Day 190 – Rx Minus 3, Plus 1 and an Oops!

Disclaimer:  Another long one.  Get your drink of choice and settle in. 

Thursday night we went to the Kimmel Center to hear the Philadelphia Orchestra.  Marin Alsop, Music Director of the Baltimore Symphony (formerly of “Tracy’s” Colorado Symphony), conducted.  Although we went because I am a mini-fan of Marin Alsop, the program included an organ piece (Barber’s Toccata festiva for any of you in the know about organ music) performed by Ken Cowan, a Westminster/Rider University professor.  It had an awesome pedal solo (Look ma! No hands!).  A Copland clarinet piece and Dvorak’s “Sounds from the New World” were also on the program.

We had awesome seats in the cheapy section, Tier 3.  Jeff became slightly winded walking up all those stairs and the effort was worth it.  You could really see the violin- shape of the hall, something we could not appreciate the other times we had been there, when our pocketbook allowed for better seats.  As we entered the hall, the usher heard us talking about the view and told us the sound was good at this level, too.  In fact, the sound and view was a lot better than the time we had orchestra seats so close to the stage that we all wanted to go home and polish our shoes. 

Unfortunately, Jeff had showered and dressed for the evening while I was at work.  He applied lotion everywhere he could reach but I was not there to slather his back.  Between the two of us, we usually manage to keep his rough, dry GVHD skin fairly supple.  During the concert, his back started to itch.  I could see him doing the horse-on-a-fencepost thing on the back of his chair.  I rubbed his back during intermission; I didn’t feel it would be appropriate to un-tuck his shirt and scratch his back but we both wished I could. 

We spent the night at Kim’s place in the city since Jeff had an appointment with Dr. Porter at HUP in the morning.  Kim gave us her queen bed and she took the pull-out sofa in the living room.  I had stayed with Kim for six weeks when Jeff was hospitalized; this was Jeff’s first time as Kim’s overnight guest.  He enjoyed himself so much that he announced in the morning, “We have to get you into a two-bedroom apartment!” to which Kim only rolled her eyes. 

Kim asked us whether Mr. Maia bothered us through the night.  Jeff said, “Not enough.”  Mr. Maia is a fun cat – playful and social, a good companion for Kim.  Kim fed us a lovely breakfast and off we went to HUP.

Jeff had labs done and then we waited, as usual, a long time to see Dr. Porter.  We don’t mind the wait because we know what it is like to have his full attention.  The time and care he takes is necessary to understand the disease, treatments, side-effects, potential side-effects, etc.  It is a lot to take in.  We think he must wait for some of the labs to be processed before he sees his patients.  Thus, the delay.  Even though we respect Dr. Porter immensely, visits to his office can still be a little traumatic.  If I forget to take something for us to do, a crossword puzzle or something to read, I get punchy waiting in the exam room.  I try to be patient while waiting with Patient Jeff who may or may not be feeling anxious himself.  Today, evidently, every time I felt anxious, I would lean over and plant a kiss on Jeff’s cheek.  I didn’t realize how often I’d done that until he complained, “Stop kissing me!  Scratch my back if you have to touch me!”  Which, of course, I did and the activity was calming – maybe for both of us.

Jeff sat in his chair, hands on knees, head in hands, staring at the floor.  He said, “Gross!  Someone trimmed their nails in here!  Who would do that?”  Sure enough, a collection of fingernails was scattered on the floor.  It didn’t seem fair, Jeff thought, that he can’t grow good nails and there someone is cutting them off and leaving them on the floor!  I suggested he collect them to glue on his own fingers. 

Finally, Dr. Alison Rager Segal (not sure of the spelling of her married name) entered the exam room.  I thought, “I know her!”  She was the oncology fellow who was present during Jeff’s transplant.  She identified herself just that way but I remembered her very well.  Now she works for Dr. Porter.  Later, Dr. Porter asked Jeff whether he remembered her.  Jeff wasn’t in great shape that day so he only thought she “looked familiar.”  He says all he remembers about transplant day is “that 2.5 litre bag and everyone parading in, thinking it was a big deal.”

Dr. Rager updated Jeff’s medicine list and we discovered we did not do the last two weeks of Jeff’s Tacrolimus taper!  Whoa!  How could we have done such a thing!  Each week when we load his medicine box, I pull out the list of medicines to make sure we get it right.  I guess after a time you think you know the routine so well and there hadn’t been too many changes for awhile except for the taper.  We skipped the every-other-day dosage, the last leg of the taper.  Jeff said he didn’t remember ever talking about every other day – and neither did I - but it was on one version of our instructions very clearly!  (We saw later that it was not on the version we were using to load the pill box.)  Not to worry, Dr. Rager said, since Jeff didn’t appear to be having any difficulties.  When Dr. Porter joined us later, he said his taper was a little fast, that it wasn’t uncommon for the taper to take a full year. 

Dr. Rager asked Jeff about his arm.  Jeff described trying to put on deodorant by grabbing a wall to stretch his arm out straight enough to expose his armpit.  I told her that PT Mike asked what his PT goal was and Jeff’s response, “I’d like to be able to tuck in my shirt.”  So when Dr. Rager asked Jeff to un-tuck his shirt so she could check his skin, she jokingly offered to help him tuck it back in, if necessary. 

I asked Dr. Rager if the results of the engraftment study, aka chimerism test, were known.  This was one of the tests that had been ordered at the time of Jeff’s last bone marrow biopsy in September.  The results weren’t back yet when we last visited in October and Dr. Porter didn’t know the reason for the delay.  Evidently, something happened to the sample so the test would be repeated with, thankfully, blood drawn today in the lab (no biopsy required!).  She also swabbed his cheek again in case the problem was that the lab didn’t have enough of Jeff’s cells to compare to the blood sample.  They are looking at how many of Jeff’s blood cells are his donor’s (hopefully 100%) and how many are his own.  This can take time to completely change over and they need donor DNA and Jeff’s own to compare.

We discussed Morrisville’s notice about a problem with TOCs (Total Organic Carbons) in our drinking water.  Dr. Rager said that although it isn’t good, she felt short-term exposure would not be harmful.  The notice from the water department said, “You do not need to use an alternative (i.e. bottled water) water supply.  However, if you have specific health concerns, consult your doctor.”

Dr. Rager and Dr. Porter consulted together about Jeff’s labs and complaints, etc. and then rejoined us in the exam room.  They decided that Jeff could have a flu shot since he is no longer on Tacrolimus.  The rest of his immunizations will be done at one year post-transplant.  Jeff should have a pulmonary function test in case his fatigue and occasional shortness of breath are due to lung damage from pre-transplant conditioning.  We need to watch for skin changes that would indicate a greater degree of GVHD and require intervention.  Dr. Rager suggested Benedryl at night to help the itching (an additional 1 pill).

Dr. Porter took a harder view of Morrisville’s drinking water issue which is expected to be resolved “within the 4^th quarter of 2011.”  He wouldn’t drink it himself!  We showed him the notice to ask whether Jeff should be drinking bottled water and came home wondering whether any of us should be!  Jeff, however, says, “Pooh!”  Hmmm.

Not all of Jeff’s labs were back yet so Dr. Rager asked me to call later in the day to see whether his magnesium was good.  If so, he could reduce his daily pill consumption by three.

We sat in the infusion waiting area so Jeff could get his flu shot.  For some reason they wanted to give it to him at HUP.  We saw a young woman who was masked and gloved playing Words With Friends on an iPad.  Jeff commented about the game and I confessed I am addicted.  Her father laughed and said he was playing her on his iPhone while sitting next to her.  When she went into the infusion area for treatment, we chatted with her father.  We learned she is a 24-year-old high school teacher from Lancaster County.  She started at Hershey Medical Center and they went to Johns Hopkins for consultation when she was diagnosed with AML.  However, he said, they don’t do stem cell transplants there so they came to HUP.  Her donor was a 25-year-old male.  Her father was so impressed by this, “What young person thinks about being a bone marrow donor?”  Jeff told him about the military providing extra leave time to soldiers who get on the registry and end up becoming donors.  The young woman must have had a so-called “mini-transplant” because she had her pre-transplant conditioning at HUP (something like half-strength of what Jeff received) and then went home!  Remarkable!  Her actual transplant, like Jeff’s, was like a blood transfusion but it was done at home!  Just incredible!  She seemed to be doing really well and we wished her the best.  As we went our separate ways she called, “Only 44 more days to go!” referring to her first 100 days with restrictions. 

When we got home, we called Dr. Rager to check on Jeff’s magnesium level.  I guess since we’d stopped the Tac two weeks early, his magnesium was high.  In any case, it is no longer necessary for Jeff to take oral magnesium (three fewer pills per day).  Dr. Rager said she hadn’t completed going over Jeff’s labs but his creatinine was high (1.5) so she might be calling back with further instructions.  I told her we’d push fluids in the meantime.  She said his WBC was 4.5 (in the normal range), his hemaglobin was 12 (below normal) and his platelets were good at 206,000. 

While we were out of the house for the evening, Dr. Rager called to report that they do want to see Jeff next week to repeat the liver function panel.  Jeff says, “All those years of NOT smoking and drinking is finally catching up to me.”

I often think of what Dr. Rager said to me in May when I asked her, “Why oncology?”  After pausing to collect herself, she said, “There is still so much work to do and cancer patients are special people who seem to rise to the occasion.”  Please pray for oncology doctors, nurses, researchers, the young woman we met at Dr. Porter's office and all other cancer patients as well as though who are experiencing cancer scares, waiting for results.