Disappointed and Deliberately Vague

 Jeff belted out “There Ain’t Nothing Like a Dame” as we traveled I95 on the way to his hematology oncology appointment at Penn.  I’d put the South Pacific CD in the car for this trip, thinking he’d enjoy listening to songs from his favorite musical.  He dropped his voice for “There is… absolutely… nothing… like the frame… of a dame.”  I wish I had taken a video of the performance!  We both sang and laughed at the silly lyrics – a perfect diversion for what may have been an anxious 45-minute ride.  Less COVID risk in our own car than on public transportation.  Plus, we would not have been singing “I’m as Corny as Kansas in August” on the train.

It was my first look at the Perlman Center in a few years and it looked the same to me.  However, just as my sister warned us, the elevators could hold only four people at a time, and those were not, technically, sufficiently socially-distanced.  Still, it was undoubtably safer than the normal sardine-style capacity.  We reached the West Wing, 4^th Floor where Jeff had labs drawn – three vials – then sat and waited.  Vitals taken, then sat and waited.  Once in the exam room we expected to see Nurse Heather first.  It was usual for her to ask Jeff questions, take notes, then update Dr. Porter who would come in later.  However, it was Dr. Porter who came in!  Jeff told him it was nice to see him and asked, “Are you disappointed?”

“Very disappointed,” Dr. Porter replied. 

Dr. Porter’s appearance threw us a little and we forgot to call Daughter Kim until several minutes in.  I had her phone number ready to dial, though, and quickly called.  Dr. Porter backed up a bit to bring her up to speed.  We could hear Kim typing, taking helpful notes. 

“It’s never good when leukemia relapses after this many years but there are options that would not be available to patients who relapse after only two years,” Dr. Porter explained.  It is rare for a patient to survive this long – 9.5 years post BMT – and then relapse.  He said he was going to be “deliberately vague” because we just don’t have all the information he needs yet.  He ordered more blood work – three more vials were drawn before we left the office – and a bone marrow biopsy set for tomorrow.  Jeff will have to go alone for the biopsy, no companion pass this time.  Today’s blood work shows Jeff’s blasts are at 15% (not as terrible as when first diagnosed in 2010), his platelets dropped another 20,000 (“not yet dangerously low”) and his hemoglobin dropped a little, to 11.8.

Some options discussed tentatively, pending test results which may identify the source of the MDS/leukemia, include:

• 1.     Vidaza as before with the goal of lowering the blasts.  Maybe via infusion instead of those tummy-burning injections – slower to infuse but maybe less painful. There is a drug that was not available in 2010 which is given with Vidaza to make it work better but has more side effects.  (Vidaza was not particularly successful the last time around so a drug to boost its efficacy seems like a pretty good idea.)
• 2.     DLI – Donor Lymphocyte Infusion.  Donor Nicole’s cells may have reacted against cancer cells so injections of her lymphocytes could help.  Nicole has already graciously and amazingly offered whatever is needed. 
• 3.     Another transplant.  Although Dr. Porter told us 10 years ago that you don’t go into bone marrow transplantation expecting to do it again, he says it is “on the table”.    

Dr. Porter concluded that Jeff is medically fine right now, it isn’t a life-threatening emergency.  To Jeff’s question, “Should I be working?”:  he expects Jeff will have enough going on in the coming weeks and, with anemia and low platelets, it would not be good if he was hurt on the job.  He suggests slowing down.

As we left the office, Jeff kept asking me if I was disappointed.  I wondered, about what?  That we still don’t know what the treatment will be?  That he is sick again?  I gave what I hoped were reassuring answers but he asked again in the car on the way home.  Realizing he was probably trying to express his own disappointment I asked, “What are you most disappointed about?”

He sighed, “All the doctor visits I’m going to have.”

Really?  I can’t imagine facing Vidaza again or the prep for and recovery from bone marrow transplant.  He is focused on the next steps, those pesky tests and doctor visits.  And maybe that is as it should be.  I am amazed at how brave he is.  Disappointed, yes, but brave and willing to do it all again!