Klingons and Cellcept

Two weekends in a row Jeff developed a goose egg on his forehead (and one behind his ear) without having injured himself in any obvious way.  He didn’t walk into a door, didn’t hit himself with a hammer, didn’t bump heads with me – or anyone else.  A giant bump just popped out mysteriously over the course of a quiet evening at home and took a couple of days to disappear.  On both occasions we had been in the hot tub an hour or so before we noticed the bumps so on a third weekend, we gave the hot tub another try.  No goose egg.  Jeff was relieved to not have that Klingon look. 

Last Friday we went to the Perelman Center for Jeff’s labs.  While we were there we went over to Penn’s Rhoads 7 to see our friend, Janice, from Gilda’s Club.  We had to wash our hands before entering her room and Jeff was repulsed by the smell of the familiar hospital soap but he washed anyway.  Janice had had her autologous stem cell transplant the day before and she was sitting up in bed looking great!  Autologous stem cell transplant is a much shorter process than BMT.  Janice was admitted Tuesday, had two days of chemo and then received her own cells from two small bags containing “pale red” blood product.  We did not intend to stay long with Janice because we never expected that she would be able to carry on a conversation.  But she could! 

Janice had some nausea but otherwise didn’t feel too badly.  When the nausea got the better of her, Jeff and I excused ourselves to give her some privacy.  I returned to the room when it sounded as though things had settled down a bit.  Jeff was not keen to go back in, though.  He wandered the halls and found his old nurse, Alana, who had prayed with him during his stay here.  She did not recognize him.  He told her, “You’ll remember me when you see my wife.”  He brought her to Janice’s room. 

When Alana saw me, she shouted, “Oh, I know you!”  She hugged me and gushed over how well Jeff looked.  I told Jeff he should have thrown his head back and made himself look sickly so that Alana would have an easier time remembering him.  Alana said she was having a hard day (we didn’t want to think about what that means in oncology) and that Jeff cheered her up.  She took us to the nurse manager’s office and introduced us to the young woman, new to the job since Jeff’s stay nearly two years ago.

We left Penn and headed to the Reading Terminal Market for lunch and some cheese shopping.  Home by train.  A tiring day.

Yesterday Jeff’s lab results were finally posted on Penn’s online system.  I checked them from work and called Jeff to report.  “Your hemoglobin is 14.  That’s about as good as it has ever been since transplant.” 

“What’s the bad news, then?” he asked.

“Well, I don’t know if it’s really bad but your eosinophils are elevated like you are having an allergic reaction and your liver function tests are high, too.  How long do you want to wait to call Dr. Porter and see whether you need to do something about that?”

We debated whether to call immediately or wait and see if the doctors were concerned, too.  We decided to wait but by the end of the day, Dr. Allison called Jeff to put him back on Cellcept.  She was not overly concerned.  Labs were ordered for 2-3 weeks from now to make sure the Cellcept is working to keep things in check.

Thinking of Jeff’s donor and hoping she has a Happy Easter.  Happy Easter to one and all!

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.