The UCF Blog has MOVED!

You can now find the UCF blog on HERE!

Welcome, Ashley Portrey!

The Ulman Cancer Fund for Young Adults has a long history with Volunteer Maryland whose mission is to build stronger and healthier communities by empowering Marylanders to take action. The UCF received it's first Volunteer Maryland Coordinator in 2002. Ashley will be working on the Peer Mentor Program, University Outreach and creating Ambassadors of the UCF in Baltimore. Now, we welcome Ashley Portrey to our team. Here is a little bit more about Ashley, in her own words...

"I am a graduate of Shepherd University with a BA in psychology. I am currently in a Masters program at Hood College. I am studying Thanatology, which is the study of death dying and bereavement counseling. Specifically, I want to use my degree as a way to help those going through times of bereavement. I want to help those who are faced with a harsh diagnosis to those individuals who are at the end of their fight. I want to be a support to the family members as well.  I came to UCF because the mission is something very close to my heart. I am very aware of what cancer can do to a person and to a family. People need support, they need education, and they need to be connected with others who are going through the same fight. My family has been riddled with cancer. My grandfather died of lung cancer, two of my aunts and one cousin died of breast cancer, one of my best friends died at 22 with stomach cancer, and my mom is a two time survivor of cervical cancer and melanoma.  I am a cancer survivor. I was diagnosed with ovarian cancer when I was 23 years old. I was given amazing support from my family but I would have loved to have known about UCF. I know that educating the community about cancer in young adults is important. I am very excited to begin my year with UCF."

Baltimore Running Festival 2010

As the office tries to regain balance after the excitement of Half Full, the final Team Fight event of the season is also sneaking up on us. There will be a whopping 53 Team Fight members participating in The Baltimore Running Festival; 21 of them competing in the half marathon.

Something unique about the Baltimore Running Festival, as an Ulman Cancer Fund event, will be the presence of the Cancer to 5K Program.  Baltimore Running Festival is the culmination of the 12-week training program.  There will be 14 Cancer to 5K champions completing their end goal of the program: a 5K. Because of a partnership with Mady & Mules the UCF was able to bring the Cancer to 5K program to Howard County for the first time.

There is a sense of deep, deep pride affiliated with the Cancer to 5K Program unlike any other. Being witness to the physical success of these individuals can be very emotional. Cancer to 5K is about completing a race, but most important it is about regaining strength and power. The camaraderie of the group is like the bond of a new family.

   

In the lingering energy and spirit of Half Full, I encourage all participants and spectators to take photos, videos and capture comments of your experience on race day! What makes you Half Full? Share your story with us at: http://www.halffulltri.r2ismash.com/

I’m wishing all the Cancer to 5K crew a wonderful race. I can’t wait to cheer you on…

Sarah Wainio

Program Coordinator, Mission Engagement

What Half Full Means to the Ulman Cancer Fund for Young Adults

Just days after the inaugural Half Full Triathlon and I'm still overcome with emotion from the overwhelming amount of support I witnessed from volunteers, sponsors, spectators and participants. To everyone involved with making this event a success and being a part of our Half Full movement - THANK YOU! To all the athletes that participated in the event - congratulations! Half Full was a success for the Ulman Cancer Fund for Young Adults for many reasons. Some of the ones that stuck out to me were:

• The events ability to bring people together over a weekend to talk about cancer and the unique needs of young adults
• Peoples willingness to share stories about how they've been touched by cancer
• Successfully creating a platform in our community to promote health and wellness, offer support and reinforce the importance of hope in the face of cancer.
• An event where cancer survivors can be recognized for what they CAN do!

Yes, we also raised funds that are critical to sustaining and enhancing our programs for young adults and families facing cancer, like patient navigation, college scholarships and peer support, but I'm just personally blown away by the impact we can have as a community when we simply come together and take a half full approach to fighting this disease.

Half Full began as a vision some 18 months ago, between a small group of people. It has grown to include all of YOU. Half Full was truly an effort of the masses and the numbers behind the field tell the story...

• 1000+ participants
• 500+ volunteers
• 100+ county law enforcement and emergency service professionals
• 100 cancer survivors participating
• 400+ athletes participating in honor or memory of someone
• 100+ relay teams
• 130+ first time triathletes
• Athletes from 28 different states: 680 people from Maryland, 4 from California, 20 from Washington DC. Athletes from New York, New Jersey, North Carolina,Utah, Nebraska, Connecticut, Virginia, and Maine!

                        Brock Yetso with Aaron Lyss, first cancer survivor finisher and Brian Satola.

As we close the the door on the 2010 Half Full Triathlon we open up the door to the boundless opportunity of 2011 and beyond. Half Full may have started as a 70 mile triathlon, but I'm getting the feeling it's a lot more than that to many people. So buckle up folks and hang on - the Ulman Cancer Fund for Yuong Adults is excited to keep this bus moving and we're hopeful you will stick around and recruit more family and friends to join us!

Brock Yetso
Executive Director

In addition, I would like to share a blog written by Nicole Kelleher, 2010 NCAA Triathlon Champion and the Ulman Cancer Fund for Young Adults Scholarship Recipient:

This weekend I had the honor of participating in truly the most special event I have ever taken part in. The inaugural Half Full Triathlon drew over a 1000 participants and 400 volunteers (do the ratio on that!) this past Sunday in Columbia Maryland to raise support and awareness for young adults battling cancer. I can guarantee that there has never been a more impressive inaugural event. Headlining the event were Rebecca and Laurel Wassner (the only pro triathlete who has beaten cancer) as well as Eric Shanteau (also a cancer survivor, 2008 Olympian and American Record Holder in the 200m breast stroke) and Doug Ulman (the CEO of Livestrong). This event was run by the Ulman Cancer Fund, a young adult alliance organization with Livestrong, and 100% of race registration went directly to their cause of advocating for and supporting the largely marginalized and under-served population of cancer patients that are young adults in this country.



The Triathlon itself cannot be captured through words on paper. From the incredible major media coverage, the nicest most helpful volunteers on the planet!, amazing gift bag, impressive expo, free Chipotle, free McDonalds, free lace locks, Oakley raffles ect, ect ,ect It had EVERYTHING and even more that you would find at the largest, most well-know triathlon in the country. This event has obviously inspired major support from all directions. This is going to be a HUGE event in the future and an important movement in the triathlon world. The distance was a 70 mile race with a .9mile swim, 56 mile bike and 13.1 run. The distance is significant in that it represents the 70,000 young adults diagnosed with cancer in the US each year. What I really want to talk about is exactly what that means at this race and why this race is different.


I woke up Sunday morning looking forward to helping my relay team with the swim portion of the race, but I was mostly excited because I knew I was about to witness triathlon in a new light. I was right about that. The swim was gorgeous, pancake flat, smooth water. And our relay team won the relay division as well as had the fastest overall time of the day- owing not at all to my swim but by an insane 1:17 half marathon by James Linville and an impressive bike by Scott McAims. And 3 of the top 5 relay teams were from UVA (out of 100 relays!). So UVA had an incredible day. But what was different about the race had nothing to do with the performances of just that day.


Standing at the finish line I witnessed cancer survivor after cancer survivor cross under the large finishing banner, past the photographers, announcers and TV cameras. Most of them would stumble a little after the line as they dropped their faces into their hands and started to weep. These were often very young people. And even more often, these were people that had never done a triathlon before and now had just completed a 70 mile race after battling cancer. Could they have ever imagined being in the finishers ring of such an event the months or years before when they sat in a stark hospital room with a line of chemotherapy streaming into their veins or confronted their mortality in quiet hours alone somewhere – all at such an unimaginably young age? Looking around, people all along the course carried signs with photos and memories of loved ones lost too early- and yet there was hope there too. I was not the only one that noticed. The event was permeated with a hope that cannot be destroyed. Everyone felt it together.


This is one of too many examples to cite during this sacred day. To recommend this race like I have others would not be doing the event justice. This is a race for anyone who has ever doubted that triathlon could change the world or anyone who wants to witness what that change looks like in full display. I hadn’t ever seen it before; but now I have- and I know now that this sport is much bigger than I realized.

Nicole Kelleher and her Half Full friends, first place relay team!

Be a part of Half Full Triathlon!

Half Full Triathlon LIVE!

Powered by Social Media Partner

Half Full Triathlon is more than just a race. Half Full is about a fight. It’s about people. It’s about stories. The Ulman Cancer Fund for Young Adults (UCF) wants to know what has brought you to participate in this 70-mile fight representing the 70,000 young adults diagnosed with cancer each year. What got you to the starting line?

There are many ways to share your story; blog, make videos, take photos, even Tweet!  The UCF is partnering with R2integrated to create the ultimate social media mash-up from the Half Full experience: the Smash Page. Your stories make this event what it is; we encourage you to share them.

How to share your story and be a part of the fight:

Ø       >Tweet it - #halffulltri

Ø       >Photograph it – email to halffulltri@r2ismash.com

Ø       >Blog it – tag halffulltri

Ø       >Capture it on film – upload to YouTube and tag halffulltri

Make sure to use the tag halffulltri when uploading to FlickR, YouTube, Facebook, Twitter or your blog! All of your content will be streamlined to the Smash Page.

Be a part of the hype! Check it out:

www.halffulltri.r2ismash.com

@halffulltri
@ulmancancerfnd

The Blog about CANCER to 5K Program Growth!

Words fail to describe how proud I am to be a part of Team CANCER to 5K so for the Spring 2010 Season, I am going to let the pictures to the talking.

I will say this much: 15 Cancer Survivors, 6 states represented, 3 races (in FL & MD x 2), over 25 Pace Leaders and Sherpa Volunteers, 1 - Coach Bob, 3 - Assistant Coaches, myself, the Ulman Cancer Fund, a lot of CowBell and 5 more CANCER to 5K Finishers Medals went into the Spring 2010 season!

To-Date there are 32 Cancer Survivors in the United States who have earned the CANCER to 5K Finisher Medal by running/walking their FIRST 5K or 10K since having been diagnosed with cancer.

Way to LiveSTRONG! Enjoy the SLIDESHOW!

This Fall 2010, we are *thrilled* to be adding another local Team CANCER to 5K Training Program in Howard County, MD in addition to our Northern VA/DC Team and our "At Home" Training Program for out-of-area Survivors!

The Howard County Team starts training on Saturday, July 24, 2010 in Ellicot City, MD

The Northern VA/DC Team starts Fall Training on Saturday, August 7, 2010 in Arlington, VA.

Don't Miss Out!  SIGN UP today!

Holly Shoemaker

VA/DC Cancer to 5K Program Manager/Assistant Coach

Stage III Nodular Melanoma Survivor

The blog where I introduce our newest intern...

Hello!  My name is Bridget Flynn, I am a UMBC student interning with the Ulman Cancer Fund for the summer, and in high school my friends had a running joke that I must be part plant.

The joke wasn’t founded on my physical characteristics (I am neither leafy nor green), but rather on my habit of basking in sunlight wherever I could find it.  The sense of well being I received from sunbathing was so strong that we decided photosynthesis must be involved somehow, and that became my excuse for dawdling by sunny windows or demanding to go outside during every halfway-decent lunch period.

Getting a tan wasn’t the point for me, but of course I never wore sunscreen either.  I figured I didn’t really need it unless I was at the beach. Skin cancer?  That was something that happened to old people. Cancer, in general, was something that happened to old people, or sometimes little kids – not to someone my age. Definitely not to me.

You can probably guess where this is going: it did happen to me.  In September of 2008, two weeks into my sophomore year of college, I was diagnosed with Stage III Ewing sarcoma, originating in my kidney.  All my feelings of invulnerability evaporated in the moments of a single CAT scan, and when I went back to school after my treatment it drove me crazy to see people smoking and sunbathing as if their bodies could never break down.

Now, my positions as president of UMBC's Colleges Against Cancer chapter and as an intern here at the Ulman Cancer Fund for Young Adults have given me an opportunity to educate my peers (and anyone who will listen) about steps they can take to prevent and detect cancer.

I’m sure anyone reading this blog already has a better-than-average understanding of the dangers of melanoma, the importance of sunscreen, and the vulnerability of anyone, young or old, to this disease. However, in the course of research I’ve been doing as part of my internship I’ve found some really interesting information, and I wanted to share it with you:

Melanoma and Sunscreen: An Overview

Melanoma is the most serious type of skin cancer, accounting for more than 75% of skin cancer deaths. Although it is completely curable if caught early, once it has spread beyond the skin it is extremely difficult to treat.

Melanoma is also the second most common form of cancer for young adults aged 15-29 years old, and Doug Ulman, the founder of the Ulman Cancer Fund for Young Adults, is a two-time melanoma survivor.  The Ulman Cancer Fund for Young Adults is deeply committed to educating people about skin cancer prevention and has a “Ban the Burn” curriculum for use in high schools.

The American Cancer Society estimates that the lifetime risk for getting melanoma is 1 in 50 for fair-skinned people.

Most people know that exposure to UV radiation is the biggest risk factor for developing melanoma, and will put on sunscreen when they head to the beach. However, UV exposure happens every day, and the effects can be significant. A recent study by the St. Louis University School of Medicine found that of the malignant melanomas treated in the university’s skin cancer unit, 76% were on the left side of the body, most likely from sun exposure while driving. 

The St. Louis University study is a sobering reminder that sun protection needs to be a daily activity.  The Skin Cancer Foundation recommends wearing long-sleeved clothing when practical, and applying a sunscreen of SPF 15 or higher every day.

When choosing a sunscreen, here are some things to be aware of:

·      Most sunscreens – even those labeled “broad-band” or “broad-spectrum” - do not adequately protect against UVA radiation, which doesn’t cause sunburns but contributes to the incidence of melanoma.  To find a sunscreen that provides better UVA protection, check the ingredients label for titanium oxide, zinc oxide, avobenzone, or ecamsule.

·      A sunscreen’s SPF, or sun protection factor, refers only to protection from UVB rays and not UVA.  Also, an SPF of 30 does not offer twice the protection of an SPF of 15.

o   SPF 15: filters 93% of UVB radiation.

o   SPF 30: filters 97% of UVB radiation.

o   SPF 50: filters 98% of UVB radiation.

·      The Environmental Working Group, a nonprofit public health group, identified several common sunscreen ingredients as hazardous in its 2010 Sunscreen Guide.

o   Oxybenzone (also known as Benzophenone-3) is a potential hormone disruptor that can affect the nervous system and has been linked to cancer in some laboratory studies; it also releases DNA-damaging free radicals when exposed to sunlight.  It should especially be avoided for children.

o   Vitamin A (listed as retinol or retinyl palmitate) is added to 41% of sunscreens because of its antioxidant properties.  However, a recent FDA study found that vitamin A actually breaks down in sunlight and produces more damaging radical oxygen particles.  In that study, tumors and lesions developed up to 21% faster in mice coated with vitamin A cream.

·      There is no sunscreen that offers 100% protection from UV radiation, and all sunscreens wear off; remember to apply liberally every two hours (or after swimming) and to seek shade during the peak sun hours of 10 AM to 2 PM.

Although I am more aware of the dangers of sunbathing now, I love it just as much as ever, and I have to confess that I’m probably going to be relying on sunscreen more than shade.  However, I will definitely be spending more time reading the ingredients labels of those sunscreens until I find one that I feel comfortable with. 

Bridget Flynn

UCF Summer Intern and Ewing Sarcoma Seurvivor

The blog where Katrina runs for Team Fight in ANOTHER COUNTRY...

It was precisely 6:30am on Sunday April 11^th as the alarm began to wake us up for our marathon pre-race fueling breakfast… my favorite with a French twist: a French whole grain baguette with peanut butter and bananas.  Delicious.  

As we rolled out of bed it was time to get our race gear in order:

Team Fight Jersey: check

Body Glide (everywhere!): check

Race belt armed with our numbers, GU and plenty of Clif Shots: check

Socks, visor and sunglasses: check

Running shoes: check

Riding the metro to the starting line at the Arc de Triomphe, it was obvious from looking at the other passengers that this was race day in Paris.  Upon arrival, we had the traditional “final” bathroom break (runners you know what I mean), picture in our Team Fight jerseys in front of the Arc, warm-up and stretch before the “official start time” of 8:45am.

With nearly 40,000 runners participating in the Paris Marathon, you can imagine the mob of people packing the street down the Champs-Elysée.  This also explains why it took us nearly 15 minutes to cross the starting line. Just enough time for one last bathroom break.  We finally stepped on the first time pad, our timing chips had started. Only 26.2 miles stood between us and the finish line.

***WAIT A MINUTE!  HOLD UP!  We are running the Paris Marathon?!?!?  How the heck did we get here???***

Flash back to October 2009 during a weekly Skype conversation in the McGowan household.  These had become a regular thing since my brother, John, had left the US of A to go teach English in Montpellier, a town in the South of France.  Always having been runners and having completed a handful of races together, we had our sights set on a marathon.  Never did we plan on doing the Paris Marathon; that is until John realized the race was at the beginning of his April break- the week I was planning on coming to visit!

It didn't take much convincing, next thing we knew we were both registering online for the race.  Training plans were put together soon after. We began that December.  The 18-week program included a healthy mix of long and longer runs, speed work, recovery runs, and “short” runs.  

Both John and I had our ups, downs, ins and outs throughout training.  I had never run more than 16 miles so when 10 or 12 miles was a “light day,” it took a little getting used to.  For John, the biggest surprise (and relief) was that injury did not spell certain doom for the fate of the race.  As with many runners training for a long distance race, shin splints were often a problem.  However, the time taken off from road training and put into rest and cross training ensured he was still in good form for race day.  

Since the beginning of our training, we had set goals for our marathon performances.  Something we soon learned (as first time marathoners) was that setting the right goals was just as important as setting them at all.  Having your eye on a specific split or finish time is useful, but more important is enjoying and appreciating the experience.  As Aerosmith said, “Life’s a journey, not a destination.”  Those 26.2 miles won’t mean nearly as much if you can’t take it all in and appreciate the hard work you’ve put in to make it happen.

***FLASH FORWARD – April 11^th, race day at the start line.**

We finally crossed the start line on the Champs-Elysée. The sound of Black Eyed Peas “I Gotta Feelin’” started to fade and we were officially off!  In keeping with our theme, our eyes were constantly wandering as we ran through the streets of Paris, enjoying everything the race had to offer.  There were so many, but I will share our top 5:

1.  We don’t remember running by Moulin Rouge, but…For pretty much the entire race, streets were lined with supporters and spectators. Our absolute favorite came around 10am at mile 7ish.  It was a mother and her (very) young daughter.  Both were dressed in sexy black and pink lingerie drinking (lots) of champagne; yes both.  We think the mom was giving her best attempt at a kick-line, but the jury is still out.

2.     2. Running of the Bulls?  In Paris? Toward mid-race, the course had runners following the edge of the Seine River that cuts through the heart of Paris.  As such, there were several times we ran through underground tunnels.  In every tunnel, someone would always start a call and response chant to keep morale up.  We felt like we were Running with the Bulls, but inevitably, as if on cue, us and the rest of the runners in the tunnel would join in on the response. 

3.     3. How Parisian?!  Every 5k, the race organizers provided water and fuel.  An unofficial refreshment stop came later at mile 23 with a small table serving cups of red wine.  To no surprise, there was a crowd of runners that had stopped to enjoy their glass/cup before restarting and heading to the finish line. 

4.     4. Now that’s what you call love.  As we pulled around the final curve, the finish line was in our sights!  But what kept us distracted (and entertained) was an overzealous husband who was literally dragging his wife by the arm to the finish line.  Apparently they were set on finishing together, no matter what!

5.     5. GO TEAM FIGHT!  Last but not least was the support that we felt throughout the race.  We have both done races at home (USA) in our Team Fight gear, and constantly heard the cheers that come from the crowd.  But to hear people from all different nationalities with different accents yelling “Go Team Fight” is a pretty cool thing.  

Looking back at the entire experience and finally crossing that finish line in Paris 3 hours 52 minutes and 33 seconds later, we are both happy to say that we have no regrets about how we attacked or finished it!  There’s definitely lots of room to improve for our next one (and yes there will be a next one), but having this experience in the books won’t be something that we will soon forget!

Katrina McGowan,
Team Fight Program Coordinator
and
John McGowan
Team Fight Member

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