I stopped submitting

 I went fourteen to fifteen months without submitting a story to the contest. The reason? It’s Monday morning and I sit in a chair in a cancer infusion center. There is nothing more life changing than to hear the words, “You have advanced Mucinous Adenocarcinomas. Without starting chemo, you’ll be dead in six months.” I didn’t realize how sick I was. It is scary to be on the downhill slide toward dying. My first reaction? Eating the forbidden diet, starting with chicken fried steak, mashed potatoes, and a biscuit. I will cover this with white gravy. As a lifelong Christian, the second thing was to ask the question. “What exactly do I believe? Scrape away the clichés and what’s left?”

 It all began in January of last year when they were searching for the reason the iron in my body kept dropping in my blood. The doctors ignored me, asking repeatedly about a cough I had for 8 months only. Being fed a ton of iron made no difference, and the numbers kept falling. They set up a series of six-week tests to find the reason. Try dividing that into six months.

 The first thing I get at chemo is a bag of Benadryl. I can feel my body reacting. I look at my wife close by, all three of her blurred together, my love and caregiver. She shares the chemo pod with me. The caregiver needs care, too. She looks tired. She is a CDO. This is a person who has OCD but can’t stand the letters being out of order. The last thing that will happen is to wait for the nurse to bring the schedule for the next two weeks. When she comes with the schedule, she smiles and walks past me to my wife to discuss the schedule. She knows I’m a lost cause of things that need my wife’s skills.

  We began our retirement vacation plans in that January and went to Egypt. The trip was incredible and made people's dreams come true.. It's not right that my body started to deteriorate during the trip. It became difficult when I bloated with what I came to understand as thirty-one lbs of fluid. That included 1.1 liters of fluid resting against my left lung. It baffled me because my shirts wouldn’t button and I didn’t understand why my breath disappeared so quickly. Thinking I ate too richly on the trip, I drastically cut back on my eating all the way home. It never occurred to me that my weakness and stomach pains were from fluid created by the cancer. The strange combination about the fluid was the weight loss equaled the fluid weight I gained, so my weight never changed.

  As I prepare to go to the infusion center today, I sigh at the sagging skin on my arms. The chemo caused the fluid to leave rather quickly. I dropped 30 pounds of muscle mass and my arms and legs lost a bunch of mass. In my mind, I aged twenty years in a matter of weeks. I think that is one reason I am always cold. I’ve also had chills because of a side effect of chemo. My chemo began with me receiving chemo through a pic line in my left elbow. I now have a chemo port in my chest. At chemo today, the nurse said she would insert the needle into the port on three. She cheated and stuck me in two. This isn’t fair. 

 My primary care physician, for reasons he didn’t understand, ordered a Cat Scan that covered the trunk of my body from my chest down to my anal opening. He is looking for a small flow of blood, causing the loss of iron. I received the same report the doctor receives. Sitting alone in front of the computer when I read the report. The radiologist covered everything thoroughly. Reading through the report, each organ’s comment was “not remarkable”, meaning they looked good. I felt frustrated that nothing turned up, showing a reason to be losing iron. I read to the bottom, when I read the words, “cancerous cells noted in the fluid buildup. Is there a place that is beyond shock and stunned? This is the first step in saving my life.

 I had to do blood work this morning to get approved for chemo. This is a weekly ritual that is both necessary and frustrating. Even though my blood counts haven’t changed in 15 months, I get to go to the lab. As I sit in my chair in the lab, Shock covers my face as I realize how crazy American medicine is. The numbers of patients can overwhelm the compassion needed for people like me, who have been told twice I may be dying.

       The second person who helped save my life was a physician’s assistant at a walk-in clinic. Requesting x-rays for what I believed was a broken rib. She refused the x-ray and sent me to the emergency room. The emergency room doctor graduated in the bottom ten percent of his graduating class. So he sent me home. He drained three liters of fluid, which my body replaced. It didn’t sink in till later how sick I was. My neighbor told me during this time I looked like shit. My wife never let me out of her sight. It is beyond comprehension because he sent me home.

  I am on a new chemo that is making a real difference. For the first time in over a year, I can bend over. The cancer is in the omentum, and the new chemo has changed the ball of cancer that allows me to bend over. This is a gift because as time goes by, I can bend over with less and less pain. Hope can be an on again and off again thing. When you’ve been told two times you may die, you reach for all the hope you can find. Sitting in my chair in the infusion center, my hope is important for my wife. It encourages her too. My wife told me she wished she could do anything to help. Talk about the heart breaker. A friendly hug or cuddle always helps.

  The third person who saved my life was the second emergency room doctor. We decided since my two primary doctors were leaving, and it was Thursday night, later I would go home. I had a fever between 102.5 and 103. Again, they filled me with antibiotics, including a two-hour long bag. At last, when they sent me home, I was mentally and physically exhausted. What he did without telling me was to send a referral to an oncologist. When I answered the phone the next morning, I was stunned because the phone call came out of the clear blue. The appointment needed to be done. Meeting the doctor, this was the first time I was told I was dying. “If you don’t start chemotherapy, you’ll be dead in six months.” I feel like I am part of a silent club of people who’ve been told they are dying. How can anyone remain the same after that?

  The nurse comes and hangs the chemo bag. The Benadryl has my mind fuzzy, so I watch but don’t pay attention. I noticed the time because this bag takes an hour. Sixty minutes can take forever to go by. I try to sleep but don’t succeed, so I just burrow into the blanket to stay warm. My wife crocheted the blanket for me. She made it with a heavy yarn that gives the blanket great warming powers. The alarm signaling the chemo pouch is empty goes off. The nurse comes into my cubicle smiling and saying it’s time to go home! I feel like a prisoner about to be set free today.

 One challenge to having a diagnosis like this is telling the family. My son tried to stay positive with me, but the people where he works told me it was hell being around him for two weeks. You must judge what you think people can handle when you tell them stuff. For that reason, I told my son only what he needed to know. My wife accompanied me to every visit of any kind from the first visit. She wanted to hear it from the doctor. I must confess that my wife is an excellent caregiver. Without describing what she does, she reached a point where she needed to go to a counselor. I cannot be her counselor even though a forty-year career as a minister prepared me for this. It is important to watch her to see if there’s anything I can do for her. Carry my weight around the house is not an option because I try to keep her from assuming the entire load. Caregivers carry a unique burden of trying to help against a disease that doesn’t want any help. I think a low point for me was when I realized she followed me, watched me for anything out of the ordinary. I had to pass a driving test for quite a while after the disease struck. One day I stopped for a red light. My wife asked what I was doing. I told her I stopped for a red light. She replied it was green. “Pull into that parking area and give me the keys.

  A side effect of the chemo is I am constantly cold. I sit on the couch with my wife, watching TV. She fans herself while I dig deep into the blanket. When I get chilled, I go for Tylenol because the chill often means I will have a fever later. There is a thing called chemo fever, which means your body is fighting cancer. When this happens, I burrow into the covers and lay there till the Tylenol kicks in and I break a sweat. Then the A/C chills the sweat on the sheets and the process starts over during the night. There are several struggles that go with chemo besides the fever. The main one I struggle against is isolation. Chemo weakens my immune system, which makes me stay away from crowds and only eat fresh cooked food. When I arrived for chemo today, I forgot to wear a mask. You’d think wearing a mask constantly would make it impossible to forget, but I tire of wearing one always and I block putting one on from my mind. I was standing in a fast-food restaurant without a mask when this guy close by began coughing. I moved as far away from him as I could, cursing myself for forgetting a mask. Once you get an infection of any kind, it becomes difficult to rid the body of the infection. The safest thing to do is to stay home.

 Chemo is finished, so it’s nap time. Chemo makes me want to sleep a lot. After receiving the chemo and Benadryl, I head home to sleep. My wife appreciates the time I am asleep. I think she believes nothing can go wrong in bed. When I get to the bed, I yell,” Night, night, I love you.” I do this because I love her, but I also am telling her I made it to bed without falling. If you are in the doctor’s office and they ask if you’ve fallen lately, say no, regardless if you have. They seem to go a little crazy when you report that you have fallen. I fell three times, and they sent me to chemo school to determine the reason behind my falls. Turns out I was dehydrated. I felt like I was on trial when they asked questions to find out why. If you tell someone that you fell, be ready to answer questions why it happened.

  How do you describe the journey of cancer? My wife describes it as dancing the Cha Cha. You make two steps forward and one step back. My story omitted so many details, from drug reactions to seeing God at work. To face the movement forward and back, I have a motto that I keep saying a lot. “Just keep going!” Jimmy Buffett wrote in a song, “Breathe in, breathe out, move on. So many challenges pop up it leaves you shaking your head. You just need to face each challenge as it comes. With so much happening, it is so important to be your own advocate. Doctors are human beings capable of making mistakes. One must read, research, and ask questions. One must also say no. My oncologist wanted me to have this ridiculously extensive surgery. During the conversations I had with several surgeons, I explained to them why I thought this was a bad idea based on my reading. I didn’t have the surgery. I read and looked at national cancer clinics sites, discovering the problems with this surgery and my cancer. Remember, cancer isn’t just a diagnosis but a journey. Travel the road with intention. Intention entered my journey one morning at three a.m.; I woke up angry. I shot out of bed and paced around the house. It hit home to me that cancer was controlling my life. I decided that night I would take the challenge to live. Cancer was no longer in control. Even taking a desire to live it is a daily challenge. A line from a Jimmy Buffett song summarized this desire. “I’d rather live while I die than die while I live.” Get off the couch. Get out of bed. Live.