Stairway to Bed

Jeff and I discovered that three months is about as long as we can last between his oncology appointments without our anxiety becoming unbearable.  This was the longest he has gone without seeing Dr. Porter since BMT – and the assurance provided by the many blood tests they run each visit.  Jeff, who is usually Mr. Calm, was starting to express his concern.  His worry became my own.  This allowed for some good conversations about his priorities and our goals.

No, he had no major symptoms that caused our freak-out.  He’d had a dexascan to check his bone density and there was a 10% change on one of the measurements.  A couple of the measurements showed “Significant” change.  Jeff thought of our support group friend who has moth-eaten bones from Multiple Myeloma and, well, got to thinking too much.  I assured him that Dr. Porter would “pooh-pooh” the results of the bone density test and my niece, Nurse-to-be Becky, agreed it probably wouldn’t be a great issue.

As I reassured Jeff about his bones, I began worrying about the amount of sleep he needs.  He has been working more and comes home absolutely whipped.  After a day’s work, his voice is weak and he answers questions with Mmm’s and eh’s.  He often heads directly to bed, sometimes without showering first.  I couldn’t help wondering whether it was only the physical labor that exhausted him. 

Between his Mondays and Fridays with little Rosie, Jeff managed to complete a custom staircase job - which also involved wallpaper removal, replacing trim, installing hardwood flooring and painting.  This would not have been a big job for him pre-BMT.  This time he enlisted the help of a friend for a couple of days.  After it was finished, he admitted that he might have taken on a bigger job than he ought to do these days.  In addition to the physical demands of this job and an exterior painting job he also took on, there was a fair amount of worry about what it would take for him to finish.

Tuesday he saw Dr. Porter.  His blood counts were good, with Hemoglobin hitting a new peak, 14.7.  Nurse Heather and Dr. Porter both told him that his three-year survival bodes well.  They discussed his neuropathy and Jeff said he wasn’t sure the Neurontin does any good.  Dr. Porter said to experiment, then, and drop one pill.  The results of the liver function tests were not yet available so he could expect a phone call about those.  Jeff came home a little relieved and sheepish about our unnecessary hand-wringing.

On Thursday Nurse Heather called Jeff.  He sensed that Heather was reluctant to give him the news:  a recurrence of GVHD.  He has to go back on the immunosuppressant, Cellcept, because his liver function test results were elevated.  He’ll have to have those tests run again in three weeks.  At least GVHD can be managed. 

Oh, well.  Down one Neurontin, up four Cellcepts (the dreaded empty-stomach pills).  Net change:  +3 pills.