Continuing Recovery?

Continuing Recovery?  (August 26, 2011)

August 21 was a bad day and the days since have also been bad.  This week chills, fevers, total body aches, and NO Energy have defined “me”.

Over the previous 12 weeks, my guides had been telling me that recovery was progressing, quality of life was improving and soon we would distance ourselves from Cancerstan.  I was beginning to believe them, even though three months aafter the knife man took me out of cancerstan I still had limited energy and could not sit comfortably longer than 30 minutes… However, I could walk every day including a once weekly  round trip of a 4.5 mile walk to the local cancer survivors’ group.  Then, last week, I took in 2 yoga sessions.  (Not surprisingly, I completed only half the poses, but that was ok with me.)

Then, mid day Sunday began a week of hell!  An early Monday morning  call to our long term PCP of 20 years.  He  suspected a kidney infection as Radical Cystectomies often have the complication of kidney infections.  He asked for a urine sample and  immediately started me on CIPRO (a broad spectrum antibiotic).  Lab results came back Tuesday while I continued in near delirium indicating yep! Kidney infection caused by not one but two different bugs.

(SIDEBAR: Had two dreams last night

Dream 1.  I was lost in a strange city helping a stranger move heavy concrete blocks…Sisyphus?

Dream 2 Lost in strange city, help two friends escape in the small plane we constructed.  They crashed into a utility wire shorty after takeoff, somehow survived and returned to our little compound.)

Yes, things are better, I left the house for the first time since Sunday and was able to walk, slowly, for 10 minutes until the exhaustion and pain in my back forced me back to bed. 

 Cipro is to be continued for ten days total and the guides expect all will be well in due time.

In the larger scale of things

YES, please drink a toast to my companion of over 54 years for her extraordinary help and support in this difficult place…

Today’s jeopardy clue is

“Not a high quality life” 

And one answer is

What is a kidney infection”?

A NEW GUIDE

The knife man is out of my life for now.  His replacement, a fully qualified urological surgeon and a colleague in the same group of urologists was a good listener and easy to talk with.  During our first meeting on August 11, we agreed that the surgeons’ view of a complete cystectomy is very different from the patient’s.  Urological surgeons do many many prostate operations along with a few complete cystectomies while the patient experiences one unanticipated surgery.  So, my several questions were easily answered.  Then we had a good discussion about that May 24 surgery from which the new guide says I am recovering as anticipated. 

I did call attention to printed instructions I received shortly after the surgery as well as medical records that seemed to have some errors.  Those matters will be discussed at the next monthly meeting of colleagues.

(SIDEBAR: The apparently erroneous material was in three documents.

 1. A before surgery imaging request for multiple tests when all I needed was a chest x-ray 

2. A two-page instruction sheet from the surgeon's office that included erroneous instructions, which could have resulted in harm.

3. (Unsigned) report of the May 24 surgery, there was no mention of the spinal anesthesia…perhaps the result of using a template.  I suspect there are other errors that could result in harm to patients.) 

That new guide and I have an appointment Sept 8 and expect to meet every three months for the next year or two.  A week or so prior to each meeting he will request a CT scan and blood tests which he will use along with his own examination.  He will then let me know whether or not I have returned to cancerstan. 

(SIDEBAR: my PCP, a guide of 20 years, had arranged our first meeting (last Monday).  Shortly after that appointment was scheduled I received a call from one of the Knife Man’s worker bees who gave me a new offer: the choice of meeting with that replacement or yet another meeting with the Knife Man’s female physician’s assistant who seemed to not to understand my condition, did not give satisfactory answers to my questions and, for the previous six weeks had refused to meet with me let alone take my phone calls…. Choice was easy I chose the new guide.

I did find out that Medicare pays the surgeon a lump sum for the surgery and 90 days of post op follow-up.  Most likely, my choice resulted in the knife man having no more responsibility to follow-up. His costs are less as I had no more appointments with the knife man’s people and he doesn’t have to see me again.

Even though I am forgoing chemo, this Wednesday I see my oncologist.  

Two opinions of my PCP

“Naturopaths are quacks.”

“Palliative Care Docs are of little help to patients such as me but they are good for sitting in committee meetings.”

Musings about the “Knife Man” (August 3, 2011)

Since May 26 or 27 (two or three days after surgery-time and again I have tried to have another chat with the “knife man” and have failed…Early in July, his scheduler informed me that he directed that no one in his office was to talk to me.  I would have to talk with him…and that was good as I had been hoping to meet with him since leaving cancerstan…However he was unavailable the first week in July and on vacation the next two weeks.  The third week, of July I tried again and sent an email with my most important questions.  I was told that he would contact me. 

(Yes, I do have email in this neighboring locale close to cancerstan.)

1. I have decided no Chemo.  Comment?

2. I still have sore testicles and apparent fluid retention in lower abdomen as well as difficulty sitting for any length of time due to a feeling that I am sitting on my guts along with pain between my scrotum and anus. These conditions are worsened by “extreme” activity (walking more than 2.0 miles. Pain is ameliorated with ice & bed rest.  These discomforts, unlike most others, are not getting better.   Diagnosis and his recommendations?

3. Should I be concerned about burning sensation that accompanies my bowel movements?

 No contact has been made…(My guide of 20 years, the guide I first connected with when I moved to Portland, had assured me he would get me in contact with the “knife man”.  So, yet again on August 1 I contacted my guide of twenty years--twice and finally was told I would be able to talk with one of the “knife man’s” colleagues next Monday August 8. 

Side bar…. I’ve been wondering why the “knife man” won’t talk with me…

 I have come up with the following possibilities

1.    He and his office considers me a “troublesome patient” and do not want me ever in their office again.

2.    The “knife man” knows what he does best…using the knife.  He may not have time to talk to patients for several months.

3.    The “knife man” thinks like a good businessman and has figured out how to maximize his revenue while holding down costs.  Perhaps Medicare provides only small and/or fixed reimbursement for after surgery care.

4.    The “knife man” is so good and has been doing these surgeries so long that he knows my kind of questions are not worth his time and his patients all recover just fine.