The Turning Challenge

Hear My Voice Outreach volunteer Maggie Kudirka started #TheTurningChallenge to help raise research funds and awareness of resources for metastatic breast cancer.

One year ago, when I was 23 years old, I learned that I have metastatic breast cancer that has spread to my sternum, spine, and pelvis. Metastatic cancer is cancer that has spread from its original location to another body part.  It is sometimes called advanced cancer or stage 4 cancer.

I am among the 10% of women who are initially diagnosed with metastatic breast cancer. It was the last thing I expected.  Other than being female, I have none of the risk factors for breast cancer: I am very young, thin, physically active and fit. I have never used any hormonal medications; I don’t smoke, drink, or use drugs; I eat a healthy diet.  Genetic testing indicated I do not carry the breast cancer genes. But, I have metastatic breast cancer.

Metastasis is what makes breast cancer a deadly disease. It is the leading cause of death in young women with breast cancer. In fact, every day 108 American women die from metastatic breast cancer. This is over 40,000 women each year and this number has held steady for the last 15 years. If a cure is not found soon, one day it will be me.

Billions of dollars are raised for breast cancer, but only 2% goes toward research to find a cure for metastatic breast cancer.  Most of the money raised is spent on awareness, early detection, and treatments for early stages of breast cancer. Early detection does not guarantee a cure, and successfully treating early-stage breast cancer does not mean that one never has to worry about cancer again. Metastatic breast cancer can occur many years after the patient’s original diagnosis and treatment.

Until a cure is found for metastatic breast cancer, no one with breast cancer can ever be certain that they are cured, even after both breasts have been removed and no cancer is detected following surgery. Our current technology cannot detect whether very tiny breast cancer stem cells have traveled to a new body part. These cancer cells sometimes begin growing after surgery, radiation, and chemotherapy have been completed. In fact, this will happen to about 30% of the women who were successfully treated for early stages of breast cancer. Months, years, or even decades later, they will develop stage 4 breast cancer and die. It is a possibility that no one wants to talk about.  It is the elephant in every breast cancer patient’s room.

Please help raise awareness and funds for metastatic breast cancer research by joining me in the Turning Challenge.  Let’s send a message to breast cancer fundraising operations to turn around and look at us Stage 4 patients; we deserve more than 2 percent.

I started the Turning Challenge as part of my work as a Hear My Voice Outreach volunteer for Living Beyond Breast Cancer. I knew I wanted my outreach project to combine a fun activity with my passion for raising funds for metastatic breast cancer and educating people about the disease.

The Turning Challenge can be fun for everyone: both dancers and non-dancers.  All that you have to do is post a video of spinning or rotating in some fashion.  It can be as simple as the Hokie Pokie or as difficult as 32 fouettes. You can hold a spinning object like a pinwheel or film your pet dog chasing his tail.  There are no rules!

Inspire, entertain, amuse – or just make us smile! Be creative!

Please use  #TheTurningChallenge and nominate three or more friends.  If you prefer not to complete the challenge, please make a donation to METAvivor where 100% of your donation will go to metastatic breast cancer research. Also, visit LBBC.ORG to learn more about metastatic breast cancer and resources available to people living with the disease. Share this information with people living with stage IV breast cancer.

Help make this a Turning Point for metastatic breast cancer research and resources.

The Internal Tug-o-War

Jessica Karabian is an LBBC Young Advocate. A version of this post appeared in her blog, Eyes up here, this is beyond my breast. Learn about our Fall 2015 Young Advocate Program.

jessica for blog
My name is Jessica Karabian, and I have Stage IV metastatic breast cancer.  It sounds like an introduction to an AA meeting to me, but to others (to the healthy ones) it sounds like a warrior call. For two years, I’ve lived in a world where there were two groups of people: People with cancer and people without cancer.

I have a story. It’s long–full of twist and turns. My story has a baby and a separated marriage, good relationships and bad relationships, endless doctors appointments and two separate diagnoses. It is complicated, but so is the story of anyone who has been diagnosed with cancer. Let’s be honest: If you have heard the words “You have cancer,” from that point on, life no longer goes smoothly. So once I heard that life changing sentence, the tug-o-war in my mind began. Every day, every hour, every minute it tugged in my mind. Am I living or am I dying?  At 29 years young, I became fixated on if I was living with cancer or dying from cancer. Not the sentence I thought would be replaying in my mind like a scratched record player.

So, fast forward to my mother asking me if I wanted to attend a Living Beyond Breast Cancer (LBBC) conference. I decided maybe I should. Maybe opening myself up to support, knowledge, and education wouldn’t be the worst idea in the world. It definitely beat the alternative to an all-day pajama commitment I had subconsciously made with myself.  After my third conference, I received an email from LBBC letting women under the age of 45  know that they were training for young advocates in Philadelphia for a three-day training weekend. I held no reservation and filled out the application. In fact, I put a lot of hope into it. Due to the conferences I had attended, I started to feel the need to participate in spreading knowledge.  KNOWLEDGE vs. AWARENESS… they are two very different concepts. Now all this time the tug-o-war continued.  Even through the participation and education, I continued with “Am I dying or am I living with cancer?” After several weeks of waiting and one phone interview later, I received my acceptance email. I was beyond thrilled to say the very least. I knew when I received this acceptance it was something very important to my healing. I wasn’t sure how it would play out exactly, but I knew it would be therapeutic and healing for me.

The day I was to leave, I found out an Internet support friend (who was an LBBC Young Advocate) named Sarah Merchant died that morning from metastatic breast cancer. Tug-o-war, please commence. I was so saddened by her passing that I was tempted not to go. I packed slowly–taking frequent breaks to lock myself in the bathroom to shed tears. I knew if I bailed on this opportunity I would regret it later. And so on the drive down, I spoke to Sarah and asked her to give me some sign I was doing the right thing and that this would indeed be purposeful and healing. When I arrived, I checked into my private room. I have to admit, I enjoyed the solitude and silence. I freshened up for dinner and the scheduled meet-and-greet and headed down to the lobby. I sat on the couch making small talk with the other brave women who were selected when I met a very stylish women who wore a fabulous dress. She introduced herself as Sara and she, too, was diagnosed with stage IV breast cancer. We hit it off from our first conversation! She, like me, was combining Western and eastern medicine to heal her body. We talked all through dinner. She was bold, smart, creative, and sensitive. I knew instantly that Sara was my sign from Sarah Merchant. She connected us through this crazy universe, and by doing that, she was letting me know she was okay and where she was supposed to be and I was exactly where I needed to be in life.

I learned so much during that intense weekend. My brain was spilling over with knowledge. But most of all, I made the most intense bonds with some of the most courageous and awe-inspiring women. And slowly throughout the weekend, the tug-o-war ended. That weekend taught me many things, but the most important thing it taught me was that I found where I needed to be in this world. I am not living or dying from cancer, I am existing with cancer. I am thriving with cancer. And like everyone else who is born, I am going to eventually die, but until then, my place in this world is to be involved with the education of and support for any young woman who has heard that crashing sentence: “You have breast cancer.”

So, the tug of war in my mind ended, and a gift was given to me. A gift of placement in this crazy beautiful world. The greatest gift I ever received.

Good, Confident and Sexy: Becoming Whole Again

Breast cancer can impact sex, intimacy and body image whether you’re single or in a relationship. In anticipation of our Twitter Chat on Wednesday, June 24, AnaOno Intimates Owner Dana Donofree blogs about her experience regaining confidence and embracing her desirability after treatment.

Dana_Broken Dolls post

I often compare myself to a broken doll. Not the kind that was so beloved, it was carried everywhere, slowly fading and falling into disrepair over time as if it were aging gracefully. More like the kind that was once beautiful, but its owner decided to take construction paper scissors and hack its hair down to oddly shaped tufts, to accidentally (or on purpose) break off a limb or two, scar the midsection with a Sharpie and leave it half bent and mutilated in in the corner of her closet.

Because that’s what breast cancer did to me. It took a perfectly acceptable woman and turned her into a shadow of herself, and when it is all said and done, it made her feel broken, ruined and rejected.

When I was first diagnosed, what was about to happen to my outward appearance wasn’t even on my mind. I thought I had it all together, the strength, the attitude, the “let’s do this.”

See, I was never terribly attached to my breasts. I never even really thought about them all that much. I was 27. My boobs were small, but perky. They hadn’t done anything hero-worthy like nourish a child. Their biggest accomplishment was being able to exist without a bra. Their greatest time to shine was on weekend party nights when they could hang out in a super low-cut blouse and up my va va voom quotient.

So, when the time came to go our very separate ways, my friends threw a “Ta-Ta to Dana’s Ta-Tas” party and they had one last night out on the town in the lowest plunging neckline I could find.

I was pretty flippant and casual about parting with my two of my lady parts. Friends and family took bets on which of my surgeons, Dr. McDreamy and Dr. Hottie, was the better catch. I joked that they would be the last to ever cop a feel of my original breasts.

I thought I was going to be just fine afterward. That it wouldn’t faze me in the least.

But, I never could have prepared myself for what it felt like, both physically and mentally, when I woke from surgery. For something I felt I was completely comfortable with and ready for, losing them, my breasts, shook my world.

I took off the bandages, and saw this alien staring back at me in the mirror. I was mutilated. I was swollen. My scars were their own entity  purple and protruding like someone had chainsawed me up and stapled me back together.

It is not at all what I had imagined. Where was this “We are replacing your boobs with ones just like them so you can feel ‘normal’?” I hadn’t expected to look like a badly-repaired Lego. I expected to kinda come out looking more implanty-boob-job like. This body was the farthest cry from normal I could have ever imagined. Continue reading

My Mom Was Diagnosed with Breast Cancer: A Teen’s Perspective

“Your mom has breast cancer.” It’s never easy to hear that sentence, especially for young kids. Jordan Vespoli reflects on hearing those words at age 9, how he supported his family and  now, at age 16, helps other kids who learn their mom has a breast cancer diagnosis.

Jordan and his mom_blog

On October 30, 2008, my mom and dad sat me down on my bed to give me some news. I couldn’t imagine what they were going to say to me, but I knew it was serious.  My mom had breast cancer. Cancer? What is that? I was pretty smart for a 9-year-old kid. I knew it had something to do with bad cells in your body and I knew that it was life threatening. I sat and listened.  When they asked me if I had any question, I said nothing. I did not know what to say.

So when they left my room, I sat there motionless and deep in thought.  I went through my days as I usually did, which was going to school, playing basketball and doing my homework. Inside, I felt scared and angry. I did not know anyone whose mom had ever had breast cancer.

After some time, I decided that the best way to deal with this situation was to help my family out in any way I could. I helped set up a schedule for our friends to prepare dinner for us while my mom was going through chemo. I also started speaking to my friends about it, but none of them went through the same thing I was going through. Continue reading

Sliced Open

Amy Reichbach is back on the blog with a poem she wrote. It was inspired by Alicia Ostriker. 

1076990_10151539621431538_1290151235_oSpooned it off and away,
nipple and all this time,
last time the odds said
the articles said
the surgeon said
Lumpectomy
the breast so big anyway
we could go in again
and no one would know.

Until
day of surgery mammogram
a technicality
until someone
called over
someone else
and they found more
we’ll try anyway
with one site, maybe two
cut away those cells
layer upon layer
learn how many more
lay in wait.

The call the next week:
good news and bad
two nodes
the spread contained:
I can breathe
those cells have not
seeped through blood
to capture all of me.
Probably.

But those spots
the ones the first mammogram missed
meant losing the breast
I’d held her to
for more than two years.

Such a hard start
we fought, my daughter and I
I believed mothering
meant feeding by breast,
only by breast
and mine certainly should work
given their ample size
passing an early test of motherhood,
I thought love
protected the breast.

Maybe it was brought on
by end of love
cells bursting
through anger, betrayal, shock
after fourteen years, an affair
end of love
why had I picked you
to cut me, sliced open
you didn’t mince words
when you left.

I had already become a statistic
one more of those who would divorce
following a seven year itch
you needed to scratch
within a decade of gaining the right
to marry.

In our home now
my daughter
notices the noises
people in and out
trying to cover over
fill in
the imprint of my wife
while in her other home
she notes the quiet
her other mother,
her young lover
and their demons
her only company.

And so I grade papers,
I listen to wind,
the empty echoes
and try not to
get stuck in the spaces.
Divorce. Cancer.
You never think it will happen to you,
what happens every day to other women.

Cancer and Sex

Don S. Dizon, MD, FACP, regularly blogs on ASCO Connection, where this post originally appeared. Learn more about sex and intimacy after a breast cancer diagnosis during our Twitter Chat, Tweets from the Sheets, on Wednesday, June 24.

dizon_don 2012As an oncologist who also runs a sexual health clinic for women treated (or under treatment), I am discovering that my perspective on both issues of cancer treatment (and survival) and life after cancer (and quality of life) is somewhat unique. I am conscious of how difficult it is to bring up cancer therapy and survivorship (let alone sexual health) within the same discussion, yet I have gained a heightened sensitivity of the importance of looking beyond treatment even while we are discussing what to do now. I have benefitted greatly from colleagues in the field of sexual health, such as Michael Krychman, at UC Irvine, and Anne Katz, in Canada, both of whom I have been privileged enough to count as colleagues, co-authors, and contemporaries.

I am even more fortunate that one of my friends here in Boston also shares my interest in women’s health. Sandy Falk is a gynecologist and sees cancer survivors for women’s health issues at the Dana Farber Cancer Institute. In our practices, we both see the adverse effects of therapy that patients have to cope with. However, far from the arthralgias of aromatase inhibitors and neuropathy of some of our chemotherapeutic agents (two symptoms which we as oncologists are comfortable discussing), sexual health is often compromised.

There are common complaints encountered by those of us who cover sexual health. They include:

  • “I’m done with treatment, but now I can’t have sex. It is too painful and my sexual desire is completely gone.”
  • “Why didn’t my oncologist warn me about this? Maybe if I had known my partner and I could have worked on this early on. But now, so much time has passed now and my partner and I have lost patience.”
  • “I’m not sure how to go on with my relationship.”

Those may be extreme examples, and I hope for most oncologists that they are. However, what I do know is that these perceptions do exist—inside and outside of medicine. When the paper on AI treatment was picked up by several sites, I had read some comments posted and was disheartened to see that some of the thoughts above were reflected: “A woman should be lucky to be alive,” one stated; another said, “You can’t have sex if you’re dead.”

I believe most oncologists do not discuss sexual health with their patients and as an oncologist, I understand why. Most clinicians reading this might think (perhaps unconsciously) that the patient is “lucky to be alive.” And of course, she is. And we also know that she probably wouldn’t have had the ability to hear detailed information about sexual health during the diagnosis and treatment planning process—there were much bigger priorities then. Continue reading