Treatment Anxiety: Fear of pain

On Thursday (June 13) afternoon Martha and I went to a "What to expect during Chemo" class.  The nurse told us about symptoms such as fatigue, hair loss, fluid loss, and others. I had not slept well last week so I was tired and more susceptible to suggestion.  As she mentioned some of the symptoms I thought "I think I have that right now!" (not hair loss yet, of course).  When the class finished I felt bad enough that I was going to skip my daily swim.  But she had also strongly recommended moderate aerobic exercise during chemo, so I decided to swim a few laps and see how I felt.  Turns out I felt great so I swam a whole workout and really glad I had not skipped.

That night around 2:45a I woke up to go to the bathroom and that's when the anxiety hit.  The chemo-expectation class had 7 or 8 cancer patients with some family members.  I am pretty sure the guy sitting next to Martha had the same diagnosis as me: esophageal cancer.  The nurse kind of said that and asked if we'd had feeding tubes?  He had one installed.  I had not.  At the time I figured that was good for me, "my cancer is not as advanced as his," I thought.  The previous week I talked to a swimming buddy who has had the same treatment I've begun.  His cancer was definitely more advanced than mine.  He talked about needing a feeding tube installed part way through chemo/radiation and how bad things got.  When Martha and I met with Dr. Dunst a few weeks ago, she also talked about a feeding tube, but at 2:45a all I could remember was "that a feeding tube might be necessary."  Earlier this same Thursday I met with a radiation oncologist and he had said that about 1-1/2 weeks into radiation I was going to start feeling pain when I ate/swallowed.  They would  manage the pain with "lydocain" (I think) which I will swallow to numb my esophagus so I can eat, but he also said after a while I'll need real pain medication.

At 2:45a my subconscious had assembled all this data and presented it to my conscious.  I began thinking about how bad it might really be and tried to figure how long the "really bad" period might be.  I've already been told that the worst period will be the two weeks after chemo and radiation are finished.  So I'm guessing the pain starts at week 1-1/2, ramps up day by day until it hits a maximum, then stays constant for the rest of treatment plus two weeks.  Treatment is about 6 weeks, so worst case of max pain is the final 4 weeks of treatment + 2 week after =  6 weeks.  Whoa!  This is when the anxiety, actually fear, set in.  How bad will this pain be?  Could it get so bad that I'll actually want a feeding tube installed?  Then it hit me that some doctors may automatically install feeding tubes in their esophageal cancer patients -- it must be necessary most of the time.

At this point other memories started popping up.  My chemo nurse, Rob, noticed that I'd lost 7-8 pounds over the previous 10-12 weeks.  That's good, right?  I've been dieting and exercising extra since January.  He strongly suggested that now was not the time to try and lose weight.  Some of the nurses at radiation told me "You look in great health for esophageal cancer treatment."

I pointed at the spare tire around my waste and said, "I feel in pretty good shape, except for this."

The both replied, "No, that's a good thing."

So at 3:00a my brain factors those comments into the mix and now I feel like I am finally realizing that I have a really bad stretch ahead of me.  I couldn't stop thinking about this.  Sleep went out the window.  Finally at 3:45a I got up, set up my laptop, and started working (at my job, I can work from home as easily as from the office).  I was able to successfully get my mind temporarily off the worry about this treatment, but it haunted me all day and all this weekend.  This (the haunting) was exacerbated Friday because I was pretty tired all day from lack of sleep.

Martha had a "grads and dads" dinner Friday night.  Our kids were there, except Zachary who is in Spokane working for the summer, also Martha's Dad and Amy, Paul's girlfriend.  I was glad they were there and I had a few hours where I did not think about this.  After they left I was pretty tired and slept well Friday night.

Saturday the anxiety came up again.  I talked about it with Martha -- it is good to have someone close at your side.  The anxiety levels have come down quite a bit from Thursday night.  But I would be lying if I said I'm not pretty concerned about how this is going to go.