Lamenting The Fat Files

‘I see smoking is….’ she said.  ‘Yes, smoking is a primary cause’, I finished.  ‘Well, I was looking at your history and then one of the other nurses pointed it out.  I have seen a lot of neoostomies, urostomies and ostimies and I never knew that.’  I did not reply.   

We went to Simon yesterday for my appointment at the pre-operative medical clinic aka the PMC.  In spite of all the technology the fear of lawsuits adds significantly to the cost of care.  Here with all the information at her disposal a very talented nurse had to spend an hour building my file from scratch in hard copy.  This included getting a fax from a few floors above of 8 pages, talk about killing trees.  And let’s not forget that due to different screen views the state of the art cancer center has to use a fax to transmit patient information from one office to the other in the same building.  So I get another fat file.  Fat files on me exist now here, in the basement of the old hospital, at the north hospital, at the north medical center, at the Anderson hospital and at Dr. Steve’s office, as well as Dr. E and Dr. J’s offices.  I cannot imagine suing a doctor or nurse for care given if it failed unless they clearly were drunk, stoned or serial killers who somehow made it through all of medical school to rise to the top of their profession.  Anytime you get sick you are faced with new risks, no matter what.  Risks increase when you have to seek medical care, and even further when you are under treatment.  Finally the best way to get sick is to land in the hospital, and if you do you’re first and foremost goal is to do as your told, get better and get the hell out of Dodge before you get some infection, virus, poison or medical error laid on you. 

Today we used 3 gallons of gasoline at 2.85 per gallon.  We interacted with a sign in clerk, a receptionist, and two nurses.  We paid 4.25 to park.  We arrived at 2:40P, early, and left at 5:03P, all for a urine sample and to draw blood on my part, and for the nurse to build the file on her part.  I could have done my part in 20 minutes at any lab and faxed that in.  Perhaps we could use a little tort reform so she could dedicate her very expensive hour to patient and not paperwork needs. 

And oh by the way, thanks to kind and experience Nurse for reminding me that I was there most likely because I was a smoker.  Oh yeah, I must have forgotten that.

My Battleship A Daughters Love

Looking back Fathers Day seems a lifetime ago.  My summer was filled with many good times and new experiences.  Every weekend was a treat, my Wife a joy and my Daughter's close at hand.  Jocelyn gave me a replica of a famous guided missle cruiser, knowing my love of toys, along with this note. 
She must of been thinking I was considering giving up the fight and wanted to make sure I understood what was at stake.  Rex told me he never understood how someone like me with so much to lose and leave could go for years without seeing a doctor for regular exams.  Hmmmmmm, could it be shameful self centernesss on my part, fear that something might really be wrong and I would end up as I am?  A healthy dose of that and more.  Knowing how I deserve what the Good Lord has bestowed upon me is above my paygrade. 

Spin Tarry Thrust

‘Have you made your appointment yet?’ she asked.  I was responding to her v mail.  I need to because she can get lost or sometimes has a need not expressed.  This time it was mind racing to see how we fit it all in.  ‘No, that’s on the top of my pile.  I thought we should coordinate on the time.’  ‘There’s no need to coordinate’ she said .  ‘Well’ I drawled, ‘I just figured you would want to be there for whatever it is we are doing’.  ‘It’ a preoperative check you have to do’ came her curt reply.  I could sense the tension building in the cell connection almost as if the microwave frequencies were reaching a point of harmonics that might disrupt this dimension.  ‘So you are telling me I should not give regard to your calendar and set the appointment as I see fit?’  I ducked my head a tad.  ‘I’m telling you’, (Is that teeth gritting I am sensing?) ‘to make the appointment then I will set up my calendar, but it needs to be done soon.’   ‘OK’ I replied ‘rest of this week is out’.  ‘Anytime next week’ she said.  I moved slowly across the keyboard, scanning my outlook calendar and checking the various post its, index cards, scratch notes about my desk in various states of dishevelment.  About to commit she says from a distance ‘But not next Tuesday.’  Hmmmm, make it any day, except.  After some out loud bantering due to the fact we were at our workstations a hall and two doorways apart, we will shoot for Monday or Wednesday.  I fired an e mail requesting times available.  I hope the challenge never ceases as long as I am breathing.  Touche’.

The calendar is filling for the next weeks.  Chicago, catch up with my Dear Aunts, Homecoming, work stuff and transferring to those who must pick up my work load as well.  I hope I have a lot to turn over as I intend to go full tilt until I have to quit for a while. Spend as much time as I can now with my closest of family as we brace for the inevitable long days.  Jocelyn will bear the burden by virtue of her willingness and geographic closeness.  Vanessa put her battle gear on day one and faces each step of the process as another battle in the war.  Fortunately for her sanity and mine she keeps me in check. 

I am back on my training regimen, but still struggle with the voracious appetite.  I likely will have to start keeping a log.   

Deciding On The Surgery

Monday and back at work.  Gave the office the word today on my surgery date and plans.  No questions just appreciation on being kept in the loop was the universal response.  I continue to wonder at the people that actually care about me.  A marvelous miracle and blessing each and every one is.  Through my life I have employee and employer but not so much a coworker.  Mostly alone, the majority of time getting to or coming from interrupted by brief encounters with clients and fellow employees the job leaves me on my own for the most part.  How wonderful now at my age to discover the caring and concern the team has for me.  

My cousin now undergoing prep for a stem cell transplant noted she is just now realizing how sick she is.  I understand her sentiment.  Although I have had a surgery, hospitalization, intense physical therapy, allergic reactions to meds, a full round of chemo and now have a permanent handicap from the cancer preparing for surgery is still a hard reality to face.  It means I really am sick.  Frankly I never thought I would be a candidate or have even a remote chance of a cure, yet here I am, the answer to all the prayers said for me. 

Surgery means urinary diversion, but it also means a 20-30% chance of getting the cancer out of me, the only chance I have.  I have decided that my first choice is the neobladder.  This is the most complex and difficult surgery choice I have.  It means I am banking on the 20 year goal for remaining life, not the 5.  I confirmed this morning in another hard step forward.  I did a lot of soul searching on this and found much help and solace in the journals posted on the BCAN web site.  I am looking forward to getting it behind me and hope to be back in good order on or about Christmas.  Like a runaway train, there is no stopping me now. 

Friday Night Date Night

Last night I had a date with the wife, circa 1972 with updates.  Instead of Maynerds it was Teds.  Instead of Fred and Fonda it was Son and Daughter, instead of a 16 dollar tab it was a hundred dollar tab, followed by walking two malls, albeit open air up scale.  Smelling the clothing stores reminded me of downtown Elwood shopping on Friday night with Mom leading and Dad and Paul and me in tow.  The smell of Falveys was in the air for true.  At my age, after walking two malls and prior to that killing the buffalo and a greasy cheeseburger with onions and cordobian bacon and sinfully real cheese with a gob of mayo (and I think my problem is holding fluids, give me a break) on top of bison nachos and two delicious margaritas and copious amounts of ice water.  I ate like Henry the 8^th.  It will take from now until Surgery to live it down.  I likely weigh in at 215, highest ever in my life and the operation takes the muscle weight but leaves the fat.  Fabulous.  Today is Day 2 of training.  I would say I have gotten off to an ignominious start. 

Saying Goodbye And The Importance Of Passing To Passing.

Today was a turn around day for me.  Getting a letter from SD on his present condition helped me to remember how blessed I am at present.  I find it more pressing to pray for him than me.  I said goodbye to Bonnie tonight.  She had been feeling low for a while and apparently got pretty weak and they found her at stage 4 and she is in hospice care, receiving visitors in her bedroom.  She rose to see us and the family left us with her for a while.  My breakdown at church now so long ago touched her heart I think.  She always wanted to know if I had any pain.  She told me she had no pain.  I think Bonnie is 86.   

I think my Mom died in pain, her last few days curled prenatal.  Knowing what I know now I wonder if we gave her enough laxative knowing how long I suffered taking pain pills for the pain of intestinal blockage brought on by the pain pills I was taking..   I know now the true meaning of shits and giggles I guess.

Mom and I never said goodbye in parting, just goodnight, as was her tradition for as long as I can remember.  She would say good night in the morning to beat saying goodbye.  Goodbye she said was too final.

Bonnie is planning to tie up with her life mate very soon.  She is gathering strength to play piano in the church one last time.  I hope she can, but I don’t think I could be there for it.  Such a trigger I fear would reduce me to a blubbering mass.  God bless Bonnie, a good person that in her life touched many.  You can see her pay it forward all over southern Madison County if you look (hidden blessings you know).

The Prerequisite Emotional Rollercoaster

It’s Monday evening, surgery is scheduled, the wheels are in motion, the diversion is selected and I have 4 weeks to prepare.  Or is the diversion selected?  I still have some thinking to do on that.  I still have some research to do on that.  I am sure Nurse E gets a lot of this since they do so many every day/week/month.  Again, thanks Bill Gates for Windows which is now working only in safe mode on my power workstation for some unknown reason.  I understand Apples do not have the problems so thanks Steve Jobs for making them so much more expensive so that I cannot afford to go that way and keep up with the ever changing technology that dictates new hardware every 3 years.  I digress again.  It is a mental valve to redirect me away from thinking about my immediate future.  Mental preparation must begin, but I think tonight I will allow myself the luxury of escape by sleep drug induced if necessary. 

‘I think I would rather die than go through it’ I can just hear T say.  Well I just don’t think we get those choices on purpose.  I can’t wait for another round of hospital food.

Tuesday came and went in a fog of depression.  I just allowed myself to wallow in it for a day.  Wednesday is here and I am hard at it playing make up ball for the slow start yesterday.  Was not successful on some rfq’s I put a lot of time in and that is discouraging, but then I can procrastinate until the cows come home and it will not move me forward or make me feel better.  Inger noticed this morning during our session and told me to ‘suck it up buddy’, sounding very much like my Jennifer.  So I did and so I am. 

I seem to be somewhat swollen, or maybe I am just plain fat, most likely the latter.  Still not spiritually up to the gym, maybe tomorrow.  No luck yet on my media machine, which I am trying to save from Trojan hell and oblivion.  The time and effort put forth with my work the past couple of weeks will not make gravy right now but will in the future.  Working with big mechanicals has a learning curve.  I am getting there.  We are trimmed to serve them well. 

OK, must just be fat.  Here it is the last day of September.  I feel great after a good work day and lots of walking.  I keep forgetting to take my stockings off, as it is now approaching midnight.  Through the day they caused me some momentary discomfort but adjustments made kept up with it.  Note to self, get stockings with closed toes in the future.  

I have concluded that my surgical decisions are a bet of sorts.  I must decide if I expect to live 5 years or less or 20 years as Vanessa expects.  I am heavily leaning to the 20 years.

So if given a choice of what I would prefer over a longer haul the neobladder is a slam dunk and the surgery my surgeon prefers and does the most of.  So when you go to a steak house order steak, don’t order fish.  I will sleep on it.   Of course we will not know what can be done until I am layed open.  Such is the way it is with most surgeries I think. 

Broke down, bought Norton, fixed my computer.  I hate computers.