Wigged Out!

Wigged Out – Tina’s Wig Boutique

My first question to my doctor after being told I had breast cancer at the age of 34 was, “Will I lose my hair?” … not “Will I lose my life?” Seems silly now after everything else I’ve faced on this journey. My husband, Scott, said “Really, you are willing to trade your life just to keep your hair?” No, I didn’t want to do that, but I didn’t want to look ridiculous either. I didn’t want people whispering, “Oh, that’s a wig!”

For many women, hair loss is a part of the fight. I found the wig shopping process to be horrible. Sitting in those wig chairs was the loneliest I’d ever felt. It suddenly hit me that I really had cancer. Couldn’t the wig shop employees see and feel my fear and desperation? I needed help. Where was the compassion?

I became really good with wigs during my journey. I had always been blonde, but cancer gave me the confidence to try new things. I marched into my last chemo session feeling sassy in a red wig and announced to the nurses that I’d decided hair was a waste of time and I would keep my hair short when it grew back and just wear wigs. They all stood looking at me like I was crazy. Was this the same emotional wreck that was so worked up about wearing a wig? Yup, same gal, but different attitude and new perspective.

I will be a six-year survivor this October and I still wear a wig every day. I never thought I could love wigs and I do! I really think they need a new name like “spare hair” or “easy hair.” For me, they’re an accessory. I change my bag, my shoes … and my hair! I love never having a bad hair day and the ability to change styles and colors. I realize that wearing a wig makes the fact that you are going through cancer real, and that some women who experience chemo-related hair loss may opt to not wear a wig; but if you choose to wear a wig, try to look at it as a chance to have an alter ego … Your butt-kicking-cancer ego!

Four years ago I started my own boutique, called Wigged Out because I want other women to have a better experience than I did. I want them to know I’ve been right where they are and to walk out feeling beautiful and confident. My goal is to empower other women to fight their cancer and win — while looking fabulous.

I thought I’d share some things I’ve learned along the way …

In retrospect, I handled the hair loss all wrong. It initially came out 10-15 strands at a time and it gradually got worse. But, once my hair was gone, I stopped crying about it. I put on my wig and felt pretty normal. So, my advice is don’t allow the hair loss to control you. Take control of it and you will feel more in charge and can say, “All right cancer, you messed with the wrong chick!”

Should you get human hair or synthetic? Everyone has a different opinion. Here are some things to consider:

Human hair:
•    Generally more expensive. Quality wigs in this category usually start around $800.
•    Requires daily styling (curling, flat iron, etc.), just like regular hair.
•    Can get split ends (from heated styling tools) that will need to be trimmed.
•    Needs to be washed with a mild shampoo and conditioner every 6-10 uses.
•    Tends to feel heavier and hotter.

Synthetic wig with a monofilament scalp

Synthetic Wigs:
•    Tend to be less expensive ($150-$400 for a nicer one).
•    Are available with a monofilament fiber that looks like a human scalp.
•    Need to be cleaned once a month with shampoo for synthetic hair, but daily you just need to shake it out and pop it on. Do not brush a synthetic wig, only use a wide-toothed comb and never comb it when it is wet.
•    Can be cut to fit your face. Make sure you go to someone with experience cutting synthetic hair. If it is cut wrong, it will stick out in an awkward way.
•    Are heat sensitive. You can’t open an oven, hot dishwasher, cook on a stove or expose it to any type of high heat or steam. If you decide to go with synthetic, it is best not to wear your wig in the kitchen.

 I hope this information is useful. If you need help, I’m happy to answer questions or offer support. Just visit my website www.imwiggedout.com and click on the “Talk to Tina” link.

I wish you well on this journey and please know you are not alone!

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Categories: Guest Bloggers

Car Back!

Participants in first 2012 TdP Metro NY Training Ride:
(from left to right: Jean McLoughlin, Kristin Westbrook, me, Matt Purdue, Ken Barrows, Peter Finder, Michael Dayton, Herb Dershowitz, Kim Jenkins, Mitchell Fink, Natasha Weischenberg, David Cura, Laurie Cohen, Pablo Colon)

Have you ever driven past a large group of cyclists and wondered about the chaos that must be involved in keeping so many people together while juggling traffic lights, moving cars and hills … all while staying together? I have.

Before this spring my thought would have been: “Why spend your precious Sunday being cooked by the sun while your life rests in the balance of two skinny tires?”

However, I have made a commitment to myself to take my body back from cancer by riding 200 miles on a bike, and so I’ve begun my own dance with these skinny tires. Since I have no prior cycling experience (translation: have no control and could easily fall over into city traffic at any moment) my husband and I have been riding in upstate New York surrounded by fields, cows and an occasional woodchuck.

While these first rides have been filled with strenuous hills, the greatest concern is a sunburn — or being hit in the face by a bee. The road is quiet, so you feel one with the bike, the road and the surrounding farmland.

This picturesque experience came to a screeching halt moments (literally) after the start of my first group Tour de Pink training ride. As we came to a busy intersection, I realized I had not stopped at a traffic light yet. I certainly had never ridden in a group of 15 cyclists. There were cars everywhere, bikes everywhere and funny terms being yelled out all around me. If they say life is lived outside your comfort zone — I was more alive during this group ride than I had been in years.

Our group of cyclists moved as one creature, always warning its parts about threats around it. As we rode you would hear “car back!” come from the back and move up past you, each person yelling it out so the next person in front of them could do the same, so that we all knew a car was behind us. Moments later “runner front!” would move backwards through the group the same way.

“Hole!”

“Gravel!”

“Slowing!”

The shouts became a song moving back and forth between the entire group that I had begun to rely on. Everyone around us was taking care of each other. Everyone was part of the whole, no matter where they were in the line.

The amazing cyclists that rode on this group ride with me are angels in my eyes. They took great care of us newbies who were only two years out from diagnosis. They rode slowly beside us, teaching us and creating a space where we felt comfortable.

This is what Tour de Pink is all about. Talented cyclists giving their time and energy to help young women affected by breast cancer, like me, do something they never thought was possible.

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Categories: Taking my Body Back

Do I Really Need To Fall?

So, I have a couple rides under my belt — but that’s nothing to get cocky about. What I don’t have under my belt is my first fall.

I’m still struggling with how to shift gears without making that awful noise that tells every cyclist in a 10-mile radius that you have no idea what you are doing. The last thing I want to worry about is falling! And each time I ride and I don’t fall, the anxiety rises one notch higher.

A few weeks ago, my husband and I were riding up in the Hudson Valley in Columbia County. As we were coming into the final third of the ride, we noticed a foal (baby horse)!

It was so close and so cute … I’ve never seen a foal in real life. We turned around and I decided I wanted a photo … and guess who forgot she was clipped in?

I was so excited about the foal it didn’t even cross my mind that I was attached to my bike … that is, until I was lying on the ground squirming around like a bug on its back!

My first fall!!! Thank God! It wasn’t so bad — although being clipped in while you are laying on the ground is a tad awkward.

As I wrestled with trying to unclip, one of the large horses came to get a better look at me squirming around. The horse must have been curious about my ridiculous bike outfit and wondered why I was lying on the ground with a bike attached to my feet!

I’m sure the horse got a good laugh.

I have been told over and over that “everyone falls” and part of me thought that I would be the one that didn’t. Ha! I don’t think I’ll ever forget my first fall … and I’m happy to know now that it isn’t that bad. It was the horse’s fault!


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Categories: Taking my Body Back

My Very Own Bike!

Rachel Keenan and me with our new Liv/giant Avail Inspire bicycles

Do you ever think about those days when you knew your life changed forever?

I’ve had a lot of them since being diagnosed with breast cancer at age 36. However, they were completely different from the day I received my first road bike, a 2012 Liv/giant Avail Inspire designed by young breast cancer survivor and Tour de Pink rider Emily Gresh.

Why did I get a free bike? Liv/giant gives a free bike to many of the young breast cancer survivors who sign up to take their bodies back from cancer by participating in a Tour de Pink three-day ride.

Liv/giant started this practice back in 2008. There was no agenda. The company wasn’t given anything in return. Liv/giant just believes in helping young women with breast cancer take their bodies back from cancer and is committed to the cause.

Being given a bike might not sound like a big deal to everyone, but for a breast cancer survivor whose body has been affected by treatment and surgery, and who hasn’t ridden a bike since she was 12, this is a very big deal.

Susan B Anthony Bike QuoteThere is something magical about being given a bike. It’s as if someone else really gets what a big deal Tour de Pink is and wants to make it easier for you. When do we ever see that type of corporate compassion anymore? Hardly ever.

And there is something very special about Tour de Pink. The three days and 200 miles are grueling and meant to be that way so you train hard, put your body through a trying task … and emerge victorious.

My belief is that it is a way for me to truly get my body back: I have to ride 200 miles … on a bike with skinny wheels. God help me.

At least she (the bike) is beautiful, and I will ride my Liv/giant Avail Inspire bike with pride.

 

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Categories: Taking my Body Back

The Supreme Court’s Ruling on the Affordable Care Act (ACA)

Today, June 28, I’m attending the Intercultural Cancer Council’s (ICC) Biennial Symposium on Minorities, the Medically Underserved & Health Equity. This meeting is full of professionals focused on serving indigenous, poor and various racial and ethnic groups that face health disparities, and thousands of young women diagnosed with breast cancer fall into this category

As I was sitting in a general session this morning along with 700 professionals and students all discussing health equity across this great country – the Supreme Court announced that it upheld the Affordable Care Act (ACA), often referred to as Obamacare.

The spread of information started with the session’s moderator reading CNN’s statement that the personal mandate had been struck down. The impact of this news was felt throughout the room and could only be summarized as a sense of disappointment. The moderator proceeded to ask a panelist to reply to the news. As that reply concluded, someone in the audience interrupted by reading that CNN just corrected its initial report and read (from her phone of course) that the legislation was indeed upheld by the Supreme Court. Even more interesting, the moderator used the opportunity to shift the conversation and engage new responses from the panelists. The room filled with energy and excitement immediately. As panelists began to reply, professionally and informatively, one of the meeting’s founders (I think it was Lovell Jones, PhD), abruptly came to the microphone to inform the moderator that the feeling in the room is that “the people” need a pause to acknowledge this moment in history – and the applause was so overwhelming that it almost brought me to tears.

Let’s agree that health care in this country is extremely complex and no solution will ever be perfect (or inexpensive). There was a very interesting dissent to the ruling that expressed concern about how this will delay a truly equitable and applicable national health care system for all citizens. And, I’m sure there are many other opposing positions. I haven’t yet read the actual ruling, but the impact of upholding the Affordable Care Act for young women with breast cancer means that as of 2014, no group health plan or new individual plan will be able to exclude them or charge them a higher premium because they have had breast cancer. It also means that starting in 2014, all annual benefit limits will be eliminated. There will no longer be a lifetime cap on the dollar amount of services that a person can receive in their lifetime.

Will this ruling help YSC as it strives to reach and better serve all young women affected by breast cancer? I don’t yet know. But I do agree with one sentiment that was shared today, “If we don’t take care of those who are most vulnerable, we jeopardize the health of everyone.”

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Categories: Guest Bloggers

Getting Your Groove Back: Inviting Intimacy and Sex Back into Your Life

Jean presents her “Getting Your Groove Back: Re-Establishing Intimacy after Cancer©” poster at the May 2012 AOSW conference.

Returning to a “normal” sex life following treatment for breast cancer is a topic that isn’t often addressed in conversation between health care providers and young survivors of breast cancer. One common side effect of treatment is that a pre-menopausal woman’s cycle stops. Not only are many survivors experiencing menopause 15 to 20 years earlier in life, their libido is practically non-existent. While individuals are told that they will be put into menopause, many survivors report that no one explains what that means. Menopause brings hot flashes, vaginal dryness and sexual spontaneity goes missing in action. Feelings of bewilderment and frustration are quietly tolerated and unquestioned because the cancer is being treated. Managing those side effects with compassion and love is a priority in keeping intimacy alive, even if it is a different kind of intimacy.

As an oncology-certified social worker and licensed clinical social worker, I have had multiple conversations with young women surviving breast cancer on the topics of intimacy, sex and body image. Questions like, “When do I tell someone about cancer?” often arise. The answer is simple: when you’re ready. I am not suggesting this is a simple conversation and you have no obligation to tell potential partners about your cancer journey until and unless you’re ready. Now, young survivors giggle when they hear me add this caveat: If your clothes are coming off, you might want to stop and have that conversation.

YSC conducted a recent survey of young breast cancer survivors. 51% of respondents stated they wanted information regarding sexuality and intimacy while 37% of respondents desired more support in managing personal relationships.

While I was working as an oncology social worker at Emory University Hospital, the topics of intimacy, sex, body image and the like led to my establishing a six-week workshop in 2010 called, “Getting Your Groove Back: Re-Establishing Intimacy after Cancer©”. After joining YSC’s staff in April 2011, we launched a pilot group. A second group met this spring and another is scheduled to begin later in the summer. I would have to say that one of the biggest successes of the workshop so far has been watching a shift of thinking from “I have a broken vagina,” to “I have a different vagina.”

The workshop goals include returning to the dating world, establishing intimate relationships or reclaiming yourself after a breast cancer diagnosis. Getting Your Groove Back (GYGB) uses journaling techniques to cultivate an action plan for self-care. This program invites healing and creating new paths for re-establishing intimacy after cancer. Group activities include writing exercises pertaining to attitudes and belief systems around body image, intimacy, hopes and desires; establishing short and long-term goals in order to increase overall life satisfaction; and engaging in group discussion. Writing exercises include: listing thoughts on love, sex and intimacy; date-night-for-one ideas; and a one-to-one dialogue with your body.

I had the privilege of presenting a poster about the workshop at the May 2012 Association of Oncology Social Workers (AOSW) national conference, which resulted in confirmation that these themes are universal and come up often. Every oncology social worker who dropped by the poster commented that they listen to survivors all around the country express concerns about the lack of this kind of information and the desire for the opportunity to obtain it and discuss their feelings.

If you are a young women surviving breast cancer, ask questions. If your oncology team is not the “go-to” resource for the answers, advocate for yourself! Ask to speak to a social worker if one is available. Seek help from certified sex therapists. Ask your OB/GYN or PCP. Or … email me.

In the meantime, play around with one of these journal techniques and see what surfaces:

How Do I Love Me?  Let Me Count the Ways…Make a list of 10 things you love about yourself and then give yourself a little feedback after the list is complete. Notice how you feel. Did anything surprise you?

One Fun Thing I Want to Do This Summer is____________. Fill in that blank, write about it for 5 minutes. Read over what you wrote. Is there a chance you can do it? What is one step toward that One Fun Thing?

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Categories: Guest Bloggers

The 4th Annual Congressional Women’s Softball Game

The 4th Annual Congressional Women’s Softball Teams

I was overwhelmed with pride last Wednesday as I watched women from Congress and the Washington Press Corps face off to raise funds and awareness for young women affected by breast cancer in the fourth annual Congressional Women’s Softball Game in Washington, D.C.

The Congressional Women’s Softball Game was founded in 2009 by Rep. Jo Ann Emerson (R-MO), Sen. Kirsten Gillibrand (D-NY) and Rep. Debbie Wasserman Schultz (D-FL), a young breast cancer survivor herself. Now in its fourth year, the game continues to emphasize the player’s bi-partisan commitment to women’s health and fighting breast cancer.

In a time when many of us around the country are having a hard time understanding what is going on in Congress, I felt proud to see female elected leaders from both sides of the aisle come together to play side-by-side to generate public awareness that young women can and do get breast cancer, as well as critical funds to help YSC address the unique needs facing young women diagnosed with this disease.

Brianna Keilar (CNN) and I talked at the after party about how there is no other event like this in our entire country where Democrats and Republicans truly unite for a cause. House Speaker John Boehner and House Democratic Leader Nancy Pelosi were in attendance, along with other notables such as Labor Secretary Hilda Solis, Senator Lindsey Graham, House Majority Leader Eric Cantor, House Minority Whip Steny Hoyer, and Representative Dennis Kucinich, who was also there to support his daughter, Jackie Kucinich, a reporter at USA Today and member of the Press Corps team. Everywhere you looked you spotted familiar faces that you are used to seeing on TV while you make dinner.

I was also in awe of the press “Bad News Babes” team. These are women we see covering the nation’s news day after day. It was invigorating to hang out with them and hear that they are interested in helping to spread the word that young women can and do get breast cancer. Having NBC’s Andrea Mitchell MC the game after her own battle with breast cancer last year made her presence even more powerful this year as she delivered the play-by-play calls throughout the evening.

The Capitol Police, snipers, bomb-sniffing dogs, and large black SUV’s created a certain buzz in the air, but seeing Debbie Wasserman Schultz hanging out with her beautiful daughter in the dugout cheering on her Republican teammates moments later reminded me that she’s also a wife, mother … and a woman whose life has also been affected by breast cancer.

Days like last Wednesday make me feel proud to be an American and a part of YSC.

Huge thanks to McDonald’s for serving as Lead Sponsor of the game!

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No Way Am I Wearing Those!

Terry Black Flare Skort Padded

Riding a bike from Philadelphia to Washington, D.C., or from Thousand Oaks to Foothill Ranch in Southern California? How hard can it be?

I registered for both YSC Tour de Pink three-day East and West Coast rides without owning a bike or any of the bike gear that cyclists so proudly wear, such as those funny, clicky shoes or those ridiculous helmets. The first piece of cycling gear I purchased was …. (drum roll, please) … riding shorts.

As a grown woman flirting with a new sport, I think you have the opportunity to pick and choose what you like about the fashion that sport has to offer … and I don’t like bike shorts. Plain and simple.

After I hit the 10-mile mark on the stationary bike at the gym, I understood the reason for the padded seat … but why do women have to wear such unflattering shorts?
I asked other women what they wear and was directed to a bunch of fun websites that understand my frustration with the sport’s fashion. I was thrilled when I found “skort” bike shorts. The huge bike pad is in the shorts, but the shorts are covered with an a-line skirt. How cool is that?

I’m high maintenance, I admit it … but at least I’ll feel less self-conscious than I would wearing traditional bike shorts!

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Categories: Taking my Body Back

An Advocate’s Testimony

YSC Co-founder Joy Simha testifies before the Senate Appropriations Subcommittee on Defense in support of funding for the FY 2013 DOD BCRP on June 6, 2012.

In 1994, I was a happy-go-lucky, single, 26-year-old focused on my career and family. Breast cancer and advocacy weren’t anywhere on my radar. All that changed when I found a lump under my right nipple and was subsequently diagnosed with breast cancer. Suddenly, I was focused on medical treatments and finding my new normal as a very young cancer survivor.

Discouraged by the lack of resources available and concerned about the underrepresentation of young women in breast cancer research, I came together with two other young breast cancer survivors in 1998 and co-founded Young Survival Coalition (YSC). YSC was the first nonprofit organization to focus exclusively on the unique needs of young women diagnosed with breast cancer, and it began as a grassroots advocacy movement to increase the quality and quantity of life for young women diagnosed with breast cancer.

YSC realized that if we were really going to accomplish our mission, we needed to partner with other organizations. We have been working with the National Breast Cancer Coalition (NBCC) since our inception. NBCC’s mission is to end breast cancer by January 1, 2020, through education, advocacy and action. YSC is a board member organization of NBCC.

On June 6 18 years after being diagnosed and almost 15 years after co-founding YSC, I testified before the Senate Appropriations Defense Subcommittee in Washington, D.C. It was not my first time. But, someone asked me about the experience and how I felt. It got me thinking. The first time I testified, I was overwhelmed with the idea of asking members of the U.S. Senate to make breast cancer research funding a priority. Then I stopped to think about all the amazing young women and men that we lose to this awful disease, including a very long list of friends: Randi Rosenberg (diagnosed at 32) who passed away at the age of 44 in 2010, Lisa Muccilo (diagnosed at 27) lost her battle at the age of 33 in 2003, and Mary Knipp (diagnosed at 35) who died at 43 in 2006.

All of these ladies lived past their five-year survival marks, and they enriched and inspired my life. They all lobbied for the Department of Defense (DOD) Breast Cancer Research Program (BCRP), so I felt like it was a gift to testify for the program. I also thought of all the knowledgeable advocates who do this very difficult work because we need to better understand how to end breast cancer. Knowing that I am standing before senators representing all of them and so many families affected by this disease, I feel inspired and driven to bring the group’s perspective to this influential subcommittee. This is not my story alone.

So, how does one make a case for a line item in the appropriations budget to help fund high-impact, innovative, collaborative and high-risk research? The proof is in the pudding. The DOD BCRP has worked since 1992. Targeted therapies, like Herceptin, have been developed as a direct result of this program. Biomedical research is being transformed. Innovation and dedication can be seen in the applications and at the decision-making table. To end this disease, we need to continue investing in this effort.

At the DOD BCRP, informed advocates of all levels sit at the table. As one of those advocates, I can tell you we ask for the money and ensure the program only funds critical research that will impact our lives. For eight years, I’ve watched how well that decision process works. It’s easy to speak up for something that you know produces results. Since I am a NBCC Project LEAD® graduate and attend the yearly Advocate Summit, those who run the program know I am educated and qualified to serve effectively.

So, when asked whether I’m nervous about testifying in front of the Senate, the simple answer is no. I don’t have the time nor the luxury to be nervous. This year nearly 290,000 women and men will be diagnosed with breast cancer, and we continue to lose about 40,000 annually to this disease. They, along with our future generations, need the DOD’s peer-reviewed BCRP.

The women who were in surgery, chemotherapy or undergoing other treatments when I testified on June 6 had a much tougher task that day than I did. The families who were helping their loved ones in a hospice know what a difficult task is. I just needed to stand before the committee to represent all of them and emphasize the need to continue the innovative, high-risk, high-reward, collaborative work done by the BCRP in its mission to eradicate breast cancer.

I feel honored to have had the opportunity to represent all of the individuals whose lives are affected by this disease.

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Categories: Guest Bloggers

T-DM1: What We Know

The American Society of Clinical Oncology (ASCO) ASCO Logomeeting is always an interesting and informative event. Researchers travel from around the globe to hear and share research results in all areas of oncology. Every year the media reports “breaking news,” which can make it sound as though a cure for cancer is near or a new drug will be in your clinic tomorrow. Careful review, however, is needed to determine whether the media reports are accurate.  This year’s breast cancer “breaking news” was in regard to trastuzumab emtansine (T-DM1), a Phase III trial called EMILIA, in people with HER2-positive metastatic breast cancer (mBC) — specifically those who had previously received treatment with Herceptin® and a taxane chemotherapy. This study was sponsored by Genentech, the developer of T-DM1.

At ASCO, the EMILIA data presented showed an additional 3.2 months of progression-free survival (PFS) and a potentially encouraging trend towards overall survival (OS) when compared with the control arm. Toxicities were also fewer in the group who received T-DM1. This data was interim (not final), as the EMILIA study is still ongoing. The interim analysis shows some promising data, but the study still needs to be completed and all data finalized and analyzed fully. T-DM1 will also need to go through the drug approval process before it can be offered in clinical practice outside of clinical trials.  The abstract of this presentation is available for you to read, and you may also want to read the following blog written by Laura Nikolaides of the National Breast Cancer Coaliton (NBCC) which dives into the science and presents the T-DM1 information in an easy-to-understand way.

So what does this all mean to our population? It means ask questions, seek information and understanding, and use your resources! We encourage you to learn more! Two of YSC’s partner organizations will be hosting teleconferences, Living Beyond Breast Cancer and CancerCare. Listen-in,  ask questions and never be afraid to read the actual research. If you would like to learn more about the science of breast cancer and how to decode research results and media reports, NBCC, offers a science training course called Project LEAD.

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