Tuesday, May 11, 2010

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!

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.

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.

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.

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.

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.

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...