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Fighting Chance
 Fill
in the Blanks
by A. W. Sockwell
Imagine hearing the word "remission" four months after having
seized during substitutions at an over 35 men’s indoor soccer game. The journey
from one to the other is filled with blank spaces and emotions that are almost
impossible to describe.
To begin with, you need to know who I am. Wayne Sockwell: a graphic designer by
trade, and a middle-aged athlete with aspirations to play competitive amateur
soccer until I reach the ripe old age of 60. Born in 1946, I have literally
spent my entire life dodging doctors of all types. I would enter a doctor’s
office for a physical, and check ‘no’ in answer to almost every question posed
(except of course for penicillin, to which my mother claims I am allergic). I
have never had an operation, broken bone or anything worse than being stitched
up after an occasional elbow during a soccer match.
And then comes the seizure, a ride in a Richardson Fire Department MICU to
Baylor/Richardson Hospital and into the system. For the next four days I
received every kind of test imaginable, from MRIs to CAT scans, to simple blood
tests. What a nightmare.
(For the moment, I need to take a short side trip. If you are not familiar with
the soccer community, you need to know that it is filled not only with players
of a fiercely competitive nature, but of people from countries around the world
that express their love openly and without hesitation. This means that 100+
players and their wives came to my hospital room to express their good wishes
and hopes for a speedy recovery. Add to this, friends and family of perhaps
another 100+, and you get a picture of the bedlam surrounding my room. There is
no question that love, caring and prayers can make all the difference in
recovery from cancer, or any other type of illness.)
Mentioning ‘the next four days’ is done purposefully. Except for a few
reconstructed visits from close friends, those days are blank. My next truly
lucid moment came after surgery when Dr. Edward Gilbert and his trusty sidekick,
nurse Michelle Karlin, came into my room and announced that while the resection
had gone extremely well, the tumor was indeed cancerous – glioblastoma
multiforme – a grade four cancer. He counseled me that we had to treat the tumor
very aggressively, with both radiation and chemotherapy. Needless to say I was
in a daze, but did manage to express a philosophy that has seemed to make all
the difference – I told him I planned to be the poster boy for glioblastoma –
believing that if anyone could beat the cancer it would be me.
(Again, I need to take a slight turn in the road. All the personal bravery in
the world isn’t worth two cents without support. In my case, I had the greatest
cheerleader you could find – short of Lance Armstrong’s mother – my wife Linda.
She took on the job of ‘poster boy’ manager and has never looked back. More
about her later.)
Our next step was a lengthy conversation with Dr. Virginia Stark-Vance. She came
to our room later that night and mapped-out two different chemo strategies that
were recommended and available to me based on a European-developed-and-tested
drug branded Temodar. She assured us that she and Dr. Gilbert were part of a
team, working together closely to get maximum results from a combination of
focused radiation treatments and Temodar. Linda was impressed. So impressed that
she and Dr. Stark-Vance carried on a conversation about the pluses and minuses
of different treatments well into the night. I was somewhere out in the zone.
Now comes the doubt. In my circle of friends, you’ll find every loving
individual possible – and each with an opinion and a story about cancer. Linda
and I heard that Richardson/Baylor Hospital was the place to treat cancer – then
we heard that it wasn’t. We were told that I needed to go to China for
treatment. We were told so many things our heads were literally spinning. So we
called in some back-up. A close friend suggested that we get a second opinion
from a well-respected physician with whom she worked – Dr. Karen Fink. My
assistant at the studio, through friends, arranged for another opinion from Dr.
Alfred Jung, head neuro-oncologist for M. D. Anderson in Houston. And to make
what could be a long story short, we found agreement. Each of the physicians
reviewed my "film" and independently concurred that the protocol of radiation
and chemotherapy suggested by our team at Baylor/Richard Hospital was the way to
go – safe, but aggressive.
Here we were, two weeks into the game, with a solid plan. I was to get 42 days
of Temodar chemotherapy with a concurrent treatment of radiation. The plan was
fairly simple from my point of view – I began radiation on a Thursday and that
same day began taking Temodar (a type of chemotherapy put into capsule form to
be taken orally). My specific plan called for 42 consecutive days of chemo, with
radiation treatments being administered Monday through Friday. When I finished
chemotherapy, the radiation treatments would end, except for a little bonus
called the Stereotactic Boost (more about the Boost later).
Because I work for myself, I was fortunate to be able to schedule my hours
around treatment. But here again, lots of family support came into play – from
family, friends and neighbors taking me to work (remember I am not allowed to
drive) and more family getting me from place to place. The daily mechanics of
cancer (not to mention the ability to pay for the incredibly expensive
treatment) are extremely difficult to overcome, and unfortunately they come with
the territory.
However, I felt that I needed a personal plan, a contribution that only I would
be able to make. What could I do to give me an edge, a leg up? I decided that
what I needed to do was build on who I was and hope that it would make a
difference. Fitness has been important to me since I quit smoking 19 years ago
and began playing soccer, both indoor and out. I began a simple
vitamin/supplement plan. I lost weight with the help of a personal trainer
(during the last three years), changed my eating habits and felt as fit as
possible for a man of my age. Continuing that "attitude" was going to be my
contribution to the team.
For years I spent my life trying to balance work with pleasure (usually work
won). And I decided to try the same approach in fighting cancer…a balanced,
triangular approach to fighting cancer with the spiritual on one corner,
reactive medicine that treats the causes on another and proactive
vitamins/supplements/exercise taking over the last spot. While this is nothing
new, it is meant to spotlight the need for balance. Without all three, you
seriously hurt your chances for recovery.
Please remember that brain surgery takes a toll on you mentally and physically.
I was literally a ‘space cadet.’ I was unable to process sequential lines of
thought, much less parallel/multiple tasks. I was distracted by music or any
other ‘filler’ sounds. Math skills disappeared. My vocabulary and short-term
memory were operating at well below par. I was, as I so fondly told friends,
just one step away from being the village idiot. But I knew that with patience,
my mental and verbal skills would come back. Unfortunately, how far back is
still in question.
During the early stages of recovering from surgery I told Linda that I had to
return to work. I had to know whether I could still write a check, keystroke
type or do electronic photo retouching. The emotional questions took first
precedent.
But I also had to retain the ‘attitude’ that I promised myself would be my
contribution to fighting cancer. So when treatment first began, I fought the
urge to nap. Every afternoon following radiation, a nap always looked tempting.
Instead, I would put on my headphones and walk to energize myself. Sometimes I
would walk a half-mile, sometimes a mile or more. But the result was added
energy, and establishing a good pattern to my treatment. About 20 days into
treatment I decided that walking just wasn’t enough, so I borrowed a bicycle and
committed myself to riding at least once a week for three miles. I also used
light free- weights (15 pounds each) to do short exercise sets. And then of
course, came the real test. Thirty days into treatment I coerced my team into
scheduling a practice for light skills training – with one exception – no balls
would be played above the shoulders. For an hour and fifteen minutes I proved to
myself that while I got tired, I could still play. My coordination was
reasonably in tact and with a little bit of exercise I could regain my fitness.
However, the real value of the practice was much greater. My team gave me the
confidence I needed to keep going, and to believe in myself.
Another ‘attitude’ adjustment for me was the baseball cap. When I first returned
to the studio I wore a baseball cap indoors, embarrassed because of the surgical
scar and partially shaved head. Two weeks after the surgery I decided to get a
close-cropped haircut and forget the baseball cap. This was a good plan until
three days later while shampooing my hair I looked at the drain to discover half
of my newly cut hair had finally succumbed to the radiation and was making its
way down the drain. A trip to the barber for a buzz, and my problem was solved.
Just before all the radiation and chemotherapy began, I was hit with a hard
reality. Vitamins were out. It seems that the antioxidants found in many
vitamins would reverse the effectiveness of the radiation. Dr. Gilbert said that
by continuing my routine, I would be lessening the effectiveness of the
radiation. The antioxidants would counteract what he was attempting with the
radiation.
But now that radiation is complete, vitamins and supplements are back in the
picture. With the counsel of Dr. Stark-Vance I am beginning a program of
vitamins and supplements that should make a major difference in my energy level
and general health. This proactive measure is my way of adding an important step
in beating cancer.
Your mental health is just as important as your physical well-being. And of
course, family and soccer friends came with a ‘must read’ list. While still in
the hospital, a friend of my youngest son brought the first book, "Getting Well
Again" by Carl Simonton, M.D. Then an old teammate gifted me with Lance
Armstrong’s " Its Not About the Bike, My Journey Back to Life," and later, a
bedside pep talk from the author’s mother. Another coincidence came midway
through radiation; I was introduced to Dr. Simonton as he was visiting
Baylor/Richardson Cancer Center to review Dr. Gilbert’s latest radiation
protocols. Everything, and I mean everything that could put a positive spin on
my situation, gave me added energy and optimism.
At the end of radiation comes the steriotactic boost. A stereotactic boost is
fairly simple from a patient’s point of view. The physicians take a week’s worth
of radiation and focus it into the exact three-dimensional pattern of your tumor
bed. What this takes is a series of exacting measurements so that the good cells
aren’t cooked along with the bad. That’s where the ‘halo’ comes into play. It is
a metal ‘halo’ (tungsten) that is attached to your head using four setscrews.
It’s a hospital event (day surgery). You come in to the hospital in the morning,
have the halo attached, get a CAT scan and then go in for the boost. Total time,
about eight hours. However, there is a catch to this little procedure, the
decompression headache. And do I mean headache. Ouch. That my friend is why they
invented painkillers.
Earlier I wrote about the extreme difficulty surrounding the mechanics of
cancer. Transportation issues, planning, medications, payments, the list is
endless. But someone has to handle that list. In my case that ‘someone’ is
Linda. Her set of skills is perfect for the task. I would recommend to any
‘partner’ faced with the task of managing a cancer patient, contact Linda. She’s
been through the fire and come up a winner. She can be reached via email at
lsockwell@swissave.com.
Did I have low spots? Absolutely. Did I let them beat me down? Not a chance. Am
I optimistic about the future? Of course.
Life has changed for me. But until I get a history of two or three years keeping
glioblastoma in remission, I won’t be making any long-term plans. But plan I
will.
At this writing, it is the beginning of the new year and my plans are simple. On
reasonably warm days I will continue to walk and ride my bike. I will also
practice with my team this January in preparation for the coming Spring ’02
season that begins in February. Life will have a touch of normalcy returning.
If you’re not spiritual, you might want to skip this paragraph. Without
question, the body cannot heal without a healing of the spirit. I have for the
first time in my life sought the prayers of others, and have prayed for the
healing of friends and acquaintances burdened with circumstances far worse than
mine. I have repeated, "do not go gently into that dark night" what seems like a
million times. The prayer of Jabez is almost a morning mantra for Linda and
myself. Then there is Dan and his Bible. Dan tells me that there is a payoff
when someone witnesses a miracle. He says (with great confidence) that the
person witnessing the miracle is obligated to talk about it. That it is some
kind of debt he carries, to repay all the wonderful people who prayed for the
miracle and continue to pray. Well, I’m not too good at talking about miracles.
I’m afraid that by being over confident, the miracle will disappear. But I do
have someone very close to me that may have coined the perfect words, "We got
the great news last night...I want you to know that my family has been praying
for you every night and we have also been praying in my accountability group.
You have truly been blessed and you are a blessing to me personally. I have
great respect for you, and I have seen God's hand in this. Regardless of what
the future holds, your walk will touch others in ways you will never know."
Copyright 2002 A. W. Sockwell
If you have a story to share for
our Fighting Chance page
please E-mail us at
fc@dfw-neuronetwork.com.
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