21.3.11

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.     

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