[ Aug 01 ] [ Sep
01 ] [ Oct 01 ] [ Nov 01 ] [ Dec 01 ]
[ Jan 02 ] [ Feb 02 ]
[ Mar 02 ] [ Apr 02 ] [ May
02 ] [ Jun 02 ]
[ Aug 02 ] [ Sep
02 ] [ Nov 02 ] [ Dec 02 ]
[ Feb 03 ]
[ Bottom
of Page ]
August 2001
Sunday, August 19, 2001
While visiting family in Brick, NJ, I woke up with focal seizures in my right wrist and
right foot. After visiting the local hospital's ER, I was diagnosed with a brain tumor.
The diagnosis was made based on a CT scan of my brain. A chest X-ray and an EKG were
also performed and later that afternoon I was given an EEG.
Monday, August 20, 2001
Having spent the night at Brick Hospital, an MRI was taken of my brain in the morning.
My wife and I requested that assuming my condition was not immediately
life-threatening, we be allowed to return to our home and our own doctors in Annapolis,
MD. The doctors released me later that afternoon. My wife Debbie drove.
Tuesday, August 21, 2001
Debbie and I met with our family doctor, Dr. Stuart Selonick. Dr. Selonick
specializes in internal medicine, oncology and hematology. He is affiliated with
Johns Hopkins Hospital, where he currently teaches. He met with us for roughly 90 minutes,
ordered a full body CT scan for me and sent us to talk with Dr. Thomas Ducker, a
world renowned neurosurgeon. Dr. Ducker takes one look at my MRI films and
says, "There goes Thursday."
Wednesday, August 22, 2001
I got a CT scan of my chest, abdomen and pelvis. The report later came back negative
for evidence of any other types of cancer in my body. Therefore the tumor in
my brain is not a
metastatis from another part of my body and is the primary site of the disease.
Thursday, August 23, 2001
I underwent a 3 hour and 15 minute Vector Vision guided craniotomy in an attempt to
remove as much of the tumor as possible. After surgery, Dr. Ducker informs Debbie he feels
confident they removed 90-95% of the tumor though subsequent MRIs would tell them more.
Dr. Ducker also tells Debbie they were fairly close to the motor strip during surgery so
we shouldn't be surprised if I experiences some weakness on my right side.
However immediately
after surgery and ever since, there has been no apparent weakness on my right
side (or anywhere else).
Sunday, August 26, 2001
I'm discharged from the hospital. I'm not allowed to be alone and I'm not allowed to
drive. I'm also instructed to keep the stair climbing and physical activity to a minimum.
Friday, August 31, 2001
I have my first post-op visit with my neurosurgeon. Dr. Ducker removes half the staples
from the surgical site and informs me I can be left alone again and am able to
drive short distances. I'm informed my physical activity is whatever I am willing and
able to do.
September 2001
Wednesday, September 5, 2001
I have my first post-op visit with my primary care physician. Dr. Selonick says the
hospital pathologist finds that "although an oligodendroglima (with abundant
dystrophoic calcifications) is favored, a low grade astrocytoma is also considered in the
differential diagnosis". The biopsy slides were sent to Dr. Peter Berger at
Johns Hopkins Hospital for a second opinion. Dr. Berger says the tumor is a WHO grade II
astrocytoma.
Thursday, September 6, 2001
I made another visit to the neurosurgeon's office where the remaining staples are
removed.
Monday, September 10, 2001
I returned to work full time physically (mentally it's another story).
Tuesday, September 11, 2001
I have my first appointment with Dr. Angel Torano, a radiation oncologist. Dr. Torano
explains the current protocol for someone in my situation (age, tumor type, tumor grade,
amount of surgical resection, symptoms) is to take a "wait-n-see" approach
rather than starting radiation treatments right away. He asks me to schedule
my first
post-op MRI.
Thursday, September 13, 2001
I get my first post-op MRI scan. All of my doctors (Drs. Ducker, Selonick and
Torano) agree the results of the MRI are inconclusive as more healing time
from surgery is needed. All the doctors feel it is safe for me to wait another four weeks and
then get a
second MRI.
Thursday, September 27, 2001
I collect my medical records, MRI films and pathology slides and send them to Memorial Sloan-Kettering
for a "record review". Dr. Mark Malkin would be
overseeing my case.
October 2001
Tuesday, October 2, 2001
Memorial Sloan-Kettering
suggests I be "safely observed" with MRI scans every
3 months. The MSK pathology report agrees with Dr. Berger's findings but adds the
following: "As we have difficulty demonstrating mitotic activity, this would qualify
as a WHO grade II lesion. The level of nuclear atypism exceeds the expected for an
indolent astrocytic neoplasm."
Thursday, October 11, 2001
I got my second post-op MRI scan.
Monday, October 15, 2001
Debbie and I meet with Dr. Lawrence Klineberg, a radiation oncologist, at Johns Hopkins Hospital
for another opinion. Dr. Klineberg's recommendation is in agreement with MSK
that I be safely observed. Further, it his opinion after review of my latest MRI scans
that my surgery can be classified as a "gross total resection".
Thursday, October 25, 2001
Debbie and I have a follow-up visit with Dr. Torano. Again we discussed the pros and
cons regarding the "wait-n-see" approach. Upon viewing my latest MRI scans,
Dr. Torano feels Dr. Ducker removed 50-60% of the tumor.
November 2001
Thursday, November 1, 2001
Debbie and I visit with Dr. Ducker. As the lone voice still presumably calling for early
radiation, we were very interested in hearing what he had to say. However he told us that
when he said early radiation, he meant early as in 6 months after surgery (not a few weeks,
which is what we assumed). Upon viewing my latest MRI scans, he said he felt comfortable
it could be called a gross total resection.
Monday, November 19, 2001
Debbie and I meet with Dr. Selonick. The appointment lasts for roughly 60 minutes and
much information regarding the treatment of brain tumors is discussed.
Tuesday, November 20, 2001
I called The Brain Tumor Center at
Duke where the procedure I should follow
to allow Duke to begin reviewing my case is explained. I am informed Dr. Henry Friedman would be
calling me by the end of the day. When Dr. Friedman calls, and after I've presented a
summary of my case, Dr. Friedman informs me that Duke's recommendation is also likely to be the
"wait-n-see" approach. Furthermore, he suggests I be monitored by one the
premier brain tumor centers in the country. Dr. Friedman explains that monitoring means
sending my periodic MRI scans to the center and then making a personal visit to the
center every 6 months. When asked, Dr. Friedman said he considered the three premier brain
tumor centers in the country to be Duke, MD Anderson and UCSF.
Thursday, November 29, 2001
I collect my medical records, MRI films and pathology slides and send them to The Brain Tumor Center at
Duke for their initial review. Once my case is reviewed, Duke will
be calling me to schedule an appointment for Debbie and I to come down for a visit.
December 2001
Sunday, December 2, 2001
I unexpectedly receive a phone call from Dr. Friedman at Duke. He tells me in his
opinion my surgery was a "very good resection". He explains that he's waiting
on the results from the pathology lab at Duke. After getting those results, he said he'd
be calling me back with their recommendation. He asked if I was planning to make a
visit down to the Duke facility and I told him I assumed that was the standard protocol
and that both my wife and I were planning to make the trip.
Tuesday, December 11, 2001
I have my first appointment with Dr. Damanhuri Alkaitis, a neurologist. The main
purpose of seeing Dr. Alkaitis is to help monitor and hopefully control my seizure activity by simply adjusting
my medication. At the time, I was taking 200 mg
of Dilantin twice a day. Dr. Alkaitis suggested an additional 50 mg be taken only in the
morning. After 5 days on this dosage, I was to get another blood draw for a Dilantin
level check. Dr. Alkaitis also wanted me to get an EEG. The night before the EEG,
I was
to limit my sleep to half of my usual number of hours.
Friday, December 14 2001
In response to gently pinging Duke a few times, I received another phone call from Dr.
Friedman's office. I was told the delay was due to the pathology lab requesting another
"block" from the hospital where my surgery was performed. The act of shipping
the pathology block to Duke resulted in a delay of several days. I was told the block had
arrived and they were expecting a final report on the pathology today. I was then told
Dr. Friedman would be calling me in the evening.
Tuesday, December 18, 2001
At around 9:40PM, I received a call from Dr. Friedman. Dr. Friedman explained that
the pathology report came back as a low grade tumor. However, the lab saw certain
characteristics that led them to believe the tumor may behave like a high grade tumor. (If
it looks like a puppy but acts like a pit bull, treat it like a pit bull.) He said if
I were in [Duke's] program, they'd want to do a PET scan and closely monitor the tumor.
I mentioned the findings of the pathology report I'd gotten from Memorial Sloan-Kettering
indicated "the level of nuclear atypism exceeds the expected
for" a low grade glioma. I asked if this was basically what Duke was
saying and Dr. Friedman
said yes. I explained my next MRI was scheduled for February 4th and asked if
I should
visit Duke before or after that date. I was told to just visit afterwards.
January 2002
Saturday, January 5, 2002
At 7:00AM, after only getting 4 hours of sleep the night before (as
requested), I was given an EEG examine. Including the preparation time, when the tech hooks up all the electrodes to
my head, the test
takes about an hour.
Monday, January 7, 2002
I meet with Jacquelyn Stern, a nutritionist. I explained to her the
various changes I've made to my diet, which have resulted in my shedding 20
lbs of excess weight since October. She advises me on those areas where my current diet may be lacking in the major food groups and makes several other
minor suggestions. She does not make any dietary, vitamin or supplementary
suggestions regarding my brain tumor.
Wednesday, January 9, 2002
Dr. Alkaitis called me to inform me the results of my EEG examine on
Saturday were normal. I asked, "Normal for a brain tumor patient or
normal like everybody else?" Dr. Alkaitis said, "Normal like
everybody else. There was no evidence of seizure activity."
Thursday, January 31, 2002
I meet with Dr. Ariane Cometa, a holistic family medical doctor. She
recommends various dietary supplements falling into four main categories:
cellular support, adrenal gland support, antioxidants and essential fatty
acids. She would like me to return for a follow-up visit in March.
February 2002
Monday, February 4, 2002
I got another periodic MRI, the 3rd since my surgery last August. The
conclusion of the radiology report states the following: "There is a
lesser volume of enhancing tissue noted at the site of the operative bed
compared to a previous study of October 11, 2001, suggesting that these
changes may be postoperative and/or post-radiotherapeutic in nature. However,
the presence of a focus of residual tumor would be difficult to exclude.
Interval development of chronic right frontal and ethmoid sinusitis."
Tuesday, February 5, 2002
I meet with my neurosurgeon to discuss my latest MRI. Dr. Duckers
recommends I remain on the "wait-n-see" protocol. He told me his choice would be to avoid any type of focused radiation as long as
possible, preferring radiosurgery should it become a viable option in the
future. (The Annapolis area is getting a Novalis later this year.) He said he
was hoping I could avoid treatment until the Novalis came online, though he
thought it would likely be "years and years" before I required
further treatment. He brought up the idea of my going to UCLA to receive
Novalis treatments, but saw no reason to do so based on how well I'm doing
clinically and what he saw on the films. He invited Debbie and me to the
"tumor conference" held on the last Tuesday of each month to hear my
case discussed among a collection of local doctors in various disciplines. I
also meet with my neurologist. Dr. Alkaitis recommends a change in
anti-seizure medication from Dilantin to Depakote. He also informs me that I should not be driving until
my seizures are under control by medication. For
more information about this appointment, see the Symptoms
page.
Wednesday, February 6, 2002
I meet with my radiation oncologist, Dr. Torano. The appointment is mostly
a formality. Dr. Torano reviews my latest MRI and radiology report. He
continues to recommend I stay with the "wait-n-see" approach
and get my next MRI in May. He also gives me a copy of an interim analysis
from a European randomized
trial on the efficacy of radiotherapy for low grade gliomas.
Friday, February 8, 2002
Debbie and I meet with Dr. Henry Friedman at The Brain Tumor Center at
Duke.
Given my age, clinical status and diagnosis, Dr. Friedman recommended I stay with the "wait-n-see" approach. Should the tumor show any sign
of progression in the future, either clinically or by some noticeable change
on an MRI, he told us Duke's first recommendation would be to offer me whatever chemotherapy they were having the best response with at that time. In
Dr. Friedman's opinion, my surgery was nowhere near a "gross total
resection". He said it was a "good" resection and estimated the
amount of resection at 50%. The rest of the tumor he said was too diffuse for
resection. Further, Dr. Friedman said the Duke lab indicated that
pathologically I had a benign tumor (low grade glioma) but biologically it
might behave like a malignant tumor ("The level of hypercellularity, and
pleomorphism in conjunction with a KI-67 labeling index indicates this tumor
may behave aggressively."). Finally, Dr. Friedman strongly, and with what
we felt was sincere care for my well-being, suggested I join a program with
a major brain tumor center (Duke, MDA or UCSF). He told me he didn't care who
it was, but hoped it would be with Duke. He said I probably shouldn't wait
too long to decide because the program at Duke tends to fill up quickly.
Tuesday, February 26, 2002
Debbie and I attend the monthly "tumor conference" to
hear my case discussed among local doctors of various disciplines. Both my neurosurgeon and
my neurologist were in attendance, along with the hospital
pathologist who'd written the original report on my tumor. I was also
introduced to Dr. Kerry Thompson, a neuro-radiologist, who was the primary
doctor discussing my MRI films to the group. This was the first time I had witnessed the presentation of
my case before a multi-disciplinary group
of doctors. The experience was extremely informative and interesting. The
group continued to support the "wait-n-see" approach over other
forms of conventional treatment at this time. Debbie and I left the meeting
with renewed positive feelings about the future. Dr. Ducker walked us out and
explained he'd seen the report from Duke sent by Dr. Friedman. He assured us
his feelings would not be hurt if we decided to join the Duke program and we
should decide whatever made us comfortable. We appreciated his
candor, thanked him and went up to his office to get a copy of the Duke report
for our own records. The report was mostly general information until we
read this statement: "Furthermore there has been an obvious 70% resection
of tumor." Evidently when I'd first sent my scans to Duke in early
December, Dr. Friedman had made some notes on the amount of tumor resected
based on those scans. Debbie said she remembered him mentioning the "notes he
had upstairs" when we asked him about the resection and ball-parked the
number at 50%. We just gained another 20%. ;-)
Wednesday, February 27, 2002
I meet with Dr. Joydeep Som, an Ear, Nose and Throat physician to discuss
treatment options for the chronic sinusitis noted in the radiology report of
my most recent MRI. Dr. Som suggested using a nasal spray (two puffs in each
nostril, once a day) to help clear up the sinusitis. I also suffer from
seasonal allergies and a mild case of asthma. For years I've been taking a
daily pill to alleviate my allergy symptoms. I was currently taking Claritin-D
24-hour. Dr. Som explained he'd like to get me off the decongestant and get me
on one of the more powerful allergy medicines. He thought using the nasal
spray (Nasonex) I would find less of a need for a decongestant. I should begin
using the Nasonex and keep taking my Claritin for seven days. After seven
days, I should switch to the new allergy medicine, Zyrtec. (Update posted on
March 10, 2002 - I've been using the nasal spray for about 10 days now and my
nasal passages for the most part have never felt more clear.)
March 2002
Friday, March 22, 2002
Debbie and I meet with Dr. Selonick for a regular visit. We discuss with him
the results of our meeting with Dr. Henry Friedman at The Brain Tumor Center at
Duke. He said as long as my condition doesn't change, he doesn't need to see
me again for another six months.
April 2002
Sunday, April 7, 2002
Debbie and
I meet with Dr. Kerry Thompson for a short consultation. Dr. Thompson is the
neuro-radiologist who described my scans during the local tumor conference we
attended the end of February. Dr. Thompson answered all our questions with
what I felt was a great deal of compassion and intelligence (backed up by his
years of experience). Based on a question I asked, he recommended an
additional procedure be done during my next MRI. I believe the procedure is
called an MRI-SPECT.
May 2002
Thursday, May 16, 2002
This was the day I was supposed to get my nine month post-op MRI scan.
Unfortunately, I ended up scheduling the MRI at a facility that was unable to
perform the "other" procedure I'd previously discussed with Dr.
Thompson. It turns out the procedure he was talking about was not MRI-SPECT
but actually two procedures (well, two additional images if you want to get
technical) known as axial diffusion and perfusion. I ended up rescheduling my
MRI for Monday, May 20. (It turns out MRI-SPECT can't be done at any of the
Annapolis area MRI facilities. You must go to Johns Hopkins Hospital
to have
that procedure performed.)
Monday, May 20, 2002
I got my nine month post diagnosis / surgery MRI scan. In addition to the
standard MRI of the brain with contrast, I also had axial diffusion and
perfusion images done.
Tuesday, May 21, 2002
Debbie and I meet with my neurosurgeon to discuss the results of my MRI. The
written report from the radiologist is not ready but Dr. Ducker eyeballs the
scans, compares them with the previous one and concludes that the scan is
"clean". He continues to recommend the "wait-n-see"
approach saying, "I'm not gonna do anything to 'ya if you keep walking in
here looking and acting so well." He calls back the next day to indicate
he's conferred with the radiologist and they are in agreement with each other that the scan is
indeed "clean".
Friday, May 31, 2002
Debbie and I meet with my neurologist to discuss my seizure activity,
which still are not under control and he recommends another increase in my
Depakote dosage. For
more information about this appointment, see the Symptoms
page.
June 2002
Monday, June 3, 2002
I sent my latest MRI scans down to The Brain Tumor Center at
Duke for review.
Wednesday, June 5, 2002
I received a phone call from The Brain Tumor Center at
Duke informing me Dr.
Jennifer Quinn had reviewed my MRI scans and said they showed "stable
disease".
August 2002
Monday, August 5, 2002
I got my one year post diagnosis / surgery MRI scan. In addition to the
standard MRI of the brain with contrast, I also had axial diffusion and
perfusion images done.
Monday, August 12, 2002
Debbie and I meet with my neurosurgeon to discuss the results of my MRI. In
his words, "You're fine and you are definitely not on my worry list. Go
home and enjoy yourself." He continues to recommend the wait-n-see
approach. We were given a copy of the radiology report, which--other than some
medical CYA (cover your a**) lingo--pretty much said the same thing. He
recommended getting
another scan in six months but we told him we were going to Duke tomorrow and
would see what they had to say. He said, "No problem".
Wednesday, August 14, 2002
Debbie and I went to The Brain Tumor Center at
Duke for my six month visit where we met with Dr. David Reardon who
confirmed everything the local doctors told us and they were in agreement with
continuing with the "wait-n-see" protocol. Furthermore, the doctors at
Duke told us it was their recommendation that with a year of stable MRIs
behind me they felt it was safe to widen the MRI schedule from every three
months to every four months. During my examination by Dr. Reardon, he
performed some basic memory and cognitive tests on me (most of them I passed,
a couple of them I didn't). Based on this, he kindly suggested I consider taking a
neuropsychological exam so we might have a baseline should things begin to
change somewhere down the road.
September
2002
Wednesday, September 11, 2002
I met with Dr. Alkaitis, my neurologist, to discuss my seizures and for a
regular checkup. He did not recommend a change in medication at this time
opting to "let it ride" noting that my seizure activity has (in his
opinion) been decreasing in frequency over the past several months.
November 2002
Thursday, November 14, 2002
I will be taking my neuropsychological exam.
December 2002
First Week of December, 2002
I will be getting my 16 month post diagnosis / surgery MRI scan.
Wednesday, December 11, 2002
I will be returning to The Brain Tumor Center at
Duke for another regular checkup.
February 2003
Tuesday, February 4, 2003
I haven't updated this page in a very long time and I'm probably not going
to have much time do so in the future. I started working one day a week back
in August and increased it to three days a week in November. Needless to say,
I'm once again a fairly busy camper. I created a Brief
Chronology page that I'm updating when "major" events occur. You
should consider this a dead page and refer to that page in the future.
Finally, though I mention being a fairly busy camper, please don't
hesitate to contact me by email using the link below. I am NEVER to busy to
respond to email generated by this site (unless it's spam).
[ Top of
Page ]