Still, I fight

In 2016 I was experiencing a lot of nausea, vomiting and diarrhea.  I chalked it up to bad food and hangovers.  In July of that year I encountered loss of appetite and extreme weight loss.  Kelly convinced me to go to the emergency room.  I was skeptical but I went.  That was when they found the mass on my pancreas.  It was diagnosed as pancreatic neuroendocrine tumor (PNET for short).

The first form of treatment was lovinox blood thinners to help remove the blood clot near the mass.  No one advised me to stop taking aspirin during this treatment.  I developed an ulcer in my duodenum and bled out internally through my digestive tract.  My hemoglobin dropped to 4.9 and I was as white as a ghost.  I spent seven days in the hospital.  Still, I fight.
I went through nineteen rounds of chemotherapy, fifty-seven individual sessions of carboplatin and etopicide.  Still, I fight.
I have had infusions of iron, magnesium and potassium to help my blood chemistry.  Still, I fight.
After each round of chemo a device is attached to me.  It is designed to pump more chemicals in my system to boost my white blood cell count.  Still, I fight.
Despite what you see in the movies nausea hasn’t really been a big deal for me.  But I did have a very bad day of it.  I was vomiting every twenty minutes.  Late in the day a sales rep tried to reach me for a deal she was working on that was never going to happen.  When I didn’t respond to her immediately she escalated me to management.  Still, I fight.
I have had nurses miss my veins when putting the IV into me.  It burns and is painful.  Still, I fight.
I have had well over a hundred blood tests.  Needles constantly drawing blood from me.  Still, I fight.
Alcoholics and people with cancer in the liver develop a condition called ascites.  It is the build up of fluid in the peritoneal cavity.  It squeezes the other organs to where you have trouble breathing, eating, drinking and sleeping.  I was to the point where the only comfortable position to sleep was sitting upright in an office chair.  The outpatient clinic was draining off up to ten liters at a time.  Finally they installed a drain tube in my belly so that I can do this from home.  It takes me about thirty minutes from start to finish.  Still, I fight.
I also have pancreatitis.  The pancreas is unable to produce enzymes to help digest food.  As a result everything passes through you and you still lose weight no matter how much you eat.  I have to take a drug with every meal that reproduces that enzyme.  Still, I fight.
I have suffered uncontrolled bowel movements.  It is frustrating and humiliating to crap your own pants.  It is demoralizing.  Still, I fight.
Through all this I still have diabetes.  With my whacked out blood levels I have experienced severe blood sugar crashes.  I have been playing with my own insulin levels without the advice of the doctor.  I haven’t had a crash in awhile.  Still, I fight.
My right leg swelled up from my foot to my knee.  It made walking difficult and when I was in New Orleans last month I stumbled around like a broken man.  After my plane landed on my return a police officer saw me in distress at the airport and asked if I needed help.  I politely declined.  The oncologist office urged me to go to the emergency room.  They diagnosed that I had a blood clot behind my right knee.  Still, I fight.
I am an emaciated skeleton with a huge distended pot belly.  I have lost almost all my fat and muscle mass.  When I received an injection this month the nurse remarked that I barely had any tissue on my hip to inject into.  I wake up several times during the night because with the lack of muscle and fat I don’t have that natural padding to sleep on.  I have to adjust positions to keep from getting sore.  Still, I fight.
In New Orleans I encountered a bouncer who made fun of my appearance, the emaciated skeleton with the pot belly.  He and his buddy had a good laugh at my expense.  If making fun of me helps them feel better about their lives I feel sorry for them.  Still, I fight.
I am on oral cancer meds.  They caused a condition called hand/foot syndrome.  My feet blistered so badly that my feet stuck to the shower floor and I couldn’t walk from room to room without pain.  Still, I fight.
I have to buy twelve packs of bottled water because the twenty-four packs are too heavy to carry up my stairs.  Still, I fight.
Last week I tripped on a curb.  Lacking the muscle strength to break my fall I went head first into the sidewalk.  It was the first time I took an ambulance ride.  Luckily my CT scan was clear and the injury looks worse than it actually is.  Still, I fight.
I approach all this logically.  With the exception of ascites I have anticipated everything that has happened so far.  I manage this with a modest amount of grace and a bountiful sense of humor.  Finding something to laugh about everyday is key to keeping my spirits up.  Knowing what to expect and logically planning for it keeps me mentally prepared for everything the disease throws my way.  It will get worse.  Still, I fight.
The average life expectancy with stage four PNET is twenty-three months.  That puts me to July of this year.  I am pretty confident I am going to make it to then.  The five year survival rate is sixteen percent.  I know the odds.  Still, I fight.
This is not a battle, it is a grinding war of attrition.  For every side effect and debilitating symptom I have to develop a counter move to combat it.  Still, I fight.
Still, I fight.

7/27/16

Author’s note:  This is a recollection of my events from a year ago.  There is no need to panic.

I get the results of my endoscopy.  I have a large ulcer in the duodenum as well as several smaller ulcers.  They are still feeding me whole units of blood (I think it was five total) as well as a continuous bags of plasma.  I will eventually develop ascites, which is fluid retention in the abdominal cavity.  In a couple of weeks a procedure will be performed where that is drained.

I move from liquid diet to unrestricted diet.  That means I can have anything, despite my diabetes.  I order lasagna from the menu and it is surprisingly one of the best lasagnas I have ever eaten.  Later in the evening a nurse notes that I am diabetic and has me put back on the diabetic menu.

Early in the morning I have a strange encounter with the phlebotomist.  I need to use the bathroom.  I can get up and go to the bathroom on my own as long as the IV’s and electronic leads are untangled.  For some reason the phlebotomist seems intent on helping me even though I don’t need it.

I also shower just before midday.  This causes the nurses some concern because I disconnect everything.   They left me waiting for forty-five minutes before I decided to go it alone.

The stay at the hospital has increased my anxiety.  I know that I need to be here but I desperately want to go home and sleep in my own bed.


You will have only a handful of friends that you keep throughout your life.  It’s not that you have a falling out with friends, most are transient in nature.  If they get married and you don’t, they start finding other married friends to hang out with.  If they have kids and you don’t, they will start hanging out with other people who have kids.  You move to another city, a new job or other changing circumstances you will find that those old friends will replace you with new ones and you will do the same.  There is nothing malicious about this, it just happens.

But you will have a handful of friends that will always be there.  I haven’t seen one of best friends from college in years but we still chat pretty frequently.  I can walk into a room right now and start giving McKinley hell about something (in that good natured way that guys always give each other hell) and we’ll pick up from the last time we had seen each other.

And sometimes you will have a falling out with friends.  There are people that are negative in your life and you just need to let them go.  I had a falling out with a couple of people in 2015.  I stopped spending time with them.  No need to get in the details about the falling out, we just stopped hanging out.

One of them reached out to me while I was in the hospital.  He had seen (or been made aware) of my issues via mutual friends.  He reached out, asked me how I was doing, and I updated him about my situation.  It was a friendly conversation until it took an ugly turn.

“You need to tell Kelly and Jerry not to post your business on Facebook,” he said via text.

I didn’t understand where this was coming from.  I asked Kelly and Jerry to update people.  I had a lot going on, was often unsure how to respond to people and tied up with doctors or nurses when I wasn’t trying to sleep.  Kelly and Jerry had the biggest reach to everyone I know.  Both of those people went out of their way to help me and I am indebted to them.

“They are both competing with each other to get the biggest scoop on your life,” he said.

“I’ll let them know that they shouldn’t do that,” I responded back to him.  Then I put the phone done.  I have no idea what prompted this bizarre rant but I wanted nothing more to do with this guy.  He sent me additional text messages over the next several days but I never responded.

After that message I became cautious as to what I should say to people.


Aside from that brief and bizarre episode everyone has been positive to me throughout this.  I am grateful to everyone who visited or helped me in someway.  Oftentimes I am overwhelmed with all of the support and don’t know what to do with it all.

7/26/16

Author’s note:  This is a recollection of my events from a year ago.  There is no need to panic.

The endoscopy is scheduled early in the morning.  I am wheeled down to the procedure room.  The doctor is there as well as people to assists.  I am also put under with anesthesia.  That sense of lost time is disorienting again.  I am awake… then awake.  Apparently I had a ten minute conversation with the doctor that I have no recollection of.

I won’t know the results of endoscopy until the next day.  In the meanwhile I am still on the liquid diets of soups, puddings and ice creams.  I receive visitors and answer text messages.  In the early evening when the flow of visitors stop I pull out the laptop to get some work done.  I don’t want to fall behind on work so I proceed to spend the next four hours answering e-mails.

Sleep is challenging for me.  My only experience with hospital beds is at this hospital.  The thin mattresses are not comfortable.  The lack of sleep is contributing to my anxiety and irritability but I remarkably stay patient and cordial with everyone.

7/25/16

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Author’s note:  This is a recollection of my events from a year ago.  There is no need to panic.

When I was in the hospital a week before I gave Kelly a key to my house.  She made a copy for herself and gave me the spare.  It is a Hello Kitty key.  It’s on my key ring right next to the Darth Vader key.  I freely admit that I live the life of a large child sometimes.

Today she lets herself into my condo using the copy of the key.  Kelly finds me sitting on the edge of the bed.  I tell her she didn’t have to come, that I could have driven myself to the hospital.  She might have yelled at me for a minute.  Regardless, I am going to take a shower before I go.  I am mortified at the thought of admitting myself into the emergency room to have the doctors and nurses smell my body odor.  But showering is a struggle now.  While Kelly packs a bag for me I sit in the tub and turn the shower on.  I tried to improvise a bath stopper with a coffee mug.  The previous stopper had been discarded after too many clogs.  The coffee mug I use to cover the drain is ineffective so I just sit in the shower and wash myself.

It takes me several minutes to put on clothes.  Kelly has taken my gym and laptop bags and packed them in her car.  I make my way downstairs and climb in.  In the short drive to the hospital I realize that my vision is blurry.  Driving to the hospital would have been a mistake.

She drops me off at the emergency room while she parks the car.  I sign myself in and collapse in a chair.  This time when the wheelchair is offered I take it.  My skin is white, almost translucent.  My eyes are completely white, with the blood vessels in my eyes clear.

The ER doctor asks me if I have noticed a black tarry stool.  I can’t really say for sure.  I haven’t been paying attention and I had been constipated anyway.  He’s going to perform an exam and he asks Kelly to step out.  I crack a joke and tell her she can stay if she wants to.  I never lose my sense of humor.  He checks and it confirms what he suspects – I have been bleeding internally in the digestive tract and it has been passing through my stool.  They test my hemaglobin.  It is 4.9.

It was the blood thinner shots.  While I was taking the shots I took the other medications I was accustomed to, which included aspirin.  No one had ever told me to stop.  Somewhere in my digestive tract I have developed an ulcer and it has been bleeding for the past five days.

They hook up an IV of plasma immediately.  I remember that they stepped out for awhile.  While they were gone I play a round of Candy Crush on my phone.  I beat the level and move ahead of Anayra again.

Kelly comes back and sits with me.  I assure her everything is going to be okay.  Through it all I keep on cracking jokes.  It hasn’t hit me yet how severe my blood loss is.  I will not understand it until several weeks later.

I am admitted to hospital and taken to my room.  It is a liquid diet for me because an endoscopy has been scheduled for the next day.  I am put into a gown and the plasma is switched for whole blood.  I will be on IVs for the next four days.  There is no discharge date in site.  I am disheartened by all this but I know that everyone has a job here to do so I do my best to remain positive.

I can have soup (cream of mushroom), pudding and ice cream.  I order it all.  On my first night in the hospital a nurse sits and talks with me for awhile.  Everyone else may be worried but I am not.  I will make it through this.  It is not my time yet.

7/23/16 & 7/24/16

Author’s note:  This is a recollection of my events from a year ago.  There is no need to panic.

I am like a little old man.  We are in the middle of a typical Texas summer and I am freezing to death.  I grow increasingly tired and just sit in a daze most of the time.

It’s Saturday morning and I want to get breakfast.  The new Star Trek movie is out and my plan is to catch the morning matinee.  I head to IHOP and order the quick two egg breakfast.  I am the only person in the restaurant who is wearing a black windbreaker.  I don’t even take it off to eat.  When it comes to paying my tab I remember nearly collapsing at the cash register.  Still, I make it back to the Jeep and head to the theater.  The best thing about the movie is that once I make it to my seat I can sit the whole time.

I tell Kelly what is going on.  She says I should go to the emergency room.  Remembering my last experience I tell her I will put it off until Monday.  If I go to the hospital now they won’t do anything until Monday anyway.

Sunday is even worse for me.  I can’t walk from room to room without becoming exhausted.  I make it from the bedroom to the living room only to collapse in a heap and rest for several minutes.  I forgo a shower on this day because I don’t think I can stand long enough.

The one notable thing I remember about Sunday is going through the post paycheck ritual of paying my bills and going through my mail.  Normally this takes me about an hour but for this day it takes me a full six hours to get the task done.  I am so tired.

7/22/2016

Author’s note:  This is a recollection of my events from a year ago.  There is no need to panic.

Something is wrong.  I shouldn’t feel exhausted.  Maybe it is a side effect of cancer?  Or maybe I am still recuperating from my hospital stay?  Regardless, I feel very tired.

I have an appointment with a surgeon today.  He will go over my case and decide if they should operate.  As soon as I get out of the shower I lie down on the bed for a few minutes.  I just need to rest.  After about ten minutes I get up and finish getting ready.

When I get to the doctor’s office he tells me, “I am quite concerned about your color.  You look very jaundiced to me.  I don’t think your in the best physical shape to withstand an operation.”

I am disappointed.  I had hoped that they could cut the cancer out of me but that is not the case.  As I leave the office I collapse into a chair in the main lobby.  I sit there, dazed for the next twenty minutes as people walk by, trying to muster the strength to get back to the Jeep.

I leave the office lobby and walk to the garage.  I have to walk up the incline to make it to the Jeep.  It is maybe a forty-five second walk but it feels like forever.  As I walk I can feel my breath giving out and my heart beating in my chest.  I am exhausted again by this short little walk.  I make it to the Jeep, struggle to climb in and rest for a couple of minute before turning the ignition.  I hope maybe this can pass in the next couple of days.

7/20/2016

Author’s note:  This is a recollection of my events from a year ago.  There is no need to panic.

It is my birthday and I am getting out of the hospital today!  I hope I never have to stay in a hospital again.  It’s wishful thinking… I am bound and determined to be hospitalized again at some point.  I get my discharge orders and have to stop at the pharmacy for the mountain of medication I will be taking.

The first thing I do when I get home is take that long shower that I have been missing.  I scrub myself down twice.  While in the hospital taking a shower was an arduous task given that I was wired with monitors with IVs feeding into me.  But now I feel great!  Work-wise I hit the ground running.  I have a ton of e-mails that I need to catch up on and I am schedule to talk about one of my publishers on our blog radio show.

There is nothing really planned for my birthday.  I think everyone wasn’t really sure what to plan.  There was a chance that I could be spending my birthday in the hospital.  Regardless, Kelly and Amanda have asked to go to the movies with me.  It is a low key evening with a couple of friends.  I choose a safe comedy – Mike and Dave Need Wedding Dates.  Halfway through the film I leave to go to the restroom.  I have to take one of the blood thinner shots which is administered through a disposable needle.  I am in the theater bathroom and I have successfully administered the shot but now I don’t know what to do with the needle.  Do I just throw it away?  What if it sticks someone?  I finally wrap it up in some paper towels and discard it in the bin.  I rejoin Kelly and Amanda in the theater.

What I don’t know is that I will spend the next five days killing myself with these shots.