My Story

1. 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.

2. 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.

3. 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.

4. 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.

5.  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 things.

I had not one but two tumors, both malignant.  The "ear infection" turned out to be a 2cm tumor located in the lymph node itself.  The lymph node was filled with 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 atrophied.

I was moved to intensive care 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 chemo therapy.  Few people understand exactly what chemo-therapy is intended to do.  Cancer cells  are weaker than your normal cells.  The theory in chemo therapy is that they poison you and do it continuously.  The hope is that the cancer cells 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 boy.

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 esophageal cancer.  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.

My radiation was done at a different hospital, one of the best cancer treatment centers in the State of Florida and a place 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 treatment.

I met a man with leukemia.  He lives in Homestead but must come to Miami for 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 home.

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 held.

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 South Florida speak not only English and Spanish but French, Creole, 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 Caribbean, 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 this page 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.