Flying Away

Assuming the kidney stent behaves after it is "adjusted" by Dr. Bloch, on January 17, we are making arrangements to fly some 6000 miles to get away from "cancerstan".
 
Our tentative plans:
 First see Seth and Fran in Boston.
A short visit to one of 2012's 10 top tourist destinations --Reykjavik
Vienna, to be with Helen as tour guide
Berlin, with Helen as fellow tourist
Weimar, to see the "heart of Germany" and spend some time  with the wonderful LaRosee family
And, finally on to Switzerland for a day or two with our friends of 40 years, Marc & Catherine Fermont


fyi While I do not intend to return to "cancerstan", it's not in my control

Out of Cancerstan, for now

Yesterday’s, six month, CT scan showed no evidence of cancer! 

The kidney stent and  nephrostomy tube are in the correct location, and both kidneys are functioning as appropriate.  The drain on my back has been turned off.

And, I’m back to only one bag, the one hanging on my abdomen, covering the stoma. 
If all goes well, on January 17, the back drain comes out and perhaps the stent will also be removed.

So the European trip is back on the agenda for sometime in late winter or early spring.  


Hopefully, cancerstan is behind me.  

Two Bags, for now

 Nov. 23, 2011

Two Bags, for now

I lied in that last post…no CT scan.   But I do now have two plastic bags.  I have had no CT scan since September.  I did have a “loopogram” on Nov. 10…if you are interested in more info on that test see http://www.unc.org/publications/1/UNC_Pipeline_2001FINAL.pdf

Since the loopogram showed that the right ureter looked like a string—BAD! while  left ureter was like a small pipe ( the diameter of a sink faucet feed pipe about ¼ inch)—GOOD!.  My new urologist suggested that an interventional radiologist do a “minor procedure” of placing a stent through my right flank into the kidney and ureter…the stent has a have a plastic collar where the blockage was.  Along with the stent, I now have a drain tube coming out the right flank and attached to the new and second bag.   And for now, I am now emptying each of the bags  when it filled with a cup or two of urine (and for the first several days some  blood for added color). 

 In contrast to the first procedure where the drain tube remained in place 4 days (See earlier post “two additional guides”) this one is to remain for 6 to 8 weeks. (If I can stand it.)

Oh yes, I am very pleased to report that my new PCP  (Dr. Kelly Scott) and I  seem to have a good understanding of each other and my overriding desire to maintain quality of life as long as feasible.

 (Sidebar: For anyone over 60 I highly recommend the recently published book “Rethinking Aging; Growing Old and Living Well in an over treated Society” by Nortin M. Hadler, MD.   I like it because the author provides empirical evidence that medical interventions for us “old farts” often result in lower quality of life AND  much more pain and suffering. 

“Everyone who is sixty already has significant atherosclerosis.  By seventy it is impressive. Most who are sixty are harboring cancer, and nearly all who are seventy are harboring cancer.  Nearly all who die in their ninth decade do so with many potentially lethal diseases, not from most of those diseases. It makes no sense to cure the diseases one will die with in the ninth decade and little sense to cure the diseases that one will die from in the ninth decade if another is to take its place in short order.”  (Page 175)

I remain adamant: no chemo and no major interventions. 

Do I get another CT scan?  How long do  I keep the new drain tube and the second bag? 

New Guides and More

I believe I am still out of cancerstan.  

This Thursday I get another CT Scan of the abdomen. 

However, recent conversations with my guides have brought to light irreconcilable differences (ID). 

Those ID result from my desire to avoid additional major medical interventions.  

As a result of the conversations:

I have decided to replace my urologist;

 and

my Primary Care Physician (PCP) guide has asked me to find a new PCP guide.  

It feels a lot like a divorce. Sad yet necessary.  

Sidebar:

Quote from my PCP's letter of Oct. 31

"The physician/patient relationship is one that depends on mutual trust.  Because that no long exists in our relationship, I think you 'd be better served by finding another physician where you can establish the relationship you deserve..."

I will see the former this Friday and the new PCP Monday Nov. 13. 

Based on their interpretations and advice, Mary Ann and I hope to decide on dates for the European trip. 

Sidebar:

I have three reasons to be skeptical of and likely to reject major medical interventions:

1.     I am old.  I was born in 1934 and one of these days I am going to die…I do not want major medical interventions, 

        which could result in 2 or 3 months of recovery or major side effects effecting quality of life.  Further more, I do not want to be kept alive in order to have a higher probability of dying from Alzheimer’s or a stroke…   

       both of which would result in being dependent and costly.

2.     Taxpayers have already spent over $40,000 on my care.  

       Major operations cost over $15k and chemo costs $2k to $10 per shot. I am not worth another $20k in medical treatment.   I and my fellow “old farts” are hogging Medicare and medicaid funds.     

      Too many children and young adults are unable to obtain the medical care they need partially because of the public policy    of taking care of the elderly first.  In my view at age 77, I am not worth as much as a younger person. 

3.     Major medical interventions often decrease the quality of life…more years of low quality life, makes no sense to me. 

Some History

As you know by now, I have chosen to forgo some recommended treatments.

My case has been written up in an electronic newsletter, "The Lund Report".  

you can google 

http://www.lundreport.org/

then search for "quality of life"

alternatively you might load onto your browser  the long URL below

 for the direct link

http://www.lundreport.org/resource/cancer_patient_believes_quality_of_life_should_come_before_treatment

In Limbo

limbo |ˈlimbō|

noun

• An uncertain period of awaiting a decision or resolution; an intermediate state or condition: the fate of the Contras is now in limbo.

There will be no November trip to Europe.

Last Monday, October 3, Dr. Lavelle of the Northwest Urological Clinic replaced the stent in my right ureter.   As I had requested, it was only a stent replacement that took about 30minutes…  I was at the day surgery unit less than four hours.  Certainly not major surgery.

By Thursday, the curly cue end of the newly installed white stent was poking out of my stoma…Not to worry as I had experienced the same thing with the first stent in mid September.  But a couple of hours later, another four or five inches were visible through the bag and so I phoned my urological guide.  He was unavailable but his medical assistant suggested perhaps I could just cut it off. “With what” I asked. 

She didn’t know.  She backtracked and then suggested that   I should have an x-ray Friday morning afterwards come see the urological surgeon who installed it.  That I did.  He looked at it a short time and suggested it would probably entirely work itself out over the next several hours…

It did come all the out and now that slightly used 18 inch white stent, with curly “pig tail” ends, remains in the current bag and is available through Wednesday at a VERY LOW price.  J 

This morning at seven am, the ultra sound tech surveyed my kidneys, the radiologist wrote up his observations, three hours later Dr. Pitre suggested six weeks of watchful waiting and (because of potential kidney infections?) that we postpone our proposed European trip until early next year. 

The good news is there is still NO EVIDENCE of any cancer. 

So, maybe we’ll be in Europe early in 2012. 

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”.