Day 224 – Roller Coaster

Jeff celebrated his “old birthday” this week, a birthday which he shares with my mother.  He shares his “new birthday” with our daughter.  Although Nurse Heather had told him not to eat sugar, I did make a nice chocolate cake which we shared with Kerry, Theresa and Keith.  I froze a couple of pieces for Jeff to enjoy later, if his glucose is good. 

We went out to dinner twice this week, once with Kerry and Theresa and last night with our friends Annie and Pete.  At the end of each evening, Jeff asked me how dinner was.  He wasn’t asking in the usual way, “Did you enjoy your meal?”  Instead, he wanted to know whether he should have enjoyed his meal.  His taste buds are not working very well.

We all have probably heard the cancer journey as being an “emotional roller coaster” and today provided some ups and downs.  This morning, enroute to the Perelman Center by train, Jeff was as near to depressed as I have ever seen him.  He has not been feeling well, has very little energy and frequently has a weak voice, too.  After we rushed to cross the street between the train station and the Perelman Center, he admitted that he almost didn’t make it across the street because his legs felt like lead.  He was so forlorn by the time we got in the building that he had difficulty deciding whether we should have our customary drink at Gia Pronto before heading upstairs to Dr. Porter’s office.  He said coffee has been upsetting his stomach.  I suggested tea.   He did not enjoy it. 

While sitting in the waiting room at Dr. Porter’s office, Jeff looked up and saw Daniel, the Irish Dude from his days of Vidazza treatments at Aria!  Jeff jumped up to greet Daniel and learned that Daniel had a bone marrow transplant exactly one month before Jeff’s.  Daniel had been hospitalized for Graft vs. Host Disease twice since his transplant; his intestines are being attacked.  It is very common for BMT patients to end up back in the hospital at some point and Daniel’s experience punctuated our fears that Jeff’s GVHD is not being managed well.

Jeff was called back to the lab for the usual blood tests.  And once again they swabbed his cheek for the Engraftment Analysis!  Jeff guessed it was the fifth time they collected his DNA and still we had never gotten the results!  The test compares the DNA from his mouth to the DNA in his blood which, hopefully, is 100% donor DNA.

It wasn’t long before Jeff was called to an exam room.  Dr. Allison said she would check Jeff’s labs for his electrolyte levels.  They might be low following the stomach virus we had last week, one possible explanation for his low energy level.  Allison said Dr. Porter had gotten the dreaded stomach virus, too, and many of their patients were reporting vomiting (as we had) as well as diarrhea (which we, thankfully, did not have). 

Allison said Jeff’s blood counts were all good, even his hemoglobin was normal at 14.5!  She said his numbers were all “in the red” which evidently has a different meaning in hematology than in the business world.  She called the lab to inquire about Jeff’s Engraftment Analysis and found out that his September test had been completed at some point and that it showed his blood was 100% his donor’s DNA!  That is excellent news!  Now we need to make sure that the December result is the same.  That result is not yet available.

Dr. Allison went to discuss Jeff’s issues with Dr. Porter and then they both returned to the exam room.  We had reported Jeff’s leg cramps, locking finger joints, blurry vision and exhaustion paired with infuriating insomnia.  Dr. Porter said all of those symptoms are side effects of the steroids.  He noted Jeff’s puffy face and Jeff conceded that I often tell him his face is puffy but he didn’t believe me.  There were three people besides us in the room, all of whom nodded, “Yes, you have a puffy steroid face.”  Dr. Porter said this, and the other annoying side effects, may get worse before they get better, even though we are tapering the steroid.  He said, “This is the hard part.”

In the presence of his doctors, I asked Jeff whether he felt better, knowing his symptoms are attributable to the steroids.  He has been so distressed lately and I wanted to make sure we alleviated his concerns.  He said, “Well, I still feel crappy.”  I wasn’t sure we properly conveyed how Jeff’s activity level has decreased so I gave the example of Jeff’s reporting “lead legs” while running to cross the street.  Dr. Porter said, “Oh, yes!  That’s called muscular myopathy.  It affects the large muscles responsible for lifting and balance.”  That made sense.  We related how Jeff walked two miles to the grocery store but when we got home he had difficulty lifting his legs to go up three steps into the house.  Now I felt better; they really understood Jeff’s condition.  Still, I had a niggling feeling that the instructions they gave us would be changed later today when the rest of Jeff’s labs were run.

As we left the office, Jeff was moving a little slowly and looked wiped out.  He said he felt lousy.  However, he would not think of leaving the city without seeing Kim (how dare I suggest it?) so we met her near her work for lunch.  She’d been traveling on business earlier this week and it was fun to hear all about her trip.  Jeff was quiet but he did eat. 

The train ride home was difficult for him.  As soon as we were home, he crashed into bed and slept.  The phone rang and when I saw it was the University of Pennsylvania calling, I knew there was, in fact, still an issue with his liver.  It was Allison, reporting that his liver is “okay but not fabulous.”  I recognized the phrase as Dr. Porter’s; the senior doc must have advised the young ‘un how to relay the news.  She told me that his ALT, one of the liver measurements they routinely run for Jeff, should be in the 15-60 range.  When his GVHD was diagnosed, it was 349.  After one week of steroids it was 92. It is now back up to 140.  Instead of returning to the office in six weeks as they had previously requested, they want to repeat the labs in two weeks and see him in four weeks.  We are to keep the next dosage of steroid steady until they see him.

Down, up, down, up, down!  What a ride.