100% Nicole, 100% Rosemary

Yesterday we went to Penn’s Perelman Center for Jeff’s two-year check-up.  Instead of taking the train, we drove because we planned to meet my sisters late in the afternoon to prepare for our garage sale to dispose of the last of my parents’ “treasures.”  We were driving down I-95 when Jeff started to chuckle.  He read the company name on a panel truck, “Colonial Electric.”  That is too funny!  He thought their logo should have been a kite and key. 

We had time for breakfast at Gia Pronto where Jeff’s coffee was too hot and my hot chocolate was a little cool.  Oh, well.  Then up to the second floor for Jeff’s labs and doctor visit.  The lab nurse called, “Lou.” 

Jeff said, “You called my last name?”

The nurse replied, “No first names here.  It would be a HIPAA violation.”

We thought that was odd, usually they call first names.  In fact, we noticed the nurses from the doctors’ offices and the receptionist area all called patients by their first names.  Someone is confused, we think.  These are the things that amuse us as we wait and wait and wait.  Today was particularly slow.  We were glad we had the iPad with us.  We’d brought it because we are good grandparents, ready to show pictures to anyone who asks and to those who don’t ask but look like they might if they know what’s good for them.  We watched the Rosemary photo “channel” - All Rosemary, All the Time – twice.    Then we read magazines we had downloaded.  Finally, Jeff was called to the exam rooms.  A stop at the nurses’ station revealed his excellent bp (110/70) and   excellent heart rate (58).

Dr. Allison Rager walked into the office with a “baby bump.”  We’d seen her in February but must not have noticed that she was expecting; the “bump” was probably hidden by her lab coat.  We asked her due date – May 31^st!  Of course, we showed her pictures of Rosemary and she oohed and aahed appropriately.  She told us that she was moving to Pittsburgh now that her two-year fellowship is over.  We will miss Allison.  She was the doc who monitored Jeff’s transplant and now she leaves him at his significant two-year mark. 

The visit was otherwise the same routine as usual: labs, visit with Allison and then both she and Dr. Porter.  We learned that the chimerism test that was done in February shows Jeff’s blood is still 100% Nicole’s.  That’s great!  And Jeff’s blood counts were good.

Jeff asked Allison about Nicole’s allergies to penicillin and sulfa drugs.  She explained that they don’t know enough about how much of the donor’s immune system transfers to the recipient and that is why Jeff takes a sulfa drug three times a week – the risk of infection outweighs the possibility that he would also be allergic to the drug.  It is also the reason for the childhood immunizations that were scheduled for this visit: DTaP (he needed this for taking care of Rosemary, too), MMR, Hib and Strep/Pneumonia. 

The liver function tests always come back late in the day after we’ve gone home so, as usual, Allison promised to call later with the results and instructions about Cellcept.  Dr. Porter assured Jeff that it was still possible to eventually wean off of the immunosuppressant although some people end up staying on Cellcept indefinitely.  He also reminded us that hitting the two-year anniversary from BMT is really significant. 

I admit to shedding a few tears when we said goodbye to Allison.

Back to the waiting room for more waiting and waiting for his appointment across the hall in the chemo area.  These appointments for immunizations confuse staff on the physician/lab side of the hallway because they are given in the treatment rooms.  Patients there are usually getting blood transfusions or chemo treatments.  One nurse said, “Immunizations?  Do we do that here?”

I noticed a woman scheduling her next appointment at the receptionist’s desk.  She had that beautiful look cancer patients get when they’ve been through hell and are recovering - a little peach fuzz on the head, a relaxed face, and eyes that seem to say, “Nothing can scare me now.”  When the oncologist’s office gives you an appointment, you just go.  It is unusual to say, “That date doesn’t work for me.”   But this woman was bold enough to say, “Well, I was going to have my hair done that day.”  Good sense of humor - an essential tool.  

Jeff noticed that people were being called ahead of him so we asked how much longer we might expect to wait.  Although he had an appointment, the order for the shots was not sent properly so he was only just now (at our prompting) put in the queue.  More waiting.

Finally, he was called to the treatment room, got his two subcutaneous shots and two in muscle tissue (the ouchy ones), and off we went.  We’d been there for five hours. 

Late in the afternoon Allison called with the results of the liver function tests.  They were only slightly better so no taper is possible at this time. More blood work next month to make sure there is continued improvement and avoid the need for steroids.

There was no time for the customary post-doctor-visit-nap until after the garage sale at my parents’ house on Saturday.  Jeff made up for it by taking a 3-hour nap after which he looked, well, not very much improved.  He had come down the stairs, heavy-footed, went right to the sofa and sat on the edge, rubbing his eyes, then propping up his head, elbows on knees.  Even dinner did not revive him much.  So I was surprised when I heard him stumbling up the stairs, struggling with something.  It was the vacuum hose.  I thought, “Oh, so we’re going to do some housecleaning.”  I grabbed a dust rag and we together we zipped the upstairs.  The activity helped. 

We were able to see our new granddaughter several times this week, changed diapers, talked to her, soothed some cries and delivered lots of kisses.  How lucky are we?