the day it really started...did I have my right foot out that day? Did I?...for the sake of my sanity I'm going to say I did. Because I am most definitely not flying this plane. But I choose to believe it's going to land safely and return me to where? My life...my living breathing life, non the worse for the wear, but just a little bit smarter and healthier.
The Oncologist and I have our first meeting tomorrow, he or she is going to tell me the flight plan...and I am starting the day out with the help of some friends...on the good foot.
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