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. 

Friday's Diary

My tenured staff Nurses were quite different.  Nurse J was hovering and motherly not interested in anything I had to say.  She was on the night shift and taught the many student nurses on the floor.  She appeared to be a stern disciplinarian and likely one to play favorites.  Nurse M came on as my day nurse Friday.  Without the teaching approach she is a take no guff go by the rules gal.  I worked hard to satisfy both and understand their approach to nursing. 

There was a big difference.  For example, my IV’s were set in the back of my hands.  Due to there location they were easily bumped with normal activity.  An important part of my recovery is to be up and active.  I asked Nurse J if we could do something to protect them better because I was bumping up against stuff and it hurt.  Her response was simple, do not do it.  Nurse M came back with mesh fabric used for burn victims and fashioned glove to cover my hands.  It not only did the job making movement safer, it also had a stylish look about it.  Many folks prefer the conservative approach, but I want to move about as much as possible.  Staying stationary was not a reasonable option.  That night Nurse J noted the gloves and inquired about them.  I think she found it to be a good idea, although I am not sure she could admit it.  There two careers and experience show in their approach.  Both are pushers to make sure I do the physical part of recovery to the 110% level. 

The epidural left me with very little pain.  If I stressed the wound or had a bad gas pain it cut through and if it was too bad I had a button to push as much as once every 20 minutes.

Friday I got my laptop hooked up and e mail checked and processed, doing a little work as well. Moved to a private room I had much more space, more comfortable bed, more inviting surroundings and room for all the family and friends who have been there for me and coming to visit me.  Urologist in the morning and pain management in the afternoon,  student nurses with a year or two to go function as PCA’s (patient care assistants) and occasionally another med doctor.  No food ordered, so now the last time I had anything to eat was 5 days ago. 

The resident urologist, Dr. I, an outstanding clinician with a totally unurological bedside manner stopped by every day at the same time to check on my recovery.  This morning he told me the tube could come out of my nose today.  Later when I mentioned it to my nurse she said she would check.  The hose had repeatedly come disconnected from suction and since nothing was coming out was finally left disconnected.  When my nurse appeared later she advised me the resident said the hose had to remain in.  This was a female resident I am not sure I event met, however I felt another opinion was needed so I called Dr. K from my room.  Nurse D advised me at his office that the resident made that decision, and after some insistence agreed to have Dr. K call me.  Shortly there after two nurses appeared with smiles and pulled my hose.   We stopped by to check in on Aaron and he was on the heal. 

It happens that during my stay the medical order entry system was going digital.  As I have seen so often, the institution appears to have paid a pot load on the soft ware and then failed to train the Doctors first, putting the load on the nursing staff, undoubtedly at a cost to customer service.  I understood from my time with John G in the maintenance management software business and could be patient.  I am sure that it entered into the hose in the nose issue.  It seemed overall such a minor thing given the high standard of care I received every hour of the day. 

And Into The Bed

 I was exceedingly uncomfortable, learning from Jack the next day that my bed was improperly inflated and I was too drugged to complain and the Nurses missed it on their examinations.  Basically it put my lead butt in a bucket.  It was covered with an inflatable waffle.  Jack, who I practically had to talk a leg off to get a word out of him but found he had a lot to say, give me a sly look and said ‘be sure to take that home, that’s yours’, as he pumped it up.  As I jacked the bed and rolled about to get comfortable I did not want to run my TV, which was located in such a way to impact my roommate. 

At first with the curtain drawn between us I would call out to him without answer.  With the Daughters and Wife in the room we soon became rowdy.  Periodically the warnings on one or both of our IV pumps would go off, interrupting the melee.  Late in the evening I asked Aaron about pulling the curtain and we became introduced.  Aaron is 28, with spinal bifota a disease he was born with.  He is paralyzed.  He of course had to tell me twice, as I simply forgot that in our short time together repeatedly.  Both in bed hooked to tubes our handicaps never entered into that time.  He is here recovering from surgery for a pressure sore.  It is his 20^th surgery.  Twenty surgeries in 28 years of life was a little hard for me to comprehend.  I pondered it for a while.  He could only lay on his right side and stomach, his neck was killing him and he was tired of looking at the curtain so we became one room before night’s end, a night that found us up as much as asleep.  With my epidural and pain button I was chatty and it turns out Aaron was as well.  We shared family stories and those of our own and when the Girls came Thursday I introduced them, although they had already met while I was out of it Wednesday early evening.  His endurance and desire to go on was without question and it humbled me. He had an infectious smile, a gleam in his eye and was easily brought to a laugh.  Physical strength seems such a trivial and shallow pursuit in the face of such courage. 

In the dark of the morning Thursday Dr. K appeared at the foot of my bed.  Dressed as a teacher to the nines I never realized how sharp he looked, although Jennifer had been telling me all along.  He asked if I understood what we had talked about after surgery.  I said ‘you mean did I understand that I still have a bladder, you found a bladder cancer tumor on my colon and cut a section of colon out with it in and I need to talk to Dr. H’?  ‘Yes’ came his reply.  The day passed as I shared with my roommate and he shared with me.  Primary care came from my nurse and her assistant Jack.  Jack gave me my first hospital bath, helped me walk a couple of times. For the day both daughters were on hand and the conversation was lively and broad ranging.  Friday Dr. K asked if Dr. H had been in?  I said he had not, but I met with one of his residents.  He wanted to know what he told me.  I said he only asked questions.  ‘What kind of questions?’  The resident wanted to know the some of the same old stuff.  What else was wrong with me, how life was at home.  ‘Why are they asking that?’  ‘I have no idea, maybe the want to know how viable I am as a candidate.’  Dr. K gave me a puzzled look.  I have always felt he thinks I know more about my condition than I do.  It does give me some cause for concern that I do not.  I feel vulnerable, always sensing that those chart books carry some terrible message nobody really wants to tell me.  He left as abruptly as he came, and an hour later as the morning light broke through the window and the pain I had to use my button a couple of times the entire encounter seemed supernatural in a way. 

During the surgery, when Dr. K had me opened up and found the cancer had metastasized beyond what was expected he stopped and consulted with Dr. H and the two concurred that removing the bladder held no chance of a cure at this time.  Dr. K shows great faith in his team mates oncological skill and abilities.  Late in the evening they moved me to a private room.  Dr. K seemed concerned that I would be stressed in a room where others can eat.

Happy Halloween

Just Three Crazy Guys November 2010