A Bump in the Road –
My Ride through Roswell Park Cancer Institute
Arthur Paul Reynolds
SMASHWORDS EDITION
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PUBLISHED BY:
A. P. Reynolds on Smashwords
A Bump in the Road
My Ride through Roswell Park Cancer Institute
Copyright © 2010 by A. P. Reynolds
All rights reserved. Without limiting the rights under copyright reserved above, no part of this publication may be reproduced, stored in or introduced into a retrieval system, or transmitted, in any form, or by any means (electronic, mechanical, photocopying, recording, or otherwise) without the prior written permission of both the copyright owner and the above publisher of this book.
This is a work of non-fiction. Names, characters, places, brands, media, and incidents are real. The author acknowledges the trademarked status and trademark owners of various products referenced in this work of fiction, which have been used with permission. The publication/use of these trademarks is not authorized, associated with, or sponsored by the trademark owners.
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A portion of the sale of this book will be donated to the Roswell Park Cancer Institute in Buffalo, New York.
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People I would like to thank:
This book is dedicated to my wife Carla, and my daughter Collett who stood by me and supported me during this multi-year long adventure. Their positive attitude kept me going and gave me the incentive to get well.
I also dedicate this book to the many doctors, interns, nurses, nurse practitioners, and all the people in the various labs and departments that support the research going on to find a cure for all cancers. I have to especially thank Dr. Fuad Sheriff who first “discovered” I had a problem. If I hadn’t kept my appointment that day, and if Dr. Sheriff hadn’t noticed that something was wrong, I probably would not be here to write this book.
Finally, I am writing this book for all the people who came before me, all those cancer patients who volunteered for protocols with unknown benefits and side effects. I am writing this for the people who will follow, the hundreds of patients that are still volunteering to participate in the unknown protocols in the belief that they are helping someone else conquer cancer and hopefully, making their journey more successful and less stressful.
I hope this “short story” about my journey helps newly diagnosed leukemia patients understand this disease and know that there is a positive outcome if you believe you can beat this disease. I can’t guarantee that everyone who gets leukemia will survive, but perhaps this story will make the journey a little less frightening.
Other people I would like to thank:
I want to thank all the people who helped me edit this book. Specifically, Dr. Meir Wetzler, my primary physician at Roswell and Dr. Sharon Cramer, at Professor at Buffalo State College. Their suggestions improved its readability and accuracy. I would especially like to thank all nurses, aides, and support staff; the people in the trenches who where there during the terrible nights of pain and nightmares, who were there when the doctors weren’t or couldn’t be: Kathy, Lee, Jim, Rick, Patrick, Nancy, Gail, Jodi, Linda, Laura, Jackie, Gwen, Colleen, Zena, Wayne, Karen, Susan, Cheryl, Cathy, Carl, Faj, Lucia, Herbie, William, Angel, and Addie. I hope I have not left anyone out, but know that I really appreciated your support and caring for me while I was in Roswell.
Barbara Anderson, Kim Sweeney, and Kathy Siebold my bone marrow transplant team. They provided many hours of care giving and compassion.
I want to thank my primary physicians, Dr. Meir Wetzler, Dr. Maria Baer and Dr. Jim Slack. They gave up a lot of their time to be with the patients in Roswell and when they weren’t doing rounds, they were working in their labs to find a cure for leukemia.
I want to thank all of the visiting nurses who gave up their evenings and weekends to come by and check up on me; and for answering all the questions that Carla and I threw at them.
All the people from Upstate Pharmacy were great in providing my medications; the dedicated group of drivers who delivered my meds in all kinds of weather and with a moment’s notice.
I want to mention Dr. Sheriff again, who has kept after me, after my treatment, to take better care of myself and for being a good listener during my many visits to his office.
I want to also thank all of the people at Buffalo State College who sent me cards and visited me in Roswell. Knowing that people cared made a difference in my outlook and helped me keep a positive attitude. I want to especially thank Julie Dougherty who donated platelets just specifically for me. Julie said she was afraid the first time she donated her platelets because she wasn’t sure what to expect. Her courage helped others decide to donate platelets and as a result, save many lives. Not to lessen Julie’s contribution, but to encourage more people to donate, the process is painless (except for the needle stick) and donors get pampered (free lunch, television, etc.) during the process.
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PREFACE
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D
uring
the initial discussions with everyone that came into my hospital
room, there was a discussion of what was about to happen to me, and I
signed the protocol documents. To this day, I don’t remember that
conversation, or signing anything. In a later conversation with Dr.
Wetzler, he explained that I could have taken one of three paths of
treatment as outlined in the diagram below.
No matter what decision was made, I would have at least one round of chemotherapy known as “Induction”. This is the process of initially attempting to kill off the leukemia. If I had “good” leukemia – Good Risk AML, I would be taking the top path.
For any other type of leukemia, I would have to take the middle or bottom path; the difference being, whether or not I could find a compatible stem cell donor. The donor has to match 100% or there is the risk that the transplant would not work, or worse, kill me.
Of course, I had “bad” leukemia – Bad Risk AML; couldn’t find a compatible stem cell donor, and ended up taking the middle path.
One thing not shown in the diagram is that there was an additional round of chemotherapy at the end, called IL2 (this is described in the protocol in the appendix). This was an experimental treatment in the protocol at the time and it was an optional, additional treatment. I elected not to have it done. Partly because I had just spent eleven months of my life in and out of Roswell Park Cancer Institute. Secondly, I was tired, physically and mentally, and I didn’t think my mind or body would survive another round of harsh chemicals coursing through my system. I just wanted this to be done so I could get on with my life.
In the recent conversation with Dr. Wetzler, there is some indication that having the IL2 procedure lengthens the life span of patients opting for the procedure, and delaying or preventing the return of the leukemia.
When I was a patient, this was unknown territory, but by three or four years out, it was becoming obvious that the IL2 might be beneficial. Since I opted out of this treatment, I will be a “test patient” to see what happens to those who didn’t get the IL2. Stay tuned.
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Introduction
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It was a dark and stormy night…wait, that’s a different story for a different time. Actually it was a very nice afternoon in October 2002 when my adventure really started.
Let me give you some background details. They say things come in threes. My “three” were my parents moving into a new house, my brother-in-law’s death, and Leukemia – all within a few days time.
I have a master’s degree in educational computing and I decided that a master’s degree in library science would be a nice fit. You see, I was getting close enough to retirement to start planning for what I wanted to do when I left my current position. And I had it all planned out. I was going to complete my MLS, buy a motorcycle, retire to New Mexico and get a part time job working in a library. I wanted to live far enough away from the library so it took an hour or so to drive there. I really enjoy riding motorcycles and have had two so far in my life.
On October 14, 2002 my parents called to say they had bought a new house and would be moving in on that weekend. Of course I said I would be home to help them pack and move, but I had already scheduled a doctor’s appointment for the following Monday. I said if they really needed me for the weekend, I would cancel my doctor’s appointment and be home on Friday. Not necessary they said, there would be enough to do when I got there; and as it turns out it was a good thing I didn’t cancel my appointment.
I had been feeling tired and run down, but blamed it on my schedule. I was working a full time job, had a job as an adjunct instructor at a local college and had just started library school. With that schedule, who wouldn’t always feel tired and run down? But, I couldn’t walk across campus without stopping to catch my breath; I had to take the elevator instead of the stairs because I just couldn’t get up the thirty-nine steps to my office. My mother had congestive heart failure due to a childhood illness and had a valve replaced and I recognized my symptoms as being very similar to hers. That’s the reason I finally made an appointment to see my family doctor.
That Friday afternoon, October 18th, my mother called to say my brother-in-law, Rick, aged 47, had just died from a heart attack while driving home from work. My sister was with him and managed to stop the car before it crashed. Well, now I had to go home. But mom said no, wait until there were more details and she would call me back.
She did call back on Saturday and said nothing was going be done until Tuesday or Wednesday because an autopsy had to be done and funeral arrangements were still in the works. I told her I would be home on Monday, right after my doctor’s appointment. She said that would be fine. We said our good-byes and hung up the phone.
I never made it home to help move or for the funeral.
As you read through this book you will notice that I included dates with some of the narrative. I have done this only when a significant event occurred.
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The Stress Test
Monday, October 21, 2002 - 1:00 p.m.
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I arrived at the doctor’s office at the appointed time and began my physical exam and stress test. I was overweight, had high blood pressure and was just cranky. The stress test began with an EKG and another blood pressure measurement. I had to do this lying down and standing up; I guess these were the baseline measurements. Then I was put on a treadmill and the speed cranked up.
I think I was on the treadmill for less than a minute. I turned very pale; my heart rate shot up to over 200 beats per minute and my blood pressure was off the scale. The doctor quickly stopped the stress test and made me sit down. He said there was something very obviously wrong with me, and he immediately ordered blood work. He was so concerned that he made me wait while the tests were done.
When the results came back he looked very concerned. Apparently a normal, healthy adult has a hemoglobin level of 13-15 g/dL (grams per deciliter); my level was at 6 g/dL. I didn’t know it just then, but later my doctor told me I could have passed out and died at any moment. He said I needed to go to the local emergency room where he would set up blood and platelet transfusions for me.
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The Emergency Room
Monday, October 21, 2002
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I got to the emergency room at about 3:30 p.m. I met with Dr. Walters who was expecting me; and I was moved into one of the “stalls” in the emergency room for my treatment. If you have ever been in an emergency room, you know the rooms are nothing more than areas separated by curtains. One thing I learned about this process is that it can’t be rushed. It took 2 to 3 hours for each bag of blood and slightly longer for each bag of platelets to be transfused into to me. Carla, my wife, was by my side the whole time. I convinced her it was okay to leave for a while to get something to eat and that I would be OK. Around 11:00 p.m., I was able to get her to go home to try to sleep. I told her that I would call if anything changed. If I had to, I could take a taxi home.
I think I received at least two pints of blood and two bags of platelets. The whole process dragged on until 6:00 a.m. Tuesday morning. I was not able to sleep much, as people were constantly coming and going, I was moved to a different bed twice; there was nothing to eat and going to the bathroom with the transfusion/infusion stand attached to me was an adventure in itself.
*****
Tuesday, October 22, 2002
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Around 7:30 a.m. Dr. Walters came in with another doctor who he introduced as Dr. Hong – an oncologist/hematology specialist. Even with my limited knowledge of medicine and being extremely tired, I was able to figure he was a blood cancer doctor. A thousand things ran through my mind, but I tried to remain calm.
Dr. Hong was pleasant enough, but explained that there was something wrong with my blood. Too many white cells, not enough red cells, and more testing would have to be done. He said they had made plans to move me to Roswell Park Cancer Institute in Buffalo, New York. I was stunned; I wanted to cry -- I wanted to scream; this couldn’t be happening to me. Why me, why now?
I was able to call Carla, who was sleeping and sounded groggy when she answered the phone. I tried to tell her what was going on without scaring her. She managed to get dressed and get to the Hospital just as they were preparing to take me out to the ambulance for the ride to Roswell. I can still remember the look in her eyes – panic, fear, questions, and more. It was all I could do to keep from crying. I had just a minute to give her a hug and a kiss before I was placed on the gurney and taken out to the ambulance.
I had never been in an ambulance before, so I detached myself from my condition and found the ride to be rather interesting. The medics were quite friendly and answered all my questions. The trip took about twenty minutes and at the end of it I was wheeled into the lobby of Roswell. The amazing thing is that they had just spent several million dollars remodeling Roswell Park Cancer Institute, but no one thought of building an emergency room or an emergency entrance to the hospital. So I was wheeled in through the lobby where I was unloaded into a chair to wait further instructions.
Carla and I got through the admitting paperwork and we walked back to the seating area to wait because there were no beds available for me. We waited almost an hour and I was finally told I could go up to Five West. We grabbed the nearest elevator and rode up to the fifth floor; neither one of us said much of anything. We had no clue about what was going to happen over the next few days – I never imagined that the elevator ride would lead me into a place wherein I would lose almost a year of my life.
I decided to keep a journal because I knew I would never remember all of this. You are reading my story, taken from the notes in my journal. In fact, Roswell encourages this process. One of the first things I received after arriving in the hospital was a small journal entitled, “TO WRITE, TO DRAW, TO DREAM”, It consisted of many blank pages, inspirational sayings, quotes from people who have survived cancer. I believe it was supplied by the Leukemia and Lymphoma Society. They encouraged patients to write about their experiences and provided this starter journal.
At the bottom of the first page are these inspirational words; “We hope that this book will be a useful outlet for you while you visit the Roswell Park Cancer Institute. If you have ideas on how people can use this, let us know.” I like the idea that I was just here for a “visit”.
*****
The Adventure Begins
Tuesday, October 22, 2002 – Later in the day
*****
We arrived on the fifth floor, west wing, I went to the admitting desk, and gave them my paperwork and, was escorted into my room. Little did I know that I would not leave the hospital for five weeks! I can’t imagine how a single person (or someone with no immediate family) would handle this situation. I was scared, concerned about my wife, my daughter, my job, and my house. Would I ever go home again?
The situation wasn’t made much better in the next few hours. During that time the following things happened: a social worker stopped by to tell me she would do everything she could to be sure I wouldn’t lose my house or my job. A patient advocate came around to let me know he was there to help with any issues I might have during my “stay” at Roswell. The protocol nurse on my case, Kim Sweeney, explained my protocol; and had me sign what seemed like a hundred documents. She told me that everything being done was voluntary and I could leave any time I wanted to (a copy of the protocol is in the appendix and I honestly don’t remember signing it). Finally, the team of doctors that would be working on my case, Dr. Meir Wetzler, Dr. Maria Baer, and Dr. Slack, dropped by with a gaggle of students (nurses, nurse practitioners, and interns) to introduce themselves and gave me an overview of what to expect for the next thirty to forty days.
I was still trying to digest the fact that I was in Roswell Park Cancer Institute, that I had cancer (of some sort), and my life would never be the same.
I am really glad that Carla was there, because she was more focused than I, she really heard what the doctors where saying. I was just so overwhelmed that when someone new came in, and started talking, it was like one of those “Charlie Brown” cartoons where the teacher is talking and it’s just, “Whaa whaa whaa whaa.” During the whole process, if something major was going on and Carla was there, she took notes. Each day she would review with me what the doctors actually said. I was still in a state of denial, and couldn’t remember a lot of what the doctors said. They explained things very quickly, and used a lot of medical jargon. That’s one reason for me starting a journal; I would attempt to record events as they happened so I could review them later.
Understand now, that at this point Carla and I have had nothing to eat or drink since 6:00 a.m. We’re both tired, I’m feeling cruddy because it’s been over 48 hours since I’ve taken a shower, I am scared for my wife and what she is thinking, and I was just told I am not going home for five or six weeks. It was just so overwhelming -- I was in shock and couldn’t react to any of this. Also, I had not been able to communicate with work to let them know I was not coming in, nor had I had any contact with my daughter, parents or sister.
So the routine began. I got out of my street clothes, put on one of those ridiculous hospital gowns and got into my bed. I had more blood work done, more blood pressures taken; I was examined from head to foot. I was sent to radiology where I had everything x-rayed; I received my first MUG-A exam (This consists of getting a radioactive injection and then laying a special x-ray machine for twenty minutes to have hundreds of pictures of my heart taken and reviewed.). I was being checked out to see if I was in good enough shape to survive the treatment I was about to receive. As they say, sometimes the cure is worse than the disease.
I was taken to another part of the hospital where a medical port – a Hickman Line or Catheter - was inserted into my chest into my jugular vein. It had two “ports” attached (one red, one blue) where medications could be injected. This was done to save the veins in my arms and legs and cut down on the pain I was going to experience. These ports would be used to draw blood, inject the chemotherapy, and any other medications I might need during my stay.
It’s now about 5:30 p.m. or 6:00 p.m. Carla is with me and I finally settle down in my room and someone brought in supper for both Carla and me. One thing I can say about Roswell is that they have the best food of any hospital I have ever been in. It was almost as good as some restaurants where I had eaten. All of this would be lost on me when the chemo started working in a few days.
I could tell Carla was tired and worried, and she needed to go home. I didn’t want her to leave because I was worried about her state of mind; but I convinced her she needed to get some rest and she left around 9:30 p.m. I am pretty sure she didn’t sleep much that first night, or any night during that first round, but at least she was at home in comfortable surroundings.
I was concerned about my family more than myself. I knew I was in good hands and would receive good care. Carla was working full time as a lawyer specializing in elder law. How was she going to cope with worrying about me, her job, the house and our daughter Collett?
All of this happened so fast that Collett wasn’t aware that I was in the hospital, let alone sick. She was in her second year at SUNY Geneseo and working at the Target Store in Rochester, New York. Collett had a friend there named Brett Pirdy. He was going to Rochester Institute of Technology and worked with Collett at the Target store. They were pretty close and were dating. Brett’s mother lived close by and the two of them would travel home most weekends to visit. His mother was not in the best of health either, so he would spend a lot of time visiting her and helping out as much as he could.
*****
Day Two
Wednesday, October 22, 2002 – about 7:30 a.m.
*****
The only thing I remember from the night before was the nurses coming in every four hours or so to take my “vitals” and to make sure I was okay (to this day I cannot sleep more than four hours at a time without waking up). The bed I was on used an air mattress instead of a regular mattress and had an automatic inflation system on it. Every time I moved, the pump would come on and inflate the area I just moved from, as you can imagine, this took some getting used to.
Around 9:00 a.m. Dr. Wetzler came into my room to give me some details about what was going to happen over the next few weeks. He said that they couldn’t tell what kind of leukemia I had from just the blood work and that they would have to do a bone marrow biopsy.
There are four types of leukemia in two categories: Acute and Chronic.
Acute Myelogenous Leukemia (AML) and Chronic Myelogenous Leukemia (CML)
AML, also known as acute myelogenous leukemia, is a cancer of the myeloid line of white blood cells, characterized by the rapid proliferation of abnormal cells which accumulate in the bone marrow and interfere with the production of normal blood cells.
AML is the most common acute leukemia affecting adults, and its incidence increases with age. Although AML is a relatively rare disease, accounting for approximately 1.2% of cancer deaths in the United States, its incidence is expected to increase as the population ages.
Acute Lymphocytic Leukemia (ALL) and Chronic Lymphocytic Leukemia (CLL)
ALL, also known as acute lymphocratic leukemia, causes damage and death by crowding out normal cells in the bone marrow, and by spreading (metastasizing) to other organs. ALL is most common in childhood and young adulthood with a peak incidence at 4-5 years of age, and another peak in old age.
They are called acute because the symptoms appear relatively quickly and the disease needs to be treated right away. The symptoms for the chronic type appear over a period of time and can be mistaken for other illnesses. Once diagnosed however, the treatment also needs to be done quickly. The medicines used for the two varieties are slightly different.
Later that day, Dr. Baer and an intern came to my room to take a biopsy (the first of many). There was a nurse there to assist, and to collect the samples. The doctor asked me if I wanted to be awake for the procedure or to get a conscious sedation (Conscious sedation is a light, general anesthesia that dulls the pain, but allows you to stay awake and be aware of your surroundings.). Keeping with the macho theme, I decided to go au natural and stay awake. It took four or five biopsies before it sunk in that “conscious sedation” was the way to go. I tended to babble a lot while sedated -- I wonder if I incriminated myself in any way?
To get a sample of my bone marrow, the doctor uses a special tool that first punctures the skin and bone. This is basically a sharp, large bore needle that has to be pressed and twisted to get through the skin and break through the bone. Once this is done, another tool (similar to a corkscrew) is inserted into this tube and twisted. As it turns, it brings the bone marrow up with it and the marrow is placed into a test tube and sent off to the lab. The doctor’s preferred spot for getting bone marrow is from the hip, about where a belt would sit.
During the process the doctor must have hit one of my nerves because all of a sudden my legs went stiff and I felt a shooting pain go all the way up my back. This scared the doctor and she kept saying, “I’m so sorry.” The whole process took only five or ten minutes but seem a lot longer than that.
The doctor, intern and nurse left after that, and I spent most of that day just waiting for test results, and getting used to my new “home”. Carla had come to visit in time to see the procedure and was bothered by it. We spent the rest of that day alternating between just talking about what was going to happen and watching TV. She left to get supper in the cafeteria -- later learned she could order supper and have it delivered with mine so we could eat meals together in my room.
When I was admitted I received a “green card” that had all my important information on it. This also allowed Carla to get a discount on parking in the ramp near the hospital.
My chemo couldn’t start until it was determined exactly what type of leukemia I had. To while away the time, I was given a handbook to read, to understand what I would be going through. On page 17 of the handbook, it says that children between 2 and 10 years old have a 40% chance for a cure. I had access to the Internet and decided to check out options for a person my age. According to several sites on the Internet, the percentage for recovery and/or remission gets worse as a patient gets older, over 60 years of age, the outlook was pretty grim. Having access to the Internet to do research is wonderful, but sometimes the information provided can be depressing.
*****
Day Three
Wednesday, October 23, 2002
*****
I think it was around 9:00 a.m. when Dr. Wetzler came in to tell me that they hadn’t been able to get a good enough sample of bone marrow to determine which kind of leukemia I had. They would have to do another biopsy to get a better sample.
Later that day, Dr. Baer came for the next sample. This time she took it out of my left hipbone. I found out later that my right hipbone provided a better sample and was easier to get to. From that point on, all my biopsies where taken from my right side. Six years later I still have a small scar in the pattern of little circles on my lower right side; it has its value, as I can always tell you when the weather will change.
The rest of the day passed quietly. I was able to eat and watch TV. Later, Carla came in and brought some pajamas, and mail from home. We ate supper and watched a little TV together. It was easy to tell that Carla was not getting enough sleep; after we ate she curled up in the chair, and took a nap.
*****
Round One Begins
Thursday, October 24, 2002
*****
When Carla came in, she brought some of my clothes from home so I didn’t have to wear those silly gowns provided by the hospital. I switched to pajamas later on because the room was either too hot or too cold and there never was an in-between.
While I waited for everything to start, I was placed on fluids. In the picture above you can see my medical pump. This pole would become my buddy and I named it “Barney” (after one of my favorite cartoon characters – Barney Rubble). We would be inseparable for the next five weeks. Also, notice the hair. It was never to be like that again.
Kim Sweeney, the research nurse in charge of my protocol explained that I had three options: (1) Do nothing -- just have support, come to the hospital for routine checkups and infusions; (2) go for standard treatment; or (3) go for special experimental treatment. I told her I would go for one of the last two treatment options (Which option that was ultimately selected would be determined by the kind of leukemia I had). Going with the first option basically meant that I was going to die.
The blood work and bone marrow biopsy determined that I didn’t have the “good” leukemia, so I have to follow a standard protocol for my treatment. Apparently, there is some kind of lottery system because I was told that the computer didn’t pick me for an experimental treatment. So I was “stuck” with the standard, proven treatment.
*****
The Chemo Infusion
*****
What I didn’t realize was that getting the chemotherapy was relatively easy; it was the delay that knocked me out. After the port was in place, the nurses simply hung a bag of the chemo drugs on the stand and connected it to one of my ports.
The chemotherapy drugs for the first round are infused twenty-four hours a day, for seven days. After seven days all the chemo was stopped, but the various fluids continued to be infused. On about day fourteen I found out what chemo was all about. It seems that it takes a week or so after the infusions stop before the chemo actually takes effect. That’s when the nausea, diarrhea, mucusitis, and pain start to be noticed.
For the first week I thought, “This isn’t bad.” I was eating really well. The dietician would stop by with her meal plans, and I planned out my meals for the first two or three weeks – pizza, chicken, beef wellington, pudding, pie, coffee, and a variety of juices. On day nine or ten, I think I planned on eating chicken ala king. The first bite was okay. After that, it tasted like rubber and glass at the same time. It hurt to chew and it hurt to swallow; and the smell of the food was causing me to be nauseous. Some days were better than others, and I was able to eat. Some days were really bad, and I settled for Jell-O and hot tea.
The nurses said I would not want to drink coffee after a while: of course I didn’t believe them. Before I went into Roswell, I was drinking two pots of coffee a day. The second or third day after the chemo hit, I stopped drinking coffee completely. It was to be hot tea only. I couldn’t even put honey in the tea because the “bee spit” that is used to make honey contained too many germs and I didn’t have an immune system anymore.
The chemo messed with everything, including my digestive system. I switched between diarrhea and constipation. There is no privacy in any hospital, but is seemed that whenever I needed to go to the bathroom, one of the nurses or doctors would need to see me for something. I started getting nervous about being in the bathroom for anything. By the way, everything, and I mean everything, was measured while I was in the hospital. All my intakes and outputs were measured on an hourly basis. If my output didn’t match my input, I was put on lasix (a loop diuretic, a water pill, that prevents your body from absorbing too much salt, allowing the salt to instead be passed in your urine) for a few days. It’s called lasix because its effects last for six hours, and it is very effective.
Once I knew that I was going to be in the hospital for a while and I knew I was going to be semi-mobile, I had Carla bring in my laptop computer. I started creating a website that detailed all the things that were happening to me. I think this helped my mental state a little; it surely helped me keep track of everything. I was also able to keep in touch with people through my work email; just having some contact with the outside world helped me keep a positive attitude about this “trip”.
My website is located at:
http://sites.google.com/site/paulreynoldsproject/
*****
Monday, November 4, 2002
*****
It’s interesting how people mark important events. I image that most people who were alive when President Kennedy was killed, still remember where they were and what they were doing (I was in seventh grade French class). Roswell became a time marker for us. We started talking about dates BC, Before Cancer. Today, we celebrate Collett’s 20th birthday in Roswell. Carla brought in some small gifts and the nurses ordered a special birthday tray for Collett. It came with a cupcake with a candle in it. It was special because I was still here to see it, and it was special because we could all be together. I wasn’t sure if I would see anymore of her birthdays, or mine for that matter, but I was going to give it my best shot.
*****
Sunday, November 10, 2002
*****
The chemo messes with everything, so I’m not sure I have my dates and times correct, even though I tried to write in my journal as soon as something significant happened.
According to my count it is now Day 13 in the hospital and Day 11 after the chemo infusion was completed. Even though this is tough on my mind and body, I have a lot of people here who seem to care about me and they are looking out for my best interests.
I worry about Carla because she has to go home and take care of everything: the house, the cat, her job, and Collett. People don’t realize that having cancer is possibly worse for the family than the person going through treatment. Of course, the patient is going through a lot of physical pain and mental anguish, but there is twenty-four hour support. If the smallest thing happens, there are several people there in a minute to help. The family is home dealing with daily issues and worrying about the family member in the hospital. There is not always someone to come to the immediate aid of the family members at home.
*****
Tuesday, November 12, 2002
*****
I had another bone marrow biopsy today. This biopsy went better than the other two. It takes a few days to get the results from the lab, but the doctors always let me know what’s happening.
*****
My Hair
*****
Another myth about chemo is that it makes your hair fall out right away. My hair stayed attached until almost the end of the first round. I was running my hand through my hair one day and noticed that it was starting to come out. So, instead of having it come out in clumps and looking silly, Jodi, one of the nurses, shaved my head. That in itself was a harrowing experience since I was the first patient that she had shaved. She came at me with the wrong edge of the electric razor and I thought for sure I was going to lose an ear, or at least be scarred for life.
I mentioned our cat earlier. His name was BO, which stood for Body Odor. I named him that because we got him from the SPCA and he would let out the stinkiest farts -- even worse than some people I know. He also had a skin condition that made him smelly at times. He was Carla’s constant companion while I was in the hospital and seemed to sense she needed some company and comforting.
He had a skin condition that the vets could not diagnose. So, once every six months he would go to the vets for a shave and a special bath. One of his treatments coincided with me losing my hair and I posted his picture on my website. Unexpectedly, we had a lot in common.
I got all kinds of emails as a result of posting the picture, most people understood, but some wanted to know why I was so mean to my cat. I tried to explain that the cat was shaved due to health concerns. But some people just didn’t want to hear it.
*****
Monday, November 18, 2002
*****
I survived another night without spiking a temperature. Dr. Wetzler said that if I stay fever-free he would let me go home tomorrow. He also said there’s no reason to keep my catheter, so that will come out before I go home. I’m so excited. It’s like when I was a kid and it is Christmas Eve. Getting discharged from the hospital was almost as bad as getting discharged from the Army (I spent three years in the Army).
Even though I was going home and would be home for the holidays, I would still have to come back to Roswell twice a week for blood tests, infusions and other checkups. The doctors wanted to make sure I didn’t relapse between rounds.
Since I was just discharged from Roswell and my immune system was nonexistent, I wasn’t allowed to have visitors, so no company for Thanksgiving this year. But this was still one of the best Thanksgivings I have ever had.
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End of Round One – At Home
Monday, December 2, 2002
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I have been home for a while and am awaiting word from Dr. Wetzler on what to do. At this point, I was going back to Roswell every few days for check-ups, blood work, and infusions. The last I heard was that I was supposed to return to Roswell on December 12 to start Round Two of my treatment, with the actual infusion starting on December 17. This means I would have to spend Christmas and New Year’s in the hospital. This was not a pleasant thought.
Dr. Wetzler called a couple of days later to tell me that my protocol nurse, Kim Sweeney (the doctor called her the “protocol police”) said the 17th was too soon to start my second round of chemo. I would have to wait at least two weeks before starting my second round of chemo. This meant I could enjoy the holidays at home.
At this same time, Dr. Wetzler said I should be looking for a bone marrow donor and suggested I talk to my family. My sister Janine was the most likely candidate since my mother was too old and not in the best of health. So Carla and I made a trip to Roswell’s business department to get the paperwork started to see if Jan could be my donor. This process would take a few weeks, so my second round of chemo was set for January 6, 2003. There was some concern about the length of time between the rounds of chemo; there was a small chance I could relapse during this period.
I was feeling a little down and needed something to cheer me up. Some people from my office sent me a surprise gift and it came at just the right time. I threatened to wear it to work, but Carla wouldn’t let me out of the house with it on.
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Bone Marrow Donor
Friday, December 27, 2002
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Barbara Anderson, the bone marrow transplant coordinator, called to say my sister could not be a donor. The blood tests showed that she was only a 50% match for me. (I asked my mother which one of us was adopted – since my sister was only 50% compatible, she or I must have been adopted. My mother didn’t see the humor in my comments.) I could still attempt to do a allogeneic (donor) transplant or go for an autologous (auto) transplant.
The concerns were that if I go with the allogeneic transplant, I could run the risk of the donor’s white cells attacking my cells as “foreign bodies” and actually attacking my organs. This is called Graft-vs-Host-Disease. Also, if this did happen (or the transplant failed), I would have no recourse. If I elected to go with the autologous transplant and it failed, I could still try the donor option. The concern about an auto transplant is that there is the risk of relapse. The success of the transplant depends on the health and age of the patient. At 52 years old, I was considered young.
*****
Monday, December 30, 2002
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The holidays went by without issues, but I developed a cough and it scared me. I wasn’t sure if it was a cold or not; if it was, what would that do to my treatment? So, Carla drove me into Roswell and I underwent some tests. My lungs were clear and, although low, my counts were okay.
After the New Year, both Carla and I got sick with something. Carla had it worse than I did, but it passed in a couple of days. I was tired and slept most of the time for the next few days.
*****
Friday, January 3, 2003
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I’m getting ready to head back to Roswell to start round two: consolidation. For some reason I felt very apprehensive about this round; I don’t know why, but I suppose since I now know what’s going to happen, I wasn’t too excited about going through it again.
The chemo causes all sorts of side effects. I was given some drugs to lessen the effects. Of course, some of those drugs had their own side effects, so I had to take more drugs to offset those effects. Here is a list of what I was taking.
Levaquin -- a quinolone antibiotic used in adults as a lung, sinus, skin, and urinary tract infection treatment
Acyclovir -- commonly used antiviral drug
Metoclopramide -- used short-term to treat heartburn caused by gastroesophageal reflux
Diflucan -- used to treat and prevent fungal infections
Protonx -- manages erosive acid reflux, treat associated symptoms of acid reflux, and heal esophageal erosions
Docusate -- is given to make stools softer and easier to pass
Oxydocone -- opioid pain reliever
Vancomycin -- reduce the development of drug-resistant bacteria and maintain the effectiveness of Vancomycin and other antibacterial drugs
Sodium Chloride Spray -- for dry eyes
Triamcinolone Cream -- used to treat allergies, skin conditions, ulcerative colitis, and arthritis
Dexamethasone -- a potent synthetic member of the glucocorticoid class of steroid hormones. It acts as an anti-inflammatory and immunosuppressant
*****
Round Two
Monday, January 6, 2003
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Carla and I arrived at Roswell at 8:30 a.m. to admit me for Round Two, consolidation. After having a few weeks off to recover from the first round of chemo, this round is supposed to completely kill off any leukemia left and prepare me for growing my own, healthy stem cells. These cells will be infused back into me after the third round of chemo. I was admitted to five-west again, but this time I had a room with no view. Not that this was important, since as soon as the effects of the chemo hit, a good view was the least of my concerns.
This time around I had a new Hickman two-lumen catheter inserted. This device was supposed to be inserted into my left chest since my first one was in my right side. The doctors tried to vary things so no one part of my body was over stressed. Just my luck, though, the veins in my left side were occluded so the new port had to be put in my right side. It was inserted directly into my jugular vein. Because they first tried the left side and finally ended up using my right side, both sides of my chest were really sore. It hurt this time to have the port inserted.
I went back to my room to start another week of chemo. This time I am getting Ara-C (Ara-C is one of the older chemotherapy drugs which have been around and in use for many years. Ara-C is a clear, colorless liquid given by intravenous route) and Etoposide VP-16 (Etoposide is a colorless fluid. It is also available as pale pink capsules).
Receiving chemotherapy is not a hard or painful process. What most people don’t understand is that the side effects of chemo are what cause all the problems and the side effects don’t usually manifest themselves until several days after the chemo is stopped being infused.
Unlike the first round of chemo, the doses for this round were given in doses. This round started at 9:30 p.m. and would be infused in four doses. In this round the side effects showed up quicker than during the first round. My appetite is almost gone; food looks good, but there is no flavor. The nausea is back with a vengeance; the smell of food triggered my gag reflexes almost immediately. Also, the mucusitis is back, making it difficult to chew and swallow my food; even Jell-O is hard to eat. The chemo drugs affected my eyes; it made them photophobic (This is when the eyes are very sensitive to light.)
Several more drugs were added to counteract these symptoms:
Zophram -- for the nausea
Phenergran -- used to treat allergy symptoms and prevent motion sickness
Atavan -- a benzodiazepine used to treat anxiety disorders or anxiety associated with depression
Oxydocone -- an opioid analgesic medication synthesized from thebaine (a minor constituent of opium).
*****
Friday, January 10, 2003
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This round of chemo caused severe leg cramps, and pain all over my body. I also developed a deep-red rash over most of my body. I started taking morphine for the leg cramps and a fentanyl patch (one of the most powerful opioid analgesics with a potency approximately 81 times that of morphine) on my arm.
After talking to the doctor and nurses, it seems it’s more likely that the growth hormone shots caused the “bone ache” I was experiencing. It got to the point where it was hard to sit or lay down for any length of time. Walking seemed to help the ache go away, but that lasted for only a short time. Between the nurses’ encouragement and the bone ache, I was certainly getting a lot of exercise walking around the ward.
I found the best way to get any rest was to sleep in the recliner in my room. But it seemed that just as I got comfortable and started falling asleep, a nurse or an aide came in to take my vitals, give me meds, or to just check up on me.
Another side effect of the chemo and other drugs was constipation or diarrhea. For some people, it’s constipation, for others, it’s diarrhea. For me, it was constipation (thus the docusate – a stool softener).
*****
Saturday, January 11, 2003
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I am anticipating going home to recover from this round of chemo, but during the night I spiked a fever of 390 C or about 1050 F. If I have a fever, I can’t go home. Dr. Wetzler decided I needed to stay until Sunday. He wanted to watch my rash and keep an eye on my fever.
The doctors and nurses encouraged patients to walk around the ward. The ward is set up with the nurses’ station set up as an island in the middle of the ward with the rooms around the outside. Twenty times around the loop is 1/8 of a mile. When I was feeling anxious or bored, I would grab my IV stand, Barney, and do the loop. I must have walked 15 or 20 miles while I was there.
*****
Sunday, January 12, 2003
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I was waiting for Dr. Wetzler to come by to let me know if I was going home today or not. I tried to eat my breakfast while I was waiting, but the chemo has totally destroyed any sense of taste that I had had; I can’t even make spit. Everything tasted bland, but sweet at the same time. No amount of salt seemed to get rid of the sweet tastes.
I think just the thought that I might go home today made me feel better. If I did have to stay, I was getting a shower. It had been almost a week since my last one. But, it was my lucky day and around 2:00 p.m., the doctor said I could go home.
*****
End of Round Two -- Back Home
Monday, January 13, 2003
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The doctor let me come home yesterday. After dealing with the paperwork and packing up all my things, I got home about 2:00 p.m. All I wanted to do was sleep. I set up my place on the couch, got my favorite blanket and hat and settled in. Chemo has made me constantly sleepy and cold. I used to sit around in shorts and a T-shirt, even in the winter. Now I have to wear a sweat suit, socks and a hat to even begin warming up. I usually added a down comforter too. I just couldn’t get warm.
Around 3:00 p.m. Upstate pharmacy delivered my lifetime supply of vancomycin. Right behind the delivery guy, the visiting nurse from Univera showed up to show me how to infuse the drug. The vanco comes in little pressurized balls, pretty neat actually. I simply cleaned my ports with a saline solution and heparin (a highly-sulfated glycosaminoglygan – pharmaceutical grade heparin is derived from mucosal tissues of slaughtered meat animals, such as pig intestine or cow lung) and connected one of the balls to one of the lines and carried on as usual. It took about an hour to infuse one dose and I had to do this once every 12 hours.
*****
Tuesday, January 14, 2003
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Being an outpatient means that I still had to visit Roswell two or three times a week. So, at 8:30 a.m. on Tuesday the 14th I’m back in Roswell for blood work and a check on my antibiotics. I don’t know how Carla did it, but she always managed to be available to take me to Roswell. My life was disrupted and I was away from work, but Carla missed a lot of work too. People don’t understand how much a disease like leukemia (or any cancer) and its treatment disrupts everything for everyone, not just the patient.
The vanco infusion was changed to every eight hours instead of 12, which means I had to get up in the middle of the night to infuse the stuff. It is said that a lot of rest helps recovery. Well, there wasn’t a lot of rest, either at home or in the hospital.
The Univera visiting nurse stopped by to show Carla and me how to change the dressing that covers my port. (Yes, I went home with the second port still imbedded in my chest, but this is a good thing because otherwise I would have to stick myself with a needle several times a day.) The dressing has to be changed every time I take a shower. At home, I could do this every couple of days; at the hospital, a shower was a once a week treat. I’ll tell you, a nice hot shower never felt so good in my life.
Because I wasn’t as good a boy as I should have been, I had other issues with my fluid intake, it was decided that I needed to infuse myself with a saline solution. The visiting nurse showed Carla and me how to install the fluid bag into the pump, how to turn on/reset the pump, and how to hook up all the tubes. So now, Barney “junior” was at home with me, following me around the house. Our house is a split-level configuration, so it was interesting trying to get the pump from one room to another, up and down stairs, through narrow doorways, etc.
*****
Thursday, January 16, 2003
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I had a 7:30 a.m. appointment in the infusion clinic today. It was a good thing too. I felt like I was run over by a truck. As it turns out, I didn’t eat enough or take in enough fluids. I was diagnosed with pancreatitis (an inflammation of the pancreas) and readmitted to Roswell around 3:00 p.m. I was admitted to Five West and everyone was surprised to see me back so soon. Fluid intake is very important, almost more important than eating. I was put on “NPO” (nothing by mouth), hooked up to fluids, antibiotics and painkillers. I think because I couldn’t eat anything, I really wanted ice cream. I realized (only now) that had I eaten better and taken in at more fluids while I was home, I wouldn’t be in the situation I was in.
*****
Sunday, January 19, 2003
*****
Still in Roswell, but since today was a dressing change day, I got to take a nice long shower. The water in Roswell never got hot, so I had a nice long, tepid shower, but it still felt so good. My vitals are not good enough for me to go home yet, so it looks like birthday number 53 will be celebrated in Roswell.
A new doctor, Dr. Slack, stopped by to explain that my pancreas was putting out large doses of a digestive enzyme (even though I wasn’t eating) and that was what was causing all my pain. The enzymes help digest the food I ate. Normally, these enzymes don’t become active until they reach the small intestines. Since I have been pain free for a day or two, I can now start on a clear liquid diet – Jell-O, water, tea, juice, etc.