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

I Think I Deserve Something Beautiful

"I think I deserve something beautiful.”

― Elizabeth Gilbert, Eat, Pray, Love

I can't say that the instant I heard that I had cancer everything changed immediately. I can't say that all the sudden I had this wonderful insight on what the meaning of life really was. I can't say that everything around me made sense instantly. And I definitely can't say that I have it all figured out. Cancer doesn't create this omniscient, altruistic version of a person. It did the opposite to me. It broke me down into pieces, stripped me of so much of myself that I felt naked. Cancer showed me who Becky was. It told me what she was most afraid of, demonstrated her weaknesses and told me the story of her life. It showed me what Becky wanted and needed to be and made the draining people in her life stand out. Cancer woke me up.

The first thing I did after I found out I had cancer was go home and vomit. That's the very first thing. When the vomiting commenced and the tears stopped, I washed my face, looked at myself in the bathroom mirror and told myself that I had to find a way to quit my job. And I did. My work relationships at the time were shaky to say the least. My values differed greatly from my employer and things weren't working out. I was miserable. Every day. I'm not one for quitting, but cutting all ties to my work relationships at the time was essential to my well being. Cancer gave me the guts.

The second thing I did after I found out I had cancer was tell everyone that I knew. Not only did I call everyone I knew, I posted it on Facebook, I sent an email out to friends and family and I looked for every possible support group or organization that I could find to help me. Some people prefer to deal with a cancer diagnosis privately. I chose not to do that. I was desperate. And scared. Some people jumped in the mix quickly, asking if they could help or if I needed anything. Some people steered clear of me, not knowing what to say and then sent me emails saying that they didn't know what to say. I appreciated their honesty. No matter what a person's approach to my cancer was, they meant well and I knew this. It's a good feeling knowing that even though some relationships don't last I have lots of lifelong friendships that have and always will. Those people stuck by me. I'm so grateful for those relationships. Cancer can't take those away from me.

Here's the difference between my relationships before cancer and my relationships post cancer. Some of my relationships were wonderful chapters in my book of life. Those relationships are now more meaningful. and I enjoy adding pages to those chapters. Other relationships were nothing more than draining drags. Now those relationships no longer exist. I tore those entire chapters out of my book. I cut ties with people. Lots of them. Even people that I had known for my entire life. Today, I try to share my world with anyone that wants to listen and in the process I have developed some incredible, lasting friendships. Have I mentioned how much I love other survivors? The new friendships that I continue to build day by day are healthier than ever and I;m learning and growing with them. That's what happens when you open up your universe. Good people come along. Cancer taught me that.

I don't ever want to be in a position where I'm looking back at my life and wondering how or why I ended up in that very moment. I don't want to look in the rearview mirror and see a bunch of negative influences. I'm always setting new goals and testing my limits as a human being. I want relationships with people that do and believe in the same. I owe that much to myself. I owe that much to my relationship with myself.

Affects of Tumors/Cancer on High School Relationships

Visions of grandeur,
Rolling across state lines,
Midnight fits for exit,
Navy skies, perfect time

Outasight, Catch Me If You CanFurther EP, 2010

Having a brain tumor has created some awkward situations for me in the dating department, but nothing serious. My biggest concerns when dating someone have always been when to introduce the medical aspect of my life and how much to disclose. Luckily, having a tumor/cancer doesn’t pose as much of a deal breaker for high school students in relationships. Generally speaking, high school students don’t really think about tumor/cancer related topics. It’s pretty safe to say that high school students know someone or at least know “someone who knows someone” who is affected by cancer, but most high school students aren’t concerned with cancer because teens with tumors/cancer don’t appear to be very prevalent to the general public.

The most frustrating situation is when it comes to being out at a party or on a date and not being able to "stay up late" or stay out past 10:30-ish pm. If I don’t get enough sleep, it’s fairly likely that I’ll have some sort of a headache or seizure the next day. Most people describe me as “chill,” but from the Keppra I’m more than likely just really tired. It’s not very fun to always have to be the first person to leave, but I try to start my nights earlier, that way when they end earlier they’ve lasted longer.

I find myself rummaging through my backpack or purse looking for a something and pulling out a bottle or bag of pills and having to explain why I carry them around with me on a weekly basis hahah. I usually forget to turn off the 5:30pm Keppra alarm on my phone while in the movies too, which leads to apologizing for leaving my phone on, usually later leading to explaining why I have an alarm set for 5:30pm in the first place. Besides those two common situations and sleep stipulations, I’m lucky to say that my medical history doesn’t impact my dating life that much.

I wrote a guest blog for the Children’s Brain Tumor Foundation earlier this month that gives advice geared towards the high school/college aged dating thrivers out there..check it out!

How has cancer positively or negatively affected your relationships?

I’m glad February is the shortest month of the year.  February is associated with my least favorite Hallmark Holiday, Valentine’s Day.  Before my brain tumor diagnosis, I was a pretty active guy.  You would rarely catch me at home, however, I was more into “hanging out” with girls rather than “dating.”  I never liked labels.  I had just gotten out of a 7-year relationship when I moved to San Diego, and I was in a new and exciting city as a young professional fresh out of physical therapy school. I’ll admit I was having a lot of fun!  When I got diagnosed, all my close friends and family were back home in Michigan.  I made plenty of friends when I moved out to San Diego, but the friends that stood by me during my recovery were something else.  They became my San Diego family.  For that, I’ll forever be grateful!  I decided to stay in San Diego because most of my friends in Ann Arbor, MI were gone.  I would have had to move back home with my parents if I didn't have insurance, but I decided that I should stay in San Diego to take advantage of all the rehab opportunities here in San Diego.  My parents decided to split time to be with me in San Diego and Michigan, which ultimately lead to their divorce.  The tension in their relationship had been building for years. Their decision to get a divorce was shocking but not surprising.  I’m still very close with both parents, and I don’t hold ill will towards either of them.  I’m glad they finally did it for both their sakes. For my brother and me, the divorce was much easier to handle as adults rather than kids.  I sincerely hope they are both happier now!

As for my current relationship status, I have no time to date.  My priorities are:

•   My personal rehab
•   mAss Kickers Foundation
•   Traveling
•   My hobbies: sports, reading/writing, movies/videos
•    My family’s/friend’s well being
•  My Spirituality 
•  Hanging out/relaxing

This doesn’t leave much room for an active dating life.  HAHAHA!  Couple the above priorities with post treatment fatigue issues = no dating scene for me!  Relationships are just another thing that I don’t want to waste my energy worrying about.  I don’t have the energy to deal with added drama in my life because my plate is already full!  I’m not sure other survivors/thrivers feel the same.  It will be interesting to read everyone’s thoughts.  I’m curious to get their take on relationships. 

"You will begin to touch heaven, Jonathan, in the moment that you touch perfect speed. And that isn’t flying a thousand miles an hour, or a million, or flying at the speed of light. Because any number is a limit, and perfection doesn’t have limits. Perfect speed, my son, is being there.”

- Richard Bach (Jonathan Livingston Seagull)

I never stuck with a New Year's resolution. Never. And I don't think any of my resolutions have ever been authentic. At least not until 2011.

2011 was different. Completely different. That ball dropped and I knew the year ahead of me would take on a whole new meaning. I made several promises to myself and I planned on keeping each and every one of them. I deserved it.

On January 29, 2012, I fulfilled my biggest promise and it was amazing to say the very least. I crossed the finish line of the ING Miami marathon a little after noon. Outside, I smiled while mentally I crossed an item off of my bucket list. I do not have the right words to describe the feelings that moved with me across that finish line, but they left me in awe.

Miles 1-5 greeted me with a cloudy and imperfect, but incredible sunset. Mile 10.5 surrounded me with a sea of people: runners, spectators and costumed characters. Mile 20 beat the crap out of me. It was the most difficult for me by far. Mile 24 gave me a boost and I ran my best splits for the next two miles. Mile 26 was living. Speed did not matter. Neither did anything else in the world at the time. Not even cancer. Nothing else mattered. What mattered was that I was here. In this moment. Running. And finishing. Being here was perfect.

I never had the confidence to even try to complete a full marathon until a year ago. I'm glad that changed. At some points, it hurt like hell and all I wanted to do was stop. But I kept going. I remember the humidity settling onto my skin at mile 2 and how sticky it was. And I remember the sudden sense of good energy that seeped into my soul toward the end of the race as I realized that I was finishing. It was one of those rare life moments when good, hard work meets accomplishment and inspiration. Not only was it indescribable, it was unforgettable.