Thursday, December 18, 2008

What Cancer Feels Like

It's a beautiful day in LA today. One of those days where you almost, for an instant, forget that cancer has once invaded your soul, the spirit that makes you... you.

Crossed the threshold from bad nightmare to horrible, sobering reality.

I'm convinced that cancer is not a disease of the body.
Instead it attacks where we are most vulnerable. It hits us where it hurts most, the most tender of tenderest spots.

I was talking to a friend of mine the other day, hoping to explain to him what the experience is like.

How do you even begin to describe it really?

Hearing those words from your doctor for the first time feels like you're falling down a dark, endless pit. You continue to fall until you hit rock bottom. And although you are bruised, battered, and terrified, you dare not show those around you.

You smile when you want to cry.
You cheer for others when you really need cheering yourself.
You say it doesn't hurt, but it hurts more than you could ever have imagined.
You say don't visit, but you would like nothing more than to be held.

Too much is riding on your faith, too much hope riding on those fake smiles.

And when you land, it feels like you are in a pitch black room... soon you notice you are completely and utterly alone. You try as you may to feel around you, but everything seems foreign. Nothing to hold onto, nothing to climb out of. It is cold, dark, and unforgiving.

Soon, you don't even recognize your own body. How can you really? Scars, bumps and bruises. Your face doesn't even seem to look familiar anymore.

Eventually, you learn to feel accustomed to the darkness, stumbling around for anything of significance to remind yourself of the life that seems so far gone.

You hear voices, those of friends and family that are doing their best to support you, but nothing is meaningful.

People say they understand how you feel, but you know this is not true. It's something said to calm your fears, and to calm their worst nightmares.

You live day to day existing. Getting high on pain meds, dilaudid, morphine, fentanyl, providing brief breaks in time, allowing you a deep breath, faint reminders and scents of the old life, one where everything was sweet. When the drugs wear off, you stumble back into the darkness, hoping and praying that it will end soon, be it the treatment, or the life you are clinging so softly onto.

Then, suddenly, almost at the final hour, you seem to notice that you are not alone in dark. You make out faint shapes.

One, two, five. You hear the familiar words of your own worries, voices recounting stories that sound like your own. You feel an immediate bond, one stronger than anything you've ever felt before.

You realize slowly, but surely that you are surrounded by other lost souls. Ones that seem to genuinely understand the depth of your personal pain. Never judging... only accepting our shared fate. This connection doesn't come difficult, it's as natural as the day is bright.

You learn the meaning of friendship, kindness, generosity, patience and love. The darkness slowly begins to subside, leaving behind a brief haze. And though it may not be the shining sun, you realize that the endless night is beginning to actually end.

With it comes a faint haze of sunrise, and as you look around you, you realize you were never really alone. That we are forever connected, and our journey is one that is taken by all of us.

Talking with other survivors has showed me that regardless of age, gender, sexual orientation, financial situation, or anything else really, we are all in this together.

Hoping that the chapters of our lives will not be filled with agony about the cancer that struck us, rather filled with a triumphant story of a young person who yearned for more than just being a victim of a horribly insidious disease, but someone who will be remembered as a loving person who did the very best with what he or she was given.

It is the most amazing feeling in the world, one that is undoubtedly one of the few rare gifts of cancer...

Denny
Nasopharyngeal Cancer Survivor

Thursday, December 4, 2008

Livestrong Young Adult Alliance

New Friends-Same Passion

What a great meeting. A group over 100 assembled at the Annual Young Adult Alliance on November 12th -14th to share collective experience to advance Young Adult oncology. The conference started a day early for me as I had an opportunity to meet with some folks from the LAF and share some best practices and brainstorm about the year to come. I also had the chance to catch up with a friend who now works for the LAF. Small world! We had a great time and were also able to share ideas and inspirational stories.

Topics included Resource Sharing, Young Adult Clinical Trials, Follow up Care, New Forms of Media, Standards of Care and Awareness.

Partnerships and Collaboration were some of the key themes that were my take-aways from the meeting. Some great relationships were formed and wonderful and powerful ideas and plans for 2009. There is much momentum in the cancer community and it is our charge to act united and efficiently as we all focus on our fulfilling our Missions in the year to come. New task forces were formed and strong initiatives were structured. Our challenge now is to make sure that we keep our focus and act collectively unified so that we will have great success stories to share at next year’s meeting. These are truly special people. All having made a commitment to supporting the cancer movement. Everyone has committed in different ways, but share the same passion and determination in their organizations mission. I have never met more passionate people than I did at this meeting. It is cliché, but it was truly inspirational.

We had a great key note address from Doug Ulman, President of the Armstrong Foundation as well as a being able to welcome Eric Shanteau, a member of the US Olympic swim team and cancer survivor, to the LYAA team. Eric shared his story with all of us and he was able to mesmerize the crowd of his story and his courageous and patriotic decisions. WOW!

A great group and a powerful ALLIANCE!

LIVESTRONG

Brian
UCF Staff

Friday, November 7, 2008

Amber's Story

I have never been much of a fundraiser/activist for anything in my life. I mostly cared about living my life the way most average Americans do. Get the 9-5 job, settle down, get married and have children. That all changed when I was diagnosed with cancer 2 years ago. I finished my treatment in 4 months and went back to my so called “normal” life- my job, planning my wedding and basically sticking to my original plan. I came back to work and although I really love what I do, it didn’t seem like enough. I soon realized that cancer wasn’t just a bump in the road for me that I could get past after 4 months. It really opened my eyes and made me feel like I needed to take action for those who couldn’t. I decided I needed to start volunteering to help those I saw in the hospital who weren’t as fortunate as I was, whether it is a more advanced form of cancer, battling insurance or finding a way to afford their medication.

Although I am new to this, I decided to jump right in and take on as much as could. I signed up with Ulman Cancer Fund and have volunteered to help on a few different occasions; I have also helped to create a program at the hospital that provides knit hats to patients losing their hair due to treatment (the real hero for this program is my nurse Trish). But so far my greatest accomplishment (keep in mind I am new to fundraising) was that over the past 2 years I have raised over $9000 for a well known cancer organization. That money goes to help patients who can’t afford their medications, need transportation for treatments or just a resource to turn to when they need answers. I participated in a walk (like any other cancer walk) and solicited friends, family, and co-workers (basically anyone whose email address I had who wouldn’t think it was spam) for donations or to join my team. This was such an easy and fun way to raise money. It’s a simple walk, less than a mile, and last year 29 people joined my team and the team raised $4200 (I thought we raised so much because I had just finished treatment so people felt the need to do something).

This year I again sent out the emails, I didn’t discriminate this time- if your name was in my address book, you got an email (probably more than 1) from me. I really wasn’t expecting a huge response since I have been in remission for almost 2 years, but to my surprise word of mouth got around about the walk. I had almost 40 people sign up and we raised over $5000. I won’t lie- I did sort of bribe people by throwing a huge party at my house before and after the walk so that may have contributed to the success, but in the end all I cared about was raising money to help others. I had quite a few people ask me about my plans for next year’s party because they had some friends who may want to contribute and join the team. I have a feeling the team membership and the donations will continue to increase and my parties might eventually have to up the ante and include some fantastic display of fireworks to show my appreciation, but for now we’ll take it one year at a time.

There are so many people out there battling this terrible disease and although I can’t afford to leave my job to volunteer as much as I would like to, the things I have done so far takes so little effort, but have a huge impact. It has definitely made my life after cancer much more fulfilling.

Amber Schad

Monday, November 3, 2008

Cold and Windy Days

"It is easy to begin something new...the hard part is to see it through"
-Anonymous

This past Tuesday CANCER to 5K group workout (October 28th) was not for the faint of heart. It was the first Tuesday night workout on a new track with lights. (Washington & Lee High School in Arlington, VA) It was ALSO the first really bitter cold day of the Fall.

Nothing says ENDURANCE and STRENGTH quite like showing up for a workout when the sun is down, the wind is blowing and the temperatures drop. There we were, myself and assistant coach Arnetta, huddled against the far wall of the track, staying out of the wind until the workout officially began - taking bets on if we would be running alone. One by One, through the bitter wind, a few runners came out.

While our group stayed small (5 runners in all), we were surrounded, by the end of the workout, by no less than 20 other runners from different groups who had met to workout at the track. All of us out in the bitter wind and darkness, running in circles, keeping our commitment to health and fitness.

The moment was the perfect reminder, that no matter what your goal is - running a 5K, completing chemotherapy, recovering from surgery, training for a triathlon, raising money for Team Fight or any of the many worth while charities - there will inevitably come a moment when it would be easier to "take a day off" rather than face the "cold wind and darkness" and push through on the path to your goal.

That is when it helps to gather your TEAM (family, friends, doctors, teammates) around you - and brave the challenge together.

24 days to race day! Live STRONG!

-Holly Gannoe, Assistant Coach
http://www.cancerto5k.com

"Young Adult Cancer Survivors Giving New Meaning to the work ENDURANCE...One Mile at a Time!"

Thursday, October 30, 2008

Here at the Ulman Cancer Fund for Young Adults we help people every day. Sometimes it is just by listening, other times by grants, or providing materials.

Personally, I am fulfilled in many ways by giving to someone in anyway that I can. The other day I spoke to a woman whose son had recently been diagnosed with cancer and she was feeling as though her life had been turned upside down. Just by listening and providing her with information on organizations that could be of assistance I was uplifted. Even though I did not do much, sometimes it is the little things that can make a difference.

The flip side of giving or being a caregiver is to be a care receiver. This is hard for most people especially those who like to give to other people. I am someone that has always volunteered at church, with youth or for other worthwhile organizations. I am a very independent person and am used to doing things for myself. Accepting help has always been hard for me and I have found asking for help to be additionally challenging.

In the last 18 months, I have often found myself in circumstances when I am in need of help and unable to do things on my own. In June 2007 I had a recurrence of cancer and have since been regularly dealing with the side effects of surgery, chemotherapy, radiation, and infections. At first, I was determined to face my recurrence all on my own. When people asked what they could do for me, I said that I was fine and asked if they could just pray for me. I know first hand that when someone we care about is sick or going through a hard time we can feel helpless. Helping a sick friend or loved one with tangible things can help the caregiver as well as the person they are helping.

I have had to learn the hard way that I cannot do things all on my own. It does not make me a failure or a weak person to admit that I am not Superwoman and in need of assistance.

I resisted help at first always saying I was fine and did not need anything. Then I started to take people up on some things. Accepting help started slowly and gradually grew. I started accepting meals cooked for me once a week and sometimes when someone offered to do something specific I would accept. I was always grateful when helped, I just felt stressed out that someone was taking time out of their busy lives to do something for me.

I will never forget the first time I got up the nerve to call someone and asked for something. It seems so small and insignificant now, but at the time it was a big deal. It was a simple need – I has run out of toilet paper. On top of feeling the side effects from chemo I hurt my back and was in a lot of pain. I was spending all my time on my couch or bed. I needed to go to the store for several days, but was unable to drive or muster up the energy to leave the house. It seems like a small thing now, but there are a few things that you cannot do without and toilet paper is one of them. I realized that I could not be stubborn about this and had to ask for help. I called a friend that was more than happy to help. Up to that point, I just could not find the courage to call someone up and ask them to go out of their way for me.

I am truly blessed that I have people in my life that are able to pick up the slack, because I know that there are many people affected by cancer who do not have the support system I have. Over the past year I have had people bring me meals, clean my house, buy groceries, pick up prescriptions, repair things around my home, do laundry, run errands and so much more. I call these people my “Angels”. They have truly been sent to me to make my battle with cancer an easier one. As hard as it is to accept that I need help, it is helpful to know that by accepting help I am helping others as well. I have talked to many of my “Angels” about my struggle with accepting help and how hard it is for me to request certain things. I am always assured that if someone did not want to do something or was unable to they would say so. My one friend told me that she is happy every time I ask for something, because she knew that she is helping me with exactly what I need instead of trying to guess to what is helpful.

I have come a long way the past year in accepting help, but still struggle with it everyday and often need reminding that allowing others to give is as important as giving yourself. There are times when we can be caregivers and times when we need to be care recipients. I encourage everyone to give back when they can, but learn to accept help when needed.

Allison
Intake & Resource Coordinator

Friday, October 10, 2008

Six Weeks til Race Day for Team CANCER to 5K

When I was diagnosed with Melanoma (Stage IIIA) at age 34, all I wanted to do was run. It was May 2005 in Northern VA and as I sat in the recliner in the chemo lounge at VA Hospital Center, 5 days a week for 4 weeks, I spent my time planning and plotting my workouts. The first week was great, I got up every morning and did a short run, 1-2 miles of easy jogging. I remembered thinking "If this is what chemo is like, this will be a breeze." That weekend, the full effects of 5 days of Interferon Alfa 2B brought my illusions to a screeching halt. I barely had the energy to walk around the block with my boyfriend.

Week Two started out better once my Onology Nurses and I found a good mix of hydration, tylenol and timing. I promised to slow down to walking most mornings, every other day, for as long as I was able (usually no more than a mile). It was a mile to the hospital from my house and my nurses would shake their head when I explained sheepishly that my pulse was a little high because I just walk to treatment. I officially became "that crazy girl Holly" on Week Two.

Week Three the walks were fewer because the truth was that I was sleeping more and having some trouble with my balance. Turns out my blood counts were too low, I got a day off from treatment and spent the day moping. It was beautiful outside and I wanted to run, walk, just get what little blood I had left flowing. I began to live vicariously through my friends. My girlfriend Keri would sit with me in treatment and tell me all about her latest race. I would listen intently until the benadryl kicked in and I would warn her "Keri, I think I am going to fall asleep..."

Week Four was the home stretch, after this week, I would graduate to self-injections of Interferon 3 times a week for the next 48 weeks. I spent those last 5 days in the chair - planning and plotting how I would convince my Oncologist that together he and I could get me to the start line of the 2005 Marine Corps Marathon. After all, I had registered back in March, long before cancer.

My Oncologist was a runner himself, and he made a deal with me. "You can train for the marathon but if there comes a day that your blood work tells me a different story, you'll stop running, no questions asked." We shook on it and for the next 5 months I ran when I could, walked when I had to and on October 30, 2005, I finished the Marine Corps Marathon in 6:07:33.

That was the day that the idea for the "CANCER to 5K program" was born. (http://www.cancerto5k.com/)
In May 2007, the Ulman Cancer Fund awarded me a Visionary Grant to help make my idea into a reality. The idea is a simple one: Lets offer 12 weeks of FREE training, entry into a local 5K race and a finishing medal to other young adult cancer suvivors, regardless of their current treatment status (with their Doctor's permission) so they can gain and/or maintain fitness, get some relief from the side effects of cancer treatments and focus on something else besides cancer.


Team CANCER to 5K - Ulman Fund's 10-THE RACE 5K, October 27, 2007

The program is growing and local survivors are reaping the benefits! One mile at at time...

In Fall 2007, we brought 2 runners and 12 volunteers to the Ulman 10-THE RACE 5K in Columbia, MD. Both Lance Armstrong and Doug Ulman became honorary members of the CANCER to 5K program on that day and received official finishing medals.

Team CANCER to 5K - Capital Crescent 5K, June 1, 2008

In Spring 2008, we grew again and did two 5K races. We had 2 runners and 8 volunteers run the Capitol Crescent 5K in Bethesda, MD and then we had 4 runners and over 14 volunteers running both distances of the Survivor Harbor 7 race (5K & 7 miles) in Baltimore, MD the next wekend. On that day, one of our survivors, Ben F., took 2nd place in the Open Men's Survivor category.


The Fall 2008 CANCER to 5K program got underway September 6th in spite of Tropical Storm Hannah's best attempts to stop us. This season's group of young adult cancer survivors is a great bunch! We have 7 cancer survivor's training with Coach Bob and our mighty group of volunteers (15 runners strong). We are halfway to the season and to race day, the VA Turkey Trot 5K in Centerville, VA, being held on November 27, 2008 (Thanksgiving Day). Just six weeks to go.

Team CANCER to 5K - Survivor Harbor 7 Race, June 8, 2008

All together at any given Tuesday or Saturday workout, there are between 15-20 of us running circles around the St. Stephen HS track (Tuesday Nights) and running along the Washington & Old Dominion/4-Mile Run Trail of Bluemont Park. (Saturday Mornings)

Maybe you have seen us, while on the W&OD trail in Northern VA? Several small groups of 4-5 runners each, varying paces - chatting away and running in the early morning. You'd know who we are if you have seen us at any races! Just look for the Bright Yellow and White and Neon CANCER to 5K shirts worn by our runners with BIG SMILES. If all else fails, listen closely ....You hear that COW BELL? YEP, that would be us! MORE COWBELL PLEASE!

We're just a bunch of young adult cancer survivors giving new meaning to the word ENDURANCE...One mile at a time.I'll be blogging weekly through race day so look out for Team CANCER to 5K updates exclusively here on the Ulman Cancer Fund Blog.


Holly Gannoe

Tuesday, October 7, 2008

It’s finally here in the United States…Healthcare for all!

Ok, not exactly as it sounds but now that I got your attention, listen up to something pretty innovative and exciting!

Howard County, Maryland (the community we were founded and where our offices are located) is officially making an effort to offer healthcare for all of it's citizens – even those without insurance.

This past week, our entire staff attended an exciting event held by Howard County Government and the Howard County Health Department to officially kick-off their Healthy Howard Access Plan. With over 25 people from the community present to enroll in the program, County officials and other community leaders were present to unveil the details of this exciting program and start enrollment. One politician commented, it’s no longer a question of ‘if’ we’ll have universal healthcare in this country, but rather how we’ll have universal healthcare. In a nutshell, this plan will provide healthcare for uninsured Howard County residents.

The event was a momentous time in Howard County! Enrollment is now underway and people are excitedly waiting to see what happens and how it positively impacts the uninsured in Howard County. Equally important, leaders in jurisdictions all over the country are watching to see how this plan will work. If successful, it will serve as a model for how services can be made available to uninsured people all over the United States with government, health care institutions, foundations, non profit organizations and some companies in the private sector cooperating.

Ken Ulman, Howard County Executive and brother of our Foundaer, Doug Ulman, and his team under the direction of Dr. Peter Beilenson, Howard County Health Officer, have worked tirelessly to make his vision of health care for all a reality. As we all know, many cancer diagnoses are made dangerously late particularly in those patients who do not get regular health screenings and check ups due to lack of health insurance or access to health care. This plan will assure that the clients will have 6 primary care visits (plus an additional GYN appointment for women) annually in addition to recommended screenings for early detection of disease. This level of care will certainly save lives and greatly improve the quality of life for it's participants.

Congrats to Ken Ulman, Dr. Bielenson and the entire hardworking team at the Howard County Health Department for having the innovation, dedication and will to introduce such an exciting initiative! There hard work is going to help change lives and possibly the healthcare system as we know it!

Find below an article that appeared in the Washington Post last week about the groundbreaking program.

Washington Post Article

Brock Yetso
Executive Director

Monday, September 29, 2008

Saying Goodbye to Young Adulthood...

I have a bit in common with Lance Armstrong; both diagnosed as young adults with testicular cancer, we each have three children, our survivorship has gone beyond the 10 year mark, we both have a love of cycling and we share the same birthday (9/18).

Lance turned 37 this month, I turned 41. While Lance was announcing his return to professional cycling to bring attention to his global cancer initiative, I was busy at work in my day job at the National Cancer Institute and my volunteer effort as President of the Board for the UCF. But I did notice something different about this birthday than any of the previous ones I've celebrated since my diagnosis in 1995 at age 27.

I'm no longer a young adult!

Young adults are commonly defined as those between the ages of 15-40. There are 70,000 young adults in that age range diagnosed with cancer every year. I was about right in the middle of that age range at the time of diagnosis. Married just a year and half, cycling was part of the reason I even noticed my tumor.

Coming off the bike at the end of a ride, I experienced pain and noticed a lump on my testicle. I chalked it up to riding on the pot holed filled streets of DC and gave it time to subside. Instead, it swelled, got very sensitive and more painful. My wife pushed me to do what I knew in my heart was the smart thing to do and I made an appointment to see my internist. He took one look at me and referred me to a urologist who had me in surgery a week later with a pathology report coming back with stage 1 TC. I can't even claim to being shocked, deep down inside I knew it wouldn't be good news. I went for not only a second opinion but a third and all three oncologists said the same thing; surveillance or chemo.

Before I committed to a course of treatment, I needed more info. The internet back in 1995 was a shell of what's available now. All I could find was a basic AOL chat room, which while helpful, didn't have any content. Even the information I received from the NCI was not specific to TC or young adults. Outside of the input I received from other TC survivors, I was on my own to make sense of this. We chose chemo and my oncologist was astute enough to suggest banking sperm prior to starting. My chemo was 8 hours by IV for 5 days with 21 days off. While sitting in the chemo ward in my pleather covered barcolounger getting my 3 drug cocktail, I noticed how much older the rest of the patients were. In fact, in my entire time there for treatment and follow up, I could count on one hand the number of young adults I saw there.

Like many others, my diagnosis helped shape my future. I shifted my health care career to the oncology community as a way to recognize and give back to those that gave their time, energy and lives to developing a chemo regimen that makes early stage TC one of the most curable of cancers. I've been employed in the advocacy community and now at the NCI and have been affiliated with the UCF for the past 6 years. In that time, I've very much respected the effort the Ulman Family put forth to make a difference when Doug was diagnosed and also noticed that there was a lack of information out there for young adults. As a result, the Ulman Family, Brock Yetso (UCF ED), the great staff at the UCF and an amazing volunteer Board of Directors have spent the past 11 years growing the UCF into an organization that is recognized as a leader in the young adult oncology community. Co-chairing the Young Adult Alliance, publishing guidebooks, developing a patient navigator program, and offering scholarships are just a few of the substantive ways the UCF supports young adults affected by cancer. In fact, the scholarship program is one of the most rewarding things I participate in. Reading the applications makes me feel fortunate that I could complete my Master's degree despite my diagnosis happening with a year to go in my program but it also makes me angry. Angry that while we've made progress in some areas, overall improvements in treatments and survival are stagnant and as a result these young adults have to interrupt educational pursuits. Some never get back on track, but through the scholarship program, the UCF can help support young adult survivors getting back to school, so they can enter into their career of choice, perhaps to help bring an end to cancer.

Young adults have needs very different from pediatric and adult oncology patients. It's a wide spectrum of needs as well, whether the issues are around schooling, job, family, fertility, or insurance to name a few. It's because of the effort of groups like the UCF and individuals like Doug Ulman and Lance Armstrong that the 70,000 young adults diagnosed each year have focused efforts at meeting these needs. It's also why young adult survivors feel empowered to speak out against cancer and do something about it. This ultimately is the groundswell that will have the greatest impact.

As I move out of young adulthood (but refuse to grow up!) and near the end of my term as President of the Board, I express my appreciation to the Ulman Family for their work and to Brock for his leadership. Young adults affected by cancer have more resources than ever before and have a greater opportunity than any point in the past to make a difference in the fight against cancer.

Thanks for reading,
Steve Friedman, President of the Board

Friday, September 26, 2008

Video from Savage Man Triathlon!

Click below to view the video from the Savage Man Triathlon.

Savage Man Video

Brock Yetso, Executive Director

Thursday, September 25, 2008

It’s not about the bike…it’s about ‘hammering’ cancer!

Yesterday was an exciting day in the world of sports and cancer – but mostly cancer. Lance Armstrong (arguable one of the greatest athletes ever but definitely one of the greatest cancer advocates ever) talked about his plans for coming out of retirement from professional cycling and the Lance Armstrong Foundation’s launch of the LIVESTRONG Global Cancer Initiative .

As both a cyclist and an Executive Director leading an organization in the fight against cancer,
these announcements are both exciting and monumental on many fronts. To take off close to four years from competitive cycling and decide to come back and compete against some of the fittest athletes on the face of our planet – pretty amazing. To do this as a cancer survivor and use it as a platform to raise awareness of a disease that affects and takes the lives of far too many men and women all across the world – pretty darn cool and even more impressive!

Our Founder, Doug Ulman, joined Lance yesterday in New York City at the Clinton Global Health Initiative meeting to discuss these exciting plans and they held a press conference afterward. If you didn’t get a chance to read about either initiative, I encourage you to visit www.livestrong.org to learn how you can get involved and watch yesterdays press conference led by UCF Founder Doug Ulman.

Our organization couldn’t be more proud and supportive of the work Doug, Lance, LAF and all the other partners involved in this massive undertaking are doing to make cancer a global priority. And although it’s not the top priority, we’ll also keep our fingers crossed that Lance is wearing Yellow in Paris!

Tuesday, September 23, 2008

Not just another triathlon…A Savage Race to Fight a Savage Disease – CANCER!

This past weekend, my fiancé and I traveled out to Deep Creek Lake, MD to participate in one of our last triathlons for the season. Sporting our Ulman Cancer Fund tri-gear we proudly represented Team FIGHT! SavageMan Triathlon was the name of the race and let me tell you – everything about it lived up to the name. We’ve both done our fair share of triathlons at varying distances and difficulties. From the Ironman distance with long steep climbs to the flat fun sprints where everyone crosses the finishes and is smiling. This race was different, savage in all its elements and not just the difficulty of the course.

For starters, the race course was arguably one of the most challenging courses either of us (and I’d venture to say the rest of the 800+ participants) had experienced. The swim was a pleasant one in the fresh and relative clear water of Deep Creek Lake. From the swim to bike transition is where the real pain began and our “Savageness” was tested. We opted for the shorter international distance (thank goodness!) of the weekend but several friends who were with us went after the longer ½ Ironman distance (1.2 mile swim, 56 mile bike, 13.1 mile run). Steep long climbs and sharp dangerous descents – those who were fortunate to make it off the bike in time got to run either 6.2 or 13.1 painful miles. At one point in the run I was jogging up a ½ mile off-road rock trail to a water tower when I decided to walk – only to realize my walking speed was faster than my jog at that point in the race – go figure.

Despite the pain, difficulty and “savageness” of the course, my fiancé and I both finished the race in respectable times and I’m excited to report our friend who encouraged us to sign up finished his first ½ Ironman distance tri in just over 7 hours (a very good time on this course).

Amid all the hills, sweat and pain – there was another savage part of this race that left an even bigger impression on us – and helped justify the self inflicting pain we put ourselves through. SavageMan Triathlon is organized by and benefits the Joanna M. Nicolay Melanoma Foundation . Founded in January 2004 in memory of Joanna M. Nicolay and her courageous battle with melanoma – the deadliest form of skin cancer - the foundation has grown dramatically to become an influential voice in the melanoma community and is now established as the voice for melanoma prevention, detection, care and cure in Maryland and growing dramatically in national outreach.

Skin cancer and Melanoma is a disease that affects young adults in astounding numbers. The UCF and my family have both personally lost close friends to this deadly disease. Although is was a painful way to spend our Sunday morning – we couldn’t think of a better way to spend 3 hours of our weekend with 800+ other triathletes fighting a SAVAGE disease. Kudos to “TRI-TO-WIN” events for putting on a great race and more importantly, doing there part if this FIGHT against cancer! I encourage anyone up for a great race or savage enough to fight this savage cancer, join us again next year.

Brock Yetso, Executive Director

Monday, September 15, 2008

Election time favors (legal ones!) for Elizabeth

I grew up in Washington, D.C. (yes, some real folks actually live there) and the first presidential election I remember being aware of was the Reagan-Mondale one in 1984. I had recently entered 4th grade, the point at which elementary school starts getting “serious,” and was nearing the home stretch of a year of surgery, radiation and chemotherapy for rhabdomyosarcoma. Now, 24 years later, I am a long term survivor of childhood cancer, the daughter of two survivors (breast cancer and melanoma), a mom of two amazing little boys and a member of the Ulman Cancer Fund team, working everyday to make sure young adults living with cancer are supported, educated and connected.

This election is monumental in so many ways. Much credit should be given to everyone at the Lance Armstrong Foundation, and its president, Doug Ulman, for bringing this issue to the forefront and demanding on behalf of all 10 million of us cancer survivors that this be addressed (visit LAF website for more information).

I of course wasn’t old enough to vote in 1984 but now at 33 (yikes, I am growing up!) have a definite opinion about who the next president should be. Every Monday for the next 8 weeks I will be sharing my thoughts on cancer policy, the young adult cancer movement, and the Election. I am not supposed to tell you in this forum who I plan to vote for (but I will anyway on November 3rd) or for that matter who you should vote for, but I can ask you, and all of those who care about young adults impacted by cancer, to do a few favors for me. So here we go…

Favor #1: Educate yourself and everyone you know.
Get on-line and read those plans!

Barack Obama's Plan
John McCain's Plan

Print them out for your friends who may not have computers. Paste them on bathroom stalls where they cannot be ignored. Read them to your elderly grandmother; text them to your 18 year old son.

Evaluate both cancer plans based on the future vision of each candidate…where would we be without hopes and dreams after all? Do ground your analysis, though, in what these three men and one woman have already done for cancer patients, survivors and their loved ones. Dig through the all the pretty fluff on the respective websites and links to how you can contribute, and ask yourself some important questions:

What kinds of cancer related programs have McCain, Obama, Biden and Palin supported or initiated the states they represent? Have they voted to cut, increase or maintain NHI/NCI funding? Who has paid attention to the fact that many, many women in this country cannot afford annual mammograms or pap smears and did they turn knowledge of this inequity into effective legislation? Which candidates have demonstrated through their actions that expansion of clinical trials is key to finding a cure?

Next week…Favor #2: Considering the big picture

Elizabeth Saylor, Program and Grants Manager

Monday, September 8, 2008

Why I Fight

I am one of the “newbie’s” here at UCF and I wanted to post on our new blog. I just finished a “project” entitled “Why We Fight” with an unbelievable person and new friend. She approached me to help on this project and had an amazing and REAL perspective which I hope I will never have. To quote my friend “Cancer Sucks”! I have been struggling to figure out how to explain why I fight for the last 2 days, so bear with me. We all have different definitions of “fight”. My definition of fight is still a work in progress because the meaning of this term has evolved in front of me in the last few weeks.

I am very lucky to have met some of the most unbelievable, caring and passionate people in the past few weeks in my new endeavor. People who have dedicated their lives to “fighting”. Everyone having different reasons for fighting. Some fight for their mothers, their daughters, their sisters, their daughter’s friends, themselves, and some for their own lives! Each fight is different, but similar in some ways. We all fight to WIN. We each pick a specific battle, weather it is raising awareness for our cause, or connecting patients and families in need, or supporting a patient on the other end of the phone who needs to talk to someone, or writing a grant so we can continue to support, or listening to a friend who is having a “bad” day, or making sure we have 400 people in place to “Screw Cancer” in October. We all have tasks to focus on.

We all pick battles and fight as best we can in hope that we can affect the outcome of this War on Cancer. The desired outcome is clear but the path ahead is not. What can we do to help? Wouldn’t it be great if Cancer was just part of some History lesson soon and didn’t pose a threat to anyone!

So I ask you one favor. After reading this, sit back and close your eyes. Think about those you know that have battled or are currently battling Cancer. I know you all know someone and most likely more people than you would like to admit. This is Why I FIGHT! Feel free to joint in! I know we can work great as a TEAM!

Brian
Marketing and Resource Development Specialist

Friday, September 5, 2008

You Tube Video

The creative juices at UCF have been flowing this week - we have 2 new videos on YouTube! Check them out - they are super!

Special thanks to the production team of Allison and Brian!!

http://www.youtube.com/watch?v=t8307O2GYf8

http://www.youtube.com/watch?v=q-L_u6dsVBQ

Wednesday, September 3, 2008

New Journey

As I start my second week at the Ulman Cancer Fund, I am excited and energized about this new journey in my life. In my position as the Intake and Resource Coordinator, I will be taking phone calls and email contacts and providing information about Ulman and other resources that might be helpful to individuals or cancer professionals. I most recently worked as a business analyst and trainer at a financial firm, but did not feel rewarded in my job.

I was introduced to the Ulman Cancer Fund in March 2008 when I attended the One Night, One Fight event with Sheryl Crow. I volunteered at a few events when I learned about a new position. I was immediately inspired and felt called to work with young adults with cancer. As a three time cancer fighter I know first hand what it is like to try to cope with cancer along with the daily trials and tribulations of life.

My journey has been a long and interesting one. I am not fond of the words survivor or victim. I think calling myself a survivor is like tempting fate. Having Cancer is a never-ending war with lots of battles, each battle takes a winner and a loser; statistics might be like: cancer 2, patient 5. Who knows how the whole war will end….

Instead of victim - I prefer to think myself as a recipient of a gift. The word victim has a “lose” mentality. Granted the gift of cancer is not what you want and certainly one you can live without (no pun intended)! But think about all the gifts we get at Christmas, birthdays or other times in our lives that people give us (and something they think we may like it, but in reality it is awful) and our first thought is why me or how can we get rid of it right away.

Gifts are not always what we want and wars and battles are not fun, but we learn a lot from them.

Allison
Intake & Resource Coordinator

Wednesday, August 27, 2008

LIVESTRONG: A Podcast Series for Young Adults with Cancer

Hear the experiences and advice of peers — including many of you!

Each podcast is 5 – 7 minutes long and addresses the unique needs of young adults with cancer.

LIVESTRONG: A Podcast Series for Young Adults with Cancer relays important information about common physical, emotional and practical concerns.

Tuesday, August 26, 2008

In the FIght, Together.

“You hear and you forget. You see and you remember. You do and you understand.”
- Confucius


That saying has never been more fitting that what I witnessed this past week. I witnessed people all across the country (and Canada) joining hands in the fight against cancer. I’m always amazed at what can be accomplished when groups of people put their hearts and minds together and put the needs of others ahead of there own. From Canada to Maryland to Portland – we saw people making a sacrifice to help those in need. That’s what this organization is all about!

I had the pleasure of traveling to Halifax, Nova Scotia on Wednesday with our Founder Doug Ulman to attend a fundraiser event for the Tony Griffin Foundation . Tony Griffin is a world class hurler from Ireland who put his career on hold last year to ride his bike across Canada and Ireland to raise money to help fight cancer. Tony lost his father to lung cancer in 2005 (a non-smoker his entire life) and made a commitment to do something about it! On October 14, a crew of some 72 crazy Canadians will be riding their bikes from Nova Scotia to Austin, TX.

Brock Yetso, Todd McDonald & Doug Ulman

On Sunday I supported the 32 members of our Team FIGHT participating in the Aflac Iron Girl Columbia Triathlon. Many first timer’s on our team, everyone rose to the occasion and were declared Iron Girl’s as they crossed the finish line. We had college students, mothers, 1st timers, pro triathletes, bankers, oncology professionals - our team consisted of women from all walks of life coming together for one common bond – to raise money to support young adults fighting cancer.

Julie, Courtney & Katie - Team Fight members


For the third straight year, we had a group of 12 young adults participating in the Nike Hood to Coast Relay. Joining 12,000 other runners, Team Run Stonger ran 195 miles from the base of Mt. Hood to the Coast of Portland. Enduring 24 hours of aches, pains and sleeping in vans (I know first hand as I did this last year), our team raised over $15,000 to support young adults fighting cancer.

Thanks to all who made the sacrifices to help those in need – they ran that extra loop, cycled that additional mile, swam 800 meters longer. They did what they had to do to succeed in an event that would be both life changing for themselves while also impactful on the lives of others.

Brock Yetso, Executive Director

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