Joseph Vitale
West River, MD 20778
December 11, 2001
To Anyone Willing to Listen,
On Saturday, August 18, of this year, my wife and I were visiting
out-of-state with my mother and grandfather. It was a typical gathering of family members
with the typical conversations. We were discussing the general good health of my
87-year-old grandfather. His mother lived well into her nineties and my grandfather seems
destined to do the same. I remarked that I’ve always felt I was destined to be just
like them and live well into my nineties. We also talked about my uncle who’d
suffered a stroke this past summer. His recovery was progressing very well though he still
had some minor deficits. It was during the conversation about my uncle that I made the
prophetic statement, "Your whole life can change in an instant. You just never
know." The next morning, my life, and the lives of my wife and our family would never
be the same again.
On Sunday, August 19, I woke up with small, involuntary twitches in my
right ankle and wrist. Four hours later, I received the startling diagnosis of a brain
tumor. On Monday, August 20, I was discharged from the hospital so we could return to our
home in West River, MD. My wife drove. Tuesday, August 21, we met with a neurosurgeon
recommended by our regular doctor. The neurosurgeon took one look at my MRI scans and
said, "There’s goes Thursday." On Wednesday, August 22, CT scans of my
chest, abdomen and pelvis were taken showing the brain to be the primary location of the
tumor, meaning it had not spread there from another location in the body. On Thursday,
August 23, I had brain surgery to remove as much of the tumor as possible. Three days
later, on Sunday, August 26, I was discharged from the hospital. Two weeks after that, on
Monday, September 10, I went back to work, physically. Mentally and emotionally is another
story.
It’s a lot to go through in such a short period, isn’t it? To
put yourself in my shoes, imagine being thrust into the driver’s seat of a
convertible with its roof down. The car is driving extremely fast on a set of switchbacks
through an icy mountain pass. Now imagine you’re not the one controlling the car
because it’s driving on it’s own. Finally, you’re wearing a blindfold and
you don’t have your seatbelt on. Yet strangely, you don’t feel afraid. The
reason you don’t feel afraid is you haven’t been able to feel anything since
being placed in the car. You’re numb from the initial shock and your mind and body
have been on automatic pilot ever since. If you can picture all this, you’re still
not in my shoes unless you’ve also received a diagnosis of a brain tumor or some
other chronic or terminal disease such as cancer.
My name is Joe Vitale. I’m 36 years old, married to a wonderful
woman named Debbie, and fortunately, still able to earn my living as a software engineer.
Since August 19, 2001, I’m also a brain tumor survivor. I use the word survivor
instead of patient not because my car ride is over, far from it, but because anyone living
with the diagnosis of a brain tumor is by definition surviving. When you think of the word
survivor, it conjures up images of strength, courage and hope. In contrast, what does the
word patient make you think of?
During the two weeks I spent at home recuperating from surgery, the
pathology report came in. The report stated the following diagnosis: a WHO grade 2
astrocytoma (astro-sigh-toe-ma). The ‘WHO’ stood for the World Health
Organization and the two indicated my tumor was a low grade, slow growing tumor. The
pathology report had confirmed what all my doctors had suspected. I had brain cancer. Back
in the convertible, the blindfold was ripped off my face and the numbness was totally
gone. Feelings of fear, worry, sadness and lack of control quickly began to take root.
I looked in the seat next to me and took great comfort in seeing my
wife. She told me she would be there with me the entire trip and would never leave my
side. I asked her to promise me if the car looked like it was about to go over a cliff,
she would jump out. She hesitated with both sadness and fear in her eyes. Promise me, I
quietly but forcefully repeated. I needed to know she would be okay if the car went over a
cliff. She looked me in the eye and told me she promised, but then added that it
wouldn’t even be necessary, as we’d get control of the car before the trip was
over.
Next, I looked in the rearview mirror and my heart skipped a beat. All
my doctors were sitting back there! I thought, "What are you guys doing in the back?
Shouldn’t you be up here in the front trying to take control of this car?" Then
I remembered back to when I was first dropped into the car. They didn’t have any
definitive answers about how best to get me out. Heck, they couldn’t even tell me how
I got there in the first place. I decided immediately to be the one in the driver’s
seat. I would listen to the advice and recommendations from these "back seat"
drivers but I alone would have the final say on how best to try to regain control of the
car.
I now needed a crash course on brain tumors and I needed it fast. So I
did what every other person with a computer would do, I surfed the Web. The information I
found was, and is, very depressing. Oh, not for the reason you’re probably thinking,
though that aspect of the disease is definitely depressing. No, the depressing part is how
little the medical community actually knows about brain tumors. I always knew doctors were
said to be part of a medical practice. I just never realized how much they were actually
"practicing" medicine!
Here’s what I learned. Brain tumors do not exercise age, sex or
race discrimination. Brain tumors are either operable or inoperable. If operable, there is
little to no chance all of the cancer cells will be removed during surgery. Since there
are usually cancer cells left behind, those cells are more than likely to recur at some
point in the future with new tumor growth. Furthermore, there’s a chance the cells
will mutate and become more aggressive somewhere down the road.
Continuing, brain tumors are classified into four different grades of
malignancy. The higher the grade, the more malignant the tumor. Grades 1-2 are considered
low grade; grades 3-4 are high. Radiation therapy is usually used when treating a grade
3-4 tumor. However, note that the brain can only safely receive a finite amount of
radiation. Chemotherapy treatments vary in their effectiveness with brain tumors. You see,
the body has a built-in defense mechanism called the blood-brain barrier that protects the
brain from harmful substances. The same barrier used to protect the brain also prevents
the standard chemotherapy treatments from working well.
Brain tumors are still considered incurable, there is no single
treatment that works all the time for everybody. Doctors use the various treatments at
their disposal to "prolong life" or "maintain the current quality of
life". The picture looks rather bleak but there are some rays of sunshine poking
through the dark clouds. There are many long-term survivors of brain tumors of every
grade. They are out there if you go looking for them and they are usually more than happy
to talk about their situation. In addition, the medical advances being made these days in
the treatment of brain tumors is simply amazing and gives one hope that a cure for this
horrible disease is just around the corner. It’s just a matter of time.
For better or worse, my crash course on brain tumors was slowly ending.
I would forever have to be vigilant but the initial learning curve that goes along with a
diagnosis of a brain tumor would soon end. Back in the convertible, the roof was now up
but the windows were still down. I had some sense of comfort but could still hear the wind
blowing outside. I also had my hands on the steering wheel. The car was still driving on
its own but at least I had some sense of control, no matter how false it may prove to be.
Sneaking a quick look in the backseat, I noticed it was very cramped
back there due to all the experts I’d consulted during my crash course. I shook my
head and laughed at the irony. The best the experts could offer me was to simply do
nothing. They told me the standard protocol for someone in my situation (low grade tumor,
good surgical resection, age…) is the "wait-n-see" approach. You get a MRI
every 3 months and then, you wait and see. You wait and see if or when the tumor grows
back. You wait and see if or when it mutates to a higher grade. Hardly the response I
wanted, as in my opinion there’s nothing worse than knowing about a problem and not
being able to proactively fix it.
My wife and I are still in the car. Moreover, every brain tumor
survivor and their caregivers are still in their cars but at least, luckily, we’re
all on the same road together. We take great comfort in knowing there are others on this
road and that we are not alone. We will always be in our car and on this road until a
definitive cure for brain tumors is found. Our attempt at making others more aware of this
terrible disease is simply so all brain tumor survivors see more folks standing alongside
the road for us to wave and say hello to as we drive by.
Finally, in lieu of my brain tumor diagnosis I feel compelled to update
my thoughts on my longevity. I mean, let's face it, can anyone at my age with a brain
tumor reasonably expect to live another 60 years? I don't deny there are days when I'm
scared beyond comprehension about what the future may hold in store for me. However since
there's no such thing as false hope and there's nothing better than a positive attitude,
my answer is not only is it reasonable to expect to live another 60 years, it's necessary.
I thank you for listening.
Sincerely,
Joe (Vitale)