Model prep

Posted: March 30, 2012 | Author: | Filed under: breast cancer, pets | Tags: , , , , , , , | 4 Comments

The American Cancer Society’s Couture for the Cause is fast approaching. As in tomorrow. I’m experiencing equal parts excitement and terror about modeling in the fashion show. Since this is my second time to model in the Couture, the excitement should be outweighing the terror, but alas it is not. Ask me tomorrow which feeling prevails. Hopefully it will be excitement. Sadly, all the fun and triumph surrounding this event are overshadowed by the unexpected death of our sweet dog Harry. It has been a long, hard day at our house, following a sleepless, sad night. I can only hope tomorrow is better. I’ll have a couple of my besties modeling with me this year, so it will be a great comfort to have them backstage and on the catwalk with me.

Getting ready for the show is pretty easy, assuming there are no big bumps in the road like the one we’re experiencing as we grieve for our dog. There’s the model survey to fill out (height, weight, hair & eye color, favorite designers, personal style, etc) and a full-length photo to submit. Then show up for a fitting of the outfits I’ll be wearing; show up for rehearsal with finger- and toenails painted red; and show up a few hours early for the event to have my face painted and my hair teased and tousled by a team of professionals. Oh, and procure the items on my “bring list,” which this year include a pair of brown platform sandals, a pair of black peep-toe platform heels as high as I can manage, and a strapless bra. Last year, I modeled between mastectomy and reconstruction, so there was no need whatsoever to bring a bra, strapless or otherwise.

In fact, last year I modeled having been sprung from the hospital just a few weeks before the big event. That nasty post-mastectomy infection damn near kept me from being able to participate in the most terrifying and most amazing experience I’ve ever had. This year, I’ll skip the hospital part and head straight for the show.

Last year, I had no idea what I was getting myself into but was coaxed and cajoled by some people I really love (that means you, Yvonne) and some people I’d never met but who assured me I’d be perfect, just perfect. All of the other models were cancer survivors, save a dozen or so real-life models to really showcase the outfits and lend an air of professional gravitas to the event. There were several other breast cancer survivors among the non-professional models, and they happened to be a lot farther along in the cancer “journey” than this fledgling model was. Every single one of them was done with reconstruction and didn’t bat an eye before showing me their results. Only at an ACS event would it seem perfectly normal to be closely examining a complete stranger’s breasts, but that’s how cancerchicks roll. 

Needless to say, last year I was a teensy bit unsure about taking the stage and strutting my stuff on the catwalk among hordes of people who’d paid a lot of money to get into this gig. My body was a train wreck, my mind was somewhere between blown and trying to follow along, and my emotions were all over the place. I’d managed pretty well at that point to wrap my head around the cancer diagnosis, but dealing with the infection that threatened to be an unsolved medical mystery — not so much. 

Hooray for being in a muuuuuuuuch better place this time around.

And hooray for actually liking the outfits I’m going to model on Saturday, and for hopefully not having a mink headwrap this time around.

While there is a lot of prep work that goes into pulling off a successful Couture show, thankfully most of it is done by others. I’m pretty sure there’s not another cause I’d be willing to model for, even though it gives me an excuse to buy new shoes. All this fashion show prep reminded me of a story Trevor shared with me a while back, about what the Victoria’s Secret models go through before their big fashion shows. Seems the Telegraph followed VS model Adriana Lima leading up to her fashion show. Lima is a bit more serious about prepping for her show than I am for mine:

She sees a nutritionist, who has measured her body’s muscle mass, fat ratio and levels of water retention. He prescribes protein shakes, vitamins and supplements to keep Lima’s energy levels up during this training period. Lima drinks a gallon of water a day. For nine days before the show, she will drink only protein shakes – ‘no solids.’ The concoctions include powdered egg. Two days before the show, she will abstain from the daily gallon of water, and ‘just drink normally.’ Then, 12 hours before the show, she will stop drinking entirely. “No liquids at all so you dry out, sometimes you can lose up to eight pounds just from that,” Lima says.

Say what??

I can assure you that I will most certainly not stop drinking entirely before my show. If anything, I’ll probably be drinking even more than usual. I will most definitely raise a glass and send up a toast to my sweet dog who is no longer waiting to greet me after my big event.

Back among the living

Posted: October 28, 2011 | Author: | Filed under: Uncategorized | Tags: , , , , , , , , | 9 Comments

I’m happy to report that today is a much better day than yesterday’s barf-o-rama. I lost count after the puking reached double digits, and admit to a moment of panic when I realized I hadn’t kept anything down all day. Not even a pretzel. I did learn that there is quite a hierarchy in grossness of what comes back up — some food items are way more disgusting than others when vomited up. And that’s all I’m going to say about that. By 9 pm I decided to throw in the towel and just go to bed. I won’t say I slept especially well, but I didn’t throw up any more so I’m calling it a victory.

The surgery was successful. Very successful. My doc achieved something I honestly didn’t think was possible — he sculpted, tucked, cut, and stitched to create exactly the look I was hoping for, but didn’t think would happen.  The shape and symmetry are both very much improved, and instead of an elliptical uniboob, I now have two distinct and rounded boobs.  My port is gone, and the ever-thoughtful doc even injected a little bit of fat into the port-removal site because sometimes after the device is removed, the skin collapses a bit to create a divot. But not for me, thanks to my forward-thinking surgeon. How nice is that?

I’m pretty battered and sore, and the port-removal site hurts worse than I expected, but I’m happy. I even told my doc this morning that as much as it pains me to admit it, he was right all along. He was right, I was wrong: he was indeed able to fix my messed-up chest, and his artistry certainly prevailed. I never expected the DIEP surgery to result in one-and-done results; I knew that revisions, plural, would be necessary. But I had fallen into the abyss of wondering if things would ever look right again. I can’t tell you how happy I am to report that I’m no longer in that abyss, and all is right in my world.

I’ve got to lay low and be very still for a while, as everything that was sucked out and relocated settles in. Thanks to everyone who checked on me, and thanks for all the prayers and good wishes sent from near and far.

CANCER SUCKS

Posted: October 20, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , | 8 Comments

Cancer is so not fair.

It just sucks.

It’s such a bitch.

I hate it.

One badly timed comment; one errant remark.

That’s all it takes to go from normal to an emotional wreck. Suddenly I’m on the verge of tears–in front of other people, which is awful, and in front of one person I’d rather take a beating than cry in front of. Pride is a terrible burden sometimes.

Just one comment.

All was going according to plan at my pre-op appointment until one little utterance, slightly misinformed on the doctor’s part and hugely misinterpreted on mine, sent it all akimbo.

I was ready for this next revision. Six days and counting. Schedules rearranged, favors called in, sacrifices made…again.

I had signed up for this revision and was willing to go along with it quite voluntarily, even though it meant more pain and downtime and missing out on some important stuff. Well, important to me anyway: the annual Halloween tennis tournament at our club, which my runnin’ buddy and I won last year and hoped to recapture this year. The rest of the tennis season, for which I’ve only played 2 matches total for the entire season (and lost both, BTW, so suck it, everyone). Our regular Sunday morning match & beer-drinking with our buds Christy and John. Lots of tennis will not be played by me while I recover, yet again from yet another revision. The last-minute Halloween rituals, in which costumes are finalized and trick-or-treat dates are secured. All of this will be superseded by yet another recovery. The everyday, average tasks and duties of a regular life. All put on hold, in pursuit of a normalcy that seems ever elusive, just out of reach.

All I want is symmetry and improved shape to my newly created breasts.

Is that really so much to ask?

I’m well past the point of buying into the BS of “Bummer about the cancer but at least you get new boobs.” That dangling carrot didn’t quite pan out for me. Thanks to the ol’ post-mastectomy infection and a much-more-complicated-than-expected reconstruction known as The Big Dig, the prize at the finish line of my cancer “journey” isn’t much of a prize at all. It’s more a reminder that no matter how skilled the surgeon, no matter how many versions of revision I endure, my body is never going to be the same. It’s never going to look like it did before cancer shat all over my head at the ripe old age of 41.

I’m not stupid. I don’t expect my body to look like it did pre-cancer. I don’t expect my life to be carefree and manageable like it was pre-cancer. But I really didn’t think it would be this bad, this hard. I really didn’t think it would be so bloody difficult to deal with the reality of cancer day in and day out.

Sure wish someone would have warned me.

Because I bought into the “get through the scariest, worst experience ever and you’ll live happily ever after.” And silly me, I thought I was dealing with all the repercussions of the post-cancer life.  I’ve faced the ugliness head-on. I’ve tucked my head and kept on truckin’. I’ve plastered a smile on my face and counted my blessings. I’ve poured out my feelings — good and bad — in an effort to “deal with it.” I’ve done the research and shown up for all the required appointments. I’ve endured more poking, prodding, and pinching. I’ve suffered through humiliations large and small. I’ve managed the pain and the crazy emotions. I’ve found myself smack-dab in the hell that is chemically-induced menopause and lived to tell about it. I’ve made a point to take my medicine, literally and figuratively, even when it tasted like poison and burned my insides to a crisp. I’ve learned to accept that schedules don’t matter to cancer, that there is no way to predict or prepare for the twists & turns that comprise this cancer “journey.”

I thought I was dealing with it all, and dealing with it quite well.

Silly, silly me.

Thank you, google images. 

Recovery mode

Posted: August 29, 2011 | Author: | Filed under: breast cancer, Surgery | Tags: , , , , , | 9 Comments

Ugh.

That’s about all I have to say.

Recovery is tough, and it’s not one of my favorite things. It’s nowhere to be found on the list of my favorite things. I’m a terrible patient — impatient, restless, and intolerant of my dependent state. However, I’m quite the pro at the recovery process now, after multiple surgeries, and don’t fight it as much as I did in the beginning. I’m not going to win patient of the year award in this lifetime, but I’m not gnashing my teeth over the process this time around. Baby steps.

In addition to the regular wear-n-tear on the old body that is anesthesia and surgery in general, I’m healing from a couple of very specific “injuries” from the procedure. Disclaimer: this picture is pretty gross, so if you have a weak stomach or get sicked out easily, scroll down now. 

That’s the bruise on the back of my leg as of Friday, two days post-surgery. I’ve got a matching one on the back of my other leg, but didn’t want to post two pics of such a gross site. The bruising has actually migrated downward in the last few days and is now approaching the back of my knees, so it’s even bigger than what’s shown above. Rather than incite a public riot (and because I feel like hell), I’m staying home and not subjecting anyone to seeing this as they’re out & about taking care of their business. It is triple-digit hot, though, so I’m wearing shorts. Yesterday the high in Houston was 107, that’s right 107, which is mighty hot even by Gulf Coast standards at the end of August. The bruising is still tender enough that even having clothes resting against my skin is painful, but I’d scare myself if I went sans clothes, so I’m sucking it up.  I am utterly amazed that people put themselves through the lipo process willingly and simply in pursuit of vanity. Not judging just saying “wow.”

The little red spot in the photo is the site of a couple of stitches, and they itch and pull a bit as they heal. There are 8 or so spots on my legs and chest; I haven’t counted all of them because frankly I haven’t been brave enough to look that closely. I also have 4 open “poke holes” that drained a bunch of yucky stuff the first two days but are healing up nicely now. I expect the stitches will come out sometime this week.

A slight complication arose yesterday: I didn’t feel good. A slight fever, sore throat, extreme fatigue, and overall malaise ruled. My doc asked me to call him over the weekend, especially if the fever didn’t go away. I appreciate how accessible he is to his patients, even on the weekends.  When my fever spiked yesterday afternoon and didn’t break, and when my skin at the original infection site became red, warm, and streaky, I knew I needed to call him but didn’t want to interrupt my weekend either. I stayed in my jammies and laid around all day yesterday, and when I didn’t feel a whole lot better this morning, I called.

We had a short, purposeful conversation that started with me saying, “I don’t think we need to panic” and ended with him saying, “I have surgery in an hour so come in right now. ” Amy and I appeared in his office post-haste. He said he thought about checking on me, but he knew that I would “start asking what about this? and what about that? and what are we going to do next? and when are we doing to do it?”

Really? Me?

That sounds so unlike me (ha!).

He knew that if I was in a bad way, I would call him, and I knew that it could wait until today. No need to go getting ahead of ourselves and risk getting myself admitted to the hospital on a Sunday night.

The fever was down this morning, and the red, warm, and streaky spot looked a little better. The pain is still there, but not as intense as yesterday. It feels like a hot, localized pinch. If I didn’t know that feeling so well from my multiple run-ins with post-surgery infection, I might think one of the stitches was pulling or it was just part of the healing process. But I know better.

After much poking and prodding of the hotspot, we decided to let it be and wait and see. I thought for sure he’d want to open it up and see if there was fluid to collect and culture, but he said nope, not at this stage, let’s give the newly rounded chest a chance to settle this on its own without us intervening. He extended my course of oral antibiotics just to be on the safe side, and as much as it pains me to admit this, I agree with him on both fronts. Really, we’ve done everything we can to prevent infection: a week of pre-surgery prophylactic antibiotics, 2 bags of 2 different IV antibiotics during the surgery, more oral antibiotics after surgery, the most thorough scrub-in process in the history of modern medicine, and over-the-top precautions to preserve a sterile field in the OR. At this point, if the infection can combat all of that, I will concede. But I will be a very sore loser.

The one thing we’ve got going for us in the anti-infection camp is the fact that this last surgery didn’t involve any foreign bodies. No tissue expanders and no implants, just good old-fashioned fat. It was sucked right out of my thighs (hence the super bruises) and injected right into my sunken chest. He carefully explained the fat-extraction process to Trevor and Amy while I was in the recovery room. 

photo reprinted with gracious permission from Dr S

from the personal photo library of Dr S

The plan is for me to lay low for the next 2 days, check in on Wednesday afternoon, and go from there. If I weren’t so tired and puny I’d be saying, “Come on with the healing already!”

Summertime

Posted: June 8, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , | 10 Comments

Summertime, and the living is easy. Sam Cooke said it, well, sang it actually, a long time ago. The fish were jumpin’ and the cotton was high. The girl he was singing to had a daddy who was rich and a mama who was good-looking. All was right in Sam’s world.

Well, the living is easy all right. No alarms waking me up before I’m ready, no lunches to pack. Payton’s lunch is easy: sandwich, bag of baked chips, string cheese, Rice Krispie treat, and a drink. No lunch box, no ice pack — he’s too cool for that. Macy, on the other hand, is quite particular about her lunch, requiring 5 different things, some of which must be washed & chopped and placed into small tupperware. She does at least take the same thing every single day, much like her mama did as a schoolgirl. I had a homemade egg salad sandwich on wheat bread every day of my schoolgirl life, and didn’t care one lick that the other kids thought the egg salad looked gross and the brown bread looked weird. They could have their stick-to-the-roof-of-your-mouth Wonder bread PB&J any day. I was perfectly happy with my gross-looking egg salad on weird-looking bread.

So no lunches to pack, yea. No mountain of school paperwork to wade through, only to find that other than glancing at the grades at the top of the completed work, there’s not a single thing in that mountain that really matters. No racing the clock to get out of bed, gobble down breakfast, get dressed, and get out the door. No meanie mom enforcing a highly unpopular bedtime so the little darlings don’t act like feral hogs in the a.m. Last but not least, no school projects. Oh, how I despise the projects. After 18 years of living with the original slacker student, who did minimal work and gasp! even skipped school projects altogether yet made good grades and somehow managed to become a contributing & successful member of society, my opinion on school projects has definitely changed. Changed to hatred, that is. They’re messy, time-consuming, inane, and require ME to go to Hobby Lobby AND help with said project when I could be playing tennis.

Ok, rant is over.

I certainly hope I didn’t offend any teachers out there. If I did, please direct your hate mail to my husband, the original slacker student. It may take him a few days to reply, because he’s busy running a software company. I’m not sure he could have risen to such heights and attained 2 graduate degrees without that pivotal diorama he made in 3rd grade at Jenks Elementary.

Ok, now my rant is over.

So we are blessedly free of the strict schedule imposed by the Fort Bend Independent School District, and most thankfully free of the blasted school projects. We can go where we want to go when we want to go there, stay up late, and eat lunch when we please. All that sounds great, right?

Except for one tiny detail: I don’t do well with unstructured time. Remember me, the busy-body? I don’t blossom with a lot of downtime. It’s day 3 of summer, and I’m already feeling a little itchy, a little twitchy. As much as I dislike the hustle & bustle of the imposed school schedule, it does keep us on track. And I like that. I need that. I would have been great in the army.

Lots of people enjoy their downtime and get into being lazy. For me, laziness makes me feel icky. I really like having a to-do list every day and relish the feeling of being productive. Some people were laughing at me that on the first day of summer, I cleaned out the garage, did 4 loads of laundry, vacuumed the entire downstairs, and bagged up discarded clothes for donation. Before lunchtime.

Now that my kids are a little older and a bit more independent, summer isn’t as stressful because I can still get my stuff done without having to watch them every second. The ever-present possibility of a toddler finger in a light switch cramps my style and interferes with me crossing things off my to-do list. With the luxury of semi-independent children, I’m trying to relax more this summer. That, and the burning desire to suck every drop of summer this year, since last summer was such a bust.

Last summer, I was not only recovering from a bilateral mastectomy but also playing hostess with the mostess to a nasty, long-staying bacteria that exploded into a messy, hard-t0-diagnose-and-even-harder-to-eradicate infection. I spent some extra time in the hospital, multiple times and multiple hospitals, and had a few extra surgeries. I weathered the ups & downs of being an impatient patient, and learned the hard, hard lesson that no matter how nicely I treat my body, it can and will betray me. As my sweet mama would have said, “That is rude, crude, and socially unacceptable.”

Last summer I missed out on a lot, thanks to Mr. Mycobacterium. This summer is going to be different. I’m going to spend some idle time, and hopefully learn to like it. I’m going to float in the pool with my kids and my crazy dog, and not worry about the laundry piling up or the dishwasher needing to be emptied. I’m going to teach my kids to cook, and not stress over the messy kitchen. I’m going to drag them away from the TV and computer games and into the museum district, and not get discouraged when they complain about how boring it is.

This summer, I’m going to relish being home instead of in a hospital, staring at this: 

I’m going to delight in the fact that I don’t have any of these attached to me:

I’m going to do a little dance about the fact that my sling bag isn’t carrying any of those icky things that are no longer attached to me:

and that I no longer need a collection of these to catch the collection of gunk that accumulates in those things to which I’m not longer tethered:

I’m going to breathe a sigh of relief that I don’t have any of these stuck to me:

I’m going to offer up a special nod to the fates that I won’t be going here:

to get more of this:

However unstructured this summer is, it’s gonna be great. Summertime and the living is easy.

National Cancer Survivors Day

Posted: June 5, 2011 | Author: | Filed under: Uncategorized | Tags: , , , , , , , , , , , , , , , , , | 9 Comments

Well, we have Mother’s Day and Father’s Day, Grandparents’ Day, and even Bosses’ Day for pete’s sake, so why not Cancer Survivors Day? Makes perfect sense, as there are millions of us around the world. I do wonder, though, why there’s no apostrophe in the title. I double-checked it on the NCSD website and sure enough, no apostrophe.

It’s today, by the way — I feel like I should wear a shirt that says “Kiss Me, I Survived Cancer” but I’m not really the kissy type. I guess I could wear my “cupcakes” t-shirt, which I love, but then it seems like my “cupcakes” get the credit for kicking cancer to the curb when really, they were the culprit in the first place. Without them, I never would have had breast cancer, so I’m not giving them the credit for having survived it. I will wear it to the gym, though, because I love the look on people’s faces as they read it, then do a not-so-subtle double-take at my chest.

So what is National Cancer Survivors Day all about, anyway? Probably something a little more meaningful than wearing a snarky t-shirt and giggling to myself as the shockwaves from said shirt ripple through the gym. According to the NCSD website,

“National Cancer Survivors Day® is an annual, treasured worldwide Celebration of Life that is held in hundreds of communities throughout the United States, Canada, and other participating countries. Participants unite in a symbolic event to show the world that life after a cancer diagnosis can be meaningful and productive.”

Well, I’m certainly proud to be part of an annual, treasured worldwide celebration of life. Although I think I missed the parade. Considering how many people are affected by cancer, you’d think this day would get a bit more press. There’s probably a Lifetime for Women movie about it and I missed that too.

As usual, I have lots of questions about this annual, treasured worldwide celebration of life. Who qualifies as a survivor? And when does survivorship begin? What time was the parade? The National Cancer Survivors Day Foundation defines a “survivor” as anyone living with a history of cancer – from the moment of diagnosis through the remainder of life. I think it’s perhaps a bit more personal than that. I also think it’s more than just surviving cancer. I also survived a nasty infection and a nearly  year-long regime of some pretty bad-ass antibiotics. I survived a complicated and intense reconstruction process, and I survived yet another long, hard recovery.

I considered myself a survivor as soon as my mastectomy was over. Surgically removing the tumors, and thereby the cancer, from my body was when my status changed from “regular person” to “survivor.” So for me, I became a survivor in the late afternoon of May 13, 2010. Although I certainly didn’t feel like much of a survivor at the time, bandaged and battered, stitched up and sore. Moving my body at all was a seemingly unattainable feat, and raising my arms high enough to put chap stick on my lips was definitely unattainable. I wasn’t able to slick my own lips for a day or so.

At the time, I had no concept of what a double mastectomy truly meant or looked like. So focused was I on ridding the cancer that I gave zero thought to the aftereffects of the surgery. Even now, in the hazy afterglow of just one year’s time, I struggle to remember exactly what I looked like after that first surgery. In fact, when Trevor gave me The SCAR Project book for my birthday a few days ago, I looked at the portraits of mastectomied women and asked, were my scars vertical or horizontal? For a brief moment, I couldn’t remember. (They were vertical, BTW.)

Deborah Lattimore

That’s why I’m so grateful for things like The SCAR Project and for women like Deborah Lattimore. Like the women who were photographed for The SCAR Project, Deborah Lattimore didn’t want to forget what she looked like after being mastectomied. This defines a survivor, IMHO: facing a shitty situation with not just courage but with moxie. Reading Deborah’s blog, I’m so impressed and moved and in awe of her take-no-prisoners attitude. I immediately felt a kinship with her as I read what she wrote about her post-cancer silhouette soon after her bilateral mastectomy: “my body is still ‘re-architecturalizing’ and will for the coming year. eventually my chest will be completely flat and the scars will be an even line. i really love my skinny small body!” Cheers to Deborah on this annual, treasured worldwide celebration of life. Wish I could tell her happy National Cancer Survivors Day to her face, and to bask in the supreme power of a strong, confident, self-assured woman who tells cancer to bugger off then shows the world the true face of a survivor. No padded bras, no prostheses here. Not that there’s anything wrong with padded bras or cutlets. How we face the world post-mastectomy is an immensely personal decision, and I in no way want to imply judgement on how any woman makes that decision. For me personally, I applaud women like Deborah who celebrate their mastectomied bodies and view them as a badge of honor. In our breast-obsessed culture, this is no easy thing.

So happy National Cancer Survivors to everyone. I’m thinking we should all have cake. What kind of cake is appropriate for NCSD? Something festive, for sure (you know how I love celebrations). This one is nice:

Love the colors, but the pink butterfly kinda creeps me out.

Maybe this one, then:

Nah, I’m not much of a cat person, and it’s not a birthday cake I’m after, although I do love the idea of the cat eating a fish-shaped cake. Maybe we survivors should eat a tumor-shaped cake. Ewww, gross. Never mind.

Ok, so something breast-cancer related:

Or not. Definitely not.

This one is pretty, and the lemon filling looks yummy:

This one is hilarious, although not appropriate for the annual, treasured worldwide celebration of life:

Maybe something from this bakery:

Surely they’d have just the right kind of cake for the annual, treasured worldwide celebration of life. Something like this, perhaps?

What not to buy me for my birthday

Posted: May 27, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , , , , , , , , | 14 Comments

If you’re still searching for the exact perfect gift for my upcoming birthday, here’s a tip: don’t buy this.

promisemefragrance.com

It seems the marketing machine at Komen is looking to get a little more mileage from CEO Nancy Brinker’s book by cross-promoting a Promise Me perfume. Thanks to my blog friend Katie at Uneasy Pink for bringing this to my attention.

The more I learn about the Komen organization, the more I resent the “for the Cure” part of its name. IMHO we pink-ribbon girls do owe a debt of gratitude for the de-shaming of our disease compliments of Komen, but I don’t yet see what the organization is doing “to end breast cancer forever,” as it says in its mission statement.

komen.org

We all know the story: Nancy Goodman Brinker promised her dying sister, Susan G. Komen, she (Nancy) would devote her life to ending  breast cancer forever. Suzy was diagnosed in 1977, in the dark ages of BC, and sadly she died from the disease at age 36, leaving behind 2 young kids and a grieving family. Give the Goodman family credit: they channelled their grief and put it to good use. In 1982 Nancy’s promise became Susan G. Komen for the Cure® and “launched the global breast cancer movement,” whatever that means.

Komen says that today it is “the world’s largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures.”

Perhaps Komen is best known for its Race for the Cure®, which has raised a ton of money and Komen claims to have “invested more than $1.9 billion to fulfill our promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world.” I love the idea of an army of pink in races across the globe. Walk, run, push a stroller, whatever, but get kitted out in pink and raise some serious cash. No argument from me on this one.

I wasn’t well enough to do the Houston race this year, but several people I know did, and the race was a success, financially and from a feel-good standpoint.  One of my sweet friends, Paula, did the race in Salt Lake City and was kind enough to put my name on her back, something that touches me to the depths of my soul.

I have no argument with Komen’s claims to be the BC authority, nor with the money raised. However, it does bug me that Komen’s quest for “the Cure” has been so fruitless. While I very much appreciate Komen making BC the most glamorous cancer, where is the Cure? Komen has been working since 1982 to find it, and yes it certainly is a complicated bugger, but I’d sure like to know what progress has been made.

Forgive my pessimism, but I don’t see what Promise Me perfume is going to do to find the Cure. Katie was kind enough to break down the math on Komen’s latest marketing cash cow, and basically here’s how it plays out:

A 3.4-oz bottle of Promise Me Eau de Parfum sells for $59.00. Of that, 13.5% goes back to Komen , but only $1.51 per bottle will be spent on research.

No, that’s not a type-o.

$1.51 a bottle goes toward research.

Now, I’m not going to get into the many ways in which this is completely whacked, but suffice to say that $1.51 a bottle isn’t going to find “the Cure.”

I’ve looked at Komen’s figures before and was shocked to see how precious little is devoted to research. I’ve heard survivors who do the Race for the Cure complain that every penny of the entry fee goes to cover administrative expenses. Again, where is the Cure?

At the risk of sounding like the granny in the old-school Wendy’s commercials who asked “Where’s the Beef?” I do wonder where’s the Cure.

googleimages.com

A quick peek at the charity navigator website talks a lot about Komen’s program expenses, fundraising expenses, and administrative expenses, with nary a mention of research.

Thus, I will not be buying the new Promise Me perfume, no matter how seduced I am by its “alluring Floriental fragrance combining classic elegance with a modern twist.”

I don’t even know what Floriental is, but I know I don’t want it. Even though its “initial impression is fresh and uplifting.” I can get fresh and uplifting from a bar of soap, thank you very much.

The marketing material claims that “as the fragrance becomes one with your skin, the floral bouquet blossoms in the heart, revealing sensual femininity.”

Oh, so that’s how I get my sensual femininity back after having both breasts chopped off? By spritzing some Floriental toilet water to lend “warmth and opulence and envelope the senses with a long-lasting trail”?????? How about find the Cure, so women like me don’t have to go through what I’ve been through? How’s that for an idea?

Maybe the “top notes of mandarin, bergamot, and blood oranges” blend nicely with the “base notes of white patchouli and creamy musk” to accomplish a good scent, but if you know what “sparkling yuzu” is will you please let me know? And tell me what it smells like.

Because I think it’s the smell of innocent consumers being hoodwinked.

You’ve got 5 more shopping days until my birthday. Don’t bother with the Promise Me perfume.


Tennis time

Posted: May 20, 2011 | Author: | Filed under: breast cancer, drugs, infection, tennis, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , | 10 Comments

Today’s the day, people.

I’m paying a call on my true love. Nope, this isn’t a tell-all expose a la Arnold Schwarzenegger.

It’s tennis.

Finally.

I’ve been cleared by my favorite doc to start playing again. To ease back into it and with specific instructions to stop in my tracks if I feel even a tiny pull in my 17-inch-long belly incision. That super-long, super-bad incision is healing up quite nicely, and it’s my job to guard it and baby it.

When I got the green light from my favorite surgeon, I asked his nurse  to please put a note in my file and have him sign it to that effect. A permission slip of sorts, so that when I see him again in a couple of weeks and mention tennis, he doesn’t forget he’d given me the go-ahead. The last thing that man and I need is another argument. Although, it has been a while since we had one….

With the tennis ban being lifted, I realized that I haven’t so much as picked up a racquet since The Big Dig, nearly 3 months ago. In fact, I had to dig around in the garage for my tennis bag. Sadly, it had been consigned to the garage instead of riding shotgun like normal, and it hung on a hook, quite forlornly, I might add, all this time. Over the course of almost 3 months, things like stadium seats and insulated cooler bags were hung in front of my beloved bag, and it took on the role of wallflower instead of constant companion. I had to take my racquet out, just for a sec, and hold it in my hand. Just like old times. 

Today’s return isn’t full of the fanfare the met my return to the court last fall, after finally triumphing over the God-awful post-mastectomy infection and all its myriad complications. You loyal readers know the story so I won’t bore you with the details yet again, but suffice to say that the bilateral mastectomy would have been enough, but the nosocomial infection that required 3 more surgeries, nearly a month in the hospital, and endless antibiotics was really enough.

No fanfare, because while returning to tennis after the mastectomy and infection mess was a lot, but it’s easy compared to recovering from the DIEP surgery. Good thing today is just a 1-hour drill, which is the perfect venue for me to see if I remember how to swing that racquet. I’m not giddy with excitement like I was last fall, because the cautious side of me is bracing for disappointment. For this return to not quite work out for me. Although I’ve been cleared, there’s no guarantee that my body is on the same schedule as my heart & mind, and I may well be met with resistance from the battle-weary bod.

See, this is one of the unseen side effects of a cancer diagnosis. Even after getting through all the hard stuff–comprehending the devastating news of diagnosis, all the gut-wrenching decisions, the surgeries & hospitalizations, the never-ending antibiotics & their grueling side effects, the cornucopia of doctors’ appointments, the worry & fear & fatigue–I’m still shell-shocked enough to automatically look for disaster. Although the 267 days of oral antibiotics worked and my infection is cured, there’s still a little part of me that assumes the worst. I can’t even remember the last time my skin opened up to let infected fluid escape, yet I still think I feel it a couple of times a week. It’s PTSD for patients.

So my job today is to say screw the PTSD. Can the shell-shocked tendencies. Bust right through the doubt. Ignore the niggling little voice that asks if I’m sure I want to do this.

Hell yes, I want to do this. More than anything else, tennis to mean means I’ve healed. More than being able to go about my busy little life, more than getting back into the gym, more than being able to lift my arms enough and twist my core enough to dress myself. Tennis means I did it. It’s over.

My friend who also battled the breast cancer beast has dusted off her racquet and returned to the game we both love. While I’m unhappy with the unfinished parts of my reconstruction and she’s unhappy with her not-yet-grown-back-in hair, we’re getting back in the game.

I’m going to take the advice of tennis legend Billie Jean King in my post-cancer tennis strategy:

“Ladies, here’s a hint.  If you’re up against a girl with big boobs, bring her to the net and make her hit backhand volleys.  That’s the hardest shot for the well-endowed.”

My friend and I are both differently-endowed than we were before breast cancer came to call, but we survived that unwelcome visit and are ready to tear it up on the court. Even if we both get our asses handed to us in match play, I suspect we’ll both be smiling. Happy to be there, happy to have a racquet in hand, happy to be alive.

The SCAR Project

Posted: May 19, 2011 | Author: | Filed under: breast cancer, cancer fatigue, infection, Surgery | Tags: , , , , , , , , , , , , , , , , , , , , , | 20 Comments

duggal.com

Listen up, people: this is really important.

If you’re not familiar with The SCAR Project, I am happy to introduce you. I’ll be honest: there are some photos that may disturb you, because the photos show “large-scale portraits of young breast cancer survivors,” and present a “raw, unflinching face of early onset breast cancer while paying tribute to the courage and spirit of so many brave young women,” according to the project’s website. While the photos are indeed raw and unflinching themselves, I challenge you to man up and look at them anyway. They’re very tastefully done, no train-wreck gore or gratuitously scary stuff. Get past the cover model who is visibly pregnant and sporting a single-mastectomy scar on her chest. Her belly is beautiful, as it contains a newly forming life, and her scar is a badge of honor.

The project’s acronym stands for “Surviving Cancer. Absolute Reality.”

I like that little double entendre. Well, let’s be honest: I like most double entendres, but this one in particular speaks to me. As does the project’s media slogan: “Breast Cancer Is Not a Pink Ribbon.”

And how.

one of the many "pink ribbon" cards I've received

I’m all for the pink-it-up attitude that the Susan G Komen for the Cure and other organizations espouse. While I think it’s a little weird to see the pink ribbon and “awareness campaign” on products ranging from golf balls to toilet paper and all parts in between, and while I question how much all this awareness really does to actually fight the dreaded disease, I am grateful that Suzy Goodman Komen was the kind of woman who wanted to make a difference, even though she would not be a survivor. Because of her and her family, most notably her sister Nancy G. Brinker, breast cancer went from a shameful secret shrouded in secrecy to the glamour disease du jour.

I’m not interested in getting into the debate in the BC community over how much good the Komen organization has actually done. I completely understand the frustration felt by women with Stage IV BC over the lack of research done on their end of this vicious disease. According to Brinker’s book, Promise Me, the Komen organization has contributed some $1.5 billion to research and community programs, but it seems that precious little reaches the metastatic BC demographic.  I understand, and I struggle to see the connection between awareness and finding a cure. Regardless of funds and allocation, however, I’m grateful that in the 25+ years that Komen has been around, the global breast cancer movement has worked to eradicate the shame that used to accompany a BC diagnosis.  The SCAR Project is following suit.

As I’ve mentioned before, Bestselling author Barbara Delinsky also lost a loved one to BC. Delinsky was 8 years old when her mom died from BC, yet according to her book Uplift, she was in her teens before she learned that her mom had breast cancer, and it was years before her dad could say cancer, and even longer before he could say breast.

One of the women featured in Uplift, Elinor Farber, lost her mom to BC, too, and said when her mom was diagnosed 45 years ago, there were no mammograms, and mastectomies were just short of a butchering. Farber reports that her mom lived more than 30 years after her surgery, but never once spoke of her condition. “Mom endured everything without the support of friends and neighbors, who were not told. My sister and I were both told of my mom’s condition in hushed tones, and we were sworn to secrecy.”

We’ve come a long way.

But not until The SCAR Project have people been forced to see–I mean really see–the impact of breast cancer.

The project focuses on women aged 18 to 35, a demographic in the breast cancer community that is not well represented. Although it’s estimated that more than 100,00 women younger than 40 will be diagnosed with BC this year, and although BC is the #1 cause of death of women aged 18 to 40, the younger members of the pink ribbon club don’t get a lot of press.

When I was diagnosed last April at the tender young age of 40, I quickly learned just how little press we young-uns get. All of the literature I received from my darling breast surgeon featured grey-haired grannies. Not a single image in any literature showed anyone within 20 years of my age. My darling breast surgeon, who is younger than me, agreed that the lit needs a major overhaul, and she teased me about being the one to get the ball rolling. Sure thing. Now that I’m finally off the antibiotics and over the post-mastectomy infection, I’m on it.

Sadly, I’m too old for The SCAR Project; otherwise, I would sign up right this second to be a SCAR model. Well, not right this second but after living in the gym for several months and eating nothing but salad. No dressing. Kidding. After countless doctor visits and multiple hospital stays, I’ve long shed any modesty about disrobing, and I’ve been known to show my scars in all their glory to anyone who asks. The nurses in my various doctors’ offices don’t even offer me the paper gown anymore, because they know I won’t use it.  Save a tree, people; I’m over it. In fact, I may contact photographer David Jay and tell him I’m overage but have an abundance of scars. Way more than the women on the SCAR website. No that it’s a contest or anything.

dailymaverick,.com

Like Komen, the initial goal of The SCAR Project was to raise awareness and money. But it became so much more. Jay explains that he was not prepared for something so beautiful:

“For these young women, having their portrait taken seems to represent their personal victory over this terrifying disease. It helps them reclaim their sexuality, identity, and power after having been robbed of such an important part of it. Through these simple pictures, they seem to gain some acceptance of what has happened to them, and the strength to move forward with pride.”

Yeah! Go girls! This model from The SCAR Project looks like the epitome of a fierce survivor. While no doubt she’s battle-weary and has seen things and faced trials she never thought possible, the mere fact that she participated in The SCAR Project tells me that she is indeed moving forward with pride.

lipmag.com

I’m not quite there yet, personally, with reclaiming all that has been lost to my cancer, but after seeing the women in The SCAR Project, I’m a whole lot closer.

One year ago today

Posted: May 13, 2011 | Author: | Filed under: breast cancer, drugs, food, infection, kids, pets, Surgery, tennis | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 12 Comments

Y’all know I’m a milestone-observing kind of girl. I’ve written about my cancer-versary, about a revelation, about week-old recollections after The Big Dig, aka my reconstruction, and returning to the tennis court after a long absence full of longing.

I’ve written about the anniversary of my sweet mama leaving this earth. That was early on in my blogging, and I hadn’t mastered the art of inserting photos. The photos of her are woefully displayed, and in my free time (!) I need to go back and fix them. She deserves better.

I’ve also observed the end of the worst year of my life. “Don’t let the door hit ya” was my message to 2010 as it went out like a lion. A mean, underfed, on-the-hunt-for-victims lion. Almost halfway through 2011 and I’m happy to say it’s turning out to be a much better year. Course, we didn’t have far to go to make it better than its predecessor.

Back to the current milestone. One year ago today, I said bye-bye to my breasts and was the lucky recipient of a flat–but cancer-free–chest. This was me, this time last year. On this very day (although it wasn’t a Friday, it was May 13th. Having a bilateral mastectomy on Friday the 13th would be cruel).

Trevor snapped this photo of me waiting for my surgery, in the holding pen before moving to a pre-op room. My brain was swirling with lots of thoughts, too many thoughts, and I was likely firing off a quick email to our BFF Ed with some last-minute kid-wrangling instructions. Notice the pink notebook in my bag: my cancer book, full of pathology reports, doctors’  notes, research, and bills. Bills, bills, and more bills. I think the current estimate of the cost of my last year medically is in the range of $260,000. And we’re not done spending yet.

One year ago today, I wish we’d thought to take a close-up shot of my chest instead of the deep wrinkle snaking across my forehead. My chest would never be the same, and would become a major battleground–and that was after the mastectomy. If I’d seen that pic before going under, I would have asked Dr Dempsey, breast surgeon extraordinnaire, to give me some Botox while she was in there. Yikes.

I didn’t know what to expect from the surgery, other than the basics. With subsequent surgeries, I’ve learned that actual procedures are available for viewing on youtube and I’ve watched a few. Gross. But amazing.

All I knew, really, was that I had breast cancer and I wanted it gone. I could have had a lumpectomy, but chose the slash-and-burn option instead. I’m not a half-measure kind of girl, and the idea of just taking a part of the infected breast instead of the whole thing wasn’t anything I ever seriously entertained. Slash-and-burn meant taking both breasts, even though the cancer was only detected in the right one. Only. Ha! Good thing I lost the pair, because the post-mastectomy pathology showed the left one had some problems, too. If you can call an area 5 cm in diameter full of cancerous junk a problem. I can, and I did. Little did I know then, one year ago today, that pretty much anything that could go wrong with my post-surgery self would go wrong. As my nurse practitioner friend Laura says, “Your case certainly has not been textbook.” Truer words were never spoken, but we didn’t know that one year ago today.

Because there were only 3 weeks between my diagnosis and the mastectomy, and because most of that time was consumed with tests, tests, and more tests, there wasn’t a lot of time for freaking out or being scared or crying about my fate. Not that I would have done any of those things anyway. There was a problem, and we were going to fix it. ‘Nuff said. I had a great team–breast surgeon, plastic surgeon, and oncologist– and was in a nationally ranked and highly acclaimed hospital. Course, I’d end up adding a kick-ass infectious disease team, home-health care nurse, a beloved lymphedema specialist, and wound specialists to my team before it was all said & done.

Dr Grimes, my hero

Tammy Sweed, I adore you!

The week before surgery, Payton turned 11

and Macy & I pampered ourselves with a Chinese foot massage.

I squeezed in as much time as I could with my girls

I didn’t know it would be a while before I did anything like this with my favorite girl.

Going into surgery one year ago today, I had no idea that I’d end up spending nearly a month more in the hospital and undergo 3 more surgeries; minor surgeries compared with the mastectomy, and of course reconstruction was way off in the distance, with even more days in the hospital. I had no idea how much I’d miss my kids while hospitalized

and my dogs (and their friends).

I had no idea how many times I’d need the special parking place.

I had no idea how much infinite kindness my friends would bestow upon me. We were on the receiving end of many, many meals delivered to our house, a kindness for which I’m so grateful. The rides to & from my  kids’ activities helped more than I could ever guess. The sleepovers and outings that my mommy friends provided kept my kids’ life normal when everything else around them was off-the-charts abnormal.

My cousin Teri’s hubby Tom made me more than one coconut cream pie. I ate a lot of this

but not nearly enough of this

Keith’s crab towers were chock-full of healing properties.

As was this:

Yes, lots of champagne eased the way from being an average, suburban at-home mom to becoming a statistic. From regular woman to cancer vixen. From got-it-together overachiever to at the beast’s mercy. And my bubbly companion continues to ease the way, from cancer victim to cancer survivor. Cheers to that.

A week after surgery, I began to feel a bit more human and was blown away by my little girl wearing a pink ribbon on her shirt–all her idea, BTW–to school every day.  

I was not enjoying the amount of time spent doing this:

although Pedey enjoyed every lazy minute of my recouperating.

Seeing me in jammies all the time gave Macy an idea: she could raid my jammie drawer and wear them herself. 

I’m not sure I ever got that pair back from her.

I certainly have learned a lot over the last year. Things I never knew I would have to learn, like the difference between invasive ductal carcinoma and in situ carcinomas. Like how a tumor is graded to determine the stage of the cancer. Like cure rate statistics and recurrence stats. Like how fine a line there is between the science of medicine and the art of medicine. Like how fighting a wily infection could be even worse than fighting cancer.

The crash course in all things infection-related was a big education. A very big, most unwanted education. My biggest lesson in this arena is how many unknowns exist. I wanted to know when, where, how, and why I got this infection. No one knows for sure. I wanted to know why it took so long to diagnose it, and why so many drugs have to be involved. I learned that my oncologist could have me all my drugs delivered to my doorstep via UPS. I learned to love vanocmycin and to depend on probiotics. I learned to eat breakfast as soon as I got up, hungry or not, because I needed to time the antibiotics right so they hit an empty stomach. I learned that morning sickness-style nausea doesn’t go away as the morning changes to afternoon and then to evening. I learned that there was nothing, not one single thing, I could put in my stomach to ease that awful nausea. I learned that washing those drugs down with alcohol doesn’t make me feel worse; that in fact it made me feel a whole lot better. I learned to develop a schedule and a rhythm to taking my antibiotics every 12 hours for 267 days. 

I learned that “We’re discontinuing the antibiotics” are the sweetest words I’ve heard in a long time. I’ve learned about the complete and utter relief of dumping my remaining oral abx out, because I don’t need them anymore.

That’s the tip of the iceburg, or what my friend Michele would call “a booger’s worth” of the practical things I’ve learned. The topical aspects of changing one’s status from normal person to cancer patient. Then there’s the other side of it.

There’s the stuff  I’ve learned in the last year about the unquantifiable side of a serious illness. The depth of inner strength required to get through something like this. The well of emotion that accompanies the clinical stuff. The patience and fortitude I didn’t know I had (although I’m still working on the patience part). The measure of gratitude toward the people who’ve helped along the way. The unbridled joy of making new friends in the midst of a shitty situation. The passion for writing, long dormant in the day-to-day of child-rearing, and the love of blogging. The understanding that my doctors are just regular people under those scrubs & white coats, and while they’re full of knowledge, there’s a whole ‘nother side of unknown things for which they make an educated guess and hope for the best. And, I have to admit, how much fun I’ve had getting to know these people in the white coats.

 

While being diagnosed with breast cancer at age 40 certainly does suck, I’m lucky that I made the decision one year ago to not let that diagnosis define me or impede me living my life. There certainly were times in which I was miserable from surgery and infection, and down in the dumps about my limited capabilities during recovery. There were also times over the last year in which I thought for a second I can’t take any more–not one drop more of bad luck, rotten news, and beastly complications. But those times didn’t last long and they did not prevail. Cancer did not prevail. Not over me. No way. Nuh uh. That’s perhaps the most important thing I learned over the last year.

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