Cancer: A Risk, A Surprise, And Certainly An Adventure

Ronda Walker Weaver, LBBC‘s newest blog contributor and soon to be regular contributor, shares her story about her diagnosis and how it made her step outside of her comfort zone and learn to accept the new changes in her life.

I am 54; I teach writing at our local university and I work for an education company in my spare time. I am the proud grandmother of 16 grandchildren! I found a lump in my breast on Thursday Aug. 30, 2012, and by the following Wednesday I had a diagnosis of cancer and surgery the following Wednesday – Stage 1 Grade 3 Invasive Ductile Carcinoma, Triple Negative. Twelve days from finding to removing (nothing in the nodes or surrounding tissue). I was told I’d need 8 biweekly chemotherapy treatments and then 35 radiation treatments. No one in my family has had cancer; cancer has never ever been in my vocabulary.  I knew I could not go on this journey alone, and so I invited friends and family to join me. I figured the prayers and positive thoughts would be enough to bear me up. I learned my life was out of my control, and I had to live moment by moment, not only trusting others, but actually needing others to care for me. No plans – just prayers.

I’m not one to run away – I am not one to live in fear – I will walk away from anger, hurt, betrayal, poison, but I prefer negotiating, talking things through, working things out, coming to some sort of compromise. I believe in education, intuition, and inspiration.

Yet I’m not really a risk-taker, unless a risk is defined as driving down a road without a map, or pushing myself at the gym. I won’t put my physical self in any place that might be risky – I don’t like heights, I’m not a great swimmer, I’m probably not going to sky dive anytime soon. I like intellectual risks though – what a rush it is to learn, to discover, and to know I can learn – bring it on!

I prefer “looking forward to,” over “surprise.” I love adventure, but I want to know a little about what I am embarking on. Over our back door we have the phrase, “Go out for adventure, come home for love.”  I like planning, that’s part of the adventure, part of the journey – it’s like receiving a gift card for Christmas, and then using it, 2 gifts for the price of 1!

And here stands cancer.  A risk, a surprise, and certainly an adventure. However – fear, get thee away. I will learn what I can, listen to my own body, and pray for inspiration – it is already arriving.

What I’m learning:

1. Acknowledge it – Breast Cancer

2. Don’t blame – it’s not heredity, not second hand smoke, not diet. It just is. Why me? Why not me.

3. Listen to myself – I was told “something” was coming my way, here it is.

4. Time – a dear friend of mine taught me, “Give it time, the answer will manifest itself.” Reminds me of the tune, “You Can’t Hurry Love.” Time is of the essence, but all I have is time.

5. Get out of my comfort zone – My comfort zone is this, do, do, do, busy, help, seek, find, do, do, do. Now I will learn to be still – again.

Rhonda is 54 years old, she eats right, exercises daily, and there is no history of cancer in her family, yet she was diagnosed with breast cancer on Thursday, Sept. 6, 2012. She teaches folklore and writing at Utah Valley University and works for an online education company, LearningU. She loves reading, listening to music, gardening, walking and riding her bike, traveling, and spending time with her grandchildren, children, and her dear husband – who has been her pillar of strength through her journey. She also writes her own blog called Folklady’s Adventures.

Give LBBC Your Feedback About Peggy Orenstein’s New York Times Article, “Our Feel-Good War on Cancer”

By Jean A. Sachs, MSS, MLSP, Living Beyond Breast Cancer’s chief executive officer 

Journalist Peggy Orenstein ignited a debate when she explored the limits of mammography screening and the dangers of overtreatment for breast cancer in her New York Times Magazine article, “Our Feel-Good War on Cancer” (April 25, 2013).

For many in the breast cancer community, Ms. Orenstein’s observations come as no surprise. We know survival rates for women with metastatic disease have not changed, despite the widespread adoption of breast cancer screening. That women with ductal carcinoma in situ, or DCIS, often receive the same treatments as those with invasive disease—along with the related side effects and emotional distress. That more and more women choose prophylactic mastectomy after a diagnosis of DCIS or early-stage disease. And that our sisters with stage IV breast cancer remain silenced, isolated and underserved.

Still, the article introduced thousands of people to the realities of breast cancer today. As we talked about it at the LBBC office, we had many questions. How did this piece impact you and your loved ones? We want to know:

• What is your perspective?
• What questions does this article prompt for you?
• What are your concerns for your health or well-being, based on what you learned?
• Which issues deserve more discussion?

Based on your feedback, Living Beyond Breast Cancer will design a program to help further discussion. Please post your comments below, and our staff will review them.

How I Learned to Stop Worrying and Love Tamoxifen

Most of you already know Randi from her many contributions to the LBBC blog.  Today, Randi gives her take on tamoxifen, currently used for the treatment of both early and advanced ER+ (estrogen receptor positive) breast cancer in pre- and post-menopausal women. In December, 2012 The Lancet, one of the world’s leading general medical journals in Oncology, Neurology and Infectious Diseases published a report suggesting for women with ER-positive disease, continuing tamoxifen use to 10 years rather than stopping at 5 years produces a further reduction in recurrence and mortality, particularly after year 10¹. In her latest post, the first of a two-part series, Randi shares with LBBC readers her experience and thoughts on these latest findings.

I’m still not a full-fledged Tamoxi-Babe.

There.  I admit it.

But after reading lots of information released since The Lancet published a study showing the probability that tamoxifen treatment for 10 years instead of 5 decreases both the rates of mortality and chance of recurrence in women with breast cancer, I may find myself stuck as a passenger on Train Tamoxifen for a few more years.

Pass the happy pills (we’ll get to that in a minute).

I say “stuck” because I was hoping that train was coming to the station.  I was first given tamoxifen after I completed my treatment plan for breast cancer, which was ER-positive (lumpectomy, chemotherapy and radiation).  I honestly can’t recall the physical side-effects because this little thing called chemo-brain got the best of me (we’ll talk about that some other….what was I saying?) Anyway, after the first few months of tamoxifen treatment, the unexpected happened.

“Seriously?  Did you just say I have a mass growing on my left ovary, which is going to result in the need for me to have complicated surgery? Because believe me, that wasn’t in my cancer plan.”

Seriously.

My body betrays me again.  And then, a little voice in my head started asking if the tamoxifen could have been the reason for my gynecological “problem.” And before you say, “But Randi, studies indicate there’s maybe only a small chance of that happening,” I get it.  I really do, so thank you.  But, “small” ain’t “zero” and I already proved my ability to beat the odds by being diagnosed with breast cancer in my 40s so I know all about odds and how somebody needs to be in the “small” group in order for there to even be a “small” group and deal with the fact that it’s sometimes better to be a zero.

I digress.

As I recuperated from the big hysterectomy bag of a nightmare, my oncologist put me on an aromatase inhibitor, the results of which for me were some messed up side effects. Joint pain 24/7 bad enough to feel like I was going through chemo all over again. I couldn’t get out of bed without being in pain. I feared my days were numbered when I had difficulty just lifting my legs over my bed or unfolding my fingers one-by-one. I felt arthritic and old. Did I mention I was also cranky and belligerent? Like that crusty ancient neighbor we all had in the old neighborhood whose house we ran past because word on the street was she’d try to fatten you up with the gingerbread cookies she used as shingles on the roof of her house.  On the outside, I didn’t look a day over 40, but I felt like a 90 year-old on the inside.

After months of complaints and many aromatase inhibitors later, I came full circle back to tamoxifen. Ironic.  Even worse, it was Alanis Morissette irony better known as the “isn’t it ironic that the things I sing about in this song called “Ironic” aren’t actually ironic but really are just bad luck” kind of ironic. And that little voice was in my head again and it was asking if I was putting back inside of me the very thing that had got me to where I was in the second place. I wondered again if it caused me to lose my female reproductive parts. I even begged my oncologist to use me for a study regarding gynecological masses after taking tamoxifen.

“Not enough data.”

Again. Seriously?

I am the data!

And now The Lancet study, those aforementioned happy pills and a ticket to ride Train Tamoxifen.

I can tell you right now that I’m willing to bet my…

Wait. I was going to say eye teeth but on second thought I’m not voluntarily going to give up another piece of me. Let’s start again.

Randi’s story concludes next week with part two of The Seven Year Itch or How I Learned to Stop Worrying and Love Tamoxifen.

For January’s Ask the Expert , Living Beyond Breast Cancer’s monthly online Q&A forum, Adam Brufsky, MD, PhD, answered questions about ATLAS, a major new study that has shown that tamoxifen treatment for estrogen receptor-positive breast cancer is even more beneficial when taken for 10 years instead of five. These questions were submitted during our January 9, 2013 webinar on News From the San Antonio Breast Cancer Symposium.

¹Long-term effects of continuing adjuvant tamoxifen to 10 years versus stopping at 5 years after diagnosis of estrogen-receptor-positive breast cancer: ATLAS, a randomized trial.  Published online December 5, 2012 in the Lancet, First author:  Christina Davies, MBChB, University of Oxford, United Kingdom.

What, Me…Cancer??

On Tuesday we introduced first time contributor Sandi Dennis to the Living Beyond Breast Cancer Blog.  Sandi is a long time supporter of LBBC who grew up in Philly and attended Philadelphia High School for Girls (where she is looking forward to her 40th reunion in 2014!). She majored in journalism at Penn State and worked as a TV news reporter in Columbia, South Carolina, prior to attending University of South Carolina Law School. Today she practices FDA/healthcare law, and policy, including work for companies and nonprofits in oncology and patient advocacy.  She lives in Washington, DC, with her husband, daughter and a dog named Lulu. Here is part two of her story.

On that day of the LBBC Yoga on the Steps Fundraiser in DC,  my sneaky triple negative breast cancer in fact was not gone, only as yet undetected.  And that 95% chance of non-recurrence? Well, somebody has to be in that 5%.  So much for my faith in statistics.   In early November 2012, a trip to the dentist and a routine x-ray showed something odd. “You don’t have a history of breast cancer, do you? I had a patient with breast cancer that metastasized to her jaw . .  .”  Well, my jaw dropped open, and then clenched through a roller coaster week of scans of my head, bones and brain (all normal), and a full body pet scan that showed metastases of my breast cancer to four sites—all soft tissue/lymph nodes.  In the world of Stage IV disease, I am very very early . .   . my cancer is virtually in its infancy. And I have every intention of keeping it there.  I am stunting your growth, you little b . .  .d!!

Wrong assumption # 5: stage IV is a death sentence.  I did not know that stage IV could be livable.  I truly thought that—except in rare instances—stage IV patients were down for the count.  I now understand that with current treatment I am likely to live for 20ish years (at which point I’ll be 75, which sounds way far away to me), and with treatment advances that are likely to emerge in the next decade, I’ll likely live longer than that–maybe even to my original target age of 90. (For some reason at age 45, I decided that 90 was a good ending point.)

I have just completed five rounds of chemotherapy, and am nearing the end of treatment.  The chemo was actually less fatiguing and I experienced fewer side effects this time.   I kept my hair, which shallow but true, makes me feel good about myself.  And I really, really don’t look sick at all, unless one notices my port.  I do suddenly have lymphedema in my right arm, a side effect of having fewer/less functional lymph nodes—even though those lymph nodes were removed surgically almost three years ago.  It’s always something.  But most importantly, the chemo is working! After three rounds, a scan showed that all four cancer sites had decreased in size by about 50%.  These numbers I can handle.  Hallelujah!  Thank you higher powers, and thank you drug developers, doctors, nurses, and everyone else that played a role in this.  Cancer, you’re going down.

Granted, I don’t always feel or act so tough.  Having a lifelong chronic disease is a life change that I haven’t quite wrapped my arms around yet. How exactly does one move on with life, and yet live from scan to scan? I feel like my cancer is a stalker that we may have driven away for awhile, but that is lingering nearby and can move back in at anytime.  My lifelong goal will be to keep him away from the good body parts.

In the meantime, I will continue to do the work I feel passionate about; work out, practice yoga, learn to meditate; be a loving mother, wife, sister, aunt, and friend; get pedicures, and buy rockin’ shoes.  Albeit, I will do all of these things as a cancer patient.  It’s not what I wanted or planned on, but it’s what I’ve got. And we don’t always get to choose.

You can continue to follow Sandi’s story by visiting her own blog, Cancer Diva 4 Ever and be sure to visit the LBBC blog for future posts by Sandi!

As we mentioned on Tuesday, LBBC will host its Annual Conference for Women Living with Metastatic Breast Cancer  Saturday, April 13 and Sunday, April 14 at the Loews Philadelphia Hotel.  The conference is designed to address the complex medical, social and emotional challenges that women diagnosed with metastatic disease, their families and their caregivers experience. To learn more about the conference visit lbbc.org.  In addition, on April 17, LBBC and the Triple Negative Breast Cancer Foundation will conduct a free webinar at 12:00 p.m. EST.  Also accessible by phone, the webinar’s featured guest is Dr. George W. Sledge Jr. Chief, Division of Oncology, Professor of Medicine, Stanford University School of Medicine.  During the call, you’ll hear about today’s standard of care in treating breast cancer that tests negative for the estrogen, progesterone and HER2 neu receptors and gain insight on making the treatment decisions that are right for you.  In addition, how to access clinical trials and get an insider’s look at the latest research on the horizon will also be discussed. Register online or call (610) 645-4567.

What, Me . . . .Cancer??

Today, we welcome first time contributor Sandi Dennis to the Living Beyond Breast Cancer Blog.  Sandi is a long time supporter of LBBC who grew up in Philly and attended Philadelphia High School for Girls (where she is looking forward to her 40th reunion in 2014!). She majored in journalism at Penn State and worked as a TV news reporter in Columbia, South Carolina, prior to attending University of South Carolina Law School. Today she practices FDA/healthcare law, and policy, including work for companies and nonprofits in oncology and patient advocacy.  She lives in Washington, DC, with her husband, daughter and a dog named Lulu.  

 

I know far more about breast cancer than I ever thought I would.  In almost three years, I have gone from knowing a bit more than the average bear (as a healthcare lawyer I have worked with biopharmaceutical companies on treatment advances), to knowing a respectable amount.  And since breast cancer has now become part of my forever, I think I’m heading towards PhD status. Much of what I have learned has altered some of my basic assumptions: of who will be a breast cancer patient (not me, of course), what treatment is involved, what chemotherapy is like, and who will have a recurrence/metastatic disease (again, of course, not me!).

I was wrong on all counts.

First, I couldn’t count on lack of family history, my generally healthy lifestyle and overall excellent health, or regular mammograms and exams.  Cancer thumbed its nose at all of that. In April 2010–while trying to print out my boarding pass for a trip to Mexico and a week of intensive yoga, hiking, and vegetarian meals—I felt a lump just above my right breast.  I was not doing a self-breast exam; I think I was scratching under my arm.  If my Internet connection had been faster, I likely would not have found it.

Second, once I swallowed the “you have breast cancer” news (and bought a fabulous pair of retro-vintage high heeled mary janes in ecru lace with black leather trim), I thought I was just meeting with my surgeon to schedule a surgery date.

(said mary janes)

I went alone, planned to drive to my office afterwards, hopefully in time for a late-morning meeting.  What was the big deal? Just a lumpectomy, I thought, maybe an estrogen-lowering drug . . .  but no, a diagnosis I’d never heard of: “triple negative . .   chemotherapy . .  you will lose your beautiful hair . . . “  I could not swallow those words.  The shoes did not help.  I called my two best friends who came to get me and my car, and stayed with me until my husband could get home.  He proceeded to refinance our mortgage at a lower rate.  I have no recollection of what I did for the rest of that day.

Third, I assumed chemo patients were pale, thin, and sickly, and expected to have my head in the toilet for days. Here, the reality was better than my assumptions. While chemo is no day at the beach, it can be livable and tolerable.  I worked, continued my workouts and yoga, and never felt nauseous, thanks to the advances in treatment of chemo side effects.  I got pedicures, which I once would’ve thought were verboten for chemo patients. I actually gained a bit of weight from steroids, and I never really looked sick, unless someone caught a glimpse of me without one of my wigs on (which did occur in yoga—95 degrees and sweat are not good for wigs!)

Fourth, once I got through surgery, chemo, and radiation, my “beautiful” hair grew back, and I became less fatigued (although fatigue never completely went away), I thought I was home free.  My chance of recurrence was decreasing every year, and at this point was only about 5%.  On October 14, 2012–exactly 2 1/2 years out AND my 56 1/2 year birthday– I proudly participated in LBBC’s Yoga on the Steps fundraiser in DC,  and was the top individual fundraiser.  (Yay me, and yay, my generous, thoughtful friends and family!) I was called up to the stage and given the microphone & announced that I was cancer-free, exactly halfway through my five year milestone. Yay me, yay science and medicine, yay life!

Wrong again, Mary Lou.

You’ll find the second half of Sandi’s first LBBC blog story on Thursday.  In the meantime, you can learn more about Sandi by visiting her own blog, Cancer Diva 4 Ever.

LBBC will host its Annual Conference for Women Living with Metastatic Breast Cancer  Saturday, April 13 and Sunday, April 14 at the Loews Philadelphia Hotel.  The conference is designed to address the complex medical, social and emotional challenges that women diagnosed with metastatic disease, their families and their caregivers experience. To learn more about the conference visit lbbc.org.  In addition, on April 17, LBBC and the Triple Negative Breast Cancer Foundation will conduct a free webinar at 12:00 p.m. EST.  Also accessible by phone, the webinar’s featured guest is Dr. George W. Sledge Jr. Chief, Division of Oncology, Professor of Medicine, Stanford University School of Medicine.  During the call, you’ll hear about today’s standard of care in treating breast cancer that tests negative for the estrogen, progesterone and HER2 neu receptors and gain insight on making the treatment decisions that are right for you.  In addition, how to access clinical trials and get an insider’s look at the latest research on the horizon will also be discussed. Register online or call (610) 645-4567.

I Talk To Strangers, You Should Too!

Long time LBBC blog contributor, RANDI RENTZ, graduated with honors from The Johns Hopkins University with a Masters degree in Special Education. She was an editorial assistant for a publishing company in suburban Washington,DC before becoming a special education teacher in a school district outside Philadelphia, PA. Randi currently is an Asperger’s Support Teacher for grades kindergarten through fifth. Presently, Randi has her own consulting company for children on the Autistic Spectrum where you can see her work at   www.helpforaspergers.com. She is a proud member, supporter, and blogger for many breast cancer organizations and never leaves the house without diamonds. Visit Randi at her web site at www.randirentz.com. Be sure to check out the teaser for her upcoming book “Why Buy a Wig…When You Can Buy Diamonds!”

***

Call me crazy, but I look forward to waiting in line, and just about any opportunity to shoot the breeze with people I don’t know. I’m chummy with the guy who pumps my gas, (the only gas station nearby where they still pump gas for you), still exchange holiday cards with my 4^th grade elementary school teacher, and the other day I spent a solid hour gabbing with an 81-year old woman I met at the tailor’s while having my pants hemmed.

I’m now a life-long, die-hard people person. I never used to be, though. In fact, I never enjoyed chatty encounters with people I didn’t know…until cancer. I wasn’t hostile before breast cancer.  Every day I had pleasant exchanges with strangers and acquaintances—an enthusiastic “Morning!” or a friendly “Have a great day!”  Such moments continue to be life-affirming, yet, prior to breast cancer, they were blessedly brief.

On-the-fly updates from people I’ve barely met used to drain me. Seriously.  I always felt obliged to respond with genuine emotion, to pay real attention. I would fake outrage or concern, with a performance that was definitely Oscar worthy. That meant stopping whatever I was doing, and force myself to focus. Since my laser-beam concentration was always sensed by the people stopping me, their details got longer and longer. Oy, vey! I felt trapped like a mouse in a maze.

Did breast cancer make me a people person? Well, I think it made me more aware of the little moments in life that make up the big moments. I now enjoy being a true people person—even though I’m inclined to dislike anyone who describes himself/herself this way. Go figure. I digress, sorry. Anyhoo, hear me out. Lifting your head and engaging with whoever happens to be standing next to you is worth the effort. It’s nice to see people smile and to genuinely smile back. It really feels good and refreshing. You should try it.

For one thing, you never know when you will receive priceless advice.  The 81-year-old cautioned me to get in good with my son’s future wife and to always take the dog out for an evening walk to do “its business.” Little did she know, I have no children and own two cats which use a litter-box. Needless to say, I felt it worthy to file away her words of wisdom. Maybe a stepson and a dog are in my future. Who knows? I digress. Sorry. When I left the fitting room, fiddling with the waistband of my pants, she said, “With posture like that, who needs Spanx? Coming from a stooped octogenarian, her words felt like a wake-up call to enjoy my youthful existence.

I believe my world is bigger with my random encounters. My brushes with strangers bring me the thrill of the unexpected, to glimpse a world I used to brush off and otherwise never see or appreciate. In the frenzy of life, with intense money, work and time pressure, I honestly didn’t have much conversational energy to spare.

Now, I think of it as a habit as “meeting new people,” even if I never see them again. My encounters with strangers bring me back to a place where I long to be. I never had grandparents, because they died before I was born.  But now I cherish chance meetings with people of all ages, especially older people. I find their perspective to be rather eye-opening.

Instead of rolling my eyes, I appreciate the interruption. I am so grateful for the little things in life. I now understand what being a warm person means.

And now, onto the Spanx…

LBBC’s Triple-Negative Breast Cancer Focus Groups Need Participants!

Do you have triple-negative breast cancer, or know someone who does? LBBC is planning several focus groups to learn about the needs of women living with triple-negative breast cancer. Groups are planned in the areas of Chapel Hill, N.C., on April 10; Philadelphia, Pa., on April 12 and April 13, (focusing on metastatic breast cancer); and San Francisco, Calif., and Indianapolis, Ind., the last week of April (dates TBD). Groups last 90 minutes, and participants receive a $25 gift card for their time. If you are interested in participating in a focus group, please contact us ASAP at publications@lbbc.org and let us know which location interests you. We will be in touch with more information!

LBBC Introduces New Guide To Understanding Breast Cancer

Living Beyond Breast Cancer (LBBC) has announced the release of Hormonal Therapy, the newest title in this national nonprofit’s library of Guides to Understanding Breast Cancer. It joins nineteen other LBBC publications available in print and electronic formats designed to address the needs of women who have been diagnosed with breast cancer.

 

The guide provides insight and answers about the complexities of hormonal therapy, treatment that reduces estrogen in the body, for women with breast cancer. Hormonal therapy for breast cancer is sometimes referred to as endocrine or anti-estrogen therapy. Breast cancer hormonal therapy can reduce the risk of disease recurrence, prevent new breast cancers and improve survival. Approximately 70% of breast cancers are hormone-sensative¹ and many women are likely to receive hormonal therapy as adjuvant therapy – treatment given after primary therapy.

 

The Guide to Understanding Hormonal Therapy was co-authored by Janine E. Guglielmino, MA, LBBC’s director of publications and strategic initiatives, and medical writer Robin Warshaw.  “At Living Beyond Breast Cancer, we know women face many choices when it’s time to begin treatment for hormone receptor-positive breast cancer,” Guglielmino states. “This guide was developed to help women ask their providers informed questions about how hormonal therapies and their side effects may impact their day-to-day lives.  And since hormonal therapy lasts for many years, the guide aims to address the questions women have today – as well as those that may arise tomorrow – as those concerns may very well change over time.”

 

In addition to Guglielmino and Warshaw, a committee made up of more than a dozen oncology professionals, LBBC staff and women affected by breast cancer reviewed and contributed stories to the sixty-six page guide, which is divided into eight sections and written in clear and easy-to-understand language.  Section topics include hormonal therapy options, common questions about treatment decisions, coping with side effects, what to expect when treatment ends and additional resources.

 

The guide focuses on hormonal therapy for early-stage (ed. note – stage 0-II) or locally advanced (ed. note – stage III) hormone receptor-positive breast cancer. Hormonal therapy is also used to treat recurrent and metastatic (stage IV) hormone positive disease and to prevent first breast cancers in women at high risk for developing breast cancer.

 

“We believe women can play a powerful role in their treatment when they have the resources to help them make informed decisions and be full advocates for their own health,” say LBBC CEO Jean A. Sachs, MSS, MLSP. “In addition to this guide, LBBC has additional resources at lbbc.org.”

 

Free, individual copies of the Guide to Understanding Hormonal Therapy are available online or by calling (610) 645-4567. Larger quantities may be ordered for a small shipping and handling fee.

 

¹National Cancer Institute

Fear of the Unknown

LBBC blogger Vallory Jones is a freelance writer and breast cancer survivor living in Austin, Texas.  A self-professed Zumba “freak” and fitness “fanatic,” she has taught middle school English for 19 years and enjoys mountain biking, singing, writing, and playing guitar.  She recently celebrated a milestone – her first “cancerversary.”  You can read her personal blog at victoriousval.wordpress.com.

I received my diagnosis on Monday afternoon, and by Wednesday morning, I was en route to the oncologist. Dr. Patt came highly recommended, and I felt lucky to score such a last minute slot. The receptionist mentioned the doctor would be leaving for the airport immediately after our meeting, and after having gone to the wrong address already, I frantically punched it back into my GPS, racing to beat the clock. My Kia Soul was a black blur as I zipped in and out of Austin traffic. I couldn’t allow this cancerous tumor to stay in my body any longer than I absolutely had to, and the thought of missing my appointment brought on waves of nausea. I tried to will the tears to stop, but they streamed down my face until I was sobbing full force. I pulled into the parking garage and collected myself. “Wow, you’re a mess,” I told myself, but looking back, I was just a cancer newbie. I wasn’t properly equipped to process this turn of events.

Things sure changed in a hurry. One minute I was planning parties and social hours and the next I was sitting in a doctor’s office gearing up to beat breast cancer. I looked around the waiting room. There were other women who had no hair, and I trembled. “We all have cancer,” I realized. It was an unnerving feeling, and though I physically felt fine, I realized for the first time that something inside me was actively trying to kill me. Words can’t describe that realization. It changed me.

The meeting itself was pleasant enough. My doctor entered the room clad in a grey tweed skirt and jacket. I looked down, and my attention settled on her fashionable, black leather boots. Though I wasn’t aware of her credentials yet, her ensemble impressed the heck out of me. Kelsey, one of my friends, took notes, and I was glad she came along because it was amazing how little information I actually retained. Every time Dr. Patt spoke of the cancer, I felt a rush of heat overwhelm me, and it seemed like maybe I should lie down or at least fan myself. A couple of times I swore I was going to vomit, but that never came to pass.

Invasive Ductal Carcinoma. Most likely Stage 1. Fast growing. ER+/PR+. Lots of medical jargon made way into Kelsey’s notes, and at that moment, it was quite clear that there was no mistake. I really did have cancer, and no amount of disbelief could ever change that. Dr. Patt’s demeanor was reassuring, but my anxiety worsened when she uttered acronyms like MRI and CT scan. Then the words “bone scan” tumbled out of her mouth and slapped me hard in the face.

“Bone scan?” I squeaked. “What? This could be in my bones?” She seemed to think that was unlikely, but talk of these tests put me on pins and needles. I remember clearly the one thought I had for weeks, “I hope that I have a chance to fight this. What if it’s spread and I’ve missed the window?” Now, as a more experienced survivor, I realize that even at advanced stages, one can still live and fight cancer, but as someone who’d never even had anyone close to me diagnosed, I feared the worst. Add to my fears the possibility of chemo, which couldn’t be known, of course, until further testing. My head threatened to explode. Part of me was ready to jump off the table and get started while the rest of me wanted to bury my head in the sand and pretend this wasn’t real. I knew I couldn’t, though, because every day I waited, I feared my tumor was growing, or even worse, spreading to other places.

There aren’t adequate words to capture how I felt during those first weeks. I waited. I wondered. Would I see another birthday? Would I get another Christmas? My days were filled with tests and alternated between moments of strength and desperation. The poking and prodding made me feel like a science project, and if I never see a hospital gown again, it will be too soon. Like every other survivor will tell you, any modesty I had prior to cancer was certainly lost within the first week of my diagnosis. Getting up each day, putting one foot in front of the other, and making myself go to appointments was harder than anything I’d ever had to face.

I’m sure that’s why 16 months later, I feel invincible and like I should wear a cape every day to work, the grocery store, or the gym. As far back as I can remember, I’ve always had role models. Now here I am, my own hero. Quite honestly, that feels pretty good.

YOGA ON THE STEPS: WASHINGTON, DC REGISTRATION NOW OPEN

 

 

Registration is now open for Yoga on the Steps: Washington DC, the signature education and fundraising event for Haverford, PA-based nonprofit Living Beyond Breast Cancer.  The event is scheduled to take place rain or shine beginning at 5:30 p.m. Thursday, June 13 on the northeast quadrant of The Washington Monument.  The highlight of the event is a one-hour yoga class for all ages and skill levels designed and led by Yoga Alliance certified instructor and founder of Yoga Unites® Jennifer Schelter, MFA with Kirtan accompaniment by Yvette Pecoraro and other local area musicians. After the class, participants can enjoy refreshments while visiting a Healthy Living Expo where event sponsors, local area businesses, yoga studios and nonprofit organizations will feature products and services promoting health and wellness.

“While Yoga on the Steps is similar to other nonprofit grassroots fundraisers it really is a one-of-kind event,” explains Jenna Jackson, LBBC’s special events manager.  “People are asked to register as a team captain or participant at yogaonthesteps.org and then fundraise for LBBC by asking family, friends and colleagues for donations. But instead of using a walk or run as our event’s centerpiece, we feature a yoga class.  Jennifer has designed the class so that anyone, regardless of skill level or body type can participate. Yoga on the Steps is a unique and powerful education program in its promotion of yoga as an important part of a person’s overall wellness plan.” t is scheduled to take place rain or shine beginning at 5:30 p.m. Thursday, June 13 on the northeast quadrant of The Washington Monument.  The highlight of the event is a one-hour yoga class for all ages and skill levels designed and led by Yoga Alliance certified instructor and founder of Yoga Unites® Jennifer Schelter, MFA with Kirtan accompaniment by Yvette Pecoraro and other local area musicians. After the class, participants can enjoy refreshments while visiting a Healthy Living Expo where event sponsors, local area businesses, yoga studios and nonprofit organizations will feature products and services promoting health and wellness.

What has grown into LBBC’s signature education and fundraising event began after Schelter’s friend and student, Courtney Kapp, was diagnosed with breast cancer.  Kapp wanted to use her home as a place where women with the disease could form a support network through the practice of yoga. She asked Jennifer to teach the class and also introduced her to LBBC’s executive director (now chief executive officer) Jean Sachs, MSS, MLSP. Together, the three women founded Yoga on the Steps.

“Now,” says Sachs, “thousands of people, most with no formal training, annually attend Yoga on the Steps in different cities to raise awareness of LBBC’s resources, stand in solidarity with women diagnosed with breast cancer and honor the memories of those who are no longer with us.”

Studies continue to indicate a correlation between yoga’s stretching exercises, controlled breathing and relaxation techniques with stress reduction, lower blood pressure and improved heart function. “More and more studies we’ve been seeing, especially over the last few years, really confirm the relevance of Yoga on the Steps,” states Sachs.

 

A study conducted by UCLA researchers suggests that yoga can help women overcome post-treatment fatigue which is estimated to affect as many as one-third of women currently in breast cancer treatment. The research, which was published December 16, 2011 in the journal Cancer, discovered that after three-months-worth of twice-weekly yoga classes, “a group of breast cancer survivors in California reported significantly diminished fatigue and increased vigor,” Andrew M. Seaman of Reuters Health said. Cancer, Volume 118, Issue 15

In addition, at the 34th Annual San Antonio Breast Cancer Symposium held in 2011, a study presented findings that women with metastatic breast cancer might benefit from the practice of yoga, as well. A small randomized trial was collaboratively conducted by yogis and physicians, including S.K. Gopinath, MD, from the Department of Surgical, Medical and Radiation Oncology at the HCG-BIO Super Specialty Center in Bangalore, Karnataka, India. The researchers found data that suggest the practice of yoga might reduce psychological distress and modulate abnormal cortisol levels as well as immune responses in patients with stage-IV disease. Medscape News Today

In 2011, LBBC began the implementation of a national Yoga on the Steps expansion initiative developed by the organization’s Board of Directors and senior staff as part of LBBC’s 2011-2015 strategic plan.  “Yoga on the Steps is a low-cost, high-return way to introduce LBBC resources to communities that may not know of their availability,” explains Sachs.  “We’ve established annual events in Philadelphia, Washington, DC and Denver with Kansas City, Missouri recently named as our fourth Yoga on the Steps host city.”

“The increasing popularity of yoga is a big factor in the growing success of the event,” she continues. “But more than that, it’s LBBC’s reputation of sound fiscal management and the trust our supporters have in us that energizes Yoga on the Steps participants to fundraise for LBBC at the grassroots level. We maintain the lowest overhead possible for the event ensuring our resources are always available to anyone in need.”

LBBC’s most recent annual report, released in July of 2011, shows that 86 cents of every donated dollar is used to fund services. For eight consecutive years LBBC has been awarded a four-star rating by Charity Navigator, the  country’s leading organization that evaluates American nonprofits, signifying it exceeds industry standards and outperforms most other charities within its cause. LBBC 2011 Annual Report

Businesses wanting to learn more about national and local sponsorship opportunities and benefits are asked to contact LBBC’s associate director of marketing and corporate relations Kevin Gianotto, at kevin@lbbc.org. General Yoga on the Steps and Healthy Living Expo questions should be directed to Jackson by emailing jenna@lbbc.org. 

About

LBBC provides services designed to help improve quality of life for women who are newly diagnosed, in treatment, recovery, years beyond their diagnosis or living with metastatic breast cancer as well as resources for family, friends and caregivers.  National conferences, monthly teleconferences, regional community meetings, the Guides to Understanding Breast Cancer and a toll-free Survivors’ Helpline are examples of the services that are provided to help them make informed decisions for themselves and their families. 

If you are or someone you know is living with a history of breast cancer, regardless of stage of diagnosis, age, race, religion, sexual orientation or ability to pay, LBBC can help. For more information, visit lbbc.org to download a free copy of Empower, LBBC’s general information brochure or call (610) 645-4567.