Sunday, October 23, 2011

Pink Ribbons/Pinkwashing - There's a Difference

I love pink; it’s always been my favorite color; if it came in the form of sparkly, sparkly jewelry, even better.

And not just any pink, the Barbie pink that’s associated with breast cancer ribbons today. Little did I know all these years that pink would come to mean a whole lot more to me!

I love that women are wearing pink ribbons. To me, that’s a sign of support for me and what I’ve been through. In fact, look at my blog – pink. My twitter home page is black with pink ribbons. So I’m absolutely not adverse to pink ribbons.

I also know that other women support breast cancer, but they don’t wear ribbons. Because of that, does it mean they don’t support cancer? I don’t think so.

There have been some cute Facebook awareness campaigns, but there was also one that was kind of, well, crass. Remember the campaign about putting the color of your bra as your status? Me and others felt that it wasn’t in the best of taste. Think about it – using a bra as a sign of support for women who have lost one or both breasts. Yeah, I wasn’t thrilled about that one; but I knew it was well meaning.

Does that mean that I think the campaigns that women come up with on Facebook, or just about anywhere, are bad? ABSOLUTELY NOT! In fact, I’m honored that you take the time. It’s truly touching that people want to help you, raise money, cook dinners, clean your house or anything else they can think of to let you know that they’re supporting you. It’s kind of awesome. No, not kind of, it IS awesome.

I believe that it’s in no small part to these campaigns that breast cancer is fairly treatable these days, if caught in time. According to my doctors, I was at Stage 3 with a bullet; it could have gone to Stage 4 any day. As it was, they took 20 lymph nodes, and 13 tested positive for cancer. I was lucky.

We still have a long way to go for metastic cancers, though. And not just metastic, but all cancers.

So here we are in October - Breast Cancer Awareness month. The pink ribbon is everywhere, and companies all over are turning products pink. There’s pink shoes, pink drinks, pink cans, pink handbags, pink shirts; just about everything turns pink for this month. While I know that the idea is to raise awareness, I think that’s been done. I think we’re all pretty aware of breast cancer right now. You’d have to be color blind or living under a rock not to be aware of breast cancer.

Now we need to move on; it’s time to look for a cure. If you haven’t known someone with cancer, let me tell you, the cure we have now is Hell on your body. Chemotherapy has come a long way, but it’s still a horrible way to kill cancer. Add Neulasta shots to the mix, and I was in more pain than I want to remember. I’m still dealing with issues from chemo; I occasionally have memory lapses. It’s a good thing Matt, my kids & Michele are around; they often jog my memory. I also have neuropathy pain, with the worst of it in my feet and on my spine.

Radiation, while it doesn’t hurt, is an exercise in fatigue. Plus, you have to go 5 days a week; in my case for 6 weeks. Think about it; driving 30 minutes each way for a 5-15 minute treatment, back home, and at it again the next day. A lady who was undergoing radiation with me was coming down from the Poconos – an hour and a half each way. 

I swear, I don’t know how women who didn’t have the luxury of working from home managed. Being a writer, I can write whenever I want to; often times, I wrote from my bed. To you ladies, holy cow; you’re my hero. I can’t fathom how you felt during both radiation and chemo. More than that, I can’t imagine how you did it. You’re amazing.

The way we’re treating cancer now is often times effective – but comes at a great price. There’s got to be a better way. And there are people for whom the treatment didn’t work. Again, there’s GOT to be a better way!

I also think of other cancer victims – not just breast cancer. Breast cancer is almost trendy these days, as dumb a statement as that may be. People suffering with other cancers don’t have all this attention lavished on them. Colon cancer, for example; I don’t think there’s going to be a big scary deal made out of it, yet lots of people die from it every day. What about bladder cancer? My mother in law, Gretchen, has it. Do you think there’s ever going to be “Pee for the Cure”?

See what I mean?

I can’t imagine how angry I’d be if I was suffering from lung cancer right about now. As we all know, lung cancer is associated with smoking, but not all cases are directly related. How would you feel if you’ve never smoked a day in your life, but you got diagnosed with lung cancer? People look at you as if you’ve brought it on yourself. And even if you did smoke, it’s still awful; especially since smokers are one of the few groups of people that it’s politically correct to mock. It’s unfair.

Cancer sucks. ALL cancer sucks. I think we’d be making real progress if we made October CANCER month.

I’m also annoyed at some companies who’re making money off the pink ribbon campaign. Everyone is jumping on the breast cancer bandwagon – and making a boat load of money off of people like me, and our suffering.

Commercials are everywhere, with announcers tugging at your heartstrings by saying, “For every $1, a nickel of it will go to breast cancer awareness”. Or something along those lines

What they don’t, no, won’t tell you is that there’s a cap to how much money they’re going to donate. After they’ve reached that cap, all the money that we think we’re contributing to breast cancer causes goes directly into the pockets of the corporation.

According to “Think BeforeYou Pink”,

Many companies place a cap on the amount of money that will be donated. For example, Give Hope Jeans, sold by White House Black Market for $88, donated “net proceeds” from the sale to the organization Living Beyond Breast Cancer. But they’ve capped their contributions at $200,000. This means that once they had reached the $200,000 limit they stopped contributing, no matter how many pairs of jeans were purchased.
In some cases, that cap is a generous amount. In some cases it’s not. But you should know that, whenever there is a cap, your individual purchase may not contribute anything to the cause, depending on when you shop and whether the cap has already been met.

Additionally, which charities that companies are donating your hard earned, well intentioned money to is important. And that’s where Susan G. Komen and their “for the cure” comes in.

At this point, I have to say (I don’t want to get sued by Komen because they sue – oh, do they sue), the following statements are my humble opinion. You can look up the facts for yourself, but, like I said, this is my opinion only.

The problem with Komen is that only 15-17% of all the proceeds raised go into actual research – you know, the only way we’re going to find that elusive “cure”. They take in an impressive amount of money, and pay their executives quite well.

They point to early detection and the fact that they fund mammograms for women who can’t afford them. What they DON’T tell you is that they also contribute to Planned Parenthood, the nation’s biggest abortion provider; LiveAction.Org reported on it.

In fairness, they say that it’s for mammograms, or some type of awareness programs. But, from I’ve been able to ascertain, they don’t mandate that the monies go strictly to mammograms or anything else breast cancer related.

Truthfully, there are a whole bunch of other places where women can get mammograms for free with the help of Komen. Planned Parenthood never was a blip on my radar when it was time for my mammogram. Had you ever considered Planned Parenthood as your breast health provider?

I’ll bet your mouth is hanging open, right?

Another thing you don’t know about is the fact that they claim they own the phrase “for the cure”. In fact, they guard those three words with a team of lawyers. Google, “Susan G. Komen sues”; you’ll get an eyeful.

Some of the money you think is going towards breast cancer awareness, prevention and research is going towards a bevy of lawyers. They go after small mom & pop fund raisers who have the audacity to put “for the cure” in their name. Look up “Mush for the Cure”, or “Kites for the Cure”; Komen has gone after them with a vengeance. Their reasoning? They claim that when people donate money, they should know that they’re donating to Komen. Apparently, you’re too stupid to figure it out.

More than that, why would they care? Isn’t their supposed goal to end breast cancer? If a small group of volunteers raise some money and donate it, why would Komen care? I mean, shared goal and all. It makes you think.

You can read so much more about Komen at the website It doesn’t make me happy to report this, folks. Not even a little bit. In fact, it makes me angry. And from what I’ve read, many other breast cancer survivors feel the same way. 

There’s much more to this organization, that I believe started out sincerely trying to do good. Unfortunately, as they got bigger & bigger, other things have become important.

The point of my little rant here is to be careful. Don’t be suckered into spending money because a company claims that they’re donating money for breast cancer awareness, detection or “the cure”. Find out what their cap is; if it’s pretty small, say, $200,000, your purchase probably isn’t doing anything. I know that figure is a lot to you & me; but when you figure sales can top $5 million, you see where it’s a pittance. There are also tax breaks for charitable donations; that has a lot to do with it as well. So that $200,000 donation is a tax write-off. Isn’t that wonderful; contribute money to breast cancer from sales that you might not have had at all, then get a hefty tax break for your trouble.

To make matters worse, some companies have ingredients in their products that have been shown to cause breast cancer! Komen’s new fragrance, “Promise Me”, has ingredients that have been linked to causing breast cancer! You can read more about it, and the “pinkwashing” of America on USA Today. The article is called, “Komens pinkribbons raise green – and questions”. There’s also a site that I quoted earlier in this post called “Think Before You Pink”.

Are all big companies the boogey man; the macabre folks getting rich on the backs of so much suffering? No; I really don’t think so. A good many do; but I can’t paint all of them with the same brush stroke. In fact, most of the people who’re putting together the drives for their company don’t know about the cap.

So, what’s the point of this post? It’s actually three fold.

First, it’s to acknowledge that cancer affects more than just breasts. Cancer is cancer is cancer; and it doesn’t know which month it’s supposed to strike. Cancer is horrible. Cancer is scary. Cancer is a killer. Cancer sucks. ALL cancer. I hope more than anything that all cancer sufferers, no matter where it strikes, will feel that we care. Our focus needs to be curing cancer.

I know that cancers of the breast and colon are different. However, I believe that once we figure out what makes one cancer tick, and learn how to kill it, a domino effect will occur. There’s GOT to be a way, other than chemo and radiation, to kill it.

Secondly, I ask that you “Think Before You Pink”. Ask questions. Don’t be bullied into buying a can of soup that says, “Supports breast cancer” over the generic one. In these trying times, it’s especially important to a lot of us.

As you may know, my best friend is Michele Buono. She’s always had an issue about the pink ribbon campaign. She calls them the “I care more than you” ribbons. So, don’t feel that you have to sport a pink ribbon during October, or during any month. It’s OK; I’m not mad. You’re not offending me and probably most breast cancer survivors. But if you like the ribbon, wear it! That’s OK, too.

Last, and most important, I want to say a great big ol’ THANK YOU to all of you who’ve been raising money for breast cancer research. It’s because of you that I believe I’m alive today.

Thank you for your prayers, for your kind words, for your support. I’ve been blessed during my journey; I have an amazing family, awesome friends, excellent doctors, and a strong belief in God. And I’ve also been blessed by people that don’t know me personally, but have taken time out of their lives to keep me in their prayers. Although we may not have met in person, you’ve signed my guestbook, and sent me supportive messages. I’ve shared my journey with you, and I feel blessed that you cared enough to read this throughout the past 2 years.

Somehow, thank you doesn’t seem to be enough, but it’s all I have.

I still have reconstruction to finish, and of course, I’ll keep you posted. And you can “like” my Facebook page (that makes laugh – people like me, they really like me – giggle). I have it set up so that you can post your message to me. I’d love to hear your story, your thoughts, or anything that you’d be willing to share with me.

With Love and Gratitude,


The Brunette Lucy

If you'd like to check out my latest, it's called, "The Age of TMI". If you've ever been on your land line, when your cell rings, then your call waiting beeps in, you'll relate to this silliness.

Tuesday, October 11, 2011

Mastectomy - the hardest decision (& probably the best) I ever made

I was diagnosed in October of 2009; I had three tumors in my right breast. One was very large and had grown quickly. They also detected something on my left, but it was smaller. So when Dr. Roderick Quiros sat down, looked me in the eyes and told me that he recommended a mastectomy on the right and a lumpectomy on the left, I felt like I’d been punched in the stomach. Matt was sitting next to me, and I could almost feel the wind being knocked out of him as well.

You know, I’d seen ads for breast cancer and at that moment, I remembered watching them, thinking, “that has to be the worst thing for a woman to be told”; never dreaming that those words were going to be spoken to me.

I knew Matt was taking it really hard; not that I would lose a breast, but that I could lose my life. So I tried to be as positive as possible. Dr. Quiros recommended that I get a tissue expander put in at the same time as the mastectomy, so I clung to that. There would be something where my breast had been.

I went online, hoping to get an idea of what I’d look like after surgery. There are many courageous women out there; I wish I could thank them for showing what a woman looks like after her breast, or breasts, have been removed.

Still, that doesn’t prepare you for the real thing.

I can’t say that I’ve never been more scared, because I have. My son isn’t supposed to be alive. He had many birth defects, and out of only 51 documented cases, only he and one other baby survived. That was the scariest time of my life; this came in a close second, though.

The day of surgery was Hell on earth. I thought I was going to go in the hospital, be put out, and wake up with everything done. But that’s not what happened.

The small lump on the left side needed to be identified prior to surgery, since it was so small. I didn't realize how it was going to happen, and looking back, that was a really good thing.

Normal mammograms compress your breast, and it’s uncomfortable, but as soon as they take the image, it’s released. To locate this small tumor, the machine compressed it until it was almost flat. They couldn’t see it. They turned me & posed me in different directions. Each agonizing time, they flattened my breast almost completely and couldn't let the pressure up for 20-30 seconds. Still, they couldn't locate it.

This went on for what seemed an eternity, but I believe it was only half hour. It hurt so bad I was openly crying, and the girls wanted to stop. I wouldn’t let them, though, because I knew it was important to get even that tiny spot out of me; we pressed on.

Finally, they found it, and told me that they were going to stick a needle from underneath the breast to mark it. I had to stand there with my breast almost flattened, while they inserted a long needle inside. And I mean, it was a long needle – a good twelve inches.

I thought the imaging was done, but it wasn’t. I had to have another imaging procedure. Some type of dye inserted, and I was put in a machine and posed in different positions, holding completely still. With 12 inches of a needle sticking out of me. Finally, after being there for hours, it was time to take me to surgery. At that point, I was actually looking forward to the anesthesia.

Right before they put me under, I remember crying.

After the surgery, it didn’t look too bad. I mean, they’d put the tissue expander in, so it looked like I still had a boob. A small, nipple-less boob, but there was something there. I thought that it might not be so bad after all.

I came home, and set about getting ready for Christmas. There was supposed to be snow on Christmas Eve, and I was really looking forward to it.

On the 23rd, however, I started feeling bad, and began running a fever. At times, it spiked to 104.1. Dr. Morrissey originally thought that it was probably due to the last drain tube that he’d removed. I was in a lot of pain and had a lot of swelling, so Dr. Morrissey wanted to surgically reinsert the drain tube. Surgery was set for Tuesday, the 29th.

When I awoke, the tissue expander had been removed. Turns out, I had contracted MRSA during the original surgery, and the six days of fever and pain were actually a raging infection. Dr. Morrissey remarked that he’d never seen anything like it.

Swell. Not only did my real boob try to kill me, now its fake cousin was giving it a shot!

Due to it, I spent the next two months in and out of surgery. Just when we thought the MRSA was gone, it came back.

Finally, Dr. Morrissey admitted me to the hospital, and left the wound open. I was on IV meds, and they cleaned the wound twice daily. Gotta be honest; it hurt. But it was finally over; it was time to begin chemo.

The thing is, my mind was occupied during those months. I was too busy trying to stay alive, I didn’t notice the fact that not only wasn’t there a little bump anymore, there was actually an indentation. I finally took a good look at myself and it was hard. There’s really no way to explain that feeling, other than, well, horror.

Due to all the surgeries, my scar was about half an inch wide; my breast bone protruded a little, but below it was an indentation. I knew I was going to lose a breast, but I didn’t think I would be concave.

I hated to shower because I could see what I thought of as a mutation. Getting dressed was another reminder; especially putting a bra on. The American Cancer Society was awesome, and they gave me an allowance to purchase a breast form (I didn't hear anything from Susan G. Komen Foundation - but that's a story for another time).

Gotta be honest, though. When I saw it, I had to laugh. The thing was basically triangular, which was supposed to mimic how a natural breast would sag a little. It was weird; and being the dork that I am, I’d whip that bad boy out to show anybody who wanted to see it.

Still, I felt different. Almost like a freak. The thing is, I know that who I am isn’t tied to whether or not I have breasts. And in fact, how shallow am I, when we have soldiers returning from battle missing limbs. They have to deal with learning day to day tasks all over again. And here I am, missing a breast. I’ll bet that women who’ve come home minus a leg would trade places with me in a heartbeat.

The logical, rational part of me knows that; but we women are emotional creatures. It’s a real struggle for me; I wish I could be as self confident as some of the other women whose stories I’ve read. I actually saw a blog where a woman was topless on a beach after having a double mastectomy and no reconstruction. I was blown away that this beautiful woman was so comfortable in her own skin, she didn’t feel the need to undergo reconstruction surgery. I hope I’ll get to that point.

The thing is, though, that had I not had the mastectomy, I might not be alive. In fact, I met several women during my treatments (chemo & radiation) that had lumpectomies, only to find out that their cancer had metastasized. Now they’re in fights for their very survival. They felt that had they undergone complete removal, they might not be in the situation they found themselves in.

Not being a doctor, however, I have no idea of whether or not their decision to save their breast was the reason their cancer had spread. I’m just reporting what I was told; what other women believed.

Either way, I’ve been declared cancer free, and I plan to keep it that way. I’ve also begun reconstruction. My new plastic surgeon, Dr. Neal Topham, is a genius. Dr. Morrissey suggested that I see a micro surgeon, due to all the complications. He didn't think he could do as good a job. To me, that's the mark of a really good doctor - he knew his limitations and wanted only what was best for me.

Dr. Topham did what’s called a DIEP (Deep Inferior Epigastric Artery Perforator) flap. What that means is he took tissue, fat and skin from my lower abdomen and created a new breast. We’re calling it my bionic, baby, Barbie boob. It’s bionic since he made it better, baby because it’s so new, and Barbie because it doesn’t have a nipple.

I have to say that the scar is pretty intense, but they say it’ll fade in time. Man, I hope so. Still, it’s much thinner than the half inch scar I’d been sporting for a year and a half!

One of the perks of this procedure is a tummy tuck. If you’ve had children, and especially if you had a c-section, you know that there’s excess skin in our abdominal region. Sometimes, it’s almost impossible to get rid of, no matter how much you diet & exercise. So, that was awesome.

However, this is only the first in a three part process. Next up, since Dr. Quiros was taking no prisoners during the lumpectomy, a large part of my left breast was taken, causing it to look much smaller than before. On January 12th, I’m having surgery to both lift it, and insert an implant. My two girls will once again be the same size – woo hoo!

The third part is making a nipple for my bionic, baby, Barbie boob. After they create it, they’ll tattoo it to match ol’ lefty. I should have a complete set this time next year.

I’m also hoping that by this time next year I’ll have gotten over my feelings of inferiority. I hope that I’ll be able to look in the mirror and not cringe at the sight of my chest. I’d say I’m on the way to accepting my new “normal”, but it’s still a process. I’m taking it one day at a time.

The thing is, I can take it one day at a time. I’m alive and I plan to stay that way for a very long time.

Besides, Matt wouldn’t know what to do with himself without me around to annoy the living daylights out of him. He doesn’t seem to mind it as much when I do dumb stuff or spend money on something trivial.

He’s actually happy that he can still say, “Lucy, you got some ‘splainin’ to do!”

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