 
## **Contents**

Title

Copyright

Smashwords Edition

Dedication

Author's Note

 B.C. (Before Cancer)

 The First Admission

 Intermission

 Crash!

 Homeward Bound

 Consolidation Chemo

 Leftovers

 Remission

 To Work, or Not To Work?

 Publishing the Old-Fashioned Way

 Independent Publishing

 Labor of Love

 Marketing

 The Butterfly Effect

 What I've Learned Since

Coming Soon!

Prologue

 About the Author

Connect with Markie Madden

 Books by Markie Madden

 Also by this Publisher

My Butterfly Cancer

Markie Madden
Third Edition

Copyright © 2014 by Metamorph Publishing and Markie Madden

All rights reserved. No portion of this book may be reproduced, stored in a retrieval system, or transmitted in any form or by any means- electronic, mechanical, photocopy, recording, scanning, or other-except for brief quotations in critical reviews or articles--without the express permission of the author or publisher.

Kindle ASIN: B00NGQNQXI

Smashwords ISBN 978-1311550873

Print ISBN 978-1502320995

Published by Metamorph Publishing

Smashwords Edition License Notes:

This e-book is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you're reading this book and did not purchase it, or it was purchased for your use only, then please return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author. If you enjoyed this book, please return to Smashwords and leave a review.

Dedicated to Sam White and his wonderful family, who gave me the courage to keep up the fight. May he rest in peace. Also, to Denise (Mercer) Blackwell, whose tiny act of kindness created an out-of-control snowball (bet you had NO idea what you were starting!); to all the staff at Barnes-Jewish Hospital, Siteman Cancer Center; and to my entire family, who fought beside me every step of the way! I love you all!
Author's Note

This is the third edition of this book. I'm now reproducing it with some additions, using some very sophisticated writing software called Scrivener. Though it took a while, and some outside help, to learn to use this, as it's vastly different than Microsoft Word, I think it's a brilliant software and even has settings to help someone like me whose memory isn't so good any longer.

So, with these additions in mind, I will use a bold face print when I talk about something that's new, that wasn't in the first story, because I'd love to talk a bit more about this new software and the kinds of hardships and frustrations I could have saved myself if I'd only learned about it a few months earlier! And I'm going to talk about the walk into the world of audiobooks as well, something I hadn't known about or attempted before this book was last printed.

This new software will help me to clean up some cosmetic issues that I've dealt with over the past several months. Remember, I'm just post-chemotherapy, so A) I'm learning a new laptop and operating system (going from Windows 7 to Windows 8), B) learning a new word processing software (my latest "up-to-date" Microsoft Office pack was Office 2007!), and C) learning yet another word processing software.

In this I'd like to take a moment to thank fellow author and colleague Vinny O'Hare, head of Facebook's Awesome Gang (online), and fellow indie author Karen Prince for her book Scrivener Essentials for Windows (she wrote one for Mac users too), for her generosity in gifting me her book in PDF format, a book that I downloaded onto my phone so I'd always have a reference. Once I've finished converting my existing book files, I'll be gifting her in return.

B.C. (Before Cancer)

June 27, 2013 was a day in my life that I'll never forget. I'll tell you more about that day in a minute, but first I'd like to tell you a little bit about who I was up until that day. I was born August 19, 1975 in Midland, Texas. I grew up in the small town of Flushing, Michigan, where I eventually graduated high school. I met my husband, married, and started a family.

We moved around quite a bit, going where we could get jobs, eventually settling in a very small country town in southeast Missouri. I was 5 feet 10 inches tall, weighed in at only 132 pounds (I've always been skinny), and was in fairly good shape. I was a 37 year old wife and mother of two teenage daughters, Tasha and Ally. I had four dogs, a yellow lab/husky mix named Rain, a Great Dane/Mastiff mix named Morgan, a miniature Boxer (I think Boxer/Jack Russell terrier) named Pepper, and a golden retriever named Jody. All were rescue dogs. I also had a horse named Athena (trained by yours truly), and I worked full time as a manager in an auto parts store in the small Missouri town near my home. Medically, I had a condition called fibromyalgia, which had caused me a lot of problems in the past but was currently under control with medication. I'd had a few surgeries, had a touch of arthritis from half a lifetime of working jobs on my feet, but rarely ever got sick except maybe with the flu once in a while or a touch of hay fever.

My husband, Jay, worked a job in a factory at the time, and while we weren't even middle-class (well, maybe very low middle-class around here), we were making do even if it was paycheck to paycheck. We didn't have the newest cars, or the biggest house, but they were sufficient. Things weren't always perfect, but as a family, we were happy.

I was your average type 'A' personality: always wanting to keep busy, striving to be the best I could be at work and at home. I worked hard at any job I did, usually rising quickly through promotion. Sometimes I played hard too; one of my favorite things to do when I wasn't working was to ride or groom my horse, and I was learning how to trim her hooves myself, a very physically demanding task.

Christmas week of 2012, however, I came down with a very rare disorder called Guillain-Barre Syndrome, an auto-immune disease where the body's immune system attacks the lining surrounding the nerves. This effect is sort of like stripping the plastic shielding from around an electrical wire; without the proper shielding, the signal going down the wire travels more slowly, sometimes even stopping completely. This rare condition has been known to cause paralysis and even death. I was essentially paralyzed from the waist down. I was hospitalized for the entire week of Christmas, and spent the next two months recovering from this illness. My recovery was rapid enough to impress the doctors.

In early May of 2013, I got a head cold/flu/something or other, and was so miserable with it that, when I wasn't working, I was in bed resting. It seemed like I'd just gotten over that and came down with strep throat or something. I finally called my doctor near the end of May, asking for some antibiotics to get me over this illness, something I rarely ever did. Well, the antibiotics finally worked, and I got over the "creeping crud", as I called it. But I found that I was still very exhausted and was unable to get my usual pep back.

We didn't think much of it at the time. I mean, I was 37 years old, had been sick and in bed off and on almost a month. I thought, well, I just have to slowly get my strength back. But each day seemed to get longer and longer, and each work shift got harder and harder. I kept pushing, hoping I would get over whatever illness had knocked me down. My coworkers were even worried about me, and encouraged me to see my doctor.

Then, there was a day in mid-June when I found that I couldn't walk to my barn without stopping to rest halfway there, a distance of not even 50 yards. And my poor horse was standing in her stall, watching me, patiently waiting for me to let her out into the pen for the day (she's stalled at night, or in bad weather). I couldn't breathe, and I was light-headed even walking from my bedroom to the kitchen. That very day, I told my husband there was something wrong, and we discussed what to do about it.

I had very little in the way of medical insurance, a very cheap policy that only covered a maximum of $5,000 per patient per year. You can imagine how quickly I could max that amount, probably the minute I walked into the hospital emergency room! But we decided that whatever I was experiencing was urgent enough for a trip to the hospital. So, after my husband got home from his shift that day, we got in the car and drove the 17 miles to town, and to the ER.

Fortunately, our hospital was very nearly brand-new, only having opened in January of the same year. We didn't sit in the waiting room for long, but of course the time actually back in the ER seemed to stretch out forever. They didn't even give me a hospital gown to put on, assuming, I guess, that I would be one of those in and out patients.

I explained first to the nurse, then the doctor, about having been sick off and on the past month, and how I was having trouble getting around, about the shortness of breath and the light-headedness I was experiencing. They took my standard vitals of course, and hooked me up to a cardiac monitor, but they also drew blood to run some tests.

When the doctor came with the results of the blood test, he asked me if I had walked into the ER from the parking lot. Confused, I said, "Yes, of course I did." He then told my husband and myself that he was surprised I could have walked that far, that my red blood cell count was only 6, and that it should be at 12 or higher. I was severely anemic. It was at this point that we first heard the dreaded words, "Blood transfusion."

I knew nothing of blood transfusions, except for the fact that one of my sisters had received one when she was born prematurely. And I was only 7 years old at the time, so I barely remembered it. They brought in a form that I had to sign in order to get the blood transfusion, obviously not something that's covered in their standard "consent to treat" forms. At that point, they began the process of admitting me for the night. We hadn't really planned for me to stay, but we knew that no matter what, we had to figure out what was going on.

My platelets, the factor in the blood that causes blood to clot, were also extremely low. They asked me if I'd had any severe blood loss in the past few days, or if I had been throwing up blood, had nosebleeds, or had blood in my stool or urine. No, nothing like that, or I'd have come in a lot sooner! Or seen my regular general doctor. I did tell them I had noticed a lot of bruising on the sides of my thighs, bruising that didn't seem to go away, and I couldn't really remember bumping into anything to have caused them. So, they took me to my hospital room, and got me settled. And my husband went home so that he could get some sleep, as he had to work the next day.

Giving blood transfusions is a serious thing, even though they're matched as closely as possible. I have B negative blood, which means my blood does not have the Rhesus factor (like my husband, who is AB positive). But it was explained to me that even with a unit of donated B negative blood, there might be proteins in the new blood that could cause an allergic reaction. This was one of the reasons they had to admit me in order to give the transfusion. I needed to remain close to their expert care. I was given a hospital gown and had an IV started.

The hospital room, while comfortable (remember, the hospital was only a few months old), wasn't home, and I was so used to sleeping with my husband (and Pepper!), that I was sure I'd never get to sleep. But, it didn't really matter, as I would find out later. I was also given a couple of Tylenol and a Benadryl, something they give as a precaution against reaction.

I was first given a transfusion of platelets, a liquid the color of cookie dough, and the nurse was required to remain in my room the first half an hour of infusion, checking my vital signs every 15 minutes and watching for a reaction. After that first half hour, she still had to check my vital signs very frequently, I think maybe every 30 minutes. And it took a very long time to complete the IV.

Sometime in the middle of the night, the platelet IV was done, and they switched over to a unit of whole blood. I think it was for this infusion that the nurse had to stay in my room the entire time, checking my vital signs frequently and watching for a reaction. I remember I seemed to get really flushed-feeling, like a hormonal hot flash. This IV seemed to take a really long time as well. I don't even remember at what point in the night it was finished. I think they gave me two units of blood before the night was over.

I didn't get very much sleep that night, what with the transfusions, the nurses routinely checking my vitals, lab coming in to draw blood at 5AM, and breakfast coming in at, what, 6 or 6:30 in the morning. But I was hungry, as I had missed the "dinner" hour the night before, and had only been given a sandwich and a bag of chips. The sandwich was ok, but since I had left the house without putting my top dentures in (I was just going to be gone a few hours, I'd thought!), the chips were out of the question. I think my husband had eaten them. So anyway, I was starving! I can't even remember what I had been given, probably Egg Beater scrambled eggs (blech) and no telling what else. But, I'm sure I ate it all.

My blood work came back, and my red blood cell count was high enough for them to discharge me that day. They had taken me off my arthritis medication, an NSAID similar to Ibuprofen, because they said it's been known to cause ulcers, or bleeding in the stomach or intestines. I was given a kit to collect my own stool samples at home for three days. When my husband got out of work that afternoon, I was allowed to go home. We thought this was the end of it.

The next two weeks passed, and we resumed our normal routine. I still seemed tired, but it wasn't as bad as it had been. I went back to work, and life continued to move forward.

But by the end of June, I knew something was wrong again. I was feeling the same way I had before, and I was pale and still bruising easily. I couldn't catch my breath when I had to walk, and I found myself sitting down at work whenever I could manage to. I had gone to my regular doctor's office for getting blood drawn, before work one day. He called before I could even get to work, saying my platelet count was dangerously low again. I knew I could no longer put off the inevitable.

Back to the ER we went, with the same symptoms as before. We went through the same routine as before, vital signs, cardiac monitor, and blood drawn. This time, my red cell count was 7 (remember, it should have been 12 or higher), and so they admitted me for another transfusion. I went through a very similar experience as I had the first time, spending almost all night getting blood and platelets via an IV.

The doctor who came to see me on morning rounds wasn't my regular doctor, but he was from the same office and so knew a little about my history. He might have even been the one who had suspected the Guillain-Barre syndrome last year and sent me to a specialist. Anyway, he determined that something else needed to be done to find out what was going on with my blood, and he ordered up a bone marrow biopsy, but I had to stay in the hospital for one more day. He wanted to get a hematologist (doctor specializing in blood disorders) to actually do the test.

At this point, the blood transfusion had given me a bit of a boost, and I really didn't feel sick anymore. I certainly didn't want to spend another day sitting in a hospital bed, when I could have been sitting comfortably in my recliner at home, surrounded by my family and pets. But the doctors were adamant that I stay.

My husband visited after work that day, or maybe it was one of his off days, I really don't recall. Maybe it was the weekend, because I'm pretty sure he was there when they did the biopsy the next day. Maybe he even spent the night with me, if it was the weekend, in the recliner in my room. Whatever the case, I was stuck in the hospital once again.

The next day came my first bone marrow biopsy. We had used our phones and Googled it (yes, there's an app for that), trying to learn a little about what was going to happen. Jay even found a video that he tried to get me to watch. I refused, thank you very much! Just reading about it was bad enough.

The biopsy was done right in my room. I was lightly sedated, and rolled onto my stomach. The doctor cleaned the skin on the back of my hip, between my lower back and the swell of my buttocks. He also injected something to numb the area a bit. That felt like intense pinching. Then, he used a tool somewhat like a corkscrew to pull out a small core of bone from my hip, so that he could withdraw some of the marrow from inside the bone.

I barely felt that part, but when he actually was drawing out the marrow, I felt a horrible shooting pain, almost like when you hit the "funny bone" in your elbow, only a thousand times worse. I felt this pain from my hip all the way to my toes! And to make matters worse, I could feel the marrow moving, and the only way I can describe it to one who has never had one done is that it felt stringy, like the guts you take out from the inside of a pumpkin. The doctor laughed when I said that, but really, there's no other way to put it. The pain stopped when he was no longer drawing out fluid.

The bone marrow, as well as the little core of bone, would be sent to the lab and analyzed. They said it would take a week or more for results to come back. Since the blood transfusion had elevated my blood cell count (I think it took only one unit of blood this time), they felt comfortable discharging me, and I was released from the hospital. June 26, the hematologist's office called and told me I needed to come in the very next day. So I scheduled an appointment for the afternoon.

Now, we're up to June 27. I'll never forget that day. My oldest daughter, Tasha, had graduated high school in May, and was scheduled to start a condensed summer semester at the local community college. We had set up an appointment with a counselor, and a tour of the college, for that morning. We got her classes all set up, financial aid all taken care of, and took the tour of the college. It was a lot of walking for me, not only that I was still slightly anemic but because I'd had the bone marrow biopsy done, and my hip was very sore. The college was located in a hilly area of town, and we walked uphill and downhill quite a bit.

I think my doctor's appointment was at 1 or 2 in the afternoon, so Tasha and I went directly over to his office from the college. Jay, of course, was at work or he would have come with us. The office was located in what used to be the old hospital, and we had to park quite a ways away. I went through the normal routine that any doctor requires of a new patient: a mound of paperwork, trying to remember all the illnesses and surgeries I've ever had. I wonder if they won't soon ask for a DNA sample for their records?

The doctor was a friendly, older gentleman, and I liked him a lot. He discussed my blood test results, the negative result I'd had for blood in my stool samples (obviously he was getting reports from my regular doctor as well), and then the bomb hit. He told me I had leukemia.

Tasha and I were stunned. I noticed she even had tears in her eyes. I handed her a Kleenex and hugged her tight. I don't think it even sank in for me quite yet. It didn't hit until the drive home, when I was wondering how I was going to break this to Jay, and to Ally. No matter how hard I tried not to, I started crying while making the long drive home. Tasha kept watching me, and now and again, she would take a tissue and dab at my eyes so I could see.

Jay was home by the time we got there. I'll never forget it. He was in the kitchen, making coffee, and I was a bit shaky when I walked up to him. He had his back turned to me at first, and cheerfully asked how it was going. I didn't answer right away; I was wondering if there was any easy way to do this. So he turned to look at me, and I just said quickly, "The doctor says I have leukemia."

I think he cursed, then just held me tight while I cried. This was the last thing any of us had been expecting. It didn't run in my family and I hadn't known anyone who'd had leukemia. I didn't even know that much about it. At that point, we felt certain it was a death sentence.

The doctor had said that our small town hospital services weren't adequate to deal with something of this magnitude, and said I could either go to Memphis, Tennessee, or to a hospital in St. Louis, or to a smaller hospital a little closer to home. But I asked him, "If it was you or your family member, where would you go?" He told me instantly that he'd choose Barnes in St. Louis. So, he went about faxing my records to a doctor there, and I got my first appointment with an oncologist there on July 5th, 2013.

St. Louis is quite a drive from where we live, nearly 3 ½ hours, but I had an aunt, Alice, who lived about halfway between. Since my appointment was at something like 9am, we made arrangements to spend the 4th of July with her. She even took us out to see the city fireworks that night. I wasn't sure if they'd be the last ones I'd ever see.

The next morning, we were up and back in the car very early. It was my first appointment with Dr. Peter Westervelt, a highly-respected oncologist in St. Louis. He talked about leukemia and taught us a bit about it. My form of leukemia was acute myelogenic leukemia (AML), to be specific. Basically, immature blood cells in the bone marrow, that should have become either red blood cells, white blood cells, or platelets, were not maturing properly. Instead, these immature cells were crowding out the mature blood cells in my bone marrow, until I was no longer producing enough mature cells. With low red cells, of course, I had a reduced number of oxygen-bearing cells, hence the weakness and light-headedness. With low platelets, I had a chance of severe bleeding even from a minor cut. He also set me up for a bone marrow biopsy of his own. Fortunately, they used the opposite hip they had before, as I was still somewhat sore from the first one!

Dr. Westervelt sent us home, saying he would call when he could get me into treatment. This treatment would consist of two different types of chemotherapy. One was to be given through an IV and had to run for 24 hours, for four days. The other was given by injection once a day for three days. So I rode home (I couldn't drive after the sedation they'd given me) for 3 ½ hours with an extremely sore hip.

The First Admission

Tuesday, July 9th, 2013 was the day I was first admitted to Barnes-Jewish Hospital in St. Louis, specifically the Siteman Cancer Center within the hospital. Before I was actually admitted to a room, I had to get an early-morning surgery. I was taken into a room with a massive X-ray machine, and given medication that put me into an almost twilight sleep, though I was still somewhat aware of my surroundings.

During the surgery, they used the X-ray machine to insert an IV catheter through a large vein just above my collar bone. This flexible catheter was placed into the vein until it came to rest where the vein met the heart. Any medications infused into this IV would then go directly to the heart. This was done, I later learned, for a couple of reasons. First, the chemotherapy drugs would be delivered right to my heart, not touching the walls of my vein and causing damage. The heart would immediately pump the medication, diluting it somewhat so that it wouldn't cause tissue damage to any other veins. This catheter is called a hone, and it had two tubes coming from it with IV attachment points. This tubing stuck out from my body about 3-4 inches and was stitched to my skin. The site was covered with a clean plastic shield like they use on regular IVs. This hone was to be a part of me for a very long time.

After that, Jay and I had to wait for what seemed like forever while they prepared a room on the floor for me. We sat in the admitting waiting room, my big purple suitcase on rollers next to us. We played around with our phones somewhat (thank goodness for unlimited data!), but where we were located in the building caused poor service, and it drained our batteries fairly quickly.

I was finally assigned a room on the 6th floor of the Siteman Cancer Center, and we made our way to the floor. Barnes-Jewish is a very large hospital, the entire facility taking up several city blocks and including part of Washington University. The unit secretary met us at the nurse's station on 6, and I was taken to my room.

As hospital rooms went, it was fairly large, one whole wall being taken up by a picture window. Unfortunately, my only view would be of the tall brick building next to this building, and if I looked down, I could see a tiny courtyard. I found out later that the building across the way was abandoned and they were scheduled to take it down.

Of course, I had to go through all the normal "admitting" questions with the nurse, trying to remember all the medical things that had ever happened to me, all my allergies, what medications I was taking, and so on. There was a computer station in my room, and all the information the nurse collected from me went right into it.

By the time all this admitting stuff was done and over with, it was so late and Jay decided he didn't want to make the 3 ½ hour drive home, so we asked for a cot for him and he stayed the night. My first chemotherapy IV started sometime in the wee hours that very first night. I was to get two drugs: idarubicin and cytarabine. The idarubicin was injected into my hone over the course of about 15 minutes, but the cytarabine was to run for a full 24 hours. I was also put on an IV of regular fluids that would run constantly.

I'd never seen such precautions in a medical setting except for perhaps a surgery. The nurse administering my medication put on a gown, two sets of gloves, and even put a waterproof pad between my skin and the end of my hone. Once the chemo was hooked to the tubing, each connection was taped with medical tape. This medication was so caustic to tissue that even a drop on the skin could be hazardous. I was advised that I was not to leave the floor while the chemo was running. I was now temporarily chained to an IV pole.

I was warned that the idarubicin, a medication the color of deep autumn orange, would likely change the color of my urine to bright red or orange. It was also known to cause neurological side effects, so with each dose I had to perform several tests: closing my eyes and touching my finger to my nose, pushing/pulling on the nurses with hands and feet, and writing a sentence on a piece of paper.

I was, however, able to walk the hallways of the floor, and I was shown the visitor's lounge and the pantry, where they stocked milk, juice, cereal, sandwiches, salads, and a variety of other things that patients could snack on whenever they wanted. I was also given a menu, and was told that I could order whatever I wanted, whenever I wanted, during the hours the kitchen was open. The menu offered a wide variety of meals and I was actually happy that I could order whenever I wanted.

I spent a fretful first night at Barnes, with nurses periodically checking my chemo and vitals, and they came in early the next morning to draw blood, something that would become a daily ritual. Jay left for home that morning, and I was truly alone for the first time in a long time. I had never been so far away from home and family.

My room had its own mini fridge and heating/air conditioning that I could control myself, and I was grateful for that. I was generally too cold in the air conditioning. I was allowed to wear my own clothes, but with the chemo running into my hone, I was unable to change my shirt. And the chemo would run continuously for 4 days! One of the patient care techs who was looking after me brought me a poster-sized blank calendar where I would be able to track my day-to-day progress and write down my blood counts. I still have several of these calendars.

This was to be the first of intense, aggressive chemotherapy. After the initial treatment, the induction chemo, I would be allowed to rest for around 28 days. Then, I would have to return for a consolidation treatment, which would be the same drugs but at lesser doses and not as many days. I would need to undergo at least 3, if not 4, rounds of this consolidation chemo every 28 days or so after the previous round. The road ahead would prove grueling.

I was also seen by the floor doctor, by a doctor who was attached to Dr. Westervelt's office (or Dr. Westervelt himself), the hospital dietitian, and the physical therapist, who encouraged me to get out of bed, stay active, and walk the halls. She gave me a chart to put on my room's door and a sheet of sticker stars. I could put one star on the day for each walk, and I was told that 12 laps around the floor equaled a mile. I thought, gee, I can walk a mile, easily! What little did I know of what was to come.

I was also shown the floor cart containing VHS tapes and DVDs, and the bookshelf in the family room full of books. I had a combo video player attached to my television, so I could watch movies if I wanted to. I thought about some movies at home I could have the gang bring up to me. Most of the day was spent resting in bed, reading, surfing Facebook on my phone, and flipping through the TV channels. The food I ordered for my meals was good, better than average hospital food. I thought maybe this wouldn't be so bad.

My days went pretty much the same, and come the weekend, Jay brought everyone up for a visit. It made for a nice Saturday, and I think it was the first day I wasn't hooked up to chemo. I might have even walked outside briefly with everyone. I was feeling a little tired, but I wasn't having any nausea or vomiting, like you hear about so much when people talk about chemo. I thought maybe I was one of the lucky ones who didn't get a lot of the side effects.

My family couldn't stay too long, because of the long drive, and when they left I felt a surge of loneliness again. I mean, sure, the nurses would talk to me when they came to do what they needed to do, but it wasn't the same as having family around. I missed working, I missed my family, and I missed my pets. I especially missed Pepper and Athena; they are particularly close to my heart, though I adore all of our pets.

My nurses kept warning me about the side effects of chemo, but other than being tired, I was feeling rather normal. I wasn't aware that the side effects of chemo come about 2-3 weeks AFTER you've been given the drugs! My blood cell counts started steadily going down, and whenever my platelets or red cell counts dropped to a certain level, the nurses would have to give me transfusions to bring them back up.

Intermission

I'm taking a moment here to take a break from my story in the past. I want to tell you that as I'm writing this, in September 2014, I'm having some bad moments. Things have been going well for the most part up to this point, but today I took a turn. Went shopping at Walmart and it was all I could do to get through the store. My muscles felt as if I'd just run a marathon, and I felt weak and lightheaded. This is somewhat similar to the way I felt a year ago, before I knew I had leukemia.

However, I hadn't slept well the night before (insomnia has long been an issue of mine, made even worse by my cancer experience), and it may simply be that my body is telling me I need more rest.

Right now, it's Saturday night, so there's nothing I can do short of taking a trip to the emergency room. I've decided that I will go early Monday and get my blood drawn (I have standing orders up there as I've been getting blood checked every two weeks, up until my last appointment in August, where they said I could do it once a month) and wait and see if I get a phone call. Of course, if something feels seriously wrong or my condition gets very bad, I'll take the trip to the local ER.

This isn't the first relapse possibility that we've been through. Back in February, the oncologist's office called, saying my white blood cell count was high, and they wanted me up right away for a bone marrow biopsy. Fortunately, that incident turned out to be ok, and my biopsy came back clean.

I'm not due back in St. Louis until November, and hopefully this will be the last bone marrow biopsy I'll have to endure. I might have been done with them already, but I registered for a medical study Dr. Westervelt's office was conducting, and the biopsy is a part of that. Hopefully my suffering can provide them information they can later use to help other cancer patients.

As I'm preparing this third edition, it is now December, 2014. I had an uneventful trip to the oncology office back in November. I no longer have to get my blood drawn monthly, and I don't have to return for another checkup until March. Hopefully that will be after all of our major winter weather (I really do hate driving or riding in ice or snow).

I still have the ringing in my ears, something I just have to get used to. Of course, my regular doctor can give me a referral to an ear doctor, but I don't think there's much they can do about it, short of giving me hearing aids that emit a tone to override the ringing sound. And I'm not too sure I'm ready to start wearing a hearing aid at this stage in my life!

The abdominal pain from scarring still persists, though some days are worse than others. Another aspect of my life that I'll have to deal with. At this point, it's not so troublesome that it prevents me from sleeping, but sometimes it does. There's just no predicting when I'll have the good days and when I'll have the bad ones.

Crash!

Remember, we're up to about two weeks after my first session of chemo. I'd been feeling fairly good up to this point, tired of course, frustrated at being all alone and so far away from my family. On July 22, 2013, I had my first post-chemo bone marrow biopsy.

This one was just as painful as the previous ones had been, despite the pain medications given to me before the procedure. At least they used the opposite hip, which had just started feeling better after my first biopsy last month. My hip bones were beginning to feel like pincushions!

At this point, my red cell counts (hematocrit) were doing okay, sitting around 25, where normal range was 36.1--50.3. Any time the hematocrit dropped below 24, I was given two units of whole blood. But my white cell count was hovering around 0.2, when it should have been within the range of 3.8--9.8. My platelets were at 30, normal count should have been 140--440. Any time they dropped below 100 I was to be given a unit of platelets.

Now it's July 23 2013, and a lot of what I'm going to tell you from here is being supplied by my family, because I honestly don't remember very much of it myself. I started having blood in my stool, and I started vomiting blood. My legs had swollen up three times their original size. My right knee was especially bad. I sent texts to Jay showing him how swollen I was. My right arm was hot and swollen and extremely painful. My abdomen was causing me excruciating pain.

My condition deteriorated so rapidly that they decided to transfer me to their cancer ICU on the 5th floor. My nurse this day was Rachel; she was very sweet and caring and I liked her a lot. Several nurses and techs came into my room, and gathered up all my belongings onto a rolling cart. There was no rhyme or reason; they were just grabbing stuff quickly and piling it on the cart.

As they were wheeling me into the hallway on my bed (I was in such poor condition they didn't even want to put me into a wheelchair), I looked up at Rachel and asked, "Do I need to call my family?" She said later that it broke her heart the way I asked that question. She knew my family was far away and couldn't get to me quickly. I really thought I was going to die.

Jay told me later on that he'd tried calling and texting me several times, and wasn't getting any answer. He knew that they were transferring me, and didn't know to what room number or how to get the nurse's station on that floor. He was extremely worried and nearly ready to make the drive up just to find out what was going on with me.

I remember the nurses on the 5th floor finally getting me settled in, bringing in a bedside toilet since I couldn't get up and to the bathroom. The next few weeks are very hazy to me. I know I was on a lot of pain medication, not to mention the foggy brain side effect of the chemo itself (something I still struggle with to this day!). At some point I was put on a pain pump with a button I could push to deliver a boost of medication if I needed it.

Jay has told me that he and his sister Cindy (who lives in Florida and ran a fundraiser on Facebook for me, as well as started a page where I could post updates to a single place) had to read all my Facebook posts and edit them whenever they could. I remember I would fall asleep in the middle of a text message, or posting to Facebook, with my phone still in my hand! So you can imagine what my texts or posts would look like. Most of them were just incoherent gibberish. My family visited over the weekend, even bringing the newest Star Trek movie to watch with me, and I have absolutely no memory of having seen it. When I watched it again later on, not one bit of the movie was familiar to me. This was how badly my brain was affected by all of the drugs.

I spent 9 days on the ICU floor. During this time, my chart for my blood counts was buried somewhere in all of my scattered belongings. I couldn't find much of anything, and had no energy to get up and organize my things. I was sent for surgery on my right arm; it swelled so badly and they had to surgically remove infected tissue. I was left with an open 3 inch wound which they hadn't stitched shut. Instead, they would come once a day and remove the packing (the wound actually tunneled underneath my skin through the muscle), clean out the pus, and then pack a length of sterile ribbon back into the wound and dress it again with sterile gauze.

Jay recalls that during this time, my mind was like that of a young child. I had no comprehension for abstract thought, and I could amuse myself with the simplest of things, such as coloring or watching cartoons. My memory was extremely poor, and I would ask a question over and over when I'd already been given the answer. Or I would tell a story over and over again, forgetting that I had already told it.

My family was there during the day once when they came to remove the packing in my arm wound. Jay and Ally had gone to get coffee, but Tasha decided she would stay with me while they changed my dressing. She wants to be a veterinarian, so I thought it probably wouldn't bother her.

But she was very shocked when they pulled the pus-filled ribbon out of my arm. She said later that it looked like a tapeworm. It certainly had the color of one, all gross and yellow pus! At that point, she decided she had to leave the room, and quickly. It was a good thing she did too; it was a very slow and painful process when they repacked the wound. They had given me an injection of morphine prior to that, but hadn't given it enough time to work before they started to pack the ribbon back into the wound.

They had also sent me to surgery to have a camera put down my throat and into my stomach, trying to discover where my blood loss was coming from. They never discovered the cause of my bleeding. They also said that I had a blood clot in my right arm, though how I could have had a blood clot when my platelets were so low and I was freely bleeding in my GI tract, I'll never understand.

There's really not much more to say about those 9 days, because the only thing I really remember is how uncomfortable it was to have to call for a nurse just to go to the bathroom. And I would always wait to call until I had to go really bad. Then I would have to sit and squirm until someone could get to me. I was still suffering with diarrhea, as I was on very strong IV antibiotics for infection, and I couldn't even wipe myself; the nurses had to do it all for me. Talk about embarrassing!

The second day of August I was transferred back to the regular cancer ward on the 6th floor. At this point, my white blood cell count was above normal, but my hematocrit and platelets were starting to go up on their own, having recovered from the chemotherapy. I later learned by doing my own research on chemo drugs how the drugs actually worked. They were designed to find and destroy rapidly-growing cells, like tumor cells, or the bad immature blood cells I had in my bone marrow. But the chemo would also attack normally fast growing cell types in the body, such as the inside of the mouth, the lining of the GI tract, the skin, the hair.

So other side effects I was now suffering from included extremely dry, flaky skin (the skin on my face had turned red almost like a sunburn), open sores in my mouth, loss of big clumps of hair. Eventually, I just had one of the techs come in and shave my head with an electric shaver (we weren't allowed to have bladed razors, for fear of cuts and infection). This was a huge blow for me; though I had been expecting it, the sight of my bald head was something I would never get used to. Eventually, I tried to stop looking into mirrors at all. My mom, bless her, crocheted numerous hats in different styles and colors for me.

The only thing that relieved the monotony of my days were the brief Saturdays when my family would come up to visit me. They tried to get on the road early in the morning, but with two teenage girls to get out of bed on a summer morning that was difficult! I was happily anticipating their visit on August 10th.

But instead of a visit, I got a phone call. Dad had passed out while driving, and had driven his Saturn SUV off the highway (with the cruise control set at 70 MPH!), between a guard rail and a service road and into a heavily-wooded area. I was later told that the fire department had to cut down several trees to get the car out. Jay said they had hit several small trees and a larger one had finally stopped their momentum.

It was Tasha who called to tell me of the accident. She had just gotten into the front seat of the ambulance, with Ally and Jay in the back. Dad had already been taken by another ambulance. Tasha told me they'd been in an accident, and I started crying, and that got her to crying, and we sobbed our way through the conversation.

Dad had burns across his chest and face from the airbag, a bloody nose, and the expected bruising from the seatbelt. The passenger side airbag did not deploy, and Jay's knees had impacted the dash. Pictures taken later would even show the impressions of his kneecaps in the dash. He had several broken ribs from the seatbelt, and bruising across the chest, but his greatest complaint was that his back hurt.

Ally and Tasha, in the back seats, had minor bumps and bruises, likely a bit of whiplash (that goes for all of them!), and possibly broken tailbones. Ally got a little bit shocky immediately, even to the point of throwing up. Tasha seemed to be the least injured of everyone, and I guess that's how she got voted to be the one who called me.

My aunt Gennie, who lives about 30 miles south of us, had been called to come and pick them all up. The vehicle was a total loss and was eventually towed away to a salvage lot, where they were able to clean out all our stuff from the car. But this unfortunate incident meant that I wouldn't be able to see them at all that weekend and would have to wait a whole other week to see them.

And I was plagued with intense guilt. First of all, if they hadn't been coming to see me, they wouldn't have been in the accident to begin with. Also, I wasn't able to be there to take care of them. I think I cried off and on the rest of the night, my guilt and loneliness finally overcoming me.

My depression continued, and I finally asked my nurse if there was someone they could send in to talk to me, a counselor or someone like that. Very quickly, they got someone in to see me, and I think talking over my feelings, even to a complete stranger, really helped.

Homeward Bound

I had been hoping to be discharged and sent home before my birthday, but that wasn't to happen. The hospital staff were very nice to me on that day. The nurses had found a piece of construction paper, had made a nice birthday card, and had passed it around for all the staff to sign. I also got a little button to wear that said "It's my birthday!", and received a cupcake from the kitchen that had a single birthday candle. It was the first time I'd ever had to celebrate a birthday away from home.

I was finally discharged on August 20th. Jay had purchased a small Ford Escort from a coworker, to replace the SUV that they had been using to come and visit me. In fact, he'd arranged to make payments on it, to pay it off in a few weeks, but everyone at the factory where he worked had taken up a collection, and given him enough money to buy the car and get it registered. This was the first time I'd ever seen what we came to call the "little car". But I didn't care if it was a horse and buggy, I was free and headed home to see my family, my dogs, and my horse!

But, life at home was not to be easy. I still had the central IV catheter, which I would keep until I had completed all my treatments. This meant a lot of effort just to take a shower; the site couldn't get wet, so I had to tape plastic over it any time I got into the water. Or, I would often just take a bath and just take care not to get it wet.

I also still had the large wound on my arm, and though I would be visited a couple times a week by a home health care nurse, the packing and dressing still had to be changed daily. This task fell to Jay to handle, as it wasn't something I could do myself. He was always terrified to do it, afraid he would push too hard with the long Q-tip and hurt me, or hit a blood vessel and cause me to bleed. He got so good at it, however, that he was complimented by a nurse practitioner who changed it during one of my many follow up appointments in St. Louis.

Upon my discharge from Barnes, I was having a daily fever, usually in the late afternoon or early evening, so Jay bought me a temple thermometer so I could monitor my temp frequently. Anything over 101 degrees was considered a "fever", but I would often take Tylenol even if I was sitting around 99.5 degrees, just in case.

I found it very difficult to get around, and even went as far as to borrow a bedside toilet from Aunt Gennie, one she'd had around when my elderly grandmother lived with her. Jay and I switched sides of the bed so that I could be closer to the door, and have enough room to put the toilet chair next to the bed. I'd discovered that when I had to go, sometimes I couldn't hold it long enough to get to the bathroom. It took a lot of effort just to get out of bed.

I was also still very fatigued, and taking OxyContin and oxycodone on a regular basis to control the pain. The chemo treatments had made my very bones hurt, so deep inside that a massage or a hot bath couldn't touch the pain. I would regularly fall asleep sitting up, or just zone out for periods of time. I found myself freezing all the time, and was frequently bundled up under blankets even though it was the dead of summer. I wasn't able to climb the stairs to the house very well, and only managed to make a few quick visits out back to see Athena. The poor thing, she had no idea what was going on, though she was extremely gentle with me, sensing my weakness.

Around the first of September, I started getting more fevers. They were coming more frequently and getting higher and higher. I also broke out in large bumps under the skin of my arms. These were perfectly round, soft bumps that seemed to be right under the skin, not in the muscle. But when my fevers got to 103 degrees in spite of using Tylenol, I knew I had to call the oncologist.

Consolidation Chemo

I was readmitted to Barnes on September 4, 2013. This time, Tasha decided that she would stay with me, to offer her help and company. She had completed her mini-semester at the college. I was grateful for her presence. I was put back on the strong IV antibiotics (vancomycin being one of them), and put into one of the isolation rooms on the floor. This was a special room with an HVAC system that kept a positive pressure inside the room; whenever the door opened, the air would rush outside the room, keeping air from the hallway from coming in. However, this meant that I had to keep the door closed at all times. In fact, it was even alarmed and would sound a tone if left open for too long.

I hated this room. I had the same view out the window of the wall next door, but with the special air system in the room, I couldn't control the temperature very well. And I definitely couldn't turn it off, so I was constantly being bombarded and chilled by drafts from the vents.

The doctors drew copious amounts of blood, it seemed, and I was grateful for still having the central line in my chest. They continued to monitor me very closely, and as the days passed and I kept having fevers, the lab reports started to trickle in: no infection, no infection. The doctors were stumped.

Their next step was to biopsy some of the lumps that had formed under my skin, to find out what kind of material was inside and to hopefully grow an organism in the lab so they could treat it. This biopsy wasn't as painful as the bone marrow biopsy; the surgeon numbed the skin, and took a small punch which punctured a circular hole in the skin. This skin was sent off to the lab as well. Then he took swabs of the fluid that came out, cleaned the area, and put a stitch or two into the skin. He did this on a couple different places on my skin.

Several days went by, and the routine remained the same. Eat, wash up, watch TV, eat, go to sleep, get woke up every couple hours. I was put on Tylenol regularly, not just if my temp went above 101 degrees. It seemed to keep the fevers at bay. But whenever they discontinued the Tylenol, the fevers came back.

They even went so far as to remove my hone, thinking it was infected somewhere in the catheter, and that didn't help resolve the fevers. They replaced it with a new one (in a different vein) a few days later. Finally, they pulled all my bottom teeth, which weren't in the greatest of shape, thinking perhaps they were the source of infection. They even inserted a special type of camera down my throat, looking at the back side of my heart for any infection hiding there. And I had numerous CT scans, each one revealing nodules of some kind in my spleen, liver, lungs, and abdominal area.

Eventually it was discovered that the material inside my lumps was a fungal infection. Candida fungus, to be exact, the same type of fungus that causes thrush in a baby's mouth or a woman to have a yeast infection. So it was just an ordinary organism that we have on our skin and all around us on a regular basis, allowed to overgrow because of the reduced capacity of my immune system.

I was put on antifungal medications, one an IV and the other a pill. My family visited on Saturdays whenever they were able. Once the fevers seemed to have vanished, they decided I was ready to begin the first round of consolidation chemo, and so I was in for 3 days of the 24-hour chemo and 2 days of the injected chemo.

I must at this point mention my sister, Dana Jordan, who lived in Michigan near my mom Coy and stepdad Dan Jordan (he adopted me, so really he's my dad too), my other sister Becky Rottenbucher, and my brother Matt. She started the idea of a fundraiser, and they all went to a lot of work to pull it off. My brother's girlfriend's (Maria Meiklejohn) parents owned the bowling alley in the small town where I grew up, and they decided to hold the fundraiser there.

I know everyone worked really hard on this fundraiser, soliciting donations of goods and services around town to give away as prizes and for the silent auction they held. I'm not sure what all they did, but they ended up sending us a lot of money, and we were very grateful for it. At the time, though I had qualified for disability, I wouldn't see any benefits until January, and money was very tight, the bills often behind. I'm forever grateful for all the hard work my family went through to help me as much as they could, as well as the kindness of total strangers like Maria and her family, and all those who attended and made donations for me.

Again, I felt rather fine the first week or so after finishing this chemo, but then my blood counts began to drop again, and I was constantly fatigued. My skin dried out, my mouth again had sores. I think I had several fevers. Any time my red cell count was extremely low, I would be very tired. And again, I looked forward to my family's weekly visits.

At some point, and I don't remember when exactly, an old high school friend, Denise (Mercer) Blackwell, friended me on Facebook. I'd only had a few people from high school as friends on Facebook before, but it was really neat to start getting back in touch with some of them. After all, it wasn't like I had a whole lot to do with my long days! So, I started searching for more friends using Facebook, and adding them to my friend list.

I was hospitalized for 33 days this time. When I was finally sent home, I was still on the antifungal medications, one of which was so expensive that my copay with my Medicaid insurance would have been $2,000 a month! Thankfully, the hospital social worker was aware of a program for low-income patients through the drug manufacturer and so I would be sent the medication at no cost to me.

The IV medication would be shipped directly to me in a cold container, and so home health care had to come out and teach me how to run my own IV in the mornings. I very quickly became so skilled at doing this that I was able to run it in the car on the way to St. Louis for appointments! We look back now and laugh at the astonished looks we saw on the faces of other drivers as they passed us on the highway. I can't imagine what they were thinking when they glanced over and saw an IV bag hanging from the visor!

My consolidation treatments continued. I was admitted to Barnes on November 5, 2013, December 3, 2013, and January 7, 2014 to finish up the last 3 rounds of chemotherapy. I was also admitted once between these dates, staying at Barnes from December 14 to December 20, 2013, because my platelets were remaining so low and they were afraid that I might start bleeding again.

I was so glad to be able to spend Christmas at home with my family. The previous year, I had just been diagnosed with Guillain-Barre syndrome, and I was in the hospital an hour from home on that Christmas day. I didn't want to spend another holiday in the hospital!

It was during one of these visits, I'm thinking in November, that Tasha and I met Sam White and his wife Pam. He, too, had leukemia and was going through the same things I was, and his family was far away too. We kind of checked in on one another. Pam was a music teacher, and she and Tasha hit it off right away (Tasha plays the violin). It was nice to have other people to talk to.

We also met Sarah Colby, the lady in charge of a hospital program called Healing with the Arts (or something of that sort). She had an entire art room on the ground floor of the building, and would come around every Wednesday with craft items for patients to use to make buttons and magnets. Tasha and I visited her several times.

She also knew how much I loved horses, and went out and bought a very thick horse coloring book. I enjoyed coloring the pictures of the different horse breeds, and often gave them away to nurses. But when I went to return the book to Sarah when we were getting ready to leave, she said it was mine and that I should take it home with me. I still have it, and to this day will still color in it once in a while.

Tasha learned the art of origami, and would often fold cranes or three-dimensional stars, even boats that could actually float! Around the holiday she made several Santa Claus origami, even using cotton for the beards and hats, and gave away quite a few of them to the staff. They were a big hit. The 6th floor also organized a Christmas ornament-making event; it was a lot of fun and even some of the doctors participated!

Since I was in the hospital the week before Christmas, the nurses had gone out and done Christmas shopping (something I imagine they always did for patients who had to spend the holidays away from home). They came into my room one day with a very large gift bag filled to the brim. I got a pair of warm, fuzzy pajamas, some slippers, several arts and crafts projects, a ceramic Christmas tree that lit up, some holiday-themed window clings, a table-top ping pong set, Uno cards, a fluffy blanket covered in snowmen, and a variety of other things I can't quite think of. But all of the gifts were well thought out, and I really appreciated them. There were even several gift cards, adding up to over $100! I was surprised at this!

Though I was still fatigued, and only weighed in at around 98 pounds, I was almost excited to return to the hospital in January for my final chemo session. It would be good to get it over with, and start getting back to my normal life. I thought I would be able to return to work in just a few months, and be back to the person I was B.C. (before cancer).

The Siteman Cancer Center at Barnes-Jewish Hospital in St. Louis has a special brass bell hanging on the wall on the 7th floor. This bell is for patients to ring when they are leaving for the last time, when they are cancer-free. I was being discharged on a weekend, that being the only time my husband was off work to make the drive to pick me up. But the staff wanted me to ring the bell anyway, so I had quite a crowd of nurses and patient care techs who took me to the 7th floor and posed with me for pictures. Tasha took a video on my phone when I rang the bell, and even though the floor was mostly deserted, the sound of the bell ringing attracted the attention of the staff in the lab, and I got a big round of applause. It was a bittersweet parting, but I was happy to be heading home for the last time.

Leftovers

Even though the nightmare of chemotherapy was over with, I was still left to deal with the effects of it, some of which may or may not be permanent. The chemo brain fog I mentioned before (or did I? Ha, ha.) still persisted, and my memory, even of things that had occurred before the chemo was spotty. I noticed that my brain processed slower than before, as though I was a computer with not quite enough RAM to operate quickly.

The bottom of my feet had become numb due to the idarubicin, like they had fallen asleep but hadn't gotten to the pins-and-needles stage. The doctors told me that this was something that might be permanent, if the nerves for touch in my feet had been irrevocably damaged. This is more annoying than anything else, especially when wearing tennis shoes. It gives me the sensation that I'm breaking in a brand-new set of shoes, and I've found that wearing wide-width shoes seems to help some. However, I'm just more comfortable without shoes.

I've also had a ringing in my ears, something I've just noticed within the last couple of months. It's usually a high-pitched shrieking, a tone that reminds me of the sound cicadas make. Sometimes, in my right ear, it changes to a very deep tone so that I'm hearing different sounds in both ears! I've read that this could be due to the chemo damaging the hair-like structures in the ear that pass sound waves to the nerves going to the brain. I'm not really sure if there's anything the doctors can do for this.

I'm still not as strong as I used to be, though that gets a little better each week. If I have to, I can lift a 50 pound bag of dog food, and I've been helping to unload Athena's large bales of hay from the back of the pickup (we usually just roll them out).

I'm still underweight, and not having any teeth makes it a bit harder for me to gain. I have a top denture, I've had those since before the cancer. But I can't wear them without one on the bottom jaw; I'm afraid the teeth will cut my gums. But I'm learning ways to help myself gain weight, and as I gain some of my muscle mass back, that will help too.

Struggling to overcome these obstacles often leaves me feeling depressed. I sometimes have to remember that I'm not the same person I used to be, and remind myself that I may never be the person I used to be. I have to make a conscious effort to choose what type of person I will be in the future.

I've also got a torn rotator cuff tear in my left shoulder, I think as a result of a fall in the hospital when my heavy IV pole got stuck while I was going into the bathroom, and knocked me over (though it could be from an old injury years ago). I've been getting steroid shots to help with the pain.

I still have lesions of some sort in my lungs and spleen, likely the result of scar tissue from the severe fungal infection I'd had. On occasion, and for seemingly no reason, I'll have pain in my left side, sort of like the pain I remember having when I'd run too much in gym class. My hormonal system is finally starting to return to normal (the chemo caused a menopause-like state for almost a year), and I have a large cyst (likely benign) on my right ovary that my doctors are closely monitoring.

And, of course, I have the scarring. I'm left with numerous scars, from the hone that was placed near my collar bone, the surgery on my right arm, and the collection of skin biopsies they took while looking for the source of my infection. These are just visible scars, there's no telling what my insides look like now days! My hair has grown out about 4 inches, and now seems to be a light brown shot with silver. I can't tell yet if it's going to be very curly, or just wavy like it was before, but it's going to be interesting to see the end result. And it's just long enough to be a pain in the you-know-what!

Remission

Though I had been in remission since my first post-chemo biopsy in July, I would not be considered "cured" until I had remained in remission for 5 years. I would still have to return to Dr. Westervelt's office every three months, get blood drawn regularly, and visit the Infectious Disease doctors who were treating my fungal infection. I was still on both antifungal medications, and so I returned home with the IV catheter still in my chest, something I would have to be very careful with at home.

I was still very underweight, still weak, and just starting to grow my hair back in. I was very sensitive to the sun as well, having spent almost a year inside. But I was eager and anxious to get back to normal, and I was easily frustrated whenever I found some task I was unable to do.

I would become depressed easily, as I realized that my life would more than likely never be the same as it was before. I was hoping to return to work in March, or whenever I could get my hone taken out; I certainly couldn't work around cars and car parts with IV tubing hanging out of my chest!

But when I finally got the hone removed, I still wasn't strong enough to go back to work. I knew I would have to be strong enough to carry car batteries, and to install them, and I couldn't even carry a pail of water to Athena's stall. I set my sights for going back to work in August, and the nurse practitioner at my oncologist's office wrote me a prescription for physical therapy.

However, I soon discovered that Medicaid doesn't pay for physical therapy for adults (seemed silly to us; wouldn't they WANT you to get back to work quickly?), and so I was left to find some way of getting myself back into shape.

Tasha and I decided to start riding bikes while Ally was in school, so I could use Ally's mountain bike. So we used the car to map out how far it was to and from certain landmarks up and down our dirt road. I soon discovered that "it's NOT just like riding a bike", though the simple act of learning to ride again certainly helped my balance and started strengthening my legs.

I managed probably a quarter of a mile the first few times, then graduated to a half mile, and finally a full mile. By this point in time, the days were getting too hot to be out riding, and since there were rice fields all around us this year, riding at dusk with all the bugs wasn't a good idea either.

Even with this exercise, I was still having trouble getting up off the floor by myself, carrying a laundry basket full of clothes, and cleaning Athena's stall and pen. I came to realize that perhaps I would never be able to go back to work. This depressed me very much, as I realized I might just be a burden on my family and have no real way to contribute to the household.

During this time, my friend Denise called me, wanting to interview me for a blog that she was writing about cancer patients. We talked for quite a while, about anything that came to mind, and found that we had a love for horses in common. I also discovered that Denise was a published author, and I talked to her about having self-published my own book, Once Upon a Western Way through an online e-book publisher called Smashwords in 2012.

Through all my trials of the last couple years, I really hadn't thought much about my book, but I had started writing another one, a self-help book on caring for horses. I had written perhaps half of what I wanted in the book before getting sick with cancer. Denise encouraged me to continue writing and urged me to publish. I told her that I had actually hired an agent for a year, to try to sell Western Way to a publisher, and that it hadn't worked.

I also told her of the current project I was working on, called Keeping a Backyard Horse, and how I was hoping to publish it with Smashwords and help prevent some accidental neglect of horses due to their owners just not knowing how to care for them. I told her how many times I would see horses in someone's back yard, with a huge bale of hay, looking like they were starving, likely due to needing to be dewormed, something horse owners need to do regularly. Or how many people didn't know they had to keep their horse's feet trimmed down or their teeth filed so they could eat properly.

It was then that Denise told me a little about her book, and how she came to publish it. She asked if mine was available on Kindle, and at that point in time, Smashwords didn't distribute to Kindle. She told me to check out a website called Create Space.

We don't have regular internet at our house, we're too far out for anything other than satellite, and I refused to pay the high prices the one company in town was charging. Since we had unlimited data on our pre-paid cell phones, we had done all our surfing and social networking on our phones. But in order for me to publish, I would have to have a phone with a wifi hotspot, or get internet at the house.

I booted up our old laptop (the kids had broken the screen on it a few weeks after we'd purchased it several years back, so it was more like a PC, having to be hooked up to a regular monitor). However, I discovered that we'd likely contracted a virus in the laptop, and all my work was gone, save for a single copy of Western Way. I was very sad. I had lost my first draft of Backyard Horse and Triple Heist, a crime novel I had been working on.

I sent out a status update on Facebook, asking for recommendations on laptops. One of my cousin's girlfriend replied that she had one for sale. So we messaged back and forth some, Jay looked it up and read reviews on this particular laptop, and we discussed getting it.

To Work, or Not To Work?

The laptop was only $200, and I arranged to send a bank-to-bank wire transfer (she's about 2 hours north of us, and we weren't going to St. Louis for appointments any time soon), and paid for the shipping. The laptop arrived at the house on my birthday (we'd decided this was what I was getting) and in good condition. It had been set back to factory defaults, and should have been ready to use.

However, this was a newer laptop than what I was used to, and had Windows 8 rather than Windows 7 (I had barely gotten used to Windows 7, not having used it much), and required a password just to turn the thing on. I had spoken with Leah on the phone, and she'd given me the password, the password wouldn't work.

She messaged me the next day, still concerned that I couldn't get into the computer. Come to find out, I had spelled the password incorrectly (stupid cell phone black hole in my house), and once I corrected the spelling, it booted right up. I was ecstatic. Now I would be able to try and recover my work, and get going again with my writing. Ally had found my handwritten notes for Backyard Horse, though I had lost nearly 200 pages of my crime novel to the computer virus (or whatever had randomly deleted my files).That would be the hardest part to recover.

But first, I had to get a word processing software for it, as it only had a trial version of Microsoft Office 2010 on it. So Jay looked on E-bay for the product code to activate Office 2010, and we couldn't find any that looked like a good deal. Or that looked to be from a reputable dealer.

So, we decided to go to Walmart and buy the Office 2013 software, the newest out at this time, but the only thing they carry are the product codes, not the CD with the program on it. The only other thing that was available was Office 365, and I'd never even heard of that. So we went home to think about it before buying something so expensive.

We called a customer service number that I found online for Microsoft, explained the situation, and the person on the phone said we could put any product code into the Office 2010 trial and it would work. So we went back to Walmart to buy the Office 2013, and now, of course, they were sold out.

So I was left with Office 365, and not knowing anything about it, I read the back of the package. It seemed that this was a yearly subscription, something I would have to continue to pay for in order to use, and I didn't like that option. But it was cheaper than Office 2013, and we decided to give it a try; if I didn't really like it, it would expire in a year and I could get something else.

We returned home, and I used dad's cell phone to generate a hotspot to plug my product code into my Office trial to activate my new software. And that didn't work. It kept telling me that I wasn't entering an Office 2010 product code. The customer service representative had been wrong.

Since I was already using dad's phone as a hotspot, and had already paid for Office 365, I decided to go ahead and try to download what I needed to make it work. Little did I know that the download would take most of the night, and use up all of dad's data for the month. And it didn't even finish downloading! I was convinced that all these difficulties were trying to prevent me from getting my new work uploaded and published. I was getting very frustrated.

Dad bought more data the next morning, and I was able to finish my download. Finally, I was able to start getting my work put into the new word processor, and feel like I had a purpose again. Up to this point, I had been feeling a bit useless. Sure, I was pulling in a disability wage, and taking care of the house, cooking and doing laundry, but I was still feeling a bit unfulfilled. I was always one who liked to stay busy, and over a year of staring at four walls was making me stir crazy!

Publishing the Old-Fashioned Way

It used to be extremely difficult to get anything published, outside maybe an article in the local paper. There were a great many big-time publishing houses, such as Random House or Pocket Books. But these publishers had become so saturated with manuscripts from authors everywhere, they decided not to accept any work from any author who was not represented by a literary agent.

When you hear the term literary agent, it might make you think of someone in a huge office in Los Angeles or New York City, someone who would obviously charge a lot of money for their services. I had found my agent by surfing the internet years and years ago, and had taken part of our income tax return to pay him $400 for a year's contract, and sent him my manuscript for Western Way. I received 4 reports over that year, stating places he had supposedly submitted my manuscript, without any luck. When it came time to renew my contract, I decided it just wasn't worth it, and gave up my dream of ever becoming a published writer.

I had an English teacher in high school who had written a book, and he had gone a different route with publishing. He had actually gone to a printer himself, and paid to have a certain number of his books printed and bound. This was definitely not an option for me, as we lived paycheck to paycheck and only had any real extra money around tax return time. And I had a growing family as well, so I had put the thought of writing out of my mind.

In early 2012, I finally got a "smart" cellphone, and I started using the electronic book reader Nook on my phone. At first, I simply read many of the free books offered, and eventually I started buying a few of my favorite authors a little at a time. But I noticed that a lot of the free books had come from a publisher called Smashwords, and I got the urge to check them out. It was then that I was first introduced to the new trend of independent publishing.

Independent Publishing

The term independent publishing is being used to describe a self-published author. When I first checked out Smashwords' website, I learned that they were a platform for publishing uploaded works into formats for e-readers on smart phones and tablets. They had a computer program that would take an uploaded document (in a standard .doc file type) and convert it to other types of documents (such as .epub, .rtf, .txt, and .mobi) that e-readers were capable of viewing.

I also discovered that there was no up-front charge for this service, that Smashwords would take a percentage of each sale, using that to maintain the website and their software, and the author would then be given the remainder of the work's sale price as a royalty. I thought about this for several months, letting the idea stew in my brain, before I came to a decision.

I finally decided to go for it. I mean, what did I have to lose, except a little bit of time? I downloaded Smashwords' Style Guide on the Kindle app on my phone, and began to read about the specific formatting they required in order for their software to convert the file into the different file types. I found my old copy of Western Way in my computer, and got to work, page by page.

Some of the formatting requirements were fairly easy. For example, an e-book doesn't require a gap between one chapter and the next, as obviously there are no physical pages. And you couldn't gauge that anyway; a book will look different on different readers, and have more or less pages depending on the font size the reader has it set for. So all that I had to do for that was delete the line spaces I had put in to start new chapters.

They also require that there be no "tab" for the first line of a chapter, and this took me a little bit longer to figure out. However, their Style Guide was very clear, and my word processor at the time very similar to theirs, and so I figured out how to format a new file to automatically indent at the start of a new paragraph.

Then came the challenging part: creating hyperlinks to each of my chapters. At first that was like Greek to me. I knew whenever you type a web address, it would create a hyperlink (the website would turn blue in the text and you could click on it to visit that website), but I didn't know you could do that with any text, or even realize there was a reason you would want to. But in an e-book, you can't easily find chapter six, unless the book has a table of contents and lists all its chapters. So I had to learn to do that, and frequently I got the steps backwards; I would hyperlink the chapter heading to the table of contents instead of the other way around! But, eventually, I got the entire manuscript of Western Way formatted as outlined in the style guide, and I was nearly ready.

But, in order for my book to get into Smashwords' premium catalog (and from there to e-readers such as Nook, Apple iBooks, Kobo, Scribd, Oyster, and several others), it had to have a book cover. Now, I was at a loss. I am definitely NOT the artistic type, and I had no idea what I wanted to use as a book cover. I didn't have the slightest idea how to create one! So I was at a standstill for a while as I let my mind work on that problem.

Eventually, I discovered a copy of a painting mounted on a cardboard backing that a very good friend of mine had bought at a flea market. It had a castle in the background and a beautiful green pasture with horses in the foreground. He bought it for me because of the horses. I wanted to use it, but was worried about copyright issues. However, I examined it very closely, and found no signature or identifying marks of any kind on it, so I assumed it was something mass-produced.

I used my digital camera to take a picture of it, cropped it on my computer, and added my name and title. This took several tries, as I worked out the font size and coloring that I liked best. Then, I uploaded everything to Smashwords.

Once Upon a Western Way went live on Smashwords on April 23, 2012. Not long after that, it passed a manual review and was put into the premium catalog. For better or for worse, I was now a published author!

If you're not that good with a word processor or formatting (though the Style Guide is super easy to follow), Smashwords has a list of people who have published with them that can, for a small fee, reformat your work so that it's acceptable for publishing with them. I don't know what they charge or how it works, because I've never used them. But you can get in contact with Smashwords and they'll email you a list of people for you to contact.

They also have people who are experienced at making book covers as well. I'm not sure what the fee would be for that, I think the author of the style guide said something about cost, but I can't remember off the top of my head. You can get in touch with them with the "contact us" link on their website and they can help you out.

However, with marketing, I have zero experience, and I really hadn't uploaded my book to make a lot of money. So, aside from telling all my friends and family about it, I really did nothing to push sales of my book. I sold a total of 4 books in the first year through Smashwords. I always tried to figure out who purchased my first one, and as far as I could tell, it wasn't anyone that I knew personally.

That first Christmas, I ran a coupon for the holidays, trying to get people to maybe buy it as a gift for someone, and when that didn't work, decided to run it as free for a while. During this time, I actually had a lot of downloads, almost 300 from different retailers. It was enough for me; my story was out there, and people were reading it.

Fast-forward to very recently, when my friend Denise had told me to check out Create Space. At first, I didn't realize this was how she had published; she talked a lot about the Kindle, which was one e-reader I had been unable to reach through Smashwords. But as I idly surfed through their site one day, it hit me that this was a way I could actually get published in print, without having to put up a lot of money and buy a huge lot of my own books, then be responsible for trying to sell them.

Create Space works very similar to the way Smashwords does, but they publish not only for the Kindle but in actual print as well. It's a site run by Amazon.com, and the way it works is, in my opinion, a brilliant idea.

Once your work has been uploaded and is available, anyone can order it. Once an order is placed, the book is then printed for them and shipped. Being a part of Amazon.com, a book can potentially be bought by anyone, anywhere in the world, and potentially reach even bookstores and retailers. But the start-up doesn't cost the author a thing, as the book isn't actually printed until after it's ordered and paid for.

The author would also get a royalty off the sale of each book, after Amazon and Create Space took their cut, at a rate of 70%, which is actually a very good royalty percentage for an author. And anyone can do it; you don't have to come up with an agent fee, one that you may have to pay repeatedly, and wonder if you'll ever get published.

An added bonus is that the book is properly formatted for use on the Kindle e-reader app as well, and that opens up a new avenue for the author. I myself am partially loyal to the Nook, as that was my first e-reader and the one that had my original book available to me (I've never had an iPhone, for which I would have used the iBooks e-reader). Not that I wouldn't use the Kindle, but I was just more comfortable using the Nook. Since the first printing of this, I've learned that when CreateSpace sends a file over to Kindle Direct Publishing, it is NOT formatted for the Kindle, though it can still be read using one. But chapter hyperlinks don't work, and there are numerous other cosmetic issues as well. I've since fixed that and am still working to perfect each of my files.

They, too, require book covers (obviously a print book would need one, but Kindle requires that as well), but Create Space, in addition to offering several types of paid services for formatting and publishing, has an online cover creator, or a list of people adept at designing the covers for a fee. I tried to use the same image I had before, for Western Way, but the image resolution was extremely low (no doubt my cheap scanner) and I was having a difficult time getting the image into the book cover correctly. The cover creator offers a wide range of cover templates, colors, font sizes and colors, and different elements you may or may not want on your cover. It's very user-friendly.

And so, this is where my new life started to turn around. Simply by friending me on Facebook, and speaking some encouraging words, my friend Denise opened a can of worms, so to speak, and got me working toward a goal. I didn't start out to be a writer, even though I enjoy writing immensely. But, since I wasn't able to go to a regular job, I had nothing to lose by trying to get my work published in this way.

Labor of Love

Of course, publishing with Create Space wasn't a walk in the park, either. They, too, only allow uploads of certain file types, and I discovered that my Office 365 did not automatically save files in the proper file type. I had to learn how to change the file type whenever I saved my work (remember, when I did this with Smashwords, my current software program automatically saved it correctly, so I had no idea there were different file types with the newer software).

The process was also slowed by the chemo brain fog that still troubles me to this day. I've noticed that my brain processes things slower these days. Sometimes I'll stop in the middle of a sentence and have to think hard to pull out the word I was trying to use. I find myself having to go back and read things I've already written because I can't remember if I said this or that. I used to have a nearly eidetic memory for physical places and words in print, but now I find myself having to look to the sun to tell east from west! And I frequently have to ask someone, "What do you call it when...(fill in the blank)". That's extremely frustrating for someone like me, whose best subject in school was always English. It's a good thing there's an app for that; I'm constantly using the dictionary app on my phone to look things up, or the Google search engine to find proper spelling (sometimes my words are so mangled even the Office spell checker gets confused)!

I have been slowly working to rewrite my crime novel, Triple Heist, something I started many years ago, but I'm having some difficulty with that one. I had several hundred pages of it when my computer randomly decided to delete my files. Since I remember some of what I had written, though certainly not all of it, I'm having trouble getting some of the descriptive parts right. By that I mean, so the reader will be able to "see" the setting or the character; since I already wrote most of the beginning once before, I already know those things, and it's hard to remember that maybe the reader doesn't because I haven't described it yet (in the new version).

For a print book, size does matter, and Create Space offers a wide range of sizes, but their recommended size is 6" by 9" (they say this gets you out to retailers the best), and so that's what I chose when "building" both Western Way and Keeping a Backyard Horse. A standard word processing file, when opened, assumes a size of 8.5" by 11", the size of a standard sheet of printer paper. But Office allows you to easily change your size, and if you retain the default margins, you'll easily stay within the "trim size" (from what I understand, this is the space used for binding the pages and for cutting them off) of your chosen size.

One thing to keep in mind: the size of your finished product and the size of your text will ultimately decide how thick your book will be, and how much it will cost to print, so keep this in mind if you're interested in publishing. And if you're writing non-fiction, like my Backyard Horse, you'll probably want to include a table of contents. This was difficult for me; as I added, deleted, or changed text, it changed where my chapter headings were situated. My proof copy of Backyard Horse has several places where the chapter heading is at the bottom of the page, instead of at the top of the next. I redid this many, many times and got really frustrated with it.

I lost track of how many times I corrected something, re-uploaded it, got rejected by the computer checker, corrected it again, and uploaded again. But even through my frustration, I realized I was getting closer and closer each time.

I had trouble with the cover as well. At first I wanted to use my original cover for Western Way, but I quickly realized that the resolution on my image just wasn't good enough, and decided to use one of the cover templates.

I was really torn about this, though. Since this book had already been published, I wanted to keep the same image, in case someone who'd bought it for their Nook or iPhone wanted it in print. But I'm just not good enough at manipulating images with the computer, and I discussed this with Jay and Tasha at length. We all finally came to the decision that there wasn't anything I could do to fix the original cover image, and so I just got down to designing a new one.

My image for Backyard Horse, however, was sufficient as far as resolution, but not for height, and I had already added the title and my name to it. The cover creator I was using had specific places for the title and author's name. So I chose a different image that I liked just as well, that I could get a bigger crop from, and used that. It shows my horse Athena laying down in her pen, all four legs folded under her and sound asleep. If that's not the pose of a well-cared-for horse, I don't know what would be!

Backyard Horse went live on Smashwords and Create Space (for Kindle) on August 29, 2014. Though it wasn't actually my FIRST book (Western Way having been previously published on Smashwords), I came to consider it my first book since it was the first available in actual print. I had a proof copy sent to me, and also used the digital proofer provided by Create Space. It allows you to see exactly how the book will look in printed form, and you can scroll through the entire book just as you would if you were physically reading it.

Western Way became available on Kindle on August 29, 2014 as well, though the print version took a little bit longer to go live, as I was still trying to get my original image on the cover. I sold one copy of each on the Kindle on August 30th. Western Way went live for print on Labor Day, and my labor of love was finally complete.

Marketing

I sold my first paper copy (one of Backyard Horse) just 6 days after it had been offered in print. I'm still not sure who purchased this copy, it wasn't anyone that I personally know. I also sold a second copy of it on Kindle. In just a week's time, I had made almost as much money from sales I had in the two years Western Way had been originally published!

But this is where the hard part comes in. Eventually, my work will be listed in catalogs that Create Space will send to book retailers and libraries. For now, it's up to me to sell my book. And selling myself (for that's what you're really doing) has always been hard for me. I feel uncomfortable asking people to buy something from me. I guess I'll never make a good saleswoman.

I've made some efforts to help advertise my work. I've contacted the local newspapers, the local television station, and even newspapers in towns I used to live in, offering to tell the story about the new trend of independent publishing (and get the word out about my books). I've sent a letter to the high school asking if any of the English teachers would like to have an author come to talk to their classes. In a small town of only 326 people, I don't imagine there are many other authors who live here!

I've also started a Twitter account, which I'm using with the express purpose of selling my work. I'm new to Twitter, as I've never had one before, so I'm still learning the ins and outs of it. But I have noticed a huge leap in the amount of page views I've had at Smashwords since I started advertising on Twitter, and so I'm going to continue to use it as a venue to advertise.

I've also started an author website with Simple Site.com, and I've had about 500 hits on the site in just a couple of days. I have links to all my books in all their forms, and I even have a page for news and upcoming events.

Also, I'm using Facebook to advertise. Of course, all my posts on my regular Facebook account can be seen by all my friends, and I plug in an advertisement once in a while. But I also started a page that I've come to call my 'author page', and I have the security settings on that page set to public, so that anyone on Facebook can see my posts.

My proof copy of Western Way hasn't yet arrived at the time of this writing, but I've ordered 3 final copies of each of my books to physically have with me. I plan to donate one or two to the local libraries, and even send one to the small public library in Flushing, Michigan, where I went to high school. I also plan to donate to the 6th floor at Barnes-Jewish Hospital.

I've ordered 500 business cards from Vista Print online, and I have my website, my Facebook author page, and my Twitter on the cards, along with my name and the fact that I'm an author and publisher (I am a publisher; Create Space is only a printer). When I get these cards, and my final copies of my books, I plan to approach someone at Hastings in town, hoping to set up a book signing, or if nothing else, convince them to order some of my books to keep in stock.

In my experience with Twitter, I've discovered several websites who will assist independently-published authors, with advertising, with getting Twitter followers or making tweets about your books, but these charge a fee for their services, so it's not something I'm considering at the moment, though I'll keep it in mind if I start making a little extra money. Facebook, too, will promote your page for a fee. I will look further into these services if and when I have a little extra money to.

Right now, I'm just counting on my Twitter followers to retweet anything I post regarding my books, and some are really helping out with that. Anytime I get a retweet, I reach other followers who may not actually be following me, but following someone who follows me. In other words, I can reach out to a lot of people using Twitter, assuming I spend a lot of time sending tweets and gathering followers.

The Butterfly Effect

I'm hoping that My Butterfly Cancer will be an inspirational tale for anyone with cancer, or other life-changing illnesses, and encourage them to pursue other avenues after their recovery. Or maybe my story will simply give them hope, hope that they WILL recover, that they can fight their way through. I could have just stayed at home, feeling useless, depressed, and unable to work. Instead, the butterfly effect starting with cancer, and a simple friend request on Facebook, and the support of my family and friends has turned my life around.

I will be donating part of my proceeds from the sale of this book to cancer charities. There is one here in town that donated $100 when I was sick, and I'd like to be able to give back to them, so that they may continue to help people in need. I'd also like to make some donations to Barnes-Jewish Hospital, so they can continue to give their patients the special care they deserve (such as wonderful gifts at Christmas time). And I'm sure there are other places I will eventually find to give donations to that will make sure cancer patients will continue to get the care that they need.

Now, my work is done. All that's left to do is create a cover for this book, and get the files uploaded to Create Space and to Smashwords, and get it ready to be printed. I intend to put a butterfly on the cover, representing how the butterfly effect brought about such an incredible change in my life, and I hope to find a purple one, as my friend Denise says the purple butterfly holds a special place in her family's heart.

What I've Learned Since

Now I'm going to add another chapter to this and tell you some of the things I've learned since my original printing. First of all, I'd like to make note that in my social media networking, I've met a great many other authors and learned a great deal from them. Rather than being "the enemy" (as you might think of one who could be viewed as a competitor), most of these other authors have been very helpful and generous. Many of them help to spread the word of my name and books across their social media, or have done a review for a review trade with me. I've also done several interview exchanges, where I'll interview an author about his/her latest book and post it on my blog, sharing to all my social media. Then, they'll do the same for me, posting my interview to all their followers. It generates interest in both author's blogs, and helps readers discover new authors.

Several of these authors have been a really big help to me, one of whom is on a writer's group called Scribophile. This is a place for authors to critique others' writings, and by doing so you earn 'karma' points. When you have collected 5 or more karma points, then you can post your own writing for a critique. I've gotten really important feedback by doing this in this way. And I've found that it's easier to take the editing one segment or chapter at a time, than try to think about editing the entire manuscript at one time. Someone on Scribophile gave me a one year's membership (a $70 value), but chose to remain anonymous, and this allows me to use even more of the great features on the site. I'm very grateful to this kind person!

I'd also like to thank author Vinny O'Hare. He runs a site called Awesome Gang, a promotional site for independent authors to have an interview posted, list their books, and even inexpensive feature ads. I met him through Awesome Gang's Facebook page. He's also written a book called 25 Ways to Improve Your Website, which I managed to catch on a day he was offering it for free. It gave me a lot of insight, as I was just starting to set up Metamorph Publishing's website on WordPress, and I got a lot of very useful information. It's an excellent book for people like me who have very little knowledge of how the internet works and what is and is not good to have on a website.

Vinny also posted a link to Black Friday deals, where I ended up getting 102 free stock photos from www.creativemarket.com, photos that I'm free to use as book cover images, advertising, web images, and many more. This is the first time in my life, I think, that I ever shopped on Black Friday (though I didn't need to leave the house to do it.)! He also linked to a special deal on a writing software called Scrivener, which was being offered for half price on Black Friday. I'd never heard of it, though I wish I'd had the money to actually purchase it. I downloaded the one month free trial and started to learn how to use it.

This is a word processor, but it's more complicated than Microsoft Word. In fact, it comes with a nearly two hour tutorial on how to use it. Still, I was having difficulty understanding some of the functions of the software, so I was having a discussion with several other authors on Awesome Gang's Facebook page. These were people who were very familiar with Scrivener and could give me real-time answers to some of my issues with the software.

One of these people was Karen Prince, author of Scrivener Essentials for Windows. (She also has a different one for Mac users.) She graciously gifted me a PDF copy of this book, which I downloaded onto the Adobe reader app on my phone. Her book uses a LOT of screenshots to describe the function she is talking about. Essentially, she had her computer take a photo of exactly what was showing on her screen. Then she could discuss the function of the software while the reader could see what their screen should look like. This simplicity got me over several frustrating hurdles that I might not have resolved without her book.

The magic of Scrivener is the fact that it organizes a large document, such as a book manuscript, into different folders. For example, I have a folder for each chapter of this book, with a text sheet inside for the text I'm actually writing. In this way, I'm only working on a small chunk of manuscript at a time. This also allows for a split screen, where I could be reading the original chapter called What I've Learned Since, and editing it in the split screen. So far, I've not really used it this way, but the option is there. And Scrivener compiles all these folders into a finished product, whether it be for a Word document, already prepared .mobi file for Kindle, or .ePub file for Nook and iBooks.

The software also allows for storing documents within your manuscript such as character and place descriptions. This, of course, won't appear in the final work, but it helps an author with memory problems (such as me) to remember, or look up quickly, details about the characters. I can also keep other notes right in the document (a foreign word I'm using, for example) where I have easy access to it when I say, "What was that called again?"

I've simplified these features for my examples here, but the more I use the software, the more helpful it becomes. I intend to continue using it for all of my new works, and I can even help the kids with school projects and so on. It's extremely versatile software and will make the publishing end of my work so much easier. I'll no longer have to worry about my chapter headings not falling into the correct place, or page numbers on the wrong side of the page. This will compile files for print, for Kindle, for Nook, and for a lot of other applications as well. I've already taken a work in progress and compiled it for both Kindle and Nook, and placed it on the e-reader on my phone. The result is a more professional output than I was ever able to achieve before.
Coming Soon!

Turn the page for a sneak peek at Souls of the Reaper, book two in the Undead Unit Series!!
He gazed past the reflection of himself in the dark, full-length window, watching the city lights below flickering through the drops of rain rolling down the smooth glass. Though it was winter, the temperature rarely dropped to freezing, and when it did, it never stayed there for long. As a result, most of their precipitation fell as rain instead of snow, except for the occasional ice storm that passed through every decade or so and left behind a city glittering under its crystals. Classical symphony music played softly as he bobbed his head in time with the beat.

A quiet, feminine moan drew his attention from the window, and he turned to look at the woman on the bed. Her wrists were tied securely to the bedposts, and her head rolled restlessly on the soft pillow, perhaps reacting to some dream or hallucination brought on by the drug he had slipped into the wine earlier. After a moment, she stilled again, her voluptuous body relaxing under the thin sheet. He clasped his hands together in anticipation. This was going to be fun.

He went to the small table next to the bed and reached into the antique black bag. It had belonged to a doctor over two hundred years ago, and was an affectation that amused him. The case also allowed him to carry his supplies, keeping them in easy reach, and so it served a practical purpose as well. He was, after all, a practical sort of man. He withdrew a syringe and a vial of clear liquid. He drew an old watch from his pocket, glanced at its white face, and smiled. She was almost ready. He tucked the watch back into his pocket, causing the thin gold chain hanging from a belt loop to dance and catch the muted light.

The drug he had given the woman had easily rendered her unconscious, and he had carried her to the bedroom to make his preparations. But what he needed was to catch her at that brief moment just before she returned to awareness. Then he would give her the Valium that would erase her short-term memory of him, and do what he was there to do. When the woman woke, she might have a massive headache, but she would have no idea of what had transpired.

He measured the exact amount of sedative for her body weight. It had taken him a long time to perfect his routine, to determine the correct dosage of each drug so that he could do what he did as efficiently and quietly as possible. He had carefully tested this technique on various homeless people in the heart of the city, and, over time, as medical science had improved, so had the efficacy of the drugs. He was ready. Nothing would stop him from carrying out his plan. He turned to his victim and expertly inserted the needle into a vein on her outstretched arm.

About the Author

Markie Madden was born August 19, 1975, in Midland, Texas. She grew up in the small town of Flushing, Michigan. While in high school, she took creative writing and was a photographer for the school newspaper. In 1993, she won the National Quill and Scroll Society award for best photo in a high school paper. She began writing her first novel, Once Upon a Western Way, while still attending school.

Markie is now married with two teenage daughters, two rescue dogs, and her horse, Athena, who is featured on the cover of her horse care guide, Keeping a Backyard Horse. She tried many times over the years to publish her novel, first on her own, and then hiring a literary agent, all without success. In early 2012, after getting her first smart phone and e-reader application, Nook, she discovered the world of self-publishing through a website called Smashwords. She finally published Once Upon a Western Way through this distributor in April, 2012.

By December of 2014, Markie was the successful publisher of three books, her first published work, Once Upon a Western Way, now available in print as well as e-format, as well as a self-help guide to horse care, Keeping a Backyard Horse, available in print and e-format, and her cancer memoir, My Butterfly Cancer, available in print, e-format, and audio-book.

In 2015, Markie enrolled in the world-wide National Novel Writing Month, a challenge to writers everywhere to write a 50,000 word novel in just 30 days, in the month of November. On November 25, 2015, she crossed the threshold, exceeding her word count goal of 50,000 words. She is a winner of National Novel Writing Month. Her winning NaNoWriMo novel, Souls of the Reaper, was released in March of 2016.

Currently, Markie lives in the small town of Fisk, Missouri, with her family, her dogs, and her horse. She is still writing and is working on her crime/paranormal series called The Undead Unit Series. Book one of the series, Fang and Claw, and book two, Souls of the Reaper, are now available. Book number three, Blood Lust, is due to release in the fall of 2016. Book four, Siren Song, was her Nano 2016 novel and was released in April of 2017. She is also working on something entirely new for her, a historical series called the Pharaoh Queens Series, set in ancient Egypt. The first book is The Pharaoh's Destiny, is due for release in July of 2017. She is also developing a political thriller called Toxic Seed.

Markie has founded Metamorph Publishing, in order to publish her own books, and she is now working with several other independent authors as well. Metamorph Publishing has released the first of an anthology series by a collaboration of women authors called Gems of Strength (Gems of Sisterhood 1). This first book in the themed Gems of Sisterhood tells the story of strong female protagonists demonstrating the strength of womankind. The second book of the series, Gems of Gratitude, was released in November, 2016, and the third book, Gems of Freedom, will be available July, 2017. You can find her at her website: https://metamorphpublishing.com. 
Places online where you can find Markie Madden or her publishing company, Metamorph Publishing.

Official Website: https://metamorphpublishing.com

Official Facebook Page: https://www.facebook.com/markiemaddenauthor/

The Undead Unit Series Home Page: https://metamorphpublishing.com/the-undead-unit-series/

The Undead Unit Series Facebook Page: https://www.facebook.com/undeadunitseries/

Square Store: https://squareup.com/market/metamorph-publishing

EBay: http://www.ebay.com/usr/maddemargu

Official Facebook Page: http://www.facebook.com/booksbymarkie

A-List Street Team: https://www.facebook.com/groups/MPalist/

Smashwords: http://www.smashwords.com/profile/view/Naddya819

Twitter @metamorphpub

GoodReads: https://www.goodreads.com/httpsgoodreadscommarkie_madden

Google+ personal: https://plus.google.com/+MarkieMaddenMetamorphPublishing

Pinterest: http://www.pinterest.com/naddya81975

YouTube Channel: https://www.youtube.com/channel/UCaDYw5Ocjq3zynC7LTOwXUw

OR: https://www.youtube.com/c/MarkieMaddenMetamorphPublishing

Instagram: http://instagram.com/naddya81975/

Authorgraph: https://www.authorgraph.com/authors/naddya81975

Books by Markie Madden

My Butterfly Cancer+

Once Upon a Western Way+

Keeping a Backyard Horse+

Fang and Claw(Undead Unit Series 1)*+

Souls of the Reaper (Undead Unit Series 2)*

Blood Lust (Undead Unit Series 3)*

Gems of Strength (Gems of Sisterhood 1), an anthology

Clash of Times: The Quest (Clash of Times Saga)*

Siren Song (Undead Unit 4)

The Pharaoh's Destiny (Pharaoh Queens 1)\--Coming in July 2017!

*Indicates young adult version is also available.

+Indicates audio book version is also available.

For other retailers, please visit Metamorph Publishing.

Also by this Publisher

Find Metamorph Publishing on Facebook: https://www.facebook.com/booksbymarkie

Witchopedia: An A to Z Book of Shadows by Naddya Foxfire

Rubies from the Heart: Dark Poetry by Cynthia Ruby

Unrelenting Hell (Apocalyptic Book 1) by Alana Madden

Gems of Strength (Gems of Sisterhood 1), an anthology by The Sisterhood

Gems of Gratitude (Gems of Sisterhood 2), an anthology by The Sisterhood

Tommy Puck and the Prince of the Elves by Chip Skelton

Allen Cain: Truth, Justice, Magic by Roger Whitmire
