Day 277 – Pills and Projects

In the last week, Jeff managed to goof up his pills twice.  On Saturday evening, when his pill box should have had two evening pills left for the week, he had no Saturday pills left at all.  However, his Wednesday evening box still had two.  He thinks he missed the Wednesday evening pills altogether and then took evening pills twice on Friday night!  The evening pills are only prophylactic anti-viral and anti-fungal so it was probably no big deal.  We both laughed about it but vowed to pay attention to what he takes each morning.  It might cause a problem to goof up his Prednisone doses.

Jeff has successfully tapered to 20 mg of Prednisone per day.  He will stay on that dosage until he sees Dr. Porter again in a couple of weeks.  Dr. Porter had said that side effects will diminish at 20 mg so, hopefully, Jeff will have relief soon from the cramping in his fingers, weak leg muscles, puffy face, gargantuan appetite, etc.  He has been tired lately but I don’t know whether that is due to the Prednisone.

On Monday morning, Jeff carried his latest project downstairs to the shop in case the podiatrist caused him too much pain to carry it down after his appointment.  Dr. Schnitzer had previously instructed Jeff to trim his nails straight across but the “baby,” ingrown big toenail required careful trimming on an angle.  Dr. Schnitzer is a kidney transplant patient so the two of them compared war stories.  Dr. Schnitzer was very concerned about Jeff’s condition and suggested he look up Cushing’s Syndrome, a risk of long-term steroid use.  Jeff wondered whether he was suggesting Jeff should allow his GVHD to run amok.  Jeff called me at work with a report on the visit, “I paid $25 to have two toenails trimmed.”  At least they don’t hurt.

Jeff’s truck was in the shop for several days for some warranty repairs on the transmission.  We were doing some car-sharing. I car-pooled with a co-worker for a couple of days so he could have my car.  Keith and I were driving home from Rider one night when I asked him to call his dad.  I knew Jeff was preparing homemade pizzas and that he hadn’t had a car to run out for ingredients.  Keith asked his dad whether he needed us to stop for supplies.  No.  Jeff had everything we needed.  Keith hung up the phone as we turned onto our street. 

As we neared our house, I told Keith that Dad did our laundry and noticed that my pants needed to be hemmed.  He took care of those pants right away!  I would have kept a pile of mending to take care of when there were several things to repair.  I related a conversation Jeff and I had had.  I remarked that Jeff was a better homemaker than I ever was when I was working part-time.  Jeff had been nice enough to say, “You were taking care of children, too, though.”  I told Keith that his dad was always the kind of guy who would fix something as soon as he sees the need.  I pulled into the driveway and pushed the remote to open the garage door.  As if on cue, Jeff’s wheelbarrow came into view behind the garage door, occupying the space where the truck is usually parked.  It was disassembled, the tub inverted on sawhorses and freshly painted.  Keith said, “Like a wheelbarrow, for example?”

That impulse to fix things sometimes wanes mid-project.  We have about 40 bathroom floor tiles which have been marked with X’s.  They have been that way for about a week and we have gotten sort of used to the look which is reminiscent of chicken footprints.  The marked tiles are, I am told, going to be replaced.  I have faith that they will be, someday. 

Yesterday Kerry & Theresa had settlement on their new house.  They presented Jeff with a key.  I wonder which projects will appeal to Jeff first – our floor tiles or something at the new house.  We’ll see! 

Day 270 – Lenten Sacrifice?

This weekend Jeff washed my car and trimmed the grapevine.  On Monday morning he took the train to the Perelman Center for his labs and then waited in the freezing cold at the University City train station for 40 minutes.  There is a roof there but not a good inside waiting area.  He was cold and very tired when he got home.  Maybe it was all the fresh air he had been getting that caused him to nap Monday afternoon. 

He regularly falls asleep within minutes of sitting down to watch TV and so I suggested he stand up to watch a movie he wanted to see.  Surely he wouldn’t fall asleep while standing!  He didn’t take my advice but, with effort, he was able to see most of the movie with his eyes open.  He sleeps soundly (and occasionally snores very loudly) in the early evening but still cannot manage to sleep all night.

Jeff’s sore toe prevents him going for walks with me and limits his activities a little bit in other ways.  He made an appointment with the podiatrist for Monday.  Hopefully, he can get active again very soon thereafter.

Many people are noticing the effects of steroids on Jeff’s face.  He calls it “chipmunk face.”  Most people comment that he looks healthy nevertheless.  Our neighbor, who has limited command of the English language and yet favors the versatility of the F word, asked Jeff, “What the !%&# happened to you?!”  I guess Jeff does look quite changed on some days. 

I was beginning to think it was about time for us to get another newsletter from the National Marrow Donor Program (BeTheMatch.org) when the next issue arrived in the mail.  Jeff was starting to talk about how time flies and that before we know it we’ll be celebrating the one-year anniversary of his transplant, his “first birthday.”  The newsletter’s focus was on “Your One-Year Anniversary” and “Preparing for Your One-Year Exam.”  There was a good article which answered some of our questions about Social Security Disability benefits and another called, “Initiating Contact with Your Donor.”  All good, timely stuff. 

I asked Jeff whether he would give up ice cream for Lent as he has done in the past.  He said he was thinking about giving up pills for Lent.  Ha!  We’ll see about the ice cream…

Day 267 – Thick Skin, Thin Skin

Jeff received high doses of Methotrexate as part of his treatment in the hospital last May and June.  This week’s news reports that there is a shortage of Methotrexate, used for treatment of pediatric leukemia, hit me like a brick.  I have strange, mixed feelings about the news.  Can I describe it as stingy? grateful that Jeff got what he needed? empathy for the kids who are waiting for their supplies? pity for their parents?  anger at the the drug companies who should have foreseen the problem?  It turns my stomach to think about it.  I wonder whether there is a suitable substitute for adult patients and whether Jeff’s transplant would have been possible without it. 

Jeff has still not made an appointment with the podiatrist because he is not looking forward to treatment for his ingrown toenail.  He is afraid the podiatrist will remove the young, thin toenail and he’ll have to start growing yet another one.  Some days it oozes so he really cannot put it off much longer.

His fingernails, too, are still paper-thin.  He isn’t wearing Band Aids to protect them as often as he had been but the nails still tend to fold over and split.  He keeps nail files around the house for his constant “preening.”  Despite his weak nails, he rubs my back on occasion.  One night he scratched my back, truly believing he was doing a nice thing for me.  I appreciated his thoughtfulness and did not want to tell him how much his sharp nails hurt.  I foolishly kept my mouth shut.  The next day he saw my back and said, “It looks like you’ve been whipped.  Is that from me?!” 

I related this story to Kerry, Keith and Theresa when they were here for dinner.  I told them how easily Jeff can cut his face, sometimes just with a simple gesture of running his hand along his forehead.  I told them that, when they were newborn, we used to put socks on their little hands to prevent their tiny fingernails from scratching their faces.  Keith asked, “Are you suggesting we put socks on Dad’s hands?”  Honestly, it had crossed my mind. 

While crawling around on the floor doing some repair job or another, Jeff rubbed the skin off his elbows.  He wasn’t even aware he had done this until he showered that night.  He said he thinks his skin is thin and more susceptible than usual to a little brush burn.  And so, here is another way Jeff and I are (or have?) Yin and Yang: thin skin and thick skin.

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.