Rebel Coo...

i had a joyfully full day today hanging out with my dear friend Isabel and her 10 month old daughter Lucia. we took the subway to an estate in the bronx called Wave Hill. an incredibly beautiful area with rolling hills, voluptuous trees and tamed gardens. we had lunch on a terrace overlooking the hudson and then ventured within the gardens to romp in the grass with Lucia. we were there for hours talking, watching, singing silly songs and making kazoo sounds through stretched grass between my thumbs.

i purchased a set of five onesies for Lucia with the intention of making comfortable little dresses with my fabric scraps from the Rhea Belle clothing. i succeeded and was giddy to give them to her knowing that Isabel would be thrilled. and she was. Lucia, well, putting on clothes isn't her favorite thing. taking her clothes off is pretty easy- it's getting them back on. these are the first three. i have to make an adjustment to the one with the full skirt- it's too tight at the waste to go over her shoulders/arms comfortably. i'm going to open the side and either install a zipper or a fun button.

Isabel came up with the name "Rebel Coo" as we discussed the possibilities of selling the dresses. they are so easy and the concept to offer them through Rebel1in8 flowed from a river of conversations surrounding the ideals and social constructs that both bind and guide young women. i love Lucia. she's an amazing human being already- she's kind, sharing, thoughtful, social and for 10 months old she has a fantastic sense of humor. she gives me a hardy laugh when i make the ugliest faces at her. i mentioned to Isabel that i was very conscious of the number of times i wanted to say "you're so adorable" or "you're so beautiful" when i looked at Lucia. i don't want to be one of those people that defines and praises a young girl for her looks- although i'm referring more to her disposition. i'm convinced that self confidence, integrity and body image starts at a very young age. at 10 months? probably not. but who really knows? at any rate, i do like the idea of making very comfy dresses made only from scraps to crawl and run around in. and when these little dresses economically support Rhea Belle clothing i'll like em' even more! so keep an eye out in my etsy store for Rebel Coo... and select Rhea Belle garments , too.

the color of sun dress.

pure asymmetry embraced by yellow. my all time favorite color. three light cotton comfy low v-neck t-shirts evolved into this dress. one and a half shirts created the top. a third shirt created the bottom portion of the dress while the other half of the second shirt gave birth to two triangles for flare. this dress is great over jeans, leggings, long shorts or even a nice light-airy skirt. it is super comfortable, cool and saucy.

This incredibly comfortable t-shirt embraces asymmetry with the re-invention of the v-neck and cries of rebellion. When I wear the one that I made for myself I feel as if I'm walking down the street with a body covered in beautiful tattoos and piercings- empowered by my decision to go against the grain, upstream and naturally asymmetrical. It is my sharp intention to carve a wide path into the world that makes it clear that these bodies are out there and are here to thrive in glorious fashion and comfort.

See Rhea Belle.

the leah summer dress.

named after my grandmother because the beautifully light and cool floral fabric reminds me of her. again, this dress was created with three light cotton shirts. i just love the draping of a summer cowl neck. i let this one hang off the shoulder at one side (or the other). the fabric can be pulled off of both shoulders for a more glamorous look or simply cooler-refreshing experience. another great thing about my dresses that are made with stretchy-comfy shirts is that they ca be gathered at the waste or pulled down over the hips for a more fitted look. the airy floral fabric for the front and back panels was a delightful find... and i'm not givin' that source up.

See Rhea Belle.

tulips and eggshells.

comment to "The Breastless Debate".

If this conservative, oppressive, misguided society in which I live in can get away with shoving it's mainstream-shallow-ideals of how a woman's body should look in my face then I have the right to shove these unmeasured thoughtful words back.

I don’t know how many times I’ve said to myself- “this wasn’t a political decision- a statement maker”. The decision to walk the earth without a fake breast was a simple one based on my own personal ideologies and tolerances. However, I am wiling to admit that I am living in a “sociosexual” bombarded/guided society and that any decision about my body and how I “display” myself in the world is informed by my reactions to the society in which I live. I make every effort to guide my inner dialogue with clarity and honesty and to make sure there are no conflicts within my language. I don’t say things like “I wanted to look, feel normal” like so many women with implants and prosthesis say. I don’t suggest that I “disposed of my vanity after my mastectomy” like I’ve read from a woman under-going breast reconstruction. There is nothing normal feeling/looking or vanity-free about breast reconstruction or prostheses. Socially- yes these bodies look normal because clothing aids as a buffer. Naked and alone with the truth exposed, the trickery fails. If we can’t all agree on that then someone is kidding themselves. There is a massive refusal to admit the raw truth behind what supports our decisions as we design our bodies and socially conscious selves after a single or bi-lateral mastectomy. If there is indeed some degree of a sociosexual statement to be perceived from the simple act of refusing anything fake in/on my body then so be it. But no one should misguide themselves and believe, not even a mere comforting second, that the decision to have an implant or two or to wear a prosthesis is not PURELY a socially and/or sexually driven act.

We must all thoughtfully, truthfully clarify our language and acknowledge the very real pressures that surround the manipulation of our bodies- physically and socially. Until women can look in the mirror and empower themselves with their own deep truths, without prejudice and judgment, the continued deception of who or what guides our decisions will be the fist that pummels us more deeply into the depths of what seems like, bottomless oppression.

I'm sick of the implication that moving forward without reconstruction or a prosthesis is the inferior solution. The medical arena as well as the government makes sure we have complete access to and financial support for reconstructive surgery. Amoena provides a "better quality of life" and Nearly You makes sure that we can get the perfect $300+ prosthesis and all the swim wear and bras our little hearts desire. But try to find one- JUST ONE single cup bra (besides the one I made!) or garment that embraces the body with one or no breast. Mainstream America's obsession to look normal and/or deny our own mortality by acts of deception forces women who don't buy into these illusions to find resolve in granny shawls, over-sized t-shirts, dart-less garments, speedos and/or diving gear. I had a breast removed. NOT my damn sense of style!

It could not be more blatant that society wants to deny that these single or no-breasted bodies exist in hopes that eventually we will join the masses- "faking it" while in the peaceful, quiet folds of a pretty, soft, cozy big fat pink ribbon.

"Prosthesis offers that empty comfort of 'Nobody will know the difference'. But it is that very difference which I wish to affirm, because I have lived it, and survived it, and wish to share that strength with other women. If we are to translate the silence surrounding breast cancer into language and action against this scourge, then the first step is that women with mastectomies become visible to each other. For silence and invisibility go hand in hand with powerlessness."
Audre Lorde, "The Cancer Journals", 1980
(Chapter III, "Breast Cancer: Power vs. Prosthesis")

and mere observations here.

wrapped, comfy asymmetry.

this t of wrapped brownness started out as two cotton shirts. the short sleeved top had a double layer front that i was able to crop and then cut out a section on the right side to unveil a landscape of ruching. the bottom ruffled edges from the t-shirt were sewn to the new opening to add cohesive, finished edges. the dark brown came from a long sleeved tunic- i'll be working on a garment to utilize the top portion so stay tuned. the ties were made by cutting strips of left over fabric and tying the strips together. the garment can be tied as loosely as desired in the front or back. this is one comfy top!!!


See Rhea Belle.

life. and its price tags.

a dose of reality... $3,000 and up.
sticker shock
choosing a shorter life
love
and
the total

boycott johnson & johnson!!!

"The New York Times reported Wednesday on its Web site that the makers of Aranesp and another anemia drug whose safety has been questioned recently have been PAYING doctors to prescribe their drugs." ... read more about it from JEANNE, a woman who was prescribed the anemia drug, Aranesp ($5,000 per dose). this drug is among those that when prescribed doctors receive a REBATE- "an incentive to prescribe the anemia drugs known as EPO at levels that might increase risks of heart attacks or strokes".

i've searched my bathroom and under-the-sink products seeking stuff made by johnson & johnson. while i did find a few, i took a mental note of them so i won't purchase them again in the future. replacing them with other brands will be so freaking easy. boycotting is the most simple form of positive, successful activism and has the potential to spread like wild fire.

so off you go! check out that medicine cabinet and help put an end to "kick-back" prescription practices.

happy mother's day.

a tribute to moms, mommies, mamas and mothers. one and all.

in honor of the sweetness. the pure essence of mother/child companionship that rises from the most simple acts and moments in a day. in real time, or in memory. happy mother's...

my mom, henrietta

laurie

jeanne

and

dina
.
.
.
just to name a few.

one person. on a misson.

"what we do for ourselves dies with us. what we do for others and the world remains and is immortal." words by Albert Pike

i just purchased dina's book, Take off Your Party Dress.

i read her blog almost daily and have been meaning to purchase this book- the one that i have read/heard nothing but raving, great reviews about. dina is one of those dedicated, informative bloggers that weaves her daily mother/author/activist life in and out of the details that evolve from a cancer diagnosis and it's politics. from post-surgery clothing to treatments to healthcare issues.

dina exemplifies the concept that every one person can create change and make a difference. her, now contagious, grassroots efforts to raise funds for a much needed cancer treatment facility is honorable, to say the least. proceeds from her book ...fund the expansion of a cancer research team at Mount Vernon Cancer Centre, including highly-skilled doctors, research fellows, nurses, data managers and technicians, and to build a dedicated research unit where patients can be treated and monitored. please read more about the "CTRT appeal" here.

thank you, dina, for all that you do.

gathered blossom.

"The French designer Madeleine Vionnet opened her own fashion house in 1912. She devised methods of bias cross cutting during the 1920s using a miniature model. She made popular the halter neck and the cowl neck."

hundreds of cowl necks can be easily discovered in all forms; dress, sleeveless, sweaters, knits and silks. the possibilitis are endless. if you can imagine or want it- it's out there. this timeless fashion element, along with pleats and ruffles, is also popular among breast cancer support resources as a basic and most popularly suggested post-mastectomy layering tool. "...Cardigans and blazers do so by creating an additional layer, but you can also achieve a similar effect with a patterned blouse, scarves and accessories, or a shirt with a draped or cowl neck... These styles can add balance and draw attention away from the chest area."

the above gathered blossom was created by cutting off the bottom two/thirds of a "boat neck" cotton tunic. the bottom piece was then sewn to the neck. the draped fabric can be embraced and pulled down over the chest area or worn closer to the neck to unveil the form-fitting ruching that compliments the chest area. a slightly transparent brown weave was used at the bottom to give an illusion of lightness- as not to pull or burden the crimson bloom above it.

See Rhea Belle.

renovation. revolution.

my friend and rebel comrade at DIY, NOT DIE is illustrating how she is renovating her wardrobe to more gracefully fit her post bi-lateral mastectomy architecture without the use of prostheses. as she describes- she doesn't want to wear Threadless t-shirts all of the time (although i'll have to thank her for turning me on to them!) so she's re-inventing the more tailored garments in her wardrobe. in just several easy steps she walks through the process of removing and replacing existing darts with a more user-friendly placement of them to accommodate her form with comfort. keep an eye on her! she's going to change the world!!!

impinged diligence.

(a contribution to meltdowns)
over a month ago i began experiencing pain in my left shoulder. it came on gradually and as i entered the third or so week of discomfort i could hardly lift my arm out to the side, behind me or across my front without an alarming breath-taking pinch inside my shoulder that would radiate towards the upper third part of my arm. so, finally, i decided to look for an orthopedic specialist. it seems whenever i am bothered with some new, foreign physical discomfort i get annoyingly burdened with a disposition owned and operated by vulnerability and thus, cranky. this state really pisses me off. so i researched and found a couple of orthopedic doctors within my insurance network and set their numbers aside to call in a day or so. you know- to just give it a couple more days to see if the discomfort would go away on it's own. in the meantime it was also time to schedule a couple of appointments that are due- the breast mri and the "how many times can i cancel this one" colonoscopy (i'd like to know the statistics on how many times this procedure is cancelled and re-scheduled). having to tend to any procedure puts way more attention on my physicality than i care to offer. it's disruptive at best. that's why i put off the shoulder thing. and i have yet to schedule the colonoscopy. anyway, in the meantime, even though i'm mystified about my shoulder because i don't recall an "event" that would have caused injury to it and despite the fact that i'm getting a little worried about it i decide to give it a little more time. and besides i've heard folks around me complain of joint aches and pains so i figure "how bad could it be?". "it's probably nothing serious" they say. i am 43- doesn't joint pain come with the territory?

it was during this time that i came across some information that puts me in a tailspin. my friend posted information on her blog about a certain kind of lymphedema and my mind immediately went wandering. i self diagnosed myself, of course. i was now considering the possibility of truncal lymphedema. i had complained twice to my doctor about pain in my under arm area and this mere fact didn't help: lymphedema is an ongoing concern for anyone that has had a mastectomy for it can come on at anytime, even years, after surgery. i freaked out and called my friend right away. after she calmed me down with her rational, peaceful wisdom she asked me if, besides the pain and discomfort in my shoulder, "do you have any swelling?". "um, no" i replied. considering that the swelling is THE main symptom of truncal lymphedema my diagnosis seemed inappropriate. she then guided the conversation to the recent announcement of the metastatic Stage 4 bone cancer diagnoses of Elizabeth Edwards just that day. at the time i thought my friend was changing the topic to get my mind off my shoulder "worries". it wasn't until after i saw a doctor that i realized that, perhaps, she was thinking i should be taking the pain a little more seriously. especially after she learned that i had been dealing with it for weeks and it came on gradually with no specific cause. prior to our conversation i was wondering if i should see my surgeon or an orthopedic specialist. after evaluating my condition we agreed that i'd see a joint doctor first- that i would benefit from an x-ray.

so i make the appointment with an orthopedic specialist and actually go to it. i fill out the usual forms and health/history questionaire and by the time i get in to see the doctor he knows just about everything about me. he's a genuinely nice person with a good direct, matter-of-fact delivery. his first question out of the gate is "how long have you been experiencing this discomfort?" "almost a month" i answer. i am then asked to display examples of what movements my shoulder can tolerate or should i say CAN'T tolerate following the commanded questions "can you do this? and how about this? and this? and how about this? and how far?" "geeze!!! did i mention my shoulder HURTS when i move it?" i wanted ask. but didn't. finally he say's we need an x-ray. so i comply.

i'm sitting in the exam room upon the exam table waiting for the results when the doc returns. instead of heading over to computer to immediately review the x-ray images he sits next to me, sighs, and says "why did you wait so long to come in?" "i thought i'd wait and see if it would go away" i replied with a sort of question mark pitch- feeling like i just answered a trick question- knowing my answer was wrong. and then he continued to slather on a bountiful load of reality. "you're not like most people who can sort of dismiss or tolerate joint pain. an ache here. an ache there. typical of getting older or being athletic... and people around you might think it's helpful to say that everyone experiences some joint pain..." where the hell is this going, i wonder. and no sooner had i asked myself that question he laid out the answer. "you've had breast cancer. twice. the common place for metastatic cancer to occur is in the bones. any joint or bone pain should be taken seriously and immediately checked out. ok?"..."of course" i responded- as if i'd thought about this already and added it to the load of worries and possibilities and suddenly resenting "most" people with an embarrassing passion. with that he stood and invited me over to the computer. the moment the image came up he exclaims "there's no sign of cancer or bone abnormalities". relieved of a worry that i originally wasn't worrying about i half jokingly added "that's great, i guess i'll go now" implying that now, since it wasn't cancer i really didn't give a shit what was going on with my shoulder. and stupidly, i meant it.

what i do have is impingement syndrome in my left shoulder and i'm OVER the idea of comparing the degree of seriousness of any common ailment to cancer. i can't afford to be careless with recovery- i'm already in the early stages of "frozen shoulder" caused by limited mobility. this damn condition is painful and debilitating and gets worse before it gets better, apparently. of course i'm a truck load of grateful because i don't have bone metastasis. but should i be grateful for my shoulder impingement? i am partaking in physical therapy, chiropractic services and, for the first time, acupuncture. the condition was most likely brought on by an act of over exertion and bad posture (rounded shoulder) causing poor bone alignment.

some advice for "most people": not only is my body and it's history different from yours, so are my fears. your attempts to comfort me by minimizing or simplifying my physical complaints and concerns only makes me feel like a hypochondriac and this causes me to pretend to be one of you. the truth is- if i'm expressing discomfort or "complaining" out loud- most likely i am reaching out to you in an effort to share or expose my fears. please help me move past the fear and embrace rational action, to move forward with appropriate diligence to take care of my body without judgment or dangerous comforting.

diligence and fear are companions that live within my inner dialogue. after my first breast cancer diagnoses in 2000 i reached out to a friend by expressing fear of my first mammogram following my lumpectomy. i'm not sure if she was just trying to comfort me or she believed this to be true but she said "cancer rarely comes back. don't worry!" i'm not sure how i responded. it was the last time for a long time that i outwardly expressed fear. you see, my reality was different. i had spent hours reading about cancer cells and their growth rates. my friend apparently hadn't seen the bold graphic titled "cancer cell growth rate 100 days to 11 years (age of average palpable tumor)" on page 265 of Dr. Susan Love's Breast Book. and she obviously wasn't aware of the dueling "theories on the natural history of breast cancer". little did my friend know that too much information opens the minds door to a vast landscape of possibilities. i understood reality differently to say the least. but my expectations for her to grasp my needs were unfair.

it's hard to level the rocky landscape of worry. and even more difficult is understanding the necessary comradeship between diligence and fear. it's an ongoing process as i'll dutifully tend to annual appointments that require me to maneuver skillfully through each of them. but in between those appointments i can only remind myself that there’s no such thing as ‘an installment plan...’.

silicone. silk. glass. dreams.

add Wednesday to this list.

i dream of
demystifying that
deceitful
seductive
oppressive
mound of fake flesh.
to puncture it.
expose its powerlessness.
and watch the
stinking pink goo
flow
like lies
off the guilty tongue
of the kidnapper.
the killer even
of dignity.

2 stories. and waiting.

last monday night (day of the mri) or should i say tuesday morning i find myself still chasing sleep at 2:30 am. this was, most likely, due to the two cups of coffee i had consumed after dinner combined with a little "wait n'worry" anxiety. i swear i don't know why i do either. so after all of our viewable six chanels go into info-mercial overdrive i decide to see what's on channel 13, a pbs channel. by the texture and format of the program i conclude that it's a documentary film. i'm immediately relieved that i have found something that will consume the time that sleep refuses to embrace. "A Ring of their Own" becomes an engaging story of Ann-Marie Saccurato and Angel Bovee, two young lesbian boxers in a male driven arena. the film unveils a path of determination and passions so driven that it propels these women through personal and social struggles. their mental and physical commitment to nurture their passion for the sport of boxing is bold and- dare i say it because it sounds so cheesy- inspirational and get-off-my-arse moving. the film works it's way up to a particular fight between WBC light-weight world champion Saccurato and two-time world champion Jelena Mrdjenovich in Mrdjenovich’s hometown of Edmonton, Canada.. aside from seeing Laila Ali on "Dancing with the stars" this was my introduction to women's boxing and it's still unclear if i'll be able to call myself an avid fan anytime in the near future but i'm not ruling it out either. we can keep an eye on Angel and Ann-Marie's progress here.

so with sleep still having no interest in me at all, i waited to see what film would follow that edge-of-your-seat-10-round fight between Ann Marie and Jelena. now, i'm notorious for coincidentally picking up the right book to read or going to see just the right movie that seems to be a perfect psychological fit for my mood. and i'm always amazed when i look up just in time to witness the glide of a single bird in an otherwise empty sky. it's those moments that are just meant to intersect. well, the next film that came on was the perfect companion to "A ring of Their Own" and simply right for my 'waiting for mri results" mind. stories about life. real living and moving forward despite anything. just moving forward into the days with nothing but everything alloted to you.

what reeled next was "So Much So Fast", a film about Stephen Heywood, a 29 year old man diagnosed with ALS. this documentary film compresses a five year witness to Stephen and his army of family and friends. after Stephen is diagnosed the race is on- to live life and find, discover, and ambitiously explore the possibilities for a cure. unlike "A Ring of Their Own" i knew how this story would inevitabley end. having started reading brain hell an ongoing four year old blog written by a man living with ALS, i know that there is, still, no cure. however, what i didn't know was how far into Stephen's fatal prognosis the film would go.

it wasn't the cliche reference of the 'fight' in the first film nor the potentially simplistic implication of a 'fight for life' illusion that can sufocate the true heroics of the second film that claimed my viewing of these two documentaries as seredepitous. in both films, it was, the presence of raw, tangible necessity to move forward despite and/or in the face of realities.

some time during these films this thought occured to me; while either anxiously waiting the outcome of Ann-Marie's Edmonton fight or witnessing Stephen's oncoming reality i realized that even though i did not yet have knowledge of their outcomes- the end of both stories already existed. if i were to turn the television off during either film the outcome would not change- i simply would not know it. in this weird cerebral process i realized that the same held true for my mri results- that as i lay there in bed the reality of the results already existed. even if the diagnostic report was not yet on some desk in the "call patient" pile the results, in fact, existed in my body- either i have cancer again or i don't- one or the other is already a reality simply waiting to be unveiled. unchangeable. no one just "gets" cancer. it is present for a long while before it can actually be observed and diagnosed as a seeable threat. i didn't know what to do with this concept. if i took the 'it doesn't matter- it is what is so i might as well move forward with a clean bill of health' attitude i risked being deceived. but if i worried and imagined all the possible cell stages and treatments i would be a miserable human being to be with only to risk wasting valuable time after discovering the coast is actually clear to head back into the hills of illusionville. in either case i did find unusual surrendered comfort knowing that there was absolutely nothing i could do to stop whatever reality was mine. and in either case i will, like most of us, continue to live in the "systemic denial of approaching reality" whether that be cancer or really really old age.

as of monday 4.16.07:
mri results are in... "FINE". no evidence of cancer.

secrets. truths. and for the record.

shortly after my first mammogram several years ago following my mastectomy i began to explore the words "prophylactic mastectomy". my second diagnoses was considered a local reoccurrence with non-invasive carcinomas found near the chest wall. in case you've missed my medical history 101 from previous post- my first DCIS diagnoses was followed by a lumpectomy and radiation treatments. at the time the lumpectomy seemed like a refreshing idea compared to a mastectomy which was posed only as an unnecessary extreme option by two surgeons. in my mind a mastectomy represented an even closer look at my mortality. and to this day i have no idea why i agreed to radiation treatments. the idea of radiating my breast to save it or my life seemed absurd, even then. i can understand radiation treatments for organs of the body that have a precious mechanical function involving life support and can't be removed. i remember saying to one of my radiologist that i was considering moving forward without radiation and she replied "but it's your life we're talking about." if preventing a re-occurrence and saving my life is truly the mission of the medical world i would have had a mastectomy- the first time around. it is that simple.

i sometimes wonder if those cells that were found in breast tissue close to the chest wall, yes even after those 37 hardy radiation treatments, had a chance to travel; infiltrating neighboring lymph nodes or sneak into the bones during those three years that my breast remained- acting as a conduit. waiting only to unveil themselves in future years during their more advanced fruitful cellular life cycle. only time will tell.

so here i am tonight thinking about the mri i had this afternoon on my left, remaining breast. the breast that has become a psychological ticking time-bomb. since my mastectomy an mri is recommended once a year 6 months after my mammogram. i missed it last year (insurance issues) so this was my second. i was an emotional wreck this morning and was wondering why i even made the appointment. i mean, after all, the mammogram and ultra-sound unveiled nothing suspicious. for the love of pudding why would i want to open the doors for potentially crappy results. i mean, the longer i put off this procedure the longer i can just worry every now and then or wonder if the coast is clear to move forward in life like most people free from cancer. la-dee-da. i know, i know- i'm suppose to feel better just KNOWING so the mri should be a relief. but the thing is it's not a 50-50 thing going in. my chances are higher than the average bear and it's these odds that were pushing me to cancel the appointment. i was starting to convince myself that a little worry was worth NOT knowing. then i imagined how i'd feel after canceling the appointment. irrational and irresponsible came to mind followed by a truck load of what that worry would feel like all over again. and i know that as long as i have this breast i should take advantage of all possible screening techniques. so i brushed my damn teeth, pulled my hair back, slipped on my "boots with attitude" and put on my best "let's get this shit over with" face and walked out the door. i departed from our loft in brooklyn 15 minutes later than i had planned but still hoping to arrive cool, calm and collected. as i ascended the subway stairs on an upper east side street and back into the cool air under blue sky and sunshine i realized i was already five minutes late for my appointment with 4 long city blocks to walk ahead of me. darn! but then i think "here's my out". so i pull out the ol' celly and call the mri office. "hi, this is Jacqueline and i have a 2:30 appointment. well, i really underestimated my travel time and won't be there for another 10-15 minutes. i should probably reschedule, right?" and then came the strangely accommodating reply "oh, no. you're doing just fine. we'll see you when you get here". CRAP! i arrived hot-n-stinky, red-faced and out of breath. but i arrived.

so long story even longer i survived the mri with only minor details such as the fountain of blood that occurred when the technician was inserting the iv line into the bend of my arm for the mri contrast agent and she either uncapped too soon or didn't cap soon enough while singing "oh dat's a gude vein... a gude vein" as i witnessed a fair amount of my very own sweet red juices spurt out and penetrate the nice white wee wee pad she had carefully laid out next to me. "please, oh please let this be the worse thing that comes of all this" i sang in my head. and then there's the excruciating pain in my recently diagnosed impinged shoulder (oh, i'm gonna post about that at a later date- so stay tuned) that i had to tolerate because i had to have my arms stretched out above my head for over 30 oh-for-the-love-of-get-me-outa-here minutes.

so. with all of that accomplished and unleashed i wanted to take this opportunity to state- FORTHE RECORD- that in advance of the results of this mri that i have already discussed a prophylactic single mastectomy with my physician and i have contacted a surgeon to set up a meeting to discuss it further. i just want it to be known that i have empowered myself with this option. that i am setting up the game rules from now on and that i will not wait until cancer is invading my body before i take REAL preventive action to keep breast cancer out of my life and not simply at bay... or more honestly, i am seriously, seriously considering it.

so
just for the record.
before the results are in.
let that be known.

manifesto. unleashed.

Rebel1in8 was founded in 2004 following my second breast cancer diagnosis since the age of thirty-six. Rebel1in8 has evolved into a personal mission to inform and nurture not just real breast cancer awareness but social awareness through shared vital resources, unveiled stories of truth and the deconstruction of conventions that lie within the post diagnosis world.

Rebel1in8 is not about cancer or statistics. Rebel1in8 is about moving forward well informed and guided by your own personal idealogies that surround your body and your future- from diagnosis to re-entering the world transformed and with a deep understanding of what it means to be challenged by a disease with mythological, social/political and real powers. This information is not just for the woman who has received a cancer diagnosis. These resources are for every woman, of any age, who may face a diagnoses in her future or may find herself supporting a relative or friend during this arduous journey. By unveiling the fear and unfamiliar terrain this information can become the compass towards healing, peace and dignity.

Rebel1in8 brings strength and awareness together by embracing thoughtful, diabolical and conceptual craftiness. It's not about feminism or femininity. It's not about trends or beauty. It's about having integrity and fearless attitude... with style.

Details of the founder:
My name is Jacqueline Skaggs, the sole proprietor of Rebel1in8. I am an artist born in beautiful Indiana and currently living in Brooklyn, NY. I am a committed crusader out to rally for dignity in a post-mastectomy world of oppressive conventions that lie deep in the folds of a pink satin ribbon. Am I out to enlist others? You bet. The ROiE mission involves the following:

1. Design and build a website offering resources and voices that provide information vital to surviving breast cancer with dignity and empowerment.

2. Act as a conduit to distribute these resources to those who may benefit from it.

3. Design, create and renovate clothing that inspires women to embrace their bodies and their right to be in the world with dignity by their own ideologies following the aftermath of a breast cancer diagnoses. It is time to bring our transformed bodies and how we clothe them out of the dark ages. It is my goal to bring post mastectomy clothing and lingerie out of the "closets" of hospital boutiques, out from "behind the counters" and free from "by appointment only" specialty stores and into mainstream venues. Rhea Belle garments are currently available in the Rhea Belle apparel store.

4. Guide breast cancer awareness away from PINK, the save our "boobs" mentality and exploitation of women through the farce that is "cause marketing" .

5. Provide an invitation to everyone to become aware and witness the subculture of breast cancer and the fundamental flaws that lie deep within it's language and empty promises.

6. Continue to create and sell cool/fun jewelry to support the above mission while inspiring a rebellion against the social and political side effects of this epidemic.

art. a history.

in the summer of '98 i settled into a 750 sq.ft. studio in an industrial warehouse in baltimore after completing an mfa in painting. to this day i'm still trying to convince myself of it's practicality (the degree, that is) every time i make that monthly student loan payment. i must admit, however, if anything, those two years unveiled irreplaceable friendships- so that's my consolation. during my graduate studies i was irresistibly seduced by paint/painting like never before. i had just finished a body of work that explored minimalism and illuminism with a conceptual impetus. using the simplistic design of the 'mary jane' candy wrapper, with that beautiful red strip disecting it's yellow ground, mary jane was re-invented with oil paint on traditional prepared wood supports with a concoction of marble dust and hide glue. 'mary jane' met William Turner and embraced a Cindy Sherman persona as the wrapper was presented in various colors and it's surface carefully reflected it's own light. "mary jane in plaid at dusk" reveals a perfectly striped panel that settles itself into the light of evening. "mary jane at midnight" glows in deep blue with a nearly black stripe. and in "in rose with dots" her stripe is over-layed with a river of polka-dots that can only be seen at a certain angle on a panel of deep red.

before grad school my work embraced the "picture making" game that included works like "a bodice front" and paintings on found/discarded pennies. reflections on religion, family, landscape, nostalgia and still lives embellished the 3/4" surface of pennies that i had found on sidewalks over the years. a black and white portrait rests on a 1951 wheat penny. the portrait is of my mother when she was three years old. in the original photo she is standing next to a bird bath with her brother on the other side of the bath. the title, "kisses and ghosts" comes from a statement i had read from a young child. a group of children were asked what they feared most. this title was one on the answers. on a 1944 penny a serene pastoral landscape is titled "through carelessness he loses his cow". words randomly pulled from the pages of "The I Ching or Book of Changes". a simple painting of a baseball is called "four witches stand". and then there's "venus dreams"

if you haven't noticed yet, the titles of my works are integral to my practice. words have always been a part of the works conceptual and experiential duties. which is clearly explored in the works that i have been courting since that summer in 1998. after several post-grad paintings i had become suspicious of the works aesthetics. aside from their conceptual/unseen characteristics and though they were burdened in layers and layers of glazing, the paintings appeared too simple, too minimal, too obvious and most of all - too much about their surface.

as usual i stopped painting for a while and turned to books. i am not prolific in the studio. i never have been. i'm not one to "work it out" with materials or make work for the sake of making work. there's enough garbage in the world. i turned to poetry and the tattered art history books that i have dragged around for over twenty years. the big fat separated-at-the-spine kind of books. as pure exercise i began borrowing images from various resources with the intention of creating my own narratives with them. i wanted/needed a break from the practice of painting. using a pounce wheel i transferred figures, birds, moths, structures and forms from the pages of these books. each image was made up of a string of small, punctured dots. while pouncing the stars from a Jasper Johns painting my eyes were guided to the small periods buried within the text on the page. i began mapping those, as well. and soon, within days, my transfers consisted of only the carefully mapped, charted periods. "The Paradiso, by Dante Alighieri" was reborn. (this work was charted from a 1904 edition that was given to me as a birthday gift by my husband during our first year of marriage.)

now. from poems to art criticism to artist biographies to newspaper articles to "the sexual life of catherin m." my work explores the moments between the words. between the thoughts. at the breath. a pattern of pauses. a pre-destined design, transformed.

exposed. for the first time in NY.

the above image: #2 from a set of 4 drawings.
"For Mr. Reinhardt, Opals, Dreams, Lines and Hearts"
mapped periods from "Art as Art", Art in Theory, pp. 806-809, graphite powder and ink on paper.

vanity.

it can not be killed
or hidden away
it's a lover
in your dreams
and accused
demon
by day.

as i stepped into our shower for the first time following the mastectomy, i was careful not to bump or snag the drains that dangled and slithered under the flesh of my chest wall- (those magical tubes that created a tunnel uniting the mysterious inside with the out). i remember attempting to methodically sort my thoughts: focus. first things first. cleanse. shampoo. pain. lifting arms too high. careful. (chorus: acknowledge it for what it is. you're alive. no chemo. don't cry. don't get emotional about it. don't look down. don't think about how your body use to look.) hum a little tune- that might help distract. what's for lunch? when will i be able to paint the closet door and the kitchen walls? should i condition? no it's too painful to lift my arms again. (chorus: acknowledge it for what it is. you're alive. no chemo. don't cry. don't get emotional about it. don't look down. don't think about how your body use to look.) exfoliate. should i shave my legs? no. too much work. (chorus: acknowledge it for what it is. you're alive. no chemo. don't cry. don't get emotional about it. don't look down. don't think about how your body use to look.) nothing left to do. and there's still hot water. looking down. rolling the edges of the bandages to test their endurance. discovering the bony rise and fall of my now visible ribs, which defiantly give form through my skin on the right side. and here's where all hell breaks loose. because in that small space of a shower a mountainous avalanche of issues break through the chorus and the gates of focus fail.

in the solitude of that shower i freaked out. overwhelmed with fear and angered by vanity and the politics that would surround this new body. i wanted to separate it all before this shower was over. but i knew that wasn't going to happen. the water was starting to get cold. i accepted that there was some self-pity in there somewhere. but one thing was for sure. at the base of the avalanche aftermath lay a truth. the truth being that my life was perhaps lengthened a bit by having a breast that carried mutating cells that had not yet spread to other parts of my body had been removed. and while my personal ideologies assist in shaping my vanity i would still have to socially reckon with my decision to not have reconstructive surgery. when i finally turned the water off i realized i was going to have to carefully dig through all of the layers. just me. my vanity. and my truth.

a bodice front.

photo: oil painting on vintage paperclip box (cardboard), metal clamp, sewing pattern and wire, 1992

history prevails. art and life come full circle.
i retrieved this old scuplture/painitng from a box in our storage loft. i am always amazed at how well it survives the many moves and mis-handling. it rolls around in the box with the clamp attached. i made this piece shortly after my undergraduate studies (1992-ish) and in one of my first studios outside of academia. i was utilizing sewing patterns independent of actually using them for sewing. i have been thinking about this piece a lot lately as i have witnessed the ongoing various textures of offensive, irresponsible media messages regarding, not only the BREAST cancer campaign, but the centuries old strategy of using the female body for exploitation, whether admittedly or not, in any advertising.

example 1.
example 2.
example 3.
example 4.
example 5.
etc. etc. etc.

when i install this work for display i am always careful to consider the conceptual implications spoken by the tension between the wire and the tissue paper. in the past i have pulled the wire upwards so tightly that the tissue nearly tears- implying the unbearable weight of the clamp and its content. tonight, however, i chose to mysticize the strength of the tissue over the weight of the clamp, the box and its image, leaving the bodice unaffected.

REAL awareness. and truths.

"When I walked into the doctor's office, I was really rather pleased with myself, all things considered, pleased with the way I felt, with my own flair, with my own style. The doctor's nurse, a charmingly bright and steady woman of about my own age who had always given me a feeling of quiet no-non-sense support on my other visits, called me into the examining room. On the way, she asked me how I was feeling.
"Pretty good," I said, half-expecting her to make some comment about how good I looked.
"You're not wearing a prosthesis," she said, a little anxiously, and not at all like a question.
"No," I said, thrown off my guard for a minute. "It really doesn't feel right," referring to the lambswool puff given to me by the Reach For Recovery volunteer in the hospital.
Usually supportive and understanding, the nurse now looked at me urgently and disapprovingly as she told me that even if it didn't look exactly right it was "better than nothing," and that as soon as my stitches were out I could be fitted for a "real form."
"You will feel so much better with it on," she said. "And besides, we really like you to wear something, at least when you come in. Otherwise it's bad for the morale of the office."
I could hardly believe my ears! I was too outraged to speak then, but this was to be only the first assault on my right to define and to claim my own body."

the above words are reference to October, 1978 shortly following her mastectomy and is an excerpt from page 60 of "The Cancer Journals" (Special Edition), 1980, by Audre Lorde

and 22 years later.
May 2000.


and 26 years later.
March 2004.

and 29 years later on a Wednesday.
April 2007.

and in the spring.
April 2007.

and in the Fall.
September 2007.


and 30 years later in the summer.
August 2008.

tolerant, team rebels.

a blast?
well, i'll be honest... these "awareness" walks are never a blast for me. they are a mixed bag of joy- because i'm there amongst the living- but also with restrained, throat stiffening sadness- because the "in memory" tags surround you.

and then there's the side of me that really didn't want to be there- just get me out of "cancerland". at one point i even suggested that we cut out of the park and get breakfast. g immediately started looking for a pathway out. but it seemed too much like cheating. and i couldn't rationalize or intellectualize why i wanted to escape so we just kept walking. but escape is what i wanted. instead i clammed up. got cranky. and entered a real funk that i am just starting to come out of.

and then there was my t-shirt. the one in the photograph. the one i 'whipped up' the night before because i refused to wear the bright pink, too big- "i would never wear this t-shirt on any other day of the year so why wear it now" race t-shirt. but i must say i have never felt so out of place as i did in the sea of over 25,000 walkers this day. and despite my "rebel" reputation i just could not muster the kahoonas to rise above the feeling of defeat and thinking "why didn't i just wear the big ugly shirt?". then i was frustrated that i had become so self-conscious about it. so arrogant to think that it mattered. but sh*t! it did.

it matters that on this particular day we march against a disease that mutilates our bodies, chisels at our souls a bit, and often challenges our spirituality and body politics. and then, when the disease is gone we re-invent ourselves. we rebuild. we thoughtfully design ourselves to re-enter the world in a form that we can be proud of. but, yet on this day of awareness. this day of celebration. we veil ourselves in corporate sponsorship.

i'd like to have blast at one of these walks... sing a fight song at the top of my lungs... hear marching bands at the mile markers... see women proud to be in their beautiful new bodies, in their own clothes, in their own individuality... on this day... of all days.

ps. thanks for not wearing one, g.
originally posted here

basics.

it was a few months or so following my mastectomy (january 2004) when i called the hospital "mastectomy boutique" where i had my surgery. i had a no-brainer question (or so i thought) but wanted to make sure my needs could be met before i ventured up to the upper-east side of manhattan from brooklyn. i was ready to acknowledge the quandaries ahead of me. not simply "how will i clothe this body"- but how will i embrace the beauty of my lovely remaining left breast without physically burdening the tender-too sensitive-everything-feels-like-steel-wool-against-my skin-because-of-nerve-damage right side? so i dialed the number to the boutique and the conversation went something like this:

boutique rep: hello.
me: hi. i'm calling to make sure that you carry post-mastectomy bras?
br: um. yes. (sounding confused by my question) that's what we are- a 'post-mastectomy boutique'. did you have your surgery here and how long ago was it? single or bi-lateral?
me: i had surgery in january and i had a single right-side mastect... (i was cut off here)
br: do you already have your prosthesis?
me: oh. what?
br: do you already have a prosthesis? have you been fitted for one?
me: no. i won't be wearing or getting a prosthesis...
br: what? what is it that you need?
me: i'm looking for a single cup bra. you have those right?
br: why would you want that?! NO. we don't carry anything like that.
me: oh. um. thanks. (stunned, embarrassed. jaw now open. feeling naive in a new world that i could not relate to at all)
end of phone call.

in lieu of symmetry.

Meet Rhea Belle. A single right-side mastectomy mannequin. Rhea is entering the world free of fear and self-conscious thorns. In lieu of rules and traditional solutions Rhea plans to embrace her form through thoughtfully designed fashions.

Several months after my right-side mastectomy in January of 2004 and proudly moving forward without reconstruction or a prosthesis I was forced to evaluate my (then) existing wardrobe. It became crystal clear as I dressed that the clothes in my closet were no longer appropriate for my body. Every dawn unveiled a psychological and political discourse within myself to either embrace my new architecture or camouflage it. Philosophically I new the answer. However, socially it was not always an easy thing to do.

As my favorite dresses and blouses fell over my form and rested upon the new landscape the emptiness on the right side was always awkward and apparent- like putting on a pair of three legged pants. I gave up buying anything with darts and began playing with knit t-shirts and sweaters using various texture, pattern and fabric techniques to create visual balance. On the days I wanted to embrace my natural form I'd wear one of my creations. On "camouflage" days I use to swing a silk scarf around my neck to drape and fill the flat terrain.

Occasionally I find garments that work perfectly as they are- asymmetrical designs, cowl necks, blouses with attached scarves, draping and pleated/ruffly fronts will balance out the asymmetry. However, cool ones (and not as in temperature) are few and far between and a huge time investment is needed to procure an up-to-date everyday wardrobe. Eventually I began to examine clothing in a new way. Instead of accepting clothes the way they are on the rack I'll immediately start "renovating" them in my mind to work with my body. If I can technically handle the renovation I buy it- if the price is right that is (on occasion some garments become sacrifices to the cause). A pull-over angora sweater has become an empowered asymmetrical cardigan, the buttons on a blouse have found a new asymmetrical center, ruffles on a blouse have been united to one side while the right side was de-darted, ruching creates balance and "scarfin' it" has taken on a whole new meaning for a black cotton tunic with a draping scarf stitched to it. Rhea Belle garments create visual balance and re-create symmetry. There are many sides to comfort and every day is different as my transformed body gracefully invites buttons, zippers or gathered falling fabrics within new terrain. Necessity is the mother of invention. Wearing garments that are created for, honor and embrace my unique architecture is not only empowering it is necessary and crucial to social acclimation in my post mastectomy world.

"The design and marketing of items of wear for one-breasted women is only a question of time, and we who are now designing and wearing our own asymmetrical patterns and New Landscape jewelry are certainly in the vanguard of a new fashion!"
Audre Lorde, "The Cancer Journals", 1980

See Rhea Belle.

Tribute to Audre Lorde, poet and warrior. (1934-1992)

Audre Lorde- Black lesbian feminist warrior mother poet essayist educator activist- died on November 17, 1992 after a fourteen-year struggle with cancer.

"I have come to believe over and over again that what is most important to me must be spoken, made verbal and shared, even at the risk of having it bruised or misunderstood. That the speaking profits me, beyond any other effect... for it is not difference which immobilizes us, but silence"
Audre Lorde, "The Transformation of Silence into Language and Action"

"For me, the primary challenge at the core of mastectomy was the stark look at my own mortality. Hinged upon the fear of a life-threatening cancer. This event called upon me to re-examine the quality and texture of my entire life, its priorities and commitments, as well as the possible alterations that might be required in the light of that re-examination. I had already faced my own death, whether or not I acknowledged it, and i needed now to develop that strength which survival had given me.

Prosthesis offers that empty comfort of "Nobody will know the difference". But it is that very difference which I wish to affirm, because I have lived it, and survived it, and wish to share that strength with other women. If we are to translate the silence surrounding breast cancer into language and action against this scourge, then the first step is that women with mastectomies become visible to each other. For silence and invisibility go hand in hand with powerlessness."
Audre Lorde, "The Cancer Journals",1980
(Chapter III, "Breast Cancer: Power vs. Prosthesis")

if i could turn
her words into air
for all women
facing breast cancer
to breath in,
to even consider
their fresh crisp truths
i would.

J.S.
photograph by Jean Weisinger

lucky stars and crescent moons.

"...now if you have a mastectomy- you will get an implant. NO woman leaves my o.r. without reconstruction... (an implant)".

this is a quote from my (female) surgeon in may of 2000 following my diagnosis of ductal carcinoma in-situ/non-invasive breast cancer. she suggested that we move forward with conservative breast surgery (lumpectomy) followed by radiation treatments instead of a mastectomy. she explained that a mastectomy was, in her opinion, an "extreme" alternative in my situation. she left behind a beautiful post-lumpectomy crescent moon shaped scar in the upper/outer quadrant of my right breast. the radiation treatments that followed left behind a shrunken, unnaturally firm breast supported by permanently tender and fragile muscle and ribs.

however, i thank my lucky stars that the unavoidable mastectomy that eventually occurred in my life came four years later- at the hands of another surgeon. an incredible supportive surgeon who removed my moon and pulled my skin tightly and beautifully against my core for me as to say "now and forever i will live within this vessel AS IT IS".

unstirred, unsipped sweetness.

on a saturday
afternoon in august
i was dragged out
and into
a warm blue breeze
saved
from thoughts of
an unplanted garden
unstrung beads
an empty frig
an unfinished painting
a long list of everything
and nothing
misses
strikes
have not
and never will
and that f**king chopped down symmetry
still standing
waiting to be watered.


for gcs

reflections of a historical mystery.

truth is the impetus for the presence of these words. an honest insight into insecurity and/or a curious battle with philosophy and social politics. either way, i am certain that with the eviction of these thoughts from my head i shall be set free. i am certain...

for forty two years (real close to forty three) i have walked the earth with a body designed by nature. two years ago it was re-designed by it as well. in my mind my body is still normal; i had cancer in my right breast, therefore, the breast was removed, therefore, i no longer have cancer or my right breast. this newly designed vessel that i experience life through- and in- serves me beautifully.

then why are there weekday mornings when i pile my favorite weekend blouses and snug t-shirts on the bed after pulling them on and then off after critically analyzing whether or not the fabric is too telling on the right side. too empty. and finally settling for the long sleeved one that is usually too hot for the season but "puffy" enough in the front to not show off anything... at all. and then there's the scarf-o'flauge (see "scarfless in brooklyn" a few posts back for that story).

i know in my heart that breast reconstruction wasn't for me. geeze- i freaked out when i found out that the surgeon who performed my lumpectomy five years ago chose to place three 1/8" long metal staples onto breast tissue and around the perimeter of the excision in order to see the site better on future mammograms. if the thought of these small pieces of metal under my skin bothered me- i can imagine what a mound of anything that would be literally shoved, crammed and forced under my brutally stretched radiated muscle and skin would have done to my personal psychology. and i know in my heart that the $300 prosthesis that lives in my drawer does more damage than good to my integrity. and all of this to avoid looking normal. or would it be- all of this to look normal?

so. why do my words not reflect my feelings when i'm preparing to step out into the world. well, i'm human for one. and live in a world guided, or mis-guided by misunderstood illusions of beauty. so if it takes daily affirmations like "i'm no clown for your enatainment" (in a joe pesci from 'goodfellas' kind of voice) to assimilate or even protect myself from the world around me- then so be it. at the end of the day or more profoundly- at the end of this journey- it's not about what my body looks like- it's how i've taken care of it and respected it. and best of all that i guide it through the days on my own terms.

history of a rebel.

2002: i found this bottlecap in the street here in brooklyn in front of our apartment building. smashed and with its fancy scalloped edges i drilled a hole in it to make this necklace for gcs on her birthday. i chose to use the clear glass beads that had broken off of one of my favorite antique czech glass necklaces. upon stringing i realized that i had one less clear bead than i needed for its symmetry. i fretted not even a moment and reached for a round amber bead to complete the strand.

cut to two years later:
i was brain storming for ways to raise money to pay my medical bills upon the news of a bc diagnoses when uninsured. i had applied for financial aid at the hospital that i was planning to have surgery and we were waiting to find out just how much the surgery and possible adjuct therapy was going to cost. anyway, i was in g's bedroom chatting while she was cleaning, putting away laundry or dressing- i don't even remember really but we were chatting and i was going through her jewelry and i came across this necklace.

cut to later that day:
it came to me that i could start making jewelry to generate some extra cash flow and i would start with these "rebel" necklaces. there was something charmimgly spontaneous about it's style; tender in it's crafty, "outsiderish/found objectishness". i never imagined that i'd make jewelry. i'm a painter, not a jeweler. in order to bring meaning to my mission i decided that the necklaces would have eight beads on them- with one bead of the eight being a pink bead to represent the 2004 statistic "one in eight women will be diagnosed with breast cancer". i ran next door to g's to share the idea and to borrow the necklace as a prototype. it was then that i realized that the beading on the necklace, that i had made two years prior, had 7 clear glass beads and 1 amber. rebel1in8 was born in 2002. i caught up with it in 2004.

re-invention.

it was the first summer after my mastectomy and i soon realized that the luxary of wearing layers was disappearing. One night in that twilight between wake and sleep i decided, without evaluation, to have a henna drawing placed upon the landscape where my breast had once been. it wasn't an effort to veil the history... but an effort to reinvent my perspective, language and relationship with this fragile yet powerful piece of body realestate.

the weight of quiet. the possibilities of night...

this post is a gift to co-survivors... a tribute to their role and their instinctual healing powers when the going gets tough.

nights became difficult when I returned home following the mastectomy. with the apartment quite and dark i would become acutely aware of my physical existance. i'd acknowledge the drains entering my flesh, the flatness and numbness when i searched the new landscape. the sensation that i was literally in the wrong body. living someone elses life. aware that i was embarking on perhaps an exhausting journey of re-invention: of my self, my body image, my perspective, my identity, my faith. inevitably this overwhelming mental journey would turn into an emotional landslide and i would weep. i had started to sleep with my walkman in hopes of distraction. one night my twin lay next to me as david gray sang sweetly and privately to me from a "white ladder". though i can be mesmerized by him most of the time- my nightly evaluations were loud and persistant. i wept through the tunes. and the next thing i knew she had reached for my hand to provide comfort. she didn't say anything. just cried with me under the weight of quiet and the possibilities of night.

winter flowers.

I simply do not like, nor do I understand silk/plastic flowers.
It was the final pre-surgery office consultation with my surgeon when I was escorted to a small office with two nurses to further discuss surgery and possible reconstruction options. The moment I received my diagnoses I knew a mastectomy would be in order. I knew my history. I was no longer a candidate for conservative surgery, also known as a lumpectomy often followed by radiation. I had elected this option three years earlier. I was informed at that time that if cancer reoccurred in the same breast radiation would not be an option and a lumpectomy is rarely performed without some kind of adjunct therapy such as chemo or radiation. So, when the diagnoses hit, I new there were very few, if any decisions to make.
I had just sat down when a huge black binder was pulled from the shelf. Inside were polaroids of women with bodies that were vaguely familiar, they had existed only in my imagination until that moment. Things got a little overwhelming and I began to cry. I asked that my husband be retrieved from the waiting room. He'd want to be in on this, i thought. not the decision of reconstruction. But I know him, he'd want to support me, whatever I decided and the idea of being in that room alone, without him, with these images simply felt lonely. Immediately I was deeply sorry and apologized for my reaction to the photos. These were strong, proud women who were further along the same journey I was now only beginning. My reaction jolted me into a perspective that was both humbling and empowering.
Even before my surgeon explained the procedure of reconstruction to me I was over 90 percent sure that I was not going to have an implant. And after the explanation- I was over 99 percent certain. The idea of stretching my breast muscle with a temporary saline implant for several weeks was alarming. Not to mention that my muscle and skin had a high risk of tearing with slow healing since it had been weakened from the radiation treatments. After three months or so of stretching and repairing the muscle I could've had a nice perky new saline or silicone breast with a tattooed nipple. But the idea of having a brand new perky breast on one side was completely too foreign to me. Philosophically it made no sense.
I have never been emotionally or psychologically attached to my rather small breasts (I don't even know my bra size- medium, 32-34B think). I wasn't necessarily freaked out about losing my breast as I was losing it to cancer- the fake breast would just as easily be a reminder that cancer dared trip into my life as no breast at all. So the attempt to look "normal" as in "never having cancer" or "fake it" factor was not an option for me. To move forward, post-surgery, as a single breasted woman was, I can say with deep honesty, a natural, somewhat gentle decision for me.

an idea for a t-shirt:
"there are worse things than LIVING with one breast".

bridges, drains and bows.

simply unveiling...

when my robe was opened in the recovery room to unveil my mastectomy i was met by these bows. i was told that a breast surgeons wife had designed these surgical bras. an effort to wrap this invasive, breathtaking experience in something delicate i suppose.

i remember the morning i went next door to my sisters apartment and asked her to photograph/document my "bridges, drains and bows". i specifically asked her not to include my face in any of the photos. i don't regret that request. on many levels i am sure i was protecting myself. as long as i didn't see my eyes, my telling eyes, i was safe. i wasn't denying that i was involded in this event, this journey, this hike into often dark hills. but as long as i didn't witness myself "in it" i could keep treading without seeing the fear looking back at me.

i threw the bra away several months after surgery. in an effort to be pratical. embrace the over-and-doneness of it all. i do, however, regret this- for as i reflect- it was an object wrapped in curious metaphors.

sunrise, day 2.

it was early morning, at the explosion of dawn when, as usual during the 3-day hospital stay for my mastectomy, i was awakened by my roommate’s television. she slept during the day and kept her light and television on all night. this actually didn't bother me. somehow i knew she was having a difficult time. other than her occasional, soft moaning she was very quiet. the muffled conversations that i could hear from behind the curtain with her doctors were strained and discouraging in tone. i would gather from them that her recovery (the nature of her surgery remained a mystery to me) was slower than "expected". i never actually saw her.

i awoke with a crisp clarity of my surroundings: seeing my iv bag and behind and above it- the stream of muave country roses that rippled just below the ceiling on the wallpaper border. basically alone in this room i became intensely aware of my presence and being grounded in the moment. metaphorically i would say i was standing on the edge. right then. right there. a clear vivid view of falling apart and staying solid lay before me. i turned to look out of my window and was met by a clock tower across the east river. the sun bore through it to display a sky bursting with burning orange and that icy winter january blue. a silent voice cradled me. it had birthed from my heart, my guts, my soul and deep from my conscience to rescue me. "stay cool. just stay cool" she said.

velcro with white- the color of surrender.

i was warned/informed by my surgeon that following my surgery i would be encouraged to view/acknowledge my mastectomy. so, i was still in a "recovery" room with my husband when a smiling, good spirited woman came in and announced with a smile that "we" take a look at the site. i was in fine spirits, a morphine drip slithered under my skin and so far I had been pretty "matter of fact" about this event. i was now emotionally neutral after the initial shock of diagnosis. pure, simple survival mode. the hard part was over, surgery. i was now on a high- not only morhine, but a psychological high. i was relieved that I had covered this quite unfamiliar, unbelievable terraine so far, and I was still relatively, elasticly sane.

no turning back. no turning it off. no walking out or away.

my robe was opened to unveil the delicate nylon surgical bra-contraption. two things etch my rather peaceful memory of this moment: the expected soft screaming of the velcro and the beautiful whiteness of my skin against the virgin white bandage strips- gracefully bridging the fresh sliver within the smooth, flat, unexplored landscape.

emblazened silver.

a closed/bound photo
on january 16, 2004 i had a mastectomy after my second breast cancer diagnosis in four years. i just wasn't able to finish the highly prized "5 year cancer free" marathon. several days before my surgery i scheduled a sitting with a ny photographer/artist who still creates "daguerreotypes". i realized early after my diagnosis the importance of embracing the terrain of the journey. i accepted that my body was going to be different and i wanted a "record" of it before the change occurred. it was an effortless decision and i knew this timeless, historical form of photography was the perfect medium to capture my body as i knew it. my twin sister accompanied me on this expedition and we arrived at the studio with pensive hearts and crystal clear intent... to embrace the event before us. the photographer was incredibly thoughtful and sensitive. the third photo was a charm. as the image birthed from the wash i saw my nakedness and my eyes looking back at me were etched with worry, fear and grace. i knew i/we would move on from this. as the photographer handed me the wrapped image we both became aware of the power of the exchanged object. after gently tucking the leather bound, moment-emblazened silver into my purse my sister and i went out for a delicious frenchtoast breakfast.
i have only been able to open the photo three times. even though i approach it with all the intellectual, logical and rational power i can muster i am unable to view it without the weight of overbearing emotions.