The following is a chronological listing of the significant events that have
occurred on my brain tumor journey. The point of this shorter, more focused
list is to provide a quick synopsis for those who don't wish to read through
the Chronology of Events or Seizure
Activity pages.
[ Aug 01 ] [ Sep
01 ] [ Oct 01 ] [ Nov
01 ] [ Dec 01 ]
[ Jan 02 ] [ Feb
02 ] [ Mar 02 ] [ Apr 02
] [ May 02 ] [ Jun 02 ]
[ Jul 02 ] [ Aug 02 ]
[ Sep 02 ] [ Oct 02 ] [ Nov 02 ]
[ Dec 02 ]
[ Feb 03 ]
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August '01
08.19.01 - Diagnosed with a brain
tumor after waking up with focal seizures in my right hand and right
foot.
08.22.01 - CT scans of my chest,
abdomen and pelvis are clean indicating I have a primary brain tumor.
08.23.01 - Underwent a 3 hour and 15
minute Vector Vision guided craniotomy by Dr. Thomas Ducker to remove as
much of the tumor as possible. The procedure was performed at Anne
Arundel Medical Center.
08.26.01 - Discharged from the
hospital.
September '01
09.05.01 - Learned the pathology of
my tumor, as read by Dr. Peter Berger at John Hopkins
Hospital, is a WHO
grade II astrocytoma.
09.10.01 - Returned to work
full-time.
09.11.01 - Met with Dr. Angel
Torano, a radiation oncologist, who explains the current protocol for
someone in my particular situation is to follow a "wait-n-see"
approach.
09.13.01 - Got my first post-op MRI
scan. All doctors agree the results are inconclusive and more healing
time from the surgery is required.
09.17.01 - Collected my medical
records and sent them to Dr. Mark Malkin at Memorial Sloan-Kettering for
another opinion.
October '01
10.02.01 - Memorial Sloan-Kettering
recommends I be "safely observed".
10.03.01 - Weird feeling of
numbness in my right leg below the knee lasting for less than a minute
(though I didn't realize it then, this was a seizure).
10.05.01 - Weird feeling of
numbness in my right leg below the knee lasting for less than a minute
(though I didn't realize it then, this was a seizure).
10.08.01 - Slight shaking of my
right hand lasting for less than 30 seconds (though I didn't realize it
then, this was a seizure).
10.09.01 - Slight shaking of my
right hand lasting for less than 30 seconds (though I didn't realize it
then, this was a seizure).
10.11.01 - My second post-op MRI
scan showed continued healing of the surgical site and no new
growth from the residual tumor (i.e. a "clean" scan).
10.13.01 - Slight shaking of my
right hand lasting for less than 30 seconds (though I didn't realize it
then, this was a seizure).
10.15.01 - Met with Dr. Lawrence
Klineberg at Johns Hopkins Hospital for another opinion. He agrees with
everyone else that I can be "safely observed".
10.27.01 - Prolonged numbness in my
right leg below the knee lasting for about 1-2 minutes. By now, I fully
realized these "episodes" were seizures.
November '01
11.15.01 - First seizure combining
the right leg and arm, which would become my signature seizure.
Initially, my right foot felt numb for a short period of time and
then that would stop, and the fingers on my right hand would twitch for
a brief period of time. The entire event usually lasts less than a
minute.
11.25.01 - Another signature
seizure (as described above on 11.15.01).
11.29.01 - Collected my medical
records and sent them to Dr. Henry Friedman at The Brain Tumor Center at
Duke for another opinion.
December '01
12.11.01 - Met with Dr. Damanhuri
Alkaitis, a neurologist, for the first time with the intent of getting
my seizures under medical control. He increased my Dilantin.
12.12.01 - Another signature
seizure (as described above on 11.15.01).
12.13.01 - Began a "leave
without pay" sabbatical from my job for 4-6 weeks to try to get my life back
in order and to contemplate the events of the past four months.
12.18.01 - Duke also recommended the
"wait-n-see" approach.
January '02
01.01.02 - Started the new year
with two separate mini-seizures, one in my right hand and then another
in my right foot.
01.02.02 - Another signature
seizure (as described above on 11.15.01).
01.03.02 - Spoke with Dr. Alkaitis
who suggested another increase in Dilantin.
01.05.02 - Given an EEG examine.
The results were normal (i.e. no seizure activity).
01.07.02 - Met with a nutritionist
who did not recommend any dietary, vitamin or supplement suggestions
regarding my brain tumor.
01.10.02 - Another signature
seizure (as described above on 11.15.01).
01.20.02 - Another signature
seizure (as described above on 11.15.01).
01.31.02 - Another mini-seizure in
my right hand. Met with a holistic family medical doctor who recommended
various dietary supplements, which for the time being I'm not starting.
February '02
02.01.02 - Another signature
seizure (as described above on 11.15.01).
02.04.02 - Got another periodic MRI
scan, which is "clean". Drs. Ducker and Torano continue to
recommend the "wait-n-see" approach.
02.05.02 - Met with Dr. Alkaitis
who suggested a switch from Dilantin to Depakote.
02.08.02 - Visited with Dr. Henry
Friedman at Duke. He continues to recommend the "wait-n-see"
approach I'm now following.
02.11.02 - Returned to work
full-time after my temporary sabbatical, which had grown to 8 weeks.
Later that night, had another mini-seizure in
my right hand.
02.19.02 - Celebrated the six month
anniversary of my BT diagnosis. The current "treatment
protocol" I'm following is to continue getting MRI scans every 3
months. These scans will be reviewed by my local doctors first and then
will be sent to The Brain Tumor Center at
Duke. Furthermore, every 6
months I plan to make a trip to Duke for evaluation.
02.20.02 - Another signature
seizure (as described above on 11.15.01).
02.21.02 - With my Depakote level
under the lower limit of the nominal range and with my continuing
seizure activity, Dr. Alkaitis suggests another dosage increase.
02.27.02 - Made the difficult and
scary, yet extremely satisfying, decision to quit my job (the
environment was not conducive to survival) and begin the
next chapter of my life.
March '02
03.06.02 - Another signature
seizure (as described above on 11.15.01).
03.11.02 - Began working
part-time from home for a previous employer to help "bring
home the bacon". The remainder of my time is spent pursuing
other interests such as writing a book and figuring out what I want to
do with the rest of my life.
03.16.02 - Adopted a black lab mix
puppy from an animal shelter. Her name is Maggie.
03.22.02 - Met with Dr. Selonick
for a regular checkup.
03.25.02 - Another signature
seizure (as described above on 11.15.01).
April '02
-
04.02.02 - Spoke
with Dr. Alkaitis about my seizure activity and he recommended another
increase in my Depakote dosage.
-
04.03.02 - Had
two signature seizures (as described above on 11.15.01), one in the
morning and one in the evening.
-
04.04.02 - Another signature seizure
(as described above on 11.15.01). Note that for the past two days I was
extremely tired due to early morning puppy duty.
-
04.07.02 - Met with Dr. Kerry Thompson,
a neuro-radiologist. He recommends an additional procedure be done when I
get my MRI next month that will potentially provide more insight into the
remaining tumor's "activity" level. This procedure is known as
MRI-SPECT.
-
04.18.02 - Attended a seminar by Bernie
Siegel, author of many inspirational books and
founder of Exceptional Cancer
Patients, on the "Healing Power of Love".
-
04.29.02 - Another signature seizure
(as described above on 11.15.01). This one occurred around 8PM after
Maggie's dog training class.
May '02
-
05.04.02 - Attended the Heroes
for Hope Golf Tournament (as a non-golfer), one of the kick-off events
for Brain
Tumor Action Week. However, after arriving, signing in and getting our
t-shirts, we soon left due to the combined effect of Debbie's bad cold and
the event being held outside, which added to her problem's due to her
severe allergies.
-
05.05.02 - Participated in The
5th Annual Cassidy & Pinkard Brain Tumor Society 5K Run / Walk,
another event during Brain
Tumor Action Week. You can view the results of race here.
I completed the race in 39:52, which isn't bad considering I'm not a
runner, it was my first race of any kind and I didn't train one bit. I made a
promise to return next year and cut my time in half.
-
05.17.02 - Had three signature
seizures, throughout the day. Duration and intensity of each one was
considerably less than is usual.
-
05.19.02 - Nine month anniversary of
being diagnosed with a BT. Attended a concert by David
M. Bailey at COA Presbyterian Church in Annapolis, MD. David's story is
very inspirational to all, especially BT survivors. Also had three seizures this day. One was a signature
seizure and the other two occurred only in my right foot.
-
05.20.02 - Had my nine month
post-diagnosis / surgery MRI. In addition to the standard MRI of the brain
with contrast, two additional imaging techniques were done: axial
diffusion and perfusion.
-
05.21.02 - Met with Dr. Ducker to discuss
the MRI results, which were "clean". Dr. Ducker continues to recommend
the "wait-n-see" protocol.
-
05.31.02 - Met with Dr. Alkaitis about my seizure activity and he recommended another
increase in my Depakote dosage.
June '02
-
06.02.02 - Had another signature
seizure.
-
06.03.02 - Had a reverse signature
seizure (starts in hand then went to foot).
-
06.05.02 - Received a phone call from
The Brain Tumor Center at Duke saying they'd reviewed the MRI scans I sent
them two days ago and the scans showed "stable disease".
-
06.19.02 - Had another signature
seizure.
-
06.26.02 - Had about half a dozen
signature seizures throughout the day.
July 02
August '02
-
08.05.02 - Getting my one year post
diagnosis / surgery MRI. In addition to the standard MRI of the brain
with contrast, two additional imaging techniques will be done: axial
diffusion and perfusion. Had another signature seizure.
-
08.12.02 - Met with Dr. Ducker to discuss
the MRI results, which were "clean". Dr. Ducker continues to recommend
the "wait-n-see" protocol.
-
08.14.02 - Met with Dr. Reardon at The Brain Tumor Center at
Duke for my 6 month checkup. He agrees my latest scans are "clean" and it is Duke's recommendation that with one year of
clean scans behind me it is safe to widen the MRI schedule from every
three months to every four months. Duke also continues to recommend the
"wait-n-see" protocol.
-
08.19.02 - Celebrated the one-year
anniversary of my brain tumor diagnosis as my first "2nd birthday"
with my wife, Debbie. Had another signature seizure.
-
08.28.02 - Had another signature
seizure.
September '02
-
09.11.02 - Met with Dr. Alkaitis to
discuss my seizures. He did not recommend a change in medication at the
present time (see the Seizures page for more
info).
-
09.22.02 - Had another minor (intensity
and duration) signature
seizure.
-
09.23.02 - Spoke with Dr. Alkaitis and
he recommended another minor increase in my Depakote dosage.
-
09.24.02 - Had another signature
seizure this one more intense than the one on Sunday.
October '02
-
10.09.02 -Had another signature seizure.
-
10.10.02 - Spoke with Dr. Alkaitis and
he recommended a change in my anti-seizure medication, adding Lamictal to
the mix.
-
10.23.02 - Had another signature
seizure (in my right hand only).
-
10.30.02 - Had another mini-signature
seizure of very, very short duration.
November '02
December '02
February '03
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