Day 341 – Three Z’s and Familiar Faces

This rainy morning neither Jeff nor I was anxious to get out of bed.  Jeff woke up with a phlegmy cough.  He sat up to take his early-morning, empty-stomach pills and asked me if I would make him a cup of tea with honey.  I wasn’t quite ready to be fully awake but his request and that cough worried me a little bit.  I brought the tea and we lounged awhile longer.  I didn’t have to get up quite as early as usual since we were heading to Philly to see Dr. Porter.

As we waited for the train in Yardley, Jeff noticed Brian, a man he knew from Train Club.  In fact, a few months ago we had discovered that I knew his wife; we both work at Rider University.  Jeff greeted Brian and his son as we boarded the train and then we lost track of them. 

The train ride was difficult for Jeff.  His stomach was upset and he was very tired.  When we arrived at University City and began walking towards the Perelman Center, we noticed Brian and his son about half a block ahead of us.  We wondered where they were headed - one of the hospitals, most likely.  I walked briskly along until Jeff said he couldn’t keep up.  He was really dragging his feet this morning!  I felt bad for him and matched my pace to his.

As we approached the front of the Perelman Center, there were Brian and his son again!  Well, one of them, it would seem, is a cancer patient.  Our hearts sank a little at the realization even as we entered the building that inspires hope.  By the time we went through the revolving door, the two men had disappeared into an elevator. 

Upstairs in the Hematology-Oncology waiting area, Jeff put on a mask in case his cough was contagious.  He said the smell of it brought back the memory of last summer when he couldn’t leave the house without mask and gloves.  Joanne, the nurse who coordinates donors and recipients, met us in the waiting area with the contact release form for the National Marrow Donor Program.  This starts the process that will, hopefully, result in meeting his donor someday.  Joanne is 90% sure that the donor’s center will allow contact one year after transplant but some centers, she said, have a two-year waiting period!  She explained the risks of releasing contact information:  you are no longer anonymous, you might find that you don’t have much in common with your donor, the NMDP cannot stop unwanted phone calls or letters or unwanted media attention.  Nevertheless, Joanne said that she never had a patient who was sorry to have known his donor. 

Dr. Allison Rager Sehgal (we finally got the correct spelling of her married name) took Jeff’s update.  Jeff had a low-grade fever and, although Allison was not concerned about it, she suggested watching it for awhile.  I told her I was concerned about Jeff’s foot-dragging fatigue and we gave her a litany of annoying side effects of the steroids and Mycophenolate (CellCept, the immunosuppressant).  She confirmed that most of his symptoms are, in fact, side effects of the drugs.  She recommended seeing an eye doctor for his blurry vision.  It seemed as if her fixes for everything were things that began with Z: Zofran for the nausea, Zantac for upset stomach, Zyrtec in case his cough is due to allergies.  Jeff figures that he should be “almost done” since he has taken medications from Ativan and Ambien to Zofran and Zantac. 

Dr. Porter joined us and was impressed with Jeff’s report that he’d installed 1,000 square feet of hardwood flooring at Kerry and Theresa’s house.  I described how he hoisted himself up from the floor using a piece of flooring and Jeff bragged about how many, many times he’d had to get up and down off the floor.  Dr. Porter said it didn’t matter how difficult it had been, it was good that he did it. 

Jeff asked Dr. Porter whether he could work.  Dr. Porter said it would depend on how Jeff feels.  The fatigue and weak legs will take a long time to improve.  He guessed the bruising will be more of a problem than the bleeding.  Jeff also asked whether he’d have to be on steroids or CellCept forever.  Dr. Porter hopes not and said it is too soon to predict whether he’ll have chronic issues with GVHD.  Dr. Allison had suggested speeding up his steroid taper but Dr. Porter said he would be uncomfortable trying to rush things because of the problem Jeff had the last time he got down to 20 mg a day. 

We left the office with tentative plans for a very slow steroid taper, pending lab results on Jeff’s liver function which will probably be available tomorrow.  Dr. Porter will see Jeff again in early July.

We walked to the Potbelly for lunch, taking a shortcut to save Jeff’s legs.  As we sat eating our lunch, Jeff said, “There’s Charlene!”  Sure enough, there was his cousin Kathy’s partner, Charlene!  This is a day for seeing people we know, I guess.  We both shouted, “Charlene!”  She and her sister snaked through the line near our table and we learned that her sister has Myeloma, I think it was, and is expecting to have a PBSC (Peripheral Blood Stem Cell) transplant at some point.  Her sister wore the tell-tale signs of recent chemotherapy treatment, a head scarf and hollow eyes, yet she looked beautiful.  There is something about the way cancer patients seem to have signs of their endurance written on their faces while undergoing the most brutal of treatments.

On the way to the train station, Jeff seemed buoyed by his lunch and the reassurances of his doctors.  He joked, as I lagged a few paces behind him, “What’s the matter?  Having trouble keeping up?”

Jeff’s exhaustion began to hit him again while we waited for the train.  Once we were on the train, I asked him if he was going to sleep.  He shook his head vehemently and insisted, “No!” like an exhausted child.  He always does this before he falls asleep sitting in a chair.  Within a few minutes he was dozing.  We had planned to stop at the drug store for his meds (including the three Z’s) on the way home but he decided we’d better head home so he could continue getting his Z’s – sleep, that is.  He wished we could have taken a sleeper car for the hour-long trip home.  Poor guy. 

Today is a good day to pray for all cancer patients and those who care for them.  Pray for Charlene’s sister and Brian C. and Debbie A. and Pat O. and Melanie B. and Bob Y. and Jeff and…