Hey 19

Nineteen years ago today, I was diagnosed with Chronic Lymphocytic Leukemia, CLL.

I had just returned from a week’s vacation. The next to the last day of my vacation, August 10th, I had a physical.

There was nothing wrong with me, but I recently turned 50, and Eileen was after me to have a physical. Three years earlier, my brother, Michael, died at the age of 53, so she was after me to have a physical.

August 14th started off with a cup of coffee and a little catch-up. Office operations were running smoothly, much more so than last year when we implemented a new information system to combat Y2K. Do you remember when Y2K was our biggest worry?

Anyway, about an hour into my day, I received a call from my doctor’s office. I was not concerned in the least until I heard the voice on the phone. It was my doctor and not a secretary or nurse. I was expecting a “You’re doing ok Mr. Newell,” type of call. When I heard the doctor himself, let’s just say he had my attention.

He went on to tell me that the blood test revealed that I had leukemia. He said Chronic Lymphocytic, but all I heard was leukemia.

He added that, as cancers go, this is a “good one.” That drives CLL patients crazy.

Most CLL patients live a long life and die of something unrelated to CLL, I was told.

Still, leukemia is a scary word.

Being a man of the 21st Century as soon as I got off the phone, I hit the internet.

I found a lot of information, some of which validated what the doctor had told me. Still, there was enough uncertainty to concern me.

After my abbreviated research, I knew I had to tell Eileen.

Perhaps because I was scared, (writing this is the first time that thought ever came to mind), or because I didn’t want to prolong the agony, I decided to call her.

Now, to be fair, Eileen had just returned from vacation too, and now I was going to inflict her with something else to worry about instead of Central Suffolk Hospital.

There was a Seinfeld episode where George is taking time off from working for the Yankees, but he leaves his car in the Yankee parking lot. Jerry and Kramer bang it up and return it to the lot, and Steinbrenner is made to believe that George is dead. Eventually, George’s father, Frank Costanza, is informed. Frank calls Jerry to tell him and leaves a message.

In his famously staccato vocal style, Frank erupted, “Jerry, Frank Costanza, Steinbrenner is here, George is dead, call me back.”

My recollection of my call to Eileen telling her I had leukemia was similar in style and tone. However, I didn’t leave a message, I spoke to her.

I said all the right things. I feel great. I can live a long life. Probably won’t need to be treated. Etc etc. etc.

Of course, I only learned years later that she focused on the word leukemia and very little else.

But, instead of hitting the internet and worrying in a vacuum, Eileen sprang into action. I had an appointment with an oncologist the next day, a bone marrow biopsy the day after that, and then a sit-down with my new oncologist…soon-to-be friend…Dr. Louis Avvento.

Back in 2000, there were new drugs on the horizon, and the prognosis for a good outcome was certainly a realistic belief. However, I was advised that a ten-year survival was undoubtedly achievable.

Now, don’t get me wrong. I was grateful that death was not imminent. Nevertheless, dying at or before attaining the age of 60 was not what I had hoped for. But, the hope that these new therapies promised was enough for me to have a positive outlook.

To be honest, I didn’t even think of outcomes or how many years I might have. I just did what I was told and went for chemo every 20 days, and after six courses of the treatment, I went seven years before needing another round.

One of the things that I experienced was a sort of epiphany. I had spent the greater part of 1999 stressing out about my job and the possibility of getting fired. I was under enormous pressure and it was getting to me. It affected my ability to enjoy life.

2000 was better as our new computer system was operational and the pressure eased up a bit.

But, when I received my diagnosis and started chemotherapy, I realized how stupid I was to let a job affect me the way it had. I let people push me around and make it appear that it was my fault that they bought a crappy system and didn’t know how to implement it.

I let all of that angst go. I had cancer. You’re going to put pressure on me? Not likely.

I remember later that year when the IT folk told us we had to go through an upgrade. I went nuts at a meeting saying, quite loudly, that we just got the bloody thing running. We had version 17 of the system and now had to go to 20. I was told by our IT person that it wasn’t that big a deal. In fact, “20 is 17 without the bugs!”

I replied, “I don’t think you told us that when you sold us 17.”

The point is I might have been running scared but it was because of leukemia, not a job

Of course, this epiphany was short-lived as I did return to worrying about mundane things like bills and mortgage and my job. But I was able to keep things in perspective

I moved on to a number of different schools but then found myself in another challenging position. Perhaps not coincidentally, I was then in need of additional treatment.

That second treatment was a new drug that had been developed, which resulted in a nine-year remission.

When my numbers started to go up my doctor, and I decided it was time to try the new drug that had been developed. So, in September of 2016, I began a one-pill-a-day therapy that has kept me in another remission.

This coincided with my retiring and moving to Florida with Eileen.

So, back on this day in 2000, I began a journey that was a little frightening but I always felt I was in good hands.

The ten-year promise morphed into 19 years and, God willing, more to follow.


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