Is it sunburn? Is it clogged sweat glands? No, it’s GVHD!

Jeff has been having skin issues for about a month which warranted an extra trip to Dr. Porter’s office.  Dr. Allison Rager wanted to eyeball Jeff’s face which is a little rough right now.  However, Allison was going to be in class today and wasn’t going to be in the office at all.  She called before we left the house to tell Jeff that she would miss him.  Jeff said she sounded disappointed.  She confirmed that Jeff should have labs drawn today but he’d have to settle for Nurse Heather and Dr. Porter.

At the Perelman Center we had our beverage treats at Gia Pronto and then got in line for the elevator.  Jeff started to chuckle.  “Look up,” he said.  There was a man on his knees directly overhead.  He was washing the glass roof!  We have seen workers on that cantilevered roof before but never from the vantage point directly beneath them! Cool!

We checked in with reception at Dr. Porter’s office.  The receptionist always asks, “Are you having labs today?”  And the answer is always, “Yes.”  Today, Jeff said, “Yes, they just can’t get enough of me.” 

After labs were drawn and vitals checked (good bp, good weight), Heather examined Jeff’s face.  She said, “Wow!  That is classic chronic GVHD.”  She commented that it had been over a year since transplant and Jeff remarked, “Yes, I am one of the 80%.  Each year it will get worse…”  Still, Jeff kept Heather laughing throughout the examination.  She thanked him for the entertainment which she said she needed on a Friday.  Jeff showed off his brand new UV50 shirt and his new Aussie-style wide-brim hat which are meant to keep him from burning so easily.

Heather asked more questions about when the skin rash began (probably the day after Jeff’s last visit to the Perelman Center) and when it appears worse and does it itch (no).  It is a little tender like having pimples.  She suggested Jeff see the dermatologist again but let’s see what Dr. Porter says.  We told her it was our experience that Dr. Porter is never impressed with skin conditions.  She laughed and said this would be different because it was occurring during a steroid taper. 

It turns out that Dr. Porter agreed.  Jeff has GVHD.  They will set up an appointment with the dermatologist who, we are told, has “tricks” and a cream that may enable Jeff to continue the steroid taper.  The goal is still to get him off steroids. 

Dr. Porter said, “You have something I never want to see in my office.”  Jeff was horrified.  What can be worse than what has already transpired?  With some concern, he asked, “What?!”  Dr. Porter said, “A tan line.”  Dr. Porter assured Jeff he could go deep-sea fishing with the guys from church if he takes care to lotion and cover up.

He wants Jeff to keep his original appointment on July 3^rd for his “childhood” immunizations and a bone marrow biopsy.  Jeff was not thrilled to hear that.  Dr. Porter said that Allison would do the biopsy.  Jeff asked, “Has she done it before?”  Dr. Porter said, “No, but we’ll teach her the day before.”  Jeff said, “Yeah, on a dead pig.”   

Joanne wasn’t in the office today but I emailed her to see whether she has heard anything from Jeff’s donor.  Maybe soon.    

On the way home, Jeff wondered, for the umpteenth time, whether there would be a letter from Keith.  In Keith’s middle-of-the-night I-got-to-boot-camp-safely call, he said that he would write in 7-10 days.  It has only been 10 days.  However, when we got home, Jeff checked the mailbox eagerly.  There was no letter from Keith but there was a letter from Wichita, Kansas.  That was a puzzle.  Jeff turned it over and over and asked, “Who do we know in Kansas?”  I said, “Open it.”  It turns out that while en route to boot camp, Keith met a Marine family in line at the TGIF restaurant in the Atlanta airport.  They invited him to have dinner with them and told him he could order anything he wanted.  They had nice things to say about Keith, the Marines, and their son who is serving in Afghanistan.  It was a very nice letter, good enough to get us by until we hear from Keith ourselves. 

Robin Roberts

This week we had many phone calls and emails asking whether we had heard that Good Morning America’s Robin Roberts, a breast cancer survivor, now has MDS.  When Jeff and I first heard the news, we wondered whether her announcement would encourage minorities to register with the National Marrow Donor Program.  We knew there was a great need for minorities on the registry.

When we heard that Robin’s sister was a match we hoped she would still put out a request for people, particularly minorities, to register.  And she did!  A friend at work told me she’d heard that the NMDP website was overwhelmed with requests for swab kits!  She sheepishly admitted that she still has not registered although I told her of the need for minority donors.  (Get busy, girl!)

When Jeff was diagnosed, he was told there would be no problem for a man of European descent to find a match.  Those words made our hearts sink for those who would not hear the same message.  Ethnicity matters in finding a match.  Sex and blood type do not.  Thus, Jeff’s XX blood and marrow. 

Jeff quipped that since Robin Roberts’ secondary cancer is MDS, maybe his would be breast cancer.  Oh, please…

First Bike Ride

Jeff spent some time this afternoon sprucing up our bikes.  We couldn’t go for a ride until evening because Jeff has been having skin issues, probably from his meds that cause him to burn easily.  In the meantime, we went shopping for lightweight long-sleeve shirts and another floppy hat which, hopefully, will help.  When it was nearly dinnertime, I suggested we go home from our shopping trip by way of Shady Brook farm.  I reasoned that ice cream might spoil our dinner but who would know?  With Keith off to Marine boot camp at Parris Island, we are genuine empty-nesters completely, free of the necessity to set a good example for our children.  Jeff remembered that Shady Brook Farm never makes Rum Raisin and he proposed Goodnoe’s instead.  Good idea!  Goodnoe’s did not disappoint.

By the time we got home, the sun was no longer harsh and we set out on Jeff’s first bike ride since his BMT (and mine, too).  His goal was to ride the canal until we reached Black Rock Road in Yardley.  We had been seeing and smelling smoke at home and it continued along the canal but since we did not hear fire trucks, we assumed it was wafting over the river from New Jersey.  I kept thinking it probably wasn’t good air for exercising but the smell wasn’t very strong.  We pedaled on.  We made it to Black Rock Road and then Jeff espied customers walking the canal on the other side of Black Rock Road.  We waved.  I told Jeff, “They won’t recognize you, on a bike, with a helmet, looking different than you did the last time they saw you.”  We pedaled over and chatted.  They said they had just mentioned Jeff that morning, wondering if he was ready to work.  They told him, “Whenever you’re ready.”      

We rode home and enjoyed hot dog salad.  If we had ice cream for dinner, does that mean our hot dog salad was dessert?  Here is the recipe:  pile a plate with lettuce (we used red leaf lettuce from Kerry and Theresa’s CSA), then a scoop of potato salad (ours had balsamic vinaigrette dressing), and top with a sliced hot dog (leftover from the picnic Jeff cooked for my parents).  If they gave prizes for empty-nesting, we’d be contenders for first place!

Sadly, a childhood friend of Kerry’s died suddenly, tragically last week.  Kerry, Jeff and I attended the memorial service.  During calling hours, we spoke with Debbie A., another cancer survivor from town who expressed her feeling that dealing with cancer is not so bad compared to the very sad loss of a child.  Jeff agreed. 

The sad occasion nevertheless gave us an opportunity to see people whom we had not seen for a long time.  An older couple from town, and former customers of Jeff’s, sat three pews behind us.  When we were leaving the chapel, Jane shook Jeff’s hand and said, “When I first arrived, I thought you looked really, really good and then you walked into the room!”  It was Kerry she had first seen and thought he was a recovered Jeff.  Lookin’ good indeed!  She never did say whether she thought Jeff was looking well.