My Story - Teetering

Picture of Twin Falls, ID

Joe 3:14 Multitudes, multitudes in the valley of decision: for the day of the LORD is near in the valley of decision.


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My Story


The full moon illuminates the cottontail of a rabbit as it zigzags through the tall grass. A coyote is in chase. He is running as straight as an arrow, slowly gaining on his prey. The rabbit is only feet away from its hole, its den, safety. Suddenly another coyote appears, blocking the path to safety. The rabbit is mid stride in the air, between leaps. It has a split second before it lands and must leap again. In that split second, it must decide to continue towards the safety of its den or turn towards a pile of logs nearly 75 feet away. Neither choice is an easy one. Neither choice will ensure life. There is the rabbit in mid air, teetering on the brink of the abyss. What to do?

A stem cell transplant? I don't think so. From what I hear that is like going to hell and back. This was my reaction to the news that I needed a stem cell transplant. I had been in treatment (chemotherapy) for about a year at this point. I finished the first 6 cycles (twelve treatments) of chemo and was told to go home and enjoy life. That's it? I was skeptical but amazed and happy. Two weeks later I noticed the lymph nodes in my neck were getting larger. The third week came and the lymph nodes in my neck were easily visible to anyone who looked. I called the oncologist and was hooked up to more chemo within hours. I took 3 more cycles, and was told I was at my lifetime maximum dosage for one of the chemotherapy drugs I had been taking. There was nothing that my oncologist could do for me at this point that he felt would do any good. He recommended a stem cell transplant in Little Rock. What happens if I don't get the transplant? I asked. You get sicker. He replied. How much sicker? You will die. Ok, how long do I have? This is like pulling teeth, I thought to myself. He said I had something less than a year. He gave me the information on who to contact to start the process of getting the transplant. He had already talked to them and they were expecting my call. Well that's it then, I thought. I went home promptly discarding the information he had given me. I had read about stem cell transplants. I had seen patients who were going through it. I had talked to people who had gone through it. I wanted no part of it. On the way home, I called a customer who had turned out to be a friend. I knew she had worked in hospice. She had told me once before, that if I was ever told that I had x amount of time left, to come see her. We made plans to meet a day or two later. We had lunch and discussed my situation. She was one of the few rational people that I talked to during this time. She was just matter of fact and had good information. I recommend anyone who gets this kind of news talk to someone in hospice. This conversation was invaluable to my wife and me.

I started preparing myself and trying to prepare my wife for the inevitable. I remember thinking that this is apparently God's will and I just needed to trust him. I had a healthy respect for death but not an irrational fear of it. This would most likely be much harder on the people around me than it would be on me. I have to admit, I was saddened by the thought of not accomplishing the things that I wanted to do. Things that I had fully expected to do in the near future, and in the long term. I wanted to build a house. I had cut down several trees in order to clear a space for this house more than a year earlier. I looked out the window at those trees, which still lay where I fell them. Partially de-limbed, as if I had simply stopped for the day. I had stopped that day and never went back to finish the job. I remembered how tired I was when I cut those trees down. That was the point at which I had realized that something was seriously wrong. For the first time in my life I had found myself in a situation where my body and mind were failing me. My body was simply not strong enough to do the job, and my mind was too tired to make it. I actually felt much better at this point than I had back then. That didn't matter now because that house would not be built.

I couldn't dwell on these selfish thoughts; there were things to do. I knew that my wife would be unable to manage our place on her own. I attempted to convince her to sell our place and buy something in town. She wasn't having any part of it. We had some time yet, I thought. When I got sicker and was unable to do things around the place, then she would see that it just made sense to move. A thought then crept into my head. She would remarry. The new husband would take care of the things that she couldn't, just as I had done. A flash of jealousy, a little anger. The thought of that bastard using my tools, taking care of my wife, well.... Then reality. Till death do us part. That was the vow. This was death. With my death so died the vow. I would die, so she would probably remarry. She was still young. I wanted her to be happy, didn't I? I did, I truly did. This is a lonely world when one attempts it without a partner. I would never ask or expect her to do that. Snap out of it, I thought. Then as quickly as the thought had appeared it was gone. It was replaced by an even more concerning thought. What would happen in the afterlife? She would want to be with her new husband. After all I would be a distant memory, he would be fresh in her mind. Maybe this process was going to be harder than I thought. It is a good thing for me that the bible addresses every issue one might have. It has a way of solving problems and clearing irrational fears or thoughts from one's mind.

The next week I was walking through the lumberyard buying materials for a job. I was in the cedar isle picking out some lumber, when I noticed the cedar 1 x 10 x 12's had a price on them of less than $3. This was something more than 90% off I thought. That couldn't be right. I finished getting the materials I needed for my customer and headed for the check out. The thought of those cedar boards kept coming back to me. I didn't need them. What would I use them for? Maybe, if I was going to be around for a while, I would buy them and someday a project would come along for them. But I wasn't going to be around much longer. What would I use them for? A coffin? Yes, that's it, my coffin. I didn't want some fancy, shiny coffin. What could be more therapeutic than building my own coffin? I could decide where this body would spend eternity. This was a project that I could do in my shop. Later when I was weaker and unable to work for customers, I could do this at home, in my shop. It would give me something to do. I decided I would get one board and ask the cashier how much it really was when I checked out. If this really was the price, I would buy them and build a coffin. If not, so be it. The clerk explained that they were no longer going to carry this size board and the price was correct. I bought the boards. That evening I took the boards and put them in the overhead storage in my shop. I placed them directly beneath the hoist. Later on when I was ready to start building I may be much weaker. This way, if I was too weak to carry them down, I could hoist them down. It may sound weird, but the thought of building my own coffin was very liberating for me. It was a way of preparing for the transition from this life. I have often thought that we need things, ceremonies or events in our lives to help us make transitions. For instance, at what point does a boy become a man, or a girl become a woman? Puberty? I don't think so. Many cultures throughout history have had some sort of coming of age ceremony. Why don't we? Building my coffin would be my transition event.

My wife and I discussed many things over the coming weeks. There were things that she needed from me. Where did I keep this or that? What should she do if this or that happened? In the past, when she had a flat, she called me. Maybe she needed to learn how to change a flat or maybe it was time to get AAA. The power goes out allot in the winter. How should she hook up the generator? I wired the generator into the house wiring and typed out written instructions complete with photographs on how to use it. She needed to know all of the details of normal life that I normally took care of. It felt as though I were going on an extended trip. I would have no cell service on this trip though. Whatever I needed to tell her, I had to tell her before I left. I didn't have a will. There were things that she wouldn't want after I was gone. Not many, but a few. She wouldn't want all of my tools. I started making a will and then the thought came to me of her new husband. That jerk would probably want this stuff. I didn't really care about him, but he would be using it to take care of her. I didn't discuss this with her but decided the only thing I would put in my will were some of my guns. Everything else would stay put. We discussed who would be interested in buying certain things if she should want to sell them later. This person has been trying to buy this for a year. That person offered this much for that. Watch out for this person. That person will help you do this or that if you ask. This person has offered to do anything we need. Etc...

Well-intentioned people had bombarded me for about a year at this point. There had been an attempt to convert me to almost every religion under the sun. I had a stack of books that I would never be able to, or even care to read. I had been given multitudes of website addresses for treatment centers and sites which claimed to have a cure for cancer. I had been trying some remedies that had been recommended to me and they were not working. In fact, they were making things worse. We no longer answered our phone before seeing who was calling. There was no longer a normal conversation on the phone. Every conversation was really an interrogation about what symptoms or treatment I was having, or what were the results of this test or that scan. Every conversation started the same way. They would ask how I was feeling. I would respond I'm feeling good. How are you feeling? There was often an irritated pause before the interrogation got under way. I could make as many attempts as I liked to change the conversation, but it would always come back to my health. Many times an attempt to change the conversation would simply be ignored. Many times we let the phone ring because we new it was more advice on what drug to take, or what remedy worked for a friend of a friend of a friend, or the number of someone to call. I talked to 2 survivors during this period. One was a stranger who had an irrational fear of death. He would have done anything under the sun, no matter the consequences or the odds in an attempt to stay alive. The other was my aunt. She was calm. She and I had very similar outlooks on cancer. It was refreshing to find one little nugget of sanity in what had become a world in need of white padded walls. Most importantly, part of our conversation was just a normal conversation that she and I might have had at any given time. I can honestly say that this was the only rational conversation I had on the phone in over a year. I learned to hate the phone.

I stopped in to pay a bill at the oncologist one day. How is your treatment going? He asked. There was silence as I tried to gather the words that I would use to tell him that I was not going through with the treatment. I knew he would be disappointed. When I had left his office that last day he and particularly the nurses had really encouraged, or in some cases insisted that I go forward with the transplant. I haven't called them. I said. He told me that he knew because he had called to see why they were not forwarding information to him. He then told me that he had made an appointment for me and told me what time and where I needed to be. I started to protest. He said. Just go talk to them. It doesn't hurt to see what they have to say. They may have options other than a transplant. If they can't help you, they will tell you. What ever they recommend, you can decide if it is right for you. Just get all of the information before you make your decision. I reluctantly agreed to go to the appointment.

It is a 3 and a half hour trip from here to Little Rock. The hospital in Little Rock was huge. The appointment lasted all day. We saw the doctor for only about 10 minutes. There were assistants, nurses and social workers and insurance people and the list goes on and on. At the end of that appointment all we really new was that she agreed that I had less than a year to live. That appointment led to a battery of tests. They were unable to give me any information until these tests were complete. Then there was the appointment to get the results of the tests. At the end of that appointment I knew I didn't like this oncologist. She appeared extremely arrogant to me. She referred me to another specialist and said the odds of a stem cell transplant working for me was about 15%. 15% was going to make my decision very easy. No transplant. No way. There were more tests before I was allowed to meet with the new specialist. He couldn't tell me anything until the tests were completed. Then finally we met with him. The first thing he did was to give us a tape recorder to record this appointment. It lasted for more than an hour, just talking and discussing my case and the options. He recommended a stem cell transplant. Big surprise. He told me that he disagreed with the other oncologist and that it had a 50/50 chance of working. He said my life expectancy without it was a few to several months.

This was consistent with what the other oncologists had said as it had been several months since I had first been told "less than a year". The most important thing that I got from this doctor was that there was hope without many of the side effects that I had been led to expect. Still I was getting the feeling he wasn't being entirely honest about how bad it would get. He put an end to those concerns when he said "or you might die during the transplant". It sounded almost funny when he said it because of his East Indian accent. I might die during the transplant? I asked. Yes, he said. You could get an infection and die because you will have no immune system. I felt like he was being honest with me at this point. He had done a good job of explaining how my case was different from the people I had seen in wheelchairs who appeared to be worse than dead. My wife also reminded me that the chemo had not affected me like it did most people. I had yet to lose my hair even after a year of chemotherapy. In the beginning I had gone directly from my chemotherapy treatment to work. It had only been in the previous three months that I had quit my full time job and started a small handyman business, where I could limit my hours if needed. It did get tougher with each treatment. The doctors were also telling me I would not be able to work at all if I went through with the transplant. I had more test and another appointment with this oncologist. Then came the day when it was time for me to make a decision. It had a 50/50 chance of working. It all came down to the same odds as a coin toss. My wife was looking at me through tearfully hopeful eyes, asking will you do it? This was my cottontail rabbit in mid stride moment. What to do?

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