IN THEIR OWN WORDS. Concept and Inspiration Kelsey J. Barner

Transcription

1 IN THEIR OWN WORDS Concept and Inspiration Kelsey J. Barner

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3 IN THEIR OWN WORDS To know that others have walked a similar road may not make the difficulties of the journey easier, but should give us hope. Author Unknown Concept and Inspiration Kelsey J. Barner Encouragement, Support and Compilation Taylor R. Barner Kimberly J. Barner Ronald W. Barner

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5 Copyright 2008 Kelsey J. Barner All rights reserved. No part of this book may be reproduced in any form, except for the inclusion of brief quotations in review, without permission in writing from the author/publisher. Printed in USA by Instantpublisher.com

6 We dedicate this compilation of stories to celebrate the survivors, to remember those who ve lost their battle, and to fight back.

7 Contents Introduction by Kelsey Barner 1 Daddy s Story by Rachel Leftwich 3 On My Birthday by Mindy Markovich 5 A Note About My Neighbor by Tom Cromie 13 Wedding Day Warrior by Debbie Goral 15 My Pap Pap by Jamie Hewitt 17 A Survivor s Point of View by Dianne Baker 21 Elizabeth s Journey by Sherry Harris 27 Bring It On by Gwen Walwender 32 My Pop Pop s Voice by Marissa Ferry 34 Relay for Life and Hope by Leigh Ann George 38 The Walk for the Whisper by Janice Hertzog 41 Aaron s Story by Lynn Madden 43 Cancer Survivor Outsmart-Outlast-Outlive by John Cherup 46 Pineapple Upside Down by Nancy Hays 50 That Time In My Life by Val Miller 55 A Miracle by Amy Pacura 60 Opportunity by Dan St. Jean 67

8 With Hope and Thanks by Kathy Brennan 79 Sharla by Kristin Brennan 85 One of the Avengers by Linda Askey 88 My Mom and I by Renee Mohler 92 Sustaining Faith by Norma Kreuzberger 98 How I Conquered the Monster Within by Robert Pitulski 101 Caregiver by Janice Lavine 104 A Life With Purpose by Levi Roof 106 Unfinished Tomorrows by Patricia Orendorff Smith 117 Crossing the Finish Line A Survivor s Journal by David Schaffner 124 My Journey by Stephen J. Myers, Jr 137 Betty Ann s Story by Jodi L. Skelly 142 Joe s Boots by Carrie Martin 154

9 We would love to hear your reactions to the stories in this book. If you want to share a comment with us, or have a story of your own to share for publication in a future edition of In Their Own Words, please us at thebarnerfamily@comcast.net

10 Introduction By Kelsey Barner My name is Kelsey Barner. I am fifteen years old and a high school freshman. I have been inspired to become, and stay, involved in the American Cancer Society s Relay for Life, raising money for cancer research. When I was in the sixth grade, I was introduced to a man named Joe Leftwich. He was the principal at Franklin Regional Middle School; the school I would attend for three years. Mr. Leftwich was looked up to by many kids and was a very positive influence on many people. It was because of Mr. Leftwich that I became involved in the Relay for Life at Murrysville, Pennsylvania. In the two years following my first year of Relay, I became closer to Mr. Leftwich and more educated on the dangers and effects of cancer on lives of those it touches. I am now into my fourth year of Relay and each year I have been captain of a youth team made up of fourteen of my friends. Last fall, I was invited to attend a youth summit at Penn State University in State College, Pennsylvania to meet with other college and high school-aged youth to discuss and learn about Relay. It was there that I was inspired to try a new fundraiser; one that would give hope to others and raise money for the American Cancer Society. While in a breakout session, the session leader was talking about different ways to fundraise and the importance of getting survivors involved because they can be inspiring to 1

11 cancer patients, letting them know that there is hope. I thought that if it is inspiring to have a survivor share his or her personal story with one person, what would be the effect of sharing that story with ten, fifty, or one hundred people? That evening, I discussed this with my family and the idea of compiling stories into a book began to take shape. As we have worked on this project together, we have been inspired by all of the writers who have been willing to share their personal experience. Their courage gives us hope that one day my generation will not have to hear the words, you have cancer. I hope you are inspired and know there is hope as you read these stories written by cancer survivors, patients, caregivers, and family members In Their Own Words. 2

12 Daddy s Story By Rachel Leftwich It was half of my brother s lifetime, but it felt like all of mine. All that s left isn t the same. I was little and my world collapsed. My dad, Joe Leftwich didn t look sick. I guess most people don t, but I didn t know that then. What s cancer? Doesn t that kill people? There s a lot that I didn t know then. People keep saying now that he always knew that his cancer was terminal. I know why nobody told me. Everyone had something to say, seeing as he was a very public figure in the school district; it was a public fight against this disease. At the Middle School, there really was no escape for me. I m sorry. I m sorry, they would all say. I just smile and nod. Well, you know what? I m sorry too. I didn t like to be at home alone with him. After a while, it was too much for me to handle taking care of him by myself. All chance of something special, just him and I, was lost. That s all I had ever wanted anyway. My cowboy boots still fit; why did everything else have to change? All I could do was stand quiet when he yelled and deal with everything, any way I knew how. I think that he felt like he was losing control. There was nothing I could do. I was so scared that I couldn t imagine how he must have felt deep down. A few years later and we re all better at managing the dayto-day crisis situation, the private struggles that most people didn t see. My mom had it worst, taking care of everything. She had help, but I could see that she was fraying at the edges like ripped cloth. My dad was in and out of the hospital; we d all hope he would come home better. There were good times when he was in remission, and we d all cling to the hope that the cancer was gone for good. He went to work whenever he could and sometimes 3

13 when he couldn t. He loved the people there and they loved him back. He helped people even when he couldn t help himself; of this I am constantly reminded. Something like that can never truly fade. There s always going to be another former student, soccer player, childhood friend, anyone that comes forward with a story to tell. Fast forward and he s gone. A sharp release, something broke as he gently slipped away. Now I know that I m all that s left. We cry but inside it s a release. The fight is done. The fight is won. All that s left are the stories, memories, and the people he left behind as his ashes drift all over the world. He dropped into a crater atop a mountain in Maui where he once rode his bike. Now he s carried by the wind. 4

14 Dear Kelsey and family, On My Birthday By Mindy Markovich My name is Mindy Markovich and I am a breast cancer survivor. I saw your story in the Post Gazette on Dec. 27, 2007 and decided to send my story to you because I believe I can and will help people get through their Journey. This might be somewhat repetitive because I wrote some of this to a friend during my first round of chemo. But I tried to add events until now, 11 more radiation treatments and DONE!!!!!! I am in a study taking medicine for bone density to see if it would help cancer patients keep their bone density during and after therapy, but other than that, I should not be burdened with this illness for a long time or ever (I hope). Please feel free to call me if you would like to talk to me about this, or use this in your book. I feel that the more people that can know what others have been through; the easier it is for them. I only wish I would have had someone to talk to immediately. I contacted the Reach to Recovery program from American Cancer society (for which I will be a Reach to Recovery counselor in March) and that did help a lot to put things in order to deal with things one at a time. I wish more people knew and used this service, but I don t think people are told enough about what services are out there for them when diagnosed. When diagnosed, the internet can be very complicated and scary. I think that the counseling should start with your OB/GYN or from the time of a biopsy, not as you find it on the internet. Nothing is better than a real person to talk to. Here is my story: 5

15 On my birthday this year (March 6, 2007) I had my routine OB/GYN appointment. I had noticed a lump a few months before, but they have always told me that I was cystic, lumpy etc. so I thought I would ask at my appointment. I did not notice it getting any bigger. The doctor told me that if it was Cancer I would be dead already, but to have it checked and to have a sonogram of it also. I walked across the hall to make an appointment and they had an opening the next day. I believe that the doctor had known it was not good, but did me a very big favor that day. I celebrated my 48 th birthday with family and friends, and did not worry about the lump until the next day. He could not have done anything about it had he said he thought it was bad, so why make me worry. I did that enough the next day. For this I am very grateful. After my diagnosis my doctor called with concern for me. He never mentioned what he said to me or why. I did not ask. I was just happy for his concern. I went and they took the mammogram, then came in and did some more, then said, come over here for the sonogram. The Radiologist did the sonogram. She just kept taking pictures, and I said to her that it did not sound good her taking all of those pictures, she started to cry and said that it wasn't good. She told me how sorry she was and said that she looked at my films from last year and there was nothing there. I told her OK it is not anyone s fault, it happens. She then escorted me to the front room where SHE made an appointment for me to have an MRI, CT scan and appointment with a surgeon. Needless to say, I cried the whole way home, not knowing how I was going to tell Steven (my 13 year old son) or my dad. After telling my 6

16 son that I would have surgery and that I WOULD NOT die, he was fine, a real trooper. Trying to keep things light, we laughed about a lot of things. I told him if we didn t laugh we would cry. His dad, (my ex-husband) was also very involved through the diagnosis, surgery and recovery. I wanted to make sure that my son had someone to talk to about it so I made sure that his dad knew everything that was going on. Both were at my surgery and for this I am grateful. This was the 7th of March. I went through a battery of tests for the next 3 weeks, MRI, CT scans, bone scans, biopsies of every inch of my chest. It turned out to be a very large tumor on the left side, and 1 benign on the right! The doctors (all that I spoke to at each test) diagnosed the same thing, telling me that I would have to have the left breast removed and the right one would have a lumpectomy. I was mentally prepared for that and to have the surgery on March 29th. I got a call from my surgeon (who is wonderful) on that Tuesday (the 27th) to tell me that my MRI results came back and that he wanted to do a MRI guided needle biopsy on the right breast because they found something there too. I was at a track meet for Steven and just broke down, telling the doctor that I could not wait and that he had to do the surgery now because I was prepared for it and that the right side would just have to wait. He told me to think about it and that I should call him in the morning. Brian (my ex) was there and I just let loose on him. A Mom of one of my son s friends heard me break down, and came to rescue me. She is in the medical field and suggested to really think about all the options. After the track meet we (Steven, Brian and I) went to get something to eat and 7

17 talk about what I should do. He suggested that I think about having all the surgery done at one time. Why would I want to have two surgeries? I said then I will just have both removed and I don't have to worry about this up and down emotional roller coaster anymore. Once I said those words I was much better about what was to happen. I called a friend of mine who had two mastectomies at different times and reconstruction of both breasts. I told her that she was the only person who could give advice since she had been through it and she told me that she wished she would have made the same decision when she had her first, but no one gave her that option. So that was my decision. I called the doctor in the morning and apologized for my ranting and he said that he was ok with it. Then I told him what I wanted done and he thought that was a very good decision, but still did the biopsy on the right breast to make sure what it was for insurance reasons and for me to make a decision based on all the facts. It did not matter to me if he said it was bad or good, I was having both removed. His thinking was that he couldn t put it back (the right one) if there was nothing malignant. The results came back benign but questionable. I didn t change my mind. So on Tuesday, April 10th, I had a bilateral mastectomy and came home the very next day. They wanted me to be out patient but I could not shake the anesthesia so they kept me. I came home with 3 drain tubes in my chest and my sister stayed with me until Friday. I finally looked at the site on Friday and was ok with it and could do my own drains, and by the next Wednesday (my doctor appointment) he took the drains out and I went back to work the following Monday. I have 8

18 been working ever since. I miss some time for doctor appointments and on chemo treatment days leaving early to make afternoon appointments (treatment days are Fridays so that I can try to recoup till Monday). My sister s youngest graduated from High School and we went to Ohio for the party. The Saturday that we went was the day I started losing my hair. Exactly 14 days after my first chemo treatment. They don t lie, the books said it would be 14 days and it was. I tried to keep it in place for the party. The next day, at the hotel, I took a comb in the shower and just kept combing out big clumps of hair. That was terrible. I had brought a doo-rag for my head, and just put that on and wore it home. When we got home Steven shaved my head and that has been it. Steven does not care if I have anything on my head or not, so most of the time I don't wear anything at home. I do have a wig that I only wear when I have to because it is hot and itchy. I started my chemo in May. I have one treatment every three weeks of two drugs, Cytotoxin and arthimicine. This is what makes you loose your hair and makes you sick to your stomach for at least a week after. I had my 4th treatment on 7/19. That was my last one of this kind of chemo. I have to wait the 3 weeks then go back to the doctor and start on another chemo called Taxol. This was administered by IV once a week, for 12 weeks. They used to give this in a 3 week cycle also, but have found that the treatment is just as effective given once a week, and the side effects are less. Being nauseous is a killer. I didn t eat for at least 5 days after chemo and the depression is terrible - during those 5 days you can t tell me that it is going to pass. After the Taxol I had to have 9

19 radiation treatments. They said 32 treatments and they are administered every day of the work week (Monday thru Friday). As of this I have 11 more treatments to go. My skin is burned, and hurts like a very bad sun burn right now. My diagnosis was Stage 3A. The tumor on the left side was 7 cm. That is really big for a breast tumor. And, I had 1 lymph node bad out of 10. That is good, but could have been better if there was none. They did a PET CT scan after my surgery and it did not show any hot spots, meaning no active cancer cells anywhere. That is great news. The chemo and radiation should kill any dormant cells hiding anywhere else, and I don't have any breast tissue for it to come back to, so my outlook is very positive. I have been going to work and trying to be as normal as possible. I am truly blessed that this is ALL it is. I could be so much worse. I look at some of these people at the cancer center (I go to Arnold Palmer at Mt. View) and they can hardly sit up, and here I am working, and baking and running Steven everywhere under the sun. IT could be MS, or something that will only get worse. I am only getting better. I will be back to normal soon. Those people will never get better, only worse. Five days after the chemo, all I feel is tired. It really does take a lot out of you. But I will be fine. God gave me this for a reason, and I believe I have touched a lot of people already because of this. He will get me through it. I have had a lot of support from friends and family and the people at work. The cards and flowers and calls are amazing. I am usually the one on the giving side and it is very hard for me to be on the receiving side. But, my doctor told me 10

20 that if there ever was a time to be selfish, now was the time. I have been brought into people s lives for reasons or seasons. A girl I went to high school with, who I was reunited with over the course of my journey had a bad mammogram and subsequently called me to see what she should do. I told her what I would do, and she called her doctor and arranged for a biopsy to be done at Magee Hospital. Unfortunately it was malignant but very small, and she had her surgery and is looking at radiation and possibly a research study to see if she should have more therapy. I am also trying to get involved in the PA Breast Cancer Coalition, and the Relay for Life in Latrobe, and also the Race for the Cure. What an awesome moment, to see all of the survivors at these events. It truly is overwhelming. I try to be very positive and I do know that I am VERY BLESSED, but I still have my days when I feel sorry for myself. I am a divorced mother of a 14 year old now, and even though I have a lot of support from friends and family, I often think that I will spend the rest of my life alone because of my illness. Who would want a 48 year old with such baggage? But then I think, who cares, if I am by myself the rest of my life that is the destiny that God has for me. It will all work out. But some days it is very hard to look in the mirror and see no womanliness. No hair, no chest, how can you feel attractive like that. Now with the burn on my chest, you can t even pretend to have a chest. The bra hurts too badly. I will survive. I do not regret anything of the decisions I have made, and if this should reoccur, I can not say that I 11