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

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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!

Fear of the Unknown

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C4YW 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.

A NY State of Mind – Part II

Jennifer Yong, 33 was diagnosed with Stage IIB Breast Cancer in 2011 and is currently awaiting full reconstruction surgery scheduled for the Spring of 2013. A graduate of Emerson College in Boston, MA with a BA in Visual Arts Jen loves good jazz, hip hop, art in all forms, being crafty, eating good food and random makeover and reality television shows. 

Jen attending C4YW 2013 at the end of February, is pictured below with Living Beyond Breast Cancer’s Associate Director of Marketing, Kevin Gianotto.

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We introduced you to Jen last month in her debut blog.  Today, she continues her story. 

It was my Dr. I could sense she was nervous and didn’t know how to really tell me the news but she eventually told me my results were positive and then in not so many words she says to me….”by the way you have cancer Jen.”

My heart sank. WHAT?! Stage II B Breast Cancer and it spread to under my arm to my lymph nodes.

I didn’t cry. I didn’t get emotional. I was just numb. I can tell you the first thought I had was vain and it was absolutely ridiculous but I thought about how I was going to lose my hair. That struck a huge nerve with me and I denied that for awhile. I just sat there dumbfounded. Then I had to call my parents and my brother to tell them the news. It was probably the worst day of my life. I then had to slowly tell all my friends one by one. It just was not a good time.

After the news everything happened almost immediately. Before Thanksgiving I had to get my port put in, and then by Black Friday that was my very first chemo session. It was all very scary and everything was already planned out for me. I had to do MRI’s, CAT scans, Echo-Cardiograms, more testing, you name it. By the second chemo session I was starting to get nauseous and sick. I dreaded coming back in the next day when I felt the worse to get my shot to boost up my white cell counts. I just wanted to hibernate.

Then my hair started falling out in clumps one day and I lost it. That was the first time I ever cried about my diagnosis. That made everything real. My beautiful hair that I had pride and joy in and had fun dying and changing and was such a big girly part of me was now being yanked away and dispersed all over my pillows. That was the toughest time for me. I could withstand the strong chemo and the blood tests and I never threw up once in all the 16 chemo sessions I had to do, but then I cried like a baby the minute my hair fell out. Not long after that I got annoyed with the shedding, I got over my fear and had the special guy in my life shave it all off. I found fun and happiness in wearing and buying all types of wigs so I could hide my baldness and sickness from people. It was like my own little secret.

In between all the chemo, I had to find new health insurance which was beyond stressful. I had my first 2 chemo treatments with one Dr. in one area and then I had to jump ship and continue at my local hospital with a brand new team. On top of all of this I also had to move to another apartment when I was physically at my weakest so that added a lot of crying fits and craziness. I also lived on a 3rd floor apartment building so coming home after chemo was a huge challenge in general. My parents were nice enough to let me crash at their house while I was recovering from the worse of the chemo. Thank goodness my current apt is on the ground floor!

I finished all my chemo in May 2012, and then in June I had a left side mastectomy done with tissue expanders placed inside and got fills from my plastic surgeon every couple of weeks. I also committed myself to doing the Komen 3 day walk with a close friend one month after surgery and it was a wonderful experience to be able to physically do that and accomplish something with so many other women that have been affected by Breast Cancer. I also got genetic testing done and I am Her 2 positive so I decided that I am going to get rid of my right breast as well. I moved on to doing 28 rounds of radiation and finished that back in Oct. 2011. As of right now I am waiting for reconstruction surgery on my left breast, the removal of my right breast and full reconstruction on both. I also just started on Tamoxifen alongside receiving estrogen blocking shots every 3 months for the next 5 years. Whew!

I definitely couldn’t have gone through all of this in one piece without the support of my friends and family. They have sat with me patiently during chemo and endured my crazy mood swings!
Getting diagnosed with breast cancer at age 31 was definitely not a fun experience. It challenges your mind and puts your body through hell! Emotionally it’s been very hard to move on with life but I am doing it one day at a time at my own pace. It’s hard to be positive all the time but I refuse to let breast cancer define or defeat my spirit. I am proud of where I came from and how I have picked myself up (with lots of help of course) and I want to be able to help others get through it as well.

I know somewhere where there are bright rainbows and sunny skies, my “yan yan” is watching over me every day and smiling at my newest crazy colorful and ridiculous wig! She is my “kindred spirit.”

Jen will be back in the coming weeks as she tells her story leading up top breast reconstruction.  And, be sure to follow her personal blog to learn more about this amazing woman’s journey beyond her diagnosis.