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!