Ribbons By Ka
i Ba yl iley 1
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Acknowledgements Thanks to my mum for her inspration and bravery, Freestyle for the opportunity and resources, and everyone at Cancer Care Point who talked to me for thier kindness and cooperation. 3
Table of Contents Table of Contents Preface Introduction Chapters 1: Show me the money! Chapter 2: More like one big community Chapter 3: Services for patients and families Chapter 4: Parents, families, and cancer Conclusion Cited Works Author Bio 5
Preface My mom was diagnosed with cancer two years ago and finished her treatment one year ago. Experiencing this with my mother made me think about how different treatments for cancer had effects that could be worse than the cancer itself. I wanted to find something deeper, something we could all learn from, even if the journey with cancer isn’t immediately relevant to our own lives. I wanted to make a book that would show the struggles that cancer patients and their families went through and about how all of their voices should be heard and their needs met. My mother is a cancer survivor who had found a support group for kids like me at Cancer Care Point, CCP. I wanted to find out more about how cancer patients and their families are supported during their ordeal; thus, I had spoke to Dave Henderson, one of the founders, and Amy Goldsbury, a social worker at CCP. They gave me insights into a few of the struggles that CCP faces. He told me about the challenges that a lot of the families had and how CCP provided services for them as well as patients and survivors. So I decided not only to write about the cancer survivors and patients but also their families and loved ones who are also affected in a chain reaction of emotional pain. 6
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Introduction
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The story of how Cancer Care Point started was back in 2005, Dave Henderson had some friends approach him at church. They were describing their cancer journey and treatment and what they proceeded to explain to Dave was that after getting treatment for many months, feeling sick, losing hair, having to watch a loved one suffer they didn’t understand why there was nothing offered in the community to help them. Why there was specifically nothing to support them after everything they had been through was supposedly over. They reached out to their friend Dave because he works in the medical field. Dave listened with compassion and understanding and then replied, “I develop and construct medical office buildings, but I don’t deal with the [medicine practiced in those buildings] .... This is like you telling me you’re having problems with your church and I’m supposed to fix your church… that’s just not what I do.” He was intrigued by the possibility of helping the cancer community, so he met with a friend who was an oncologist who he had known for a number of years. His friend had a 25-year vision of what an integrated cancer center should look like. So Dave had thought to himself, “what would happen if our company, who primarily makes office buildings, really tried to do something [to help the cancer community].” Dave stated, “My vision began from an integrated standpoint. I began to vi-
sualize what the project would it look like in terms of floors 1,2,3, and 4. Could we really create an environment where a patient could come in, and instead of having to go to multiple locations, could have one location to go to for the majority of their treatments?” There were a few obstacles to anticipate when starting CCP. Dave Henderson explains, “There’s a woman I knew quite well by the name of Gay Crawford, and Gay and I are both in Rotary together. She has really been a strong resource in our community of cancer services. I said to her, Gay, I need to talk to you about creating an integrated cancer center in the Bay Area, particularly San Jose. ‘Yeah, right!’ Gay said, sarcastically. I said I was serious. Her next question was, ‘when, 2018? That was back in 2009 when we had this discussion. Gay really was one of the first people outside of the company that really came alongside what we were trying to do. She became a huge catalyst, and still is today. We said, well you know if we are gonna do this right, let’s start having some focus groups. Let’s talk to cancer patients and find out what are they really looking for. What could really influence integration of care? Let’s go to the patient instead of just going to the doctor. (Henderson) CCP importance to the cancer community has a huge influence. The current need for services for cancer patients is high and more organizations like CCP are needed. Patients have a strong need for services for their mental, emotional, and physical health and having organizations that can serve for all of those purposes is highly needed.
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Chapter 1 : Where it all started
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CCP started with only a thousand dollars, so where did it all go? Dave explained there are many aspects to be mindful of when starting up an organization. He describes how It took around 3 years to go from no, idea where they would get money, to a functioning center for supporting patients and their families. Each of those 3 years were a challenge. “You sit there hoping to change the world. You never go into something like this without thinking it’s going to be a challenge. It’s got to scale in an appropriate way. If it doesn’t then your personal life and everybody else goes sideways. There needs to be kind of a core strategy that would allow us to stay focused on what we wanted to do.” Dave said, so they had decided to focus on the strategy rather than on the money. They had focused create an integrated care center model that provides areas of service that cover emotional and physical health and be able to provide social services. So they needed a great model. Great conversation, how were they going to do it? Where did they start? CCP’s first thousand dollar contribution came from one of the founders. A man who donated one thousand dollars in honor of his mother away from cancer.made aad a thousand dollars ,but how did
they change a community on a thousand dollars? The first money was the start. “All the money came following it’s own journey,” as Dave would say. They were amazed that in over 3 years they went from $1,000 to having an annual budget of $800,000. Dave also talked about how they desperately required someone to keep everything in check, an executive director. It took them a while, but they finally got Rob Tufel. During the creation of CCP and it’s growing staff and community Dave wanted all of the people involved to have a lasting impact on CCP. He stated that they should have a thumbprint on CCP. And what better way to put a thumbprint on a place to literally do it. Dave had gotten a white foam board and asked the CCP staff and donors to dip their thumbs in ink, print the board, and sign their prints. It was this foam board with tiny thumbprints that kept them going when starting CCP. Over the years the amount of prints have increased and the board is noow displayed within CCP for all to see. Today, Cancer Care Point is a support center for families and individuals dealing with cancer. They help families and individuals with cancer services so they can deal with cancer in a healthy way. They don’t just treat cancer patients, they treat the whole family. Cancer Care Point has a revolutionary perspective on cancer affecting families and loved ones. No other place covers all kinds of treatments, for everyone involved, as Cancer Care Point does. 11
Chapter 2: One Big Community When walking in the doors of Cancer Care Point, the first thing one notices is the ribbons over the front desk, six ribbons in six colors shimmering in the fluorescent lights. They are so perfectly placed on the wall to show their importance, that it is the foundation and philosophy of Cancer care Point. Just by seeing a couple of colors you can see which are present in your life, which color effects you, and know immediately that the smiling faces in this building will help you with all that they can. CCP represents all types of cancers which I have found to be very important since Dave had told me that in the cancer community breast cancer is widely advertised and gets a lot of funding; anyone can tell you what the breast cancer color is – pink. However, when you ask people if they know the prostate cancer color or brain cancer color, most would draw blank. CCP makes sure that each cancer type is equally represented and supported. Also the staff members at CCP are very friendly, helpful, and empathic people which is an important factor that created its close community. Rob Tufe Rl has more than 20 years of experience in the health field, including working as the Executive Director for different foundations. He also directed the Patient Services Department at the National Brain Tumor Foundation. He is currently the President of the UC Berke12
ley School of Public Health Alumni Association Board. With his help and the help of so many more, like Amy Goldsbury and Laura Crutchlow, social workers for Cancer Care Point, Community and patient advocate Pam Lehner, director of operations Cheryl Brown, administrative assistant Sharon Luebbe, and development and outreach coordinator Megan Kennedy.
My first time going to CCP was in 2013, a few months after my mother’s mastectomy. She had found this place in one her recovery classes and knew it would be greatly beneficial to my sisters and me. The people there were so welcoming, and when my sister and I were in the teen group for dealing with cancer parents, not only did we feel very acknowledged when we spoke about how we felt but we also didn’t feel very alone anymore.
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When the Cancer Care Point was starting out they did not have a lot of services for Cancer patients. Amy Goldsbury had told me that there were two women, one who was a massage therapist, and another who taught cooking classes. They would come to Cancer Care Point and give massages and cooking classes to patients and survivors. It was a huge hit with the people that came. CCP also started to get more appreciation. The CCP staff decided that this is what they really needed, integrated services for patients and their families. So they decided they would provide services such as massage therapy, teen groups, cooking and nutrition classes, a wig bank, yoga, and many other services that would help the families and patients deal with the issue of cancer that was giving them stress. The wig bank they provide has a wide variety of hairstyles and colors, and if none of those are your style they have a variety of scarves and
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Chapter 3: Services hats as well. People make donations of hats, wigs, and scarves to add to the collection that appeals to a cancer patients own personal tastes. Another service they provide is Massage therapy, an important aspect to human health in terms enhancing the function of muscle tissues and promote relaxation, which is important for people dealing with the stresses of having cancer present in their life. Yoga classes are also a good form of physical therapy and way to relieve stress and muscle pain. Forms of meditation are also practiced in yoga which can also help survivors connect with spirituality. I think this is very important, since my mother had told me that when she was going through the torturous experience of having cancer, “it made me question everything, my faith, my trust in the universe, my trust in myself, my trust in my body”. However with meditation and yoga my mother was able to regain the trust she had in her body and became physically much healthier. Along with massages to help them relax, they also may need to change their lifestyles to prevent cancer from coming back. According to the National Cancer Institute, “Some tumors make chemicals that change the way the body uses certain nutrients. The body’s use of protein, carbohydrates, and fat may be affected, especially by tumors of the stomach or intestines. A patient may seem to be eating enough, but the body may not be able to absorb all the nutrients from the food.” This is a very important factor that effects the body ability to fight illness and disease. Also, different types of cancer treatments can affect nutrition, such as chemotherapy, radiation, stem cell transplant, immunotherapy, and other surgeries. It is very important to treat weight loss caused by nutrition loss due to cancer or cancer treatments, and CCP address these issues.. The nutrition and cooking classes help them learn which food choices and meal sizes are the best for keeping them healthy, cancer free, and on the right path to proper nutrition. Since cancer not only affects the survivor but their whole family, Cancer Care Point helps the family as well, while the teen center helps adolescents cope with cancer in their families, helping them connect with other kids in similar circumstances and express their feelings about the subject in a safe and supportive place.
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Chapter 4: Families and Cancer The children that struggle with dealing with cancer present in their families are one of the many things survivors had to take on part of their level of stress. I wanted to know more about how the parents felt so I went to my best source, my mother. I asked my mom different questions regarding her cancer experience and how her family reacted. She described to me how she had first discovered her cancer in April of 2013. A couple of months earlier she had went to the doctor for a routine check up. When they were checking her breasts they had found harder tissue in her breast.The nurse had said to my mom, “oh I think it’s just, you know, when you get your period, your breasts 16
swell up and it could just be from hormones. Come back in six weeks and we will check it again” So my mom came back six weeks later and the tissue didn’t change. At that point they did a mammogram and that’s how they found it. She basically had no signs that there was anything going on in there except for when the mammogram came back. From this description I asked her about how it affected her lifestyle, to which she replied, Well you feel like you’re not in control of your life. You kick into kind of survival mode because you’re faced with the fear of death. So the fact that that you actually could die one day hits you in the face. That was pretty major for me. It was really hard because all the things I believed in, all the ways I felt I was already healing my body, by alternative medicine and eating right. I was surprised. How did I get this? Did none of my efforts work? ...You trust your body and all of sudden you’re like whoa! what happened? After treatment my outlook on life had changed. I found that the most important thing in life is to be present and to take each day and to live it fully. How is it gonna be and how can each second count. Who am I gonna choose to be?. Am I gointg chose to take some time and just like appreciate each moment, each little blessing and each little miracle that happens? (Bailey) 17
Conclusion It is very relevant today to discuss the importance of centers like CCP because of the current growing struggle of cancer affecting peoples lives. When CCP started out there were not many other organizations like it, but today there is a growing number of cancer care centers. As cancer research is slowly making its way towards a cure, we need to have support for people as they go through the painful process of actually experiencing cancer. An intern that Dave had hired worked on a statement that would describe CCP’s intentions, which he sent via email: Cancer is not only a disease of the patient, but affects the entire community and loved ones surrounding the patient. The mission of this Cancer Center out reach program would be to focus and personalize with an emphasis on the patient’s life, the support for each patient as they begin the difficult journey from screen diagnosis to treatment and survivorship. Cancer Care Point is a welcoming environment families, patients and survivors. It provides many types of helpful services to aid in emotional, physical, and mental health. It has gone through a series of obstacles to get to its wonderful current state and is continuing to grow and help many people along the way. 18
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Cited Sources “Nutrition in Cancer Care.” National Cancer Institute. 5 Dec. 2014. Web. 20 Mar. 2015. Henderson, Dave. Personal Interview. 5 Mar. 2015. Goldsbury, Amy. Personal Interview. 5 Mar. 2015. Bailey, Kim. Personal Interview. 23 Feb. 2015 “Helping Children When a Family Member Has Cancer: Dealing With a Parent`s Terminal Illness.” American Cancer Society. 20 March. 2015. Web. 26 March. 2015 “Pupils Share Their Views, Experiences About Cancer.” Africa News Service 25 Feb. 2015. Opposing Viewpoints in Context. Web. 26 Mar. 2015. Mishori, Ranit, and LaTasha Seliby. “Drugs that help prevent breast cancer exist, but few women take them.” Washington Post 17 Feb. 2015. Opposing Viewpoints in Context. Web. 26 Mar. 2015.
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Kayli Bailey is a Junior at Mountain View High School and Freestyle Academy. Kayli has lived in a couple of different places with her sisters and parents, including Michigan, Japan, and now California. She is an activist who loves to play video games, run, play guitar, and works very hard in the arts! She was inspired to write this book by her mom, who struggled with breast cancer and survived. Kayli hopes to make a change for the better in this world using visual communication and art. She wants to travel the world and maybe go to space someday and even lead an equalist revolution worldwide that leads to long-lasting peace. Go big or go home, right? 25