Cancer Only Sucks on Days That End in ''Y''

By Scott D. Finestone

About the Book

Cancer Only Sucks on Days That End In Y is a combination of a memoir of our exploits battling this disease and a manual for friends and families who find themselves thrust into the wonderful (NOT) world of cancer. This touching and often hilarious story combines flashbacks from journal entries and advice on how to tackle The Monster. Whether you, a family member, friend or neighbor has a child who is facing a life-threatening illness, this book can serve as your insiders look into how one navigates those treacherous waters.

• Language: English
• Publisher: Xlibris US
• Release date: Aug 4, 2008
• ISBN: 9781465332936

Scott D. Finestone

About the Author Scott Finestone lives in Jensen Beach, Florida with his wife Rebecca and their son Zachary. Scott enjoys skydiving, mountain climbing, hot-air ballooning, big-game safari hunting, swimming with great white sharks, kayak fishing and bowling with Zachary. (Actually, I have done NONE of those, except for the kayak fishing & bowling things, which I do regularly! But then again, we have been battling Zachary’s cancer for over eight years, so maybe when we beat it we’ll tackle those other things.)

Book preview

Cancer Only Sucks On Days

That End In "Y’’

Scott D. Finestone

Copyright © 2008 by Scott D. Finestone.

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

This book was printed in the United States of America.

To order additional copies of this book, contact:

Xlibris Corporation

1-888-795-4274

www.Xlibris.com

[e-mail]

50620

Contents

Introduction

Acknowledgements:

Chapter 1

Chapter 2

Chapter 3

Chapter 4

Chapter 5

Chapter 6

Chapter 7

Chapter 8

Chapter 9

Chapter 10

Chapter 11

Chapter 12

Appendix

Introduction

I am beyond clueless as to what actually constitutes an introduction. But, I am very aware that any person stumbling across this book, and reading through the table of contents, will be either shocked or insulted by the descriptions that are given. To that end, I felt it necessary to forewarn you that I am a sarcastic animal by nature. This book is a combination of our history fighting this disease and advice for families that are joining the battle. I have a long history of hiding my pain behind my words, so inside the following pages you will learn about our journey through this wonderful disease known as cancer. If after reading my book you are at all interested in boring yourself to tears, you can go online to www.caringbridge.org/fl/zacharyfinestone and select the ‘Read Journal History’ tab where you will find all of my journal entries dating back to May of 2002 when I started to post them online.

Inside the following pages, you will not only find the topics that are mentioned in the Table of Contests, but intertwined amongst those you will also find Classic Journal entries. These are actual journal entries that were written and posted on the date shown. I have gone to great lengths to select relevant entries that will hopefully give you a unique insight into what was going on in our lives at the time of each entry. Please keep in mind that some of the context contained in these dated entries will have references to subjects that are not included in the story, so it may at times be a little bit confusing. Having said that, I have carefully (somewhat) chosen specific entries that have some relevance to the chapter that they are included in, so read them through completely before passing judgment. There is a nickname that we starting using for Zachary when he was first diagnosed, and I am certain that it is not explained anywhere in the journal entries that I have included in this book. So, when you see the name Zman, you will know that I am speaking of the man, the myth, the legend… . Zachary.

As of the writing of this book (5/1/08) there had been over 600,000 hits to that web page. That’s over 100,000 hits/year. Many of the visitors who have posted comments in our guestbook over the years have suggested that I should write a book. It is because of those pesky, prodding, lurkers that this book even exists. So blame them!

Acknowledgements:

There are so many organizations, family, friends, and acquaintances to thank, that I am CERTAIN if I try to list them all, I will fail miserably. Mine and Rebecca’s families have been amazing and unwavering in their support, both emotionally and financially over the past 8 years. Through personal illnesses, and geographical, financial and logistical challenges, they have always found a way to be there for us. Through sickness and in health, my parents have gone above and beyond the call of duty by making themselves available to us even when they were facing life changing illnesses of their own. My two brothers and their families live far away, but they have repeatedly shown how much they value the bond of our family by making themselves and their resources available to us when we have needed them. My cousins in Atlanta have also been there for us, providing moral support and advice when we have needed it. Rebecca’s father and grandparents have always made Zachary and our family a priority in their lives, even when they too were facing uncertainty and medical turmoil. I would like to make a special mention of Ian, Rebecca’s brother, who through extreme adversity has always found time for Zachary and for our family.

The only way that I could ever do justice to the numerous charities that have helped us is by listing their contact information the way that I did. I truly hope that my stories and your curiosity will drive you to read up on or research one or more of the many charities that I have mentioned. All of them are wonderful organizations that help families like ours each and every day. They rely on the support of people like you, so please never underestimate how powerful your time, resources or donations can mean to them. My business partner for 11 years and friend of over 30 years and his family have been an amazing source of help and comfort since diagnosis. From day 1, the Weekman family was standing alongside us in the hospital, making sure that we had them as a crutch to lean on. For that, we will always be grateful. I would also like to thank the Palmer’s our second family here in Florida. They have always included us in their family gatherings and made us a part of their lives. Their support and advice on issues from life to school to pharmacy questions has proven to be invaluable over the years. Zachary’s two public schools, their administrators and entire staff have been an integral part in not only keeping Zachary on pace with his classmates, but by improving Zachary’s quality of life by going above and beyond to help us out. I would like to make a special mention of the two Beth’s, one from elementary school and the other from middle school. They both have figured enormously in our success with school. The fundraisers that were done early in Zachary’s diagnosis saved us from certain bankruptcy and financial ruin, and for that, we will be eternally grateful to Jensen Beach Elementary School.

To the many friends and local companies that have helped us over the years, we thank you from the bottom of our hearts. The dinners, money, chores, gift cards, prayers, etc. that you embraced us with helped us to survive during times where the survival of our family was very much in question. I applaud you for stepping up and helping a family like ours when many of you had no personal connection to us. You have shown that the true spirit of giving and helping a neighbor is alive and well in Jensen Beach, Florida.

The many doctors and hospitals that I have repeatedly ridiculed and lambasted in my journal entries deserve to be recognized for something other than errors and problems. Rebecca and I know how fortunate we are to have been blessed with a parade of qualified and caring medical personnel over the past 8 years. To date, we have been in 10 hospitals in four states, and received medicine from an eleventh in yet another state. The many specialists, support staff and administrators who have contributed to Zachary’s longevity will always hold a special place in our hearts.

In that last paragraph I purposely did not mention the nurses who have treated Zachary over the years. To mention them as part of a larger group would not do justice to what the many nurses who have treated Zachary have meant to us. From Zachary’s first day of diagnosis, we were introduced to a level of care that we had never known existed. Zachary’s many treating nurses have contributed so much to our quality of life and to Zachary’s well-being that I feel guilty for not having dedicated an entire chapter to them. I recall many occasions when the nurses acted on our behalf to prevent the administration of the hospital from mistreating the cancer families, and I remember at least two times when a visiting specialist (doctor) was suggesting treatments that the nurses warned us about. Without them, this journey would have been even more of a nightmare than it has been.

An acknowledgement page in this book would be incomplete without mentioning the legions of faithful lurkers and posters who have plagued the pages of our guest book since May of 2002. In the past 8 years you have visited our page to check on Zachary over 600,000 times. Many of you have passed along Zachary’s web page address to friends and family, thus resulting in the accumulation of an amazing network around the world of caring people who have added us to their prayer lists and made us a part of their lives. As I mentioned in the introduction, it is because of the many urgings of guest book signers that I finally got off of my butt and wrote this book.

Last but certainly not least, there are the numerous cancer families who have either directly or indirectly touched our lives. The original Cancer Sucks Club included the following families: Us, the Charlton’s, the Mathis’s, the Schmidt’s, the Jorgensen’s, the Pacheco’s, and the Baileys. There were many other families who were a part of our club locally and remotely, however, the above-mentioned families were together at the hospital on many occasions and made it a point to make time for each other away from the cancer floor. I credit all of the cancer families for helping to inspire me with their stories and for lighting a fiery rage against this disease in me that stoked the flames of creativity and kept me sane (or insane depending on your perspective) for all of these years.

I would also like to give a special thanks to Michael Price for allowing me to use the amazing photograph that appears on the cover of this book. Please check out his other great photos at: www.michaelpricephotography.com.

P.S. In keeping with my most common ending for journal entries, there has got to be a post script. Zachary and Rebecca have been with me since early in 1995. Rebecca was only 18 at the time, and Zachary was about 9 months old. I am the only father that Zachary has ever known. Many of you were already aware of the fact that after Rebecca and got married in 1998, I adopted Zachary to make it official. I was with him for his first words, his first steps, and of course when we started this journey together with his battle with cancer. I have never viewed him as my adopted son, but rather as just… .  . my son! I am truly blessed to have a loving, caring and understanding wife who tolerates my sarcastic take on the world and allows me to vent via the web page and now this book. I am continually inspired and humbled by the strength, courage and veracity with which Zachary has fought this disease and I am quite certain that had I ever faced a fraction of the adversity that he has faced, I would surely have succumbed to its powers and lost miserably. Zman rocks!

Chapter 1

Life before Cancer

It is hard to remember our life before diagnosis, but I read about those years on the internet, so they must have existed.

It is difficult to remember a life before cancer because we have been fighting it for over eight years. I however am a firm believer that ALL stories should begin and end on a good note. Nothing is more depressing than seeing a movie where the good guy loses in the end!

Our story began in October of 1994. I was working as an assistant manager for a large pharmacy chain, and Rebecca was working next door in a flower shop. I had been in there a few times to buy flowers for my girlfriend, so I had met her on a couple of occasions. My girlfriend and I ended our relationship, and about a month later, Rebecca lost her job with the florist and she came into my store looking for a job as a cashier. She was an 18 year old single mom who carried herself with the maturity of someone in their twenties. I was 33 at the time, (no spring chicken), but until I read her application, I had no idea that she was only 18 years old. Her son Zachary was only 7 months old at the time, and I distinctly remember thinking that he looked like an angel. Whenever Rebecca would bring him into the store, people would gravitate towards him. His personality and disposition were both electrifying and calming to me at the same time. Shortly after Rebecca was hired, we began to date. And shortly after that, I had to inform my boss that I was dating an employee and that I needed to be transferred. (Companies frown upon that kind of stuff these days.)

Zachary played an integral part in our relationship from when Rebecca and I first started dating. He had never known his biological father, so his only male influence was Rebecca’s younger brother who was living with her. Ian was 13 years old at the time. Ian’s father had passed away a couple of years before I met them and Rebecca’s father lived up north in New Hampshire. Rebecca’s mother was supposed to be living with her, taking care of Ian, but she was dealing with her own demons, and was gone more than she was around. So Rebecca, at age 18, was taking care of her younger brother, and her baby. (As I wrote earlier, she was very mature for her age.) Within six months of beginning our relationship, we had moved in together. We were an instant family, (just add water and stir.) I was there with her when Zachary uttered his first words, and when he took his first steps, I was there to hold his hand. I am the only father Zachary has ever known.

Rebecca, Zachary and I very quickly formed a bond which has helped to carry us through our current battles with cancer. When Rebecca and I got married in March of 1998, Zachary was only four years old, but he participated by handing Rebecca a bouquet of flowers during the ceremony. I adopted him about two months after our wedding. To this day, when folks meet us, they comment that he looks and acts more like me than her. There have been a few times when he has tried to use the fact that I am not his biological father against me, but in the end, when the dust settles, I think that all of us would agree that we were destined to be a part of each other’s lives.

In addition to personality quirks, Zachary has always taken after me when it comes to sports. He excelled at soccer at a very young age, and when I used to play roller-blade hockey, he would be there with his skates, wanting to pass the puck or practice shooting with me between periods or after my games. My competitiveness also rubbed off on him, he hates to lose! I imagine in some ways this has helped him to battle his cancer for so long, Zachary has never been a quitter! Rebecca has also shown that she is a survivor. Through extreme adversity, she raised her son, raised her brother, finished high school, and even completed some college courses and earned her elementary teacher’s aide certificate while we were first dating. All of that may seem trivial to some folks who have faced adversity themselves, but there is more to this story than meets the eye. When Rebecca was 18 years old, she was diagnosed with lupus and rheumatoid arthritis. By the time she was diagnosed, she had lost a fair amount of bone density, especially in her hands. Having the odds stacked against her has never stopped her from forging ahead and finding a way to keep us bonded tightly as a family. She just recently started an online course to become a medical transcriptionist. Rebecca is currently working for a local bowling alley while studying for her degree; she expects to complete that program within the next few months.

As for me, I was raised in a tight-knit family with two brothers, one older and one younger. My older brother is a Senior Vice-President with a major automotive retail company, and my younger brother has a degree in physical therapy which he uses in his position as the sales manager for a large medical supply company. My father is a retired anesthesiologist and my mother is a retired nurse/counselor. I am the oddball of the family. I completed my associate’s degree and jumped from one job to another before landing with the pharmacy chain that I mentioned earlier. I was there about five years before I purchased a fishing lure business with my friend of 30 years. We turned that little business into a respected tackle distribution company that we ran successfully for 11 years before selling it. I now work in sales when I am not helping with Zachary’s numerous doctors’ visits.

So there you have it, a little taste of our history. Now that you know who the players are, we can get to the game.

Chapter 2

Diagnosis

Also known as ‘D-Day,’ or ‘The End of Days,’ or ‘Holy Shit What Am I Going To Do Now, Day.’

On March 16, 2000, our world drastically changed. Actually, it changed long before that date, but we just hadn’t figured it out yet. In February of 2000, our son Zachary who was 5 at the time, started to experience frequent fevers and then mild to moderate back pain that eventually became severe. He had just joined a t-ball league, and after each practice, his back would be hurting for a day or so. There were other more subtle changes in him that we as parents had missed. (This is the part where, as a parent, you get to beat yourself up and then blame each other. But, more on the Blame Game later.) Zachary’s frequent fevers had us running back and forth to the pediatrician’s office, where our son was placed on the conveyor belt of children waiting to see one of the many doctors who worked at that practice. The conveyor belt would move, your child would get placed in an examination room, and then a doctor would come in and proceed to NOT examine your child. Sure, they would LOOK at your child, but God-forbid they would actually TOUCH them. After the cursory 8.4 second exam, a diagnosis of a pulled muscle from t-ball and a flu bug would be made, a prescription for antibiotics would be written, and then you would be on your way.

Now, at this point in my diagnosis story, you are probably getting the impression that we blame the pediatrician for not catching the disease earlier. Yeah, he screwed up, a little bit, for not being more hands-on with Zachary, but in all reality, the odds were stacked against him of ever making a diagnosis. (More on that later.) After several weeks of the fever/pain thing not going away, it was suggested to me by my father (a retired physician) that six-year olds do NOT usually have the strength to pull muscles. His suggestion was that we have Zachary seen by an orthopedic surgeon. I called the pediatrician’s office and asked for a referral for an orthopedic surgeon. The receptionist there very bluntly informed me that they do NOT give referrals. I returned the favor by very bluntly informing her that we had a PPO, and that I didn’t NEED her permission to see another doctor. I further informed her that if she was unwilling to give me the name of an orthopedic surgeon that I would play ‘Eenie, meenie, minie, moe with the doctor list to choose one myself. She responded by saying, Well, if you are going to be that way about it, then here is the name of the doctor who we sometimes use." (Problem solved.)

We called the new doctor’s office and asked for an appointment. We were informed that the earliest one that was available would be about three weeks away. At that point, I relayed to the receptionist that I had a 5-year old son who was in pain, crying at night and unable to sleep. She promptly squeezed us in for an appointment two days out. (As a parent, YOU are responsible for being your child’s #1 advocate. There will be doors slammed in your face; however it is your job to find a way to open them. Sometimes, the doors remain shut. In those cases, you either find another way into the building, or you choose an entirely different building (doctor) to gain access to. There are organizations that will help you, but in the end, you need to step up to the plate and start swinging the bat.) [I hate sports references, but they just seem to fit sometimes.]

We made it to the new doctor’s office and got our exam. He didn’t like the way Zachary looked, so after reviewing some x-rays, he ordered an immediate MRI for that afternoon. (In retrospect, we probably should have picked up on his anxiousness to find answers, but we were so caught up in finally having someone listen to us that we were still oblivious to what was coming.) At the MRI facility, we were very fortunate that Zachary was able to lie still for over three hours as they scanned and rescanned him from a billion different angles. Once again, having a medical degree would have been REAL handy at this point. (In fact, for all of you parents of healthy kids who are reading this, you may want to use your spare time on weekends to go ahead and get your degree in medicine… . you just never know when you’re going to need it.) OK, back to the MRI place. Once again, we probably should have picked up on the concerned looks of the technicians and radiologist, but we were focusing on keeping young Zachary from moving around during the procedure. After finishing up, we were told that our doctor would call us the next morning with results.

Thursday morning March 16, 2000 will be a day that we will never forget. I was on the road selling fishing tackle in Ft. Lauderdale, about an hour and a half away from home, and Rebecca was with Zachary at the house, waiting to hear from our doctor. My mother, who is a retired nurse and counselor, had somewhat of a premonition that the news might be serious, if not confusing to Rebecca, so she had my father drive down to be with her when the call came. He made it to within 10 minutes of our house when the fateful call arrived. The news was not good. (Duh… . this book isn’t about falling off a bike and skinning your knee, it’s CANCER! What did you expect?) The doctor informed Rebecca that they had found multiple tumors in Zachary’s spine and that he had a large tumor in his belly. The doctor further informed Rebecca that she was to pack a bag and immediately take Zachary to St. Mary’s Hospital in West Palm Beach (about 45 minutes away) where there was a team waiting for her. Rebecca immediately tried to call me, but at the time we were using a cell phone provider (that will remain nameless), and we were constantly battling to find coverage. Shortly after that, my business partner was able to get me on the phone, and I immediately knew that something was amiss, because he told me that I needed to call Rebecca right away. I did, and my world was turned upside down. She told me of the tumors, and in my shock, I was unable to process that this meant cancer. I left Ft. Lauderdale and told her that I would meet her at the hospital. While driving up the highway, I called my mother and through sobs of agony, I asked her what this all meant. She tried to reassure me that we would get through it, and that we would get answers together. All of it was a blur of emotions, fear and confusion.

I ended up arriving at the hospital before Rebecca and Zachary. I found the oncologist’s office and walked in. Almost immediately, one of the doctors was walking by the sign-in window and saw me. He must have seen the distraught look on my face, because after confirming who I was, he ushered me back to his office where he proceeded to give me the good news.

We believe that Zachary has stage IV neuroblastoma. He has a large tumor in his left adrenal gland. He has multiple tumors in his spine and hips. We believe that his bone marrow is compromised. After an initial evaluation today, he will need immediate surgery tomorrow to implant a port, to give us easy access to his blood stream. Two days after that, he will begin an intense chemotherapy regimen that will last almost 3 months. If he survives that, he will then have surgery to remove the tumor in his adrenal gland. After that he will need a stem cell bone marrow transplant and radiation. If we are correct in our diagnosis of the disease being stage IV, then he has about a 40% survival rate. Approximately 80% of the kids like this will make it through chemotherapy to the transplant, and of those, about 50% will survive and live to be cancer-free. The rest either die during the process, or relapse where they have a 0% chance of long-term survival.

GREAT! . . . . Sounds perfect! . . . . Where can I sign up?

The only good news that we received that day was when Rebecca and Zachary arrived. When the doctor saw Zachary walk in, he turned to me and commented that he had fully expected Zachary to be brought in using a wheelchair. He went on to say that with Zachary’s level of disease, he was impressed at how he was carrying himself. Other than that, it was pretty much a suck-fest of a day. The other interesting (or not) data that we were given was the fact that about 550 kids each year are diagnosed with this particular disease. Using those numbers, and doing rough math, that meant that each state would have about 11 kids each year who would get this type of cancer. You spread those 11 kids over a state the size of Florida, and you start to realize why local pediatricians are not too adept at picking up these diagnoses. Now, having said that, there are many other childhood cancers that ARE detectable through simple blood work.

During that first day of hell, you get to give your history and personal information about five or six times to a variety of doctors and nurses. I know that some of the information is used in national and regional databases, but mostly they want to make sure that they have covered all of the bases when it comes to learning about the patient. This exercise also gives you the chance to focus on something other than the impending doom that is quite obviously hanging over your head. (I would sugar-coat this for you, but it’s like a band-aid. If you pull it off slowly, you’re just going to cause more pain than is necessary.)

Once you have your diagnosis, you get to move onto phase II of the process which is the treatments. Congratulations, you’ve just completed your first day as a member of the Cancer Sucks Club. I would let you