My Story - Transplant

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Rom 14:8 For whether we live, we live unto the Lord; and whether we die, we die unto the Lord: whether we live therefore, or die, we are the Lord's.


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My Story


This section of "my story" has more spelling and grammatical errors in it than I would like. I missed these errors at the time of writing this and have since decided to leave it as written and edited at the time. I am leaving it in this condition to illustrate my mental state at that time. I truly did have "chemo brain" and was unable to concentrate on what I was doing. I hope that you will see these errors and understand and appreciate why I left them. This was a very difficult time for me.

The mood was relaxed as we headed home from the evening worship. I let off the accelerator as we began the descent down towards the lake. The highway has a couple of sharp curves on the approach to the bridge. I saw something reflective moving through the woods to the right of the highway. I applied the brakes, the front end of the pickup dipped. My seatbelt locked. The reflection morphed into the eyes of a deer as he entered a small clearing on the side of the highway. My foot pulsed to the rhythm of the antilock brakes, as I pressed ever harder on the brake pedal. Time seemed to slow to a crawl as the young deer leaped into the roadway ahead. His body disappeared below the hood. Only his head was visible above the hood. I stared at his eye. His eye closed as I felt the impact of the grill hitting his body. His body was lifted up and turned as he flew feet first through the air. The pickup finally came to a stop as the deer's body landed in the opposite ditch next to a driveway. An oncoming car whizzed past then I pulled into the driveway and parked next to the deer. My wife and I just sat there for a minute. I had that sinking feeling in my stomach. I hunt deer, and that doesn't bother me, but I hate hitting any animal on the road. I hate suffering of any kind. A good shot will kill a deer almost instantly. Hitting a deer with a car usually means suffering for the animal, this time would be no different.

I got out of the truck and made a call to the Sheriff's office. The deer's labored breath steamed in the cold night air. He attempted to stand, and made it almost to the standing position. His body landed hard as his rear legs failed him. I could hear each breath he took at first, then after a couple of minutes he relaxed and lay calm but alert. I looked into his eyes and did not see fear. He was accepting of what was happening to him. Just as an antelope stops fighting in the jaws of a predator, this deer had stopped fighting. I don't think animals understand death, but there is a point where they stop fighting and just accept what is happening. I could relate to this situation. I had been living within reach of the jaws of death for some time. I had been released from the hospital the day before and was due to return to the hospital in two weeks for a stem cell transplant. The one distinction between the deer and I was that although I was accepting of my situation, I had not stopped fighting.

The effects of the chemotherapy had been building and I felt fairly weak. I caught the flu and spent the next two weeks resting for the most part. I did gather the parts and make repairs to our pickup, replacing the front grill and bumper that was damaged in the accident with the deer. The two weeks passed quickly. I was both dreading it and anxious to return to the hospital when the time came. I knew I was about to endure an unpleasant procedure, but I was ready to get it behind me. I made the trip to the hospital alone and checked in as usual. The doctor felt that I might need to recover longer from the flu before beginning the transplant. I asked him to let me get on with it. He ordered more blood tests and told me everything depended upon the results of those tests. He needed to make sure my body had a handle on the infection it was already fighting. I waited most of the day and they drew blood on a couple of occasions. Finally in the early evening I got word that I was well enough to enter the hospital and start the procedure. I felt like an old hand at hospital stay and knew most of the people I encountered as I went through the check in procedure and made my way to my room. It almost felt as though I was checking into a hotel. They didn't have room in the wing that I had stayed in on my previous stays. I was put in a wing of the hospital that was filled with people with kidney and liver failure. These people were waiting on a different kind of transplant. They were in a much more grave situation than I was in. I was told I would be in that wing until my transplant at which time I would be moved to the wing I had been in on my previous stays. They sent me to get my central line installed. They sent me to a different place than I had been before. I didn't think too much about it. I did notice that there wasn't nearly as many people or as much equipment in use. They explained that they would use an ultrasound to see as they guided the line in a vein in my neck down to near my heart. It sounded like the same procedure I had been through 3 times before except that there were fewer people and less high tech equipment. They numbed a place on my neck and I felt them tugging and such as they cut and inserted the line. Then I was overcome by an odd sensation in the right side of my face and head. My face squinched up uncontrollably and there was something making crunching and zipping sounds inside or behind my ear. These sounds were coming from inside my head. Apparently the line had gone the wrong way when they inserted it into my vein. Instead of going down to my heart, it had gone up behind my ear. I looked through a squinched eye at the person performing the procedure. My malformed expression must have told the tale. He asked if it had gone behind my ear, I replied "yes". He made a couple more unsuccessful attempts on that side then switched to the left side with the same results. I was then sent for x-rays to check to make sure no damage was done before being sent to Interventional Radiology where the line was in place within minutes. Here is a word of advice for anyone having a central line put in. Just go to interventional Radiology to have it done. No matter where they try to send you to have it done, just show up and plead ignorance at interventional radiology. I can honestly say that having the line behind my ear was not painful, but it wasn't pleasant either. I recommend skipping this little encounter with the inner ear if possible.

I arrived back in my room and within minutes two nurses arrived wearing blue protective gowns, protective glasses, masks and gloves. One was carrying a glass jar filled with a chemotherapy drug that I had not taken before. I have to admit that their appearance and the fact that this drug came in a glass jar rather than the normal IV bag made me nervous. I was hooked up within a few minutes and decided maybe this drug was no worse than what I had taken previously. That opinion would be vastly different in a few days. They continued pumping chemotherapy drugs into me both orally and IV for the next few days. I increasingly felt weaker and sicker with the normal nausea etc. I continued making my way down to the smoking area a couple of times a day to feed my addiction. I lost track of time and days as the chemotherapy took my normal thought processes away from me. I seemed to be living in a mental fog. My blood counts were dropping daily as expected. The day of the transplant came and I was moved to the other wing of the hospital where I had been on my previous stays. They put me on oxygen for a few minutes while they gave me the stem cells. The whole procedure was pretty anticlimactic. I felt as though I had reached a milestone. I took a walk and showed off my new stem cells to the world. The world seemed unimpressed but I was happy anyway. I soon realized that one reason the world might not be impressed was that apparently I smelled awful. This was a normal bodily reaction to the preservative that was used to store the stem cells and would be with me for a week. That night I developed a rash on my stomach that persists to this day.

A couple of days later I awoke with a strange taste in my mouth. I made my way to the restroom and started to brush my teeth. The toothpaste tasted horrible. It was bitter. It tasted something like burning plastic smells. I tried to rinse out my mouth with water. The water tasted just like the toothpaste. I spit out as much of the toothpaste as I could. I tried to wipe off my tongue with a paper towel. The towel tasted just like the toothpaste and the water. I looked at my tongue in the mirror. It was a little more red than normal. I touched it with my finger. That same horrible taste overpowered me. I went back to bed in time for breakfast to arrive. I took a tiny sip of milk and pushed the tray aside. The taste was simply unbearable. I opened up my laptop to get on Facebook and play some games. My vision was a little blurry I thought as I played. Lunch and dinner came and I again pushed them both aside. I had no desire to experience that awful taste again. I fell asleep.

I awoke in the middle of the night. My vision was very blurry now. I sat up in bed and my vision went black. I held on and waited for a moment to regain my blurry vision. My legs shook uncontrollably as I made my way to a standing position. I tried to appear normal as I made my way past the nurse's station. My legs shook continually as I made my way to the nearest parking garage and lit up a cigarette. Ugh! What was I thinking? That horrible taste flooded my mouth again. I quickly put out the cigarette and threw it away. My nose had started to bleed by the time I arrived back in my room. I did the Kleenex in the nose thing and lay down on the bed. I opened the laptop to play games and realized my vision was too blurry.

No more computer until my vision cleared up some. I couldn't read my Bible, I couldn't see to use the computer, I couldn't stand the taste of food or even a cigarette, I felt horrible, and my nose would not stop bleeding. This was a new physical low for me, but although I was living in a foggy world, my spirits were not all that low and I prayed from time to time. I don't know if it was morning and night or more or less often as I had lost track of time. They gave me platelets, which finally stopped the nose bleeding. Sometime on the 2nd day that I didn't eat they hooked me up to an IV for fluids but also antibiotics because I had developed a staph infection in my central line. My fever would spike and they would give me medicine to get it back down. I don't think I left the bed for the next couple of days. I remember sweating a lot. I remember one night being wet with sweat and having sharp chest pains, which would wake me up. The pain would subside and I would drift back off to sleep, then the pain would return and wake me again. I didn't know if the chest pains were something to be worried about or not. At the time it seemed like too much of an effort to push the nurse button and ask them. The pain would probably be gone before they arrived anyway, I thought. I made the decision to push the button a couple of times but fell asleep before I actually got it done each time.

I knew that I was falling into a trap with the IV and not getting out of bed and not eating. The nutritionist came to see me. She informed me that I could sustain myself on 3 nutrition drinks per day. I forced myself to swallow 3 nutrition drinks per day from that point on. I didn't want to put anything in my mouth because of the taste, but at some point I came to the realization that it was really nothing but a bad taste and I couldn't let a bad taste effect me like it had been doing. I started forcing myself to stand and walk around my room. My blood counts had dropped to the point where I was nutrapenic and I wasn't allowed to leave my room. Only certain people were allowed in my room and they wore protective clothing to reduce the chance of spreading germs to me. I would also try a small amount of food every day. I would try something different each time to see if anything tasted differently. Nothing did. I continued forcing down the nutritional drinks 3 times a day. It took all of the willpower I had to accomplish this each time. I would just drink the whole container at once without stopping. That was the best method I found. If I stopped drinking in the middle of the container, I usually wasn't able to get the remainder down for an hour or more. It is hard enough to eat when you feel nauseous anyway, but this new horrible taste everything had just made it intolerable.

My blood counts continued to drop daily. Just when I would think the counts could go no lower, they would indeed go lower. When a particular count would drop to 1.0 I thought, well it must be bottomed out. It can't go any lower. The next day that count would be reported in a fraction. The following day that item might just not be on the list anymore. My counts finally bottomed out on March 11. My white blood count was 0.04 and my platelets were 6. 12 out of 22 items tested for no longer registered on the test. Bottoming out was a good thing. It meant I was about to start recovering and would be able to leave the hospital. About the time that my counts bottomed out, I found the one thing that I could tolerate eating. The one thing that tasted somewhat like it was supposed to. Lemon juice. I had fish smothered in lemon juice. That was the first solid food I had in over a week.

I had been admitted to the hospital on the 26th of February in what I considered a fairly weak state but physically sound. I walked out of the hospital on March 17, 2010 shaky, with blurry vision and unable to stand for more than a few minutes at a time. My heart pounded when I walked a short distance as though I had been running for a mile. I had driven myself to and from the hospital each time. This time I probably should not have been driving although I did make it home safely.

When I got home I had new found mental energy. I could tell that blood was flowing easier throughout my body. I still had chemo brain but I had mental energy. I wanted to do stuff, but my body wasn't cooperating. I cleaned out the chicken coop and had to rest a couple of times during the process. It is not a very physical activity, yet my heart was pounding and I was out of breath. I felt like my body had aged 50 years in 3 weeks. I had sharp pains in my chest and couldn't catch my breath. I had to sit down. I literally thought I was going to have a heart attack before I got the chicken coup cleaned up. My wife came and helped me finish and then wanted to go do something else. I couldn't even catch my breath enough to tell her that I just couldn't do it right then. I felt like a failure, like I was letting her down as I headed for the house.

The next several days brought moments of clarity and moments of pure confused chemo brain. One night in particular I was having a lot of trouble concentrating. Random thoughts seemed to be flowing freely through my head and I just couldn't focus. I don't really know what was going on that night. I think it was a mixture of the medications I was on and chemo brain. I think I may have accidentally taken an extra dose of my pills that day. I am not sure. Regardless, I was avoiding people as much as possible because I knew I couldn't carry on a rational conversation for more than a minute or two. This particular night happened to be a Church night. I couldn't concentrate throughout the service and was disappointed in myself because I didn't feel like I was getting anything out of the service. Random thoughts just kept running through my head and I could not focus on the sermon. At the end of each service our pastor always asks one of the congregation to say a prayer. This time was no different and when the moment came I was trying to concentrate but Kermit the frog kept running through my head. I was thinking about little Kermit, and thinking didn't he have a sidekick? Yes, there a mouse or a cow or Robby could you say the prayer? What? Really? Me? He had never asked me before. What kind a joke was God playing on me? Hey I bet God knows who Kermit's sidekick is. It wasn't a cow, it was a....People are staring at me....Oh yes, I'm in church and the pastor just asked me to say a prayer. I can't say a prayer. I can't focus long enough to begin to say a prayer. I might start talking about Porky the pigs underwear....What was I about to do?....Oh yea, Porky pig that was Kermit's sidekick....Right? are staring at me....Oh right the Pastor. I was finally able to speak up and ask if I could pass this time. I didn't know what else to do. He handled it with grace even if I didn't. I slinked out of the church after the service trying to remember somebody's sidekick. The Lone Ranger....Right? Oh, I don't know.

I returned to see the doctor about 2 weeks later. My body and mind were healing. The Doctor told me that the scans showed that I was in remission and for me to go home and enjoy life. I didn't need to come back for 2 months. This news didn't really hit me until I got back home. I decided it was time to quit smoking and put them down for good. The next couple of days I walked around in a kind of shock. I had become accustomed to the idea that I didn't have long to live. I was sick. Now here I was in remission. There was hope again. I could make plans for the future. It seemed like a different lifetime when I hadn't had to see a doctor every few days. Now I didn't have to see one for 2 months. I stood in front of the mirror and looked at the scars on my neck and chest from the central lines and the port and the biopsies and whatever else they had cut on me for. My head was bald, my eyelashes and eyebrows were gone. I had flabby skin under my arms. I was looking at a worn body, but now there was hope. I slipped on a shirt and headed for the door. I had cut down some trees a couple of years earlier and they needed to be de-limbed and the logs skidded down to the log pile.

I worked on the logs daily. A few minutes of work at a time is all that I could manage at first. My body grew stronger each day though and over the next two months I cleared the logs and cut down the brush and planted grass. My wife and I planted grapes and several small fruit trees. We planted what we hoped would be the beginning of a future. It had been a long time since we were able to plan for a possible future.

The two months came and went quickly and soon it was time to return to the doctor. That was today. The news this time wasn't as good. The cancer is back and I start chemotherapy again next week. I write this now wondering if our future is just a dream, a dream that will never come to fulfillment for us. Whatever is to come I am prepared as I have my instruction book for life ...or death.

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