Frigid Cold, Dusty Gray

It was 16 degrees on Friday and felt like 1.  Jeff knows it.  His train home was 10 minutes, 20, 30, 40 minutes late according to the periodic updates on the arrivals/departures monitor.  Once he boarded the blessedly warm train, there were issues with power and the trip was stop-and-go.  I doubt he will take the train in bitter cold weather again.  His next appointment at the Perelman Center isn’t until April 1^st so, unless Mother Nature plays a nasty April Fool’s joke, he won’t freeze. 

Jeff saw Nurse Jackie, the transplant nurse at Dr. Porter’s office.  She hadn’t seen him in quite a long time and was glad to see him looking so well.  She reviewed last week’s breathing test and reported excellent results – one of the measurements was 98%, up from 60% pre-transplant.  His Hemoglobin was 14.7, a new high since transplant.  She gave him a new instruction from Dr. Porter: continue the Cellcept taper, drop one more pill!  That means only one night-time dose and we will once again be able to eat weekday breakfasts together!  It has seemed like such a nuisance for Jeff to take his empty-stomach pills as soon as he wakes up.  We’d have tea in bed together, then he’d eat breakfast after I’d left for work.  This has been our habit for so long that I wonder how quickly Jeff will adjust.      

Jackie likes to scold her patients.  Patients like Jeff enjoy getting her going.  He asked her whether any of his medications could be causing joint pain – shoulders, wrists and ankles (he failed to mention jaw pain).  She said, “That’s classic GVHD!  Do you do any stretches?” 

“Oh, no,” Jeff replied with the conviction of a couch potato. 

“You have to stretch!”  Jackie insisted.

“Amy and I mall-walk in cold weather.  It doesn’t hurt while I’m walking but the next couple of days my legs and feet hurt terrible.” 

“But you stretch before and after you walk, right?” Jackie asks.  Surely she could have guessed his answer.

“No.”

Jackie shook her head.  If only her patients were more diligent in following her instructions!  She called in the Physical Therapist who gave him some exercises.

The lab orders for Jeff required four vials of blood, a big lab day.  In addition to the several routine panels, another engraftment analysis was ordered.  We usually don’t get those results until his next doctor visit.  They have caused me some anxiety in the past but this time I was not overly concerned.  

Jeff told me about a new patient he saw in the waiting room.  The woman looked ill and was accompanied by a young relative wearing blue University of Pennsylvania scrubs, a nurse.  The younger woman was telling the older woman what she could expect in the lab department.  The lab door opened and “Mary!” was called.  The phlebotomist asked Mary, “How are you today?”  Jeff thought that was a question that didn’t require an answer.  Anyone could see the answer was “lousy” so he answered for her, “That’s the million dollar question.”

In other news, Jeff’s New Year’s resolutions included prioritizing some of our home improvement projects.  You might remember that during Jeff’s early recovery he took a permanent marker to the ceramic tiles on the bathroom floor to mark those that he thought he’d replace when he was up to it.  Months later I removed those X’s with toothpaste and elbow grease to avoid the questions we invariably got from guests.  When he asked me to go tile-shopping last week, I asked whether he was really ready to tackle the project which now has evolved into a near gut-job.  He assured me he was going to start it right away so off we went. 

We bought tile.  I didn’t want anything to hold up the project so immediately upon returning from the tile store, I emptied the bathroom linen closet, medicine cabinet, vanity, took pictures off the wall and even removed the toilet paper.  I figured that was a good way to say, “Construction Zone Here.”  Jeff began the demolition and turned a worrisome gray that was only partially due to the construction dust.  Tile removal wilted him.  Now I find myself worrying just a teeny bit that the project could be stalled if he doesn’t feel well.  Over breakfast this morning, I confessed to Jeff that I was relieved by this week’s excellent blood counts - on more than one level.

55 And Still Alive!

When I wished Jeff a Happy Birthday this morning he puffed out his chest and announced, “I’m 55 and still alive!”
 

Single-digit temperatures are not conducive to outdoor walks so we went mall-walking this morning.  Jeff is concerned about his lung function test later this month because he has been getting winded fairly easily.  He wanted to make sure he fit in a “work-out” this weekend.  The lung function test is done periodically to check for damage from the pre-transplant conditioning.  So far he has had good results.

We’d been discussing the empty anchor store at the mall.  Jeff was quiet for a couple of minutes and then said, “I wonder what’s next.”

“You mean, which store will occupy that space?” I asked.

“No.  What I’ll do to help Gift of Life.”

Jeff wondered aloud what he might expect next medically and, well, eventfully.  Jeff’s birthday, the New Year and his January appointment at Dr. Porter’s office have us thinking about his survival.  Right now, we decided, it seems as if he is cured - even though “there is no cure.”  It feels like “cured,” not “in remission.”  We don’t delude ourselves that things couldn’t get ugly again but we are in a pleasant place, enjoying now. 

We tossed around some ideas for a swabbing event.  Where do lots of people congregate, especially young people, who would be inclined to swab?  The Grange Fair?  A Rider event?  We can talk to Gift of Life for advice. 

We mused about the future and reflected on the past year.  It was a big year for us.  We learned the identity of Jeff’s donor in April, we became grandparents in May, Keith left for Afghanistan and Jeff started babysitting Rosie in July, we took a bucket-list trip to Bermuda in September, met Jeff’s donor in October, celebrated 34 years of marriage in November and went to Boca Raton, FL, in December at the invitation of Gift of Life.  Also in December was the third family wedding since Jeff’s transplant.  It was a very happy occasion both for the young couple and for us.  Jeff gave me much more than the one slow dance he would reluctantly grant me pre-transplant.  We danced slow, we danced fast, we danced and danced!

Kim cooked for her Dad’s birthday – a beautiful flank steak stuffed with roasted peppers, spinach and bleu cheese with beets and potatoes and, naturally, rum raisin ice cream.  We played a rousing game of Qwirkle, played with the cats and headed home.  A good day.