Wednesday, October 3, 2012

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.


  1. Man-oh-man, Mike. I do believe you nailed it - the pain, the irritation, the loss of patience, the fear, and the frustration of leaving our most beloved beings. For myself, I see it as a road that ends abruptly, a light that in the end is extinguished much too soon. Thank you for sharing your thoughts and your feelings. It's tough. I know. I will always remember you when I pass a YMCA, my local airport, a Ducati, when I fly to Raleigh, and when I pass by a DQ. Well, I'll actually think of Ivy when I see a DQ.

  2. Mike, thank you for your honesty. I hate this for you and Lynne. I don't understand any of the whys of this. All I know for certain is that God loves you deeply and will give you all that you need to go through this. He will never leave you or forsake you--that is a promise. I love you both and will continue to pray for strength and courage as you walk this hard path. Sherry

  3. good writing - straight from the gut... I only wish it was a novel and not your real life experience of suffering.... love you both, janis

  4. Mike - Let's go fly! I'll supply the airplane! On another matter... the Kayak is not just a piece of furniture any more! She floats... very well I might add!

  5. Mike, thank you for your honesty. If people can't take it, then they won't continue to ask. It is your pain - physical, emotional and spiritual. It's okay to express it. Many of us are glad you can do so. It takes a lot of courage.
    You and Lynne are in our prayers and hope for some good days for you yet. People forget "There but for the grace of God, go I".

  6. Mike, I don't know you, but I feel compelled to respond. First what Judy has to say is some good & loving words! I don't know how you feel, but you certainly gave a very descriptive verbaige! What I'm about to say may seem cold and possibly cruel, but I feel compelled to do so anyway! First of all you and your family and friends are living with cancer! That shit of saying that you are dying of cancer is just bullshit! Everyday, every moment that God gives us one more day to go to Dairy Queen, kiss your most precious Lynne, pet Iverson ... is a gift! Pain and all! It is a gift from God! The good news is that God gave us Jesus to forgive us of our sin so that we can live eternally in the very loving arms of our lord! Personally I am looking forward to some day being held in those mightyfull arms and kissing the sweet checks of our Jesus. Mind you I'm not in any more hurry to get there than you are, but with all your strength and all your will the day will still come when our Lord and savoir will come for you! Rejoice! Open your arms to him! He will free your pain! He will also free the pain of your loved ones and your friends, because in Christ's words he has told us to celebrate your life! Even though it may come sooner than most, it is certainly worth a major celebration! As all life is! And to celebrate that you will finally be in peace with our Lord and Savoir Jesus Christ! You are so loved! And the next time someone asks how you are doing, well tell them! But also tell them that it won't be for long and with that in mind let them know that if Jesus could suffer on the cross for our sins, this is the least you can do to forbear. Go in peace my friend & know that you are not alone!♥♥♥♥♥ I will be looking for you on the other side!

  7. Thanks for being real! I dont know you but my heart cries out to you and all those who love you. There is nothing pretty about this disease. It has no mercy! I have a friend who severals weeks ago went through what you are going through. One thing Mike she got though it and so will u. God pomises that. This is just satans last dig at your flesh, but he doesnt win! God promises that. Sometime I think to myself when will I go and how will it be and Im not even sick! Just natural thoughts to a seemingly unnatural event! We are all going. This isnt our home. We have a future and a hope! A home waitting for us where we wont have to leave and loves ones that are there and loved ones that a coming. I will see my friend again, and when that time comes for you, you will see your love ones again and they will be waitting and always thinking about you, and satan cant stop that GOD promises!

  8. Wow Mike. I got chills reading that.
    I've known you a long time. I'm sorry we never really got past the aquaintence stage, but I am proud to call you a friend. Since learning of your disease, I, like many others have had that awkward moment when we ask "how you doing?" I'll never, ever forget your initial response to that from me when you flatly said, "I'm dying." Talk about leaving someone speechless.
    Don't ever question if you've been an inspiraton to others Mike. You most certainly have been. I've quitely followed this blog since it's inception and have watched video clips or listened to the audio of your messeges at Huddle or at Oakbrook. Your story is an inspiration of faith. I admire you a great deal and will be deeply saddened when you are called home.
    I find myself looking over at your garage/workshop when I drive past your house or am out walking Tess. I'm hesitantly hoping to see you working on some new project and want to stop and say hello. I say hesitantly because I don't want to impose on you or seem bothersome.
    I've considered trying a note to Ivy's neck when she stops by to sniff noses and other doggie parts with Tess and Bentley, but don't want to freak her out. I enjoy her occassional visits.
    Mike, I pray to our Father that you will leave this place peacefully and with full knowledge that you made a difference in so many people's lives. Mine included.
    You will be greatly missed.
    Jeff Kirk

  9. Mike, reading this blog reminded me what a pain in the ass you are. Nothing has changed from healthy to sick Mike. As my lawyer, I found you could be quite dismissive, extremely annoying, and seemed to harbor contempt for your own client. And I wouldn't have changed a thing. I got it. God Bless you and your family.

  10. Judy again!! Lynne will get through this. I was widowed when I was 27 with two small children. We made it. How, I'm not sure but prayer and acceptance that we don't know why God does what he does or allows things to happen as they do. My faith is much stronger now as will Lynne's be. There are so many feelings that go along with grief and loss and no two people go through things exactly the same. Take care of yourself now. Lynne is a survivor but I'm sure you already know that.

  11. Mike you have been a family friend and i am pleased to say i met you in this life time ,God has a time and a reason for all of us ,And we shall not ask why things happen to good or bad people , I pray for you and your family that God will be with you in this time of your life and your family as well , And i pray for a healing for you as well ,I know there is nothing i can say to make things better for you , But i know the old saying is when you here a bell a angel gets its wings Mike ,When its your time only god knows it and i here that bell i will to the sky for you because i will know you just got yours my friend and the good thing is i know we will meet again in the end and will be no more sadness but happiness , joy , and peace with no more pain . MAY GOD BE WITH YOU MY FRIEND . Ronnie Barela

  12. Iverson just texted me. She says she's not getting enough press in your blog posts...and she wonders about the use of Tic Tacs. (She assured me this was all well-intentioned sarcasm & hoped it would make you smile. She is however wanting more Dairy Queen. Seriously.)

  13. Just wondered...if it were reversed what would you say to someone in your position?

    1. i would tell them that there are only three things that count for anything: faith in the Lord, your spouse/ family, and friends. nothing else matters. live like it. i would tell them that you have to be strong, because, like it or not, people will be watching how you handle your situation, because you are being tested. you are an example. i would tell them that physicians do not have the final say. the Lord does. no one else. i would tell them to try to ride their remaining life until the final crash. with your hair on fire. out.

    2. the above was written by Mike, not Lynne, who is sound asleep beside me. out.

  14. Mike,

    I was one of Allyson's long-time KEY classmates. I've bookmarked this blog and check in from time to time, and i have to say it is encouraging. I've questioned a lot of things about my life of late and what comes next, and that's being perfectly healthy. I recently found out I was going to be a father for the first time and your fight encourages me even in that arena. It reminds me that my troubles can be conquered with perseverance. Thank you for that.

  15. I haven't read your blog for awhile, so I am just now responding to your post. This post really impacted me, because my mom is dying from cancer also. She doesn't express her feelings, so this post gave me a lot of insight to what she is really feeling. Thanks for opening my eyes. I look forward to seeing you on the other side!