Multiple languages, inadequate translations

During an office visit Monday morning, my PCP of 22 years and I got into a major argument.  I was adamant that I wanted to go to Europe and wanted no major surgery. I wanted his help in getting the urologists agreement along with prescriptions of meds to deal with any complications I might have.   

He did not like it that I was refusing the balloon dilation because of a 10% chance of emergency major surgery. He considered that surgery to be a “relatively simple treatment” consisting of an open abdominal cut and sew to repair internal plumbing, likening it to a leaking water pipe in one room which left unrepaired could make the entire house uninhabitable.

(Sidebar; Two to four days hospital stay and two to three months recovery.)

At one point we got on the subject of patient will vs. doctor decision and we both escalated.  I told him it was my body and I was the one to decide what was to be done.  He reminded me that he was responsible for not permitting me to make foolish decisions cutting my life short. I reminded him I had signed an advanced directive and POLST directing no heroic measures to save me.  Escalating further, I asserted my right to commit suicide…THEN he got emotional and told me that  under his care, he might overrule my advanced directive and further I should remember that suicide was illegal…

After countering, I walked.  He and Mary Ann continued talking. 

Around 4pm, he phoned to say all was arranged regarding an October 3 “simple” replacement of the right ureter stent in day surgery at Emanuel Hospital.

We “kissed and made up”.

Hoping to visit Europe…Choosing no major surgery

 (Sept. 24)

We are planning for a November European trip.   We hope to visit our granddaughter Helen in Vienna and other friends in Germany and France. Mary Ann & I are hoping to get a temporary respite from being so near to Cancerstan.  The October 3, scheduled day surgery with balloon dilation referred to in the Sept 16 blog has a 10% chance of complications.  Those complications could result in immediate major surgery.  Don’t think I want  that.  I am thinking of refusing that balloon dilation.    

Is this Planning?

Sometime before October 4, I will have "the privilege" of returning to Emanuel Hospital’s day surgery unit.  As forecast in my Sept. 9 post, one of my new guides, Dr. Michael Lavelle, intends to meet me there for a balloon dilatation of my right ureter.  If successful, the blockage where the ureter is attached to the stoma will be removed.  However, the historical success rate is 50%.

If his procedure is not a success, he will be recommending a return to the “knife man” for major surgery consisting of reconstruction of the ureter’s attachment to the stoma (aka “ the drain pipe”)

(In the meantime, it’s not clear to me what will happen to the beautiful 25 cm long turquoise stent which was inserted through my right flank and kidney on Sept. 2.  It  currently runs from the right kidney to the stoma and is slowly working its way out the stoma into the bag.)

With each new procedure, medicare costs increase

As does the uncertainty  

of continued high quality life.

I am not in denial

Denial is not for me!

 Apparently though, denial is a popular coping mechanism for many with cancer. 

I learned about the preferences for and experience with denial during yesterday’s Weekly Cancer Support Group.  Most all of the dozen or so who attend that weekly meeting want to live as long as possible and want continued medical interventions.  Even the three or four persons in stage 4 cancer want continued interventions. 

Apparently I am the only person in the entire group who is concerned first (and only) with high quality independent life.  Apparently I am the only one in conversations with a Palliative Care MD.    Monday, she and I had a good meeting.  I appreciated her honesty and empathy and we came to (a partial) understanding of the other’s desires and anticipated behavior…However, I do not yet know of her willingness to prescribe heavy pain meds if I choose not to accept particular invasive procedures or debilitating treatment. 

 Sidebar:

Monday, my Palliative Care Doc made very clear to me that her practice is governed by strict personal and professional guidelines/protocols. 

1.     Yes, she is available to me to advise on the pluses and minuses of specialist recommended treatments/interventions.  

2.     Yes, she will coordinate her work with my primary care doctor with whom we have worked for 20 years.

3.     Yes, she will prescribe meds for pain control.

4.     No, she will not prescribe the assisted suicide “cocktail” to a patient with treatable illness.  Nor will she prescribe such for depressed persons.

5.     Yes, she will prescribe the assisted suicide “cocktail” to persons who have a terminal illness with six months or less to live…

I want to live as long as I have a high quality independent life.   

I have been in cancerstan and could be returned there. 

I am not in denial.