In August 1995, when I was first diagnosed with HCL, I was convinced that I would die very soon. Up to that point, I never thought that I would die. Dying always happened to someone else. It was a hypothetical concept. However, now a doctor told me that I had a disease for which I felt there was no escape. I had a friend who not only had HCL, but a variety of other cancers.  She talked with me and answered my primary question.  I asked, "Do you feel like you are going to die?"  She said, "Yes, and it is a cold, clammy feeling."

I felt that wave of cold too.  I thought about my life up to that point and all of the mistakes that I had made. I had not done as much as I could for other people.  But then I remembered Peter.  Peter had committed the worse sin of all, denying that he knew Jesus.  Jesus not only forgave him but built his church upon the rock he called Peter.  I realized that if Peter could be forgiven, even I could be forgiven. To be forgiven, I would have to turn my life around and I was already 49 years old.  I prayed at length, not to live, but to have the strength to face the will of God.

My oncologist had rarely treated cases of HCL.  Fortunately, he was up to date on the necessary treatment.  He implanted a catheter in my chest and I received 2-CdA, Cladribine, (Leustatin) for 24 hours per day for 7days.  My platelets were so low that I had to have two units of platelets after the operation to implant the catheter so that my blood would clot.

The 2-CdA worked by destroying my white cells (I was told that HCL is a type of white cell).  Immediately after treatment, I contracted an infection demonstrated by high fever and a lump the size of an orange under my jaw.  I was hospitalized for about 10 days.  During that time, I was treated with blood transfusions, antibiotics and neupogen (a white cell colonization drug).  In the end, the infection was gone and I was back home from the hospital.  However, I continued to be depressed and had trouble sleeping.  The doctor treated me with an anti-depressant, which only mildly helped my depression. It did help me to sleep.

Staying at home focused my mind on the immediate possibility of my death and every pain in my body. There was some fever connected with the destruction of the white cells, which I exaggerated in my mind as a sign that the end was near.  It did not help when the doctor told me that this chemotherapy achieved remission in 85% of the patients.  I continued to pray for strength to face the will of God.

In October 1995, I had some improvement in my blood counts and I was back to work.  I worked as an Assistant Superintendent of a youth center for the Illinois Department of Corrections. Thus far, the kids that I supervised, had sent me banners and homemade "get well" cards.  They indicated that they were praying for my survival.  I was very impressed by this simple gesture that kids, whom others (parents, police, and judges) had given up on as bad kids, would do such a good thing.  I had to get back to work for two reasons.  First, if I were working, I would take my mind off of the illness.  Second, and most important, I was determined to do what I could to help troubled children, whom had helped me.

I had refused to have my implanted catheter removed as advised by the doctor.  I told him that I did not repeat that operation if I did not achieve remission.  I traveled with that tube in my chest from Chicago to St. Louis to see my oldest son marry.  Shortly after the wedding, I paid the price.  I contracted a second infection that again required hospitalization.  My fever was so high that the doctor had my entire body packed in ice for most of a day.  I hardly felt it.

In time, the infection passed and the doctor finally convinced me that it was in my best interest to have the catheter removed.  He pointed out that the infection might have come from the catheter.  After it was removed, he kept me in the hospital for a final day for observation.  During that day, I was propped up in my bed looking out the window.  Someone entered the room from behind me and put their hand on my shoulder.  As I turned around, I began to greet my father.  For some reason, before I saw who it was, I thought it was my father.  In that split second, I forgot that my father had died some years before.  When I turned around, I found that I could see no one in the room.  Yet there was a hand on my shoulder, which was slowly losing its grip.  It was the most comforting feeling of my entire life.

This may be a good time to tell the reader that I was not on drugs or sleepy at the time of this incident. Rather I was very clear.  I am also a person who does not believe in UFO’s, aliens, and previously to this incident, supernatural occurrences.  I was also clear that I did not imagine a hand on my shoulder.  There was someone in the room with me, and I had initially thought it was my father.  I do not have an explanation for what happened to me.  I am willing to accept that it was my father, an angel, or perhaps the hand of God.  I do not really know.  I do know that it was comforting and defined a turning point in my life.  After the incident, I was no longer depressed.  I knew that I needed to do more for other people and to not worry about my illness.

By December 1995, my blood counts were up to normal.  A bone marrow biopsy and CAT scan showed no HCL – complete remission!  I remember coming home from the doctor’s office that day.  The sky was bluer than it ever had been.  The grass was as green as I had ever seen it, even though it was December in Chicago.  I was doing better at work.  I got involved with the Hairy Cell Leukemia Research Foundation, who had been a voice to me since I had been diagnosed with HCL.  I was impressed with the fact that there were no paid staff and over 97% of their funds went directly to research.  Within a year, I started this web site for the Foundation because I was convinced that HCL patients needed to talk with others that had survived HCL.  Since that time, I have personally answered every letter from HCL patients and their loved ones.

In 1999, the Illinois Department of Corrections changed management and direction.  It became less of a helping organization and more of a jail for kids.  I retired and went to Florida where there was a job waiting for me to be Superintendent of a youth center for the Department of Juvenile Justice.  From there I moved to Las Vegas to open the first maximum security facility for juveniles in Nevada.  Even though there were committed staff at each of these youth centers, I did not feel like I was doing anything for the kids.  If I learned anything from HCL, it was that time was precious.  I returned to Florida where I found a job as a counselor with the Florida Keys Children’s Shelter.  It appeared to be the mission that I was looking for.

HCL had not gone away.  In December 2000, a bone marrow biopsy found 25% HCL.  I repeated 2-CdA in April, 2001, when my white blood count dropped to 1.9.  This time, precautions were taken not to repeat the infections.  I started on antibiotics immediately after the 2-CdA treatment.  In addition, I had daily shots of neupogen to build up my neutrophil white cells.  There were no infections and my recovery was uneventful.  I was able to continue working as a counselor through the treatment and afterwards.  By August, a bone marrow biopsy showed complete remission with no trace of HCL.  I remain in remission.

HCL is a reminder of my own mortality. I remember the lines from the old Leonard Cohen song, "Suzanne:"

And when he knew for certain

Only drowning men could see him

He said "All men will be sailors then

Until the sea shall free them"

It is unfortunate that it took something as terrible as HCL to bring happiness to my life.  But it did.  As bad as HCL might be, the quality of my life has improved as a result of the experience.  Further, I have found that the treatments work and there is hope where, at one time, I thought there was no hope.