Thursday, December 31, 2009

2009: A Recap

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 its 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...

Monday, December 28, 2009

The Journey Continues

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...

Thursday, November 19, 2009

The New Screening Recommendations Suck

...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.

Thursday, October 29, 2009

In Memory of Stephanie B.

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...

Friday, October 2, 2009

Surrender the Pink

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!

Sunday, September 13, 2009

One of Those Days

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?

Monday, July 27, 2009

Back to the Drawing Board - Again

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...

Friday, June 26, 2009

Why is Everyone Staring at My Boobs?

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. The 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 boobs please?

Tuesday, March 10, 2009

Of Breasts and Femininity

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.