Question 1: In a quiet voice I asked Jeff, “Why do you think you tolerated the second cycle so much better than the first?”
Like me, he did not want to jinx it. He whispered, “I don’t know. I was wondering that, too.”
During the first cycle we borrowed a shower stool and a
wheelchair when things were bad. They
gave umbrella-like comfort – better to have it and not need it than need it and
not have it.
Question 2: “Does
Jeff need Cycles 3 and 4? Or are the
blasts in his marrow below 5%?”
Thanksgiving Week - Monday
Oncology Nurse Heather, always the cheerleader, addressed
Question 1 prior to performing the bone marrow biopsy. Jeff was with her in the office and they
called me - in the parking garage – to include me in the discussion. Heather thought maybe the Vidaza/Venetoclax
combo was working and lots of cancer cells were dying and clogging the
bloodstream, causing Jeff problems during the first cycle. Cycle 2, things settled out a bit. Heather was so encouraged by Jeff’s blood
work (red and white cells low but holding steady, platelet count still low but
rising) that she gushed her hope that the marrow would show improvement, too
Having a bone marrow biopsy on the Monday of Thanksgiving
week means the usual “results back in two or three days” might not apply. The wait was made much more bearable by
Heather’s encouragement and enthusiasm.
We waited without dread and only a little anxiety.
Labs drawn at this appointment did not indicate a blood
transfusion was needed. Jeff was
disappointed because he’d hoped to have a little zip to make for a productive
Tuesday in his shop.
Tuesday – Jeff worked in his shop on a walnut floor lamp he
sketched while in the hospital in October.
He turned the parts on the lathe a little bit at a time when he felt up
to it. (We’d bought the lathe when he
was diagnosed in 2010 to provide a less strenuous woodworking activity.)
Wednesday - Jeff’s labs were drawn at home, centrifuged,
and picked up by 1 p.m. but because of the holiday on Thursday we didn’t expect
to get results until Friday.
Thursday – We’d debated strictly heeding expert advice
about COVID safety at Thanksgiving gatherings, “People in your household only.” We decided to invite our children and
grandchildren, our quarantine circle, the only people we see outside of
doctors. As always, it was a mask-on
visit. Our children suggested a kids’
table for dinner. We put a tablecloth
and centerpiece on the kitchen table and assured Granddaughter Rosie that if
she said, “I’d like to say something,” we would hear her in the next room.
Friday - The blood counts were still not posted on Penn’s
portal in the morning but we needed to know whether a blood
transfusion was necessary before the weekend.
Eventually, Heather called to discuss his biopsy and the answer to
Question 2 (8% blasts – better but not good enough; yes, another two rounds of
chemo). She also wondered whether he ought
to have a transfusion. His hemoglobin wasn’t
yet low enough to warrant a transfusion but she calculated that if it continued
to drop at the current rate, he was going to feel pretty lousy by Monday. She scheduled a 2 p.m. appointment for a blood
draw and crossmatching and a 4:30 p.m. transfusion. (Matching donor blood is time-consuming
because Jeff has a history of antibodies in his blood.) We drove to the city.
When it was time for Jeff’s transfusion, he was directed to
a room with a bed instead of the usual recliner. He asked whether that was really his room. The nurses assured him it was. He took off his shoes and shirt (for access
to his PICC line) and climbed into bed.
They brought him a warm blanket.
He began to drift off to sleep, anticipating that he would be snuggled
in for an hour or more.
The nurse returned in a few minutes with bad news. No match.
“What?!” This was
the first time Jeff needed blood and couldn’t get it.
The trip was a bust except that we did get to see my sister,
Nancy, and her husband, Ken, for a short visit and a shared elevator ride to
parking level P3. Someday we will meet
somewhere besides the cancer center.
Over the weekend we wondered whether there would be a
problem getting blood on Monday. An appointment
was set for 10 a.m. Monday morning to stay within the 72-hour window for the
crossmatch that was done on Friday afternoon.
Unfortunately, the treatment appointment was for 4:30 in the
afternoon. We worried that Monday would
be a very long day if the treatment appointment could not be moved
forward.
On Monday morning we drove to the city without confirmation
that there was blood waiting for Jeff. We
made the trip record time. No slow-downs
on I-95, no accidents, very little traffic.
Plenty of parking at the Perelman Center. All good.
We had time for coffee/tea before I headed to the garage to work in the
car and Jeff went upstairs to Infusion.
The COVID surge has sent me back to my car in the garage of
the Perelman Center to avoid the public areas as much as possible while Jeff
has his appointments. We’d parked on P3,
the third level underground. I prefer
P2, especially if I am working, because P3 has the giant air handler for the
garage. It is very loud. If I have a Zoom meeting on P3 I have to stay
muted until I need to speak. My
coworkers told me it isn’t too bad but if I spend too much time down there it
drives me bonkers. Sometimes I move to P2
later in the day when it looks like spots are opening up. For Cycle 3, Day One, instead of a steady
LOUD, the air handler sounded like it was revving up for lift-off. I alerted Jeff by text that the whole
building might soon take off.
Heather called Jeff while he sat in the Infusion waiting
room. She suggested a new order of
events: blood draw, Vidaza infusion, red
blood transfusion. That makes
sense! Everyone involved was very
accommodating, the pharmacist who mixed his Vidaza, the infusion nurses, Nurse
Heather.
Jeff texted to let me know what was happening and to give
an estimate of the time it would take to finish. About half-way through he texted, “Did you go
to the pharmacy for my meds?”
Me: “No.
I’ll do that now.”
Jeff: “My window
looks out at the atrium over the pharmacy.”
… Me: “I’m there now. Can you wave?”
He went to the window and waved. Small joy.
I went to the pharmacy then back to the garage.
Treatment took about half an hour, blood transfusion took
an hour and half and when all was finished, a nurse said, “I’ll see you
tomorrow.”
He replied, “As a comedian might say, ‘I’ll be here all
week.’”
Everything went well and we were on our way before 2
p.m. The trip home was as uneventful as
the trip down. What we thought would be
a stressful, long day turned out to be a good day.
Family and friends responded to my FB post about blood
shortages around the holidays. We loved
seeing which of our family and friends were regular donors and thanked each of
them. We are grateful for all
blood donors. Find a drive here: https://www.redcross.org/give-blood.html
