[When you last heard from me, the issue of what to
do next was opened and it is still unresolved. But that has
been shelved because of recent developments that I describe
here.]
Barbara has been growing increasingly lethargic
in the past few weeks and having more difficulties
with her speaking. There seemed to be a transition
for the worse on November 10. I managed to find
out that her daily dose of steroids had been
discontinued on that day and was able get it
reinstated because (I suspect) that Dr. Delosso was
humoring me. (He seemed to base his reaction on
the behavior of his mother when his father had
also had an aggressive astrocytoma.)
Since the onset of Barbara's increased weakness
and fatigue there were many ups and downs, yet
Barbara carried on with her usual bravery, cheering
people up with warm smiles of recognition as they
came by. But, by the weekend of November 21,
she had become ever more somnolent and was
unable to interact with her visitors over that
weekend. By Tuesday morning (23rd), she was
unable even to stand up for her physical therapy
and was put into bed shortly before 10:00am. I
was unable to wake her in the next two and a half
hours and sought medical advice. No one was
available at Dr. Omuro's number and the local
medical staff on Hudson St. was in conference,
but I finally reached Dr. David at the Rusk
Institute on 17th St. Dr. David suggested that it
was an emergency and that she ought to be
taken to a hospital.
When Dr. Delosso in the rehab center finally emerged
from the meeting, he agreed that the situation was
serious and arranged to have Barbara taken to MSKCC.
Once there, we went straight to the Urgent Care Unit
where we spent some time having a chest X-ray, a CT
scan and a catheter inserted to measure the urine
production. We were then moved up to our old haunt,
the neurology ward. There the neurologist on the night
shift, Dr. Saad, came to tell me that he suspected
meningitis. I googled meningitis and I did not find the
diagnosis convincing. Dr. S. wanted to do a spinal
tap (a.k.a. lumbar puncture). I asked why he did not
get the fluid from the shunt and he said that only a
neurosurgeon can do this and there is none on duty
in the evening.
Since Barbara's symptoms were not a good match
for the list I had found on Google so I didn't know whether to let
them do the puncture. However, Dr. S. considered it
urgent to start the treatment at once if Barbara had
meningitis. So I finally agreed, after consultation
with Mimi and Engelbert, though I still had misgivings.
Barbara did not enjoy the proceedings and, as I
learned early the next morning, she did not have
meningitis. Medical opinions that I received the next
day confirmed my suspicions that the lumbar puncture
was ill-advised.
[ An Aside.
When you get off the elevator on our floor of MSKCC,
you are greeted by a poster warning people not to visit
if they have cold symptoms --- fever, sneezing, sniffles,
cough. But when the Dr. S. was getting ready for the
spinal tap (on our floor), he put on a mask, behind
which he was coughing. I asked if he had a cold. He
said that he did not, it was only a sore throat.]
Before Barbara's lumbar was punctured, we had to
wait till after the MRI was made. As it turned out, a competent
examination of that would have suggested that the tap was
unnecessary. And so Barbara suffered for my uncertainty.
But that MRI brought even worse news: the tumor has grown.
I learned this first from a Dr. Chan who was doing rounds together
with the usual crowd of acolytes. Dr. Chan, who was on his last
day in MKSCC, said that the latest MRI had indicated growth of
the tumor and thought that some portion of the tumor might be surgically removable.
However, Dr. Gutin came by later in the
day and expressed doubts about this suggestion. He will talk
to Omuro about this. In the meantime, Barbara's dosages of
steroid and anti-seizure medication have been increased. If
she can get stronger she may be eligible for trials of some kind.
Otherwise, some sort of hospice care is the forlorn option.
For now, we are still in MSKCC and are likely to be here till the
November 29th, at any rate.
Ed
