BRAIN CANCER at 22 years old?

BRAIN CANCER at 22 years old? Does this really happen? Not only does it happen it happened to me. March, 2004 my world came to a screeching halt. I began having severe pain on the back left side of my head and became increasingly dizzy. After being misdiagnosed 3 times, I had an MRI that showed the orange sized tumor rapidly growing on the back of my brain.

I was immediately rushed to the hospital. On Sunday, May 21st, 2004 I had a successful 7 ½ hour brain surgery removing the entire tumor. I was in the Intensive Care Unit for 2 weeks following surgery. Doctors told me there was a less than 5% chance the tumor was cancerous. A week and a half later I was given the devastating news. I had cancer!

Because the type of cancer I had, Medulloblastoma, is most commonly found in children I was referred to a doctor at Children’s Hospital in Washington, D.C. There, I was treated by the guru of Medulloblastoma’s and a wonderful team of Pediatric Oncologists. Along with my neurosurgeon, they are the reason I am alive and doing so well today. I was given a plan of action and began cranial/spinal radiation shortly there after. Radiation is the most important key in fighting this type of cancer in adults, but it took a huge toll on my body. I was nauseous and tired all of the time. I lost all of my hair. I stayed with my parents during treatment and visited my husband of 1 ½ years on the weekends. We had just moved into our new house a week prior to my surgery and I was always happy to go home!

Radiation therapy does not take long (about a minute). For me, that minute was pure hell and seemed like forever. I would lie on my stomach with my head clamped into a device that should only be used on criminals as a form of torture. Three weeks into radiation I developed appendicitis and had surgery to remove my appendix. As a result, this delayed radiation a week and sent my doctor’s into a tailspin. Radiation is never supposed to be interrupted…especially for an entire week. Chemotherapy was an option, but, to me, the risks outweighed the benefits. I declined chemo treatment.

The vast amount of radiation I received has caused problems that I still battle to this day. About three years after treatment was completed I developed cataracts in both eyes. They grew very quickly, so I had surgery to remove them. The spinal radiation caused my stomach to become paralyzed, so this makes it very hard for me to digest food. I take medicine that helps, but I have to be very careful with what I eat. To me, these are just minor problems that are under control and I’m thankful to live a relatively “normal” life.

I will be five years cancer free this May! I was told after my treatment that I would never have children. My son turns 2 in June. I’ve learned that doctors are great in many ways, but they do not know everything. Having an unwavering faith, supportive husband and family is the reason I am as strong as I am today. I am truly lucky to be alive and I am thankful that I’m able to be a part of an organization as wonderful as the Ulman Cancer Fund. I felt very isolated going through cancer at 22 years old. As a result, my goal is to work with the Ulman Cancer Fund to be a friend and advocate for as many young adult cancer patients and survivors as I can.

Kelly Ruszala

Young Adult Cancer Survivor

"Help One Person"

Best said by Doug Ulman and echoed in a recent blog by Laurel Wassner, “if he could just inspire or help one person in some way, then he'd be happy.” As I reflect on Young Adult Cancer Awareness week, I am trying to understand how I “fit” into the bigger picture. I thankfully have not had to personally fight this dreaded disease, but have met many amazing people in the last few months that stare cancer in the face every day and every minute. I wonder how I would fight. How I would deal with cancer?
I am truly inspired by those I have met who are fighting, each in their own way. I have made some great friendships that have truly opened my eyes as to what living really is about. When I embarked on this new journey with the Ulman Cancer Fund, I truly had no idea what I was getting into other than I knew it “felt” right and I am still not sure what that means.
We are making great progress here in these very tough economic times. We are forging ahead with a renewed strength and focus on our mission. New relationships are being built and old relationships are being strengthened. New faces have been brought on board and familiar faces have stepped up to new levels.
So, where does Brian fit in? HERE! As Doug and Laurel reminded me, if I can make one person’s life a little better, a little easier, isn’t that what it is all about? As I was sitting with a new friend yesterday, who happens to be a survivor, watching her 4 month old smiling and bouncing on her leg, I realized that I am seeing things in a new light. Thanks Sylvia! I am trying not to take for granted what I have in my life. A great family and great friends are not givens in everyone’s life. I am thankful for what I have been blessed to have and appreciate it more than ever.
As time moves on in this journey, I can’t imagine what is in store for the future, but I promise you I will do my best to help more people and have a positive impact in the community in which my daughters will grow up.
So I look to the fighters and I smile. I look at the picture above of my friend Laurel who is always smiling as she competes in events that challenge her physical ability. I want to thank them all for helping me understand where I fit in!
Be good and smile!
Brian
UCF Assistant Director

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!

Thank you!

The Ulman Cancer Fund for Young Adults Staff

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

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