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Dear Cancer, It’s Me: Teens Affected by Cancer Speak Out

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On March 13, the Cancer Support Community Valley/Ventura/Santa Barbara hosted its 2nd Annual “Dear Cancer, It’s Me” Teen Essay and Photo Contest Awards Ceremony. CSCVVSB reached out to 100 regional high schools asking students to “talk back” to cancer, through a written essay or a photo collection. We want to thank our generous sponsors who made this year’s contest possible: Anthem Blue Cross, Amgen, Genentech, the Sun Valley Group and Pacific Beverage Company.

We were absolutely blown away by the strength displayed by all of the participants. It is our privilege to share the finalists’ essays with you. 

 

First Place, Family and Friend Written Essay:

“Adversities Do Not Lead to Sorrow and Pain, They Lead to a New Beginning” by Diego Villegas

Dear Cancer,

“Do not pray for easy lives. Pray to be stronger men.”- John F. Kennedy. This quote is what you, Cancer, have made me aspire to; to become stronger than you. You may have changed my life perspective drastically in the last three years and this is due to the life-changing experiences you have given me. However, those experiences have changed my personality, shaped my character, and influenced my future.

In April of 2010, you gave my dad severe pain in his lumbar region and on the 28th he received a CT abdomen scan which brought alarming news. You thought you could hide, but the doctors were aware of your evil gimmick. They found a small calcification on his liver and lymph nodes that were three to four centimeters in size. On the 4th of May, my dad went through a CT retroperitoneal lymph node biopsy and two days after, they finally found you. Surprisingly, you were interpreted as a form of metastatic carcinoma of urothelial origin. Twenty-four days later my dad went through the operation that would determine his faith. The surgeons performed a bypass surgery, removing his stomach and connecting his esophagus to his small intestine.

quote1jpgI was only fourteen at the time, a young only child who shared the love of his mother and father in a small two room apartment. But of course you didn’t care about that, now did you? After my father was returned to a regular hospital room I was scared when I saw that he had plastic tubes coming out from his nose, needles inserted into his hand, and a devastated, awful countenance. You really caused a lot of damage to me and my parents. At first he didn’t make any movements when my mom and I entered the room. I guess he realized someone was present because he tried moving his fingers and opening his eyes. When I reached to hold his hand I felt a lot of body heat and sweat as he tried to clutch my fingers. He was making an effort to stay with me even though you were slowly permeating the organs of his body. I didn’t know what to do but to look at him and wonder if he was going to recover from the surgery. My mom told me not to cry in front of him because that would only hurt him more. You made me hold in tears, but you didn’t make me weak, you constructed bravery in me.

The nurse informed us that he would still be asleep for a while because the anesthetics were still wearing off. From the very moment I looked at him I knew that I had to be his caregiver. I had to dedicate my time to taking care of my dad at all times. I wasn’t going to let you take him away from me. Whenever he needed assistance I would be there to attend to him. I would feed him, brush his teeth, rinse his mouth, clean his sweat, and hear his talks about the dreams he had. I had to massage the places where you made his body ached, I had to change his bed position because you made him uncomfortable and I also had to walk him everywhere he needed to go because you were making him weaker as the days passed. This went on for about two weeks, and at that time I didn’t know it, but my dad was spending his last few days on Earth by my side.

quote2jpgTaking care of my dad at the hospital was one of the things I thought I would never do, at least during my early teenage years. I didn’t hate you; I just wondered why this adversity was happening to me. I had to watch my dad slowly leave my world and enter into the next world. He would dream such eccentric dreams. He told me that in his dreams we would go to Disneyland, Universal Studios and the public park with the disabled patients he cared for at his job. Day by day he was becoming more delusional. I remember pressing the button that would release morphine into his body because he could no longer take the excruciating pain you caused him. The last days with him were the most painful because I saw that he wasn’t getting any better and I was afraid that you could end his life at any second of any minute of any hour of any day.

I used to tell my mom and myself that when he recovered from this disease I would tell him of the weird dreams he told me. Unfortunately, that day never came. Apparently the doctors couldn’t do a curative surgery, but they did do a palliative surgery. My mom told me that a palliative surgery was done when the tumor is too widespread to be completely removed. So the only thing the surgeons could do was to remove part of the tumor in order to temporarily relieve symptoms and prevent further complications. You were still invading my dad’s body!

On June 10, 2010, at the age of 45, my dad died from pancreatic cancer. My father’s death left me uncertain of my future, despite all the lessons he taught me. You, Cancer, made me experience the saddest days of my life. Ever since I started school in California, after emigrating from Peru in 2004, he made me stay after school to get help with my homework during most of my elementary and middle school years, and every summer break he would enroll me in summer school. His big dream was to see me graduate from high school and go off to a university. The day he died, all I could think of was that I was never going to talk to him ever again or have him present to teach me about what I didn’t know and help me improve on what I did know. I was completely lost.

Without my dad my world became meaningless. I now had to live with the fact that every morning, I would no longer see my dad come into my room and tell me “Good morning son, it’s time to go to school.” As the days passed, I kept thinking about what I could have done to prevent my dad from getting infected by you, what I could have done to help him get better, what I could have done to save him from you. My mom constantly reminded me to pray for my dad’s soul to go to Heaven and that being brave as well as strong for my dad was the only thing left for me to do.

quote1jpgI began to realize that my life wasn’t the one that ended. My dad was still alive through me, his only child, and I had to finish the work that he started. All those nights he helped me understand the material I learned at school, all those days that he taught me English, all the assignments he gave me to do on my own time just so I could perform better at school, and all that preparation wasn’t going to be in vain.

My mom now had to be both parents. We had a lot of family and friends’ support, but just enough to cover the rent and the daily expenses. Then, as we were getting back on our feet, my mom was diagnosed with breast cancer just two months after my father’s passing. Of course, as the caring mother she was, she didn’t tell me about it until the day before her surgery. I couldn’t believe it; you were back and this time you wanted to take the life of my other beloved parent! I was completely devastated when I heard that you were infiltrating my mom’s body. I felt like my whole life was about to end and the only question on my mind was if she would be able to recover from the abominable disease that you are. She had two surgeries, the first a biopsy, to find out how severe you were. The second was when the doctors discovered that you had spread throughout her right breast damaging eight lymph nodes, and they decided to surgically remove her right breast. The surgery was a success, but the worst parts were the treatments that she received. She was scheduled to receive eight chemotherapies and thirty-three sessions of radiotherapy.

Being an only child, I had to rely on my instincts and knowledge to find strength within myself to help my mom obtain the necessary assistance she needed. I had to be with her all day and night, relieving her of her pain, comforting her emotions and battling the cancer alongside her.  I would accompany her to every single chemotherapy appointment. During the last ones, she came out of the hospital in a wheelchair and was awfully weak due to all the strong drugs that were injected into her poor, small body. In the days after her chemotherapy sessions she felt pain, fatigue, and nausea. She couldn’t walk correctly, and felt horrible tingling sensations in her sural region and slowly started to lose all of her hair. You had my mom going through the most miserable days of her life just to make sure that you were completely gone from her body. Her life depended on me. It was my responsibility to care for my mother just as I would have cared for my father. I only had one parent left, and my job in life as a son was to make sure she was healthy once again and that she was well cared for. I couldn’t bear it if she were no longer in this world.

Because of the illness in my family, and the duties I needed to assume, I found strength I didn’t know I possessed. It was inevitable for me to become the man of the house and by doing so I’ve mastered a great deal of independence and leadership. Losing a parent at a young age must be the most devastating event ever to happen to someone, yet the lessons I’ve learned will help me become the person my parents wanted me to be.

I may not be the one that had cancer but I’ve learned to live a life with you, if not I wouldn’t be here writing to you. You made me mature really fast. You made me stronger than I ever was before and because of you, I learned how to manage and overcome any obstacle that appears before me. You broke me at first, but I wasn’t going to please you by letting you keep me like that. I had to change for the better. I now look at my dad with admiration and as someone I strive to be, and he continues to gives me courage and willpower to move on in life. I also thank my mom for all the effort she put in to stay with me. Furthermore, I pray that you never return, and if you ever do, I’ll be ready, I can promise you that.

Sincerely,

Diego Villegas

 

Diego VillegasDiego Villegas was born July 6, 1996 in Lima, Peru. At the age of seven he emigrated to the United States with his parents and had to adjust to a brand new life in the state of California. He attended Sunny Brae Elementary School, Patrick Henry Middle School, and will be graduating in June from high school and going to College. His last middle school year, he got the news that his father had cancer, and about two months later his dad died from pancreatic cancer. Not long after his mother was diagnosed with breast cancer. Thankfully, she was saved. Being an only child, he had to rely on his instincts and knowledge to find the strength within himself to help his mom obtain the necessary assistance she needed. Due to the adversities in his life, he had to mature faster, become stronger, and learned to value and treasure life because it could be taken away at any second. 

 

Second Place, Family and Friend Written Essay:

“Torn Down” by Karina Schink

I was in 1st grade when my mom and my dad sat me down in the living room. I saw next to my mom, her long brown hair tickling at my arm, when my dad told my sister and I the news.

“Elena, Karina, mommy is sick,” he had said, “she has something called cancer.” I will never forget the look on my mom’s face when he said those words. It was as if he had let something go and it was finally out there, running free. He told my sister and me that we needed to understand that Mom was going to be in and out of the hospital. He said that everything was going to change and that Mommy was going to fight this beast has hard as she could, but we needed to understand that we may wake up without a mommy.

quote2jI didn’t understand. What was this thing trying to take away my mommy? Had I done something wrong? Had my mom done something wrong? Why would this ever happen to someone I loved? For the first time in my life, I prayed. That night, I defied my atheist family and knelt in front of my bed and prayed to what all the kids at school called God. I prayed that this was all a dream, and it would be gone in the morning.

I woke up and my mom and dad were gone, a family friend was there to take us to school. That was the last time I ever prayed; the last time I would ever believe in something as powerful as God.

Everything changed. I grew up that year. I didn’t care about the bullies at school, I didn’t care that I didn’t have friends. I was frozen in time, school wasn’t really anything, just people talking around me, but never to me. I would go home every single day, hoping that my mom would be there. Sometimes she was, sometimes she wasn’t. The times I didn’t see her were the worst. I had to wait for my dad to say that the thing called Chemo had been tough that day and she would be staying in the hospital.

Through all of this, the realization that my mom would be changed forever came down to one moment. I never revisit it because the nightmares of that one moment finally stopped years ago. But, I still remember it.

Mom was home. She had just completed her first week of Chemotherapy and would be home for the first time that week. I wanted to ask her something, I don’t remember what, but I walked down the hallway, looking for her. I heard something come from inside my parent’s bedroom. It was a soft buzzing noise. I thought maybe my dad was shaving, and I walked through the doors and turned left. Standing there, tears falling down her face, a pile of long brown hair curled up on the floor, and a razer going against her head, was my mom; bald and sobbing. She hadn’t seen me until I gasped, and turned around, slamming into the dresser. I started screaming, crying. I ran out of the room and right into my dad’s arms.

That moment I saw my mom like that, was the most terrified I have ever been in my entire life. I wasn’t meant to see that. I wasn’t meant to see her looking so weak because she only wanted us to see her strength. It was in that moment I understood, that like her beautiful hair, my mom was falling apart. I was afraid of her. I couldn’t recognize her and I couldn’t believe that woman was my mommy. But then, when she hugged me and I smelled her perfume, I knew it was her and nothing, not even this thing called cancer could take that away from me.

Months later came the most amazing news in the entire world. The whole family had just witnessed my dad becoming a citizen of the United States. We were in the car when my mom’s phone rang. I heard her swallow and saw her stare at it. I asked her to answer it, I didn’t know this would be the most important phone call she would ever receive.

She said yes a couple times and then hung up. The phone fell out of her hands, and she got out of the car. The back was still open and she sat down, cradling her wigged head in her hands. She was crying. I felt my heart sink into my feet. This was the cancer calling and he wasn’t going to go away. My dad went over to her and held him in his arms; he was smiling. My sister and I unbuckled and went to meet them. My mom squeezed me in the tightest hug I have ever had in my entire life.

“That was my cancer doctor. It’s gone. It’s completely gone,” she said to my sister and me. We were too young to understand why, but tears began to stream down all of our faces. As a family we stood arm in arm, squished into one big hug.

My mom’s hair grew back, but she kept it short. I tell her all the time, I love her long hair, but she says she misses her long hair. I think her short grey hair makes her look like an angel.

That wasn’t my last time with cancer. I would see the beast again and I would witness many of his battles again. With my 8th grade friend, Jeannete Orrantia, with another breast-cancer surivior, who was stuck down again, Mary Ellen Sheets, with my first grade teacher, Gale Meyers, with my friend’s mom, Donna Iverson, and then, my hero: Carolyn Lavery.

I knew she had been sick, but my parents didn’t tell me with what. But I thought I knew. I was sitting at my desk, playing a game. I was a freshman in high school, and boys were my biggest fear at the time. My mom came in and said, Mrs. Lavery has cancer. And like I am now, I started crying.

“No,” was all I said. No. She can’t. I face my mom having cancer, and then, the woman who helped me through all of that, who was my first friend, my 3rd grade teacher, my hero, and the woman I aspired to be, had cancer. I had lost contact with her, so I sent her a letter. She was on a medication and I told her I had faith in it. Then, a month later, my mom came into my room again. Mrs. Lavery was dead. I screamed and cried. My mom held me as I shook with the most violent cry I have ever let out. My hero was dead. My hero is dead.

“It’s not fair,” I had screamed. My mom whispered she knew. I cried at school, I blocked out my friends, wore black, and had my iPod plugged in for weeks. I went to her celebration of life. I didn’t think I could, but I wanted to remember the most amazing woman I have ever known. I went to greet her husband, he and I were never really close, but he grabbed me and pulled me into a hug, he sobbed into my shoulder. I refused to cry. I needed to be strong for him. Then, he told me, through shaking breaths, that she got my letter, days before she died. He said that it made her cry and she never knew she meant that much. She wasn’t going to write back, but she was too week. She knew she was going to die, and with her husband, she wrote her obituary, quoting me in it: “Carolyn was excited about teaching and worked tirelessly to prepare her students for life. One former student recently wrote to her: “It was in your class that I became passionate about school and learning. People don’t always get the chance to thank the people who made a difference in their life, so I wanted to take the opportunity to thank you for being a role model for me. You are the reason I try so hard in school and the reason I am who I am”.”

On December 22nd, 2011, she had lost her fight, but I will never forget her. She died peacefully and I have comfort in that. This year, my sister came into my room, the same way my mom had in 2011. My first grade teacher, Gail Meyers, was having her second battle. I cried, talking to my best friend on the phone. She texted me updates constantly and I went to visit her. In November, her tumor began to shrank, she was responding to the medication. She will be okay, she will beat cancer for the second time.

quote1jCancer has ruled my life for eleven years. Because of it, I have met amazing people, I have lived terrified, but I have lived freely. I see how many people have beaten it and I have done Relay for Life for ten years, because I know there is a way to defeat this awful thing that tried to take my mommy away from me and took away my hero and my friends. There is nothing as amazing as the attitude of a cancer survivor. It doesn’t matter what type or how severe, they are the most incredible people in the world, and I am lucky to know so many, but I hope, I won’t meet anymore, because I hope no one has to even face this battle. It will be beaten down and I will fight every single day of my life until it is.

Karina Schink PhotoKarina Schink is a senior in high school. Her passions include writing novels, acting, and singing when she thinks no one is listening. Currently, Karina is working on publishing her novel with an editor, in hopes of having it on the shelves in 2015. Karina is the founder of an online organization that fights bullying through art.

 

 

Third Place, Family and Friend Written Essay:

“A Letter to Cancer” by McKenzie Selig 

Dear Cancer,

It’s me and I wanted to ask if you remember me because I remember everything about you. You came into my life like a tornado and left a lot of damage. Lucky for me in the darkest days I was able to find the sunlight. If you forgot what you did to my family and me, I am here to remind you.

The Friday following Thanksgiving four years ago your name came up and changed my life. My dad had sat my brothers and I down and told us the news that he had prostate cancer. Your name alone caused tears to gush down and a hundred thought to enter my head. My dad was my world and for you to have the idea to fight him made me so sick to my stomach, but I knew my dad had the strength to beat you. My dad never questioned why you had chosen him and that taught me what it really means to accept what life gives you. The following weeks were filled with lots of hugs and lost smiles, as we had to tell the news to relatives and friends. At times it was hard for me to go to school and focus on the present because my mind would wonder off and I would be left worrying about my dad and what was going to happen in the future.

quote2jjAs you know to well my dad had to participate in many doctors’ appointments, test, and still continue to go to work and support a family. It was decided two months later that my dad would under go surgery at City of Hope in an effort to remove his prostate and all you, the deadly cancer. As the day of his surgery got closer I was filled with mixed emotions. Fear crept in and thoughts that they would not get all the cancer or that my dad would not make it through the surgery were always in my mind. I was my daddies little girl and without him I knew I would be lost. On the morning of the day of surgery my brothers and I went to school like any other day and my mom took my dad to the hospital. All day I clung to my phone and waited for any news. In the afternoon I received a call from my mom saying the surgery had gone well and that they would be home in the next day or two. I didn’t know if that meant his cancer was gone or that it was still an ongoing battle but to me it was a small victory that surgery went well.

My dad came home from surgery and the recovery process began. It went well and the news came back that they had gotten all the cancer. My dad was cancer free! Of course that doesn’t mean the appointments go away and the fear disappears. It was still a long process to regaining a hundred percent health but my dad stayed strong through it all. As the days and months passed from the surgery I began to not have the thought of losing my dad with me at all times. The weight from my shoulders was lifted but I added a new type of pressure to myself. That new pressure was to try my hardest to not question what cannot be answered and to accept what life would throw at me with a positive outlook.

Cancer, I hope this makes you remember what you did to my family and I. Lucky for my dad he got the good side of you, if there is any. His experience with cancer was short and the battle was won but you don’ t like to be that generous to many people. I never thought I would say this but thank you. Thank you for allowing my dad to fight you off and thank you for teaching me how to handle what we can’t control in life.

Sincerely,

McKenzie, the little girl who still has a dad to walk her down the aisle

About McKenzie Selig:

McKenzie Selig PhotoI’m 18 years old and live in Camarillo, CA. I have an older brother who is 20 and a twin brother. I attend high school and participate on the track team. This is my seventh season of track. I have a 4.2 GPA, love math, and plan to attend UCLA in the fall. 

 

 

 

First Place, Personal Written Essay:

“My Transition from Childhood to Adulthood” by Ahnaf Faiyaz Khan

I became an adult on June 10th 2013 at 10:25 a.m. The doctor came in with a white portfolio in the small room where I sat anxiously. He sat on his swivel chair and looked me straight in the eyes. “I am very sorry, but the report has diagnosed you with cancer.” I was shocked and then furious. I wanted a new doctor. I was diagnosed with cancer, a moment in time I will never forget. I had a severe recurring pain in my neck; it became unendurable, and shortly after the doctor’s visit, I was diagnosed with Non-Hodgkin Lymphoma. I was only seventeen years old, and I was facing death. During the nights, I tried to figure out a way to cope, but failed, which resulted in a feeling of profound hopelessness. I was full of fear and anger. I could neither eat nor sleep at times. For the first time in my life I felt hopeless. I cried every night, believing that there was no prospect for a brighter day.

Document8jI thought about my future as I was recovering. Being the first in my family to attend college is a goal that I want to accomplish. In between treatment sessions, I attacked the books, studied vocab cards, and memorized formulas. Every night before I went to sleep, I would stare at the hospital ceiling. There was a placid painting of seagulls soaring. I imagined that very soon, I too would be able to ascend towards my dream school. Regardless of what people say regarding my profile, I believe that with grit and vitality, I still have a chance. I researched cancer survivor documentaries and spoke with experts. After my surgery, my friends and relatives from around the world called and visited to support me in my recovery.

After two successful chemotherapy treatments, I started to feel upbeat. Today, when I examine myself, I am certain I have transitioned from childhood to adulthood. I have learned how to handle fear, by trusting; anger, by forgiving; frustration, by praying; and pain, by surrendering to God. These lessons have given me patience, trust, and maturity. I have also learned to be more responsible, insightful, and empathetic about others’ plight. This experience has made me responsible by help others. I feel obligated to share my journey and aspire hope in those who are facing the challenge of fighting cancer. I tell people to never ever give up, regardless of whether it is logical or not. I really want to share the notion of how valuable life truly is. Now that I am an adult, I should contribute and give back to the children.

quote1jI may never fully understand why I had cancer, but I have learned that accepting it was the best decision. I have come to understand that, unfortunately, bad things happen to good people, and the only way to come to terms with life’s unfortunate events is to accept them. Taking on the challenge of fighting cancer, as it was unfairly thrust upon me, has marked my transition into adulthood. I was declared cancer-free about two weeks ago. I have learned that problems, similar to mine, are inevitable in life. We must be able to learn from it, overcome, and apply the teachings to our lives. Although I have only faced a miniscule aspect of life in comparison of what is ahead of me, I am beginning to enjoy life for what it is, and cherish each and every moment.  

Faiyaz Khan Photo IMG_0063About Ahnaf Faiyaz Khan:

I am a senior in high school. As captain of the Rocket Club, I presided over nine team members that participated in the Team America Rocket Competition and in NASA’s Student Launch Initiative Project.

I volunteer at our local mosques where I help with family nights, soup kitchens and fundraisers for the destitute. I also volunteered and interned at the Porter Ranch Medical Center where I diagnosed and scored assessments, assisted with patient intake forms and helped design psychological tests.

I love to travel and discover new perspectives, try new foods, and various cultures. During my spare time, I swim, hike,  trail run, play basketball and soccer. Photography is a growing passion; I am perpetually on the prowl for the perfect picture.

 

Second Place, Personal Written Essay, by Joshua Trapasso

“Dear cancer, it’s me”, Joshua Trapasso. I am seventeen years old, turning eighteen on March sixth. I have one brother, Alex, one sister, Sera, and my father and mother, Jason and Jody. They have loved and supported me ever since I was born. My family is very generous towards other family members, good friends and neighbors.

Since I was little, I had strange symptoms that my parents had never seen before. I would drink enormous amounts of water, and then I would go to the restroom so much. My urine would be like the color of the sun. I remember my mother was so worried, but the doctor thought of nothing, then sent me home. Another symptom I had was that, whenever I think about the future and think about death, I have this feeling like when I walk, I feel like I am running and everything in the house appeared to be so far away.

In Washington State, my mother took me to a doctor who told her that I should have an appointment for an MRI (Magnetic Resonance Imaging). The MRI was a machine that took images of my brain. So, when my doctor observed the images, he said that I have a brain tumor that is squished between my pituitary gland and the hypothalamus. When I heard the doctor say that, I started to think, “I am going to die.” I sensed that my mother knew I was scared. A few months had passed by and I was sent to the Madigan Army Medical Center where I met Dr. Newman, who was my Endocrinologist, a doctor, who takes care of hormones. The other doctor I met was an Oncologist. Dr. Newman, was a doctor who I was a little scared of because every time I saw himin the hospital, he would enter the room and he would hold a big necklace of beads that represented the boy’s and men’s testicles, also to represent different physical sizes.

Dr. Newman would feel around for my testicles and then look at his necklace of beads. Dr. Newman suggested that I needed more testosterone to have a greater size of testicles. My mother then asked Dr. Newman about my height, and since my brain tumor is in the way of my source of growing, then I would, probably stop growing. I had been four feet, ten inches for years. So Dr. Newman told my mother about one type of hormone that could be possibly make me grow a few inches. I bet my mother thought, ”Just a few inches, which would be great!” The medicine was called, growth hormone. The medicine came in a “pen” which had some liquid inside. It was like a shot medicine type object. At home the next night, my mother said, the shot needs to be injected into some fat. So, I pulled up my shirt and squeezed some belly fat. My mother took the pen, put in the needle for the shot, and twisted a dial, to show how much of a dose and then pushed in the needle into my belly fat. Having to have the miniature needle in my fat actually hurt and was the worst thing I could have ever done because the pain was so excruciating, the first shot was the worst, then as time passed I got used to the pain. I had to live with having to inject the growth hormone into my belly fat for about five months.

quote1jYears passed by and my mother took me to the hospital of USC. That is where I met Dr. Martin. My mother thought that Dr. Martin was a super genius because he had done something that seemed crazy. Dr. Martin preformed a brain surgery on me. I thought Dr. Martin was my hero for saving my brain. I remember being tired a lot after waking up, to see my mother and father right beside me.

Living in California now, there is one doctor at the hospital in Ventura that I think is a great doctor. Dr. Bracho was the one who actually diagnosed my cancer. The cancer was called “Germinoma”, which is a germ cell tumor, which is not differentiated upon examination, and it is malignant, which also means that it is a cancerous tumor.

In conclusion, I think people who do not have cancer or any medical problems, should feel lucky because they do not have to worry about all the medical appointments and blood being drawn. Also, as a cancer patient I want to thank the special groups that made me happy, for instance like when I went to Hawaii or the chance to meet the Cal Lutheran college football team.

Sincerely,

Joshua Trapasso

Josh Trapasso PhotoJosh enjoys building model cars and lego airplanes when he’s not doing school work.  Visiting aquariums is also fun, and he’s been to aquariums in New Orleans, Seattle, Long Beach, and to Sea World.

 

 

First Place, Photo Essay, by Adriana Chavez:

Photo Essay 1st Place Adriana Chavez

Adriana Chavex PhotoMy name is Adriana Chavez. I was born in Oxnard and raised in Camarillo. I am currently a sophomore in high school. I am also a Girl Scout of eleven years. I love playing volleyball, taking pictures, being outdoors and helping out in the community whenever I can.

 

 

 

 

Second Place, Photo Essay, by Leah Urzua:

Photo Essay 2nd Place Leah Ursuajpeg

Leah Urzua PhotoAbout Leah Urzua:

Hi there. I’m Leah and I am currently a Junior in high school. I love to read, bake, and run. I have a large family composed of 6 siblings, my dad, my mom, and my stepmom. This essay contest was recommended to me by one of my teachers who was aware if my situation and encouraged me to make something out of it. After submitting this photo essay, I didn’t realize how much it meant to me until it was recognized by the Cancer Support Community. No matter what the outcome, I’m glad I did it.

Third Place, Photo Essay by Aysen Tan:

PhotoEssay3rdPlaceAysenTan

Aysen TanAysen Tan is a high school senior in Ventura, CA. He is one of his school’s three valedictorians and is the Multimedia Editor of the campus online newspaper. In his free time, Aysen enjoys using his 35mm film camera, playing piano covers of Lumineers songs, and spending time with his friends. Aysen hopes to attend Columbia University and study electrical engineering. 

 

 

Slideshow Photos by Judi Bumstead

 

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Coping with the Cost of Cancer Care: Q and A with James T. Martin, Ph.D.

On Tuesday, March 25, the Cancer Support Community Valley/Ventura/Santa Barbara will present “Frankly Speaking: Coping with the Cost of Care.”  Moderator James T. Martin has a Ph.D. in economics and has worked in both the financial services sector and healthcare industry.

JamesMartin3

Photo by Judi Bumstead

Dr. Martin has over 23 years in the pharmaceutical and health care industry in a variety of roles evaluating healthcare policy and working with both providers and hospitals and other facilities.  In previous roles, he was President of two foundations providing free pharmaceuticals to indigent and under-insured patients, he has managed the SOX process for Pricing and Contracting, and he has worked closely with government affairs evaluating healthcare policy.  He currently is Treasurer of the CSCVVSB Board of Directors and attends a caregiver support group.  In the past year, he cared for his mother who was stricken with several cancers and succumbed to the disease in October 2013.  Dr. Martin occasionally consults through 1798 Consultants, Inc. on a variety of pharmaceutical products and policy issues.

In advance of his March 25 workshop, Dr. Martin was kind enough to answer our questions about coping with the cost of care.

CSCVVSB:  First, thank you for taking the time for the interview and for presenting on the cost of cancer care.  In your perspective, what are the primary challenges in the healthcare system regarding oncology treatments?

JM:  You’re welcome.  It is my pleasure to be here and share my experience.  In terms of oncology care, the Institute of Medicine (IOM) just published a wonderful article on cancer care and what cancer patients will face in the coming decade.  It makes the case that cancer care in the U.S. is facing a major crisis caused by three factors.  First, as the population ages, more cancer cases will occur.  And we now find that cancer patients are living longer and requiring significantly more treatment over time.  Secondly, cancer care in the U.S. was always expensive but is getting prohibitively expensive.  Lastly, our society must develop improved methods for reimbursing cancer care and deciding what care warrants an additional expenditure.  So, in summary, more patients having cancer, more patients living longer which is a testament to better care;  however, these patients are using much more expensive resources.  Lastly, our society has had an inability to rationally adjust how we pay for cancer care yet we must address this issue or it will overwhelm healthcare.

CSCVVSB:   Wow!  That is a lot to comprehend.  Perhaps we can talk more about cancer patients today.  If your mother had just been diagnosed with cancer, what would you recommend?

JM:  Good question.  There are many aspects to care starting with insurance, financial resources, pharmaceutical resources, nutrition support, psychosocial support, and spiritual support.   First, I would want to evaluate her insurance.  Cancer Support Community National has worked with other industry groups to create a template that every cancer patient or caregiver should fill out.  It is called the cancer insurance checklist and can be found at: www.cancerinsurancechecklist.org.

CSCVVSB:  Is that all?

JM:   Well, I was just getting started.  Once a patient understands their care and their insurance costs, they likely can see where they may require assistance.  Even during this stressful time, cancer patients must be aware that cancer care can negatively impact their family’s credit rating or even force them toward bankruptcy.  Now is the time to truly be prudent and assess all options for assistance.

There are many organizations that provide copayment support.  This can be through a pharmaceutical company sponsored organization or through an independent foundation. A patient may also receive free drugs if they qualify for special programs.  There is a CMS sponsored clearing house found at PPARX.com.

CSCVVSB:  What next?

JM:  Here is where I turn to the resources offered by CSCVVSB.  They offer wonderful psychosocial support programs including nutrition programs; counseling for patient, caregiver, and children; stress relief programs such as yoga, Tai Chi and Qi Gong.  It is great that the National Institute of Health has demonstrated that psychosocial support provided by the Cancer Support Community actually helps a cancer patient achieve significantly better outcomes.

CSCVVSB:  Anything else?

JM:  Cancer is a journey.  One needs to start the journey by assessing all of one’s needs.  Whether it is the cancer patient or the caregiver, someone must take the role of the quarterback to assess all information and choose a reasonable course for the patient.  As difficult as it is, insurance, care options, financial resources, and other psychosocial support resources must be evaluated.   One must become educated in all aspects of care and support.  Although it is very difficult, it is necessary in today’s world for oncology care.  Start the process by participating at CSCVVSB (or a Cancer Support Community near you).

CSCVVSB:  Thank you for your time today!

JM:  You’re very welcome.  I am glad to be of assistance.

Getting Through the Cancer Journey – Words from Survivors and Caregivers

On March 20, a panel of Cancer Support Community alumni will gather to share the most valuable lessons they’ve learned in their cancer journey. The panelists include survivors, spouses and caregivers who are willing to answer your questions and talk about what they wish someone had told them when they were starting their journey.

We are pleased to share a few of their tips here as a “preview” of the upcoming event. (If you’re reading this after the event and have questions, please feel free to contact us by leaving a comment or calling 805.379.4777 during Pacific Time business hours.)

Thanks to our Alumni Panelists for allowing everyone to benefit from their knowledge and experience!

Lynn Buchanan, two-time breast cancer survivor

Lynn Buchanan March 2014It’s important to get your informational needs met in order to feel a sense of real control with your recovery. Here are some tips for making the most out of your doctor visits:

  • Prepare a set of questions ahead of time. Get some help if you feel stuck.
  • Next, plan your approach to encourage your doctor to sit down and help you.
  • Sometimes telling the truth about your struggle to communicate is just the ticket.
  • Take notes and you’ll feel in a lot more control.

Evette McAlister, breast cancer survivor

  • Evette-Mark-McAlisterMany patients make the assumption that, because they’ve filled out stacks of paperwork answering various questions, the doctor will already have an idea of who is sitting in front of them. This couldn’t be further from the truth.  Don’t be afraid to express concerns and feel free to ask as many questions as possible.
  • Don’t let your doctor leave your room until ALL your questions have been answered.
  • Being involved with a support group just three days after my diagnosis, instead of waiting until later, gave me loads of insight leading to an arsenal of questions I could ask the doctor.  All were very helpful too!  Many of the doctors were impressed with my questions.  They were all surprised that I’d just been diagnosed. The medical terminology I used and knowledge I displayed, led them to believe I had been researching for months.  When one doctor smiled and shook his head, I asked…”what is it, am I asking too many questions?”  And he answered, “No, you’re just asking all the right questions.”  This was the greatest feeling of empowerment I’d felt since my diagnosis and it gave me the fuel I needed to deal with my cancer from a place of strength!
  • Remember, you are hiring these doctors to work for YOU.

Mark McAlister, spouse and caregiver

From my perspective as a parent and spouse the most important 3 things are:

  • Remaining in regular contact with people who help you maintain positive perspective while you deal with so many unknowns.
  • Whether you want to or not, the journey helps you truly prioritize and appreciate the present moment. Demonstrating this focus helps the kids feel less threatened and the spouse feel less edgy. Your ears and eyes are very important as all the new information comes in.
  • Learn the difference between healing and treatment, they are tightly intertwined…for a while, but they diverge in profound ways and should be managed independently.
  • I know I said that there were three things, but there’s one more: Listening to yourself, to your kids, your supportive friends, your loved one and their doctors; with humility and suspended judgment is, perhaps the most important and challenging skill to learn, and definitely the most helpful thing you can contribute.

Together, among all the things I tried, these were the most helpful combatants to caregiver burn-out, fear and the sense of helplessness; because they feed your strength as a stabilizing force in a turbulent time.

Lianne Ingalla, Breast Cancer Survivor

  • Jesse-Liane IngallaOne of the best things you can do is to seek a second, and even third, opinion about your diagnosis.  By the time you arrange for them, you’ve had some time to calm down and think more clearly about what additional questions to ask.  You start to gain perspective on what’s important to you, like what treatment options do you have?  What are the risks and benefits of each? Having options starts to give you back some measure of control.  Loss of control can be almost as frightening as the diagnosis and treatment.
  • Another tip I swear by is to talk with others who’ve been through something similar.  I had a Buddy Book Buddy who was very open in sharing her experiences, strength and hope.  Very powerful. [The Buddy Book is a CSCVVSB resource that allows people to connect with others who have their same diagnosis. Contact CSCVVSB for more information.]
  • My support group members truly understood what I was going through.  That was like hope in a bottle!  Having a safe place to share my fears and stressors was an outlet for communication that was strongly needed.  The bonds that formed with those going through the cancer journey brought a richness to our lives, and spurred on deeper communications and connections.

Jesse Ingalla, Spouse, Caregiver, and Prostate Cancer Survivor

  • I encourage people to approach this with an open mind. Be open and observant.
  • You never know what will hit you at a moment you do not expect.
  • When we first started attending the Cancer Support Community (then called The Wellness Community), I was struck to see and meet people 10 and 15 years down the road from their original diagnosis. Living a normal life!!! What it meant to me is that this cancer is beatable – something that eluded my thought process at that point in time. It was this beginning that put us in the right direction to recovery. Hope is an elusive state of mind. That is what the Cancer Support Community is all about: HOPE.

Participant Profile – Janell Tofanelli

In observance of National Colorectal Cancer Awareness Month, we are pleased to share Janell Tofanelli’s story of survival. Thank you, Janell, for helping to inspire us all!

JanellTofanelli

Photo by Ginny Rickey

I was diagnosed with metastatic rectal cancer in September 2005.  I began treatment immediately, but also started counseling with a psychologist to help me work through my feelings about death.  She wanted me to get connected with The Cancer Support Community Valley/Ventura/Santa Barbara as soon as possible, but between my daily radiation appointments and the gradual decline in my energy level, I wasn’t able to attend an orientation until after my first surgery in January of 2006.

During my 18-month participation I took advantage of nearly every program offered.  I joined a weekly support group.  I attended the relaxation and yoga classes.  I enjoyed the “Look Good Feel Better” workshop and many of the lectures that were offered.  The interaction I had with my group members was the centerpiece and most valuable aspect of my experience.  I came to the group without hope, convinced I was going to die.  They gave me support, wisdom and the inspiration to believe that it was possible to experience cancer with courage and hope for the future.  I will always treasure the deep and loving connections I made with each one of them.

I am happily married to Dr. Dave Tofanelli, the wonderful man I waited most of my life to meet.  We will celebrate our 14th wedding anniversary in May.  Together we’ve raised my son Austin who is now a sophomore in college.  We love to travel and enjoy eating in great restaurants. Spending time with our adult children and extended family is the source of our happiest moments.  For the last 10 years, I’ve been working as a lay counselor in my church. It feels like what I was always meant to do.  Working with people who have cancer is a great privilege and a meaningful way for me to pay forward what was given to me.  It’s a wonderful time in my life when I can turn my focus toward building a lasting legacy.

I remember very clearly how it felt to be told I had a short amount of time to live.  I also remember very clearly how it felt to know I was being given bonus time.  The Cancer Support Community made a huge difference in my cancer journey.  I believe the single most important thing about the services they provide is that they are free.  Many participants do not have the financial resources for private counseling.  Finding hope, support, and healing in a group without charge can be the difference between rising above cancer and being overwhelmed by it.  

Celebration of Excellence: Mai Brooks, M.D., F.A.C.S.

mai brooks MDDr. Mai Brooks is a board-certified surgical oncologist/general surgeon practicing in Thousand Oaks. As an active member of the CSCVVSB Professional Advisory Board, Dr. Brooks presents educational seminars to cancer patients and their families, helps identify speakers for educational workshops and refers patients to CSCVVSB for emotional and educational support.

“Patients are devastated when they hear they have cancer, so I think it’s important that they get support in addition to their doctor,” she says. “That’s why I’m so glad we have such a strong Cancer Support Community here.”

Dr. Brooks graduated Summa cum laude with a degree in Biology from the University of California, Irvine in 1984. She then received her medical degree from Harvard and completed her surgery and oncology training at Harvard’s Brigham and Women’s Hospital.

Two years ago Dr. Brooks got her whole family involved in the Holiday Homes Tour fundraiser for CSCVVSB, inviting the community to enjoy the festive “Colours of Christmas” theme of their home. Dr. Brooks, her husband Craig, and their son worked every weekend for three months to decorate their house. “It was a good experience for my younger son to learn the value of helping a cause,” says Dr. Brooks, who also has a stepson studying at New York University.

Whether she is using her immense professional talents to perform life-saving surgery, devoting her free time to leading an educational seminar for cancer survivors, or getting her family involved in a CSCVVSB fundraiser, Mai Brooks is fully committed to winning the fight against cancer, one day at a time.

“Helping people with cancer gives my life meaning,” says Dr. Brooks. “It gives me a reason to get up every morning.”