Day 259 – Mr. Cranky Pants

Since starting on steroids in December, Jeff has been waking up at 12:30 a.m., 2 a.m., or 4 a.m. jazzed and ready to start his day.  He usually resists getting up and listens to an audio book on his iPad instead.  I, on the other hand, have been sleeping really, really well.  In fact, I would say for a woman at my stage of life, I get excellent nights of sleep.  This week, however, we both suffered from a little insomnia.  It was probably oncologist-appointment anxiety.  Neither of us worries overly much about Jeff’s condition right now and we do love Dr. Porter, Dr. Rager and the staff at the Perelman Center.  Even so, anticipating a doctor visit is stress-producing.

We had a lot to report to Dr. Rager and Dr. Porter.  Jeff has had nose bleeds, continued problems with his fingernails, an infected toe, a broken tooth, pain under his left arm, grouchiness, a changing mark on his back, profuse sweating, swelling at the ankles and a very puffy face.  It wasn’t necessary to report this last symptom because Dr. Porter noted the pudgy face as soon as he walked into the exam room.  We forgot to mention his hand cramps but we already know that it, as well as most of the things on our list, is a side effect of the steroids.

Among Jeff’s pre-transplant doctor visits was one with a dermatologist at the Perelman Center.  She had suggested Jeff visit her again at some point after transplant.  We asked Dr. Porter if it was time for Jeff to see the dermatologist again.  He agreed it was.  He also said it was safe for Jeff to see a podiatrist about his infected toe.  The toe that lost its nail a few months ago is trying to grow back but it is ingrown, bloody and sore.

These are minor issues, though.  Dr. Porter said Jeff is “doing great.”  He said, “I know it feels like you have been doing this forever but it is early yet.”  He was referring to the year-long recovery.  There are still 106 days to go.  The goal now, Dr. Porter said, is to get Jeff down to 20 mg of Prednisone in the next three weeks, check his liver function again, and then, if all is well, taper to 20 mg every other day.  We left the office before Jeff’s labs were back but with instructions for the next phase of the taper.

Dr. Porter always asks what Jeff does to build his strength.  He does his PT exercises and keeps himself busy.  Recent projects include running new telephone wires at my parents’ house and helping our neighbor get his brother’s house ready for sale which involved some light carpentry and digging a drainage hole in the yard.  At our house he has been cleaning and doing some awesome cooking – best lasagna ever!  He seldom naps anymore.

The steroids cause crankiness.  We were warned.  Jeff has had a few quick flare-ups, most recently on Sunday while we were getting ready to leave the house for church.  It involved a donut and an agitated insomniac and, well, someone got her feelings hurt.  If you want the full story ask me.  You could ask Jeff but I’m pretty sure Mr. Cranky Pants’ version would be different than mine.

You may have seen the news reports this week from Rider University.  A norovirus outbreak sickened many students.  Some of Keith’s friends were sick but he seems to have escaped this one so far.  Evidently, some staff members were affected but no one in my office, thankfully.  We don’t want to bring that home!

Jeff and I shared pizza for dinner tonight.  We ordered plenty, expecting to have leftovers.  However, Jeff’s incredible steroid-induced appetite kicked in and he ate 11 slices of thin-crust pizza.  He was seated in the restaurant with a good view of the dessert case and could not resist having chocolate cake for dessert!  Amazing!

Over dinner, we discussed how it feels to get good reports from the doctor.  We are starting to allow ourselves to believe that Jeff will be well for a long, long time.  The risk of GVHD continues as does the potential for problems associated with the harsh pre-transplant conditioning.  And, of course, there is the disease itself.  It is difficult to put those fears away completely.  We both feel that Jeff is cured but you just never know…

This morning when our train arrived in University City, a man and woman were asking how to get to the Perelman Center.  I answered gleefully, “We’re going there.  We’ll show you the way.”  The woman said, “But you’re walking, aren’t you?”  I saw then that she wasn’t going to be able to walk the block to the front door.  She was too sick.  How awful that she would have to wait for a taxi.  As we began walking, Jeff saw a taxi and tried to flag it down for them but it didn’t stop.  We wondered how annoyed a taxi driver might get with such a short fare.  I wonder whether there is a better solution available.  We thought it might be possible to bring a wheelchair from the lobby of the Perelman Center.  Prayers, please, for the woman we could not help.