Monday, March 30, 2009

Thank You from the Ulman Cancer Fund for Young Adults

Thank you to everyone who attended and supported our Annual Gala "Eleven-The Event" with Vern Yip. You are truly making a difference and helping to raise awareness and funds in support of Young Adults affected by cancer and their loved ones.

Enjoy the Slideshow!

video

Thank you!

The Ulman Cancer Fund for Young Adults Staff

Friday, March 27, 2009

Make a Choice Make a Difference

One morning in August of 2001, I was taking a shower just like any other morning. Except for on that morning, I discovered a lump as I brushed soap away from my skin. Less than a year prior I had a routine baseline mammogram which was negative, so finding a lump just under the surface of my skin was somewhat disconcerting. By the time the subsequent examinations and tests were completed, it was just a few days away from Christmas. My surgeon called for me to come to her office so that she could discuss the test results with me. I was 36 and had no family history of breast cancer. That night I was told that I had an aggressive form of breast cancer. As I sat there in shock listening to her go over the pathology report and describe the next steps, I remember her words “this doesn’t have to be a death sentence”.

As part of the staging process, patients will have diagnostic tests done to see whether the cancer has spread to other areas of the body. While waiting for my bone scan, I sat in the patient waiting area along with other cancer patients. One woman looked over at me and asked what I was having done. She openly told me that she was stage 4 and this was her third time being diagnosed with breast cancer. She told me “not to be afraid and look at this experience as a gift”. At some point in her treatment she had a bi-lateral mastectomy without reconstruction. I know this because she told me as well as showed me, right there in the waiting room. Her willingness to be herself without shame or embarrassment helped me understand that beauty was more than skin deep. Her beauty came from within. Meeting her gave me a sense of confidence and hope without fear because knowing all that she had been through; she was still fighting the battle and doing it with grace and without fear.

Since the initial diagnoses, I have had 8 surgeries, 24 weeks of chemoimmunotherapy, 7 weeks of daily radiation, 5 days of in-patient hospital care, adjunct hormonal therapy, and multiple diagnostic tests to determine the staging of the cancer. Why so many surgeries? Well, in November of 2003 I had a recurrence. Same breast, same cancer. It had survived surgery, chemotherapy, and radiation. Specialists debated whether the cancer had metastasized to the skin just above the incision area. One specialist thought that within a year the cancer would be somewhere else in my body. Hearing that was probably the lowest moment in my life. I remember walking to my car, thinking that I was going to die. That thought was quickly replaced with another thought, “I can believe that I am dying and act like it or believe that I am alive”. Living is a choice and from that day forward, I decided to make a choice and live.

Choosing to live doesn’t necessarily mean that life is without challenges. There were other challenges associated with having breast cancer. Some of these challenges included finding relevant information to make informed decisions about treatment options for young women with breast cancer, finding other young women who had gone through or were going through similar experiences, juggling the demands of working full-time with getting well, and dealing with the long-term side effects of treatment, such as hypothyroidism, memory issues, early onset of menopause, and the physical appearance of scarring from a bilateral mastectomy with reconstructive surgery.

This experience has shown me that being a young, working woman with breast cancer presents unique challenges and emotional hurdles. Looking back on this experience, I sometimes wonder how it compares with that of other working women my age who have gone through similar ordeals with breast cancer. I am also curiosity as to whether or not other young, working women with breast cancer are treated in the same fashion as their older counterparts.

Despite my challenges I look at each day as a gift. I have completed two marathons since my original diagnosis, will be training for the Iron Girl Triathlon coming up August 2009 in support of the Ulman Foundation, and I am currently pursuing my PhD. My curiosity about the experiences of other young, working women with breast cancer is driving my dissertation topic. It is through the exploration of these experiences that this study will examine how cancer treatment centers cared for and served the needs of these women with breast cancer.

I hope that sharing my experience makes a difference, just like the women in the waiting room made a difference to me. If you would also like to make a difference by participating in my study, I am looking for 12-16 women who were diagnosed with breast cancer before the age of 40 and who were also working at the time of diagnosis to participate in my study. During the spring of 2009, I will be conducting interviews with these women. The names of those participating in the study will remain confidential. As a participant in this study, you will be asked to take part in a one-hour recorded interview conducted by me. The interview will be scheduled at your convenience and at your location of choice, either face-to-face or over the phone. Each participant will be required to sign an informed consent form, that must be returned to me prior to conducting the interview.

If you fit this description and would like to be a participant of this study, please email me at bcsurvivornetwork@comcast.net. I would forward to seeing you at an upcoming Ulman Foundation event.

Most Sincerely,
Joni Dowling

Tuesday, March 24, 2009

How Lucky is Nancy Arthur!?!


Very Lucky! I’m Nancy Arthur, 31year old female. Around this time last year, one evening, out of the blue I had a couple of seizures and was rushed to the hospital to discover that I had a 5cm, Stage III, Anaplastic Astrocytoma, aka- brain tumor, in the right frontal lobe of my brain. Being in the medical profession, or any profession for that matter, I knew this wasn’t good. That evening I was transferred to John’s Hopkins Hospital and the following day I was having major brain surgery! My nuero-surgeon, Dr. Quinones, was extremely positive and passionate about his job. You need that when they are going to work on your main computer of your body.

After my craniotomy, it took awhile for my left side to come back since the tumor was near the part of the brain that controls my left side motor skills, personality, decision making, etc... After I left Hopkins I was sent straight to an Inpatient Rehab Hospital for a week, where I had intense rehab in physical, occupational, and speech therapy. I had to relearn how to do normal daily activities, such as, walking, talking, bathing, etc... I remember thinking… that I knew what word I wanted to say but just couldn’t think of it. It was very frustrating. My brain was so swollen due to surgery. Once I repeatedly connected the neurons, they made tracks in my brain that made things become like second nature, like such a simple act of opening and closing my hand. The simple things that people take for granted, everyday. With effort and pure determination I worked at becoming the same Nancy I used to be.

Once I returned home from the inpatient rehab facility, I continued to do outpatient rehab until I was strong enough to start my treatment. I did 6 ½ weeks of radiation therapy with an oral chemo. Then I took a break for my body to build up strength. The second phase of my treatment was 6 rounds of oral chemotherapy. I just finished my 6th and final round on March 1st of 2009!! I couldn’t have done so well without the support of my loving family, friends, and strangers. I so thankful that I had all the positive energy pointed my way to allow me to beat this disease.

This is why I feel so lucky? It was not an easy recovery but I’m so glad this happen to me (in a weird way). It definitely, showed me how strong I was not to give up and keep on fighting. If I can do this, I can do anything! Also, it taught me never ever take anything for granted. Since this has happened to me my relationships are so much stronger with everyone. It makes you look at things in a different light. Always, look at the bright side of things; somebody has it worse than you. Life is full of uncertainty. Why dwell on what you can’t do and when you can dwell on what you can do! Positive thinking goes along way. I truly believe that if you have a positive outlook you can heal and live so much better!
Nancy Arthur
Young Adult Cancer Survivor

Thursday, March 19, 2009

Jessica's Story


I was 28 when I was diagnosed with breast cancer in December 2006. I had a routine breast exam as part of my annual check-up. Although she told me that I had nothing to worry about, my primary care physician recommended a follow-up ultrasound and mammogram.

As it turned out, I had a lot to worry about. Two days after Christmas I learned my biopsy results: cancer. Less than two months later, I received another blow. The pathology report from my mastectomy indicated invasive ductal carcinoma. Not only had I lost my breast but I was going to lose my hair as well. 17 days after my first chemotherapy infusion (which landed me back in the hospital because I got so ill), my long straight hair started to fall out in clumps and my now-husband, Michael, found me crying on the bathroom floor.

But we pulled it together and didn’t miss a beat. We drove to a salon that sees women undergoing chemotherapy and got our heads shaved bald. The process was strangely empowering at a time when I had little control over anything else. From that day forward, at least outside the office, my preferred head covering was nothing. . . just my shiny bald head.

In the week before my last infusion in June 2007, two things happened. Michael proposed to me, and I accepted. And, along with 8 supportive friends, I walked the Komen Race for the Cure to celebrate the end of my treatment and our successful efforts to raise over $20,000 to support Komen. I was proud of my efforts, but all of those signs on race day – “in loving memory,” “we miss you mom” – were too much for me. I tried a support group, but the stories of my fellow patients and survivors’ diagnoses, treatments and prognoses scared and overwhelmed me. The support group setting was right for some people but not for me.

Six months later, I found what I needed when I joined the cancer to 5K program, a UCF-supported training program that helps young adult cancer survivors prepare for a 5k road race. My fellow runners and I shared a struggle and a goal but we didn’t talk much about cancer while we were running. We talked about life, and work, and weekend plans. With them, I ran a 5k and then a 7-miler, and today, I am training for a half marathon with Team in Training. I have taken control of my physical fitness, and along with my improved physical health have come the confidence and emotional security that I needed.

I also learned that I didn’t want to avoid cancer patients and survivors as I initially thought. I simply wanted their companionship in a different setting. With that in mind, I wrote to UCF in the hopes that I could find another “quiet survivor.” UCF and Imerman Angels paired me with a breast cancer survivor in Chicago who is my age, with my same diagnosis and treatment, who has a professional career, and who is planning a wedding to the man who saw her through diagnosis and treatment. We email each other our stories and together, we are dedicated to living healthy and happy post-cancer lives.

But I will admit that a breast cancer diagnosis at 28 was shattering. Even for a fairly confident woman whose notions of self worth are not wrapped up in body image, losing a breast was traumatic. More than at any other age, I wanted to feel and look pretty. But after my surgery, my clothes didn’t fit quite right; they pulled to one side. I became self-conscious in the gym locker room. I felt that people on the street could look at me and tell that I was disfigured under my layers of clothing, or that they could see that my implant was larger than my natural breast. I would glance around a crowded bar or restaurant and think to myself: I’m all alone. These people have no idea what I’ve been through.

Because of my age, I also confronted issues of fertility. My doctors couldn’t tell me whether I would be able to have children after chemotherapy (I have since met many woman who have conceived after treatment). Although I didn’t want children at the time, I also didn’t want cancer to make this important life decision for me. So I consulted a fertility specialist about harvesting eggs. But in the end, I couldn’t bear the thought of injecting myself with the very hormones that fueled the growth of my hormone-receptive cancer. And, I couldn’t fathom delaying my chemotherapy to do it. So, I decided to take the risk that I might not be able to naturally or otherwise conceive. Michael was fully supportive, and I am thankful for that.

At a time in my life when everything should have been moving forward with an eye toward the future, my life plans came to a screaming halt. But despite cancer, Michael and I married in September, and I turned 31 in February.

My hopes for my 31st year? (1) no more cancer, (2) complete a sprint-distance triathlon.
Jessica Tanner
Breast Cancer Survivor

Monday, March 16, 2009

Eleven-THE EVENT Experience

My first annual UCF event was a fabulous experience! Last week I attended 11, the Event with my girlfriends, two of whom are also cancer survivors. It was a great night, and I was honored to be chosen as a survivor guest. The themed chairs were incredible to look at- you saw into the heart of a survivor, caregiver, or supporter- and how cancer personally effected them. The chairs were full of color, hope, uniqueness, time, and energy.

There was a special chair for all survivors to sign- and that meant a lot to Nancy, Shannon and me. I always am so encouraged and in awe of how hard UCF works for young adult cancer survivors.

Cancer Survivors: Sylvia (5 years), Shannon (2 years) & Nancy, (1year).

While in the main program in the auditorium it was amazing to look around and see all of the support there was. It's quite an honor and encourages me to give back and help for those who have helped me on my cancer journey.

Listening to a former American Idol contestant Diana Degarmo was awesome- she lit up the stage. Seeing all of the honorees and hearing what they are doing for UCF and the cancer community was amazing- it was an honor to be among them! And Vern Yip had a beautiful tribute to his mother, and the premier of his Deserving Design episode featuring a UCF Scholarship winner (and major butt kicker with cancer!) was quite a treat.

The night was awesome, and I can't wait till 12- the event! :)

Sylvia Donovan
Hodgkin’s Lymphoma Survivor

Wednesday, March 11, 2009

Designing A Hopeful Community for Young Adults Fighting Cancer




On Monday, we celebrated an exciting milestone in our organization’s history. In addition to turning eleven years old and reflecting on many years of service to the young adult cancer community, this years event also marked the organizations renewed commitment to our local community – Howard County and the Mid-Atlantic Region. One year into implementing a five year strategic plan, the UCF has made a strategic decision to allocate the majority of its organizational resources towards programs and projects that impact the local community. By scaling back our involvement in several national initiatives and focusing on a few core programs impacting the Mid-Atlantic Region, the UCF believes it will make a more profound impact on the lives of the young adults and families it reaches. In addition, a more focused organization will enable the UCF to develop model programs that can be evaluated and replicated in other communities and institutions across the country.

Eleven was a huge success and paid tribute to five community partners that have helped us get to where we are and will continue to be instrumental in our future work at the community level. We honored the following groups and individuals for their outstanding commitment to the UCF and young adults fighting cancer; our Founders Award to HGTV’s Vern Yip, our Partner Award to Howard County General Hospital: A Member of Johns Hopkins Medicine, our Young Adult “Fight” Award to cancer survivor Holly Gannoe and her Cancer to 5K program, our Volunteer Award to Felix Scherzinger & Eden Stotsky for their work on Long After Cancer, our Hope Award to Dr. Kevin Cullen of University of Maryland Greenebaum Cancer Center.

The event also featured inspiring remarks HGTV host and UCF Founders Award recipient, Vern Yip, along with an advanced screening of an episode of Deserving Design which featured the story of young adult cancer survivor & UCF Scholarship recipient Christina Gavegnano.

Check out some exciting activities around Eleven – THE EVENT

Vern’s visit University of Maryland Greenebaum Cancer Center – http://www.umgcc.org/patient_info/ulman_nav.htm
Vern’s visit to Howard Community College – http://www.explorehoward.com/events-entertainment/16386/yip-finds-deserving-designs-hcc-event/

Brock Yetso
Executive Director

Wednesday, March 4, 2009

“Behind the Scenes” with HGTV’s Vern Yip – Sneak Preview of UCF Deserving Design Episode

In early November 2009, I traveled to Atlanta, GA to be on the set of HGTV’s Deserving Design with Vern Yip. Click here for a behind the scenes look of the making of a very special Deserving Design episode that will feature UCF Scholarship Winner and cancer survivor Christina Gavegnano.

On Monday March 9, 2009, UCF will host Eleven – THE EVENT at the Horowitz Performing Arts Center where we will have an ADVANCED SCREENING of this Special Deserving Design episode.

To learn more or purchase tickets for Eleven – THE EVENT
visit www.ulmanfund.org/11theevent, email Debbie@ulmanfund.org or call 410.964.0202 ext. 103

Brock Yetso
UCF Executive Director

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