Down 14 Pills Per Week – Just a Start

At the early February appointment at Penn, Dr. Rager apologized to Jeff for forgetting to order his chimerism test before he had his blood drawn.  She really wanted it done and asked if he would be so kind as to offer another vial of blood, another stick.  He replied easily, “Sure!”  Wow.  This is not pre-transplant Jeff.  Wimp no more.  We probably won’t hear before his May appointment whether his blood cells are still 100% donor cells.

Jeff worked a couple of hours at the end of February at a friend's house installing crown molding.  He went in and out of the house, making the necessary cuts.  As soon as I got home Jeff said, "Come into the bedroom where there's good light and look at this."  That was a worrisome request.  He sat on the bed under the ceiling light, lifted his chin a bit and said, "Look at my face." 

Jeff was concerned because his skin was breaking out and he'd noticed a new hard, white spot on his forehead.  Is that all?  It always takes Jeff awhile to admit he has a skin issue going on.  I had observed a few days prior that his skin was looking pocked and bumpy - weirdly textured.  It was a familiar look.  The last leg of the Cellcept taper had begun that Sunday so we supposed there might be some skin changes as a result.  We don't want GVHD to cause problems with his skin or any organ, for that matter.  I suggested the issue could be due to his not using sunscreen.  Jeff scoffed at this because it had been such a dreary day.  At the time, he was on two antibiotics which make him extremely susceptible to sunburn (his maintenance Sulfameth as well as Amoxicillin for a tooth infection).  And the last time he had a skin issue, the suspected cause was a reaction between his medications and sun exposure.  His next dermatology appointment isn't until June so we'll have to watch and see whether an earlier visit is advisable.

A couple of days of helping Kerry with his family room renovations provided lots of fun and camaraderie for Jeff and some welcome help for Kerry.  The next day I received a text at work at 1 p.m.  It said, “I just woke up.”  We’d had breakfast together before I left for work and I knew he was tired.  Even so, I was surprised at his ability to sleep that much and have no sleep issues the next night.  He took another long nap today. 

The Cellcept (immunosuppressant) taper is now complete!  That means 14 fewer pills per week.  Blood work scheduled in three weeks will determine whether he can come off of 17 more pills per week (antibiotic and antiviral).  Only one pill box is required now and no pills need to be taken on an empty stomach.  This is huge because, as Jeff says, “Now I can eat all the time!”  It means he no longer has to store water and a pill box on his nightstand.  And he no longer has to start his day by popping pills and swigging water as soon as his "neuropathetic" feet touch the floor.  With Cellcept out of the way, he is ready to concentrate on the neuropathy to see whether his issues can be dealt with better as this will largely determine his ability to work more.

We are still enjoying Jeff’s fabulous cooking.  He does most of the grocery shopping and cooking.  And he has been a very willing helper in procuring foods for my Food Writing class.  He bought Asian Pears, California and Florida avocados, mango and kiwi, for me to choose for my show-and-tell (well, they don’t really call it show-and-tell at college).  He went out special to buy me a brand of sandwich bread that did not contain high fructose corn syrup for my Food Science lesson (Assignment:  go one week without eating high fructose corn syrup and write down all the foods you had to avoid).  He went with me to Food Bazaar (which he thinks ought to be called “Food Bizarre”) to buy guinea pig (and rabbit and some international foods).  And he and Kerry were enthusiastic tasters of the Peruvian Soup and Cuy (guinea pig) that I prepared for the Unusual Foods unit.

Since our last blog entry, Jeff spent another day helping Hurricane Sandy victims.  Jeff says the volunteers who help "rebuild" hopeless properties are, nevertheless, restoring hope.  Pray for those who are still sorting out where they’ll live and work.