Was this the Beginning?
Several years ago, I was
diagnosed as suffering from "acid reflux." This progressed to
a point to where it became difficult to swallow food. I could
begin a meal only to have food get stuck in my throat just below the
airway. You couldn't feel it and I wouldn't become aware of it
until it became completely blocked and either my own saliva or
whatever I was drinking began to back up. Sometimes it was
embarrassing to eat out because I would suddenly have to bolt from
the table or risk...well, we won't discuss that. Even with
this happening I was still being treated as suffering from "acid
reflux." Interestingly enough, I was told on more than one
occasion, and this began several years ago, that without proper
treatment the stomach acid reaching the lower throat could cause
cancer. I've had more than ample reason since then to think
back on those words.
One morning last year I woke up
and went into the bathroom. Bleary-eyed I turned on the tap
water and proceeded to dowse my head. Turning off the water I
raised myself up and looked up into the mirror. Now, I have to
tell you that I am blind in one eye and can't see out of the other.
If I were a millionaire it would be offensive if I did not dedicate
at least a building to a school of optometry. The Hope
Diamond probably took less work in its cutting and grinding than do
the lenses for my glasses. Which of course at the time I
wasn't wearing. Not, and for obviously good reasons, trusting
my eyes I went back into the bedroom to get my glasses.
Tee off time?
Returning to the bathroom, I
once more looked in the mirror and the glasses bore out the evidence
of what I thought I'd seen the first time. On the left side of
my throat, just below the jaw line I was apparently trying to grow a
second head, or at the least a golf ball which living near a golf
course is not entirely a useless thing. Now, I'm 51 and to be
honest I've never had something so foreign happen to me in all of my
years. It was a novelty that one can do without. I
initially considered trying to ignore it and carry on with my day
but it turned out to be much like a sore tooth, impossible to ignore
and equally impossible to leave alone. Frankly after an hour
or two I determined that this "thing" was not going anywhere on its
own so I decided to help it on its way by going to the doctor's.
One or Two Weeks?
A doctor saw me who asked
questions and who duly poked and prodded at this "appendage."
Apparently, not wishing to keep the experience of a voluntary victim
to himself he called in another doctor who asked essentially the
same questions, poked and prodded me some more and then they
conferred in that strange, mysterious language that apparently one
must spend years going to college to become proficient in. On
some unseen signal they both turned to face me and one of them
asked, "Does anyone in your family have or ever had
cancer"? Relieved I said no and gave a short
laugh. "Well," he went on, "you have an ear infection that has
drained down into the lymph node in the throat. We're going to
put you on antibiotics and in a week or two the swelling will be
gone." The ump made a baaaad call. If I knew then what I
know now I would have kicked some dirt on his feet and been happy at
being thrown out of the game.
Three Weeks Later...
I kept a very close eye on this
thing. It is a most unfortunate thing that in the world, first
appearances often mean everything whether its social or
business. Three weeks into my "week or two" this unwelcome
"guest" was not only still "visiting" but seemed to be putting on
weight. Another trip to the doctor resulted in another
question about cancer
and the family history and more antibiotics and an
anti-inflammatory. Definitely, I was assured by this member of
the white-coated brotherhood, another week.
Okay, I Know...No More Jokes...
Now, everyone has their own way
of dealing with bad news. Some laugh, some cry. Some
people prefer to be alone while others need their friends. Me?
As a rule, I like to think that I'm an optimist rather than a
pessimist. No one's life is ever exactly as they dreamed it
would be, unless you're George Dubya, but that doesn't mean that
whatever road you do wind up traveling on can't hold its own beauty
and wonders. My basic philosophy is that if something happens
and you can do something about it then you do. If you can't
then you hope for the best and don't worry about it. Find time
to give a small child a smile, share laughter with your friends, pet
a puppy, give a cat a good scratch; do any of these things and life
will be fine.
Now this is great advice to hand
out to other people but honestly it's hard to tell yourself this
when one of those white-coated wonders that we go through life
revering as god-like, tells you that "You" have
cancer. In layman's
terms what these words mean is, "You" are going to die. The
word "Cancer" is
something you hear daily and never in a positive context. And
when it's applied to you it definitely makes you step back for a
moment to reevaluate your thinking. Having what you thought
was an nasty ear infection turn into an even nastier terminal
disease is never conducive to maintaining a positive outlook on
I had not one but two
malignant. The "ear
infection" turned out to be a
located in the
lymph node itself.
lymph node was filled
fluid which proved to
be malignant and when
it was aspirated with a needle it filled in so fast that by that
evening you couldn't tell there had been any change. And I was
informed that although it shouldn't be happening, the
fluid from the
lymph node was
"sweating" through the node
and into the body. The second
tumor was a
6mm located in the
pharyngeal larynx. Further, neither of the two
found were the primary.
The primary has never
been found. While I don't smoke the
tumors removed were
squamous cell carcinoma.
Initially, I was told that if
surgery were necessary
it would take several months for scheduling. On a Thursday,
three weeks of being diagnosed I was taken into surgery. It
took two surgeons seven hours to perform a
radical neck dissection.
I lost almost everything on the
left side of my
neck. When they
removed the muscle that runs from behind the ear they left the stump
telling me they were hoping it would fill in any declivity as it
I was moved to
following surgery and
on Friday I was moved to a room. I checked myself out that day
and went home. On Monday I stopped by the office to assure
them I was alive before going back to see the doctor. Tuesday
morning I was back in the office. Now, I am by no means a superman
but like everyone else I work for a living and sick or not bills
don't get paid by themselves. I had been sliced from behind
the ear down to the collarbone and across the front to just below
the Adams Apple. A tube for drainage ran from the side of my
throat to a small bag which I pinned to the inside of my shirt.
I was running on massive amounts of Hydrocodone. (Great stuff
by the way. I highly recommend it when you havethe equivalent
of 200+ stitches in your throat which otherwise would feel like you just
had it ripped out).
Following surgery I began
Few people understand exactly what chemo-therapy is intended to do.
are weaker than your normal cells. The theory in
is that they poison you and do it continuously. The hope is
will die before you do. This is one of those things that if
you could live without it you definitely would. Nausea,
vomiting, fatigue, some really strange changes in taste and smell,
infection and diarrhea all within a matter of weeks. For
everyone who may have laughed at me behind my back for being fat I
want you to know that being fat probably saved me from a lot of
grief. I lost 30 pounds in 3 weeks.
I underwent 6 1/2 weeks of
radiation. The radiation
literally shredded my throat both inside and out. The skin on
the outside looked as if I had a really severe sun burn with even
the peeling skin having skin peeling off of it. I found that
speaking was a trial. A problem for someone whose job requires
they spend most of their day on a phone. My sense of taste
changed when the radiation burned off my taste buds. Oddly
enough, I couldn't stand any dairy or bakery product. Ice
cream, milk, donuts, bread, it didn't matter. Any of it tasted
as though I had taken a big spoon of Crisco and put it in my mouth.
I couldn't handle water or fruit juice. The only thing I could
drink for months was diet Coke. It was the only liquid I
couldn't taste. The only solid food I could handle was either
watermelon or cantaloupe and then only when cold. All and all
Eddie was a very sick
You hear that it's when you are
down that you find out who your friends are. I can honestly
say it's true. My best friend is the President of this
organization. You don't go through all of this without close
support and for me that was
Sherry. There were times I could barely stand and she was
there. When the pain was so bad I thought I was going to die,
she was there. When I was sure I could take no more she pushed
me to go that extra that I needed to. Honestly, I don't know
how I would have made it without her help. You can't ask for a
greater friend than she's been for me. And support came from
other, sometimes unexpected, sources as well. She teaches at a
very well known local college and the entire staff of her department
daily asked about me and sent me their well wishes for my health.
Someone emailed friends I have not spoken to for several years and
they spread it to others and there was an outpouring of support from
people that had been out of mind for some time. As I
mentioned, I returned to work immediately and my employer and my
co-workers did everything possible to make my life on the job
easier. These are some of the greatest people you could ever
wish to work with. When you are going through something like
this you need the support
of others and I have to tell you that the outpouring of
love I received both surprised and humbled me. I am unashamed
to say that thinking of it brings tears to my eyes.
I sincerely believe that if I
had known more about cancer
then possibly things might have turned out differently. Acid
reflux turns out to be a symptom of
While in the end I did not have
esophageal cancer if I
had known about the symptoms of it I would have insisted several
years ago for a more thorough examination and this may have been
caught much much earlier.
In dealing with the "ear
infection" I was told by one of the two surgeons who performed the
surgery that if I had not been so insistent and kept coming in to
have the "ear infection" checked out the tumor would have claimed my
life in a very short period of time. Hence, the reason for the
quick time between diagnosis and surgery. I would not have
made it through any delay. Now, given my own experience you would
think that sufficient to explain our decision to work to bring this
organization to life but that isn't it.
On the day my surgery was
performed, there was another man having surgery. His wife and
daughter were there. They had flown in and were staying in a
motel nearby. They couldn't afford either the flight or the
motel. They had gone heavily into their savings and with the
bread-winner of the family going under the knife there was no
guarantee he would be returning to work any time soon. But his
wife wanted to be there for her husband and his daughter wanted to
be there for her daddy. I believe he lost most if not all of
his lower intestine (cancer
again) but if support counted for anything towards getting well he
had it in his family.
radiation was done at a
different hospital, one of the best
cancer treatment centers in the
State of Florida and a
South Florida can be
proud of. In speaking to the staff I found that daily they saw
so many in for treatment who couldn't sometimes afford the basics of
life that they had all agreed to forego gifts to each other on
holidays choosing instead to donate the money to those patients in
need. One of the stories I was given for example was that of a
woman being treated for cancer.
She got her pay check, $500. However, she had to make her car
payment and the deductible for her medication was...you guessed it,
$500. She had to make the choice of either making the car
payment so she would have transportation for her treatment, or pay
for the medication she needed to get her through the
I met a man with
leukemia. He lives in
Homestead but must come to
chemo therapy. As long
as he continues to take the chemo therapy he lives. Without
it...well, you know. The
chemo leaves him weak,
fatigued, sick and it cost him his job. He can get
transportation to Miami to get his treatment but if the treatment
isn't finished before transportation closes then he has to take a
cab...at $125 one-way. The treatment leaves him too sick to
contemplate public transportation. Sometimes he skips
treatment because he doesn't have the money to guarantee a ride
A woman I met lost a beloved
uncle. For several years he suffered with stomach problems
before it became so severe he was forced to go to a doctor. He
was diagnosed with cancer and died 3 months later. He didn't
speak English and
didn't know where to look for information about his problem.
A little girl is suffering from
cancer. There was an event scheduled to help
benefit her. Sherry found it on the Internet and we made plans
to attend but on the day of the event we could no longer find the
information on it. We still don't know where that event was
In hospitals where I was treated
have support groups for cancer
patients but they are held at mid-day during the
week. There are a large number of us that work out of
necessity. We can't afford to take time off from work and lose
pay for things like support groups. The stories go on and on.
Until I went through this I had no idea how pervasive the problem
was. And I found the same themes repeated over and over.
Two things seem to continuously
come up. The first is the lack of information.
South Florida has one of the most diverse
populations in the United States.
There are over a dozen languages both written and spoken here.
I had trouble finding what I needed to know in
English. It was scattered all over the
Internet and frankly in some instances was hard to translate from
medical language to layman's terms I could understand. And I
am not uneducated. The people who live in
speak not only English
and Spanish but
Brazilian Portuguese and a
number of other languages for which information and assistance is
all but non existent. If someone has a condition they
have a question about; has a question about treatment; needs
to know where they can find support; wants information about after
care; or wishes to show their support for a cause such as breast
cancer; then they should have that information available. No
one, regardless of language or culture, should ever have to make a
decision that could mean the difference between life and death
without being informed about options and consequences.
There are a number of
support groups in
South Florida that
meet after work hours but they have no venue to let people know who
they are or where to contact them at. No
cancer patient or their family
should have to base a decision as to whether to seek treatment or
not on their financials. Transportation should not be an issue
nor should prescriptions. Whether a person is from
South Florida, the
Central America or
South America when the time
comes for decisions to be made then they should be based on need and
not from a lack of information or money. There are other
considerations we would like to address.
One person dies every minute of
cancer. In the time it took for me to write
over 200 people died.
And the deaths continue.
Research has increased
our knowledge about cancer
and has brought about new methods of
treatment that has served both to make
treatment easier to
handle and reduce deaths. Funding for their endeavors largely
comes from donations and contributions. Years ago I worked for
an outreach ministry. One of my people, an older man, was
diagnosed with pancreatic cancer.
For the last few weeks of his life we placed him in a hospice.
They cared for him until the end. And places such as this also
often rely on contributions. The
South Florida Cancer Association
would like to do what it can in these areas also.
With your help,
if there is any action on our part we may take that can save a life
or make someone's treatment easier then that is our goal. I want to
offer my personal thanks to those who have taken the time to read
this. What I and Sherry have gone through has made this a very
personal thing. I have absolutely no guarantee that I will
survive this but then no one is guaranteed to live forever.
You live your life in the best way you know how. Do kindness
when the opportunity arises, do nothing that makes you less than
yourself. And cherish what you have for you never know when
you can lose it.