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....
Friday, November 19, 2010
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!!!!
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