Diagnosis: Grade 2 Astrocytoma, 1996; Grade 4 Glioblastoma Multiforme, 2000
******** Tom B.: MY BIO ********
Last Updated: 1/24/02
The first clue came on July 4th, 1996, when my son Chris and I were on
top of Mount Ontario, 9000 feet high, overlooking the Los Angeles basin
with its 40 fireworks displays. We were motionless and cold for half an
hour, and when the displays were over, my right leg would not move.
Chris helped me walk back to the tents; I thought the leg was just numb
from the cold. Two weeks later, we were backpacking in some other
mountains and the same thing happened. One month later, my wife, Carol,
thought I was dreaming about running when she noticed my leg wiggling in
the night.
On October 15th I awoke to a paramedic holding me down, saying "No, Tom,
you're not going to die." I had just had a grand mal seizure. The next
thing I remember is being in a big white noisy machine. Then I was in a
hospital bed being told that I had a brain tumor. The room was spinning
from anti-seizure drugs. The doctor thought I had an astrocytoma grade
two tumor in the parietal part of the brain between the sensory and
motor areas. It was on the left side, golf ball size but diffuse. It
all seemed like a bad dream. All you can say is "where do we go from
here?" Family and friends really helped me cope. Carol was great
helping out; she lived with me in the hospital and once corrected the
doctors with my Dilantin dose. Then the room stopped spinning.
My fourth day in the hospital I developed a life-threatening blood clot
in the lung. This often happens to brain tumor patients for some
reason. An incompetent temporary worker put me through more pain than I
can remember. To block any more clots from reaching the lung I had an
operation to put in a Greenfield vena cava filter. The surgeon said I
had a one-percent chance of dying from the procedure, but at this point
that didn't seem like too much. After 10 more long days I went home to
my boys, Chris and Nick, my sister Beckie, friends, and flowers. Trees
looked wonderful. I had sweats; my body still hadn't controlled its
temperature. I needed help taking a shower and needed a walker to go as
far as I could which was my next-door neighbor's driveway. My oldest
son Mike surprised me by coming home from the Navy over the Veteran's
Day weekend.
In late November I had a needle biopsy to determine what kind of tumor
it was. Heavily sedated, I remember having a seizure while the needle
was in there, and the doctor trying to calm everybody. The pathology
report called it suspicious for (doctor-speak for probably) low-grade
glioma. I also had a functional MRI at UCLA. It was interesting but I
think the data was too noisy to show anything. The doctors, however,
all said it showed the tumor was right on the motor strip. By this time
I'd gone from a walker to a cane to walking slowly with a slight limp.
I started to walk as much as I could. We also joined a brain tumor
support group nearby and this was a great help, both for support and for
knowledge.
What next? Carol found valuable information on websites and through the
BRAINTMR listserv on the Internet. Because I have a slow-growing tumor,
we had the time to get many doctors' opinions. Basically most said not
to do surgery since they felt that they couldn't get more than 60% of
the tumor at best (not the 80% needed to make the operation
worthwhile). It was not worth the real possibility of paralyzing me.
For astrocytomas, surgery isn't necessarily a full cure anyway due to
individual dispersed tumor cells. Radiosurgery, which we originally had
hoped for, had the same problems as surgery. Chemotherapy is not
commonly believed to be effective on low-grade tumors.
All the doctors were for "radiation therapy," however. Also, I had read
an article in a medical journal about your chances of living being twice
as good after five years with the radiation than without. Radiation was
done in Los Angeles, a one-hour drive away. I got 5400 rads. Carol
drove me five days a week for six weeks. The radiation was focused on
the tumor, so three-quarters of my brain was not affected much. Now we
hear that the new Peacock system is even better at focusing the
radiation. I felt good for all the radiation treatments until days 29
and 30 when I hit the wall. For weeks after this I was very weak. I
had tried to visualize the tumor getting smaller, and it seemed to
shrink, but it's hard to see for sure because of the swelling and dead
tissue around the tumor. One very good thing about all this is that we
met a counselor who helped us out more than I can tell you. We still
see her today
One unfortunate thing about the radiation was that it affected my
short-term memory and sense of time to some degree. Also, seizures were
much more frequent after radiation. I've tried Dilantin, Tegretol,
Topomax, Lamictal, Gabitril, Phenobarbital (you want to sleep, try that
one!) and Neurontin to stop them. Different things set off seizures:
loud noises, thinking about mistakes, being tired. I was hard to live
with. My family was very understanding. I ruined a camping trip by
having a seizure every half-hour all night long, then going to the
hospital. Much later, testing limits of drugs, I had a toxic reaction.
I felt like I was out of my body and was extremely agitated. The only
thing that calmed me down was looking at Jupiter through the telescope!
For the last year I have been taking the same drugs, 700 milligrams of
Tegretol and 3600 milligrams of Neurontin. I get one or two motor
seizures per week, lasting for one or two minutes each; and they are
fairly gentle. I have not been able to drive, though, since the tumor
was discovered. With Beckie's influence I've done a lot of outside work,
which has been very beneficial.
A very close friend of ours recently died of brain cancer; he was a
co-worker. We had a "cluster" of four brain tumors at the facility
where I worked.
So what am I doing now that things have calmed down? I am on long-term
disability from my geophysics job. I've been doing Tai Chi and been
drinking Ling Chi tea off and on. I have been volunteering at a local
Arboretum. I've occasionally tutored college math. My birding friend
Brian and I decided to put me on what we call the "Snetsinger diet".
Phoebe Snetsinger had six months to live and decided to see all the
birds that she could. Six months came and went and she kept on bird
watching; ten years later she has a world record number of birds. So we
are trying this "diet" out for ourselves. Once again, I feel very
blessed by my family and friends.
A few good links for brain tumors in general are:
Dr. Kelly
Al Musella
Jim Kenzig's BTLinks site
Steve DePesa
Brenda Burey
Click here if you would like to see a copy of my MRI!
Update added 1/24/02
In December 2000, I discovered an inoperable GBM in the thalamus. I had a
biopsy done at UCSF, followed by 33 sessions of radiation with the Novalis
system at UCLA with concurrent Thalidomide (worked up to 800 mg/day) in
March and April. MRIs since then have shown both tumors to be stable. That
is such good news because the GBM had been growing quickly before the
radiation.
Along with daily high-dose tamoxifen (160 mg), I began monthly carboplatin
in June and just completed my 8th round. The main side effects are a lot of
fatigue and some nausea, but the nausea has been mostly taken care of with
Zofran combined with Reglan on the 3-4 days after the chemo.
Our travel in 2001 was curtailed by the treatments but we did manage to go
visit my family in New England in late summer and then in November we went
to Hawaii to see our eldest son who is a submariner in the Navy, and then on
to Japan to visit our middle son, who works as a translator there. Those
were wonderful trips!
I hope to do more birdwatching in 2002. And I am grateful to Dr. Cloughesy,
the neuro-oncologist at UCLA, who has advised me so well this past year.
