This Vicious Disease

I am sick of being sick.  I hate this disease.  It is killing me and there is not a darn thing I can do about it.  It takes a bite out of me every day.  Just a little piece, but enough to make me notice.  Every day.  No exceptions.  It is hard to deal with, let me tell you.

I run into people who know me every time I leave either of my homes.  They all ask the same question and make the same comment:  “How are you doing? and You look really good!”  This gets to be irritating, even though I know they mean well.  Try answering that about five times a day…with a smile and patience.  I usually say dismissively “I am fine, thank you.”  And go on my way.  I have learned that people do not really want to know how you are doing.  There are a few exceptions, but very few.  So it is best to move on as quickly as possible on friendly terms.

The truth is hard to deal with.  I rarely go out to eat with friends any more.  I miss my friends, but it is not worth it.  When invited, I usually say “I would be bad company today, maybe another time.”  And that ends it.  Few people call any more and that is OK, because I am bad company.  For them and me.

More than once I have been eating lunch with someone, when Death walks in the door and sits down in the empty chair next to me.  It is not anything either of us can see, but that little voice is there, saying “It won’t be long.”  It is just a frequent reminder that I am not going to beat this thing.  It is like a sniper patiently waiting to pick me off.  Death stalks me just out of range, planning the surgical shot, waiting for weakness to show, finger taking up the slack on the trigger.

I will be riding my motorcycle, working in the shop, swimming laps or sailing and that little voice worms into my concentration hissing that my death will not be pretty.  A bedridden slide into eternity, hopefully overseen by a few family and friends.  Relatively quick, I hope.  Maybe three days says my oncologist, if I am lucky.  Until then, I try to stay vertical another day.

I am tired of the pain, which grows steadily worse.  But what can I do about it?  There are choices.  I could take more of the morphine-based painkiller.  But it does not kill the pain.  It just dulls it.  The drug can make it bearable and even almost imperceptible, if I am occupied doing something else.  

 Strangely, if I can’t sleep at night, I usually go upstairs at about 2 am and play music on my guitars, because the pain goes away when I am playing.  Figure that.  However, if I take more painkiller, I am groggy and tired.  I do not like that, because it takes away from my activities.  Don’t take the pills and I hurt, which makes me cranky and difficult with people.  Another reason to be alone most of the time. 

 Recently, I was swimming when I got really zinged.  I had just rolled a turn when a knife-like, shrieking pain zipped up from the right side of my abdomen, stopping just under my lower right rib.  It was enough to double me up.  It happened again yesterday while I was riding my Ducati to Russiaville.  It definitely got my attention.  If that is what I am going to have to deal with as the end approaches, I am in trouble.  Big trouble.

Sleeping is a problem.  Pain keeps me awake, even while the drugs significantly reduce the pain to a dull ache.  Sleeping is challenging because of the chemotherapy.  My chemotherapy is in two parts, or it used to be.  I used to go to the oncology center and get pumped full of poison, which supposedly kills the cancer.  At the same time I take a powerful drug called Xeloda, which kills fast dividing cells without discriminating what kind of cells it is killing.  Xeloda kills platelets which are made in your bone marrow.  If too many platelets are killed, you run a danger of bleeding to death from a minor cut, so I am told.  Like shaving or brushing your teeth.  I am not kidding.  No platelets and your blood will not coagulate.  So when your platelet count gets too low, as mine has been nearly all summer, in addition to being dog-tired all the time, the infusions are terminated and I just take the Xeloda.  This has the effect of theoretically letting the cancer grow.  Damned if you do, damned if you don’t.

Apart from the constant foul taste in your mouth from the Xeloda, I have tremendous sweating at night.  It has gotten to the point that I sleep on a large beach towel.  If I do not, I will be awakened at 2 am because I am literally laying in a pool of odorless sweat that has turned the sheets into wet rags.  

 Lately, I have another towel on top so my covering sheet does not get soaked.  Not a big deal you say?  Tonight, take a cold shower and then get into bed without drying off and then pour another quart of water on yourself for good measure.  Then try to sleep.  No fun at all.

The symptom that bothers me the most is the numbing fatigue.  I cannot describe it except to say that it is deadening.  It is like I have sprinted a race and am resting, trying to recover.  Except I never recover.  Take a nap, you say.  Been there, done that.  The nap has no effect.  I wake up just as exhausted as before the nap.  Oftentimes worse, because it takes me a little while to recover from the drugs, which seem to anesthetize me, when I sleep.  The really weird thing is that I can swim a mile a day, as I have this week with no apparent effect at all.  Yet, if I walk up two flights of stairs, like I did today in the courthouse, I have to rest.  Go figure that.

I try very hard to stay occupied.  If I do that, the pain does not seem to be as bad.  If I get tired, recognizing that a nap is useless, I try to do something else to keep my tiny mind occupied and off the disease.  This works most of the time.  Thus, the active part of my day is extended.  For example, if I am working in my woodshop and become tired, that is a good time to go for a ride on the Ducati.  I can assure you that that silly motorbike, being so stupid fast, takes my mind off the fatigue and pain.  (I hit 110 mph on my way to Burlington yesterday.)  But switching activities does not always work.

One of the things that you rarely hear anyone who is seriously sick talk about is how to deal with people with whom you are close.  I have to deal with my mother, who suffers from the early stages of dementia.  Mostly, if you do not know her, you would not think that she is ill, just a little odd.  When she flips the switch to recognize that I am Mike, not Matt, or her brother, Homer, she invariably asks “How are you feeling?”  How should I answer that very reasonable, well intentioned question?  Tell her the truth and upset her in her last days.  I think not.  Give the usual “I’m fine”?  That doesn’t work, either.  It just leads to more probing, well-intentioned questions.

Recently at a family gathering, a certain relative that I really like asked me no less than six different times in ten minutes how I was “really” feeling.  After five “I’m fines”, I let loose.  I told the person that I hurt all the time, that I was often nauseated from the drugs, that I could rarely sleep, and that I figured I might have a few more months at most. I told this person that a liver stent was keeping my bile duct open, but just barely, and when it finally packs up, I will die a painful, ugly death. The person looked at me in horror, turned and walked away.  I left out that I had not turned yellow and was not spitting up blood, yet.  Needless to say I fielded no more questions from this person, who appeared to be visibly shaken with my graphic, but accurate, reply.  What was the expectation?  I do not know.

Recently, my wife and I attended a wedding, followed by a reception for the couple.  When I got up from the shared table, my wife was bombarded with questions from people who all wanted to know “how is Mike, really?”  She had not experienced this before and it shook her.  “What am I to say?” she asked.  “I don’t know.  Tell them the truth, I guess.”  What a hassle.

Consider this.  My lovely wife has worn down four crowns and has had to replace them in the last year.  Why?  Because worrying about my illness causes her to grind her teeth at night.  What can I do about this?  Nothing.  I am harming the most precious person on the earth to me.  That stinks.

Even my dog, the Iverson, knows I am sick.  Oftentimes, when she thinks I am asleep, she jumps up on the bed and puts her nose next to my mouth and sniffs.  I think she smells the chemicals.  I am sure she knows I am short on time.  She worries about me and probably wonders if anyone is going to take her to the Dairy Queen after I am gone.

There are only three things that keep me going.  First, I regard dying as letting my wife down.  I have the attitude that I have to keep going, until I bore into the ground.  Second, there are a lot of people who tell me I am an inspiration to them, particularly those with the disease.  How can I let them down?  I do not feel like much of an inspiration.  I just put one foot in front of the other for another day.  Finally, there are my wonderful friends, who are always encouraging and genuinely interested and concerned about my health.  How can I disappoint them?  I can’t.

I am not looking for sympathy or pity.  Save it for someone else.  I am just trying as best I can to live a normal life.  It is not easy.  My faith as a believer helps a lot.  I like what C. S. Lewis said about departing this “bent” planet.  “There are far, far better things ahead, than any we leave behind.”  Except for leaving my beloved Lynne, I think he is right.

Mike out.