Pictures with Meddies

"The phoenix hope, can wing her way through the desert skies, and still defying fortune's spite; revive from ashes and rise." 

- Miguel de Cervantes Saavedra

I was introduced to the term Meddie late one night after a long day at the hospital and a very scary cancer diagnosis.  I drove home from the hospital, vomited, made a million promises to myself and emailed the online Thyca support group for people with Medullary thyroid cancer.  There, I vented and spilled my details to complete strangers.  Those strangers called themselves Meddies and they are the people who carried me through that very difficult night.  I can never forget that.

The thing about Meddies is that we're given something in life that kicks us really hard in the heart every so often and it usually happens when we least expect it.   Our disease never truly leaves our bodies or ourselves.  We're trying to keep up with our normal  lives and  a chronic cancer condition, but balancing tumors and scans with holidays and dinner every night can really slap you silly  sometimes.  We live very abnormal normal lives and finding people in our everyday world that can digest the unpredictable details isn't always easy.  Meddies are some of the only people who have taken my road.  They get it.  I turn to them with the heavy stuff.

The other thing about Meddies is that we don't accept what some would label as incurable.  We live our lives with cancer tucked away inside of our thoughts, but keep our hope afloat.  We lend each other advice, advocate and write letters to the FDA.  We run ride and hold fundraisers, relay and stay involved and informed when it comes to treatment.  We educate ourselves and each other.  We share our successes and our sadness.  We come from every part of the Earth, but we're all in the same place.  We all want the same thing.  A cure.  Life.  

I have had the opportunity to meet several members of my Meddie family in person over the past three years.  It's always like running into a good friend and I almost always make sure we have our picture taken together.  I love our pictures because I think our togetherness and tenacity shine through in each and every one of them.

I love my Meddie family and While I wish with every piece of myself that we didn't have to  be a Meddie family, I'm so grateful for them.  I know that together we are leaving a large footprint on this earth.  I know that we're impacting the Medullary community, the cancer community and the world in ways we could not have anticipated.  And I know that this world's going to be better off because we were a part of it.  Our hope lies within ourselves and we all know that. 

Bloggers from CTCA Blogger Summit 2012

CTCA Blogger Summit in review
Cancer Treatment Centers of America: http://www.cancercenter.com/

Rob: http://www.robcares.com/ - Excellent resource for caregivers
Robyn: http://www.cancerhawk.com/ - Your one stop shop for cancer resources
Alex: http://www.theworldaccordingtoalexandra.com/ - The funny side of cancer
Reagan: http://www.thecancerdocuments.blogspot.com/ - Kicking colon mAss and taking names
Diane: http://doublewhammied.com/ - The witty, real deal on living with cancer

CTCA Blogger Summit 2012

If you wanna build your love up, put your hate down
Ooh, that's the only way to live

Turnin' negatives to positives
Chris Rene, Young Homie2012

This past weekend a group of bloggers including myself were flown out to the Cancer Treatment Centers of America's Western Regional Medical Facility in Goodyear, AZ. Our group of survivors and caregivers varied in age and tumor/cancer experiences, but one thing we all shared in common was skepticism about how different Cancer Treatment Centers of America (CTCA) could really be. Although CTCA has facilities popping up all over the map in places like Illinois, Pennsylvania, Oklahoma, and Arizona, I had actually never heard of them until this summit, and I wasn’t the only one. We bloggers spent a few days learning about what CTCA, hearing from patients and professionals involved with CTCA, and decided for ourselves what CTCA had to offer.

CTCA prides itself on treating the person with the cancer, not just the cancer. Employees at CTCA are referred to as stakeholders, because each person working for CTCA has a stake in the lives of the patients and is involved in patients’ treatment one way or another. CTCA operates as an all digital cancer treatment center, which translates into patients getting faster results with fewer errors along the way. “Whole-body” treatment is the most outright difference between CTCA and other treatment centers; CTCA offers nutrition, naturopathic and mental health specialists as a part of the patient’s “team,” instead of just focusing on killing cancer. A care manager, who is typically an oncology nurse, quarterbacks the team of doctors and specialists for the patient, and the patient has overarching leadership in their treatment process. This team works together to figure out what they can do for the patient, rather than what they can do to the patient.

CTCA puts a HUGE emphasis on nutrition, and rightfully so. Maintaining weight and paying attention to diet is critical for patients in the midst of battling the chemo monster. The chefs at CTCA make it easy for patients to find a way to start eating regularity again through their determination to find out what fits best for each patient, whether that food is a personalized smoothie or a healthier rendition of mac n’ cheese. Imagine that, individualized care. The food at CTCA was both nutritious and delicious, but the healthy buzz wore off Sunday morning when I had Sonic for lunch though..hehe.

Notable facility attributes:The library upstairs was full of cancer patient and caregiver literature for any cancer or concern you could think of. I took full advantage of these materials and brought quite a bundle back home. There is also a pharmacy on the first floor of the facility, making running an errand to fill a script one less thing for patients to worry about. The lodging for patients and family members were beautiful as well, and looked more like hotel suites than hospital rooms. CTCA was designed so that patients would feel at home, and I think their most effective implementation of minimizing the dreaded “hospital feel” is **the absence of an intercom system**. Patients don't have to worry about hearing a doctor paged at 3am when they're trying to sleep.

Strengths of CTCA based off of quotes from the patient panel:
TIME: "Time is your enemy if you have cancer" – So true. You lose time when you're trying to coordinate all of your appointments in different locations. CTCA can cut down on wasted time spent in hospitals and running across town to appointments at numerous locations. CTCA is your one stop shop for surgery, chemo, radiation, nutrition, therapy, and rehab. Patients even save time on their visits by checking in on their car ride to CTCA from the airport, that way treatment can commence as soon as they walk in the door.

CONFIDENCE: "It would not enter my mind to go anywhere else now. It's not even an option" – When patients are that confident in their treatment center, you know CTCA must be doing something right. Panelists talked about how their experience was so positive at CTCA that they didn’t want to leave after their treatment was over.

UNITY: “We are family” - Patient empowering programs like Cancer Fighters led by giant teddy bears like a man named Blas that I met make sure that patients are connected one-on-one with mentors. These mentors typically have beat the same cancer or are able to discuss similar treatments and interests. By keeping patients connected, whether they’re in the beginning or final stages of treatment, patients are reminded and reassured that they are not alone.

General downsides to CTCA:
INSURANCE: CTCA does not treat patients with Medicare/Medicaid, which poses a serious problem to young adult patients who are diagnosed without health insurance.

(possibly) TRAVEL: Although CTCA pays to fly their patients cross country for treatment, boarding an airplane every other week could be taxing for patients in the midst of treatment. I think it’s up to the patient to determine if the doctors and standard of care are worth the trip.

As the summit wrapped up Saturday afternoon and I took in the stories that the panel of caregivers and survivors shared, my heart swelled. The stories connected everyone in the room because we all “got it.” We all understood how tumors/cancer disrupts your life and how scary a diagnosis can seem. The panel testified to the light that’s starting to emerge for tumor/cancer patients in the healthcare because of CTCA; CTCA is “built on hope,” and I left CTCA with the hope that one day all patients will be treated with the utmost compassion, dignity, and respect, regardless of where they receive care. My biggest takeaway from Cancer Treatment Centers of America’s Blogger Summit is the realization of how flawed other treatment centers are without a holistic approach to treating cancer patients’ needs.

Stay tuned for a video talking about the mAss Kickers that I met in AZ!

"Pack the Place", San Diego

San Diego, California  USA  On March 21 2012, mAss Kickers Foundation hosted the 1st "Pack the Place" FUN-raiser at Bootlegger in downtown San Diego under the leadership of Amanda James, Lindsay Hawley of LMH Promotions, and Lilly Ghahremani of Lucky 13 Strategies.  The purpose of the event was to bring everyone together to put up a strong front against ALL TUMORS!  Represented at the event were numerous family and friends, representatives from Stupid Cancer - San Diego, Relay For Life - San Diego, Leukemia and Lymphoma Society - San Diego, and many leaders in the local San Diego Community.  

The event was fueled by generous "in-kind" donations for the raffle from:  Car2Go, Core Power Yoga, Fit Athletic, Undisputed Gym, Downtown San Diego, Rubicon Deli, Bootlegger, LS Skincare.

The majority of the funds raised will benefit local mAss Kickers Foundation San Diego Events!  There is a Charity Kickball Tournament planned in May, a Patient Research Education Seminar planned in July, and an International TUMORS SUCK Day event planned in October.

Thank you for your continued support of mAss Kickers Foundation.  Please keep an eye on us!  We have some exciting things planned the rest of the year!  

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