CHEMO POISONING

GOING HOME. THE JOURNALING GETS EVEN BETTER.

When that hospital stay was over, I went home. I felt as if I had leaped over one hurdle and was taking on another, in spite of my conviction in the hospital that I was going to choose life, I was afraid of everything: light, dark, being awake, being asleep, healing, and not healing. My days and nights at home were a nightmare of anxiety attacks. That was a new experience for me. I felt paralyzed from the stress. I had no coping skills.

I WAS BLIND TO MY FAMILY’S LOVE AND SUPPORT

I had literally shutdown my complete emotional system. I sat in the same chair fourteen hours a day, watched TV, slept and shut out my family and friends. I was seriously depressed. My mind, body and spirit were crippled. I was not able to explain to my wife and family that I thought they didn’t understand what was wrong with me. They offered advice and suggestions that I couldn’t accept. After weeks of this, my wife and mother thought I should go back to work. This was the last thing I wanted to do. I was too paranoid to face the public.

I had too many unstable emotions. I thought no one was present for me to understand my condition. I thought no one was there to talk with me, no one to share my tragedy with, no one to walk through this fragile time with me. Although that was my reality, my family had been by my side every minute of every day. I was oblivious to all the love, support and prayers that surrounded me during my lowest point of my life. I was lost somewhere in my hidden thoughts.

I owned a popular restaurant. I did not have the strength to face the public and talk to anyone. People do not know what to say to a cancer survivor anyway. Most people think you are going to die. Still others treat you like a leper, an outcast of society. Then still some offer sympathy. That’s the last thing a survivor needs, empathy maybe, but not sympathy.

I WAS IN A BAD SITUATION GETTING WORSE.

As the days turned into weeks, I began to consider the post surgery treatment, chemotherapy. I was uncertain about it. I met with a local oncologist and he explained the statistical options to me. He explained that my surgery had a success rate of 80 to 85 percent. He then explained that the chemotherapy would add a 5 to 8 percent chance of success (to be cancer free).

I was undecided about the procedure five weeks after my surgery. I had up to six months to start standard chemo. Twenty-eight days after surgery, I was told about a clinical study from the Allegheny Cancer Center in Pittsburgh, Pa. The study involved a new drug called Oxaliplatin that was being used in Australia and Great Britain with some success. The clinical study was for stage two colon cancer survivors. This particular study would only involve 2472 survivors throughout the US.

The issue was that the treatment had to be started within 45 days after surgery. That gave me 6 days to make up my mind about taking chemotherapy, being accepted into the clinical study and the follow-up treatment. This was a good chance for me to help future survivors with their fight. This is when I decided I would help future generations of survivors. The nurse told me the Oxaliplatin could add an additional 5% to 8% chance of success (being cancer free for life). There were also side effects but I was told the chance was very small for these. Huh.

THE SIDE EFFECTS

The side effects included vision loss, memory loss, and the numbness of the extremities, vomiting, diarrhea and inability to touch cold items and in rare cases internal burning of the digestive system. After reading all the paperwork and thinking strongly about the positive side of the treatment plan, I decided to go ahead with the trial. Chemotherapy captured me with a stronger grip of worry, fear and anxiety than did my surgery.

The body and mind are such great creations of God. I look back and cannot understand how I survived this ordeal. My throat still fills with the taste of the chemotherapy drugs every time I think of my treatments. Journaling this was no easier. I became ill every time I penned a line. So here we go. Every Monday at 8:00 AM for six months, I would receive my 5 FU and Leucovorin. These were the two standard drugs issued for chemotherapy treatment of colon cancer. Every other week I was to receive the Oxaliplatin, the clinical trial chemotherapy drug.

The weekly treatments were four hours long, but the treatments that included Oxaliplatin were eight hours. Every visit I would go to the lab, have blood drawn and analyzed. If the blood levels were too low, I could not receive treatment that day. I became a Monday regular at the lab. I would then go to the Oncologist’s office for them to review my lab results and weigh in. Then I would proceed to a chair that looked like a dentist chair.

THE CHEMO WAS “MIXED TO ORDER.”

My nurse, my friends wife, would start an IV and give me some Ativan to help me relax. She “mixed the chemo to order” according to my height/weight/blood level ratio. Then she put the chemo in an IV bag and administered it. My first Monday chemo treatment burnt the veins in my right arm severely. My doctor told me about a medi-port that could be surgically inserted under my skin in my upper chest. This would enable the chemotherapy drugs to be administered through the medi-port directly into a large vein in my chest.

The port would accept the chemo needle through my skin and a small tube transported the chemo to my vein. This was really my only option if I wanted to continue with chemotherapy. I had to have surgery that Friday to install the port. I was not ready for another surgery or hospital stay, however so light but back to the hospital I went. My chemo was changed to Wednesdays. The following Wednesday was my next treatment. When I went to the lab, I told the lab technician that I had a medi-port surgically put in my chest the prior Friday. This area was very sore and tender from the cut and the stitches.

In the lab, a 2” needle is pushed through the skin and into the medi-port. Tubing extends from the needle, which is used to administer the chemo and draw blood for the lab. When the nurse pushed the needle through my skin, she could not find the medi-port opening. She rotated the needle searching for the opening in the medi-port. The needle was being pushed right into the center of my prior surgery. I was overwhelmed with pain and anxiety.

I went through this pain and anxiety for weeks before I found out (own my own) about a skin numbing cream used for giving shots to babies. The next couple of weeks of chemo went as well as could be expected. But then I started getting very sick. I had my treatments on Wednesday; and on Sunday night like clockwork I would become very sick. My stomach and colon would become very spastic. The pain was indescribable; the anxiety fear and worry were worse.

THE PAIN WAS INDESCRIBABLE; THE ANXIETY, FEAR AND WORRY WERE WORSE.

I would have convulsive diarrhea for hours without stopping. We called the doctor after the first Sunday night occurrence. My wife was told to observe me until I settled down. At my next chemo session the drugs were reduced to help stop the negative reactions I was having. The next week of treatment was my first session with all three drugs. Although I never vomited from my treatments, I always felt the presence of foreign matter in my body. I felt somewhat violated most of the time.

That Sunday night, like clockwork, my colon would become spastic. I would experience violent diarrhea for at least two hours. The pain was horrifying. My greatest fear was dehydration and tearing my incision. A tear in my incision would result in emergency surgery and the possibility of being poisoned from exposure to colon bile. The next week the same thing happened. The chemotherapy was on Wednesday and a spastic colon attack on Sunday night. The following week the same thing happened. I had experienced over two hours of a constant spastic colon and diarrhea.

My incision from the colon surgery was hurting very badly during this session. I was experiencing pain, agony and helpless fear. My wife was also concerned that I might become dehydrated again so she rushed me to the hospital. I was hooked up to an IV to restore my fluids. After two more hours of pain, soreness and diarrhea with my spastic colon, I saw an ER doctor. All he did was a rectal exam to check for hemorrhoids and sent me home. That was very encouraging. This gave me due cause to start questioning my healthcare plan.

My chemo medication was adjusted a second time. I was feeling unsure of my treatment decision. We agreed to stop the treatment for one week to give my body a rest. I made the decision to follow through with the chemotherapy and the clinical trial. The following Wednesday, treatment was scheduled. Little did I know what the next few weeks would hold in store for me.

I had my treatment on Wednesday again and Sunday, the night that fear reared her ugly head. But this time was different. I experienced violent, continuous diarrhea (20 to 25 times). This time I was vomiting uncontrollably at the same time. I was fearful for my incision and my overall well being.

LIFE WAS AN EMERGENCY

We called my sister at 1:30 AM to watch our children while my wife drove me once again to the hospital ER. This time life was an emergency. We had to pull all of the seats out of our minivan so I could sit on a trashcan while holding another one to vomit into. As soon as we arrived at the hospital, I was hooked up to all the familiar monitors and IV’s ran into my medi-port. A battery of tests was run. I now had a fever of 104.3 and my stomach was swelled twice its normal size. My stomach was too sensitive to touch.

My throat and mouth were red, swollen and infected. I was still passing blood through my rectum. It didn’t take long for the doctors to diagnose me with “chemo poisoning.” My entire digestive system; my lips, throat, stomach, small and large intestines to my rectum had experienced 2nd degree burns. These types of internal burns were similar to burns received in a nuclear explosion. The body burns from the inside. My body’s systems were wounded again. Just when I thought things were going to get better, my days darkened.

These would be the darkest days of my life. I was admitted to the hospital immediately. The doctor informed us the only treatment for chemotherapy poisoning was to administer three drugs to me through my IV. This was the only treatment known for chemo poisoning. For the first time in my life, there was no quick fix to a problem. The pain I was experiencing was horrifying. My vocabulary is not extensive enough to describe it. I could feel my life energy slipping away each day that I did not heal.

Once again, I was injected with tubes. I had IV’s for the three medications, another for my pain medication, an oxygen tube, a catheter and a suction tube that ran into my nose continuing down my throat into my stomach. This was used to drain my stomach of the infection. I also wore inflatable leg massagers to keep my blood from clotting.

AS THE DAYS WENT ON MY CONDITION GOT WORSE.

The doctors were worried that I might become septic. My stomach was very swollen with infection. At one point, the doctors considered surgery on my colon again to relieve some of the swelling. The doctor thought my colon might rupture from the recent surgery and trauma.

I was kept as comfortable as possible with pain management, but it was never enough. The pain was unbearable and indescribable to this day. My temperature hovered at 104.3 degrees for the first five days. My wife explained to me that I was not improving. Deep in my inner being, I was struggling to hold onto solid ground. I felt as if I was drowning (like a nightmare). Other fears of pneumonia settling in my lungs became a reality. I remember being sent to get a chest x-ray one day.

I was so weak and disoriented that I fell out of the wheelchair in radiology. I was fighting for my life. I felt my inner being weakening. My strong sense of life was slipping away. I remember at my lowest point, deep in my inner conscience, sensing my life force, my spirit, coming face to face with my inner man. Oh, what a helpless state I was in. I was too close to my eternity.

My will to live was being tested. On the sixth day in the hospital, I was told I was very close to my body becoming septic. I was horrified. I was so medicated and confused. I had trouble digesting my environment. The body becomes septic when infection takes over the body’s immune system. The infection wins the war, not the patient.

THE MEANING OF THE FLOWER AND TWO BIRDS©

My wife and family where overly concerned and I figured that out when the priest came to visit me the fifth day I was hospitalized. At that moment, I realized my fever had to break or I may be returning to dust quicker than expected. That night I had a dream, an epiphany or an overmedicated visualization of walking the narrow path in life.

In my dream, I found myself standing on a small plateau. I was at a crossroads in my path. To my left and down a steep hill, was a beautiful, lush oasis of sorts. I could see beautiful trees, flowers and wildlife everywhere, many lakes and streams, all just an easy walk down the hill to paradise.

I noticed that the path only went down the hill. It was very steep and there was no easy way to return. I sensed my body being tugged to take one final step in that direction and I would be pulled by inertia down the easy path of life to what appeared to be my Eden. Then a split second later, I looked to my right. I saw a path meandering into a forest that stood in front of me and gradually went up to the base of a mountain. The forest of pines was perhaps twenty miles to the base of the mountain. I could only see that path in front of me for about 100 feet.

This path was an uphill climb the entire journey. I could not see anything but trees for twenty miles and then a mountain to climb to reach my destination.

EVERYTHING WAS HAPPENING SO FAST

Everything was happening so fast in my mind. I looked at the beautiful valley to my left and felt the ambience of it pulling me towards the crest of the plateau to start my descent. I sensed that the path to my left was the easy way in life.(death) Then I peered to my right looking at the height of the mountain some twenty miles away and the path through the forest I would walk with great uncertainty and unknown challenges. (life)

“I knew right then I was about to choose between life and death”. My fever was raging on and I could be septic in the morning. I looked to the left and felt as though I was being pulled to that choice. I closed my eyes and opened them with the forest and mountain in front of me. My mind was racing so fast. As I looked at the mountain again, I saw no oasis, I saw no Eden, I did see a twenty mile green pine forest that lead to the base of an enormous mountain.

I looked to my left again and heard a voice encouraging me to take my first step down that path. As I lifted my left foot to proceed, I looked to the mountain one last time searching for an answer. At that moment, a shooting star flew over my head and slowly meandered its way back and forth just above the tops of the pine trees.

The shooting star moved slowly back and forth over the tree tops moving directly towards the mountain. As the star reached the base of the mountain, it proceeded up the face of the mountain leaving a marked path for me to follow. When the star reached the top of the mountain, it shone brightly for a second and then disappeared.

I chose the path to the mountain, the path to life. Was my dream real? Did I make a choice to walk the narrow path of life instead of the wide path to death? I believe with all my heart I was at the crossroads of choosing life or death for myself. I chose to fight the hard fight, to walk the narrow path and have faith and hope that the living God of the universe was always watching over me. I know if I had walked the other, the infection would have taken over my body systems, I would not have survived.

Then, in my darkest hours, I began to heal. My temperature began to fall. I was able to rekindle my strong will to live. I keep hearing my father’s voice saying “Never, never lose hope, never, never give up.” After the ninth day in the hospital, I finally got a grip on my condition. The leg massagers, catheter, oxygen tube and nasal tube to my stomach were removed.

PRAISE THE LORD JESUS I WAS HEALING

So what does all this have to do with a flower and two birds? As I was healing, my nurse assistant helped me walk around the hospital to slowly build my strength again. She also encouraged me to do something I enjoyed while I was lying in my bed those long hours.

I started drawing complicated nature scenes but quickly lost my interest. Then I drew a large flower in the center of my page with two birds flying above it. I added some grass and clouds and conceived a picture of a “flower and two birds.” I have drawn this same picture hundreds of times each year when I long for simplicity in life.

Flower and two birds© represent a very important mental struggle we all face many times a day. “Do I do what is right and walk the narrow path or do I follow the broad road that is wide and easy? The broad road looks absolutely beautiful and easy to get to. But after the first step and slide down the hill, it is much harder to return to where you started. It is much easier to gradually walk up a mountain, fall occasionally, get right back up and keep going in life.