The Last Of March

We went out for dinner last night and brought home a couple of meals in ‘to go’ boxes.  I wonder how I ever got around a full serving of anything. Tuesday started on the rough side.  I worked on some follow up letters and tried running down a few.  At best I managed about a half day of work.  In my defense the incoming was intense.  Joyce my Nurse came in for her first weekly visit.  I am bumping her back to two times a week until we get a complete handle on my symptoms.  We also entertained Killer and Sharon and they us, friends and always fun.  On top of that a chaplain stopped by.  She ended up staying about two hours as she patiently worked our story out.  She found inspiring many things we take for granted.  I understand in many cases the animal drives a couple apart.  It has driven us together.  Vanessa took on the battle just as if she were me.  I told the chaplain about Inger and the daily devotions, that Vanessa and I agreed to smile whenever we looked at each other, about our Families and our Family. She read my book ‘The Gooses of Madison County’ and we never stopped entertaining her and answering her questions.  After she left we laughed at the role reversal as it seemed we counseled her more than she us.  In this home so full of blessings it can become overwhelming. 

Tuesday night I experienced intense ball bag swelling.  It happened suddenly, painfully swelling to twice the size.  OMG, what now?  I set up arranging pillows for the maximum elevation, doubled up on the pain meds and began therapy around 8 P.  By 3 A my condition had subsided significantly.  I did not accomplish much Wednesday.  Somewhat weakened by Tuesday and the pain killers I think.  Now 5 A Thursday and the day looks promising as I write this.  While uncomfortable I manned the office today and stayed at my work station for a good part of it. 

Friday and it is April Fools Day.  I called Bruce and told him it was the last day of the month.  He believed me.  I now find that even the largest of sweat shirts I have are tight.  My profile is so distorted as to make others uncomfortable looking at it.  I found one hoody to wear while we have company tonight.  And with the night we enjoyed the company of  Mike B with Chris and the Hays family and a culinary delight we all got to share, Mike B’s  ribs.  Wow, it might be a full day before I get over it, they were really good. 

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. 

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.     

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).