Day 116 – Im-patient Patient

Last night Jeff said, “You realize that tomorrow we might not learn anything remarkable.”  I agreed, “It will be just another day.”  We had managed to have fun on the weekend without thinking too much about biopsy results.  In fact, I think we are both in a state of acceptance most of the time.

Dr. Lee called last night to postpone Jeff’s final exercise study evaluation.  He has strep throat which, in his line of work, keeps him out of work for a few days.  Oh well, we’ll catch him another time.  Unfortunately, it might mean a special trip to the city. 

Dr. Porter’s office was busy this morning.  Jeff was becoming anxious as more and more patients who arrived after us were called in.  Several doctors share the office; it was unlikely they were Dr. Porter’s patients who were getting in ahead of us.  While we sat waiting, the line at the desk grew unusually long.  A woman called from the desk, “Is anyone here checking out?”  Jeff muttered under his breath, “I hope not!”  He chuckled and commented that perhaps that was a bad choice of words to use in an oncology office.  Finally, Jeff’s name was called.

Jeff stopped in the first screening room for a weight check and vitals.  He gained a pound and his blood pressure was pretty decent.  So far, so good.  Then we sat in an exam room to wait some more.

Nurse Heather came in to discuss Jeff’s skin problems, his meds and some of his test results.  She said his blood counts are good.  “And,” she said, “you have nice hair.”  She swabbed his cheek for DNA because the lab had run out of Jeff’s DNA (more on that later).  She said the biopsy showed clear marrow – no leukemia.  Some of the tests were not completed yet – the engraftment analysis and the chromosome test. The engraftment level will show how much of Jeff’s marrow is the donor’s and the chromosome test looks at the chromosomes which were affected by Jeff’s MDS.

Heather said priority is given to the lab tests for in-patients which may explain the delay in getting Jeff’s results.  Jeff said, “Well, we’re ‘im-patient!’”  Heather got the joke and added, “Actually, you’ve been very patient.”  I asked whether Hemoglobin counts in the 11s are good.  She said those are good counts for where Jeff is now - post-transplant -which is not normal, she reminded us.  She said that often, when patients are taken off Tacrolimus, the bone marrow will “flourish.”  

The biggest news is that Heather suggested working on getting Jeff off of IV fluids.  She ordered new IV bags with half the magnesium and half the fluid so that infusion will take only one hour, not two.  Jeff said, “YES!”  I thought he was pretty close to leaping out of his chair to hug Heather.  Jeff has been complaining that the infusion every morning – and the two-hour nap that inevitably accompanies it – takes such a chunk out of his day that he never feels like he can start a project or do much of anything.  Jeff will take an additional magnesium pill every day - three in all - to replace the IV mag.  Heather outlined a plan that could have Jeff off the IV fluids in two weeks and the Hickman catheter pulled out in about a month.  Jeff was both glad to hear it and disappointed it couldn’t happen any sooner.

Heather left the room to consult with Dr. Porter.  Several minutes later, Dr. Porter and an intern came in.  Dr. Porter congratulated Jeff on good results from the biopsy.  He said, “Consider this remission.  A cure is a few years away.  There is still a lot of work to do but this is a really important milestone.”  He discussed the Tacrolimus taper which, by his schedule, would finish by the end of November.  Jeff liked that better than Jackie’s schedule which would have ended in early December.  Still, Jeff remembered, we’ll have to watch for evidence of GVHD which could slow the taper.  Dr. Porter doesn’t need to see Jeff for another month.  He will call us only if the engraftment or chromosome tests indicate that Jeff needs to do something.  He didn’t expect that to be the case.

 

I asked why Heather needed to gather DNA from Jeff’s cheek.  Dr. Porter said they needed to be able to compare the donor’s DNA which is found in Jeff’s blood and Jeff’s DNA which is found everywhere else.  Jeff was blown away by this.  I think we’ll need to find the CSI episode about the bone marrow recipient who committed a crime and left donor DNA (blood) at the scene.  That might help.

We picked up Kim for a late lunch and a late afternoon visit with my parents to share the news.  Judy was there, too, so the grapevine is sure to precede the blog in spreading news to my sibs.  When we got home, I hooked Jeff up to his IV and let him alone to sleep while Kim and I ran errands.  When the IV finished, Jeff spoke with Kerry by phone.  While the news is good, it doesn’t seem like kick-up-your-heels news.  Or are we just too tentative to embrace it?  I wonder…