Farewell To Palm

I respond and we adapt.  While I do have pain and events and so forth, it is not constant, it is every 1-3 hours.  In between life is normal by our ever changing standard.  Work, play and rest still go on, albeit at a slower pace.    

It is lunch time on Friday.  March 25 is the date.  Last night I retired my Palm Vx personal digital assistant.  Today I will remove the software and pack it up.  My first employer introduced me to keeping a calendar and keeping detailed files on suppliers, clients and qualified prospects.  Customer relationship records as they are called today, we called them data sheets then.  For many years I carried a Franklin Planner.  In fact I was manual well into the PDA era and likely still would be had it not been for winning a prize at the manufacturing show in Chicago, a Palm Vx.  Oh what a momentous day that was.  The box was in my desk chair.  It carried no markings.  Vanessa lurked near by.  I opened the box, about a foot square and dug into the plastic peanuts to find a box inches square and a document.  Oh my God, what have I done.  These dolls were hundreds of dollars at the time.  I did a quick review.  Did I swipe my AMEX card by mistake?  As it turned out I was the winner that day of the top prize. Now about 11 years old it holds two thousand ‘data’ sheets along with many programs and applications make it as relevant now as it was then.  Unfortunately Outlook encountered an error a couple of weeks ago out of the blue and it prevents the Palm from getting all the contact records.  Given my limited time left I decided it was best to retire this tool and use the laptop exclusively from here on. 

We went to the funeral home today, picked up the menu and price list and got questions answered.  It was very business like, kind of like buying a car.  Price sheets and sales agreements, discounts for early pay, the mystique surrounding funeral homes and directors torn away by the economic realties.  Dying is a for profit business.   

This afternoon I worked steady getting to catch up on conversations overdue and follow ups that luckily were there.  A significant dent in the pile.  Chili for dinner and my night was mediocre finally settling in about 3A. 

Saturday I worked on cleaning up the laptop and reducing the size of my regions showing the most swelling.  In other words, mess around with the computer and play with yourself.  I put all that aside in the afternoon with Renee visiting and then J and J and M came over with pizza and beer and we enjoyed a very exciting time as Butler won in a shoot out and goes on to be part of the Final 4. 

Now Sunday and clearly I am not improving in the edema area.  Reflecting in the afternoon how fortunate I am given my condition.  My dear Vanessa is my ever present angel.  Her love and devotion humble me beyond words.  I wish I could spare her my agony when I am in it for I know she pains when I suffer but I cannot.  I am not that strong.  I would never begrudge her from fleeing the premises at any point in time to escape my moaning and groaning.  My Sister brought me a chocolate cake and her husband to visit Gerald and I this afternoon.  It was like the loopy quartet.  Another day of spectacular basket ball filled out the afternoon.  I wore bike shorts all day with the saddle on the inside to soften things up.  Can’t bend at the middle and cannot bend my legs up at this time so I need help with all the basics, including putting my pants on.  I hate the helplessness. 

The animal's Power

Decision time soon looms.  It seems like yesterday that I was well, walking through the zoo in Chicago, playing golf with the Hays family and my Brother, those walks in the park and sleeping in bed with my Wife.  Of course I was not well then, but I was unaware.  I struggle to work every day.  Last week I managed about 3 days total of productivity and a lot of time struggling.  Now with each passing day it becomes apparent and clear, yet each day I start and try to produce something.  Is today the day for that big order or that final call? 

Lunch time has come, it is March 24.  While taking the step from treatment to hospice was emotionally difficult, I am glad we did it.  I split my office moving the laptop to the family room where I shall conduct my business from a bed with 3 way incline and lift and a fabulous air mattress that continuously somehow moves about and assures my comfort for hours in bed.  I prescribed the bed stay as a step to reducing the swelling and  restore my ability to walk and make calls.  In the interim I have the luxury of technology.  I can light up two printers if need be from where I sit.  I got a new phone and once again am hands free and I am excited at the prospects presently available.  Should I be so interested in work in my last days?  There is no right or wrong in my eyes now.  I look to fill my days with things I enjoy within the envelope of love and support that Vanessa has so carefully placed me.  I enjoy using my noggin. 

Since mid week last my mobility has gone away.  Walking more than a hundred feet is

impossible and it is turtle slow.  My trunk is shaped like Quagmire’s head. Both legs are trunks with fluid leaking here and there.  My stones are somewhere in a ball bag the size of a grapefruit that feels like someone is kicking it every few minutes with a redwing.  The bed stay with appropriate elevation and doubling up on the manual lymph draining regimen is prescribed to bring it under control.  Now in day two I note some improvement.  Urinating has improved. I now take 6 laxative tablets a day and a liquid once a day to keep my pipes open.  It is working.  This eliminates straining for number twos which in turn reduces bleeding from the tumor into the bladder.  For over two weeks I have been bleeding and passing clots.  In fact, I had to urinate regularly and hope I passed a very painful clot or two every time.  If I missed a time the next time the clot was twice as big.  Oh the animal so cruel in it’s delivery.  Relax so you can pee, almmmmmmm, almmmmmmm.  Find the head in the edema.  Relax and release, ahhhhhhhhhhh, pass a clot, oh, oh, my God, x??!!####, followed by blood.  Sometimes the bathroom fills with the smell of fresh blood, a sickening smell I noted.  Drinking less fluid makes it worse, drinking more makes it more frequent.  Now in my second day most of the bleeding has stopped, so much so the clots are gone. My interval grows longer as well, now sometimes over two hours.  While still a task, this process also has improved from earlier in the week. 

With each passing day the reality continues to sink in.  The bleeding comes and goes.  I have always lived in my own world independent of the emotions and events going on around me.  Often teased for all the voices in my head that occasionally raise their heads the reality is just that.  I have always had a lot of company even alone.  So it has been easy to compartmentalize my situation, placing the animal in a subservient position to my normal life.  Even hospice at the outset seemed like just another step in the process.  In just a few days the animal demonstrates it’s awesome power. 

Last Stop Hospice At Last

And overnight the animal worked.  I got out of the shower and noted that my normally robust figure was wrong.  On second look it was clear I was bloated with fluid.  In my office I watched as my foot swelled with fluid.  Small red lesions on my right leg were soon leaking water.  Once more to Dr. H, the ologist where I had figured we would go on with the chemo to work on some symptoms but the out of control fluid issue I was sure would changed that plan.  I was right.

‘Mr. Courtney’ came the familiar greeting.  ‘Dr H’ with hand extended came my standard reply.  ‘How are you doing?’  ‘Not so good’  ‘At last’ Vanessa blurted, hearing me admit to the Dr. for the first time that I did not feel good.  He gave me a cursory exam, discussed the lymphedema and then said ‘I’m going to be straight with you.  Chemo will not work and I do not recommend we go on with it, but if you want to we can.’  I got lost in the discussion for a bit.  Vanessa asked him about any benefit to it, like relieving pain and symptoms as he reminded her that the risk of infection and other complication is very high.  ‘If we do I want to know what the end game will be.  Things can happen very fast.’  The doctor’s concern was palpable.  I agreed we should get enrolled in hospice.  ‘What’s my time line?’  ‘Two to six months’, and with that came the end of my treatment at the cancer center.  From here on a cure is not considered or attempted.  I did not realize my ologist was breaking up with me until a couple of days later when Stephanie called from the hospice service to set up an appointment.  As she explained the service I understood why Dr. H said his appointment was optional but he wanted to make sure I was getting the best care.  He was saying he still cared as much as he could.  They did the best I think possible, bought me a great summer, counseled me wisely and responsibly and treated me with the upmost care.  In all it appears the cost was around 80 grand and Dr. E’s initial diagnosis was correct. 

So what a surprise when the hospice nurses showed up and assured me Dr. H remains my physician prescribing and otherwise.  Even though he still wears his class ring I find him reassuring.  Hospice requires a statement by the attending bones that life expectancy is less than 6 months.  My goal will be to prove this terribly wrong while taking advantage of all hospice has to offer for my creature comfort and pain control.  Holding the record for longest in hospice would be ok with me. I enrolled on March 18.  At one time I never thought I would but I signed the DNR order and living will to assure extraordinary means would not be employed to keep me a vegetable at some future time.

They came in separate cars on a gray day in March.  They carried papers and pouches, wore the RN nameplate.  They sat together awkwardly on the love seat, being somewhat more in total that the design of the seat.  It appeared any butt to butt contact would have a dire consequence, perhaps spontaneous ignition, I am not sure, only that the sofa drew them to middle ground and they fidgeted to avoid it.  They were playing the rolls similar to ones I have played many times.  A two person team, one was the project manager, the other a service tech or product specialist with closing in mind.   As one shared what hospice was, and what was and was not included, the other watched, chimed in occasionally and expanded on a statement or two.  Both were busy writing on their own paper piles answers I had and statements I had uttered and who knows what else.  I watched and listened and did not hear anything new. These ladies work with death every day.  It did not say sales call, it did not feel sales call but it was a sales call, and  in the end, with the assurance I could continue to work,  I signed on the dotted line officially transferring my care to this group of nurses.     

The Ubiquitous Bladder - An Observation

It’s Not Mine, It’s Urine.  I have to laugh.  I remember when I was first diagnosed.  I had never heard of bladder cancer.  An unknown animal I never knew existed would try to kill me.  The word bladder kind of has a shudder factor to it for me, like the word alone gets eeeeeeehhhhbwhuuuuuuu out of me.  Before the animal I had an iron bladder, developed out of necessity as I would drive 80 or 90 thousand miles a year.  When travelling with rookies and stopping every hour or hour and a half, even in side ditches I certainly felt superior.  ‘You don’t have to?’  ‘No, I have an iron bladder.’  How many times I could say that over the years.  A couple of beers and my name in the snow, no mike either, Michael thank you.  Sometimes I could even eek out the C on a restart.  Memory retention is one thing, but for driving nothing like some old fashion urine retention to get you there and home faster.  We went to Colorado in 1976 and Vanessa was about 6 months pregnant.  We stopped every 45 minutes there and back, regular as clockwork and regardless of where we were.  It is a fond memory often recalled.  Such is my life now for a year.  My interval runs 1 to 2 hours.  No spelling my name now, lucky to squeeze out the M.  Where I used to stand, make horse noises and boil the water in the bowl I now pathetically sit and make a noise somewhat similar to wind chimes on a timid day.  So bladders are part of our life, an unspoken but vital part.  I imagined all kinds of horrors when I was first diagnosed and indeed some have come true.  Certainly mine has become the home of the animal whose presence continues to grow and prosper at my expense. 

When I found out and decided to share my fate with coworkers and friends I knew it would not be enough to just say I had c.  So I published this journal for those who want all the details.  The B word could just not be left out of the equation.  Yuck, or yuk, or eeyuk, however you want to spell it.  To my delight the word I thought would be so unacceptable is quite the opposite.  It took the affliction for me to notice all the products made for the bladder and sold on television.  Why there is an entire industry and no doubt thousands employed toiling away to produce that which sooths, heals, seals, controls and cleans up after.  All for the little old bladder.  Let’s face it the liver doesn’t have it near that good.  Still, despite it’s celebrity status products for the bladder are often advertised as ‘shipped in a brown paper wrapping’.  This puts these products on the same plane as porn, or my college degree, both of which are mailed in brown paper (of course I have no direct knowledge of the former).  So the bladder is still socially unacceptable at the end of the day. 

Another Comeback In Process

And zing, another week has passed.  And zing, another nail section whizzes by hits a wall,lamp,shelf,chair,person,unameit.  If Vanessa knew she would probably at least wound me.  Whatever the cause the tensile strength of my fingernails is equivalent to some metal alloys.  Trimming requires of me closing doors , proper orientation, use of safety glasses and hat and pull over top (no pockets).  The clippers are sharp and easy for me to hold.  Zingclickticktick and another part of my DNA hits somewhere to the left.  The week was difficult going in but Vanessa worked with me to get my medication ahead of the pain.  Friday she commented after the long day how busy I was all day.  It was true.  Zing, tap against the door, good thing I closed it. 

This week started with the pain on top and ended with my practice of taking my pain medicine on schedule and not waiting for the signs of pain to arrive.  The result has been rest, productivity, much less moaning and groaning and regained ability to motor around.  It requires a morphine dose every day.  I am now in my forth day of this regimen and enjoying the comfort. 

Once again I am starting over on the PT stuff.  There for a short period I started to make progress but all of that ended.  Now I am building up again.  Walking is a critical part of my LMP (lymphmanagementprogram), I love TLA’s ( threeletteracronyms).  Making the leg movements to motor about is like running the pumps.  To get and stay on top it is part of the daily regimen no matter what time it is done during the day.  As I have been able to at various hours I have bundled up to walk up the road.  Always mindful that what ever distance I cover going up I must cover going back I have extended my distance from 200 to 1000 feet.  Today I am confident I can do at least 1500.  I collapse back in my broken down chair.  I am talking feet I can walk with manageable pain.  Feet to my threshold seems so miniscule yet 1000 feet to me is as great a goal I think as running 5 miles in the time goal is to my Daughters, with a lot fewer calories involved in the transaction. 

Jocelyn shared this with me;

What Cancer Cannot Do
Cancer is so limited
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit.

The Author is correct in his or her hypothesis.  All of the things listed are beyond the ability of the animal.  Only a person can do these things.  In my estimation you are chicken if you use the C card to accomplish anything on this list.  Thinking about it this is the list of soap opera plot lines.  Every one has one or more characters with the animal occasionally.  The victim is fighting one of the above moral dilemmas.  I believe it is a lot better not to carry such baggage along with the burden of the battle and the animal.