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Gene McLaughlin

 

Greentown, PA; bonehill@ptd.net

5-16-1938 / Class of '95 / Updated: 1/99

My name is Gene McLaughlin. I live in PA, in the Pocono Mountains, I was diagnosed in 1995. I was born on May 16, 1938, in Scranton, Pennsylvania. I have Stage 3 Myeloma. In June of 1995, I'd been retired from thirty-five years on the job - for about a month, and, with Ray Charles wailing in my ears through a Walkman, I was wandering, pleased with myself, through the beech, pine and laurel woods of Pennsylvania. That day, for most of my meandering walk, my purpose was, ostensibly, to search for wild mushrooms, which I did that day without much success. I had contributed a lot of dues over the years, and wanted to savor every moment now that my time had finally come. I thanked God and Ray a few times that afternoon. I had been swimming blissfully through a few days like this and I wrote fiction on the computer to about three in the morning.

About four miles from home, I felt a twinge in my right butt and thought I had pulled a muscle, but the pain stayed, and even got worse. I had broken a large bone in my right hip area, the iliac bone. I walked back the four miles to home on the break. I didn't have much choice. Very few people would have known where I was. Because of the forced march, the damage I did to a tangle of nerves proved most painful later. I still suffer from that damage. After a series of doctors - local - and a collection of pain killers that did not work, I was in the bathtub one evening, about ten days later, trying to soak the offending rear end and when I tried to push myself up and out of the tub, I broke my left shoulder. Note that this break is on the end of my body opposite the other break, where bone marrow is produced. Later on, this would prove significant to some doctors. I was a 'classic' something or other, a pattern for Multiple Myeloma. I just couldn't stay in bed, so I drove thirty miles an emergency room where I found a doctor who wanted mostly to get back to smoking outside. It was about three in the morning and very hot. I hurt quite a bit. That combination of pain was new to me and I didn't know how to gauge it, measure it, and then forget it, a process I am still learning.

The shoulder was x-rayed and then I was presented with the information that nothing was wrong. The 'nicotine practitioner' said I didn't need medication and, for my troubles, I was given a Velcro-connected sling for my arm. I went home to find that I couldn't sleep on either side of my body because of pain.

I live in Greentown, Pennsylvania, moved from Matamoras, Pennsylvania after I retired so I could write. The area I lived in before was desolate when I moved there. A large number of new houses went up on the mountain in those last two years. I then had six novels planned. I still do. One is completed and unsold. Another is complete but in very sloppy shape.

I am the father of an autistic daughter (28) and my wife, Mary Lou, and I have had to struggle, sometimes desperately, in order to raise her. Many nights, over a few years' time, I would drive around all night with her - the motion helped her sleep in the car - and I would get back on time so I could drink a coffee and take a shower and go to work. We lived in an apartment on a farm and had a huge garden we enjoyed it enormously. We stayed almost twenty-five years, mostly to afford privacy for our girl. I did, however, learn what stress was. Yet, although my daughter was then the world's biggest pain in the neck, she is the love of my life. She is happy now and doing very well in a group home about thirty miles away and visits us every other weekend where we listen to "A Prairie Home Companion" on PBS, her head on my shoulder. She has lost weight, looks terrific, and it is obvious that the guilt-ridden move my Mary Lou and I made, letting her go, was the right thing to do. We knew Erin would have to learn to get along without us some day and she has made the adjustment readily.

Mary Lou and I are also the parents of Gene, the world's finest 23 year old, who went to Notre Dame University in Indiana on a full scholarship. He wishes I wouldn't demonstrate so much pride. I can't think of a good reason why I shouldn't be proud. His prime ambition is to compete with Bill Gates as an a collector of money.

He is a year out of college, now, and I think he might even reach his goal. Is fifty billion a lot?

As a youngster, I was one of six children whose father died when the oldest was fourteen. Watered down tomato soup got us through many days. And fried dough. I remember picking and cracking coal, hard anthracite that was strip-mined from the fields out beyond where we lived.

Although, when I was young, we lived in Scranton, Pennsylvania, it was on the edge of town and benefits for young people were available in those sloping fields. I did get poison sumac all over me much of the summer and had to be scrubbed raw to get that sticky stuff off. When I was thirteen years old, I picked and carried home thirteen tons of coal in burlap bags.

Our basement had a tunnel through picked and stacked coal, leading to the furnace. Many basements in our neighborhood looked the same way, and some back yards. I joined the National Guard when I was well under age because I heard they paid money. I also worked as a paper boy, bus boy, bakery worker, core sample driller, dishwasher, bus boy, library worker, waiter, bartender, stringer for local papers, painter, janitor, highway worker, life guard, and what seems like a hundred other jobs that got me through high school and paid the rent at home. In order for me to attend college, my mother said if I provided heat and the rent, I could go. When I had about finished high school, I took a test I believe was administered by the Ford Foundation and I won a scholarship. It seems to me - distant memories - that the Ford money might have been the seed money for today's National Merit Scholarships, I never checked. There were twenty-eight people in that graduating class. (Pre-Sputnik) One other was a scholarship winner. We were the only two in the history of the school. He died of cancer three years ago.

Also in that class was a Pulitzer Prize winning playwright and Academy award Nominee - he was the priest in THE EXORCIST, Jason Miller. His son is Jason Patric. Also in that class of thirteen boys and fifteen girls was John Walker, who became a spy for the Soviet Union, along with his recruited brother and son.

Most of my life, I suffered from hay fever and that showed up in spring and lasted until after the first frost. After chemo, (the first time) I had bouts of what seem like madness now, with blowing my nose and uncontrollable laughter and crying alternating. Dave Barry was hilarious to me, writing about how he thought his father was a nerd. I used up a fortune in tissues and I haven't had many allergies since those days of madness. If I eat too many peanuts, sometimes just a few, my throat closes up and I sneeze.

The diagnosis of MM came from one of those young doctors right out of school who practiced nearby and I placed myself in the hands of the best oncologist I could find and still stay home.

After I went through my first bone marrow aspiration at a local hospital, (there was some difficulty in verifying the diagnosis) I was transferred to the Mercy Hospital in Scranton. My first dealings with chemo were a revelation.

Losing my hair was the final reality that proved to some core of my understanding that I had a horrible illness and I cried. I had no idea I would do so. It was real! When I had a porta-cath installed, the left shoulder wasn't easily available because of the broken left shoulder. I had the porta-cath put in the right side. It was put in too deep, and when I took home a pump, for chemo, and the needle was too short. The result was the thing leaked and killed a lot of flesh on the right side of my chest, and left a big hole. A large hematoma formed and had to be removed. The doctor who had performed the surgery refused to do any more and sent me to a plastic surgeon, who put off action and stalled. As a result, I got blood poisoning , and I was told that I developed a 'stress ulcer' that burst and before I could get to intensive care, I lost six and one-half pints of blood.

The bleeding was made easy by a blood thinner (heparin), which causes severe internal bleeding if one takes Tylenol with it. Of course, I had been told to take Tylenol at the hospital. The heparin that was added to my blood stream was added to the excessive heparin in my blood stream as a result of calcium present because of the broken bones.

I heard most of what went on that night in intensive care. Twice someone announced that I had no pulse. The first time, about three in the morning, I got one eye open to see the concerned face of a guy I had gone to college with, Dr. Wright, who is six foot one and his head blocked the center of the ceiling light and gave him a halo. I knew he wasn't an angel. He was there because of our long relationship and simply that he cared. Later on, when I asked him if he remembered me attempting to point out that a pulse might be checked one more time, he remembered none of it. In order to check the condition of the ulcer, a tube was shoved down my throat while the nurse yelled, "Swallow! Swallow!" She poured water down my throat while she shouted. It was very unpleasant. My head spun and I passed out. I saw her a few weeks later and said, "Swallow!" and she was flabbergasted that I knew her. I did make it, however, and the plastic surgeon later patched up my chest with skin shaved from my right leg. Then I went through a tandem stem cell replacement. Much of what has happened to me during that time is foggy. My protocol dictated that I would have delivered two cycles of high-dose Melphalan at 200 mg/m2 with PCSC support. So I got two administrations of high dose Melphalan. I have been on six million units of Interon three times a week since then, sometimes with awful results - high fevers and shakes, especially. I have gotten my medical help from Mercy Hospital in Scranton, PA, and my oncologist is William Heim. If I make a mistake, it might be that when I should be moving on to another doctor, I will stay with him because I like him and know that he cares.

However, I never would have made it without the support of my wife of thirty years, Mary Lou. She has been fantastic, a shaker of worlds, an iron will and an inexhaustible, loving, tender and fierce giver of life. My wife.

After stem cell, I was stable for a while and on May 29, 1998, a tornado went through where we live and the next day, I went out and cut up branches and trees, and I worked too hard and found myself with an extensive collection of gnat bites. It was a serious mistake. My immune system must've been very compromised and the next day, I developed a goose egg sized plasmacytoma on the back of my head. On that same day, I contracted shingles.

I was very happy to get rid of interferon. I believe I was seriously depressed, even suicidal with it.

After that relapse, I signed up for a trial run of VAD plus PSC-833. After three cycles out of a scheduled six, I couldn't take it any more. I had muscle weakness in my upper legs - couldn't stand up without help
and the condition kept getting worse. I still had the plasmacytoma. Still do.

I recently started on Neurotonin, because of neuropathy that affects my feet. My right foot is especially painful, reaching to the iliac damage, affecting my entire leg.

During the VAD cycles, and the dex pulses I had during and in between, I contracted diabetes. Also, I have phlebitis. I now take Glucontrol for the diabetes. I take: A water pill, Glucontrol, Hydrocodon, Neurotonin, Aredia - monthly, Fosamax - daily, and an all purpose vitamin pill

I was on Morphine for pain for a while but got off it. Went wacky. Steroids in large doses also make me strange.

I'm interested in becoming part of a trial that uses Thalidomide. I have already contacted CELGENE and filled out some forms. I asked Dr. Heim for the prescription for neurotonin because of the reputation Thalidomide has for increasing neuropathy. Maybe I can be prepared for it. I have only taken neurotonin for about a week now. I would prefer trials where angiostatin and endostatin are used. 

 

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