Meet Broadway Star and Cancer Support Community Supporter, Stephanie J. Block

Stephanie J. BlockHave you ever wanted to see Broadway star Stephanie J. Block perform? Stephanie J. Block, star of such productions as Wicked and Anything Goes, will be performing at the Cancer Support Community’s Spring Celebration on April 24th in New York City, and we want to make sure you have a ticket!

CSC recently had the chance to interview Stephanie about her upcoming performance and connection to cancer and the Cancer Support Community.

What is your connection to cancer?

The effects of cancer have touched me in profound ways. The most recent was a dear family friend who had fought her first battle with breast cancer with so much grace, humor and strength. When the cancer returned last year, the battle took her life. She was a strong, vibrant and impressive woman… a wife, a mother, a new grandmother and a teacher who was loved by so many, including me and my husband. Again, this is just the most recent account of a life taken too soon.

I want to mention an incredible man and a master costume designer, Mr. Martin Pakledinaz. It was brain cancer that took Marty. He created and designed and inspired until the last moments of his life. I miss him deeply.

I, myself, had a scare with cervical cancer. Back in 2004 a severe case of cervical dysplasia led my doctors to use the word “cancer”. I was terrified. But because of very early detection and wonderfully proactive physicians and specialists, I was clean after the first surgery. After years of doctor visits and check-ups and multiple cervical scrapings (more than I care to count), I was deemed “unextraordinary”. I found such relief in a word that seemed so derogatory before that experience.

Sadly, I could continue with other names, stories, cherished lives of loved ones taken by this pestilence, but instead I will remember them fondly and continue to work/pray for a cure.

How and when did you become involved with the Cancer Support Community?

I have only become aware of Cancer Support Community these last few months. The services they provide and the care and understanding with which they provide it, it’s a true gift. As they so beautifully and simply put it…”so that no one faces cancer alone”.

Tell us more about your upcoming performance for the Cancer Support Community.

I am so honored to have been included in the Cancer Support Community Spring Celebration. There is something that shifts in me when I am able to sing for an extraordinary event… an extraordinary purpose such as this. The songs take on new meaning. The storytelling becomes a bit more personal. And in this time of spring, I will perform songs of celebrating life, love and hope.

What inspires you?

I am inspired by those who give of themselves hoping to create a better world. I have always found that when it’s being reported that “things” are at their darkest, you turn to find a loving gesture, a giving hand, a motivated spirit, an unexpected and generous act. People are good at heart. When I pay attention and recognize that truth… I am inspired.

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Volunteer for a better community and a better you: National Health Care Volunteer Week challenge

This week (April 6-12) is National Health Care Volunteer Week.. It was established by President Nixon in 1974 as a way to show appreciation and raise awareness for volunteers and the valuable services they provide. Volunteer work is an integral part of the operation of many social and civic groups, including the Cancer Support Community.

Data collected by the National Conference on Citizenship in 2012 estimates that service hours nationwide make a contribution equivalent to $175 billion. As part of this great movement, National Health Care Volunteer Week emphasizes the significant impact that volunteers have in the health care field and highlights the meaningful support they provide to patients, families and the larger community.

There are health benefits to volunteering, a 2013 Carnegie Mellon University study determined. An experimental group that volunteered for 200 hours a year saw a 40% decrease in their risk for high blood pressure. The emotional benefits are countless as well. If you or a loved one are affected by an illness, such as cancer, volunteering with a local hospital or non-profit organization if you are able to provides an opportunity for you to help and share your experience with others who are going through a similar situation. Volunteers enjoy a sense of accomplishment as they give back to their community and acquire new skills.

There are numerous volunteer opportunities available worldwide. Most involve just a few hours a week or just one day a week; there are even opportunities to volunteer from the comfort of your own home. If you’re a cancer survivor, you can give back to others by joining the Cancer Experience Registry, where you can help researchers learn more about the full cancer journey by answering a questionnaire. There are also often volunteer opportunities available at CSC affiliates. These vary from administrative tasks, fundraising initiatives, outreach and hands-on involvement with cancer patients, caregivers and their families. Any amount of time that you can dedicate makes a difference.

Outside of CSC, you can find addtional service projects that best suit your needs and your interests, at www.volunteermatch.org.

Throughout this week we challenge you to become involved in service. Let us know in the comment section how you will celebrate this inspiring week!

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Veronica’s story

Today’s guest blogger is Veronica Backes, a 20 year cancer survivor who shared her inspirational story with the Cancer Support Community through the website. If you would like to share your own story or experience, click here. Read Veronica’s story below.

I just celebrated by 20th anniversary of being cancer free! I want to share my story because when I was in treatment I wanted to know someone who had survived cancer for a long time. Five years is an earmark, but twenty is amazing.

I was diagnosed with stage 3B breast cancer and had 19 malignant nodes. At the time, my prognosis was very poor with an 80 percent chance of recurrence in a year, even with treatment. I was 48 years old with a ten year old daughter still at home, so death was not an option for me. My husband and I aggressively sought treatment. I called the National Institute of Health (NIH) in Washington D.C. to ask about experimental programs for my cancer, and they referred me to Moffitt Cancer Center near my home in Tampa, FL. My current doctor would not refer me to the program as he thought it was too dangerous. I made the appointment myself, and when I went to see Dr. Goldstein at the bone marrow clinic he said no one had ever done that. I was only two weeks post mastectomy—the earliest patient he ever had.

I was accepted into the program and had four months of chemotherapy, six weeks of radiation. Then I entered into a high dose chemo treatment for five days that nearly killed all the cells in my body, causing me to require an adult stem cell transplant. I was in isolation for seven weeks and suffered a complication which caused a brain bleed. I made it through that after spending a month near the hospital until I was able to return home. Then, I had shingles the month after going home, requiring an IV of anti-viral medication.

Ever since then, I have been cancer free! I have not had any late term effects, and am very grateful I had the chance to cheat death.

My advice to anyone seeking treatment for cancer is to find a cancer center specializing in your specific cancer. Seek the most aggressive treatment you can. And most of all, stay positive. I was lucky to have a lot of emotional support from my husband, family and friends, as well as a deep spiritual belief in prayers.

I feel I beat cancer despite knowing I am still a candidate for recurrence. I have had a “live for the day” life for 20 years. I have gotten the chance to see my five children grow up, get married and give me nine grandchildren—something I thought I would be deprived of seeing. I am so grateful for that gift.

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What is exactly is a registry, anyway?

The Cancer Experience Registry serves a vital role in helping researchers better understand the cancer journey, but what exactly is the Cancer Experience Registry?

Generally, a medical registry is a system for collecting, organizing and analyzing the experiences of individuals who have a certain disease, a condition that predisposes them to a health-related issue or prior exposure to substances that have been shown to cause an adverse health effect. Registries can be helpful in a number of ways by providing information such as the magnitude of the issue at hand, the incidence of a certain disease, the trends a certain disease faces over time or an assessment of the services available for individuals with the disease or condition. All of this information allows researchers to compile, analyze, and report the real experiences of individuals living with a certain disease or condition.

The Cancer Experience Registry, an initiative started by the Cancer Support Community, seeks to collect information about the emotional and social effects of living with a cancer diagnosis. Although other cancer registries exist, CSC’s Cancer Experience Registry is the first to focus on the self-reported emotional and social effects of a cancer diagnosis. In this regard, it meets a need that has been overlooked in the past and provides valuable insight into how individuals diagnosed with cancer can be treated and supported more effectively.

The Cancer Experience Registry seeks to address these issues through its three main goals, which are:

  1. To support greater understanding of the social and emotional needs of people who have been impacted by cancer
  2. To raise awareness among the research community, health care providers, patient advocates and policy makers around gaps in care and the social and emotional challenges of people affected by cancer
  3. To develop programs and services that will address the emotional and social needs and ultimately improve the long-term quality of life of people impacted by cancer

Since its inception, participation in the Cancer Experience Registry has been consistently growing, with more than 6,000 members to date. The survey is done completely online and usually takes between 20 to 45 minutes. Anyone who has been diagnosed with cancer at any point in their lives is eligible to participate in the on-going research.

The information gained from the registry will continue to allow many advances in the area of cancer support. For example, the Cancer Support Community developed Open to Options, a program that helps individuals diagnosed with cancer prepare for appointments in which they are making a treatment decision, with information gained from the registry in mind. Early findings from the registry also influenced the development of CancerSupportSource, the first web-based comprehensive distress screening program for community-based hospital, physician practices and advocacy organizations to streamline everything from screening to referral to follow-up care through one program. Further, registry data has set the stage for many health care providers to improve how they communicate with their patients and how to better address emotional and social issues that have previously not been the focus of care.

If you or someone you know is interested in participating in the Cancer Experience Registry, or if you want more information about the registry, click here.

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Lynch syndrome and cancer

March is colon cancer awareness month. Colon or colorectal cancer is the third most common cancer among men and women in the United States. It is estimated that over 135,000 new cases are diagnosed each year. A colorectal cancer diagnosis, like all cancer diagnoses, can bring up many emotions. If you or your loved one has been recently diagnosed with colorectal cancer you might be wondering, How could this happen? Does this mean other family members have an increased risk of developing colorectal cancer too?

There are several factors that might place you at a higher risk of developing colorectal cancer. Some of which include, being over the age of 50, smoking, obesity, high alcohol consumption, and/or a diet rich in red or processed meats. Another risk factor is genetics.

Up to 5% of colorectal cancers are attributed to an inherited disorder known as Lynch syndrome. If you have a family history of colorectal, endometrial (uterine), ovarian, or stomach cancer, it may be helpful to talk to your doctor about genetic counseling. A genetic counselor will help you determine if you or other family members should consider genetic testing for Lynch syndrome. This condition increases your risk of getting not just colorectal cancer, but also the other types of cancers listed above.

Deciding to find out if you have a genetic mutation, which makes you more susceptible to certain types of cancer, can be frightening. But remember, this mutation does not always mean that you will develop cancer. Nevertheless, being aware of such a mutation could help you make more informed decisions about medical treatment. With this information, and together with your doctor, you can develop a plan to increase your chances of early detection.

For more information on Lynch syndrome check out the Cancer Support Community’s Frankly Speaking About Cancer: Lynch Syndrome fact sheet.

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