Unveiling the Cancer Insurance Checklist!

As we find ourselves just a few days away from the opening of states’ Health Insurance Marketplaces/Exchanges established as part of the Affordable Care Act (ACA), Living Beyond Breast Cancer is pleased to announce the launch of the Cancer Insurance Checklist, a resource developed in partnership with 18 other cancer and healthcare advocacy organizations, with the generous financial support of Novartis Oncology. 

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An estimated 7 million uninsured or underinsured people will be using the Health Insurance Marketplaces/Exchanges  to obtain health insurance coverage in 2014. Knowing this, Living Beyond Breast Cancer is pleased to present the Cancer Insurance Checklist , a tool designed with several partner organizations specifically to help those with a history of, at risk of developing, or presently diagnosed with cancer find the insurance plan within their budget that best meets their healthcare coverage needs.

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Our New Vision and Mission

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This morning, Living Beyond Breast Cancer’s CEO Jean Sachs released the following message to our friends and supporters:

Dear Friends:

All of us at Living Beyond Breast Cancer are excited to share our new vision and mission statements with you:

Our new vision

A world where no one impacted by breast cancer feels uninformed or alone.

Our new mission

To connect people with trusted breast cancer information and a community of support.

These new statements were developed with the help of over 1,200 of you who responded to a survey we sent out earlier this year. Your input was used in a day-long retreat with members of the board of directors and staff. We learned what LBBC services are valued most and why so many have come to depend on our educational programs and services that allow for connection to others diagnosed with breast cancer.

For me, these new statements say with clarity what we strive to do every day and what we hope to achieve over time. Yesterday, I spoke with a long-time friend who had just been diagnosed with breast cancer.  She was overwhelmed, scared and shocked. Our conversation and the resources I was able to put in her hands grounded her and provided her with enough comfort and confidence to take the next step.

This is what LBBC does every day, and it is exactly what the new vision and mission statements express.

I hope you share my enthusiasm and, as always, if you have comments I would love to hear from you.

Warmly,

Jean 

Jean A. Sachs, MSS, MLSP

Chief Executive Officer

LBBC

I Talk To Strangers, You Should Too!

randi rentz

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!”

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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 4th 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…

“Yes darlin’, – it does.”

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If we followed format, this is where we’d introduce you to LBBC’s newest blogger, Laura Renegar, with a few polite lines that could never  do justice to this amazingly talented and funny lady.  We’re still laughing over this offering of honesty:

When I had expanders in my chest they kind of formed a shelf below my collar bone. When I was sick and in bed and would eat propped up, I would CONSTANTLY have toast crumbs or Oreo crumbs on that “shelf” on my chest. Once I found a whole chocolate chip sitting there and once I found a piece of turkey. There are funny moments during expansion and reconstruction. 

Here is the first of a planned series of blogs where Laura will share her experiences as a woman diagnosed with triple-negative breast cancer.

On March 1, 2011, I received the call that every woman dreads. I was at work, sitting at my desk, holding my cell phone that showed the name of my OB/GYN calling. My mind debated about not answering the phone, but quickly considered the possibility that this phone call could be good news. When I answered that call, my life, and the life of my family and friends would be forever changed. “You have breast cancer” my doctor said, “I am sorry.” We talked for a few minutes as I sat numbly at my desk writing the name and number of the surgeon he suggested on a small piece of scrap paper.

A few days later my husband and I met my surgeon and his nurse. Right in the beginning of the appointment the doctor said “can I joke with you?” Are you kidding me? This was my kind of doctor! Not only did I want him to be able to joke with me, I needed him to be able to joke with me. No matter how serious breast cancer can be, I needed my medical team to be brutally honest, caring, and compassionate yet able to lighten some of the moments with a joke or some laughter.

My surgeon recommended genetic testing and I agreed to see a genetic counselor for my BRCA test. I had the blood test and genetic counseling and the waiting began. One week became two weeks. My insurance company was negotiating with the genetic testing company about my coverage for this $3,400 blood test. Two weeks! My surgeon scheduled my lumpectomy and sentinel node biopsy because he couldn’t allow my cancer to continue to grow and spread while waiting for the insurance company to make a decision. At this point I began to realize that my cancer was most likely aggressive. I was told that my cancer would be staged, and further diagnosed, when the tumor was removed during the lumpectomy. I felt lost and left somewhat in the dark. Every day seemed as if we were hurrying up for a test or an appointment and then we were waiting. I felt like we were always waiting for a call, an answer, or a test result. I felt immediate relief the night of the lumpectomy and sentinel node biopsy surgery, knowing that my cancer had been removed. I was very happy to have the surgery behind me, but little did I know that my real roller coaster ride was just beginning.

Two days after my surgery I got a phone call from the genetics counselor. Once again, a phone call that I was hoping was going to deliver good news – but I heard hard news instead. The phone call began with “I am sorry to tell you this, two days after your surgery, but your BRCA test came back positive yesterday.” What? The BRCA2 gene mutation put a whole different spin on my diagnosis. Now I felt as if I was at the bottom of the roller coaster loop and I began researching. My odds of getting breast cancer were obviously 100% (since I already had it) and the test showed my odds of getting ovarian cancer were over 50%. But what does this test say, and prove, about my chance of recurrence? I was recuperating from the surgery yet my mind and heart were nagged by this BRCA test result and worrying already about a recurrence. Five more days passed and we still had not gotten news on my pathology report from my lumpectomy. No news is good news right? Eight days after my lumpectomy, I was at work, and my phone rang; it was my surgeon’s nurse. No news was good news! My lymph nodes were negative for cancer and he was able to get clear margins. I am ecstatic, we are all celebrating and dancing around, and now I feel like I am on one of the upper tracks of my roller coaster ride.

Clear margins AND clean lymph nodes? How blessed am I? I am on the top of the world!

The next day I receive another phone call, this time it is with the result of my her2 neu test. I was still riding high on the lack of cancerous activity in my lymph nodes and the fact that he was able to get clear margins. My surgeon stated that my her2 neu test came back negative. I got very quiet and said to my surgeon, “this means I am triple negative, doesn’t it?”

He paused on the other end of the phone and said “Yes darlin’, – it does.”

On April 17, LBBC and the Triple Negative Breast Cancer Foundation will host 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.

In addition, you can order a free copy of LBBC’s Guide to Understanding Triple-Negative Breast Cancer,  that offers helpful information, whether you have just been diagnosed or you are moving forward after treatment.

Be sure to check out Laura’s blogtoo!

Alysa Cummings: Greetings from CancerLand

Alysa Cummings, the facilitator for Living Beyond Breast Cancer‘s Writing Series: Writing the Journey, is featured in our second helping of this month’s LBBC‘s Writer’s Corner. This piece, “Me and my Vampire,” is excerpted from the her book, Greetings from CancerLand, now available online from Amazon and Barnes & Noble.

Me and My Vampire

I grip the envelope tightly in my hand. The words Pre-admission Testing are block printed in black ink across the front. Inside there’s a form already filled out with my name, birthday and date of surgery, along with a long list of mysterious acronyms and medical abbreviations.

Time for a little pep talk. I can’t help but think about what’s ahead for me – another major surgery with weeks of recovery. But this morning, what’s happening today will be a piece of cake by comparison. Easy as can be. No big deal. After all, I should be a total pro by now after years of practice, right? Anybody like me who has spent so much time in CancerLand knows the pre-op drill by heart and it goes like this: get your pre-admission testing done, or else no surgery…

I walk into the waiting room. There’s a machine on the wall that spits out slips of paper, (now serving number 86) just like in a bakery. I reach out ready to press down the red lever, when I read a nearby sign that proclaims, Pre-admission Testing Patients Do Not Need to Take a Number!!!

The three exclamation marks on the sign do their work well. No number for me. I slouch down in a molded plastic chair and silently think to myself, how is it possible after ten years in CancerLand that I still feel like such a stranger in a strange land?

I hear my name badly mispronounced over the loudspeaker. No one else responds, so I get up and walk into an examination room and stretch out on the table. After some sticker placement and untangling of wires, the technician finishes the EKG. In seconds it seems. Certainly in less time than it took me to walk back and forth to the Information Desk.

Getting tubes of blood out of me will be more of a challenge. But, then again, it always is. Sorry, I know that I’m a tough stick, I say to the technician. One butterfly, one painful stick, one swollen arm, and the tech graciously admits defeat.

Come with me, she says with a smile. I’m taking you to see The Vampire.

I follow the technician into a back room where a dark-haired man dressed in blue scrubs is standing up, peering at a computer screen on the counter.

I’ve got a tough stick for you, says the technician to The Vampire.

I sit in the chair and offer up my bare left arm to The Vampire. He looks down and studies my arm intently. While he concentrates on my veins, I check him out: (Good news; no fangs) luminous brown eyes with dark super long eyelashes, an ornamental red mark on his forehead between his eyebrows. I look at his exotically handsome face and decide that he could be the lead actor in a Bollywood feature if he wasn’t already the star of the pre-admissions testing department.

Why do they call you The Vampire? I ask.

Because I like tough sticks, he says slowly in a heavy foreign accent.

What’s your secret to hitting the tough sticks? I ask.

No secret really. I’m just the best. Trust me, it is a very spiritual thing, he says stroking the skin near the crook of my arm.

I make a fist out of habit. There’s no need, says The Vampire. Open your hand. Relax. Close your eyes and breathe and I will get the three tubes of blood we need, one-two-three-no problem. Trust me. Trust me…

His soft voice lulls me and sends me to a calmer place.

He glances down at my paperwork, Oh, I see that your birthday is coming up later this month.

He begins to sing softly and even with my eyes closed, I join him: Happy Birthday to you, Happy Birthday to you, Happy Birthday, Alysa Cummings, Happy Birthday to you.

I am done, he says, holding up the three vials of blood, and this is your birthday present.

I open my eyes and can’t help but smile. Birthday present? I’ll say it is! A gift of no pain. No bruises. My pre-admission testing completed. Thank you doesn’t begin to cover it.

Minutes later, I am halfway across the hospital parking lot on my way to the car before I realize that I forgot to ask The Vampire an essential question.

I couldn’t help but wonder –were his eyes closed too?

Living Beyond Breast Cancer will host another Writing the Journey Series in the Fall. Check back to the LBBC Blog for more insights from Alysa Cummings and future Writing the Journey creations.

Tim Miller: A Thank You from Kim

Nurses play a critical role after a breast cancer diagnosis.  Did you know that May is Oncology Nursing Month? In recognition of their hard word,  Living Beyond Breast Cancer is featuring stories from our readers in celebration of their oncology nurses. Here an LBBC Volunteer, Tim Miller, shares a very special letter from his wife.

Hi, my name is Timothy Miller. When I first heard that LBBC was honoring oncology nurses this month, I knew that I had to write this blog.  My beautiful wife, Kim, was diagnosed with breast cancer in early 2007 and lost her battle on January 2nd 2011.   My wife loved her doctor, Nancy Lewis, very much; she is the most incredible doctor to our family. But Kim would always talk about how she loved “her girls.” Her oncology nurses were always there for her every need.  A bad day in the hospital can set a cancer patient back for a week. I don’t think oncology nurses get the credit they deserve, because they do it all! From giving meds, to doing inter-personal things, but most of all the compassion they give is incredible.   The last year of Kim’s life was very tough on her and our whole family. From August until the day before thanksgiving, she was in the Jefferson hospital 3rd floor oncology unit—three months is a long time. I had to work and take care of two boys and when I couldn’t make it up there she would say, “Don’t worry, my girls got me! I couldn’t make it without my girls.”

Right before Kim went in the hospital in August, we found out she needed chemo for the first time since her first round when she was diagnosed. We went to a park on her 46th birthday and took family pictures before she lost her hair; it was a very special day for us. The next day, everything went crazy and she was admitted to the hospital for her three month stay.  Kim decided to shave her hair so she would not get upset over every piece that fell out. There was a wonderful oncology nurse named Megan in Jefferson’s oncology unit. That day she had finished her shift but she came to check on Kim. Megan helped us take care of Kim’s hair and stayed with us during that traumatic moment in our lives. When I told my son, Brian, that I was going to write this blog, he said, “Write about that pretty nurse that helped us shave mommy hair.”

I believe that life is about the little moments that come up. This one moment in my family’s lives consisted of a wonderful oncology nurse named Megan who stepped in to our moment and helped us get through it. After Kim passed away, I was going through a few of her things. I found a letter she was writing to the president of Jefferson Hospital about her treatment there, but more importantly, about “her girls” who helped her through the worst time of her life. She loved those girls!  I truly wanted to print her letter for this blog as her final “shout-out” to her girls on the 3rd floor oncology unit at Jefferson hospital—thank you girls from the bottom of my heart.  ~ Tim Miller

Kim and Tim Miller

“To whom it may concern,

 President and CEO of Thomas Jefferson Hospital Administration

Dear Mr. So & So,

I am a fourth stage breast cancer patient in your hospital (August 2010) and I thought I would take the time to write this letter to share my appreciation to you and your staff, right down the line from the kitchen workers to the doctors. Everyone was great. I’ve had cancer for four years now and I went to other hospitals as well, but the treatment at Jeff was outstanding. My nurses made me feel really comfortable and they were so nice and cheerful. Jaclyn, Megan, Eleanor: I think these people deserve stars and should be appreciated for the job well done that they do every day. When you love your job, it shows, and they show it! I was taken down for a few tests, but this one stands out: Rayal* was the tech’s name and from the second he walked up to me he had a big smile, laughing and talking. To me they were like welcoming friends, and that’s what I needed.  He is a great guy who started my day off very good even being in the hospital. I still had good days and bad days, but looking back on my stay at Jeff, I’m not afraid to go back because I know that way I am going to be treated and that’s half the stress right there—knowing I can concentrate on getting well.

Thanks,

Kim Miller”

 

*Exact spelling unavailable

Visit the LBBC website for further information on the importance of your medical team and honor your own oncology nurse by making a donation in his or her name to Living Beyond Breast Cancer.