Breast Cancer Chronicles

Stupid Effin' Cancer...

2012-02-18T11:51:00.004-05:00

It happened again. This morning, I found out that yet another BC sister is reaching the end of her journey. Of course it made me really, really sad, but I also felt utterly and profoundly pissed off. I can't believe another family may have to say goodbye to a soon loved one due to this ridiculously insidious disease. Ugh.

This has been a heck of a year so far. I've lost several friends and acquaintances to this beast and several more to heart attacks and accidents. Still reeling from the news of one untimely passing, a call, email, text or Tweet would come about someone else's. The memorials and funerals have truly exhausted me, but they have gotten me thinking about legacy a lot more than ever.

My reality is this: I am a breast cancer survivor. Since this disease is such a crap shoot (in that no one yet knows why some BCs get gone after treatment and others come back) and there is absolutely no cure for this disease, the chance that mine could come back with a vengence and take me out is very real - even after seven years of being NED. Other than some meories and a few blog posts, what will be left of me after I'm gone? And what will those life left-overs say about me and what I did with my time here on earth?

The friends whom I lost ranged in age from 21 to 65 years of age. Their legacies include their children, their writing, their advocacy and the promise of what life had in store for them had they been here still to live it. They leave behind husbands and wives, children and Internet sisters, girlfriends and parents, relatives and friends who all remembered them "when" - when they were alive and kicking, doing their thing and living life like they'd retire and have grandchildren. Sadly, they didn't. How will the memories of who they were live on?

A few days ago, I was asked to write a bio for a presentation this spring. I was warned that writing about myself can be difficult - which I already knew, but I really had no idea why until I sat down to write this particular bio. Most of the people reading it will know me from the world of martial arts, although the award is for teaching outside the dojo. The truth is that I'm more than just a teacher and a karateka, but if you only see me in a gi or behind the podium in a lecture hall, you'd be none the wiser. The difficulty in writing about all you do and all you are, I found, is all about what NOT to include. Who wants their bio to read like they are a superhero?

But isn't that what we all are? Rachel, Elizabeth, Tim and Mr. Guzman certainly were. Nobody just does one thing all their life - be that world politics, a more mundane day job or heading a fabulous yearly fund-raiser/event - and they were no exception. We're all much more of a multi-faceted entity than how we can describe ourselves to someone we're meeting for the first time.

Today, this super hero is ticked off. It's time to cut the bull and find out what causes this disease so we can find a way to end it forever. It's time to stop the stupid parade of pink crap - and the way BC is feminized and turned into something cute, beatable and oh-such-a-gift. Fuck that. Cancer kills - and despite what you see about early detection, breast cancer is no exception. It's time to start asking where the millions raised each year for research actually goes and time to start asking why Stage IV/metastatic breast cancer gets too little attention and funding when it's taking so many people away from us.

April will mark 20 years since my mom died of brain mets - but in that time, despite the billions raised "for breast cancer" (whatever that means), the death rate for this menace has not changed an iota. That's some serious crap right there...

I'm tired. Tired of sending condolence cards and hearing about folks going to hospice. I'm tired of funerals and memorials for sisters who left us way too soon. I'm tired of the anxiety felt when it's time for a visit to the oncologist for myself or one of my sisters and equally as tired of the cute pink ribbons that trick the public into thinking dealing with BC is as simple as having surgery, undergoing with chemo/radiation and never having to deal with this beast again. I'm. Just. Tired.

I hope you are, too.

Thanks For Being So Narrow-Minded, Komen

2012-02-02T15:49:00.003-05:00

By now, the story of Komen's funding pull for Planned Prenthood BC screenings is well-known. Like many survivors, I'm shaking my head over it.

But I am encouraged by the folks who are not only calling Komen out, but donating to Planned Parenthood. Some estimates note that Planned Parenthood has received about $680K in donations in the last 36 hours. That should help cover the $640K lost, I'm thinking.

Although not one person I've seen cheering Komen on for doing the right thing has been able to aptly explain what abortion has to do with breast screenings, the spittle is flying. But most of the comments I've seen after articles, Facebook posts and message boards about this issue seem to be appauled that the Komen would yank funding to an organization that provides so many screenings for so many women without insurance who have no where else to go for them. That so many have taken to giving to Planned Parenthood directly speaks volumes.

So maybe this is the "big thing" we needed to get folks to stop thinking of Komen as an alturistic entity solely about ridding the world of breast cancer forever. Perhaps this will get folks who've walked, run, bought silly pink products and/or otherwise donated to Komen to see that maybe the business side of pink is more important to the agency than saving women's lives.

If this is the issue that gets people to understand that there are other breast cancer organizations out there that really ARE about researching for a cure and helping BC go the way of the dinosaur, it really wouldn't be a bad thing, I'm thinking. And if that's the case, I'm most thankful to Komen. I just hope that they take all those pink ribbons with them when they fade into oblivion.

It's been real, Komen.

Let the Pink Parade Begin

2011-09-30T16:58:00.006-04:00

This afternoon, I went to lunch with a few friends. We didn't even get in the door of Panera Bread before being greeted with a pink ribbon - via a sign that let us know all the proceeds from the day's purchases of pink food products would be donated to some sort of generic Breast Cancer organization. How much, what organization, where in the organization (for awareness, education or cure) were not even mentioned. So I asked the manager.

Of course he had no idea, he just regurgitated the few sentences that were probably on the memo he received from corporate last week. When I pressed him for specifics, he admitted he didn't know and directed me to the company's website which "should have all that information," he said.

And of course it did not. Not a word about it - not a pink ribbon or a mention that tomorrow - October 1 - even kicks off BC Awareness Month. So of course I hit the "Contact Us" tab and left a small book about the nature of my problem and why it just ain't cool to pink wash. Maybe they'll respond, maybe they won't. I'll keep you posted...

The Very BIG Business of Breast Cancer

2011-09-16T13:27:00.004-04:00

Many of my friends and family know how the site of pink batteries, M&Ms, oven mitts and vacuum cleaners can send me into an absolute frenzy. They get how the parade of silly pink products that happens every year about this time - all in the name of breast cancer awareness month in October - pisses me off to no end. They understand that I have issues with how money is raised and where it doesn't go because I've told them (OK - ranted) about it endlessly. They also know that the mention of Susan G. Komen "For the Cure" makes my eyes narrow and my eyebrows nit really close together - but still, they love me :-)

I've tweeting and FaceBooking about it, but every once in a while, I need help getting the message out. So I'm grateful to Marie Clare for writing an amazing article detailing why we should all think before we pink. Please give it a read and share the link with your family and friends!

Seriously - How Hard Could It Be to Find a Cure?

2011-06-20T17:16:00.007-04:00

Tomorrow morning, a friend will be heading in for a biopsy for calcifications that showed up today on her annual mammogram four years after her original diagnosis - this less than a week after a mutual friend of ours died of brain mets. My mom died of brain mets in 1992. Can't tell you how much I hate cancer today...

Now just think for a moment about all the walks and races that have been held and the silly array of pink products have been sold since my mother's original diagnosis in 1988. Seriously - are we any closer to a cure today than we were 19 years ago?

Enough of the bullshit. Enough of the pink perfumes and the beautification of breast cancer - because it's really far from cute, feminine or pleasing to the olfactory system (and anyone who's ever battled this beast or stood beside someone who has can attest to that). Enough ribbons and batteries and baseball gloves and vacuum cleaners already - a CURE is what we really need.

Sure, BC probably gets more attention and funds than any other cancer, yet mothers, sisters, grandmothers, aunts, friends, neighbors and co-workers die every day from it. There's something wrong with that picture.

And I don't want to hear about how multi-faceted BC is. Yep - there are lots of different types of breast cancers - I get that. But freaking pick one already and start there. I don't understand how difficult that is, I really don't.

So I logged onto Susan G. Komen's site to find out if they could help me understand it a little better. I saw from their little pink pie chart that only 25% of what they take in each year is actually allocated for "research and awards" (the "awards" part is supposed to be to local programs that aim to help women, so even less than that actually ends up in the "research" pot, it seems). But a combined 51% for "education" and "screening"? Important, true - but more important than researching a cure? Hmmmm...

And of course, the survivor in me hears a ticking clock somewhere off in the distance. If I ever have a recurrence or a new primary cancer, will there be much more hope than there is now that a cure will be found before I run out of time and treatment options?

I just wish I had more middle fingers to flip at breast cancer and all the bull that goes along with it. Rest in peace, Elizabeth B.

Wardrobe FAIL

2011-05-08T16:36:00.006-04:00

For those who don't know, I am a martial artist who spends way too much time in a karate uniform/sweatpants and a tank top to train/teach or when I head to the gym for a date with my old nemesis, the treadmill. As a result, when I do get the chance to dress up in real, live, girl clothes, I usually jump at it.

Last night, opportunity knocked. A black-tie scholarship/awards diner was held in NYC for a karate organization our dojo frequents. Wow - an occasion to wear a swanky dress, cute heels and a little blingy jewelry? I'm there! And thus, my dress hunt began.

The problem was the 3/4-inch wide divot to the right of my sternum left from the removal of a rib during my breast reconstruction. Anything I found that was swanky enough was cut just low enough in the cleavage area that my divot was on display. Just. Great.

But eventually, I found not one but TWO gorgeous dresses for the event. The first was a simple but elegant sleeveless black tea-length dress with a high bodice (just under the bra-line). It crossed in a "V" in the front which made only the corner of the divot visible. The other was an amazing sleeveless/backless wonder that was almost ankle-length. Long, scarf-like pieces of fabric extended from the drop waist to cover my boobs. The idea was to tie them at the neck and let them hang down the back to flow oh-so-gracefully behind me as I entered and exited the room. Dress #2 was HOT! And the divot wasn't a problem because the fabric was wide enough to cover it while still letting a little bit of skin peek through. Wearing a bra was not an option because the back was completely out. Only a very low-riding corset-type bra would have had any chance of not bring seen from behind and I wasn't able to find one that dipped all the way to my waist.

When I stood posing in the mirror with my arms to my side, all was well. But as soon as I moved my arm forward a few inches or above my waist, too much skin was visible on profile - and that skin included the edges of the scars from my IGAP. Hmmm...that could potentially made cutting the dinner chicken I'd be eating, bringing a fork to my mouth to chew it or especially the "throw-my-hands-in-the-air-and-waving-'em-like-I-just-don't-care" dancing I was planning after dinner out of the question.

So off I went to find some kind of under-dress solution. Thought I had my answer with a mini-corset bra that had no back but stuck to the body about mid-way between the armpit and elbow with some kind of re-usable adhesive. I was game to give it a try, but I could only find it in "nude" - which is a euphemism for "day-glow" on a brown girl like me. Grrrr...

Eventually I found and bought invisible two-sided tape designed to stick to the sides of fabric and skin to hold the dress in place, but it only stuck to the dress and not me. $10 totally down the drain...

With the departure time for the event getting closer and me still with hair and makeup to do, I finally changed into dress #1 at the very last minute. Yeah, I looked great (not tooting my own horn here, just sayin'), but what an exercise in futility and frustration...

Wardrobe issues. I know it's a very minor blip in the grand scheme of things, but sometimes, it can feel like a very big THING - and yet another gift that keeps on giving from the cancer gods.

What We Don't Hear About Awareness

2011-03-23T14:30:00.002-04:00

Breast Cancer awareness and education programs have always pissed me off. Fellow blogger Anna Rachnel's "What Do You Want?" post explains why better than I ever could.

We love you, Anna!

Komen Rots...

2011-01-25T16:15:00.007-05:00

Been writing that a lot lately - mostly in response to other folks' links about Susan G. Komen for the cure (that's their official name) and their battle to trademark the "for the cure" part of their moniker. (read more about that here). Seems to me like they've totally lost focus about what the fight to eradicate breast cancer is all about.

For the record, I've never been a big fan of Komen. I applaud them for bringing breast cancer to the top of the cancer pile, but it doesn't end with awareness and pink ribbons. They raise gobs of money via their races, walks and product donations, but still, 40,000 women died last year from breast cancer. Each October, it gets harder and harder to walk through the store without getting pretty ticked off about all the pink ribbons on things like cookies, batteries, pens and clothing. Companies, it seems, have figured out that if they slap a pink ribbon on their label and mention in teeny five-point type that a "portion" of their proceeds from the product's sale will go to Komen, they will make a mint. They make a million, donate $10K to Komen who lumps it into their generic "research and education" pile and no one is the wiser, right?

But what the heck research is Komen funding? Treatment for women who have been diagnosed or ways to end BC forever? Both are important, but they are two totally different things. Spend more funding dollars on research for the cure and nobody would even need treatment.

Blogger Anna Rachnel breaks down how the money is spent in her recent "Komen by the Numbers" post. A former public accountant before being diagnosed with metastatic breast cancer, she crunches the numbers and gives a very clear picture on how little of Komen's funds have actually ended up in that "research" pile since the organization was founded in 1982. Shocking, to say the least, but not surprising.

My fear has always been that Komen would become THE face of BC fund-raising and other organizations like the National Breast Cancer Coalition, the American Cancer Society and the National Cancer Institute would get pushed aside while their donations get smaller and smaller. If Komen's trademark attempts are successful, I could totally see that happening.

Know that there are lots of survivors, relatives of survivors and even relatives of lost warriors who are not at all happy with how you do what you do, Komen. Know that we're watching you and blogging about your shenanigans as well. You really ought to be ashamed of what you're doing, but I suspect you aren't.

In that case, you really do rot.

On My Christmas Wish-list for 2011

2010-12-29T18:50:00.004-05:00

Finally - someone has the nerve and knowledge to tell the truth about the pink-washing of America that goes on every October. Hats off to sociologist Gayle A. Sulik for her new book "Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health." I want this book! Really wish I could have gotten it this year for Christmas, though...

I found out about the book from another survivor's Facebook post about a book review that appeared on Slate.com. After you read the review, take a look at the comments below it that do everything from complain that breast cancer gets too much attention (compared to other cancers) to placing the blame for getting the disease smack on the laps of survivors. Sickening, really...

But I do agree with Sulik that we need to do a better job holding companies that make shit piles of money on the business of "racing for the cure" much more accountable for how they spend what they raise. To me, giving a CEO a $459K+ salary wastes too much of what is supposed to be for research (cough, cough, Komen). My son and I lived on 1/12 of that the year I was diagnosed while paying for my own health insurance (I was self-employed), treatment co-pays (like radiation which was $100 a week for six weeks) and hospital and doctor payments following surgery, so, yes, I think that is too much money to be giving a CEO of a non-profit agency that is supposed to be about raising cash to cure this stupid disease. But, that's just me...

The Fear That Just Won't Go Away...

2010-12-29T17:05:00.006-05:00

For a few days now, I've had a nagging pain in my rib. Not only is it on the radiated side, but it is right where my bra tucks into my body under my right breast. Anything that touches that spot causes a dull ache, but it is also the same spot on my rib that has hurt off and on since radiation some almost six years ago.

OK - so I know the rules about "new" pains for cancer survivors: 1) call your doc if it lasts constantly for two weeks and 2) that cancer usually doesn't hurt, so if pain is involved, don't panic. Sounds logical and all, but logic tends to go out the window when the mind starts wandering in the middle of the night.

Of course I'm thinking "recurrence" - who wouldn't? I know it's only been two days, but still. So I worried and fretted and even thought about what chemo and surgery options I might have. It was even worse than scanxiety (that naggingly long time between blood-work, scans or other tests and getting the results). Sigh...

And why must this stuff always happen in the middle of the night or over holiday weekends? It was all I could do to not reach for my phone and log onto WebMD. At 3A.M. While holding my side. And planning my memorial service.

But I did stay in bed. I also grabbed the heating pad (which is always plugged in at the side of the bed due to aches, bumps and bruises from karate) and turned it on. The heat felt good, the pain went away and all was right with the world again. And it will be until the next nagging pain, I'm sure...

Cancer sucks, BTW...

The Oncologist Visit That Wasn't

2010-06-20T13:55:00.003-04:00

My oncologist is a breast cancer survivor as well. When I met her for the first office visit, she was sporting a wig and a lymphydema sleeve. As much as I like her, she does something no other onc I know does: insists on regular follow-up visits every three months well past the one and five year NED (no evidence of disease) marks. Other oncs drop to six month visits after a year then once a year after two NED years.

OK, so cancer isn't part of my daily thought process anymore, but every three months I hafta make an appointment, have blood drawn, weight taken and lymph nodes felt. The only other tests she's ordered is a bone density scan (and that was two years ago), so it isn't even a case of "scan-xiety" (the seemingly long amount of time between having a test done and getting the results). I just hate going to see her on principle alone.

I missed the last visit in April because I had something to do for work, I think. I was supposed to call the next week to reschedule, but I never did. Might as well wait until July and schedule it then, but I don't even want to do that. It's self-defeating and stupid, but, what can I say? I just don't wanna go!

Yep - that's me in the corner frowning and pouting, can't ya tell?

2009: A Recap

2009-12-31T20:26:00.004-05:00

In the last 12 months, I've lost four friends to breast cancer. Amazing women all, their deaths weren't really shocking as all were diagnosed Stage IV.

My diagnosis was Stage II, primarily based on the size of the tumor (about five centimeters or two inches). Not needing chemotherapy, my prognosis was good and I've been NED (No Evidence of Disease) since 2004. And as amazing as that sounds, it does nothing to alleviate the fear of someday being diagnosed Stage IV myself.

In many ways, having had cancer has made me extremely careful. Always into healthy eating and fitness, I've been even more careful about what I put into and on my body in the last five years. Still have some difficulty eating five fruits and veggies a day, but I strive for it.

But in many more ways, being a cancer survivor has made me reckless in ways that have shocked me. Whether it is texting or talking on the phone while driving too fast or throwing caution to the wind with my finances, it's almost like somewhere in the back of my mind is what I call a "live for today because it could come back tomorrow" mentality. That's the lasting legacy that cancer leaves in it's wake. Although it sometimes takes a back seat to the more pressing issues of work, family and that nagging need to buy groceries, it's always there hovering around and floating through the transom of my mind - and it totally sucks...

Please let this be the year where major steps are made towards finding a cure...

The Journey Continues

2009-12-28T17:00:00.003-05:00

Five years ago yesterday, I was recovering from a re-excision to get closer margins after my bilateral. Three years ago yesterday, I was sitting in the waiting room of a NYC reconstruction surgeon before what turned out to be the worst consult I'd ever had. Today I was commenting to a friend about how, although I'm happy to still be among the land of the living, the scars on my chest are a constant reminder that this has been a helluva trip.

Cancer isn't something I think about 24-7 anymore, but still I've lost three friends in the past few months alone to this disease. As I type this, another is struggling to stay in the fight. So, yeah, it's not so totally all-consuming, but it's on my mind.

The reality is that lots has happened in the last five years. I survived the diagnosis, the treatment, reconstruction and all the craptacular stuff that came as a result. Feels good that I've been able to look cancer square in the eye and flip it the bird, so to speak, but another battle may be in the cards for me, who knows. That's the thing about this stupid disease, you just never know...

So, I wish this path was not one I'd hafta be on, but it is. Please continue to keep the breast cancer and other cancer survivors you know in prayer. The road can be a rocky one at times...

The New Screening Recommendations Suck

2009-11-19T16:42:00.006-05:00

...and it seems like everyone with a brain or who's been unfortunate enough to have undergone breast cancer treatment knows that.

In case you have been on an island without Internet, radio or television access for the last few days, on Monday, the United States Preventative Services Task Force - a panel of folks who review medical data (number crunchers, if you will) - came up with a crazy recommendation that women should start mammograms at age 50, get them every two years and not even bother with self breast exams because they tend to result in false positives that cause women needless stress and worry.

When my friend Denisa emailed me with the news, I thought it was a joke. She said she did, too, at first.

For the record, doctors and the American Cancer Society have been telling women who are not high risk (no personal or family history, no other history of "female" cancers, et al) to get their first - or baseline - mammogram at age 40 for two decades now. In that time the detection rate has increased while the death rate from the disease has dropped. For women with a family or personal history of BC or who have other risk factors, the recommended age is often even younger. For example, my mother was diagnosed with Stage III breast cancer when I was 21 years old. I also had a history of fibroadenomas (benign breast lumps), so my baseline mammo came when I was only 25 - the same year my mom died from the disease. I've seen studies that suggest women who have a first-degree female relative (mother, sister or grandmother) with breast cancer start mammography at least 10 years before the age the relative was diagnosed. This sudden shift - by a group of analyst, no less - is mind boggling to say the least.

When I was diagnosed at age 37 after finding a small lump, the mammogram that followed showed calcifications in the ducts of my right breast - and I know LOADS of women diagnosed in their early 20's, 30's and 40's. If we would have waited until our 50th birthdays to have our first mammograms, most of us probably would have had to been dug out of our graves first to do it.

One in eight American women will be diagnosed with breast cancer in her lifetime. Sure the risk increases as we age, but the reality is that this disease is not just one that older woman get. Most women diagnosed have none of the risk factors when they hear the words "you have cancer." And amazingly, women find most thickenings/changes/lumps themselves via self-exams. How this panel - which included not one oncologist or physician, by the way - could conclude that mammography and breast self exams offer no life-saving benefit for women under 50 is truly beyond me. Whether it was an attempt to save insurance companies money by reducing the number of "unnecessary" screenings or not, the recommendation is a totally stupid one.

For more on the panel's findings, click here.

In Memory of Stephanie B.

2009-10-29T12:34:00.008-04:00

Just found out a few minutes ago that a woman I knew from a breast cancer support message board passed away from the disease this morning. Pictured here, she'd just turned 44 a few months ago and leaves behind two children.

Diagnosed Stage IV in 07, she'd been dealing with metastases to her liver, hips and brain for a while. She fought through almost constant pain, hair and weight loss plus custody battles with her ex over the children in the past year alone. Not only a woman of strong faith (her message board signature was "God is Able"), she was truly a warrior that was taken far too soon.

This effin disease BLOWS.

Although our diagnoses were different (she was triple negative and I'm ER/PR positive), we struck up a fast friendship and often posted to the newbies on the board (particularly African American women who logged on afraid and worried about their own diagnosis) about our treatment, chemo, radiation and reconstruction experiences. About a year ago, she asked me to do her a favor and send some of her posts from the board to her church family when she passed so they would know how important a life-line the board had been for her. I felt extremely honored that she'd asked me.

So, tomorrow, I'll be searching the message board for some of her most poignant posts. I'll get them together and send to her church like she asked me to. I'll send condolences to her family and friends and keep praying that someday soon, nobody will ever again have to lose a friend, mother, sister, aunt or neighbor to this devastating disease.

And on Saturday, I'll be thinking of her as I smash a few boards at a breast cancer fund raiser. REALLY feeling the need to hit something while I think about that pending cure...

Rest in peace, sweet Stephanie. God truly is able...

Surrender the Pink

2009-10-02T12:48:00.008-04:00

Each October, I promise myself I'm not going to get too upset by all the pink crap that is seemingly every freaking where. Tried that last year, but it didn't work (seriously - click here to find out why). I remember being so upset in Walmart once - after seeing a pink Parker Pen that donated 1/10 of a percent to BC research - that I thought I was going to lose it. But eventually the month ended and the pink vacuums, soup cans, cookie cutters and water bottles soon disappeared. I guess the idea is that people only can or want to be aware of breast cancer for 31 days - and not a second longer.

About awareness: what the hell is it that we're supposed to be aware of? Before my diagnosis, I knew that young, otherwise healthy women got the disease and died from it because it happened to my mom. I knew that a history of benign breast changes were a huge warning sign for pending breast disease because it happened to my aunt. But although I had two pre-menopausal relatives affected and I'd also had a history of fibrocystic breast disease, I never in a zillion years thought I would ever be diagnosed. So what are we making people aware of each October - that every brand in America can turn a profit if they stick a pink ribbon and some pithy text about hoping for a cure on their label? That's certainly what it seems like.

All the Yo Plait yogurt lids in the world will not keep women from dying of this disease, it seems. 186,000 American women alone will be lost to breast cancer in 2009. Pink products, ribbons and races don't seem to be putting a dent in that number, either.

I'm not saying don't walk/run or buy products that talk about donating to breast cancer research, but I am saying that reading the labels is important. Find out where the money is going (treatment or mammos? cure research or into the pocket of the company CEO?), how much of it is being donated (is it a paltry penny for each $4 you spend? is it capped at $10,000?) or even if it's being donated at all (you'd be surprised at how many pink ribbon products mention nothing about where all the money collected goes). If we don't, the pink parade of stupid products will only get worse, scores more women will be diagnosed and we'll still be wading through the pink sh*t and HOPING for a cure.

I'm also saying this: Enough of the pink stuff. CURE this b*tch already!

One of Those Days

2009-09-13T22:32:00.002-04:00

Felt totally off kilter today and couldn't figure out why until I looked at the calendar and noticed the date. September 13, 2004 was the day I found the lump in my right breast that changed everything. The surgery wasn't until about two weeks later and the "So sorry, it's cancer" results weren't given until October 4 (my official "cancerversary"), but today is the anniversary of my knowing that something just wasn't right.

I'd had lumps before - nine biopsies prior to this one, in fact - so I knew what was in front of me. But somewhere deep, I knew that this time the road was going to be different somehow. How right I was...

This effin' disease has taken so much from me it isn't even funny. In addition to my mom who passed away from brain mets in 1992, it has taken my breasts, my self-confidence and a tiny bit away from the idea that I will live to a ripe old age. It's always, always there, even when I think I'm done with it - evident by the fact that today's date sent me into a freaking tailspin...

Have I said how much I hate breast cancer today?

Back to the Drawing Board - Again

2009-07-27T19:47:00.002-04:00

Although I am totally happy with my IGAP reconstruction, there is one thing about it that bothers me: to access the main mammary artery, my surgeon had to remove a rib. Not a big deal, I guess - save for the fact that I'm skinny and it created a hollow right near my sternum. Because of the divot, I can't wear scoop-neck shirts and anything low-cut can't go too low at all, which isn't a problem in the winter when my wardrobe consists mostly of turtleneck shirts and high-heck sweaters, but in the summer, it has proven to be an issue.

This weekend, I went to a concert in Central Park with my cousins. I wore a pair of capris and a cute top that I love. It buttons up and covers the hollow, but in one picture, the top of the hollow is just slightly visible. I hate that it's there, but the only way to get rid of it is to start the plastic surgeon round robin again. I was so totally sure that after the last stage of the IGAP, I'd never need to see a plastic surgeon about my chest ever again, but...

One should never say never, I suppose...

Why is Everyone Staring at My Boobs?

2009-06-26T12:09:00.008-04:00

October 4, 2009 will mark my five year "cancerversary." I remember when my diagnosis was new and every now and then, someone who knew of my bilateral would sneak a peek at my new girls - like I couldn't tell that their eyes suddenly dropped from my face and to my chest (trust me, it is very obvious). I even remember lamenting about the peeks on a breast cancer message board and finding out that it happened to everyone once the word of their illness got out. Eventually you get used to it, the seasoned veterans told me. And you know what? They were right, although I never really got totally comfortable with it.

It's been four years since I was in active treatment and dealing with expanders/pending exchange surgery. This seventh of this month also marked the two year anniversary of my IGAP. Ironically, after everything is virtually finished, the chest looks have started happening again.

Not sure what people expect to see - or not see - when they scope my chest, but in business attire, casual wear and even in the sports bras and athletic tops I wear for karate and working out, you can't tell anything is amiss - which is exactly why I decided to have reconstruction in the first place. I can recall only one male serial gawker, but there have been quite a few females. Of course part of me understands that they are curious and want to know if they'll look any different if they are unfortunate enough to have to deal with breast amputation, but still. Can't they just jump on the Internet instead? There are lots of great sites that have plenty of anonymous reconstruction before and after pics. It is possible to spend hours there, gawking all day long.

So would you stop staring at my boob please?

Of Breasts and Femininity

2009-03-10T13:19:00.002-04:00

It's funny how all-consuming my breast cancer journey was for a while - that is until my reconstruction was finished. The urgency about it all sort of faded for me soon after tattoos were complete, evident by the fact that I never even posted about getting them done. When all of this was fresh and new, never did I believe that I'd be able to go a few hours - let alone months - without thinking, talking or writing about breast cancer. But I no longer even check into a breast cancer support site that had become my lifeline anymore and I only seem to think about cancer when it's time to see my oncologist...

Yesterday, I took the day off and found myself watching the "Tyra Banks" show in the middle of the afternoon. The show was about how size matters - specifically, the size of a woman's butt, hips, thighs and breasts. On stage was a panel of "experts" - five guys who sat and observed, giving their take on women's backsides and bra sizes. I guess they were there to prove right every stereotype about men and what they're attracted to, because that's exactly what they did.

But it was truly amazing to see how many young women in the audience and on stage equated their femininity with how their asses look or how many guys stare at their boobs when they walk into a bar. Two women, upset with their A cups and the fact that their best friends had huge ta-tas, had practically spent their whole lives lamenting the fact that their small breasts had kept them from truly enjoying life. They only lit up when they were given push up bras, breast enhancement pads and low-cut shirts to parade in front of the gaggle of guys at a mixer. Neither of the women seemed bothered by the fact that the guys hardly looked them in the face at all; they were both just sooooo happy with the attention that they didn't know what to do.

Next came the segment where the panel of guy experts tested their visual acuity by guessing the bra sizes of random women in the audience. To their credit, most of them nailed the cup sizes, but almost none of them got the back size correct. The poor fellas had no idea really what the numbers before the cup sizes actually meant and a few kinda thought that the bigger the number the bigger the boob.

There was even a woman who admitted to using her boobs to get guys to pay her rent, buy her gifts or do things for her. She even told a story of how she once had a guy in a bar give her the $600 in his wallet just for a quick feel. When Tyra asked her if she thought the idea of taking money to get felt up seemed remotely like prostitution, she simply laughed the idea away.

Not one woman on the stage or in the audience stood up to say she used to be a certain cup size but breast cancer had sort of changed that. Nobody flashed a breast prosthesis and asked the panel to figure out what the hell size it was. Nobody really even thought it was odd that losing one or both breasts to disease was even a possibility. It was really sad. And I'm planning to write Tyra today and tell her the same.

Stage II - Done!

2007-11-07T08:08:00.000-05:00

Nipples and revisions for symmetry and shape usually happen during Stage II reconstruction, but we decided in the operating room that no revisions were really necessary. Dr. Levine did the nipples in about an hour under twighlight anesthesia (somewhere between being fully-awake/numb and completely asleep), gauzed me up and sent me on my way. There wasn't much pain at all (only two extra-strength Tylenol in four days) and my mobility was fine. Trouble was the bandages - big and kinda bulky, which made it tough to get into a bra.

I couldn't shower or take off the gauze for two days, which was torture because I REALLY wanted to peek. And finally, when everything came off, I couldn't get over how LARGE the new nips were. FREAKISHLY large was how I described them. I know they are made so large because they will shrink, but my goodness! The breast looked to be about 60% nipple! Part of it might have been that it had been so long since I'd had nipples (three years), too. Sigh...

So, so far, so good. Aereola tattoos are what Stage III is all about. Maybe I'll get new aereolas for my birthday in January...

Surgery - DONE!

2007-06-13T18:43:00.000-04:00

Ended up moving my surgery back until after karate promotions on May 3 [I got my BROWN belt, btw :-)]. The closest available date after that was June 4, so last Monday I had my surgery. Once the anesthesia wore off on Tuesday, I was really thinking I made a huge mistake; I felt like I had been leveled by a very large truck.

By Wednesday, I was up and walking - very slowly - down the halls of the hospital. On Thursday, I was able to shower and feel a little more human again. Friday they let me go home - actually to a hotel near the hospital as I needed to be within a 30 minute drive in case something went wrong with the flaps and I had to head back to the OR. Two days ago, I came home.

How do I feel now? It's hard to sit comfortably because of he incisions under my butt, but I am virtually pain-free. I still have a drain in each hip, so I'm unable to sleep on my sides as I normally do, which is most uncomfortable. I also can't bend at the waist because the incisions near my butt are tight and I still have some swelling above my hamstings that makes getting comfortable when I'm not on my feet hard to do. I also can't really lift either leg any more than a few inches off the ground, which makes climbing stairs and getting dressed tough, but each day gets a little bit easier, as I'd been told it would. The drains and stitches in my hiney should come out Tuesday, so I'm hopeful comfort will soon follow. I'm missing karate something terrible, but I'm almost two weeks into my one-month minimum of no activity. Time is my friend as far as recovering from an IGAP, I'm finding...

And my new girls look great :-)

I-GAP Approved - Whoo-Hoo!

2007-02-20T11:34:00.000-05:00

I got the word from the insurance company a few days ago that the surgery has been approved. I'm thankful, but I also really feel for women who have to suit up and battle their own insurance companies just after being diagnosed with breast cancer. The amount of tenacity it takes is incredible. Who has the strength for that while reeling from an "It's cancer" diagnosis?

And after all it took to get the approval, I'm now thinking of sliding the surgery back until May - after karate promotions are over and done with. Can't help bur hear Gnarls Barkley's "Crazy" in my mind...

Insurance Company Won't Approve Surgery

2007-02-12T14:09:00.000-05:00

Just when I thought this whole trip couldn't get any weirder, I am now in the middle of a battle with the insurance company over whether or not they will cover the I-GAP procedure.

The suits over at "HMO Central" are saying that since thy have doctors in network that do other free-flap procedures, they will not authorize surgery by the doctors I've chosen. Trouble is I'm not a candidate for any other free-flap, and if they knew anything about the procedures - or even read the medical reports my plastic surgeon sent - they'd know that.

I'm about half-way through the 15-day wait they impose before they'll make a decision on the first appeal level. Since surgery is set for March 8 - and they know it - I won't be surprised if they wait until the last possible minute to say yea or nea. If "no" is the word, I have to file another appeal and eventually appear before an ombudsman pannel to say in person everything I and both my plastic surgeon and primary care doctor have already said via letter.

Sigh. It's just amazing that after all that's happened to me over the last two years, the last leg of the journey is at a standstill because of an insurance customer service rep who can't - or won't - read a medical report.

Surgery Date Moved Up

2007-01-25T11:41:00.000-05:00

It's only two weeks earlier - to March 8 - but it is sooner than originally thought. Part of me is excited to get going already. Part of me is terrified.

This is a big surgery. Not only will my chest be cut, but my butt, too. How will I possibly get comfortable enough to sit - much less sleep - until everything heals? I will also be unable to run/lift/train in karate for a month or longer, which is not cool. It will be really hard to go from working out six days a week to doing, well, nothing. At least with my other reconstruction surgeries, I could walk or bike/use my lower body after two weeks or so. This time, I don't think I'll have that option.

In the grand scheme of things, not being able to work out or a while probably shouldn't be a big deal, but to me it is. Training - including doing very physical things in karate that I'd never even attempted before - was the one constant during treatment and reconstruction. Whether I had expanders, no boobs, one boob or whatever, I was always able to work out. I'm already mourning the inability to do that and I'm still six weeks away from that becoming a reality.

But onward, ho...

Plastic Surgeon Consult #3

2007-01-04T12:32:00.001-05:00

Yesterday, I met Dr. Levine. Another trip to NYC, but no anxiety this time. I figured things couldn’t have gone any worse than last week. But, just to be safe, I pulled into the first parking lot I could find.

I was greeted by Tasha when I walked in. She was pleasant and friendly and asked if I’d mind if her sister, who is a pre-med student at Penn State, sat in on the consult with the doctor. She told me it would only be a few more minutes until the doctor would see me and she even offered to hang up my coat for me.

Dr. Levine greeted me in his office, which means I didn’t meet him for the first time in a front-open medical gown. We talked about my surgical history and about my breast cancer saga. He took his time explaining the different techniques available – including ones he doesn’t even perform. I felt comfortable; I liked this guy!

After the exam, it seemed like an I-GAP (Inferior Gluteal Artery Perforator) Flap – where skin, fat and blood vessels are taken from my butt, shaped into a breast and microscopically implanted onto my chest - was about my best option. I’m skinny, so there isn’t a WHOLE lot of fat to work with, but there is enough for a boob although it would be smaller than the other side (which still has a C-sized implant). I’ve had enough of being uneven (been that way since the right implant was removed in August), so I decided to have the left side done, too. The bad news is the new girls be smaller than before. The good news is I’ll get to shop for all new bras soon :o)

The surgery is tentatively set for March 20. Dr. Levine said I wouldn't be able to workout for a solid month, so I might miss karate promotions in May, but we’ll see…

Plastic Surgery Consult From Hell

2007-01-03T21:01:00.000-05:00

December 26, 2006

Continuing the "Reconstructing Felicia's Chest" saga, I had an appointment today with yet another plastic surgeon - the third since my breast reconstruction adventure began two years ago. I was feeling a lot of anxiety about the visit - especially about having to again recount the story of the breast cancer diagnosis, mastectomies, expanders and the radiation that caused the expanders to fail. Of course I’d have to flash my mangled chest and pretend like having photos taken of me with no top on aren't a big thing; thinking about all that almost made me turn the car around and go home. But, being that today was the second day of Kwanzaa – Kujichaagulia – which means “self determination,” I decided to drive to NYC to keep my appointment and see what could be done about the mess that was once my right breast.

As soon as I stepped into the office, I wished I’d stayed home. The place was super busy and the receptionist didn’t even look up when I told her my name and the doctor I was there to see. The forms she gave me to fill out me barely had a sixteenth of an inch between questions for answers so I ended up having to go to the desk and tell her what I'd written (so much for patient privacy). Manhattan isn’t the easiest place to find street parking, so I arrived a half-hour late trying to find some place to leave my vehicle. I still had to wait over an hour to see the doctor.

The nurse who took me to the exam room didn’t say a word to me. The doctor is the only person in the place who even made eye contact. Still, after explaining my story and telling him what I DON’T want (absolutely NO muscle compromised, so TRAM and Latissimus Dorsi flaps are OUT), the only option he offered is something I’ve never even heard of – and believe me, I’ve done my research.

I took his card before I left so I could email or call with questions, but I already knew I wasn’t coming back. And, to add insult to injury, I had a $115 parking ticket when I finally got back to my car. Sigh…