Time on Fire: My Comedy of Terrors (11 page)

In addition, and most important, the simple act of releasing long pent-up emotions allowed me to see the love and generosity that had been in their eyes all along.  Although I wasn’t able to perceive it that way for some time, the anger I had carried with me as a result of years spent denying my own spirit had seized its own opportunity in the illness.  The adolescent rebellion that I had been too adult and mature for as a teenager was simply postponed.  As late as it may have come, not only did it set me free from the structure that had previously been strangling me, but that freedom, in turn, then allowed me to reengage with that structure in a more mutually beneficial way.  My decision to speak the unspeakable is what ultimately allowed me to permit my struggle to become a group effort — to allow my family to give me the help they were capable of.  These are the same principles that go into the making of any good team, whether the game is baseball, basketball, football, cancer, or lacrosse.  Each individual must give up the natural drive to distinguish between the glory of his own methods and a teammate’s weaknesses.  Each needs to contribute to the best of his abilities, to recognize his own strengths and deficiencies, and to give where he can and clear out when he is in the way.  The only goal must be to win, a victory for the team.  And from that day on, that’s what my family started to become.

Trips number two and three down the chemotherapy trail proved to be just as exasperating as number one, with the added burden of a lot more physical discomfort.  It turned out that Dr. Zweig had been right: I had gotten off easy my first time through.  I’d even go so far as to say, based on the induction course that I had breezed through, that I had no idea what chemotherapy really was.  But, as it turned out, I proved to be a quick learner.

We as human beings have a mechanism to defend the body against contamination by bacteria or toxins.  It’s called vomiting.  Not all animals have this ability.  It’s one of the perks that we get for enduring the power of reason.   In this respect, as perhaps in many others, we are all lucky to
be
human beings.

Horses can’t vomit.  I know this because, when I was a kid, my parents kept a horse at a local stable for my sister.  It was a constant source of jealousy.  I had no interest in the horse at all, it was just that there was no way they could ever spend as much money on me or a hobby of mine, no matter what I thought of.  But I did learn that if a horse eats something that makes it ill, there is a good chance that the horse will die.  I don’t know what happens to a horse if you give it chemotherapy.  Because whatever chemotherapy can do or can’t do, whatever it might cure or doesn’t, chemotherapy will make you vomit.  For hours.  For days.  For weeks.

It reached a point where there would be nothing unusual about having a violent vomiting attack in the middle of a meal, pausing to catch my breath, and going right back to eating.  It became so horrible that I would have laughing fits in the midst of vomiting.  Jackie and I would both laugh until we cried, with my grotesque heaves and groans punctuating the giggles and guffaws, and all the sounds melding into marvelous syncopated rhythms.  Even after all my treatment was finished, after I was living at home and off all drugs, long out of the hospital, I threw up every day for six months.  Not the violent, hour after hour of projectile vomiting caused by the chemotherapy drugs when they were actually in my system.  This was a manifestation of some kind of systemic imbalance.  A digestive tract and equilibrium completely out of whack, so that, perhaps sitting up quickly in bed; maybe in the shower in the morning; usually with very little warning, I’d wretch and puke.  Wretch and puke.  Wretch and puke.  I wondered if this was going to be a peculiar hygiene problem for years and years to come.

Another of the more compelling problems that arose between these vomit fests during the next hospitalizations had to do with nothing more exotic than my arms.  My doctor’s decision not to implant a catheter in my chest was beginning to impose its consequences.

My daily schedule of vein puncturings could easily rise above five, and at times, climb close to ten.  Blood was routinely drawn around dawn for the daily blood tests, as well as any time a blood transfusion was needed (to match the compatibility of the donor blood).  Again, blood would be drawn any time a fever appeared, to try to culture the bacteria that was the cause; and when the results of the morning lab tests came back, it was often necessary to administer bottles of fluids and electrolytes to keep the circuits of the body running smoothly.  Of course, once the blood products arrived for transfusion, in they went as well, through the same veins in my arms.  Until one could no longer be found.

The chemicals that were being passed through my veins were not entirely harmless to them.  In fact, they were anything but.  The chemotherapy drugs would, quite literally, turn hollow, flexible veins into solid, stiff scar tissue.  One by one, the easily seen, easily punctured veins in my arms hardened and dried up.  The needles then would be put into my hands.  When a vein couldn’t be found in my hand, and this was after several attempts at puncturing and rooting around under the skin, then the needle might be placed in my wrist.  The soft, inside part of my wrist.  For the really unlucky, like I came to be, this happens when they’re in urgent need of a blood transfusion, because the thick, cold, maroon glop that makes up a transfusion of packed red blood cells can’t travel through just any needle.  It requires an extra large needle and often consists of two or more large plastic packages of liquid, which can take more than an hour apiece to drip into the body.  If the goo is oozing into a tiny little vein at the inside of the wrist, it
hurts
.  It aches with the you-wish-it-were-numbing pain of holding your arm in ice cold water for too long.  For three hours too long.  I would hold warm compresses against my arm to try to warm up the liquid flowing in.

Some of the electrolyte chemicals, without which the heart stops beating, or the brain’s electronic commands can’t be followed, have, in concentrated form, a very different alkaline composition from that of the body.  This simply means that when dripped in through a vein the chemicals
sting
like a fire flowing up the length of the inside of the arm.  This is how I would spend my days.  So, when it was necessary to find a new vein, when an IV line already in place failed to run quickly enough, I would beg and plead to avoid having a new one shoved in.  Especially if certain IV nurses were the ones on duty.

Phlebotomy.  The insertion of a hollow needle into a viable vein to gain access to the bloodstream.  The procedure is performed by phlebotomists.  An interesting craft, practiced by an intriguing people.  There are degrees of skill, and all the unpredictable ramifications of that fact, in everything.  And there are people who are talented at sliding needles into deep, hidden, rolling veins without causing much pain.  But of greater importance, much greater importance, there are people who are
untalented
at it.  There is a distinct aura, in phlebotomical circles, around certain individuals that are known to be gifted.  They can locate veins by lightly running their fingers over the surface of the skin, veins that no one else can see or feel.  Like the diviners with their mysterious rods in the desert sands, they can sense the presence of subterranean liquids.  Then they’ll slide a needle into the channel, quickly, painlessly, with no more fanfare than if they had brushed a stray hair off your forehead.  There seems to be a profound relationship in these individuals between their success and their confidence.  The “magicians,” as they are often called, have complete faith in their abilities to find any vein in any person, no matter how damaged the arm.

The other side of this equation are those whose confidence has been bruised.  It is easy to detect a phlebotomist who will fail to find a vein long before the needle touches any skin.  You can see the doubt in their eyes.  This is why, once a phlebotomist  has a bad experience with a patient, the patient is bound to have several bad experiences with that phlebotomist.  It’s like relief pitching in baseball.  There are those pitchers who know that they own the batter, and so they do.  Then there are those hitters about whom a pitcher has just a few doubts, and watch him get beat.  When my arms were sore and swollen, covered with gruesome bruises; when I was spending my days soaking those arms in warm water to somewhat ease the distress; when I thought that no one, no one could possibly touch my arm again, ever, without it causing unbearable pain, in would walk the Filipino lady with the falsetto voice.  Because she was the worst of all.

The falsetto-voiced  Filipino phlebotomist always said the same thing as she walked into my room:

“O-
kay
, Mr. Evans.  I have to draw your bloods.”

I could hear the apology in her voice.  No.  There was an apology in the intake of breath before she even spoke.  She dreaded this almost as much as I did.  She knew she was going to fail before she’d begun.

“O-
kay
, Mr. Evans.  Which arm today?”

My veins could sense her hesitation.  Veins have their own peculiar survival technique in that they can actually retreat and hide.  I don’t know if it’s a documented medical phenomenon, but I’ve seen it happen.  Few things in this world are more ruthless than bad veins that can smell a phlebotomist’s fear.  As soon as the flat, falsetto tone of her voice reached my ears, I’d feel my veins constrict and shrink deeper under my skin.  You could almost hear them chuckling.  They would play with her while I writhed in agony.

As soon as the tourniquet was pulled tightly around my scrawny bicep, my whole arm, already sore and swollen, would begin to throb and turn bright red.

“O-
kay
, Mr. Evans.  Hold still.”

I knew there wasn’t a blind man’s chance in Hell that she was going to get a vein.  She knew before she had dinner last night that she wasn’t going to get a needle in my vein today.

“O-
kay
, Mr. Evans.  Little pinch.”

Little pinch, my bony, malnourished ass.  The needle was in my flesh, and the pain shot up the inside of my arm and wrapped itself around my neck like a six-foot rough woolen scarf.  It wound itself around the base of every dormant hair follicle, then spread out over my scalp and coated it with a hot poultice of sharp needles.

“Hold still, Mr. Evans.”

At least she didn’t say “o-
kay
” this time.

I had learned a preference early on that, I guess, made me different from most of the other patients.  First of all, when a needle does hit a vein, when it slides successfully
into
the vein, there is no pain.  Almost none at all.  So I usually knew before the nurse whether we’d gotten a hit or not.  And to me, there was no torture worse than someone rooting around and digging in my flesh to find a vein that they had missed on the way in.  I don’t think anyone ever found a vein this way on me anyway.  So I would say, as soon as the miss became apparent, “Hey.  Hey, hey, HEY!  Hold it.  Just…just…okay,
STOP
!  Look, I’d much rather you take the needle out completely and start all over with a fresh stick than move the needle around while it’s already in my skin.”  And, of course, they all took this to mean that I was a masochist and really loved pain.  Who else would want to be stuck again?

But I knew that if the needle went in the right place the next time, there’d be no pain.  And if the needle didn’t go in right the next time, and didn’t go in right the time after that… then,
then
the falsetto-ed vampiress would say, “O-
kay
, Mr. Evans.  I send somebody else in.”

Now
that
was “O-
kay
“!

You see, the policy was, three strikes and you’re out.  If you endured three stabs, and no blood poured forth, then they would endure the delays entailed by calling in the other IV nurse on the floor.  If you’d really been suffering, and all the nurses were afraid to try, they’d bring in one of the magicians, from wherever in the hospital he or she might be.  What a sight that was, to see one of those blessed surveyors of the internal aqueducts glide – no, float – into the room.  My muscles would relax, my heart would slow down, and my veins, my precious, perverse veins, would swell with blood and float up to the surface, ready to meet the needle.

The other plague that struck me hard and wouldn’t let go was a constant barrage of rashes.  I came to understand that I am as supersensitive to drugs and chemicals that I come in contact with as the most delicate of endangered wildlife are to changes in their habitats.

Before chemotherapy drugs are administered there is another drug to be taken, allopurinol, which is given to help the body deal with the byproducts of all the cells that will soon be dying off inside.  I proved to be allergic to this drug.  Each time it was administered I broke out in a ferocious red rash that started immediately below my neck and ended at my ankle.  As this rash began to fade, about two weeks later, I might be put on an antibiotic that would again cause my flesh to explode.  To blossom, with all the brilliance of rolling hills of wild flowers.  Again and again I turned into a contoured topographical map of the substances that were being run through me.  I would look at my skin, at my body, and the disfiguration was so extreme that it was hard to imagine that it could ever smooth out.  Even if the rashes were to leave, I couldn’t envision that stretched, ravaged wrapping paper ever fitting right again.

After the second round of treatment was finished, I was sent home to rest for another month before the final dose.  A few days after getting home, though, my skin erupted once more.  Despite the fact that I was currently taking no drugs, I was being seized by some force that was crimping and wrinkling my skin in a fiery pageant of colors and patterns.  I haven’t used the word “itch” yet, only because it is dreadfully inadequate.  There is a level of itching that goes beyond itching and becomes a grotesque pain that
includes
itching.  Then it becomes a torture that will bend your mind.  It can even become so consuming that it is very easy to injure yourself, with the deluded notion that the itching might be quieted.  I, myself, had to be talked out of raking a fork over my arms.  I thought that perhaps, if I could scrape the rash off, my skin would then heal over and the rash would be gone.  It would have been so much more bearable to be one giant scab, than to itch for one more instant.

Besides the suffering, we were worried.  What was causing this rash?  I made an appointment to see Dr. Zweig.

If anything could compete with the horror of life on the floor at Sloan-Kettering, it was the outpatient clinic.  The only way to procure a visitation with one’s attending physician at that hospital, short of checking oneself in, was to make an appointment for one of the two weekly “clinic days” each doctor conducted.  The clinic was crowded and noisy, with people in all stages of recovery and deterioration, and the difference between my appointment time and when I actually saw a doctor was consistently in the two to four hour range.  This time was spent sitting in the giant waiting room while the PA system droned incessantly with mispronounced name after mispronounced name.

“
My
-ran-da…Miran…
My
-ran-da Thhhowmaas.  Vin…Vine…Vine-seent Wojell.  Vojel.  Vo-
gel
?  Vine-ceent Vogel.  Eh-vahn…E-Evonne…Evonne Huyn-del.”  That was me.  The names were called by the technicians in the blood lab, which was my first stop after the waiting room.  Hours later, if the doctor decided that more blood tests were needed, then I went back to waiting until some other version of my name was called again.  It would usually be startlingly different from the one announced two or three hours earlier.  If a blood transfusion proved necessary I went back to the blood lab to get my blood drawn once more, to be tested for donor compatibility, then waited another two hours for the blood to be ordered and delivered from the blood bank. 
Then
I went to the transfusion room to be drugged and transfused, which could take anywhere from one to six hours itself.  This could easily stretch into a twelve- hour day.  And I shared this routine with hundreds of other sick people, three days a week for weeks on end.  I usually felt I could barely survive this ordeal, and I was twenty-four years old.  How anyone sixty, seventy, eighty years old could possibly endure was a mystery to me.