Date sent: 10/08/99 09:32 PM
Subject: What's next????
Hey Gang,
Today was very busy and full of new pieces of information.
First, the appointment with Dr. Black. We took a "chair car", which is like
an ambulance, excpet they wheel the wheelchair in directly... so, Dan did not have to
transfer from one kind of seat to another. We got to Brighams and didn't have to wait for
too long... First, the nurse came in and took out Dan's stitches. They came out smoothly
and the healing looked great. Then Dr. Black came in and discussed Dan's neurological
function. He noticed places where Dan was getting stronger. And, still says that he
expects Dan to return to full function, he agreed with the rehab people that additional
inpatient treatment is called for. He said that we could travel home on Saturday, but that
he would think Dan would benefit more from an additional day or two to improve his stamina
for travel.
Next we discussed the pathology report. Overall, I would say it was about what we
expected (post-surgery), given it was already worse than we came here expecting.
Specifically, the tumor is categorized overall as oligodendroglioma. There were two parts
of the tumor that were mixed astrocyte and oligodendrocytes and were categorized as glioma
or mixed glioma. (Note: from our reading we know that oligos more often are mixed, and
conversely, that mixed tumors are treated as if, and generally behave as if, they are the
type of the predominant cell type... which is why, even though parts are mixed, overall it
is oligo...) The good news is that although the cells were "inflitrating" (ie,
not a well defined mass), they were not "anaplastic" (which has to do with both
with cell shape and alignment).
The not so good news is that the "proliferation index", which is a measure of
how rapidly the cells are dividing is higher than they would like to see and is concerning
to Dr. Black. The report says that an index higher than 3% is associated with a poorer
prognosis... Dan's index is 8.4 % I don't know how high up the scale goes.
What this means is that he does not require further treatment at this time. Dr. Black
said we will get MRI's at 1 month and 3 months and then every six months. If they see any
new growth he will need either chemo or radiation or both. The determining factor in that
is where they see the new growth... A single focal location might indicate radiation and a
"leading edge" might indicate chemotherapy. Dr. Black reiterated that oligos
respond well to chemo therapy (which would last 6 to 9 months). When asked how likely it
is that he would see new growth, he responded that he did not think he would see it in the
first month, or maybe even in the 3rd month, ... maybe not even in the first year, or
maybe not for 5 years. Then he said that because of this proliferation index, he wasn't
sure what to expect and that is why we will follow it. What we read between the lines is
that this fight is not over yet.
We talked more about the moment at which Dan knew he lost control of his strength. This
is very interesting and supports why Dr. Black is confident that Dan will regain his
strength. He told Dan that when he actually lost strength, they were running scans, and
the surgeons were just standing around talking. He also said that it happened relatively
quickly over a period of just a couple of minutes. He said this is very typical of the
supplemental motor area injury and indicates that it is coming from swelling. He said
there is a threshold effect where as the swelling comes up, the transmission can only
happen for so long and then when the swelling gets to a certain level, the transmission
can't get through any more.
As an aside, the nurse told us that as Dan weans from the decadron (the anti-swelling
med), the body will continue to try to heal by sending white bloods cells and supplemental
fluids (read edema) to the area, and so the swelling will still be there for several more
months and that healing in the brain continues for a year.
Finally, Dan asked Dr. Black if he was interested in some feedback. Dr. Black said that
he was (and he genuinely was). Dan told him about many of the aspects that were traumatic
for him and why (The conversation was pretty extensive, and Dan said he would like to
write some of it out, and Dr. Black said that he would really like to have it). Dr. Black
agreed that there were improvements that could be made in these areas including limiting
the number of doctors who could do concious sedation, improving patient education,
allowing music and or providing ear plugs to help improve the tolerability of the
experience.
Another interesting part of the discussion was Dr. Black said that Dan had 2 amnesiac
drugs, and quite a lot of them. He said that one reason that Dan remembered so much was
because his intellect just can't be turned off. He basically said that it might not matter
how much of those kinds of drugs they used, Dan's brain would be working to try to figure
things out, and would therefore remember. We also discussed that Dan already had tolerance
to the Benzodiazpene (sp?) family, and so, they might need to develope an additional
protocol for patients who may already have tolerance.
Overall, it was an extremely productive conversation.
Ok, so, the weight of the morning was over, and Dan was exhausted. He decided that he
would rather not travel on Saturday. We changed our reservations to Tuesday so that we
could get two seats together. I think he will be amply ready by then. We will be on
basically the same flght, leaving BOS at 11 am and getting to COL at 1:01 pm. Then he will
need to go to MVH for rehabilitation inpatient therapy for 3 weeks or so.
Although we are extremely disappointed that we are not going home tomorrow, it is
really only a couple more days. Better for Dan to feel a little more ready to travel. So,
that was just the morning! Dan was so exhausted that he did not do any other therapy... he
sent everyone away so he could rest... although he never did get to sleep. Dan's hard of
hearing roomie went home, and was replaced. The replacement had a medical situation come
up and was taken to the hospital... So, through some chances of fate, Dan has a private
room tonight, so hopefully he will sleep.
Also, Phil's sister Eleanor and her husband Jeff came, and so did Anne, Phyllis's
sister (Charlie had to stay home because he was sick... FEEL BETTER SOON CHARLIE!) all
came to visit today. Eleanor and Jeff got Chinese take-out, which we ate in the room with
some windows, and Anne invited me to share her hotel room... So, for all the people
telling me I need to take care of my self can relax because these two simple things are
like a spa holiday in the middle of all this stress. MANY THANKS ELEANOR, JEFF AND ANNE...
YOU HAVE REVIVED ME !!!!
Well, I need to sleep, so... will let you know more as we know more....
With Anticipation, Love and Hope, Abi and Dan
Date sent: 10/09/99 07:59 PM
Subject: Not much to say today...
Which is probably a good thing.
Dan did the usual work today of physical therapy (hall walking with two assistants),
occupational therapy (transferring from wheelchair to car... and thinking about
transferring from wheel chair to tub chair), speech therapy (memory aids, breath support,
avoiding stressing vocal chords). We also put Dan in the wheel chair and went out side
(doctor's orders!).... There is a nice walkway along the river right outside the door...
so we went there... We saw ducks, and some other bird whose name niether of us can
remember... Dan also napped and our company left mid afternoon...
Sigh, the strains of the days are lulling and we are counting down the days to our
return.
One additional note. Several people have given us very positive personal and profession
reccommendations for the Rehab at Miami Valley, so we are feeling more confident in this
choice.
With Love and Shalom, Abi and Dan
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