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 fiancĂ© 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 fiancĂ© 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

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