The blog where I play catch up...

The National Marathon: my first race! It was a huge personal accomplishment. As I’ve mentioned before, I was not running for time. My goal was to finish. And, ok, it wouldn’t have hurt to make a 12 minute mile.

I decided to do the race after I had been working at the UCF for a little over 3 months. It was the start of 2010 and one of my resolutions. I embarked on the journey without enthusiasm. I felt a certain obligation to sign up for a race because I am working at an organization with a brilliant athletic fundraising and training team, and it is also a step in the right direction to taking better care of myself.

Running is not my forte. I dredged my feet through the “Couch to 5k” training program starting with 1 minute running intervals. Gradually, by mid-March I had increased my stamina and was running for 30 minutes straight. I didn’t enjoy the process; each thud of my foot held the thoughts: “ow”, “I want to stop”, “how many more minutes”, “it wouldn’t be so bad to cut my jog short today...”. Yet at the conclusion of each run the feeling of pride (and soreness of using new muscles) was enough to motivate me to hop back on the treadmill or track for the next workout.

On Saturday March 20th I arrived at RFK stadium with my relay team members, Lindsay and Carrie. I was nervous. A trembling, heart racing type of nervousness that left me unable to eat my breakfast and made me hesitant I would be able to run without tripping.

Sarah (me), Carrie and Lindsay at 6:30am. GOOD MORNING!

In 2002 Carrie ran the National Marathon in memory of my sister, Honor Elizabeth. As the three of us met the other Team Fight members who would be running Carrie prepped me on what I could expect from the course. At the start line there was music and a buzzing, growing energy that was palpable. People were clapping and dancing as the sun was rising. We watched Lindsay, our first leg, take off and I knew it was time to put aside my fears. I was here, I was going to finish and I was going to try to enjoy it.

Two days before the race I met Amber. With Amber in my mind and my sister in my heart, I got myself to the second relay exchange point. Then I just had to wait. The exchange point was at the top of a hill.  I was able to look down (while trying to bounce out my nerves and stretch on the curb) to see the yellow Team Fight shirts as dots in the distance. The first group of Team Fighters passed and I cheered for them. 

Brock and Katrina at mile 10 of their half marathon and my relay exchange point.

It was fantastic. Everyone there wants you to succeed! People were shouting sentiments of encouragement and clapping. The positivity I felt that day I have rarely seen at other sporting events.  Finally, I spotted a yellow shirt and gray pants coming toward me and I knew I had to get in the zone. Carrie and I kissed on the check (no scrunchie\baton pass off for Team Slow and Steady) and I was off.

Because I tend to look down while I run (bad habit) compounded by my nerves, I didn’t have a clue where I was in the course. I missed every mile marker! There was a point where I started to get tired. REALLY tired. I didn’t want to walk, but the shin splints were there and they were real! This happened to be the time I was running parallel to the full marathoner's mile 13. All the sudden I see Team Fight members Katrina, then Danny, then Mike! It was so exciting to watch my friends and UCF supporters cheer me on I remembered the people I was running for. I remembered how unbelievably strong these people are and were. I pulled from their strength. I kept running.

Crossing the finish line that Saturday morning I felt a something melt. This layer of “I can’t” and “I’m scared” disappeared into, “I DID!”. I am very happy to have finished 3.1 miles in 31 minutes and 36 seconds!

Running the race wasn’t easy for me, but I found the time set aside with just my thoughts to be very rewarding.

Almost all of the Team Fight crew after their respective runs.

Since the race I sent out a request to our supporters for help with Amber. I am so grateful for the people who contacted me. Not only were the donations generous, the correspondences were also a true pleasure.

I was fortunate enough to be able to visit Amber at hospice (temporarily inpatient due to an infection) two weeks ago. We surprised her with a visit from Mimi’s favorite TV character, Dora the Explorer. If I thought I felt connected to Amber before this day, I was irreversibly changed watching her interact with her daughter. The dynamic between Richard, Mimi and Amber is absolutely delightful. Amber spoke Spanish to Mimi as her shock turned into joy when the giant television character materialized in her mother’s hospital room! The purpose of the visit was to bring Amber's family gifts, however I feel I was given a gift to be able to share some of what is left of Amber's time. 

Richard, Mimi and Dora!

Dora, Amber, Mimi and Richard.

Mimi showered in love!

Sarah Wainio
Volunteer Coordinator

The blog where we remember a mother and her impact...

Brock and the staff presenting Kayleen with the Marilyn Yetso scholarship check, 12/2009.

Growing up playing sports – from little league to college soccer – I always thought winning WAS everything.  Yeah, yeah…some coaches and your parents might say winning isn’t everything and “how you play the game” is equally important --- I never really bought it.  You see, I was a soccer player and goalkeeper at that, so at the end of a 90 minute game, if I gave up more goals than the opposing team, we lost!  As I moved along in life, I applied this “winning” philosophy to much of what I did and saw pretty decent success – both on the soccer field, in the classroom and in the business world….little did I know and would learn later, winning is NOT always everything and “how you play the game” is sometimes more important.  The way you play the game is what makes the people around you better and stronger and leads to longer lasting success.

So where am I going with this.  In March of 2000, my family and I faced the hardest opponent any of us had ever seen.  This opponent wasn’t an opposing striker, a difficult test or a high stakes meeting – this opponent was CANCER.  Cancer humbled me and turned my life upside down.  On the surface you’d probably say it won – but over the years I’ve learned it was far from winning and I’m still in the game FIGHTING right back!

On February 17, 2000 my mom was diagnosed with Stage IV Colorectal Cancer.  She was 57 years old at the time, had been a nurse for 20+ years and experienced no symptoms.  She was a loving wife and mother of 5 kids and living her life in a way people could only aspire to imitate.  Her youngest son was about to be the last of five to graduate from high school and her oldest daughter was a few months from getting married.  She had so much to live for and the world had so many reasons for her to live.  The PTA President, Soccer mom, community leader, health care professional and more – she lived a life of service and compassion for others. 

My mom’s cancer journey was a short one – from her diagnosis in the local ER she received immediate surgery followed by chemotherapy and radiation.  Unresponsive to any treatments, we to took her home from the hospital four weeks after her diagnosis on March 16, 2000 where she died peacefully in her home with her family by her side on March 17, 2000.

Today as I sit back and reflect on my mom’s life, her cancer fight and how it has impacted me and how I live my life, I go back to my initial thoughts I shared with you about winning, losing and life.  It has been 10 years this month that I sadly commemorate my mom’s passing to cancer but I’m also proudly celebrating a decade of fighting the disease that took her life.  In my eyes, cancer may have scored the first goal but we’re now in the second half and I’m fighting right back and winning!

Whether it is a soccer game or the fight against cancer, I’ve come to appreciate that over the years that winning is NOT always everything and my mom taught me that better than anyone.  My mom played the game of life in the most admirable way possible.  She played by the rules, lived life to its fullest, work hard and loved those around her.  For the 57 years she was here she left no regrets.  She raised a family and instilled values in those she touched that will live indefinitely.  Her battle with cancer was no different – she tackled it head on with respect, grace, determination and never let it invade her soul.  Cancer is a ruthless, uninvited, deceitful, rude, and cheating opponent but it is an opponent that can be beat over time.  It doesn’t follow any rules and it will continue to invade all of our lives.  It doesn’t care who you are, who you love or what you have to live for – it cheats and steals until it feels it has been victorious. 

What Cancer doesn’t know is for every person it goes up against, there is a team full of family and friends supporting that person that are ready and able to FIGHT back.  Although she is no longer physically with us, my mom is very much still in the fight.  She left behind a legacy of family and friends that will fight on.  She is most likely sitting back smiling now because cancer picked the wrong fight.

So what does this all mean for you and me?  The next time you embark on your next journey, competition, challenge – just give this some thought.  What does “winning” mean to you?  Is it the place you cross the finish line, the score of the game, your rank amongst the group?  Don’t get me wrong, how you perform has its place in this world and I’m the first person trying to win - BUT I can’t emphasize enough the importance of evaluating yourself and others on the how we “played the game”.  We’re not going to win or be successful in everything we do.  Persistence and perspective are so critically important.  Win, lose or draw – we need to be able to be proud of the performance we gave and be able to pick ourselves up, dust ourselves off and move on to the next challenge. 

The next time you “step up to the starting line” or walk into the board room, ask yourself:  Did I give 100%?  Was my effort part of a larger and longer lasting effort that will have greater change?  Did my individual efforts help impact others?  Am I proud of how I conducting myself?

Winning might be a great feeling for you temporarily – but is it ALSO changing the world around you?  As the cliché saying goes – “Make your mom proud”.  It’s all in how you FIGHT that really counts!

Brock Yetso and Kayleen Bailey

Brock Yetso

Executive Director

The blog where we remember a young poet...

Last week, I had the pleasure of reading a young poet's work, shared with me by his mother.

Brendan passed away on February 24th at the age of 20 from brain cancer. His book of poetry has been accepted for publication. It is available for purchase here.

I tried to think of a way to describe Brendan's words. The simple efficiency of a quote... his word choice. But, I realized his words speak most boldly for themselves.

Please enjoy:

A Leaf of Knowledge

I don’t know
what the doctor means by “mostly”
within the radiation field
I don’t know
for how long I will need this cane
I don’t know
what the scan will look like one month,
four months,
four years from now.

All I know is the air that I breathe in this instant--
spring's sweet whisper—
into my lungs,
my friend at my side,
his broad hand between my shoulder-blades,
the living G-d,
the love of my friends and family,
and the warm skin of her knee,
onto which I lay my cheek, to sleep.

Sarah Wainio

Volunteer Coordinator

The blog in which I ask for a little help from my friends...

It has been a while since I’ve blogged, but I plan on posting each Monday from now on. Look forward to it, put pressure on me! Call it a resolution.

A lot has happened over here at the UCF and some of it I will need to update you on in future posts. I DID complete my first race for Team Fight! It wasn’t pretty, but I’m proud. More on this later…

What has happened recently, which I think prevented me from being able to blog for a little while, was meeting Amber.

This was a sobering experience.

Amber is 22, concerned about her body image, her family and her relationship. A lot like me. We both graduated in 2005 from high school and enjoy a good horror movie. The difference between us, the difference that slapped me in the face when I stepped into her room, is that Amber has metastatic thyroid cancer. Amber’s cancer has taken over 75% of her body. She is a prisoner to it and she is a prisoner to her bed.

Amber is concerned about her body image because the drugs she is taking to control her pain and pro-long her life make her incredibly bloated. Amber is concerned about what will happen to her precious 2-year-old Mimi when she is no longer around. This is where we are different. This is also when my heart swells for Amber in a way that is indescribable until you meet a 22 year old who doesn’t have much longer on this Earth.

Amber came home from Seasons Hospice & Palliative Care not very long ago. She wanted to spend the remainder of her time with her daughter, something she couldn’t do in the facility.

Watching Amber and her boyfriend, Richard show me a slide show of the three of them on a silly, regular night, with Motown music as the soundtrack did two things. First, I was deeply impressed by the commitment that was so clear in this young couple. It is difficult being in a relationship as a young adult, but even more challenging with a child AND cancer. Second, I wanted to be Amber’s friend. I realized that although in a basic way, in a way that felt crushing and overwhelming we are inescapably different: Amber is sick and I am well. But in other ways I felt so connected to her. We both like silly TV drama series, horror movie and anything that isn’t being confined to a bed. Maybe it was our personalities? Maybe we are just uniquely bonded in a way that young women are?

I wondered what I could do to help Amber. I can’t make her better and I certainly can’t pro-long her life. I can’t really help Mimi to know her mom, who I don’t even know very well yet. But, what I can do it try to create a little more happiness for mother and daughter while they have time left together. It certainly isn’t much, but it is something. So, the UCF and I are asking for help. Small specific things we have found out from Amber and her mother, Dawn, that would be helpful to her. Things that will improve the quality of her life. If you are interested in donating something for Amber or Mimi, please call Sarah at 410-964-0202 ext 109 (during the 9-5 business day) or e-mail sarah@ulmanfund.org.

Richard and Amber the day we visited. 

Sarah Wainio

Volunteer Coordinator

Kelly's Story

   At the age of 22 I was diagnosed with a malignant brain tumor called Medulloblastoma.  I’m proud to say that I’m a 5 ½ year survivor who has achieved every milestone doctors have set for me…and then some!

   May 18^th, 2003.  After being misdiagnosed three times with everything from a sinus infection to TMJ, I was sent to a pain management specialist for trigger point injections to the back of my head.  I’d been having extreme pain and dizziness for about six weeks and the symptoms were intensifying with every passing day.  A few hours after the trigger point injections, the dizziness became unbearable and I began vomiting.  I phoned the on-call doctor who, after some persuading, sent me for an MRI.  It was about 5:00 on a Friday night.  After the scan, the tech told me I needed to see a doctor upstairs, but did not tell me why.  The doctor was the only person left in the office on that Friday evening.  He looked at my scan and said, “We’re going to have to take that tumor out!”  WHAT?!  I’d been questioning doctors for six weeks about a possible brain tumor and every time I asked I was told that couldn’t possibly be the problem.  The Neurosurgeon said he didn’t believe the tumor to be malignant, but it was large and I would require surgery within the next couple of days.  He sent me to Washington Hospital Center immediately to be admitted for brain surgery.  I was given pain medicine late Friday evening and remember very little from the time I checked in to the time I went into surgery very early Sunday morning.  I remember waiting outside of the operating room dizzy, dazed and scared when I recognized a familiar voice.  She was the nurse anesthetist who happened to be a family friend that I hadn’t seen in almost ten years.   After telling her who I was and having a short conversation, I knew everything was going to be fine.

   May 21^st, 2003 I had a 7 ½ hour brain surgery where my neurosurgeon, Dr. Zachary Levine, miraculously removed the entire orange-sized tumor that had been growing in my Cerebellum.  He was confident there was a less than 5% chance of it being malignant.  I was in ICU for two weeks with a tube coming out of my head draining the spinal fluid that had built up on my brain.  About ten days into my two week stay my life changed forever.  Dr. Levine came into my room with the pathology results from my brain tumor.    I had CANCER.  Dr. Levine explained to me that this type of cancer is very rare in adults since it is mostly found in young boys ages 3-9.  He felt I would receive the best treatment if I was followed by a world renowned Pediatric Neurologist at Children’s National Medical Center in Washington, D.C.  Scared, confused and in tears, I decided that I was going to fight this with every fiber of my being.  

   My husband and I had only been married about 18 months and we had just bought a new house north of Baltimore.  I was given a treatment plan of six weeks radiation to the brain and spine, which was to begin immediately and to be followed by chemotherapy.  All of this was to take place in Washington, D.C.  My husband, family and I had planned a trip to our favorite spot on the Outer Banks months prior to my diagnosis and were very lucky to be able to escape for a few days before my treatment began.  After our few days away, my family very lovingly welcomed me back home and took wonderful care of me.  I had radiation markings on my back that couldn’t be washed off, so my mom helped me bathe.  Radiation caused my hair to fall out and my mom would wash my bald head for me because I just couldn’t bear to touch it.  My dad and sisters drove me back and forth to my daily radiation treatments allowing my husband, Paul, to keep his new job.     

   Every week day for six weeks I received cranial/spinal radiation.  I laid on my stomach with my head clamped into a torturous “mask” to receive my treatment.  Treatment itself only lasted about a minute, but the entire process took about ten very long minutes.   The spinal radiation made me extremely sick and I was nauseas and vomiting through the entire six weeks.  I had no appetite and was barely able to eat.  To top it all off, three weeks into radiation (on one of the rare trips I was able to go home to spend the weekend with my husband) I was diagnosed with appendicitis which required surgery to remove my appendix.  Because I was unable to lie on my stomach, this pushed my radiation treatments back one week.  This sent my doctor’s into a tailspin because you aren’t supposed to break-up radiation for anything. 

   August 23^rd, 2003 I completed my radiation treatment.  Although I was to begin Chemo at this point, it was determined after an unsuccessful “cocktail” of chemo.  during radiation that physically my body could not handle the chemo.   Doctors had informed me at the beginning of treatment that there was no conclusive evidence that chemotherapy did anything to prevent this type of tumor from returning.  My doctors and I determined this was not a good choice for me.   

Today I am a happy, healthy 28 year old.  I’m extremely proud to call myself a cancer survivor and fully expect to live a long, prosperous, exciting life.  Radiation therapy has left me with some lifelong physical “scars”, but I’ve learned to work with them and my life continues in spite of them.  I have permanent digestive problems from spinal radiation, but I’m on a daily medication regiment that helps a lot.  I’m missing some of my hair on the back of my head.  Even though it’s a cosmetic problem, I truly miss having all of my hair.    A few years ago I was told a top John’s Hopkins fertility specialist in Baltimore, MD that my ovaries had been damaged by radiation and I had no viable eggs left; therefore, I would not be able to have children.  I never believed this and continued, in faith, to believe I would eventually become pregnant.  I always knew I was meant to be a mom.  2 ½ years ago I gave birth to a healthy baby boy and I am currently 6 months pregnant with baby #2.  While my pregnancies have been healthy, they are not without challenges, specifically severe reflux.  It’s a daily struggle to combat the pain and discomfort of severe reflux because of the damage done by radiation to the lining of my esophagus and stomach.  The other side effect of the brain surgery is that my pregnancies have to be delivered by c-section.  In my case I am a firm believer that the combination of optimism and faith prevailed over negative predictions I had been given by doctors.

   I am proud to be 5 ½ year brain cancer survivor.  My goal as a survivor is to share with other young adult cancer patients and survivors that there can be a positive outcome after treatment with lots of living to be had in the future.  I was blessed with wonderful doctors and a tremendous support team of family and friends and look forward to a bright future with my growing family.

Kelly Ruszala
Volunteer and Cancer Survivor