The Scariest Words Revisited

When I first learned I had cancer, I started this blog.  It has garnered enormous interest, tens of thousands of views, and many cancer fighters have expressed interest and gratitude for it.

I was re-reading my blog today and realized that there are a lot of blanks in the diary – I left out things that I didn’t understand, or were afraid to discuss.,  So I will go, post-by-post, and give you a “revisited” entry with greater detail.  Read the original post first, and then come back and read this expanded version.

ORIGINAL POST:  08/27/08 The Scariest Words

There are a lot of blanks in this blog post.  If you look at the index of entries on the blog, you will see that there is nearly two weeks between the two posts.  I suspect I have cancer in this post, and then I jump right into the fact that I have cancer in the next post.  A two-week gap is a long time when you have cancer.  There’s a reason why I didn’t blog for two weeks, though.

What happened in between?  A lot.  Let me fill in the blanks for you.

In this two-week span, I was officially diagnosed with cancer, had my entire world turned upside down, and was forced to deal with my mortality, the knowledge that I was fighting a deadly disease, and trying to figure out what this meant to me and how to deal with my new world.

My son and me 3-weeks before the "lump" was found.

Let’s talk about the sudden lump in my neck.  The lump came on suddenly.  I had long hair at the time that, for the most part, covered the lump, but I did brush it every day.  I washed it daily.  I would have noticed if the lump had been there for a while.  I have even reviewed picture of myself three weeks before the lump was discovered and have determined that there was no lump on my next in those pictures.  On August 2, 2008, Carey and I took my son Matthew to a Valient Thorr concert at the Back Booth in downtown Orlando.  I had a picture taken with Matthew and you can clearly see that there is no lump on the left side of my neck.  Somewhere between August 2, 2008 and August 23rd 2008 that lump appeared.

It was a big lump.  When found, it was clearly visible.  Pulling my hair away from my neck showed an obvious and acute swelling on the left side of my neck.  It was warm to the touch, slightly warmer than the surrounding skin.  It didn’t give when pressed; it was hard like a massive pimple waiting to be popped.  It was so obviously a serious issue that there was no doubt that I needed to see a doctor.

Dinner that night was a distracted and confused affair for me.  I have vague memories of talking to our friends, making polite conversation, and trying to interact with everyone.  I wouldn’t be surprised if they remember me as aloof and distant.  My mind kept going to the lump and twice during dinner I excused myself to go to the bathroom and examine it in the mirror.

I have, over time, realized that everything bad happens on a Friday night or on a Saturday.  It seems that there is a universal law that states that events occur at the least convenient time.  We found the lump on a Saturday, meaning that I couldn’t get in to see my doctor until Monday.  I didn’t consider a non-painful lump in my neck to be emergency room material, so I had to sit and worry and fret all day on Sunday.  I had to go to sleep Saturday and Sunday with the vague worry and uncertainty, fearing that something was wrong, and having very poor sleep as a result.  I was forced to wait until 8:00AM on Monday morning before I could call my doctor.

Let me describe the whirlwind tour of doctors I had those first few days.  I went first to my primary care physician, Dr. J.  Dr. J was, literally, the family doctor.  When I was 16-years-old he was the doctor who diagnosed and treated me through mononucleosis.  He is the PCP for my father, my mother, my brother, my grandmother, and my grandfather.

I didn’t actually get to see Dr. J, though.  I saw his PA, Dorie.  When I was ushered into the exam room, she moved my long hair out of the way and immediately expressed surprise by the lump in my neck.

“That’s not normal,” she said immediately.  I quipped that I wouldn’t have come if this was a normal condition for my neck.  Dorie didn’t respond to my joking, though, and proceeded to feel the lump and noted that it was hard and solid to the touch.

She immediately left and pulled in another PA to examine me as well.  It was at this point that I started to think to myself that this was serious.  Carey was with me, though, and we both shrugged it off, foolishly optimistic, and kept assuming it was an infection.

I brought up the infection theory to Dorie.  She reluctantly agreed that it might be an infection, but she was worried that it was “something worse.”  I suspected that cancer was on her mind, but I didn’t want her to say it, so I kept insisting that it was probably an infection.   Cancer was just not an option for me.  I couldn’t imagine it.  I couldn’t conceive of it.

After Dorie confessed that she didn’t know what my lump was but suspected that it was something that needed immediate attention, she set me up with a CT scan at one of the local hospitals, about three miles from the office.  I describe the CT scan process in greater detail later in this book.  I had a number of scans and they were prime subjects for my blogs.

What I will say about this first CT scan, though, is that it was a terrifying experience.  Not because it was painful; it was not.  Not because it CT scans are radiation; I’ve had plenty of X-rays in my life and don’t fear them.

It was terrifying because for those few minutes when the scan is occurring I was utterly alone, lying on a table in the middle of a massive machine.  All I could see was the machine surrounding me.  All I could hear was the hum of the equipment.  All I could do was lie there and ponder the predicament I had suddenly found myself in.

It’s those times when you are alone that you really have to face your fears.  Without the constant stimulation of driving a car, talking to other people, reading a book, or doing busy work your mind if forced to consider the things you would rather not think about.

I found myself thinking, for the first time, that something was very wrong with me.  And that thought terrified me.