Friday, February 27, 2009

2x Cancer Survivor and Living Life!



Disbelief, loneliness, fear, anger, despair, faith, hope and love. These feelings were all too real when I first heard the words “you have a liver tumor” and later “it turned out to be cancer.” Not once, but twice. Sometimes I wonder which was worse: facing cancer for the first time or dealing with a recurrence. The recurrence is scarier because you know what is ahead of you and how tough it is going to be. But you have no other option but fight for your life and that’s exactly what I did.


During a routine checkup, a mass was spotted on my liver. I was only 28 years old and had never spent a night in a hospital. The idea of having aggressive surgery was scary enough and nothing could prepare me for what was coming ahead: twelve hours in the operating room, massive blood loss, flat-liners, five days in intensive care, fluids in my lungs, one month in the hospital and sessions of chemoembolization. For all my life I had always been so healthy and strong, what had gone wrong?

My first reaction was to look for people who had gone through the same problem and learn from them, the only issue was that they were nowhere to be found. Liver cancer is quite rare in the western world, especially among young women. I never felt so alone in my life. My family had no history of cancer and just to hear the word was like I had been given a death sentence. My parents were destroyed. How could this happen to us? My grandparents, my siblings, all our friends and family were shocked and grief-stricken, but eager to help and it was right there that my recovery began. I never felt so loved. Actually I had never imagined so many people cared so much about me. My hospital room was always full of people and flowers. People took turns taking care of me and rallied around me to show their love and support. It was then too that I found my faith, which had lain dormant for so long. I felt the presence of God in every step of the way. I also developed a very strong bond with other cancer patients that until recently did not share a lot in common with me. We felt as if we were members of a special group and became very close. I found out things about me that I never knew existed. I discovered an inner-strength and a resilience that I never knew I had and was proud of it. I embarked on a tough journey that proved to be very rewarding. Little by little I healed my body and my soul.

Time went by and I carried on with my life happier than ever before. While at that hospital I vowed never to take a day for granted and have kept my promise and counted my blessings ever since. All was well. I found the man of my dreams, I had the perfect fairytale wedding and was ready of the “happily ever after” part but that would have been too easy.

Five years after my surgery I was declared “cured” and felt as if a huge weight had been lifted off my shoulders. Life was good and I was healthy again. Until that hot December day, while I was visiting my family in Brazil for Christmas and decided to get scanned “just in case”. What started as another routine exam turned out to be the hardest day of my life. Five years later, when I was supposed to be “all clear,” the doctor spotted another tumor on my liver. What happened to “happily ever after?” What happened to the illusion that my life was going to be perfect after my struggle with cancer? Who told me the nightmare was over? I felt so stupid for believing that because of all I had been through, I had earned the right to be healthy and happy again. For some reason, I thought that after my battle with cancer I had this “get out of jail” wild card in my hands and nothing bad could ever happen to me again. But I was wrong, so wrong.

I will never forget what I felt in that cold dark hospital room. I felt as if my life was over again. I remember walking out of that room and looking at my father, my vision blurred by my tears. I can still see the look of disbelief on his face. “No, not again,” he said. “You’ll be OK.” I ran home to my husband who had been waiting for me all day. We both had tears in our eyes and hugged each other and cried out loud. We had been married for less than a year. We were planning to have our first baby and now what? My mother tried to fight her tears to no avail. None of us could believe “it” had stricken once more. We all had been down that road before but no one ever thought we would have to go through it again.

But we knew exactly what we had to do and we did it: CT scans, blood work, endless doctor’s appointments, desperate prayers. But if during my first surgery I kept much of my struggles to myself and my immediate family, this time I was decided to reach out for my family and friends and those who loved me. I knew I would need all the love and all the prayers I could get. I started writing as a way to come to terms with the latest news and was very surprised when people decided to use it to express their love and support. Since then, I became a firm believer in reaching out and opening up and telling your story. It worked miracles for me and that’s why I decided to do it again now.

My husband kept my friends up to date on my progress sending daily emails and even pictures. He also told me about all the wonderful messages people were sending my way. How much people cared about me, how much they were praying for me and sending their best wishes. I remember very vividly, when I was taken to that operating room I felt strangely calm, as if someone was guiding me all the way. At that moment I knew all our prayers had been answered and I was going to be just fine.

The surgery was long and complicated but my recovery was nothing short of a miracle. The tumor was removed after six or seven hours and in just a day or so I left the ICU. Once I got to my room, I felt home. I felt well and I kept picturing myself walking out of that hospital on my own. I would close my eyes and see myself walking out of there on my way home. I imagined what I would wear, what kind of day it was going to be and who would be there to pick me up. Just two days after checking into the room I was released. And exactly as I had imagined, I left that hospital, where it all had started more than five years ago, walking on my own and a step closer to my complete cure.

It’s been almost five months since my last surgery and life is back to normal. As unbelievable as it would seem just a few months ago, I feel that I can have dreams again. More than that, I feel empowered to know that they can and they will come true. I feel blessed and I feel loved. I feel strong and happy. And above it all, I know that I have a long road ahead. I want to use my story to show others that there is life after a cancer diagnosis and that this life can be much more fulfilling and interesting than the one we had before.

Dani Duran is a two time liver cancer survivor

Monday, February 23, 2009

FIGHTING for Desiree


Don't ask yourself what the world needs; ask yourself what makes you come alive. And then go and do that. Because what the world needs is people who have come alive. ~Harold Whitman

I am sitting in Houston, TX at MD Anderson with my dear friend Desiree who has relapsed a second time with lymphoma. The first time she fought was two years ago when I met her beautiful face. We were fast friends as we had so much in common. She has been a close friend, a fellow triathlete and my running buddy for 2 years. Desiree and I signed up for Ironman AZ this November to celebrate her victory over cancer….she will not be able to race due to the relapse. As well, she has 3 beautiful children. Ages 6,8 and 10…… I am sitting in the waiting room as she goes in to receive a 4 hour transfusion. Even though MD Anderson does a lot of things right…being in a hospital for JUST cancer patients will never feel ok to me. It makes it real, it brings it all back home.

I wanted to send word to your athletes. The injustice that cancer serves is not fair. And I am angry. I have observed since 9 AM and watched the walks of all those facing treatment, good news, bad news, new protocol….Cancer does not discriminate. Where I sit right now there are young and old, black, white & asian, upper class and lower class. Cancer doesn’t care that the economy is tanking or that we are trying to figure out a new health care system. Cancer doesn’t care if you have 3 children or hopes of having children one day. As active as it is…it has no REAL face. It carries the face of way too many people. There is no sense in who or why it chooses and that makes me angry. Nobody deserves this. As I walked around today and saw that MD Anderson has to add 600 more beds, my stomach dropped. I mean…they ONLY serve cancer patients, have an entire FLOOR for lymphoma and they need 600 more beds??? Apparently there is a waiting list, which is why I bring my friend down for one day (3 hour drive one way) because a bed overnight is not an option right now.

I have been around cancer for about 6 years now. My brother, my grandfather, myself, my Dad….many close friends and those from afar and I won’t ever get used to it. I don’t want to. For those of your athletes that might need that extra push out the door to their Finish Line in May….maybe this email will help. My friend Desiree will not be able to train or run for a long time as the road ahead of her is quite long. Will you get out of bed and do it for her? Will you get out of bed, train your asses off and hope for hospitals with empty beds?

I would love that.


Colleen

Thursday, February 19, 2009

“The Six Degrees of Cancer”



Cancer seems to be everywhere. Our story is the same in that regard. But what amazes us the most is the connection we have with so many people in our lives who have been effected by this epidemic. If you are familiar with “The Six Degrees of Kevin Bacon”, then you know how this story goes. To explain how we became involved with the Ulman Cancer Fund and Team Fight – we must travel back 15 years.

McCulloch Family
In 1990, Winnie McCulloch (Suzy’s mother) was diagnosed with Breast Cancer. Short there after, she received a mastectomy and further treatment. Winnie’s condition improved with time and she has been in remission for the past 19 years. Despite over coming this, the McCulloch family was burdened with the news of Chuck McCulloch’s (Suzy’s father) diagnosis of Prostate Cancer in 2004. Fortunately, his diagnosis was made early and Chuck underwent sufficient treatment to remain cancer free today.

Serpico Family
In 2002, Sally Serpico (Danny’s mother) was diagnosis with Ovarian Cancer. Despite her best efforts to fight this cancer, Sally’s battle ended a few weeks before Thanksgiving in 2004. Sally is remembered by her loving husband (Dennis) and 4 children.

Bob Gross
Suzy met Bob in 1997 while taking spinning and step classes at the Columbia Association gyms. Suzy is now the instructor of spin classes that Bob takes and makes music for . Bob has been a great friend and model peer for Suzy through out the years. In 2004, Bob had a seizure in the middle of cycle class (not Suzy’s) and underwent some testing. It wasn’t long before Bob was diagnosis with a Brain Tumor. Today, Bob is undergoing constant treatment and still attends spinning classes on a regular basis.

Cynthia Roth
We all know that the rave of the spinning classes at the Columbia Association is credited to Suzy McCulloch. So when Bob Gross began taking spinning classes, Cynthia Roth (Bob’s mother) joined him on occasion. As you guessed it, Cynthia’s story is very much the same as the previous. Unfortunately, Cynthia lost her husband to Skin Cancer about 7 years ago. Upon diagnosis, he was given weeks to live and Cynthia watched her marriage end at the mercy of this disease. We can only imagine how she must have felt when she was notified that her son (Bob) was diagnosis with Brain Cancer.

Six Degrees
Now that you have the foundational information – we can begin to put the circle together. Shortly after Sally Serpico passed away, Dennis (Danny’s father) began taking spinning classes at the Columbia Association gyms. It wasn’t long before Dennis and Cynthia met each other. Having a lot in common including a traumatic loss of a spouse, they soon after began dating and have been together since then. Cynthia and Bob have become a big part of the Serpico family. One might speculate that if Suzy hadn’t met Bob in spin class…..Cynthia might not have taking spinning….and she might not have met Dennis. Furthermore, Danny and Suzy might not have met each other if Danny’s father, Dennis, had not persuaded him to take a spin class in 2006. Finally, Suzy’s mother, Winnie, had the pleasure of teaching Brock Yetso when he was in 13yrs old – thus completing our “The Six Degrees of Cancer” and connecting us to the Ulman Cancer Fund.

When Brock and Brian Satola approached us about helping out with Team Fight, we thought this to be a no-brainer. We have seen what Cancer can do and jumped at the opportunity to support this cause. It has been our pleasure to be apart of this program and encourage everyone to participate.

by Danny Serpico and Suzy McCulloch
Team Fight Trainers

Wednesday, February 11, 2009

Anne's Perspective on the Amgen Tour of California


While I wouldn’t have chosen to join the club of cancer survivors, there are certainly perks to being a card-carrying member. What survivor hasn’t pulled out the old cancer card to get out of a traffic ticket (check), to convince your family to do something ridiculous they otherwise wouldn’t have done (check), to get out of having to do something you really didn’t want to do but have no other legitimate excuse (check), or to impress someone with your super human cancer fighting feats (check). In addition to these little perks, every now and then my cancer card gives me an opportunity of a lifetime. From February 14-23 I will be attending, for the 3rd year in a row, the Amgen Tour of California. That’s 750 miles across the state, from Sacramento to Escondido and everywhere in between. Not only will I get to experience every city along the route, but I also get to watch all of the cyclists just feet from the finish line, meet cancer survivors along the way, and travel with all of the teams full of good looking men. Nope, it never gets old.

Several years after finishing treatment for Ewing’s Sarcoma I decided to become a professional cancer advocate by joining the staff of the National Coalition for Cancer Survivorship (NCCS) and the UCF board of directors, which have both led to amazing perks. In partnership with several other leading cancer organizations, NCCS participates in the Breakaway from Cancer Initiative, which is a complementary component of Amgen’s sponsorship of the Tour of California. The initiative was created to raise awareness and funds to support valuable services and programs, provided free of charge, that help people living with cancer. Much like the cyclists working together, every survivor needs a team to go up those mountains, enjoy the view on the way down, and pull us along when we need it. As the NCCS representative, I am fortunate to staff a booth at each stage and provide people with information and resources. Oh, and did I mention I’ll be just feet from the finish line?

My first introduction to cycling came when I joined UCF’s Team Fight for the program’s kick-off season. Early in 2007 I signed up for the Iron Girl Triathlon to celebrate my 10th cancerversary and raise money for UCF. It’s no 7 Tour de France’s, but it was my first competition since I was diagnosed and my first-ever triathlon. So after I signed up I did a lot training, and by training I mean thinking about and putting off getting and riding a bike. Sure, I’d caught a little cycling on TV flipping through channels, and I lived in Austin when Lance started his amazing winning streak, but I didn’t quite understand all those cycling enthusiasts. Spandex? Really? When I got to my first Tour of California in February 2007 I finally understood what the buzz was all about, though I renewed my personal resolution to avoid spandex.

First of all, who knew cycling was a team sport? I had no clue how much each teammate was helping the leader. Nor did I ever think about what happens when cyclists have to go to the bathroom or eat. Or how they fix problems with their bikes. Or what they do each night after the competition (massages). While my first Iron Girl Triathlon did not involve any bathroom breaks, moving lunch bag grabs, or bike malfunctions, I like to pretend my race was just like the Tour, except even harder because I did 2 additional sports. I had fans and my teammates cheering me on (gotta love the race bibs with your name), I got a medal when I was done, and people kept asking me if I’d won – and I kept saying I did. Exactly the same.

This year the Tour should be even more exciting, especially since Lance will be riding for the first time. Things will be crazy: we will GET IT ON LIKE DONKEY KONG; there will be PANDEMONIUM IN THE STREETS OF SANTA ROSA; and the cowbells will be deafening when there’s ONE TO GO ONE TO GO ONE TO GO ONE TO GO ONE TO GO! I leave for my 10-day cycling extravaganza on Friday and can’t wait. Stay tuned for some updates from the road – I’ll make sure to take pictures from, yup, the finish line. And maybe I can get another one with McDreamy like this one from 2007.


Anne
UCF Board Member

Join Joel in the Fight!

I was introduced to the Ulman Cancer Fund last year after my wife participated in the Aflac Iron Girl Las Vegas Triathlon. On February 26th, just two days after our 12th wedding anniversary, she was diagnosed with Stage 1 cervical cancer and learned more about UCF after the event. Upon returning home, she began 6 weeks of radiation therapy, rather than undergoing a hysterectomy. This allowed her to continue to train and even post a 6:10 in the Florida 70.3 at Disney in early May. To me, this was simply amazing. I had trained for months and pulled out a 5:50, and I didn’t have as much as a sniffle.

Over Memorial Day weekend, she spent 3 days sequestered in a hospital room for a healthy dose of localized radiation. That was a pretty miserable experience for her and I could see her for no more than 15 minutes per day. However, the session went well and she’s been in remission ever since.

It’s almost a year later and she’s competed in numerous events, including a few half marathons and the New York City Marathon last November. Now, in just 10 weeks, she’ll compete in her first Boston Marathon.

Later this year (09/09/09), I’ll turn 40 and as many people do when they get older, they do something crazy. I plan to run 40 miles . . . in one day. Along the way, I’d like to join Team Fight to raise awareness and money for The Ulman Cancer Fund for Young Adults as a way to say thanks, and to ensure UCF is there for us or others in the future. I’ve already got interest from many friends to run with me and to contribute to my selected charities. I believe that helping others is an important part of who we are.

For more information on the event, to be held in the Tampa Bay area on September, please visit www.4040run.com. At the site, you can sign up to run, to provide run day support and to make a contribution to UCF.

Thanks,
Joel

Monday, February 2, 2009

Why Liz Fights-



I am 39 years old and I have breast cancer. I am five months into my battle, and I have been changed for the better.

I am the mother of four wonderful children, ages 9, 8, 4 and 3. My husband, Marc, is my best friend, my cheerleader, my love. Sadly, my story may not be unique, since breast cancer affects so many women. But, sharing my thoughts and experiences with others helps me to gain strength in fighting this terrible disease. Maybe I can in some way inspire those who are fighting this alongside me.
I am learning that the diagnosis of breast cancer enters you into a very special sisterhood — one that I may not have volunteered to join, but one that I am learning to look at as a gift. I am new to this disease, but I am a warrior, a fighter, ready to win the battle! My life has changed so much over the past five months, but I have to say, I am thankful for my family, my friends and the strength that God has given me. I want to make this horrible experience a positive one, and I am determined to see the good in this journey. I am ready to go and kick some breast-cancer ass!

I would like to think that I am an educated woman, especially in the area of women's health. My father is an ob/gyn, and my mother is a registered nurse. Together, they ran a family-style medical practice, taking care of women in West Palm Beach for more than 30 years.
My parents' love of medicine and obstetrics definitely rubbed off on me. After working in the labor and delivery unit as a registered nurse for many years, I returned to school and became an Advanced Registered Nurse Practitioner, specializing in women's health. I provided obstetrical and gynecological care in a private physician's office, and became quite familiar with the breast exam. Even after I "retired" to stay home and take care of our four kids, I religiously did my own self-breast exams once a month.

It was during one of these exams in the shower that I felt a large, hard lump in my left breast. The lump felt about the size of a walnut. When I looked at it in the mirror, I was shocked. I could see it creating a bump over my nipple. How could I have not noticed this sooner? I reassured myself that it must be a fluid-filled cyst. Surely, a mass this large was fluid-filled.
I didn't panic because I remembered that many breast cancer tumors are pea-sized, hard lumps found near the arm pit area. Unable to get an appointment to have my lump evaluated for over a week, I called my brother-in-law, Bill McGarry, an oncologist. He suggested I come to Vero Beach (where he practices) for a mammogram.

I'm sure he never thought the following day he would have to tell me I had cancer.
I was diagnosed with Stage 2 invasive carcinoma and ductal carcinoma in situ in both breasts. My tumors range in size from 2 cm to almost 5 cm. These are large, aggressive, fast-growing tumors.

I had a PET scan to determine if the cancer had spread to other parts of my body. My husband and I had been prepared for the worst news. I had an enlarged lymph node in my armpit, and so I knew there was a good chance that the cancer was outside of my breasts.

The night before my PET scan, I woke up at 3:30 a.m. and couldn't go back to sleep. I started a journal. As I wrote my feelings down, I paused to pray. As a practicing Catholic, I have always had prayer in my life. But I felt unsure about how I was supposed to pray. I didn't want to question God's plan for me, but I also didn't want to ask for a miracle. For the first time in my life, I didn't know how to talk to God.





After a long while, I felt a sense of acceptance, and peace. God had done the speaking for me.
A few days after my PET scan, my brother-in-law called with the most positive news I had heard in the previous four days: My cancer had not spread beyond my breasts.

This is when I allowed myself to completely open up and cry. I was not going to leave my babies anytime soon! I told myself all those things you hear people say when they are given a second chance: "I am going to live my life in a new, improved way!" and "I promise to be a better person."
But I mean it! Life to me now is new, and I view things in such a different way. The whining of my 3-year-old son doesn't irritate me anymore, I am thrilled to get my daughter another pencil after she has broken three, I actually enjoy helping my son with his homework and the way my husband clears his throat when he falls asleep doesn't irritate me anymore! All those trivial things I used to worry about are just ... trivial! In a way, this diagnosis has been a gift.
Since my tumors were too large to perform a mastectomy immediately, I am receiving chemotherapy for six months in order to shrink them. December was a rough month for me. I was hospitalized for five days with a fever and low white-blood-cell count. Thankfully, I was sent home before Christmas, and I was able to enjoy my time at home.

In March, I'll have a double mastectomy, followed by radiation. I'll have reconstructive surgery six months to a year after the radiation.

Since my maternal grandmother had breast cancer in her late 70s, and two of my cousins in their 40s were diagnosed with breast cancer, I had the BRCA (breast cancer gene) test done. My results were negative, so I can't help but ask 'Why me?' Maybe someday I will fully understand why.

So, here I am, battling these cells which would like to take over my body. No way! I am not going to fight lying down! I now have chemotherapy infusions every three weeks, which generally puts me in bed for 7-10 days. But on the good days, I am jogging or still trying to hit a tennis ball or at the park with the kids. I am pushing myself to look into the future. I am trying to laugh as my hair sheds on the couch, and as my eyelashes land on my cheeks. I am teaching my children that no matter what you are faced with, there is good in every situation.

Some days I find it hard to stay as upbeat as I was a few months ago, but all I have to do is look at my four children and husband, and I am immediately inspired to snap out of it. So, I am trying to continue my fight looking ahead, looking on the bright side and looking forward to the day that I can say, "I am cured."

I have already seen the good that has come from my diagnosis of breast cancer. Strangers sending e-mails and well-wishes, friends going to church after years away from God, reconnecting with extended family members, sharing a smile with other cancer patients in the chemo room. These are the little things that I appreciate now. And to me, these are all gifts.



Liz Yavinsky

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