Still rocking it...even though it's horizontaly...
I'm in the middle of my 5th round...only two more to go after this one. My hand and foot issues have gotten better because I slather on "Miracle Hand Repair" (even better than Udder Budder!!) every 30 minutes. But it's worked beyond belief, it's 60% aloe formula has been the only thing to take the heat out of my hands. the fatigue though? Through the roof...I think my sleep time has extended to about 16 hours a day. Basically, sleep, get up , eat, take meds, spend 15 minutes making pithy comments on facebook, go to sleep...repeat.
Quite the challenge to live your life from a bed...
I have systematically accrued everything I needed to manage the household and myself from the small wicker tables beside my bed...although the amount and sheer volume I've amassed would blow your mind...but something to keep in mind if you or someone you know has cancer...any or all items could be a godsend to them.
I was bored today (imagine that) so I made a list...all of this and I do mean ALL is directly to my right.--->
- 1 lamp and three small wicker tables
Communication items:
- one iPod, one work computer (for the once a week I can make myself delete the HUNDREDS of e-mails, so I won't be overwhelmed when I go back to work..) One secure ID, My iPad (the SINGLE MOST IMPORTANT thing in this journey, I'd be lost and disconnected without it! thanks again to my P&G Auxiliary!!!), One Zagg computer keyboard so I can type more easily, remotes for the TV and DVD player, phone, phone charger and iPad case.
Medicine:
- One medicine box (so I can lay out what I'm taking each day so I don't under or overdose), A bottle each of Tums, Vitamin D3, Vitamin B12, Vitamin B6, Flintstones chewable with iron and a bottle of gummy vitamins to be healthy, Diphen/atropine, Hycosamine and Pepcid AC to keep the stomach pain at bay, alprazolam, ambien, elavil (which I have never even cracked)to sleep. 2 bottles of Xeloda big AND small pills (my chemo), 2 bottles of Motrin and a bottle of Advil, 2 bags of Hall's healthy immunity w/ zinc. Polysporin.
Beauty Stuff
- Cuticle scissors, toenail clippers, brush, comb, 3 lip balms, peppermint and spearmint essential oils, 3 various bottles of hand sanitizer, Cocoa Butter hand cream, Aquaphor, Shea Body Butter (2 jars), foot cooling gel, Crema Mani from Italy (a gorgeous lemon basil scented hand and lip balm) a nail file, 2 Bottles, 3 jars (one with shea butter and one with urea), 1 hand pump, all of Udder Budder cream, 5 tubes of Miracle Hand Repair, and 3 tubes of Aveeno Intense relief hand cream. 1 tin of J.R. Watkins cuticle salve (smells yummy!) 2 boxes of tissue. 2 hair scrunchies and a clip for my hair.
Things to keep me occupied:
- 12 skeins of yarn, 1 crochet hook and a pair of scissors,8 scarves that I have crocheted, 4 drawing notebooks, pastels, pencils, pens, magic markers, crayons, 2 drawing books (Drawing on the right side of the brain being one of those - Highly recommended!) watercolors. (All of which I have only used twice because I have the attention span if a gnat. *sigh*) About 20 books, 3/4 read so far..and a "fighting bug' motorized ladybug and 10 catnip mousies to amuse the kitties. And assorted magazines.
Food:
- One box of Pepperidge Farm Bordeaux cookies, a bag of Sweet tarts, a bag of Hershey kisses (both valentine editions) a bag of Godiva peppermint truffles, one lone candy cane leftover from Christmas, One Fanny May mint meltaway, 2 boxes of gum and a caffeine free Coke w/ straw.
Miscellaneous:
- One bag of large marshmallows (for when I change my bag), assorted pieces of mail, my purse, my Uggs, one gallon of water, plastic cups, One gallon of apple cider vinegar to take the heat out of my hands and feet, a pack of cigarettes, ashtray and 3 or 4 lighters, (I know, I know, I'm quitting after my final surgery...) 6 or 7 candles, from pumpkin to vanilla, because I can't use a lighter when my hands are bad, a trashcan (which needs emptying like 3 times a day...) a lint roller, loose change, a backscratcher, a Bed Buddy sinus pack I can heat up or cool when I get a headache, plastic bags for the trashcan, a hand fan for when the hotflashes hit, a pad of paper and a pen. One wicker box I can turn over and use as a table, and one dirty spoon...plus 3 cats.
And might I add all in a 3 X 3 foot space. And this doesn't even take into account all the books and DVDs.
OK listing all that stuff made me tired, I'm going back to bed...
Saturday, February 5, 2011
Monday, January 17, 2011
Truth...and Dare
One of those weeks where cancer was the least of my worries...
Emma's dad went missing for two weeks and it took it's toll. He's been found.So there's a relief there, but it took out about everything I had in the process.
When you have cancer, you just get depleted, in vitamins, minerals, weight, brain power, energy, patience, money, happiness...well really just about everything but the support and love from your friends.
And sometimes that comes in seemingly strange packages.
Even though today should have been a stellar day (Anne in town, nice day outside, hand and feet better than last time at this juncture) I couldn't sleep for the last couple of days and it took EVERYTHING I had to drag myself out of bed this morning (well, OK this afternoon) to eat with Anne, Emma and Kevin.
As I made a half hearted attempt to brush my hair, looking in the mirror I did not recognize myself. "Oh my god, I look like shit" And the truth was I did. And Anne bless her heart and the most fabulous friend I have, looked me straight in the eye and said " yeah, you do look really, really tired" And that my friends is true love. She didn't sugarcoat, she didn't try to bullshit me, she just called it like it was. Which let me know I was right and I needed to do something about it.
I feel so bad and weird all the time, sometimes my friends can kind of trick me into thinking it's not as bad as it is and it's "fabulous as usual". And sometimes that's a good thing. Today it wasn't and Anne knew it.
So after eating lunch and hugging my beautiful friend good-by, I went back to bed, because what I needed most was sleep...and lot's of it.
Daring to tell the truth. Today, a good thing.
Emma's dad went missing for two weeks and it took it's toll. He's been found.So there's a relief there, but it took out about everything I had in the process.
When you have cancer, you just get depleted, in vitamins, minerals, weight, brain power, energy, patience, money, happiness...well really just about everything but the support and love from your friends.
And sometimes that comes in seemingly strange packages.
Even though today should have been a stellar day (Anne in town, nice day outside, hand and feet better than last time at this juncture) I couldn't sleep for the last couple of days and it took EVERYTHING I had to drag myself out of bed this morning (well, OK this afternoon) to eat with Anne, Emma and Kevin.
As I made a half hearted attempt to brush my hair, looking in the mirror I did not recognize myself. "Oh my god, I look like shit" And the truth was I did. And Anne bless her heart and the most fabulous friend I have, looked me straight in the eye and said " yeah, you do look really, really tired" And that my friends is true love. She didn't sugarcoat, she didn't try to bullshit me, she just called it like it was. Which let me know I was right and I needed to do something about it.
I feel so bad and weird all the time, sometimes my friends can kind of trick me into thinking it's not as bad as it is and it's "fabulous as usual". And sometimes that's a good thing. Today it wasn't and Anne knew it.
So after eating lunch and hugging my beautiful friend good-by, I went back to bed, because what I needed most was sleep...and lot's of it.
Daring to tell the truth. Today, a good thing.
Wednesday, January 12, 2011
4,3,2,1...GO!
OK started round 4 yesterday.
Feeling good so far. Stocked up. Made some good food, went to Kroger's, went to the DR.
Now to bed for two weeks..
Kind of glad the weather's been crappy, because it makes me feel less bad about not going anywhere...I just pretend I'm on one loooong.....snow day.
On the agenda for this two week lay in?
Crocheting, checking my e-mail and facebook. Updating my blogs. Finishing up the last season of Ugly Betty, (before I go on to starting Dexter)...slathering Udder Budder on hands and feet every hour on the hour...(can you tell I'm losing my mind?)
Wish I was doing something more important...like a lay in for peace or something.
But I guess fighting for my life is as noble a cause right now.
Still rocking it....horizontally.
Feeling good so far. Stocked up. Made some good food, went to Kroger's, went to the DR.
Now to bed for two weeks..
Kind of glad the weather's been crappy, because it makes me feel less bad about not going anywhere...I just pretend I'm on one loooong.....snow day.
On the agenda for this two week lay in?
Crocheting, checking my e-mail and facebook. Updating my blogs. Finishing up the last season of Ugly Betty, (before I go on to starting Dexter)...slathering Udder Budder on hands and feet every hour on the hour...(can you tell I'm losing my mind?)
Wish I was doing something more important...like a lay in for peace or something.
But I guess fighting for my life is as noble a cause right now.
Still rocking it....horizontally.
Monday, January 3, 2011
"Half a World Away..." - REM
As of tomorrow I am halfway through my chemo...
So huge fucking YAY!!
The 10% reduction in my chemo made a big difference and I am not feeling as bad as I was so here's to the positive! I at least made it to one Christmas social celebration, but was very sad to have to sit home on New Year's Eve (I don't think I have ever done that before, come to think of it, unless I was throwing a party) But KP made it bearable with some delicious sushi from Miyako, we made some Bellini's which were insanely yummy (and yes I checked to see if I could have alcohol on my chemo, they said yes...) and laughed our way through Caddy Shack...the gopher gets me every time.
Ive also learned to plan better (groceries, when I can be up and down, when I need to stay in bed) to make the hand/foot syndrome more bearable. I am still going through pints of "Udder Budder" like it's water...but I've been telling myself it's a "spa treatment".
Although truth be told, all of my skin has come off of my hands and feet like 4 times already...ick. I'm hoping "exposed bone" isn't next.
You all know the kind of year I have had, since this has been going on since early April. So you can imagine I was not sorry to see 2010 go by the wayside.
I have been a bit down as of late...in this seemingly never ending journey. But am happy to report that I woke up on January first feeling REALLY good. (a miracle in itself considering the amount of Bellini's I consumed) not only did I feel good physically (well relatively all things considered...)I felt good mentally...like wow, the sun just came out good! in fact the best and most positive I have felt in along time.
I have a good feeling about this year...however since I'm half done, I still have a bit of road ahead of me, REM says it better than I ever could:
"This could be the saddest dusk
I’ve ever seen
Turn to a miracle
High alive
My mind is racing
As it always will
My hand is tired my heart aches
I’m half a world away here
My head sworn
To go it alone
And hold it along
Haul it along
And hold it
Go it alone
Hold it along and hold, hold.
This lonely deep sit hollow
I’m half a world
Half the world away
My shoes are gone
My life spent
I had too much to drink
I didn’t think
And I I didn’t think of you
I guess that’s all I needed
To go it alone
And hold it along
Haul it along
And hold it
Blackbirds backwards forwards and fall and hold hold.
Oh this lonely world is wasted
Pathetic eyes high alive
blind to the tide that turns the sea
This storm it came up strong
It shook the trees
And blew away our fear
I couldn’t even hear
To go it alone
And hold it along
Haul it along
And hold it
To go it alone
And hold it along
Haul it along
To go it alone
And hold it along
Haul it along
And hold it
Blackbirds backwards forwards and fall and hold hold.
This could be the saddest dusk
I’ve ever seen
Turn to a miracle
high alive
My mind is racing
As it always will
My hands tired my heart aches
I’m half a world away and go "
Here's hoping your own New Year is happy, healthy and positive in all aspects...
As for me, I am still rocking it! And hope you are too.
So huge fucking YAY!!
The 10% reduction in my chemo made a big difference and I am not feeling as bad as I was so here's to the positive! I at least made it to one Christmas social celebration, but was very sad to have to sit home on New Year's Eve (I don't think I have ever done that before, come to think of it, unless I was throwing a party) But KP made it bearable with some delicious sushi from Miyako, we made some Bellini's which were insanely yummy (and yes I checked to see if I could have alcohol on my chemo, they said yes...) and laughed our way through Caddy Shack...the gopher gets me every time.
Ive also learned to plan better (groceries, when I can be up and down, when I need to stay in bed) to make the hand/foot syndrome more bearable. I am still going through pints of "Udder Budder" like it's water...but I've been telling myself it's a "spa treatment".
Although truth be told, all of my skin has come off of my hands and feet like 4 times already...ick. I'm hoping "exposed bone" isn't next.
You all know the kind of year I have had, since this has been going on since early April. So you can imagine I was not sorry to see 2010 go by the wayside.
I have been a bit down as of late...in this seemingly never ending journey. But am happy to report that I woke up on January first feeling REALLY good. (a miracle in itself considering the amount of Bellini's I consumed) not only did I feel good physically (well relatively all things considered...)I felt good mentally...like wow, the sun just came out good! in fact the best and most positive I have felt in along time.
I have a good feeling about this year...however since I'm half done, I still have a bit of road ahead of me, REM says it better than I ever could:
"This could be the saddest dusk
I’ve ever seen
Turn to a miracle
High alive
My mind is racing
As it always will
My hand is tired my heart aches
I’m half a world away here
My head sworn
To go it alone
And hold it along
Haul it along
And hold it
Go it alone
Hold it along and hold, hold.
This lonely deep sit hollow
I’m half a world
Half the world away
My shoes are gone
My life spent
I had too much to drink
I didn’t think
And I I didn’t think of you
I guess that’s all I needed
To go it alone
And hold it along
Haul it along
And hold it
Blackbirds backwards forwards and fall and hold hold.
Oh this lonely world is wasted
Pathetic eyes high alive
blind to the tide that turns the sea
This storm it came up strong
It shook the trees
And blew away our fear
I couldn’t even hear
To go it alone
And hold it along
Haul it along
And hold it
To go it alone
And hold it along
Haul it along
To go it alone
And hold it along
Haul it along
And hold it
Blackbirds backwards forwards and fall and hold hold.
This could be the saddest dusk
I’ve ever seen
Turn to a miracle
high alive
My mind is racing
As it always will
My hands tired my heart aches
I’m half a world away and go "
Here's hoping your own New Year is happy, healthy and positive in all aspects...
As for me, I am still rocking it! And hope you are too.
Saturday, December 11, 2010
"Blogging, Balance and Udder Budder..."
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!
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!
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....
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