Get on with It

MB responded to a tweet of mine.  I thought those electronic outbursts would only be read on Mars in the next millennium.  “On Twitter you asked if we get weary of the fight. Yes. It’s mentally and physically exhausting most days and after nine years I still find myself imagining myself in situations where I’m well” MB writes. “  That’s when emotional weariness creeps in. But everyday I regroup and refocus my attention on the many positives in my life.”

After forty years, I get it.  I, too,  am tired of the struggle, bone weary.  The sameness of every day’s assault is numbing.  I went for a walk with a neighbor yesterday.  We set out on a quiet path along the Hudson River.  it was a sunny morning, full of promise, a new day.  I made it fifty yards before frantically searching for a something o sit on.  A picnic table, even a tree stump.

I had run out of fuel.  I am such a creature of denial.  I was going to walk the full loop.  I had not taken walks all winter.  Too much snow.  This would be my day.  I know.  Expectations are a dangerous game .  I never learn.  My spirit was as low as the gas in my tank.  Sometimes my denial is so reflexive, I forget to factor in reality.

“So you had a pulmonary embolism a few weeks ago and almost cashed in your chips.  The clot may be breaking up, but it still is in your lung,” my friend said. He stared at me in disbelief.  “And now you have shingles and feel the pain”  Oh, that.

It seems to be true that many or all of us hit heartbreak Hill in our involuntary marathons.  It is inevitable.  The thought of continuing the race is tough to take.  That blood clot pushed me close to the edge.  Usually memories of all our past struggles are locked away in a special place.  I picture a toxic waste dump more than a jeweled box.  A few weeks ago they escaped like fumes.

So again comes the challenge.  I am confidant I am not the first to feel the rock closing in on the hard place.  It takes incredible emotional and physical strength to get up off the canvas.  The fight is not over until we hear the bell ring ten times.  We must get back to work.  I feel terribly self-indulgent when I reach this state.  There is work to do.

MB concludes, “Like you [have] said, what else can we do but get on with it?”

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Enough is Enough

Am I being unreasonable?

After I was diagnosed with MS, I reasoned that the illness would be my great burden.  I got used to the distant fears.  I was healthy and spent years in the television news business, running all over the world.  I loved the life of the roaming rogue, getting on top of a story an moving on.  When I went through Hong Kong, I hung out at the antique Foreign Correspondent’s Cub.  I expected to peer through the thick clouds of cigarette smoke and see Bogie at the bar.

When running became walking and turned to stumbling, I hung up my spurs and said with a chuckle, At least the MS has indemnified me against other diseases.  Enough is enough, I reasoned, and I had paid my dues.  God was not on my radar screen, and I had no use for organized religion.  But divine justice would not countenance two harsh sentences for no apparent crime. That had to be.

“I found a malignant polyp.”  The gastroenterologist announced the first discovery of colon cancer.  “You have a spot on your liver,” the surgeon said softly. “We have to check it out. “  The second bout of colon cancer was off to a bad start.    “I recommend a lumbar fusion,” my friend the orthopedic surgeon advised.  “The pain is too bad to ignore.”  Really?  I could try.  “You have a pulmonary embolism perched next to your heart,” the stunning announcement went.  We have to get you into an ICU.”

Okay.  Stop the presses.  I want to talk to my lawyer.  This was not the deal.  Really?  I believe you told us you are an atheist.  I don’t think there is anybody here to talk to.  This is not fair.  Really?  Tell it to the judge.  Pause.  By the way.  You have herpes zoster.  Huh?  Shingles.  And it is pretty painful.

Yes it is.

Who gets treated this way?  Let me see.  How bout my friend who died of a virulent brain tumor?  My former editor at the Times, whose breast cancer has metastasized to every organ in her belly?   Oh.  How about starving children all over the world?  I get the point.  A close call or two and a few painful problems do not qualify one for the role of Job in the school play.  Why me? Really should be, Why not me?  Life is unfair.  Now tell me something I don’t know.

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Batter Up

Doctors in the United States practice the best medicine in the world, to which I say, when they are finished practicing, let’s see if they can do it for real.   According to the Commonwealth Fund, our healthcare system is the costliest in the world.  Yet the quality of care ranks last among major industrial powers in the world.

I think we have known that sad fact for a while.  I wonder how those of us with progressive chronic illnesses evaluate the ammunition in the holsters of doctors.  Can physicians hit the broad side of a barn with whatever they are firing?  My progressive MS long has had the best and brightest shooting blanks.  My doctors are good people without options.

Before the stem cell trial, I had abandoned the regular care of any neurologist.   I grew weary of trying therapies intended for relapsing MS to see if they did any good. I went through all of them.  The interferons did nothing to stop the progress of the illness.  IV steroids offered mere moments of slightly enhanced muscle strength that had no lasting power and threatened bone density.

I embarked on a one-year regimen of chemotherapy, Cytoxan, and barely made it to six months.  The stuff only wiped out my quality of life, making me constantly sick, weakening me and turning my hair white.  I don’t much care about the hair, but I morphed into a fragile fellow who might take a tumble in a strong wind.

After the daily injections of another drug intended for RR MS, I moved to Tysabri, which had no effect, and then moved on to the oral agents.   By now, I was adding up the bus fare spent crossing town for treatment and decided something had to give.  And so I retired from my job as a professional patient, no letter of resignation needed.  I quietly vanished.

Don’t get me wrong.  I asked the docs to think outside the box (Good line, huh?).   Physicians cannot be faulted for throwing everything they have at a disease.  Sometimes it helps, they say.  Usually it does not, I reply, but it sure beats doing nothing.  Frustration knows no end, though I am hardly the only one in this position.

Chronic illnesses by definition are incurable.  Often they can be managed, never visible in the rear view mirror.  Expectations can be out of whack and highly unrealistic.  We hope, therefore we are. Positive outcomes become elusive, but we must continue chasing them.

Too often, however, we expect better than we get, maybe because doctors do not communicate with us.  We have to be our own advocates.   Ask questions.  Challenge doctors.  Push hard.  Who better to do that than the person in the hospital bed?  We need to step up to the plate.  The on-deck circle is empty.  I would rather be treated in the USA than anywhere else, but I would like to be treated a little better.

 

 

 

 

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No Tears, Please

When I began writing this blog more than eight months ago, I expected my share of ugly responses.  People who bother to write generally are angry, I figured, and there is the inviting anonymity of the web, where anyone can breathe fire with no accountability.  Maybe that saves on therapy bills.

My prediction was wrong.  Of course.  Individuals have been thoughtful and kind.  I live with a woman who often thinks my real problem is that I am dealing with a loose screw.  Readers have spared me such critical comments, and Meredith just likes to jerk my chain.  I am uncomfortable, though, when readers thank me so hard and often.  The clot was a huge bump in the road, but no more than others have endured.

Please allow me to clarify a point.  I am not brave, and I am no hero.  As with most of us, I am but a survivor.  There is no red badge of courage.  There are no medals or merit badges handed out for coping with serious sickness.  Having a good life is its own reward. My participation in the stem cell clinical trial is not courageous.  It is a wonderful opportunity.  I understood the possible benefits.  It was a genuine no- brainer.

I am humbled by the rich history of individuals before me, who really did demonstrate bravery in far riskier trials.  “Of course, no clinical trial is one hundred percent safe,” according to a Discovery web site.   “ There always is a risk that the prescribed treatment may not work or even worse, that it can lead to serious health problems or even death.”

I had friends perish in NIH trials for cancer drugs.  They were terminally ill and understood the risks.  This stem cell clinical trials uses autologous (our own) cells and has a very different risk profile.  Meredith and I weighed the risks and went forward with no hesitation.  No heroes in this house.

I am just a goofy guy who puts one foot in front of the other each day and does the best he can.  I dare say that would describe just about all of us.  I have said many times that I am not a victim.  Well, neither am I a hero.  I grabbed an extraordinary opportunity to perhaps have a better life.  I will survive, I am sure.  Will I flourish?  I will let you know.

 

 

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Live and Learn

Life in the Intensive Care Unit  is not a picnic.  Bright lights and a constant roar are a way of life.  Of course,  life is the business  of the ICU.  The easy existence in a world of chaos cannot be.  When a patient has a blood clot perched in a precarious place, and the docs determine that the future can be long or very short, every minute counts.  My blood was as thick as spring water as the Heparin flowed into my veins.  What was happening was clear.  Why this was going on became the murky question of the hour.

I introduced the answers into the conversation myself as a light went on in my thick scull.  This threatening situation was my fault.  Instinctively, I knew that.  I am working on a book proposal and writing this blog.  I am spending an enormous amount of time, maybe five or six hours at once, sitting at he computer.  It never occurred to me to stand and take a few steps.

When healthy individuals sit, they move their legs around and change positions with some frequency.  Legs are crossed or extended straight out.   Feet tap or rest on a stool or other object.  When someone with MS or other illness that limits mobility sits, legs become dead weights.  They do not move, sometimes sending a warning signal by going to sleep or pulsating with pins and needles.  I was oblivious.

Now add insult to injury.  My right side, extremities and all, is worthless.  Fine motor skills abandoned ship long ago.  I wrote my last books with my left hand alone.  And I am legally blind, which means I must sit with my face practically touching the screen.  The scene looks ridiculous.  My back aches as I hold that position for long periods of time.  When I finally shift in the chair, my feet do not move.  When my back aches, I do not think of my feet.

I do not think of anything but my sorry prose.  I stay focused and trust my language will grow sharper with endless revisions.  Learning to concentrate is an acquired skill for a writer.  A wandering mind is no friend in the world of words.  I was too busy to entertain the idea that a quiet killer was stalking me.  And I was aiding and abetting the would-be murderer.

The lesson is obvious.  Stand up at least once in every hour.  Move around, and when you sit, try to change position.  It is easy and painless.  This easy act may clear you brain as well as your vein.  I do not begin to know what an individual in a wheelchair does to stave off clots.  I suspect that moving legs, even with hands, will do the trick.

I am convinced that mine was a self-inflicted wound.  Live and learn.

 

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Crisis

It was sudden and serious. Very serious. A badly swollen foot and a series of tests at a local hospital revealed a sizable blood clot in a leg. A CT scan indicated a piece of the clot had broken off and reached my lungs, perched on a blood vessel close to my heart.

This was dangerous.

By Sunday morning, we were in a major medical center in New York City, I was on blood thinners and it was made clear to us that this was touch and go. Twenty-four long hours later, what they called an “umbrella” was passed through a vein in my leg to the abdominal cavity. The umbrella was opened and provided a net to catch any future clots. Within days, the blood thinner had stopped the clot in my chest. The crisis seemed to end, and a new phase had begun.  There’s a lot to figure out for the future.

This had nothing to do with the stem cell clinical trial. It probably was caused by too many hours sitting in one position at the computer. The trial goes on and my determination to get over this goes on with it.

One doctor commented that I was pulled back from the brink.  Staring mortality in the face is frightening. I believe that things will work out. It leaves me with a lot to think about in my life.

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The Amazing Disintegrating Man

One could  argue  the long dance with MS prepares a person for ambiguity and frustration.  True enough.   What I am dealing with now, however, would get anybody lost on the long road to renewed health.  That destination is hard enough to find under any circumstances.  My new role as The Amazing Disintegrating Man has brought new mystery to medicine.  Just ask my neurologist.

I was about to begin my second round if IVIG infusions.  That would stand for, Intravenous immunoglobulin. IVIG is made of antibodies that have been filtered out of donated human blood pooled from many donors.  You with me?  Right.  These five hour infusions save patients from physical problems by boring them to death.

Suddenly, I noticed my skin was becoming red, raw and ulcerated.  The back of my neck had caught fire.  I was covered with dead skin, leaving piles of it everywhere I went.   And…and…the sores were moving around my body.  Quickly, I decided something is not right, here.  I went to a dermatologist in the next town, suggesting this was a reaction to IVIG.  “Definitely not,” she said quickly, offering no other theories.

I went home and called my neurologist.  “It’s probably the IVIG,” he said.  “I’ve seen it before.”  Okay.  I went to see a different dermatologist, someone I had worked with in the past. She biopsied my thigh.  “You are having an allergic reaction to a drug.

We still were getting nowhere  fast.  I was awakening morning s with bloody legs from scratching in my sleep.  There were piles of hair in the bed every morning because my scalp was so dry, in addition to the scratching.  My neurologist put me on methyl prednisone.  It did not touch the problem.  Then we went to regular, old oral prednisone, a drug I had barely survived in the past and had sworn never to use again.  It did nothing.

By now my hands were red and swollen, my palms peeling away.  My fingertips were split.  It hurt just to look at them.  I went to a major New York medical center.  My five minutes with the big dermatologist was similar to the drive in window at MacDonald’s.  I picked up my burger and fries and was assured this would just go away.  “Be patient.”  Patient?  We were closing in on two months.  That’s eight weeks,  about fifty-six days.  But who’s counting?

People are walking around me now.  My family is denying they know me.  I hurt and itch and have no faith my body will get back to as close to normal as it ever is.  I want to keep my sense of humor.  It must be with my wallet.  I can’t find it.  I will say this.  I have made a decision I am announcing on this blog.  I am joining the circus.  The Amazing Disintegrating Man will be coming to a city near you soon.

 

13

Images of a Better Life

Sometimes a long awaited treatment can feel like the endgame.  It seems as if it is  the final act of the play when, in fact, the curtain just went up.  There can be a letdown when we repair home from the doctor’s office.  I spent virtually one year thinking and fantasizing, then waiting and preparing for the stem cell infusion that would lead me down the road to a better life.

There are no new roads visible in the neighborhood., just the same old streets we travel to routine destinations in our lives.   I do not expect the view from my window to change.  It occurs to me I never did project the visual image of a new life from the projector in my head.  Word pictures are dangerous.  Non verbal images are potent, too.

Expectations need not be verbalized or even made visually clear.  I have refused to lay out my hopes for stem cell induced change.  Expectations are a dangerous game, I have said.  The fuzzy photos of the mind can set up a person for disappointment as effectively as vivid descriptions of our dreams.

We who are giving over our bodies over to a clinical trial are playing a mind game, too.

 

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Beginnings

My first stem cell infusion took place in New York City on a cold March day very recently. The event was a long time coming.  I was more enthusiastic than apprehensive.  I knew a long, thin  needle would be inserted into my spinal column and the cells released.  I was ready.

The stem cells had been taken from bone marrow pulled from my sternum many months ago.  The cells were cultivated, fed and nourished for half a year.  The time had come to introduce them into their new home.   The procedure would be groundbreaking, the first of its kind.  I looked like hell, an allergic reaction to all the drugs I had been taking tearing at my skin.  I was uncomfortable but ready to celebrate.

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The Fight Resumes

At last, clarification.  I just talked to my neurologist.  The stem cell trial was finally approved by the IRB.    That is the Institutional Review Board or the Investigational  Review Board.  No difference.  These boards exist to monitor safety and guard against potentially expensive liability issues.  IRBs can be tough audiences.  The last hurdle has been jumped.

It will take days to set up the stem cell infusion.  After forty years, I guess a few more days should not matter.  They do, of course, but that is my problem.  Years of work and millions of dollars are at stake.  I am not so self-absorbed that I believe I am the issue.  This trial is larger than any single individual.  I am but a laboratory rat and proud of it.  Let the battle continue.

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