If not Komen, then who?

Posted: October 12, 2012 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , , | 15 Comments

Because it’s Pinktober, the month for breast cancer “awareness,” you can’t swing a cat without hitting some form of pink merchandise allegedly deemed charitable and “for the cure.” Now, before all you cat lovers get up in arms, I wouldn’t really swing a cat, it’s just an expression from my neck of the woods. I’m not a cat person and have never had one as a pet, but I believe in animal rights for all critters, including cats.

Before I was diagnosed with the dreaded disease and in the early days of my cancer “journey,” when I thought of BC charities, I thought of Susan G Komen for the Cure. It wasn’t until I became better educated, as a member of club to which I did not want to belong, that I learned  how shockingly little of Komen’s resources actually go toward “the cure.” The much-beloved blogger Rachel Moro of The Cancer Culture Chronicles deserves the credit for my education; to see how beloved she was, click here. Sadly, Rachel died from metastatic breast cancer in February at age 42. Words fail me when I try to explain how instrumental and important Rachel is (present tense very much intended) in the ongoing march toward transparency in BC charities and in dethroning Komen as the go-to breast cancer charity.

Rachel was tireless in her efforts to remove the emphasis from awareness and place it where it belongs: on research. She wrote so eloquently and so passionately:

Education, screening and treatment won’t “cure” my cancer.  Sure, by being “educated” I might be able to find out more about my particular type of breast cancer. By being “screened” I might be able to see if my cancer has spread.  By being “treated” I might be able to keep the cancer I already have under control.  But will any of these activities result in me being cured? No. The only hope that my cancer will be cured, is by research and research alone. The only way that breast cancer will be prevented, given that many of those diagnosed have none of the known risk factors, is through research.  Indeed, the only way we can “end breast cancer forever” is with research.  Education, screening and treatment activities deal with finding and treating cancers we already have, not curing them and not ending breast cancer now or forever.  Period. Spending anything less than the bulk of its resources on research, clearly does not support Komen’s mission of ending breast cancer forever.

I’ve said before that while Komen has done much to eliminate the shame and scandal that once was associated with breast cancer, in the 30 years that the organization has been working “for the cure,” not much has changed. 30 years. No cure. Nothing even close to a cure.

The statistics are alarming. Being diagnosed with cancer is scary enough, but to also learn that advancements toward a cure are nonexistent is terrifying. The American Cancer Society estimates for 2011 predicted that some 230,480 women would be diagnosed with an invasive breast cancer, and an additional 57,650 women would be diagnosed with an in situ breast cancer. For the uninitiated, in situ breast cancers are located within the milk ducts (ductal carcinoma in situ, or DCIS) or breast lobules (lobular carcinoma in situ or LCIS), in the same spot the cancers began. Invasive breast cancers are those that originate in the ducts or lobules but have broken through to invade surrounding breast tissue. The majority of breast cancers are invasive, and many women, including yours truly, find themselves with both in situ and invasive cancers, both at the same time; sometimes in the same breast, even.

The ACS reports that since 2002, breast cancer incidences rates have remained relatively stable. So in the 30 years that Komen has been promoting its pursuit “for the Cure” and in the last decade of ACS records, not much has changed. What needs to change is the shift from “awareness” to research. As Rachel so astutely pointed out, the best path “for the cure” is through research. What causes breast cancer? What makes it recur? How can it be prevented?

Now that we know that Komen hasn’t really done all that much toward finding a cure for breast cancer, the question becomes, if not Komen, then who? My blog friend at I’ll Drink to That raised an important question in a comment to this blog post when she asked, “Who should my money go to? I don’t want it to go to pink socks for football players, or stupid tshirts or pink nail polish – I want it to make a difference.”

Who should my money go to? Excellent question. The short answer, IMHO, is anyone but Komen.

And here, ladies and gentlemen, are some ideas.

Research-based charities: You’ve got the heavy-hitters, like  MD Anderson, right here in my fair city. There’s also The Dana Farber Cancer Institute in Boston, and Memorial Sloan-Kettering Cancer Center in New York City. Those 3 links take you to each org’s donations page.

Beyond the hospitals, there’s the Dr Susan Love Research Foundation. This is one of my faves, and I’ve blogged about it here and again here, because the focus is on the research that will stop breast cancer before it starts. What a dream come true! Breast Cancer Action is a fantastic organization founded by BC survivors whose goal is to “inspire and compel the changes necessary to end the breast cancer epidemic.” The Breast Cancer Research Foundation was founded by an executive from the Estee Lauder company, and the foundation funds nearly 200 scientists working on the breast cancer puzzle. The National Breast Cancer Coalition has declared January 1, 2020 as its deadline for ending breast cancer forever. I’d like to see that goal realized.

Local breast cancer charities: Google “breast cancer charity” and your city. You should get several hits that aren’t Komen-related. My favorite in my city is The Rose. Here, insured women and women who can pay for services help offset the costs for women who are uninsured or who cannot pay. It’s been estimated that women with insurance have breast tumors diagnosed when the tumors are about the size of a raspberry. Women without insurance are diagnosed with tumors the size of a tangerine.

Site-specific breast cancer charities: One of the most intriguing is My Hope Chest, which offers financial assistance to women for reconstruction-related expenses. Even with insurance, reconstruction is expensive. Metavivor focuses on research for metastatic breast cancer, or BC that has spread. Look Good Feel Better uses the idea that if cancer patients look more like themselves–and less like cancer patients–during treatment, their self-esteem will increase ans so will their ability to cope.

There are ways to help beyond spending money, too. If you are considering buying a pinked-out product that claims to help fight breast cancer, read the fine print to see which charity is receiving proceeds. If it’s a charity that isn’t actively working toward research, perhaps you can select another product or skip it altogether. Volunteer at your local hospital or breast screening center. Speak up: if the preponderance of pinked-out product placement bugs you, say so. Tell your grocery store manager that you don’t like it. If you come across campaigns that seem more about the boobs than about the disease, contact the purveyor and say so. Spread some cheer to someone on the cancer “journey” by reaching out to them, regardless of how well you know them. A text, email, or greeting card saying “I’m thinking about you and I support you” is a small effort with big impact. Join Dr Susan Love’s Army of Women in which women–with and without breast cancer–of all ages and ethnicities can participate in a variety of studies & surveys.

And this concludes our lesson on if not Komen, then who? Class dismissed.

Couture for the Cause, redux

Posted: April 3, 2012 | Author: | Filed under: breast cancer | Tags: , , , , , , , | 15 Comments

I was trying to download some photos from the professional photographer’s website for the Couture for the Cause this past Saturday night. They have some beautiful pics of the event, and a handy “Post to WordPress” feature, but when I tried that feature, it posted the pic without allowing me to add any text.

So I will use the non-professional photos, taken by one John Burrmann, which IMHO are plenty good. See for yourself. He focused more on the people than on the venue, so I will paint a picture in your mind of the stately grounds and lovely estate that housed our fashion show and fundraiser for the American Cancer Society. The house is nestled onto a huge lot that slopes gracefully to a private lake. The runway was constructed on the lawn, with chairs around the perimeter and small round tables sprinkled around to allow for casual viewing of the big show. 

The show is a big deal. Last year the event raised some $94,000 for the ACS, and I hope this year exceeds that amount. Having cancer survivors model the fashions is a brilliant idea, both because it encourages the audience to dig deep into their pockets, and because it gives us survivors a chance to celebrate life. What’s more important than that after we’ve faced a terrible disease, difficult surgeries, ongoing treatments, and uncertain futures? Nothing. Not one thing.
There were several breast cancer survivors modeling again this year, and we talked amongst ourselves about how many years out we are. There was also a 20-year-old leukemia survivor who’s been in remission for 15 years. One model had brain cancer and is facing another reconstructive surgery next week. While all of the survivors who participated have a different story, we also have a commonality, and it was nice to unite in that commonality for one night and celebrate life.

The amount of volunteer hours and professional time that go into the gig are staggering, and the result is a first-rate production. I’ve been looking forward to this for weeks, and being an experienced survivor model I was ready to do my thing. I had the ultimate fun of having two of my dearest friends model with  me. Amy and Christy both rallied at my side when the Big C wrecked up my life, and it was such a fun thing to have them by my side for the big event. Unfortunately, the excitement was clouded by sadness from the unexpected death of our sweet dog Harry.  Because he died late Thursday night, I made the executive decision to not tell my kids until after school on Friday. It didn’t seem right to tell them Friday morning and send them off to school; I wanted them to have the luxury of grieving in private. I fretted all day Friday about how to tell them. I should have consulted my intrepid breast surgeon, Dr Dempsey, who has honed the skill of delivering bad news to an art form. I’m sure she would have had just the right words. As it turned out, I delivered the news then had to rush off to rehearsal for the show. My head wasn’t quite in the game for rehearsal, and I struggled with the finer points of the runway choreography. The “one and a half” and the “down and back” refer to the way we walk on the runway all decked out in our finery, and while it’s not hard, it took some brainpower to master.

Lenny and Tamra are the dynamic duo who take these fashion shows from cute clothes and accessories to a full-blown production. They pick the clothes for each of the 22 models, add accessories from jewelry to hats to feathered headpieces, design the sets and lighting and choose the music, then orchestrate all these pieces to cohere into the sum total of an amazing show.

We were instructed to show up at 6:00 sharp for our 8:45 pm showtime. Hair & makeup were time-consuming but fun. The show’s theme of the Roaring Twenties was reflected in the intricate hairstyles that featured soft waves and lots of pin curls. Makeup was subdued but included false eyelashes and red-red-red lipstick for each female model. As we went from chair to chair in the war room of hair & makeup, we felt like celebs preparing for a red carpet debut.

check out those eyelashes!

After the work was complete in the war room, we hustled to the dressing tent behind the runway. Talk about a chaotic scene. Each model is assigned an assistant called a dresser. The dresser’s job is to help us into our clothes, put on our jewelry and shoes, and make sure we are ready to leave the tent and present ourselves backstage for final inspection by Tamra. No detail escapes her sharp eye, and she is ready with a safety pin to bind a gap, a hairpin to tame an errant mane, and a keen sense of how a headpiece should lay or a scarf should be tied.

There’s not a lot of time to get dressed, and even with our dressers helping, it’s a crazy, crazy scene. In fact, as soon as we left the runway in one outfit, we were instructed to start taking off as much as we could while hustling back to the tent. Getting dressed was even crazier this year because two of my outfits were very light-colored — one white with a black skirt, one ecru with an orange ruffle — so trying to pull them on quickly while not smearing makeup on them was no small feat. My intricate flapper-style hairdo complicated the speed-dressing process, too, as there were 100 bobby pins holding my hair up that needed to be delicately avoided. There’s nothing delicate about a tent full of women and their dressers in the middle of a fashion show. The production assistants were yelling out our names to let us know we were due backstage, and a few male assistants were in the tents, too, making sure we staying on task and on time. There’s no place for modesty in the tent.

The first scene featured black & white fashions and was kicked off by the professional models. These girls know what they’re doing, and they know how to get the show started. This lucky guy got to strut his stuff with one of the pros, Mariah. She and I chatted in the war room and she’s as nice as she is beautiful.

The professional models may have had all the right moves and the picture-perfect looks, but we had the best cheering section. A sampling of our supporters:

The applause was thunderous, and there was more than one instance of hootin’ and hollerin’ when we took the stage. I only wish I’d channeled some of Mariah’s grace and stage presence when I hit the runway in my black & white outfit.

This isn’t something I ever would have picked for myself, but that’s part of the fun of the fashion show. The skirt was rather short, and the fishnet hose were a bit out there, but it was fun, fun, fun!

Christy’s black & white outfit was a romper, which Dr Dempsey referred to as a onesie. Some fishnets and a beret completed the look.

Amy’s outfit for this scene was so cute, and she rocked it.

The true-blue friend who brushed my teeth in the hospital and mediated more than one altercation with a white-coated professional was utterly transformed into a hot-hot-hot model!

Not only did I have some of my best girls modeling with me, I also had Dr Dempsey struttin her stuff. She did an outstanding job puttin’ on the ritz, and while I enjoyed every minute of modeling with her, I hope she doesn’t quit her day job! (She’s the blond, on the right.)

The blond in the beige dress is my favorite breast surgeon!

She told me she had an alter ego on the runway, and now I know that to be true. Being together for this event also gave her the chance to fuss at me for not coming to see her for my post-mastectomy follow-up. I’m a bit behind on that, but I’m happy to report that I went yesterday.

Scene 2 was tangerine-themed, and my one-shouldered dress was super fun (but a little too blousy). The ecru color with the tangerine ruffle was cute, but I’m not posting a pic because it’s not very flattering. It’s my blog, and I can withhold photos if I want to.

Instead of showing a not-so-great pic of me, I’ll show you the pros doing their thing:

The one bad thing about being involved in the fashion show is not getting to see everyone on stage. While these girls were modeling these cute dresses, I was frantically getting out of outfit #1 and into outfit #2.

I was able to watch this husband-wife combo strutting their stuff, and I would have loved to have seen more. They were having a ball and the crowd loved them. 

This lovely lady is a longtime survivor who gives newbies like me a lot of hope. She also rocked the runway in her high heels.

Our third scene was print dresses, and they were so so so cute. Amy looked like a million bucks in hers.

Christy and I got to walk together for this scene, and we both love our dresses. We had to try hard not to giggle and talk while cruising the catwalk.

The pros glammed it up in long dresses in gorgeous colors.

The show was almost over at this point, and we didn’t have to change into another outfit but just get ready for the big finale.

All the models circled the runway in a triumphant finish. Our faces hurt from smiling, our feet ached from struttin in heels, but our hearts were full of pride and happiness.

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.

Happy birthday?

Posted: January 25, 2012 | Author: | Filed under: breast cancer | Tags: , , , , , , | 5 Comments

Macy and I were watching Animal Planet (aren’t we always??) when this commercial came on. There’s a series of them, created by the American Cancer Society through the More Birthdays campaign. I like this campaign. I give it two thumbs up. The list of musicians who have participated is long — from Aaron Neville to Weezer, with plenty of variety in between. Even my personal fave, Jack Johnson, got involved.

According to the ACS:

“We believe every birthday you celebrate is a victory. Another year that cancer has not prevailed. Your birthday means everything to us. That’s why we’re dedicated to creating a world with less cancer and more birthdays. Thanks in part to our work, 11 million cancer survivors will celebrate another birthday this year. But we can’t stop there. With your help, we can create a world with even more celebrations, more laughter, and more birthdays for all.”

morebirthdays.com

Macy was puzzled by the campaign, which surprised me. Cancer has been a part of her life for most of her life — my mom was sick during Macy’s preschool years, then we had several “normal” years before I was diagnosed. Kids whose parents have cancer grow up fast — they face the ugly realities of illness, fear, uncertainty, hospitalizations, treatments, doctors’ appointments, and death.

My girl didn’t quite get the point of the campaign for more birthdays. I would have guessed just the opposite — that because she’d witnessed my cancer “journey” firsthand, she’d understand exactly what the ad meant. I guess it’s a good thing that my kid doesn’t associate my cancer with death and, by extension, with no more birthdays. It’s a slippery slope when dealing with young kiddos and disease. On one hand, I’ve tried to be open and honest about my “journey” with my kids, but on the other hand, I sure don’t want to plant the seed that makes them realize that, hey, wait — people die from this, so Mom could too.

What’s the right answer to the “how much is too much info” question? I haven’t the faintest idea. There’s so much about the cancer “journey” that lacks a definite answer. Come to think of it, there’s so much in parenting that lacks a definite answer. I’m sure there are a million and one books on amazon.com about the best way to talk to kids about cancer. I was way too busy upon diagnosis, though, to order any, much less read them. Having cancer is a full-time job, as is raising young kids. So I never found the right answer, and decided to just wing it. So far so good, as evidenced by the fact that my favorite girl doesn’t understand the campaign for more birthdays.

 

Now that’s some bank!

Posted: December 15, 2010 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , , , , | 2 Comments

The photo isn’t great, for which I apologize, but hopefully it’s good enough for you to see the amount payable to the American Cancer Society: a whopping $93,545.00

Yowza. That’s quite a check. It’s from the Couture for the Cause, which you loyal readers will remember was the premier Fort Bend event at the end of September in which funds were raised for the fight against cancer, and in which yours truly participated in the fashion show.

You may recall the tremendous amount of trepidation I felt toward the event. If not, let me remind you: I really, really, really didn’t want to do it. I had only been out of the hospital a few weeks, and was not in runway shape, to say the least.

However, as with most things we force ourselves to do, in order to stretch our comfort zones or become a better person or whatever reason for the torture, it ended up being one of the absolute, bar-none, best-ever experiences of my entire life.

As much as I’d like to claim responsibility for that huge sum of money raised, the truth is that beyond the $100 ticket that Trevor bought to attend the event, I didn’t have a whole lot to do with it. But next year, I will. Because I will be hounding everyone I know to pony up, buy a ticket, and come to the event. I plan to do the fashion show again, and I expect you all to be there.

In reflecting back on how scared I was to do the show, and how uncomfortable I was in my outfits (but loved every inch of the shoes!), I’m grateful for a whole lot — for having the courage to do it even though I didn’t want to; for having parents who raised me to honor a commitment even though I didn’t want to; for being upright and out of the hospital, not attached to an IV or a wound vac; for the great and true friends who were there that night to cheer me on; and most importantly, for life and the ability to savor it.

Lenny, the director/producer of the event, sent an email the day after the shindig, to the volunteers and models. He wrote something pretty special, and I want to share it:

Please know what a personal and professional experience last evening was for Tamara, me and my fashion team. We love our work in the fashion industry. I am grateful that through the almost 60 – 70 events me and my team produce a year that we are able to help important causes raise awareness and more importantly dollars for worthwhile causes. But the true joy of our work is the people we meet and get to work with along the way. Tamara, me and my team spent all of last night after the show while packing things away recounting very special moments each of us experienced with each of you. We are grateful for those moments and they will mean much to us for a very long time. This event  honors and celebrates a special group of people who have experienced or are experiencing cancer. While there are many stories I will share one from last night. One of the models was very gun-shy about participating in this event. She came into the fitting at Tootsies tentative and not all certain about modeling in the show or that we would find anything flattering for her to wear. Her experience with cancer is fresh and current, recently having surgery. During the hair and make up prep period I started seeing how excited she was getting. She especially loved her hair. During the show I remember her beaming as I sent her to walk the plank. After the show she shared what an amazing and fun time she had by modeling in this show and said she would see us next year. And she will.

10 tips

Posted: October 16, 2010 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , | 2 Comments

So I’m getting groceries, minding my own business and trying to get on with my so-called normal life (as normal as life can be after breast cancer but before reconstruction), and I see a pamphlet titled “10 Tips for Getting a Mammogram.” This ought to be good.

Tip #1: “Yearly mammograms are recommended starting at age 40 and should be done every year for as long as a woman in in good health.” And if you’re not in good health? More often? Less often? That kind of construction bugs me.

Tip #5: “Try not to schedule a mammogram when your breasts are likely to be tender, as they may be just before or during your period. This will help lessen the discomfort.” Really? They think that’s going to help? I say try to schedule a mammogram after slamming 3 grande margaritas to help lessen the discomfort. But then I remember that I have neither breasts nor periods anymore, so I guess I can go straight to the margaritas.

Tip #8: “Only you and the technologist who positions your breasts will be present for the mammogram. Most technologists are women.” Most technologists are women? Now I’m really curious about the ones who are men. What percentage? Do women complain about having a male do their mammo? Is there a support group for male mammo techs? Are they cute?

Tip #9: “The entire procedure should take about 20 minutes. Your breasts will be compressed between 2 plastic plates. The compression may be painful, but should only last a few seconds.” I could make a smarty-pants comment about how long the pain of a mastectomy lasts but I’m not even going to go there. I will tell you it’s more than a few seconds.