Rumination 7: The Path Ahead

Rumination 7: The Path Ahead

June 21, 2007

 

We had a glorious time in Italy, spent entirely in the
medieval part of whatever town we were in. While,
alas, it is no longer true that one cannot get a bad
meal in Italy, we had wonderful food and great wine,
with the seafood on the Adriatic coast in Pesaro being
particularly outstanding.  I was also delighted to
discover that the Wiener Schnitzel I make at home
(with veal from Boston's North End) is better than the
veal cutlet Milanese at an otherwise superb and highly
rated restaurant in Milan.  The osso bucco at the same
restaurant is better than what we can make, possibly
because they can get veal shanks and we have to make
do with beef. The fish in the fish stores brought us
close to tears because we did not have a kitchen and
they had such an interesting variety of exquisite
seafood so beautifully displayed.

 

We took lots of pictures and Katherine has begun
posting stories and pictures on her blog,
http://upislandeggs.blog-city.com/. Further episodes
will be posted over the next few weeks. I felt great
the whole time, and were it not for the radiological
and pathological evidence to the contrary, I would
remain convinced that I had at least another 20 good
years left in me.  I really cannot say that I feel any
different now than I did at 60.

 

Only one thing kept the trip from being perfect, a sin
of omission that also changed the path ahead. Several
days before we left, I left voice mail for my medical
oncologist,  telling him that I would have a much more
relaxed trip if I knew the results of the diagnostic
radiology that had been performed a week earlier.  The
next day, his secretary called me to say that the
doctor was out of town until the following Wednesday
and that his nurse was also out of town until Monday.
I asked her if she could e-mail me the reports but she
did not have the authority to do that.  She said that
she would leave a note for his nurse who was expected
back Monday morning, asking her to get the information
to me before I left; she also suggested that I e-mail
him and gave me his e-mail address.  I sent an e-mail
to both him and his nurse, explaining that giving me
the report would greatly reduce my anxiety during the
trip and giving them three routes (e-mail and two
phone options)  for reaching my while I was in Italy.
No attempt was made to reach me, not even to tell me
that they would not provide the information.  What I
got was silence. Unfortunately, in the few months that
I have been his  patient, this has happened twice
before. In fact, at no time has he or anyone on his
staff initiated any contact with me. I have always had
to ask for information, even information such as the
results of diagnostic studies, that I feel they should
have provided without prompting from me.  Add to that
the fact that when both he and his nurse are out of
the office, as happened when I called, his secretary
did not or could not suggest that I speak with anyone
with authority to act on his behalf, even for such a
simple matter as pulling a report up on a screen and
reading it to me.

 

Mulling over the lack of communication during several
days of anxiety interrupted sleep produced by my
concern over what the radiology reports might contain,
I concluded that it would simply be a source of
aggravation for me to participate in a phase I
(initial human) trial of an experimental drug being
carried out by an office with such a consistent
reluctance to communicate.

 

 The telephone communication we had on the day after
we returned (June 20) would be very funny if it were
not also a sad recap of the ongoing communication
problem.  At 8:00 am (all times approximate; quotes as
close as I can recall them). I called the doctor and
left voice mail:

 

"This is Tom Vogl.  We are back and I have not
received the radiology report from the scans done on
May 23rd. I will appreciate receiving them at your
earliest opportunity, preferably be e-mail or by
phone. 508-... Thank you."

 

At 10:00 a.m. (after talking with Dr. Mc Anaw) I
called his appointment secretary (AS):

Me: "This is Tom Vogl.  I'd like to cancel the scans
scheduled for the 26th and my appointment with the
doctor on the 27th."

AS:"OK.  Can I tell the doctor the reason?"

Me: "If he is interested, he may call me."

"Goodbye."

 

At 10:15 a.m. I received a call from the doctor:

MD: "My AS tells me you want to talk to me."

Me: [biting my tongue and focusing on what I care
about]: "I still have not received the radiology
report from May 23rd."

MD: "I got the message from you before you left. Let
me pull up the report." (He then gave me a brief,
accurate summary.)

Me: Thank  you.

MD: Goodbye.

 

Since my oncologist (whose medical and scientific
knowledge and competence I continue to hold in the
highest regard) is convinced that no viable
therapeutic options exist for me, it seems a change of
course in my care is called for.  It makes no sense
for me to commute to Boston for palliative care from a
highly knowledgeable physician whose knowledge cannot
help me and who has trouble communicating. My primary
care physician on island in conjunction with the
island's world-class hospice, and in consultation with
medical and radiation oncologists in Hyannis who visit
the island on a regular schedule can serve my limited
needs at least as well, and with far less hassle.

 

So, yesterday morning I had a very positive
conversation with Dr. Robert Mc Anaw, who was my
radiation oncologist in Hyannis last year [both
Katherine and I think he is great, for many different
reasons] and we are on our way to set up a Hyannis
based program of care for me.

 

As described to me by Dr. Mc Anaw, palliative care
these days is defined as the other extreme from the
'let's go in with all guns blazing' approach of
tertiary care facilities. (Excepting, of course as
always, the truly great physicians, like Dr. Norris,
who know better. Even in my wildest dreams I cannot
discern how to thank Dr. Norris enough for not
completing the neck dissection and thereby leaving me
fully functional.) In palliative care, diagnostic
tests are done only in response to symptoms and only
symptoms are treated and controlled.  My problem with
this is that I am not an extremist and I do like to
know what is happening.  I can live with waiting for
symptoms of liver failure or lung metastases, although
I would be more comfortable with an occasional look
while asymptomatic (say every six months), to get some
idea of how slowly/rapidly the disease is progressing.
 What I doubt I can live with is not knowing whether
there any brain metastases, and if there are, where
they are.  Behavior and mood changes resulting from
brain metastases are far too subtle to be left to
subjective diagnosis and far too hard on the family
and caregivers when they occur. [Metastases in the
brain stem are one thing; in the frontal cortex or
hippocampus, quite another!] Consequently, I will make
it a priority task to convince the new oncologist that
a brain MRI is called for every three to four months.
If Medicare won't pay for it, I guess I will have to.
Likewise, I believe a whole body PET scan every six
months, even when asymptomatic, is worthwhile.  After
all, melanomas have been known to regress and even go
into remission in patients whose immune systems have
suddenly kicked into high gear.  The odds of this
happening are small, probably as small as the odds of
getting mucosal melanoma in the first place.  But if
it happens, it would be nice to know about it, rather
than continually expecting the worst six months down
the road.

 

I feel amazingly comfortable with this plan, provided
I can get the occasional scan.  No one can predict how
long I will survive; there is a suggestion, based on
the fact that I am still asymptomatic, that the tumor
may be growing relatively slowly.  If that is really
the case, that would be very nice indeed. I would love
to be able to make it another 18 months so that
Katherine and I can celebrate our 30th anniversary.
Who knows, it may happen and I may even go on to make
it to 80.