The c Word

November 13, 2010 and not even a year since my diagnosis.  What if the chemo continues to work?  Ah how we love the hypothetical.  What if there is a miracle, miracles do happen every day.  It’s well before dawn and I cannot sleep, not for the recovery, just restlessness.  This is more the norm for me and has been for years.  I rarely use an alarm clock and don’t need it when I do because I am a very early riser and early faller if you will.  Drives Vanessa crazy.  

I am feeling good and continue to heal.  The wound still seeps but less as time passes.  It is covered with a tape that will wear off.  It still slows me up and I cannot wear pants yet so I am in my sweats and feeling pretty good.  What a blessing it is to feel good.  I’m at the stage of sitting too much but not quite healed enough to get active. 

Controlling the lymphedema has been more challenging but Inger and basic exercises and walking as possible seem to be holding it at a level that is workable.  The neuropathy continues to lurk in my feet so I am trying to be careful to stay on the meds for it.  By the afternoon I found I had to take a pain pill to stay comfortable.  A couple of sneezes in the morning pulled something and I am so sick of this not healing up, although it looks like it will in time.  Clearly I will be on limited travel going into the next week. 

We went to the Methodists for a pancake breakfast this morning.  They do it annually as part of the Christmas in Pendleton event.  Standing in line the fellow in front, his red baseball cap, jacket and jeans, I would guess late sixties in age turned and noted me leaning on my stick.  In recovery my left leg has a deep muscle ache and is weak and the suture area is very sore, so I rely on the stick.  Frankly I don’t believe it is any one’s business why I would use a cane and often when asked my response is considered sharp.  For me it’s like swatting nosey flies.  He looked at me and asked ‘is your knee?’, ‘No’ I broke in, ‘I have cancer, the chemo caused me some problems with the left leg.’  With that crushing verbal swat at the nosey fly,  ‘Oh’ came the sheepish reply as he turned his back to us and no doubt contemplated asking a woman how far along she is in her pregnancy first chance he gets. We did not talk further and I lost him in the room after we were served.  I suppose if it was a knee we could have talked style, mechanics, issues, etc.  The c word has a dampening affect on conversation.

I do get a lot of compliments on the cane, cut from a vine by Dad so many years ago and still light and sturdy.  After all, if you have to be a hobbler might as well be a memorable one.

Past The Point Of What If

We waited about an hour and the Doctor came in.  He looked at the stitches and approved removing the staples.  A large knot has formed in my navel area but he was not too concerned, it heals or we heal it was his attitude. To my surprise he explained to his nurse that my case was the first time he had encountered severe edema as a result of chemo.  He explained in greater detail to me than previous what he found in surgery and the reasoning for stopping the procedure midstream.  The staples were plucked out carefully but not without stinging pain.  I breathed through it without any difficulty.  Dr. K released me without restriction. 

We did not wait near as long for Dr. H.  I was first examined by his fellow and a med student.  The student did an impromptu comedy skit dropping a pen and when picking it up another fell from his coat pocket and when picking it up down went a third.  Jocelyn showed some mercy on the embarrassed fellow and I noted Dr. H kept his collection in is side pocket, experience pays. 

Dr. H explained that there is nothing to do at this juncture.  Jocelyn put up a valiant protest but the Doctor’s reasoning was compelling.  In essence there is nothing left to do.  At present the cancer is not growing, but it is there and in a large area in my left abdomen.  Even with the surgery removing my digestive tract, bladder and lymph nodes some cancer would have been left so they stopped when they did.  We will watch and wait.  It will start to spread again at some point and at that point we will decide what to do.  Jocelyn cried facing the reality that her Dad was just not going to find that magic pill or definitive treatment to cure him.  Mercifully she left the room, sparing me starting at that point.  As she left Nurse Marietta gave her quiet comforting words.  She told us all to pray, and not discount the importance of it.

Dr. H’s analysis was nothing new to me. This had all been carefully explained to me at the hospital by both Ologists.  Given my good health and lack of symptoms the quality of my life each day I have left takes precedent in deciding my course of treatment. On this we all agree.  He offered some hope, pointing out things that may be done once the disease begins its inevitable onslaught.  Nothing is without great risk of complication at this stage so we must take care in deciding when the time comes how much suffering will come with any extension of my time here.  Once again the reality hit home on me as I sat in that exam room, that I may very well pass as my Mom did, in hospice and in great pain.  Somehow I do not fear this outcome, having gone through it with Mom, but I am a long way from there yet.  Every hour is the battle, every day another day in the war.   

We put the entire episode behind us for a lunch at a fashionable place in Broadripple.  We dined outside on gourmet sandwiches and celebrated Vanessa’s day.  Jocelyn made it so special for her Mom.  On the way home we found our way to a German bakery, where Vanessa procured a piece of genuine German chocolate cake and later in the evening we celebrated with her cake and a brownie for me.

Now in the early morning I look back on something I pondered a few years back, which ironically seems so relevant to my present state.

Thursday, November 16, 2006 

If there were no more hypothetical questions

I must ponder, as I sometimes do, at a question hypothetical, false or true?
What if, I say, in a hypothetical way, if there were no hypothetical questions asked today?
What would I do?  What could I say?  How could I work? 

Would fun run from play?
There would only be IS, as it IS what it IS.

No coulda’ woulda’ or shoulda’ here. 

No hypothetical questions to fear.
And there would be no ifs or what ifs if you will.

Only the is, from far to near.
There would be no progress on this faithful day, People would stop, and the earth would be still.
Where then without the hypothetical will fantasy flee? 

To the back of my mind under lock and key?
Imagining the possibilities, impossible though they may be.

This too will be lost to me.
I will lose my curiosity and the gleam in my eye, when a beautiful woman brings on a ‘what if’ high.
But wait, no what if means no regret, ahh, a lining of silver in the dark cloud.
No looking back, on what coulda’, woulda’ or shoulda’ been, no more for crying out loud.
So in the IS there is content.

No what if's, no pressure, no need to vent.
I see what you mean, and I mean what I say, there will be no what ifs in my life today.
No hypotheticals will come into play, and I will ponder nothing on this faithful day.
It will be what it is, no more no less.
I will end the day, and be sure to feel blessed.
But, what if it isn't any fun?

By Michael Courtney

Two Weeks After Surgery

SnickersWatchcat and Danderbomb

Now the darkness settles in.  Deep shadows, cat on the TV tray, alert and eyes dilated.  Black holes now, ears perked, off the tray onto the table, the reassuring picture of Vanessa at rest with her cat standing guard.  What does she see?  I see nothing there, yet her eyes follow and track, left to right and back again.  The cat, only one paw from the wild I think returns to the tray, her self appointed station a couple of times a day.  Sometimes animals save us from ourselves.  I shall rest easy knowing the walking dander bomb is on guard and protecting me from the unseen.

Now Thursday in the dark of the early morning, watching pundits interview pundits on PBS discussing the economy I find myself disappointed with the length of time it has taken me to come back.  Perhaps it’s the flair of carpel tunnel in my left hand sending excruciating pain up the arm and persisting long after.  I just registered where my brace is in general terms.  Not enough energy to get up and get it.  Not enough energy has been my hallmark this week, now down to a pain pill every 12 hours or so I hope to be done with them. 

Today is see the Ologists and get the staples out day.  More importantly it is Vanessa’s Birthday.  I hate the cancer for keeping me from my appointed rounds on her birthday.  I cannot imagine a gift worthy of her love and sacrifice for me during this past year of hardship.  I shall try to make her day a jolly one, despite the hospital meetings this morning.  We will have Jocelyn with us for these consultations, our secret weapon. I cannot tell where my Women are on my condition.  I find in my readings in such publications as the Journal of Urology that various studies have been done on post chemo therapy different from the what I have recieved.  Dr. K felt I might be a candidate for radiation which will put me in the care of the team Radiation Oncologist. After all if I can add a couple of years without it killing me it seems to him I should.  Now from Oncologist to Urologist to Radiation Oncologist my graduation to being a possible candidate for radiation takes me to a new ologist and a new fat file to be created.  Dr. Hahn was not so enthused about radiation so today we meet with them and get the skinny.  No sense second guessing what’s next I think I will just let the day unfold as it will, remembering all day first and foremost it is Van’s day. As I sit here and the PBS news hour takes time to show me the pictures of the most recent killed in our ill fated military forays.  Ten children, ten sons, ten friends gone and all the lineage that may have come from them.  Ironic I should see this at this time, but I am glad I did.  One more Vicodin this morning, I hope it’s the last one I have to take.    

The Other C Card

The pain came from some where, middle, back, low, high.  It crossed, from left to right and again, and then it passed.  Now in the middle it rolls and I feel the brick forming down below.  Suddenly it is there, pushing at the door and not caring I exhale.  With the ring echoing off the walls I had a hard time getting it out, ‘Gabrial’s trumpets’ I declared.

Vanessa, sitting before me showed no reaction, but I knew she heard the comment.  As she turned the bible to John and today’s scripture ‘very funny’ she dead panned.  I am pulling the C card, in this case colon card.  The organ is relearning how to do stuff.  I guess my colon brain was somewhere near the tumor.  In any event it get’s an A for gas passing.

We had a party yesterday for football with beer, sloppy joe, fries and pastries with Jared, Jocelyn and Renee.  Jocelyn did the work and we had a great time.  I was still pretty uncomfortable and taking one pain pill at a six hour interval so probably not much fun, but I sure tried and I sure had fun.  We lost to Philly in a tough one but it didn’t matter. 

Today there is a duck following me around the house.  Every time it quacks it smells like baby took a dump.  Ahhh, the C card, a dream come true, plus a hidden benefit, running from the duck to evade the smell is good for me. 

November and it will get into the 70’s this week. 

It Hurts To Laugh

Look at the fun in…feeling terminal, la da da da da da da da, feelin’ terminal to parody Simon and Garfunkle.  I noted in Van’s notes she made note of my breakdown after my visit with Dr. H.  She had asked me what he said about chemo and I broke down in tears for a moment.  Every time I do that the absurdity of it all seems to overwhelm the tears.  If ever their was a font of humor at a funeral it is I (I have done some of my best work at them as Family will testify), so the disease and the visits with the doctors and the acronyms and the terms and the questions by the Women are intrinsically part of the process that Dr. E talked about in the beginning. 

I wondered if the ologists were reading the same Google stuff that I had been reading.  I remember saying boy I hope I don’t get to that point when I was doing my initial research, and here I am.  I never had pain from the cancer, just from the treatments and unintended consequences.  I asked the surgeon where the pain would come from when it did..  ‘Left leg’ he replied, ‘of course we will give you what ever you need.’  ‘Of course’ I replied.  Sometimes the weight of it hits bottom and comes back up.  Of course I do not want to leave, although I am not afraid for my family, for their strength and bond would see them through my passing and they will all continue to thrive.  I just don’t want to miss out on the show as it goes. Since all of my Women reached adulthood I am surrounded by very beautiful and gracious Ladies.  It is every Father and Husband’s dream.  Who wouldn’t want to hang around as long as possible to be part of it. 

Feeling sorry for me is a luxury I cannot afford and feeling terminal equates to that so I put those feelings aside.  I am staying on the job, keeping my calendar full and taking advantage of my good health and increasing mobility.  Now 10 days since my surgery and I am healing pretty much on schedule I think.  Most of the time I am like an old dog, laying around here and there all day long every day, eating and doing that other thing.  I am still taking the generic vicodin so I do not have to worry about overwhelming ambition to do anything. I am content to just sit in my drug induced haze and heal.    

Freedom of flagellation is a totally unique experience for me.  Mostly gas passing is frowned upon in my life.  Beyond sitting around with the boys there is no appropriate venue for cutting loose.  A delightful unintended consequence to that recovery from surgery was the amazing level of support and encouragement given me to let em’ rip, so to speak.  Farting was a coveted sign of recovery in the hospital, and encouraged by Family and Staff I did my best to work one up and once started proudly ripped whenever I could.  So now these days later we still celebrate the gas although I sense Vanessa’s enthusiasm is waning in this regard.  It is impossible to minimize the miracle of medicine and that we are so advanced that I can have my colon cut in two and reattached and be near normal only a few days later.  I know it won’t last.  Already there are hints that I will have to return to civilization, where farts and belches are socially unacceptable sooner rather than later.  No matter, I shall toot proudly and hopefully often for the time I have to do so. 

Sunday and the clocks are turned back in that peculiar Hoosier ritual whereby we reset our clocks.  Long after Vanessa retired I found her standing at the foot of the bed with that self satisfied look of accomplishment.  ‘There’ she declared, ‘I think I have reset every clock in the house except this hall one (it’s atomic and will)'.  I checked my solar powered atomic wrist watch and it had reset as well.  No small feat resetting the clocks since we are surrounded by them.  As I write I see one lower right, a phone with one next to me, a small decorative thing on Vanessa’s side table, and very large and intimidating round one on the wall behind me, time. 

I am not sure why Hoosiers feel compelled to force themselves by law to give or take an hour.  The entire concept of any typical Hoosier to have such power is a downright scary.

Vanessa makes a fun ritual of the rite twice a year, and I must say I look forward to it as well.  This is not the first time she worked through a part of her process with this ritual in the middle of the night.  I went out for a paper this morning, still pretty sore.  Gerald stopped by yesterday.  When I met him at the door I just felt relief, he and Joe are family now, if you define it as the ability to sync up upon meeting each other and mutual love and respect as you do.  Seeing him for the first time since surgery helped me sense the magnitude of the accomplishment.  Under the knife and back again, as they say, or maybe just I said that, not sure.  I enjoy his stories and projects and we often brainstorm in the classic sense through some homeowner hell issue and the like.  Sometimes he patiently allows me to ramble as I do and more often than not we laugh until the tears flow in our meetings. 

It hurts to laugh, literally, but I just can’t help it. 

Standard Of Care Defined

Wireless and Ready

‘Can I tape this conversation?’ I asked.  Dr K was in at 8 am sharp.  He smiled and replied ‘what do you want me to say?’  ‘Well, it’s ok to say what you have to say, it’s just my Wife will kill me and this way she can be part of the meeting as well.’

So I hit the red button on the little recorder.  Our previous experience with my hospital stays included difficulty getting Vanessa in on the conversations with the key players.  It’s Monday morning at 6AM and I am digging the recorder out of my man bag (it’s not a purse) and making it accessible.  The nurse just came in and told me the urologists were running behind because they were entering their own medical orders.  I doubted that Dr. K or his resident would keep me in waiting until some late morning visit.  I just knew they would be in before Van.  Kudo’s to me on packing for this stay. 

‘Want to go home?’ Dr. K asked.  ‘I’m ready’ I replied.  After he left I hit the stop button and set it on the tray, grinning with the self satisfaction that can only come after decades of marriage that I did something really right for Vanessa.  In the quiet I hit the button and started to doze, only to wild click.  ‘This is Bea, may I help you?’  The question came in stereo from both sides of the bed and the hand held device that I could not find but obviously once again butt calling the nurse.  ‘Sorry Bea, wild click'  ‘OK’ she said cheerily. I must have wild clicked ten times a day.  Every time a patient and understanding reply.  I thought about my last few days, which in spite of my difficulty moving went by pretty fast.  Vanessa ever at my side and Jocelyn each day boosting our spirits and providing her Mother the kind of support only a loving Daughter can deliver.  My Surgeon or his Resident or both every morning, a check in from the chief nurse in charge on nursing care, housekeeping twice a day, ten to twenty IV alarms a day and visiting with my Nurse or her helper (PCA which I believe is Patient Care Assistant) plus the wonder of student nurses and frequent walks around the halls a veritable hiccup engine.  I shall always remember walking with Vanessa and the beautiful and graceful K (who was a masseuse and is now only a couple of semesters from becoming a great nurse according to another nurse that always volunteers more information than I really need.  Must be my inviting face is the only thing I can figure).  Students working very hard, strict protocols, nurse assistants and students walking 7 or 8 miles each shift, Nurses often called upon to change beds with workstations all about are hovered over their monitors if not their patients.   

Through it all an epidural in place and a happy button made it easy for me to greet every visitor with a smile and thank every visitor when they left.  Patient responsibilities begin with thankfulness and civility, period. 

I might be sick and helpless, but I have a responsibility to those who are caring for me to make their job as easy as possible.  The standard of care given me throughout my association with IU and Clarian has been nothing less than excellent.  My stay this time was marked by delays as new software was implemented.  No more post it notes or notes buried in charts.  Request for treatment and order for same will be digital.  Like any thing computer, the best way to learn it is to do it, which is like stepping of a cliff for a lot of people. 

With the hiccups throughout my stay except for sleep and brief periods during the day and of course the pain management I got to laugh a lot, they did not hurt but certainly made conversations challenging, and I am a talker.  When they started Dr. K dryly advised that the gas had to come out the other end before I would eat and I just laughed.  Wrong end, but it was a start.  I learned a lot about those who cared for me, their families, our shared interests, their work and life.  I shared freely with them as well.  We were all a smoothly operating team aimed at me firing out the door never to be seen again if the goal is met.  Smiling is an infectious thing and is easier than a frown, I checked it on snopes after Vanessa and I disagreed on the topic, she of course was right, so I tried to start it from wake up to the end of the day, another reason to just say yes to the epidural.  In the beginning Dr. E smiled and said it is part of the process as he explained the steps and order in which they will be taken.  He scrawled it out on a piece of scrap paper and gave it to me with a caring and sad look in his eyes.  The outcome is what it is and so we go on to the next step.  In spite of the long odds I got the chance to try for the cure and my caregivers put concern for me and my quality of life first every step of the way.  And that was how it was on this step in the process.

The Hospital Stay

Saturday night was the night of short staffing on the floor.  I am glad I was into my recovery.  My nurse made her appointed rounds on time and had time to walk me once, but I felt for her and really did not want to be a bother.    

Sunday and I sharted at 7:20 PM, my intestinal condition came back to life.  Nurse M and J were at the station at shift change.  I took a picture of it, left it and reported wearing a white cape since we all considered it another miracle.  Nurse M confirmed it and we all were pleased. I was allowed one ounce of clear liquid an hour as a reward, which I gladly accepted.  Rex showed up to cheer my day.  Carl was with him, but relatively quiet.  My Corona shirt was a gift, along with hats and a gadget.  As is a family tradition when you go to the hospital you get a bear, and Friday the Girls went down to the Colts shop and got me a genuine Colts bear for this visit.  Surrounded by gifts, flowers and loved ones, wow.

Monday, oh what a difference an epidural makes.  This Morning they pulled it.  Only hours before I had been kick dancing past the nurse’s station and singing between the hiccups.  ‘I think I am going to settle in here’ I told Van.  ‘Good idea’ came her reply.

They left me with the button in the IV, not knowing how I would respond.  Shoulder surgery a few years back gave me familiarity with incision pain so I settled in to see what this would bring me.  Within a couple of hours the answer came and I used the button.  A few hours later I started with pain pills.

This morning I learned I would be released tomorrow, and checking in with Aaron discovered he would as well.  We wished each other the best and he will always be in my heart.  I got approved for a liquid diet and knocked down some bullion, jello and juice in the morning and then cleared for regular diet in the afternoon.  I ordered a salmon sandwich and cottage cheese fruit plate.  The sandwich came microwaved to it’s plate and inedible.  My guess is it will survive for eons in it’s present state were ever it is.

Jocelyn came in the afternoon after devoting so much of the previous few days to me and her Mom.  Our lively conversations and humor shared make the hours fly by.  Monday night for the World Series final and Colts game Ken, Fonda and Loren came in. 

I think a measure of true friendship is the ability to start a conversation right were it left off.  I was delighted after 30 plus years of separation that Loren and I started up right where we left off.  Of course him and Ken had been warming up before hand over dinner.  Ken and Fonda are family for us, so it was a delightful evening, and later in the quiet as I looked at the picture I added up the hidden blessings I can add to the bank with this phase of my treatment, Aaron, sharing with my Nurses, Dr. K, Dr. I, the time with my Daughters and Wife, a visit from Rex, and just some sit down time with friends.