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...
Thursday, May 20, 2010
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...
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