A Medical Odyssey

I believe the popularity of those TV or movie medical dramas can be attributed to the fact  that the audience gets to live vicariously through some unlucky soul's horror of disease.  Living through someone else's medical condition is comforting because you're healthy.  But what if a serious health issue visits you personally and the nightmare of disease becomes your reality?  Dealing with disaster and living with it.  I've been there, done that and bought the tee-shirt.

Up until my diagnosis, it was always the other person who got cancer, went blind or was confined to a wheel chair. This is the story of my medical odyssey through the darkness.

I was born and raised in Los Angeles.  My mother and father and two older brothers migrated to Los Angeles from the mid-west in 1946 when the Cleveland Rams football team came to LA.  My father was a very popular sports broadcaster, Bob Kelley. He was known as "the voice of the LA Rams" among other things.  Dad also had a sports program called, The Parade of Sports.  He announced the Angles Pacific Coast League baseball games, did small roles in movies and owned a restaurant.  He did a lot of things right up until the time of his death in 1966.  He was 49 years old.  He worked hard, played hard and died young.

I was born in 1950 and was 16 years old at the time of my father's passing.  My younger brother Mike was only 12. Two years after my dad died I decided to follow in his broadcasting footsteps. 

I won't bore you with the story of my success in the wonderful world of radio.  Suffice it to say, from San Luis Obispo through Palm Springs, Santa Barbara and Duarte, over a ten year period, I finally made it to KMET in Los Angeles.  In 1978, the "legend" of Paraquat Kelley was born.  Lord knows, I tried to do my father's name proud via the radio. The only difference was, back in the day, he was dubbed "Southern California's most respected sports authority."  I jokingly referred to myself as: "Southern California's most least respected journalist."  It worked for me. 

Perhaps at another time, I will regale you with some of the inside stories of KMET: Sex, Drugs and Rock and Roll.  All of which may have contributed to the disease of which I'm going to talk to you about.  I worked at KMET for over decade.

After the Mighty Met (KMET) I was like an addict "chasing the dragon" attempting to achieve the same high I'd acquired at KMET at other radio stations.  I worked for KMPC FM and did mornings in New York City at WNEW FM.  Neither of the stations came close to recreating the high I felt working at KMET.

While at WNEW, we lived in beautiful Stamford, Connecticut, in a six bedroom house on three-and-a-half acres, situated in the woods on a golf course.  My wife Melody, two dogs, a cat and I shared paradise.  The late great Benny Goodman lived in this house!

I spent plenty of days in the woods fishing at the nearby pond with my three dogs.  Never did catch anything of note; or so I thought.

I'd never been so unhappy in my work.  After spending three years in Connecticut, Melody and I were both relieved and glad to get back home to Southern California.

We had gone to New York hoping to continue the magic of KMET.  It never happened.  I have my theory about why The Paraquat Kelley Show in NYC failed, but that's another story.

Returning to LA made me realize how much I loved the West Coast.  I vowed to myself to never go east of the Mississippi.  So far, some 10-plus years later I have kept the promise.

Radio had changed. What once had been a creative, vibrant, and entertaining business had turned into a business-business.  It became more about the business than the show; it was time for Paraquat to go.  So in late 2006, my wife Melody and I got our real estate licenses and embarked on another career.  Melody was a television star of repute herself having hosted CBS's popular 2 on The Town show for 8 years. Melody had also performed on Broadway, in A Chorus Line, done numerous television shows, and some films.  In late 2006 we graduated to the wonderful world of real estate.  Just when you feel that things are getting better, they sometimes get worse.

We worked a two-year apprenticeship in real estate at Coldwell Banker.  We actually did rather well.  So well, in fact, that we were recruited by the upscale Beverly Hills firm Nourmand & Associates where we've been ever since.  At the new firm's Christmas party in 2002, I finally acknowledged to myself that something odd was going on inside my body.

I had played golf almost every day of my life from an early age.  I was a scratch golfer.  From time to time, during the past few years, I would notice strange tingling sensations in my back and legs.  I would shake off the symptoms believing that they were the result of my golf swing. Denial would be a better way of putting it.  I remember a two-to-three-day period where my legs actually went numb!  "I must have pinched something," I'd tell myself. It wasn't until December 2002, after almost pulling Melody into the gutter along the streets of Beverly Hills going to the office Christmas party, it became fairly evident my difficulty walking was not due to a bad golf swing.

WHAT'S UP DOC?

Our family physician and I played golf together.  I could see the worry in his eyes when Melody and I entered the exam room.  He put me through a battery of tests and concluded that whatever it was I had he couldn't say for sure.  So he referred me to a neurologist friend of his who could see me that day.

I had spent years in denial about the symptoms I had been experiencing.  Today we were going to get to the bottom of the problem, I hoped.

A visit to the neurologist's office was not something we looked forward to.  I found neurologist in the dictionary.  It said: "One specializing in neurology; especially: a physician skilled in the diagnosis and treatment of disease of the nervous system."  Pretty scary.

After a cursory "going over," the new doctor concluded; he needed to see an MRI of my brain and upper and lower spine before he could make a diagnosis.  I noticed he wasn't smiling at my usual off-the-cuff one liners and jokes.  This was serious business.  I implored him to give me something positive to take with me after this first office visit. I needed something to allay my fear. He gave me nothing, other than saying, "I will not make a diagnosis without the MRI."  It made me wonder. How many people go to neurologists and get "good news?"  I told the doctor I was claustrophobic and MRIs bothered me.  He said, "That's okay. They can put you to sleep and do the test.  I'll call you when I set the scan up," He rose from his desk as if dismissing us from his office.  What had I gotten myself into?  Maybe I was going to follow in my father's footsteps to an early grave.

THE MRI

The following Saturday afternoon I have a date with fate--the MRI, a narrow steel tube you're packed into.  It's very tight and claustrophobic.  Just looking at the device gives me the creeps.  As I lie on the gurney that is slid into the MRI, I am flanked by attendants, nurses and an anesthesiologist.  I am scared, although those around me make it as pleasant as possible.  After the nurse plugs an I.V. into my arm, I am resigned to fate.  I do tell the anesthesiologist to make sure I do not wake up inside that thing.  He smiles and reassures me that will not happen.  Then the "doctor of sleep" smiles and says, "Do you like white or red wine?"  I reply, "Red."  He winks and says, "I just poured a bottle of Merlot into your brain." What is it about me that brings out the sardonic humor in others?  I must give the impression to people who don't know me that I'm mellow and easy going. Before I can further ponder… Blackness.

There are no dreams in the land of medically-induced sleep. All I know is some two-and- half-hours later, my eyes open and I awake. Good news, people are smiling. "How'd I do?" "The radiologist is reading it right now, won't know for awhile." My wife Melody says as she helps me shuffle back tothe dressing room. The MRI operators alluded to her that today was a good day in the MRI room. Only one bad diagnosis and it wasn't me. She said I went into the cubicle to change into my street my clothes and was in there for about an hour. I must have still been waking up. At any rate, we left and I tried to collect my thoughts. The doctor said it was okay for me to have a little wine that night—so I did. We had dinner at a friend's house. I was relieved, as were Melody and my friends, that the MRI scan was over.

I spent Sunday watching the NFL on television and was fairly relaxed. I was awaiting a call from the doctor. It never came, which led me to believe that whatever it was that ailed me was not urgent enough to rate an alert from the doctor. Tomorrow we'd find out.

I got up especially early Monday, feeling fairly confident the neurologist would be calling any minute. By noon, Melody called our friend, the family doctor. He hadn't heard anything yet either. I'm thinking if it were real bad they would have called by now. Three P.M., still no call. Around 5:30 the phone rings. Caller ID tells me it's the doctor. "Here we go."I remember saying to myself. I answer the phone. The doctor begins by saying he normally doesn't deliver news this way (over the phone) but because of the difficulty I have getting into his office. "The MRI indicates you have MS." "Really?" I say. "The radiologist, who I know and trust, is calling it that, and I concur." "MS," I repeat. "Yeah," replies the doctor. Asking if it's life threatening, I am relieved to hear, no, it's treatable. Confused, I ask, "What did you think I had?" He replies, "You don't even want to know. This is a treatable disease and that's the good news." "I was wondering, I thought maybe it was ALS (Lou Gehrig's Disease)."

"Well," says the doctor, "that's what I thought at first." "So Idon't have ALS?" I ask. "You do not have ALS," replies the neurologist. "MS and it's treatable?" I say again. "Yes," responds the doctor. "Well, that's kind of good news, huh?" I offer feebly. "It' s better than I expected. When you 1eft the office the other day, I pounded the desk in frustration. I  thought it was going to be bad," The doctor continued. "Well, this is good news then," I say. "It's not going to be a walk in the park, but it's better than what I thought it was going to be. Call my secretary and set up an appointment so we can start you on treatment in the next couple of days," answers the doctor. "Thanks," I say and hang up.

Now I have to call my wife and tell her. I'm actually happy! I have MS. It's treatable and it won't shorten my life span.

That's good news!

I am not as good a salesman as the doctor. Happy as I might have appeared my wife was stunned by the news of my diagnosis. I reminded her, "It could have been worse." Truth is: after years of living that philosophy it is all relative. The reality is: I can't walk, and that sucks. It has taken me years to come to that truthful realization. Melody took the news like a good Trouper.  What else can you do?  You can be devastated, break down and search the universe for someone or thing to blame but it doesn't matter.  Assigning blame to the condition won't change it.  My attitude was one of being thankful that MS was all I had.  I was also digging in, taking a stance and preparing to fight this invader of my healthy body.  It was a fight I felt confident I could win.  Melody confessed that on the Friday night before the MRI, our doctor had called to offer her support.  My doctor, my friend, was worried too.  The result of the MRI at the time seemed reason to celebrate; at least I wouldn't be dying soon.

LIVING WITH THE DIAGONSIS

Since that fateful day of the diagnosis, I have been living the life of one who has Multiple Sclerosis. There has not been one day that this disease has not been the focal point of my life since I was "tagged" with it.  It is all-consuming mentally.  I cannot get it out of my mind.  Physically, I watch for declines in my ability every conscious moment.  Even when I sleep, I awake mindful of my condition and always check my body movement skill for degradation.  It's a curse.

I have been taking the treatments, a daily dose of Baclofen, which is a central nervous system suppressant, and Copaxone, a daily injection to prevent further lesions developing on my brain and spinal cord.  I have had up days, down days and sideways days.  Along with the medications, I take yoga classes, acupuncture, see therapists, all of which is intended to help me cope with this progressive disease. 

Once the disease becomes part of your everyday life, people often call or ask "How are you doing?"  One such inquiry led my wife and me on a new path to battle this disease.

While showing a property in our real estate business, Melody ran into an old acquaintance from her days on Broadway as a dancer.  The topic of marriage came up, my name, and disease… and guess what?  This old friend of Melody's, a choreographer, had been diagnosed with MS in the early 90's.  He had diligently researched the disease and cures and ended up going to Hamburg, Germany.  When he departed for Hamburg, this person had lost 90 percent of his vision and had difficulty walking.  After two weeks at this clinic, his vision returned.  Two months later, the patient was playing tennis again.  This was pretty promising news!

                Our next step was simple; how fast can we get to this clinic.  Using the internet and e-mail, I quickly establish contact with the clinic in Hanover, Germany.  The treatment calls for me to be there for a two-week period.  There are hotels and rooms that can be leased. The airfare is expensive, not to mention the treatment, but when it's your health at stake suddenly money becomes less important.  The talk of going to this clinic becomes first and foremost in all of our conversations.  People hear of our impending trip to Hamburg and call us, offering places to stay while we are there, names of friends, and words of encouragement.  People we don't even know call to offer their moral support. It's pretty impressive to find out how many people out there want to help.  These are people we hardly know!  I'm talking about parking lot attendants, strangers in elevators, clerks at fast food restaurants; they all go out of their way to help you.  One thing I've learned from this situation I've found myself in: never underestimate the compassion of fellow human beings.  I am amazed at the number of caring souls (I call them angels) out there ready to avail for my benefit.  The next thing to happen was as Bob Dylan would say, "A simple twist of fate."

A NEW LOCAL DOCTOR

Through our travels, conversations, and day-to-day living with the MS stigma, the next logical thing happened.  Someone else who visited a similar clinic to the one in Hanover was not healed and they offered us good advice, "Before you go to Germany there is a local doctor who may be able to help you."  That suggestion alone could conceivably save us $20,000.  It was certainly worth a try, right?

So after living with MS for five-plus years, we went to a new doctor to see if there wasn't some other treatment available.  This doctor, who is MD and a holistic healer, took more blood from me than you could imagine. She suspected mercury poisoning. The blood tests were almost the price of a ticket to Germany. Two weeks after my initial visit the doctor called somewhat discouraged.  Apparently my blood work showed I was not suffering from mercury poisoning.  If it had, it would have been something treatable, and possibly I might never even have had MS at all.   The doctor's hopes had been dashed, as well as mine.  Three days later came the next call.  "You won't believe this. You've tested positive for Lyme Disease."  Those words were spoken by my "new" doctor. 

Most Southern Californians are not familiar with Lyme disease, which is a neurological disorder transmitted to humans who have been bitten by deer ticks.  Deer ticks--those little parasites that glom onto deer and suck their blood.  The reason I was so familiar with Lyme disease was because we lived in Connecticut not far from Old Lyme, the city where the disease was first discovered and later named.  Not only that, my wife Melody had been twice bitten by infected ticks while we were in Connecticut, and her horse had gotten Lyme disease two times and had to be treated with massive infusions of antibiotics.  In fact, while back East, I got tested for Lyme disease.  The test was negative.  I knew one thing: this could be great news!

TREATING LYME DISEASE

I remembered the words of my neurologist when he informed me that I had MS.  Of course, I wasn't happy about the diagnosis, but I felt somewhat relieved it was only MS.  He said it was treatable, but it was not "a walk in the park."  He was right about that.  It's tough. 

I was now looking forward to my newly diagnosed Lyme treatment, and believe me when I tell you --- that treatment is no "walk in the park."  Treating Lyme disease is like chemotherapy.  You body is bombarded with massive doses of antibiotics designed to kill the virus in your blood.  Naturally the antibiotics kill everything else in your system.  It's not easy.

Here's a great aside to this story.  Once it was discovered I had Lyme, we told our friends.  It was good news!  One particular friend of ours, television producer Joel Tator, was conveying the story of my condition to an associate of his.  Joel said, "The guy's jaw literally dropped.  He grabbed his cell phone." He called me.  This person was an executive at one of LA's television stations.  He was someone we knew and could trust.  He told me he too had been diagnosed with MS, years ago. He was preparing for the worst and out of the blue another doctor discovered he had Lyme disease!  He was subsequently treated for Lyme and has been totally healed!  He told me the same would happen to me, keep the faith and that he was pulling for me. What great news.

"AND IN THE END…"

And so, here I am writing this story.  I am a product of the 60s.  I believe the "Peace and Love Generation" could best describe the vibe that permeated my age group.  I am proud of that. In fact, the day that I am writing the final chapter of this story just so happens to be the 40th anniversary of the so-called "British Invasion" (musically) of America.  On this day, February 6, 1968, The Beatles' plane landed in New York, thus setting off a phenomenal period of time when the music seemed to speak to the people. 

I'm sure this occurrence is not exclusive to my generation, but it has been an important aspect of my life. Of course, there are many other artists that promoted peace and love in their songs.

It seems that "Peace and Love" was the mantra of the 60s, 70s, 80s, and 90s.  Since my medical odyssey began years ago, I discovered a new mantra for me for the 2000's.  It is one simple word: Hope.

At this time, my energy is returning.  Mentally, I am just like I used to be before the diagnosis.  Physically, I still have a ways to go.  My gait has not returned yet, but there is distinct improvement. There is increased movement and sensation in my toes, feet and legs.  I am told to expect a full recovery, though it could take as long as six months to two years.

My experience has taught me never to lose hope while going through difficult times.  I can see "light at the end of the tunnel." We are sometimes taught lessons in strange fashions.  Here is what I learned while traveling through my medical odyssey: never lose hope; you are surrounded by angels (just have to look for them); and there is a lot of love out there.  Hope, Angels and Love--the unexpected gifts that came attached with my diagnosis.