CTCA Blogger Conference Preview

Here’s a preview for my trip to Arizona tomorrow through Saturday during which I’ll represent MKF at the Cancer Treatment Center of America’s Blogger Conference!

My mAss Kickin’ Team

We're standing in a light that won't fade,Tomorrow's coming but this won't change,Cause some days stay gold forever.
The Wanted, Gold ForeverBattleground, 2011

Some of the roles on my mAss kicking team naturally formed – familial roles develop somewhere in the process early on. Other roles formed after I continuously sought advice or a place to express my concerns. I replaced a few doctors and stopped visiting a few hospitals, and now I have the right ones in my corner; not every doctor will take a personal interest in your case, and those who do are worth investing in. My mAss kicking team is comprised of friends and family who stick out the roller coaster ride that is mAss kicking, whether they know their roles or not.

Automatically drafted teammates: My sister, or sblot as many people call her, is always there to listen and reassure me that everything is going to be alright. My Dad, rblot, has a peaceful attitude that is perfect for mediating times of stress. My Mom, ablot, schedules most of my appointments and makes sure that my prescriptions are filled, both of which are necessities that I sometimes take for granted.

Those who stepped up to the plate:
My high school advisor always keeps things in perspective for me. If I have a test, whether medical or school related, she always calms me down. I rarely allow myself to admit to a headache or seizure as the excuse for a missing assignment, but sometimes she convinces me to cut myself some slack. The school nurse, and everyone’s second mother, provides me with never ending positivity and encouragement. These two faculty members don’t have to play the roles that they do, but they choose to; they show me the light of the world every day, and I am humbled by their wisdom.

The cheerleaders:
Three of my friends, Ajay, Caroline, and Puja, are probably the best support system I could ever ask for. Ajay and Puja are always smiling and laughing, and their silliness spreads like wildfire, putting everyone in a good mood. Puja is one of the sweetest and most compassionate people that I know, and I love that she’s always in the mood to brighten up someone’s day with a hug. I typically refer to Ajay as my ray of sunshine on a cloudy day or my better half; we spend a lot of time together, and whenever I’m stressed he boosts my mood with his jolly personality. Caroline has the ability to turn any situation into something hysterical, and I usually end up laughing so hard that she brings me to tears.

Designated teammates:
My high school tennis team – tennis was always a place where I could go to get away from my medical stress and fears. After having two severe back injuries in 2010 and surgery in 2011, watching my teammates play and seeing their passion out on the courts reminded me that I’d probably make it back out onto the court despite what some doctors said. I made a point of continuing to attend matches, take pictures, and cheer on teammates as we were regional and state champions in 2010, and regional and state runner-ups in 2011. Within the past few weeks I’ve made a strong push towards getting back on the court, and things are looking like I’ll actually be able to compete for a full season this year! On the court I’m not a patient, I’m just another player. On the court I control the outcome of events, not doctors or MRI machines! When they’re rooting for me in a relay race or a match what they’re really rooting for isn’t a win on the court, but a victory against the walls that mAss kickers have to knock down.

Teammates who developed by chance:
Erich Zeeb, who I previously blogged about, keeps me motivated. Erich and I met up for lunch in Ann Arbor a few weeks ago, and he told me that he has continued to stay in shape amidst his chemo treatments by swimming laps with buckets on both ends of the pool in case he needs to heave. Not that’s dedication. For the past year I recovered from back surgery, and had become a bit of a lazy slug. Erich’s determination to stay fit was a wakeup call for me..if Erich could find the inner drive to stay fit in the midst of chemo, then I could find the energy and make the time to get myself back in shape.
I can’t even put words to how many opportunities and resources Eric Galvez, the mastermind behind MKF, has provided me. My involvement with the mAss Kickers Foundation gave me a purpose in the beginning of my mAss kicking journey and made me realize that I wanted a career helping others. The rest of the MKF bloggers and advocates out there like Amanda, Kristen, Ligaya, Jennifer, Matt, etc. remind me that the future is not too unknown, and that there will be a mAss kicking support system out there for me at any age.

Ultimately, I think that friends are the best support system. After a long day in the hospital or a weekend full of tests, I just want to feel “normal.” Whether “normal” is going to tennis practice or sitting around a bonfire with a group of friends relaxing and laughing, I know that I’m not alone.

Meet. Connect. Inspire. Three words that Embody the 2012 Conference 4 Young Women Affected by Breast Cancer

It’s always an occasion when hundreds of breast cancer survivors and care partners come together for a conference and this year’s Conference for Young Women Affected by Breast Cancer [C4YW] was certainly no exception.

First, let me say that you shouldn’t let the “Young Women” fool you… women of all ages made the journey to New Orleans on February 24^th to share in the three days of education, enjoyment, networking and support. C4YW, presented every year by the Young Survival Coalition and Living Beyond Breast Cancer, is an event that some women look forward to all year long. They save up, raise funds, apply for travel grants and help their fellow survivors [at all levels of treatment] finance the trip. For many women, it is their only opportunity to travel throughout the year and it is the “vacation” that they look forward to.

Attendees were greeted in the registration area with the spirit of Mardi Gras that New Orleans is famous for! Bowls of colorful beads overflowed from oversized bowls that were much more than just decoration. Each had a special significance:

White: Diagnosis less than 1 year

Green: Diagnosis within 1-5 years

Orange: Diagnosis within 6-9 years

Pink: Diagnosis of 10 years, or more

Red: High Risk for Recurrence

Gold: Care Partners

Purple: Metastatic Disease

Blue: Healthcare Providers

The beads immediately opened doors for conversations, head nodding, thumbs-up and full-blown body hugs. They became much more than an accoutrement celebrating our time together in NOLA, but a road map of our common and varied journeys.

Adjacent to the Registration and Discussion Areas (marked with note card where folks could connect – from “long-term survivors,” to the “newly diagnosed] the exhibit hall was buzzing with sound and energy. Numerous amazing organizations were in attendance to connect, educate, empower and share support, information and SWAG. LiveSTRONG, National Breast Cancer Coalition, Pink Link, Stupid Cancer, Pink Fund, Keep Abreast, Caring Bridge, and many more were on the scene. Throughout the weekend, Dusty Showers walked the exhibit hall and spent time hugging survivors, answering questions and [of course] getting his photo taken!

As a representatives of mAss Kickers Foundation, I had the delightful opportunity to interview conference attendees. My fellow mAss Kickers [Gayle ‘Skip’ Wismar & Cindy ‘Scoop’ Gomez Sanchez] and I perused the area just outside the conference and talked with many amazing women about what brought them to the conference and what they were hoping to get out of their time at C4YW. Many were there because the continuing education and opportunity to share time with fellow survivors each year was life-altering. A number of newly diagnosed women shared their desire to learn about the path that other women had traveled and to create support networks. Exhibitors shared their passion for making a difference in the cancer community as well as sharing their personal stories of cancer. All were moving and poignant in their own way. We laughed. We cried. We hugged. We went to sessions…

The workshop and plenary offerings at C4YW were varied as to meet the needs of as many women and care partners as possible and to help attendees to address their own unique challenges faced as a young woman affected by breast cancer. Topics which are often ‘under-addressed’ such as “Lesbian Women: Communicating With Partners,” and “Reclaiming Your Sexual Mind & Body” were incredibly well attended, facilitated and received by engaged audiences. Both sessions were amazing.

Conference participants had a variety of workshops to choose from over the course of the weekend. Topics included meditation, social media, reconstruction options, genetics and family risk, various medical updates, lymphedema, communicating, end of life issues, and many more including special workshops for caregivers. Plenary sessions brought conference participants together to hear speakers on healthy living, intimacy, and a panel of patients and medical oncologists. A welcome reception on Friday evening brought everyone to the exhibit hall to browse and enjoy snacks. Afterward options included yoga and belly dancing not to mention amazing local food, historic sites and more zydeco, jazz, and southern hospitality than you can shake a stick at!

As always, the “Memory Wall” shared photos of those who have died and whom we carry with us in spirit… Rachel Cheetham Moro, Susan Niebur, Jolene Von Millanich, Stacy Tanchum, Olivia Coia, Keely Culter, Lynda Swaim, Katy Murphy Rees, Angela Martinez Medina, Pete Sudol, and so many others.

The wall serves as yet another tangible reminder of the work that we have ahead of us. To educate, advocate, and to fill the resource gaps for people living with a cancer diagnosis. To make a conference like this obsolete. To end breast cancer.

For those of you who were in attendance… take what you learned. Continue to make change in your daily life whether through active advocacy of calling legislators to discuss policies that affect the cancer community, or by ‘voting with your dollars’ and purchasing products free from estrogen-distruptors. It is easy to walk away from a conference of the magnitude of C4YW feeling like you want to bust the gate down and change the world… it can be just as easy to feel completely and utterly paralyzed by the about of information you’ve received, overwhelmed by emotions, and exhausted. Breathe deeply. Take a moment to reflect on what you learned, saw, shared, experienced and process. Choose your next step from that place.

If you weren’t able to be with us in person… YES! You WERE missed! Check the conference website for audio-recorded sessions on Young Survival Coalition’s website: http://www.youngsurvival.org/programs/connect/annual-conference/

Each day of the conference was a gift. I am especially grateful to Eric Galvez at mAss Kickers Foundation for affording me the opportunity to attend on the foundation’s behalf as a representative of mAss Kickers. Much love, and many thanks to Gayle Wismar & Cindy Gomez Sanchez “mAss Kicker Babes” extraordinaire.

Interested in checking out next year's C4YW? (You SHOULD be!] Mark your calendar for February 22-24, 2013, and plan to head west to the Hyatt Regency Bellevue on Seattle's Eastside.

Special thanks to Mara Gorden & Dusty Showers of the 2^nd Basemen. In addition to your open hearts, welcoming presence, & humor… I share my appreciation for the wonderful women that you brought to C4YW on travel scholarships. You afforded us the opportunity to meet them and for them to have an incredible experience.

Warm [and continual] thanks for the powerful work they do within the cancer community and beyond: Matthew Zachary, Kenny Kane, Joy Simha, Mara Gorden, Dusty Showers, Vicki Channing Tashman, Amanda Nixon, Stephanie Ritter and too many others to name. Thank you.

Lead Sponsor: Susan G. Komen for the Cure

Sponsors: Avon Foundation for Women, Eisai, Genentech, Amgen, Breast Cancer Wellness, Celegene, Oakley, Center for Restorative Breast Surgery, Cancer Treatment Centers of America, Genomic Health, Krewe of Muses, Lilly, LiveSTRONG, Lymphedivas, Myriad, Lockheed Martin Employee’s Foundation, Mentor, Paula A. Seidman Fund, Randi Rosenberg Memorial Fund, Veridex, & BJNB Foundation.

A little background on C4YW:

This conference is specifically designed for:

Young women affected by breast cancer

Long-term breast cancer survivors diagnosed before age 45

Caregivers, including partners, family and friends

Young women with a strong family history of breast cancer

This conference also brings awareness and invaluable information to the medical professionals fighting breast cancer, including:

Social workers, psychologists and psychosocial-oncology specialists

Oncology nurses and nurse practitioners

Breast cancer patient support organizations and advocates

Medical and radiation oncologists

Breast surgeons and reconstruction specialists

Reproductive endocrinologists and fertility specialists

Genetic counselors and geneticists

Physical therapists and rehabilitation specialists

Gynecologists and women's health practitioners

Tumors Suck! NewsFlash 3-11-12, Ann Arbor, MI