Getting used to alternative plumbing

This is the dressing.  Nurse Dereka has gotten very good at it and thank goodness we didn't know in November that it would still be operative in January!




This is the basic plumbing set-up.  Two kidneys, two ureters, one bladder.  John's left ureter is blocked.  I added this because Eliza was unable to picture this piece of innards.


When I blogged two weeks ago, I mentioned that we expected some follow-up from the physician leading the charge with John's case.  We got a call the very next day and were bidden to return to Boston on the 2lst.

  Our doctor is the elegant and splendidly named Aria Olumi and we like him very much.  This despite the fact that he is quite guarded about what might be going on with John.  He suggests that the ureter problem is probably not connected to the bladder problem, being very close to the kidney and relatively speaking very far away from the bladder.  He showed us the pictures from the most recent contrast study.  It does not look to him like cancer but it might be (his words).

So, the next step, to take place on 5 February, is to return to Boston.  On that visit they will remove the stent from the ureter and examine the flow using constrast.   If by some miracle the ureter works properly both stent and tube will be gone.   If the ureter is still constricted they will replace the nephrosomy tube but not the stent.  In that case, the kidney will simply be drained by the nephrostomy tube.  Without the stent, Dr. Olumi will be able to take a better look-- not with dye but with a scope.

We questioned him about possible alternative scenarios but he skillfully avoided saying anything speculative.  He simply told us that future steps would depend upon what he sees with the scope.  We also questioned him about the delay with the BCG chemo for the original cancer and he was reassuring that we are well within the parameters of effective treatment.

 It was a very civilized trip compared to some of the others-- an appointment at 10:15, no procedures, out by 11:30 and home before 2:00.  One might question why we had to drive to Boston at all for a consult that could have taken place by phone but then one remembers that physicians cannot bill for phone consults.  And, he did show us pictures.

In a Rut

John has become a suspender man.

Here are the opening words of one of John's recent health summaries.  "Mr. Langhans is a thin elderly gentleman"... what?  who?  Bring me the modern equivalent of smelling salts!  (that would probably be a gin and tonic) Thin, I grant you but elderly?

I last wrote on November 18th after our fourth trip to Mass General.  There the nephrostomy tube that was placed on November 3rd was not removed as we expected but replaced with a more sophisticated version.  On December 10th we returned to MGH in the expectation that the tube would be removed but when John awoke from anesthesia the tube was still in place.  So a month has passed with daily dressings and maintenance of the charmingly titled "leg bag".  Again today, with high hopes, we were at MGH and still he has the tube!  This time, at least, the Irish radiologist who did the procedure had repeated phone conversations with our urologist, doctor Olumi, who is a bigwig and the lead man on the case.  While John could not hear the discussions, the radiologist finally told John that Dr. Olumi was "going to reach out to him".

Talk about learning to be one's own health advocate!  John and I need a lot of assertiveness training before we will get anywhere with MGH.  The promise of being "reached out to" felt like a victory.   MGH gets high marks all around for medical care but each visit is a ride on a conveyor belt where the patient gets questioned, poked, prodded, medicated, anesthestized, monitored and finally spit out at the other end, knowing little more than at the beginning of the ride.  The procedures are invariably done by a radiologist and a fellow or some kind of lesser deity and they are not willing or able to discuss the details of the case.

Today we were told to arrive at 9 for a procedure at 10.  As always we took our places in the overheated and overcrowded room waiting room where the victims (I mean patients) have changed into hospital gowns and are too nervous to do anything and the"family members" stare at their various devices.  Eventually, and this can be at a time that bears no relation to the supposed time of the procedure, one is called away.  John was gowned early today and the iv put right in so we foolishly thought that the conveyor belt would move more quickly but in fact he was not actually "taken" until noon.  The only good thing is that the same procedure that twice before has required general anesthesia followed by a two hour observation period, this time required only a local so he was done by one and we were outta there!

So to sum up, there is really no change since the last time I wrote.  We do know, having read lab results online, that there is no "mitosis" going on and remembering a little bit of high school science, I think this is a good thing.  We are frustrated first of all because we don't really know what is going on or have any idea about the long range plan.  Secondly, until this situation is resolved, they cannot begin the chemo treatments for the bladder cancer that was the starting point of this whole thing.  And finally, because it is annoying for John to have endless weeks with a leg bag.  On the other hand, there are lots of people who would trade for our problems so I will quit whining and be grateful for the many blessings we have.

Too much information?

A visit from Juliet

My blogging has been sporadic to put it mildly but I persist in hoping that I can report some constancy.  This has not yet happened so here goes for an update.

What follows is a detailed description of John's plumbing problems that may seem like TMI to some.  In that case, know that he is not seriously ill but is plagued by problems sufficiently dire to require ongoing medical care.  You need read no further.  

My last post reported that good news that John's bladder cancer was not as pervasive as feared and that there were no lung metastases.  We did not actually have a date to go back to Mass General and talk to the docs about what came next until November 10th.  

In the meantime, however, John began to feel ill again on Saturday, November lst.  That night he went to the emergency room and was diagnosed with a kidney infection.  He was given IV antibiotics in the ER and sent home with prescriptions for various things.  Thinking he would take the medicine and get better, I tooted off on a long delayed trip to Maine (we had both intended to go).  I had not even reached Belfast when I got a message that John was back in the ER and a few hours later, that he had been admitted to Cooley Dickinson Hospital. Thanks be for Eliza and Michael who were available to help John out in my absence.  

The next day I did various errands and visits in Maine and monitored the situation in Massachusetts by phone.  Mid-afternoon, John called to say that his doctor had decided to do an emergency procedure to bypass a blockage somewhere in his plumbing system and I decided that I would cut short my Maine stay and return to Northampton.  The procedure they did is called a nephrostomy and consisted of placing a tube to drain urine from a hole on his side. They kept John in the hospital until that Friday.

Our long awaited visit to the doctors at Cooley Dickinson was scheduled for that Monday so off we went.  Our MGH doctor scheduled a "study" for the next Monday.  This was supposed to determine whether the antibiotics has worked to unblock his system, meaning he could go back to normal or alternatively whether a stent needed to be placed.  That was yesterday. 

We had assumed that if placed a stent would replace the nephrostomy tube and were taken much aback when all was over and it turned out that he got a stent and kept the NT as well!  Apparently his ureter has narrowed (why?  no-one seems to know) and they are trying to stretch it with the stent.  We go back in a few weeks for another "study" (they use contrast radiography).  As for the long term treatment for the bladder cancer, that will be done with the BCG treatments that are standard for non-invasive cancer but it is all on hold until the other problems are resolved.  

A tough day at MGH-- we didn't get out of there until 6:30.  It ended with a nerve wracking rainy drive along the Mass Pike, embellished by a forty minute crawl along 8 miles of accident slowed highway.  But it was warm and cozy in our car, we had Pandora and each other and we were home safely at last.  

John sets a new record

John reading the paper - 28 September 2014

This was quite a week.  Nothing very astonishing, just the mundane ways in which illness changes everything.  On Monday we were expected for an afternoon appointment at Massachusetts General Hospital but that morning John woke up with alarming symptoms that nearly made us panic until we finally reread the literature and learned that this was all to be expected and not to worry.  So off we drove to Boston with the usual misadventures of missed exit, wrong turns, blocked streets and spirited discussions of who was to blame.  Eventually we arrived in the controlled chaos of a system which doesn't really care if you are a few minutes late because you will sit around and wait in any case.

I had pictured a nice conference room with physicians around a big table but in fact five physicians crowded into a small exam room where John and I were in the only two chairs available.  We were introduced to each (two urologists, a radiologist, an oncologist and a mystery doctor).  Based on our Northampton physician's suggestion that John would need need several chemo treatments and eventual surgery, we hoped to get a time frame for all that.  In fact, we learned that they planned to redo the same procedure John had on September 3rd in Northampton, and only after that will they discuss treatment options.  This new TURBT is scheduled for October 6th.

On Tuesday morning the symptoms about which we were not to worry had turned into a full scale urinary blockage that had us rushing to the Emergency Room at Cooley Dickinson Hospital.  Here John was given morphine and a new catheter and sent home with cheery assurances that all would be well.  All was not well and on Wednesday John returned to the ER, this time with a blocked catheter.  On Thursday he was back at CDH, this time for a chest CT scan ordered by the doc at MGH.  On Friday we returned to Boston for an afternoon of pre-operative discussions and procedures-- EKG, blood test, and urine test that was complicated by the catheter.  The catheter, about which the nurse at MGH did not know, flummoxed her a bit and gave us a rueful laugh-- but a rueful laugh is better than no laugh at all!

Thus we had a week in which John went to one hospital or another on each of five consecutive days.  Proving again the old adage that one can get used to anything, John seems far less concerned about the second surgery-- and since the first one was much worse than expected, it is reasonable to expect that the second one will be much better.

That was fast!

Just got a call from the scheduler at Urology Associates.  They have set us up for an appointment at Mass General on the 22nd of September and an appointment with an oncologist here in Northampton on 8 October.

Background on the Diagnosis

Before I decided that we were in for the long haul, I planned to send periodic updates about John's situation.  This was the first one, giving some of the background and describing his TURBT procedure.  Now that we see that BC is going to be our main preoccupation for some time, I decided that a blog makes more sense.  Below is the text from the initial email I wrote on 4 September.  

**********

Some of you already know and some do not that on 8 August John was diagnosed with bladder cancer.  He had initial concerns in June while we were still living in Maine and things came to a crisis the day the moving truck was being loaded.  Because of that he had an appointment with a urologist here in Northampton immediately after we arrived.  Various tests and procedures ensued until the diagnosis was made.  Yesterday he had a surgical procedure at Cooley Dickinson Hospital in Northampton.  The procedure is called TURBT (Transurethral Resection of Bladder Tumor). 

Needless to say, we were hoping that the progress of the cancer was minimal and that the doc would send us off with a cheery farewell and a promise to "keep and eye on it".  This was not to be. 

On the other hand, things are not as dire as they might be.  Although extensive, the cancer does not appear to have gone through the bladder wall-- we are sure of nothing until we get the pathology report at the end of next week.  Bladder cancer is highly treatable and John's doctor, in whom he has great confidence, has already suggested that we may need to move on to Boston or Hartford for the next step.  

The surgery took about three hours and John was under general anesthesia for the duration.  He was pretty miserable when I finally saw him in recovery and remained uncomfortable for some hours.  He is reasonably cheerful this morning.  We take great comfort in the fact that our recent move to Massachusetts has brought us closer to family-- talk about timing!  Also, while our planned 27 day bicycle trip went out the window the minute the initial diagnosis was made, we are grateful that we can now attend Celia's wedding later this month.  

In light of the fact that we do not yet know the stage of the cancer, I might have waited to write this note.  On the other hand many people did know that a procedure was scheduled and were interested in an update.  So here it is and I will write again next week after the pathology report.  

Pathology Report

Hatfield 9 September 2014

This morning John and I went to Urology Associates to have his catheter and stent removed.  We were not expecting to get the pathology report until later in the week but it had arrived.  Dr. Tran removed the catheter and etc. while I sat in the waiting room but asked me to come in to hear what turned out to be reasonably bad news.

John's bladder cancer is staged as T2a, meaning that the cancer has infiltrated the muscle wall of the bladder.  This means that the bladder cannot be saved and the option of treatment with BCG* is not available to him.

Dr. Tran is affiliated with Cooley Dickinson Hospital in Northampton, Massachusetts and CDH has recently become an affiliate of Massachusetts General Hospital in Boston.  Dr. Tran has suggested that John's further treatment be managed by a team at MGH and an initial meeting is being scheduled.  This meeting will be informative only and should take place within the next couple weeks.  Following that meeting we will also meet with an oncologist here in Northampton.

When a month has passed, allowing for recovery from the TURBT procedure John had last Wednesday, he will undergo several chemotherapy treatments, probably locally.  When that phase is complete, we will go to Boston for surgery to remove and reconstruct the bladder.  There are several options for bladder replacement and that is one of the things that we will discuss when we go to MGH.

Dr. Tran used these words  "It is big surgery but good surgery".  We need to plan for John to be in the hospital for about a week and the recovery is difficult but the outcomes are very good.

*BCG stands for Bacillus Calmette-Guerin.  It is used to treat bladder cancer in cases where the cancer has not infiltrated the muscle wall.

The good news?  Dr. Tran says that he can drink beer!