Reflections of…

SUN 5/22/11—–

Today is NOT just like any other day.  When I take into consideration all of the distinctive things this day or its date could actually mean to all of the colorful individuals in the universe, I am in my most honest form, insignificant.  But without all of us in synergism moving together across this great world as a joined organism, we would not vitally exist or be able to have days to celebrate or to mourn or to recognize.  Can you strip yourself down to the barest of bones trying your best not to think of anything, clearing your mind?  What is there then left to contemplate?  The moment your living in right now will never ever happen again.  I often notice this when I watch really good live music.  I stand there surrounded by people all sharing what they think is the same experience, but it is in fact so very different for everyone there.  The notes being played together on stage on various instruments, the singer singing, the drink you took from your straw…these exact moments, strands, will not simultaneously collide again, EVER.

So, basically, when you look in the mirror, the reflection that you see staring back at you doesn’t look the same as it did yesterday, and it won’t look the same in 2 hours (especially post-costume change) or 3 days or 5 years from now.  Meanwhile, the experiences, interactions, and conversations that you have had in between will change the way you view life and therefor yourself.  Clinging to the fleeting youthfulness of one’s face can damage the strongest of self-esteems. And those wrinkles didn’t make their way there by doing nothing, honey.  They have been elected to show proof that you have been living…laughing hysterically at your genius best friend’s’ air-headed parkjob, making the stupidest, contorted faces at babies, being grossed out by your sisters’ gnarly habits, stretching thin skin while wiping away tears after a long, rough day;  puckering up for a kiss from your love…these are the fascinating roots and sources of fine lines and wrinkles.

So when you do turn to your shiny, silver wall-mount to check yourself, how do you keep this view of YOU on the up and up (besides a good skin care regimen and SUNBLOCK)?  Make it the best day, FOR EVERYONE.  Since we are all in this together, collaboratively [until the next rapture or so (pshh, ha)], think of others.  Aline yourself with the billions of other human beings living life here on Planet Earth too and send them out some love and gratitude for their existence and participation.  Those crinkles, creases, and folds will instantly become terribly insignificant and then say to yourself, DAMN…YOU LOOK GOOD!

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ALL AGLOW

Well hello there (you know the voice), I had no idea you’d been waiting for me…blink blink, batt batt (yes I still have eyelashes, thank Yahweh).  Its been fourteen  days since my last blog entry and twelve since my last chemotherapy sesh. You do the math to figure out where I’ve been hiding. “The effects are cumulative,” I was told over the phone yesterday (by a nurse practitioner who was returning my inquiry as to why I was feeling so terrible).  Yet, another factor about this route of treatment that I somehow wasn’t privy to, despite my extensive, exhaustive research.  So besides feeling like I got hit by the bus from “Speed” (I’m upping the corn factor on this one folks, maybe due to the painters blaring cheesy, new rock next door, yuck!), my schedule has been jam-packed.  Well if I haven’t been posting any pics or writing any blogs, what have I been doing with all of my time you may be wondering…?  I have had a more busy social life than when I was a teenager. When you have a sort of affliction, people who love you, want to see you.  They UNKNOWINGLY put  unnecessary pressure on you to show them that you are in fact, alive, sort of well, and still looking normal (and commenting on your surprisingly, wonderful appearance is always their first order of business).  It’s all out of love…Don’t get me wrong here, no one loves to hang out more than me!  And it gives me a reason to look good which in turn makes me feel better.  But damn, am I tired?  My pre-cancer self was slightly flakey (whether I would like to admit it or not and I don’t).  I was often making plans with whosit and whatsit then not showing up for whatever reason.  I felt guilty blowing things and people off, but not enough to cease or desist that behavior.  Lately, I have been keeping the majority of my engagements, yet another positive change that I have reaped from Cancer (haha Bitch, I’m beating you in every event).
-Furthermore, I express my sincere gratitude to you Cancer, for the countless coincidences in relation to my pilgrimage back to Buffalo that have occurred and continue to  reveal themselves.  The people I find myself surrounded by, the places, classes, and activities I am involved in, and the constant bright light burning in me that lights the fire under my ass to keep me forging ahead, are all small little favors from you for the shit you’ve put me through.  Good lookin’ out.  Like a contrite ex-lover seeking atonement, I knew you’d start getting me back sooner or later. –
Although we had to reschedule once because chemo took too long (as usual) last time, and as everything happens as it should, Ann had to leave work early anyways, (BREATH) we (THE LOVELY Ann of CHEZ ANN SALON and I)  finally found the time and energy to meet up for a post hairdid project chat.  We talked and laughed.  She shared lots of stories of her clients’ trials and tribulations with cancer.  Sadly, Ann mentioned some of those who unfortunately didn’t win the war, but she always reverted back to her empathy for her patients’ battles and not her own fight against cancer, as is usual for this selfless, caring individual.  She said she never missed a beat during her course (because, I think, she is a warrior princess).  Then in our talking journey we discovered that yes, the ideals regarding the blocked heart chakra and that taking care of everybody else before oneself, along with the over-mothering of others, does probably manifest itself in tumors in a woman’s breasts.  A problem of the  heart (not referring to the organ) could explain why breast cancer is slightly more common in the left breast than in the right.  Right?  Right.  Which brings us to wheeling, dealing,  and self-healing the chakras.  Much of this relates to color.

Let me break it down for you:

Pink and green: the two colors associated with healing the heart chakra.

Did the people who gave rise to pink as the signature color for breast cancer awareness (coating a new patients life instantly in a layer of pepto bismol, gag)  have secret spy information about the importance of this color in healing the heart chakra or is it just a silly fluke??  I can’t  imagine that reiki was taken into consideration when they were deciding what color their fannypacks ( for the Susan G. Komen and/or Avon walk ) would be the cutest in.  AND do they have the skinny on the importance of GREEN in healing?  Does anyone?  Green is the ONLY  thing that makes me feel NORML (not  a type-o) these days.  C’mon New York, get with the program.  If you were as ahead of the curve as your biggest city is in all things that are in vogue, perhaps my dry, blogless, nauseous, painful two weeks would have been gratifyingly filled with exercise, lots of healthy eating, hours of laughter, and fueled by more creative energy than a painter who just got dumped.  Then those of us, although hairless, characters undergoing chemotherapy in this state would manage to still have that Soul Glo.

Check out my soul glowing through all of my glorious looks from when I was rockin’  “real human hair” do’s daily…

Thanks for all your love and support.

Challenging the challenges

I’ve been living life as a (bald) women with a shaved head for the past few days.  I was less than eager to arrive at this point-writing about my final hair cutting experience.  Has the suspense been killing you?  Frankly, I have been having so much fun that the nearing end was depressing me.  Hence, the lack of a blog entry since Tuesday.  Being unable to schedule my next appointment was more saddening than actually getting the rest of my hair shaved off.  The night before the final shavedown my little keratin top was sore, and short, strawberry hairs were easy to pull out of my scalp by touching them with any slight pressure.  We (Ben and I) were worried that upon my sitting, James approaching with the clippers,  my hair would just press the eject button, and be pulled right out instead of being clipped by the vibrating razor blades.  Then low and behold, I’d be sitting there bald and exposed.  I was crying and upset.  We had waited too long to shave it (notice splotchiness in the pics)!  One of my wise friends got wind of my dilemma through my emotional, erratic text and wrote back …”Well you’re going to be bald and exposed either way so what’s the problem, babes?”  There you have it, “Duh” I thought, Jenny was right.  I’m shaving my head!  What the hell is wrong with me?

I’ve worn one of my wigs twice and not for longer than two hours each time.  It was probably the most uncomfortable couple hours my head ever went through, except for maybe the pink, spongy curlers I had to sleep in when I was a girl.  “A women must suffer for her beauty.”  Well not anymore.  I have been liberated.  I am free.  Loving and embracing cutting through the air with my new aerodynamic head has been exhilirating.  I have only had it covered because it is so damn cold here. At night if I forget to insulate my brain from the chill of the Buffalo night  (which only happened once), I dream of ice storms and hiking to far away Siberian lands without a jacket.

But along with being bald, the other gnarly side effects I have been experiencing all week have been trumping my desire to write or to enjoy starting new scarf and  hat fads.  FASCINATOR!  I have been angry, sad, and at times (Ahhh, I don’t wanna say it ) regretful.  I know how strong I truly am.   All of this garbage (life-saving medicine) that is being pumped into me  is compromising my thinking, my emotions, and my poor body.  “You could have fought harder your own way”, I keep hearing my heart whispering.  But this IS my own way, this is the way I am fighting.  Allowing myself to actually experience my grief for this whole ordeal, once in a while, helps me to feel better (somewhat sometimes), but I have to remember that once my body levels out from one side effect, there could be a new and even more rotten around the corner.   Though that contradicts my whole rigorous philosophy of positive thinking, its the truth and what occurs next will only be revealed by time.  So I’m imagining myself as a Shetland Sheep Dog on the hardest agility obstacle course ever invented.  I must win the competition.  Every time I jump through one hoop,  there is a long dark tunnel and I can only see a twinkle of the light at the end.  FOCUS ON THAT.  Also the next hoop is probably engulfed in flames.  Make it through that hoop too, your fur will grow back, girl.

Thanks to Dan for edging up my buzzcut!  His newly aquired barber skills are well worth every penny.  He went to school in NYC.  TELL ALL YOUR FRIENDS!!!  Thank you JAMES!!!  You’re such a generous, thoughtful artist!  And thank you to ANN and the whole crew at CHEZ  ANN, you are all such wonderful, friendly people.  I will visit with or without hair to say hello.  I can’t wait to go get some wigs with you, Ashlynn…

And thanks to my very own paparazzi, Ashley (and Rachael)!!!!

I’ve included a pick of my BFF Joey who shaved his hair off in my honor on Tuesday morning.  Thanks, love ya buddy!

Thank you to everyone who has made my gradual mowing such an enlightening experience.  I have had so much fun.  This will not be the end of this blog or my writing entries.  Also, you can expect a full photo and blog series of my transformation.  Coming soon.

Being [the] Scene in Panorama

The central New York wind felt so cold without my blonde hair cape flowing around my ears, penetrating each of my hair follicles where my hair had already fallen out.  The empty holes where the keratin had once lived (and will again) may not have been noticeable to the eyes of others, but it was so apparent to me when those gusts blew this weekend. I can barely remember what I felt like to have long, sexy hair now.  Updoing my hair, teasing it, hairsrpaying it (Ultra Extra Hold, please), and sculpting retro designs on the top, sides, and back of my head were always my favorite part of getting ready to go ANYWHERE.  And yes, I am well aware it would take me longer than your average chic to leave the house, but I thoroughly enjoyed this ritualistic behavior.  Now I am exposed. On all fronts…My neck (especially the back of it), my tiny, dainty ears ( at least they aren’t huge dumbo ears), my chin, and my cheek bones that extend into forever on the side of my head.  At what point do I stop the swipe of my blush brush?

I’m a short- haired woman now (soon to be bald).  The way I perceive how the world perceives me has definitely changed.  I have never had short hair in my life, except for my bald baby potato head, that I carried around on my shoulders until age 3.  While wondering what dudes are thinking when I ask them questions now as opposed to when I was rocking my long locks, I have ascertained that they’re actually listening to the words coming out of my mouth, attentive and ready to respond. Subtracting the self-expression and commentary of  hair, I have reduced myself to a primary structure (like the art of the Minimalistic movement of the 1960’s) of the smallest number of colors, shapes, values and textures.  Deducting the silky distraction from my skull somehow made whats inside of it more valuable.  The expressions that I see fit to communicate will now be narrated through make-up, more stylized outfits ( is it possible?), jewelry, and the way I contort my face to convey an idea or a response.  Lest we not forget, sunglasses, hats, scarves, and headbands.  OH And WIGS.

Thanks to all who have been participating….Especially ASHLEY and JAMES!  you guys are so solid!

Gettin’ dumb (and dumber) with the Easter Bunny.

This weekend, what I really want is to eat a big BOWL of candy. But, cancer thrives on sugar posing a huge problem for me, since my love for the Easter holiday has grown considerably over the years due to the disgusting and deliciously steady increase of focus on sugary treats.  (I also LOVE eggs.)  But, being the smart cookie (more sweets, oooweee) that I am, I am choosing to starve my body of refined sugars, probably for the sugarless candy (lame) coated rest of my days, aside from the occasional cheat, not an entire dessert, but maybe just a bite of ice cream, or a hershey kiss.   This is, by far, the hardest and most challenging part of an anti-cancer diet. I’ve always loved sweets!  Chocolate especially. Ugg just typing that delicious word is making my mouth water. “Well try dark chocolate”, you might be thinking.  Its good for you in small doses, but yet does not satisfy my sweetest of sweet teeth.  Since I was a little girl, at Easter time my mom has always spoiled me with a gargantuan supply of Cadbury cream eggs. Sorry Ei, none of that this year. I think we’ll have to find a new, even sweeter tradition. You can still sing the Easter Parade song by Irving Berlin to me with all the frills upon it in the New york city parade (how fitting!). Because I’ve done my research, I now know its about my great city and will gladly join in as opposed to the sarcastic sigh and eye-roll from teenage years passed.

With the need for a good laugh, it was necessary for some haircut hilarity before its too late.  And who better to laugh with then the bucked tooth Easter Bunny?

Easter weekend sugar count:

3 hershey kisses (2 coconut, 1 regular)

1 godiva caramel chocolate piece

a sliver of a Neapolitan Klondike bar

a cream puff pastry homemade by Ben’s gramma Mary

1 weird sugar gummy thing (what a waste!)

1 small chocolate egg

3 Bean Boozled jelly beans: Flavors- 1 booger, 2 pear, 1 baby wipes (SO GROSSSS!)

So much for starving those cancer cells of sugar… Guess I’ll have to do some extra meditating, exercising, writing, and visualizing.

(I’ve included a photo of Ben above- age 6, same ‘do.)

Shorter hair, longer days, longer writings.

Shorter hair, longer days, longer writings.

Wednesday April 20, 2011

Today was my second chemotherapy session.  As I write this, I am entering my chemo schedule into my whackberry calendar, so surprised at myself for not having done this yet (and that I don’t have a damn iphone yet).  While contemplating why I am lacking an intense desire to know when my treatment is over, I realize it is because I wasn’t so sure that there would actually BE a start date and therefore I could not logically foresee an end.  But hair we are. HA.  I reluctantly succumbed to the advice. of my physicians who have been over-stuffed like a thanksgiving turkey from day 1 of medical school with information pertaining to treating or curing patients like me with invasive, life-altering, body modifying surgery along with super caustic, side-effect causing, toxic drugs, both of which I was not supportive of, but the latter I was completely against…until the morning of my last pre-infusion appointment.  I won’t ramble about the details and goings on of what happened that morning, or the phone calls I made and conversations I had with my most important (open-minded) supporters, before delving head first into this empty, unattended swimming pool.  However, this is the decision I made and I told myself  “NO REGRETS”.  And in regards to these procedures and standards of care that I poo-poo above, I realized do, in fact, save lives, only after being presented with the survival rates and percentages I had requested for weeks, because for some reason they are unavailable in to the lay person in books and hold on to your seats, the internet cannot calculate them, unless, of course you have a medical license and therefore access to the Shared Decision Making software program. Breathe. The only regret I do have to report thus far, is that I just had to check mark the “all day event” box in my agenda for the chemotherapy days. BOOOOOOO, super jive.

Thanks to Mother Nature and her first thunder and lightning storm I have heard all spring, I spent an extra three hours at the glorious Roswell Park.  Although you may sense some sarcasm, the day didn’t turn out all that bad.  Although, I thought hospitals were immune to inclement weather affecting them, somehow only the printers at the hospital went haywire.  A bit of an obscure excuse, I thought, for being that behind, but after remembering banging in to work with the swine flu last summer, I bought it.  I was scheduled for three different meetings before my actual infusion was to take place at 12:30 that lasts two and a half hours, leaving plenty of time for (best boyfriend ever) Ben to zoom me to my hair appointment with James, a hop skip, and a jump away, before he had to head to work.  Instead we waited and waited and ate lunch and waited some more and got coffee.  Then my mom’s long time friend who is a chemo nurse there and infused me last time, came to notify us that she had been busted setting a room aside for us, after the whole staff had been warned the day before that in this specific department nurses requesting patients or vice versa was now frowned upon.  She apologized and gave me a hug and I explained that I hoped she wasn’t in too much trouble.  Then she whispered to me that I should run if relinquished to the care of a particular nurse.  Then we waited some more and Sara visited us eager to do a meditation session, but said that she’d be back in a while and when she returned we were still waiting.  She left once again and promised to return.  THEN THEY CALLED US, FINALLY.  Through all that time spent waiting, I pet a therapy dog named Rory, read articles, one of particular interest on the evolution of etsy.com and the brainchild behind it who is now a millionaire, and talked to some strangers, all while we listened to the many different horn sounds and intermittent showtune outbursts of the musical volunteer of the hour, name unknown, unfortunately.

We were directed through the bizarre wind tunnel reception area to my very own chemo room by a wonderful and gentle nurse  that I got along well with, whom I later discovered is a reiki master, not to my surprise.  She started by revealing a sterile, blue  package in a ritualistic fashion onto the table and began unfolding.  Inside there were face masks for all and a yellow gown and gloves for her.  It also came complete with tubing and an eagle talon needle (never touched by germs, hopefully) for accessing my newly placed chest-port which is why this was all a new and very different experience from the last infusion that was given intravenously through the veins in my arm.  My chest port (placed below my dermis above my right breast) when accessed, is directly fed into a catheter through my superior vena cava in my neck to my heart.  This port that I was also much opposed to will supposedly protect my arm from chemical burns and collapsing veins, which would require more plastic surgery (no thanks).  After putting up a fight against this procedure too, I finally gave in.  I have always believed in natural medicine via diet and exercise so being poked, prodded, and cauterized just didn’t appeal to me, can you blame me?  My port will be in place, I’ve  just figured, until approximately the middle of July of 2012, the end of my intravenous chemotherapy injections.  Lucky for me, my hair (that just started visibly parachuting off my scalp TODAY) will start returning from its leave of absence in August of this year. My reiki savvy nurse, not minding any of my questions, started the infusion of the Red Devil (Adriamycin, named after the Adriatic Sea for its red color) burned my chest like hell. It was then that I understood why they must sit with me and manually push the drug in and the use of extreme caution in relation to the health of my arm’s precious veins.

After we got going Sara finally showed up for the remainder of my session. She brought her sweet friend Molly who turned out to be the amazing being who taught Sara how to play the hypnotic meditation chimes.  I was excited for a little R and R after a long day of anticipation. Ben stayed for a while even though he should’ve hightailed it to work.  We were soon guided back to the beach and Wow can Molly play!  Afterward, Ben hit the road and Sara, bless her heart, stayed with me until my favorite sister-in-law appeared.  I had about a half an hour left and had already rescheduled with James for 5:30.  Luckily he had  another opening.
—I am so grateful and surprised daily at how accommodating and absolutely wonderful James has been throughout this super fun, therapeutic project!—

Kitty and I left. Being intoxicated and understandably tuckered out or noticeably v8 deficient, I walked out with a slant in my stagger and went to get a haircut to match

Ashley you’re always there, ready to film/photograph, and in a good mood…thanks girlie.

Edward Scissorhands

One of my all time favorite movies is the 1990 Tim Burton masterpiece Edward Scissorhands starring Johnny Depp, with an outstanding supporting cast (Vincent Price!, Diane West, Alan Arkin) and score (Danny Elfman) to match.  If you haven’t seen it, by God, you’re doing yourself a great injustice.

Not only does James (my stylist and cohort in this “count down to cue ball”) show a striking resemblance to Johnny Depp, today he played the part. Working diligently while spinning me around, he used his shears to  snip and trim every hair like it was the grand opening ribbon cutting ceremony of Amanda’s New Haircut.  His “Vidal Sassoon Precision” technique was applied to accurately mold and perfect my asymmetrical  cut.  James personified the passion that Edward exuded in the film when he clipped and twisted his sharp sword fingers to shape fun designs out of the hair, fur, and leaves of the women, dogs and bushes in that carbon-copy suburban town where Vincent Price invented him.  He made me feel as though I am a sculpture, an  actual living piece of art, which (although I had no idea beforehand), is exactly the goal I was trying to attain through this project. Life itself, and living it in balance, is an art form and like oxygen and water, art is necessary for our survival. But cancer hates Oxygen (exercise more!) and also hates Art, I’ve ascertained (more sculpting, writing, filming, and photographing!!!).  Breath more and Create more.

I have been extremely cautious of partaking in one of my other all time favorites lately— CHEESE!!!  I heard it through the grapevine that chemo and dairy don’t mesh well.  I was slightly bored and less than hungry but I indulged in some last night on a huge platter that I arranged with fruits, spreads, and crackers.  It was so delicious as I ate it but later, it gravely upset my stomach.  As I laid in bed I wondered, did Edward Scissorhands ever cut the cheese?

Thanks to: JAMES,  I LOVE THIS CUT, and Ashlynn and I are becoming new buds…Ashley and Rachael for being there, as usual.

Thanks to CHEMO buds-BEN–love you babe,  KITTY, and SARA and MOLLY for a great meditation session.