Last post, I was up in the air. My Free Lambda was turning worse, but I was
feeling well. So things were
indeterminate. No longer. The Free Lambda has gone into record
territory. Here is the Free Lambda graph
through February 11, when a treatment decision had to be made:
Dr. Nahas directed a three-part treatment regimen: weekly
infusions of Daramatumumab, daily Pomalyst pills, and supplements of
Dexamethasome, a steroid. These all
started Friday, 2/8, and all seemed well.
Other than the after effects of a pretty bad cold, I was still feeling
well, but the numbers were a real source of worry. Dr. Nahas said if the numbers continued their
upward trajectory, they would use apherisis to filter the bad guys out of my
bloodstream, before they clogged up my kidneys.
This would be a band aid approach, as it is a response to an emergency
situation, a way of preserving kidney function temporarily; obviously they would
have to find a way of controlling the bad guys to avoid dialysis.
Well, before I could come in for my second weekly Dara
infusion, I began to feel as if I was reacting to something. A very itchy back, muscle cramping at the
least provocation, shortness of breath, and a pain on the exterior of my left
chest. These symptoms started on Tuesday
and became real on Wednesday. I reported
them to the BI staff on Thursday. They
called me back, and told me to check into the Emergency Room. I suggested that I would get some things done
that morning and drive myself in early that afternoon. No, I was not to drive, and I was to come in
right away. They were concerned that I
might have a cascading reaction that could be life threatening. So I packed for a couple of days, and we
arrived at the Emergency Room at noon.
The Emergency Room is basically slow motion chaos. I wonder if they would have prioritized
things so that they might have dealt more quickly with me if I really did have
a crisis situation. In fact, it took a
long time to check in, then they took vitals and blood tests pretty
quickly. But then another hour + passed
before I was led back to a bed. Then it
was more waiting. Eventually they took
an X-ray of my chest and put in an IV for administering fluids. That was going to be in anticipation of a PET
scan, but that never happened. Finally I
was transported to Feldberg 7, the hematology / oncology ward where all the
nurses know me. I arrived at 11:55 PM,
but with check-in and various visits, it was 1:20 AM before I was actually able
to get to sleep. Then of course, they
wake you at 4 AM for vitals and taking more blood. Lots of incentives NOT to report anything out
of the ordinary to the medical staff.
By this time I felt I had done the right thing, in spite of
the travail of the Emergency Room.
Friday was the day I was scheduled for my second infusion of Dara. They held off, pending another series of
tests. I had a lung scan to determine if
the pain in my left chest was a pulmonary embolism. They took yet more blood. Bottles, not vials. One wonders if the medical profession has never
gotten over the idea of bleeding patients to relieve them of bad humors. By this time the shortness of breath was
gone, but Thursday/Friday night my left chest hurt more while just breathing in
bed. The medical team came by on rounds
late in the morning, and they explained what the various tests were designed to
tell them, but they had no answers at that time.
I had a late lunch, and then Barbie came in for the
afternoon. She brought underwear and
supplies for the weekend, as at that time we just assumed I was a prisoner for
the weekend (a 3-day weekend). She
planned to drive up to Vermont on her own Friday night, after the holiday
weekend traffic had thinned out. After all,
I had heard nothing from the medical team, which to me meant no decision. I actually sought out the doctor who had led
the rounds that morning, and he had good news about the latest Free Lambda
tests. He didn’t say anything else, but
maybe my asking about the results from the tests sparked something. At any rate, Barbie & I were walking past
the nurses’ station on the way out when Bridget, the supervising nurse said,
“Oh, I hear you are leaving us!”
What?? We had heard nothing.
If the news had come 5 minutes later, Barbie would have been on the
road, probably stuck in traffic, and not very eager to turn around and come
back to the hospital. Apparently the
tests ruled out an embolism, and the results of the Free Lambda tests were very
positive. Here is the graph of my Free
Lambda through Friday:
That is a pretty steep decline. The value is still higher than when I was
first diagnosed in 2012, when my body was falling apart. But definitely going dramatically in the
right direction. That plus my overall
vital signs were positive, and I had told various doctors that I wanted to make
a special event in Vermont: a joint birthday party for 3 grandchildren, where
they would be joined by the other 3 grandkids.
So our entire family would be together.
Apparently it is not uncommon for people to have a reaction to the
Daratumumab, and perhaps my symptoms corresponded to that reaction. Actually, I never spoke with any medical
staff, so that is just a surmise on my part.
But I did not hesitate to get out of there as fast as possible. I am to call in on Tuesday and arrange when
the Dara infusions will resume.
Meanwhile, I am a free man.
In fact, I am writing this blog in the lodge at Pico Peak,
where Barbie and Andrew’s family are skiing.
Skiing is one of those athletic things that I am resigned never to do
again. And sitting here in the lodge
observing all the travail of putting on all that gear, and then seeing people
come in freezing cold, I wonder if it is worth it. But clearly the kids enjoy it, and Barbie
likes to bond with the kids as they are learning to ski. She used to give Tyler (who is now going to
be 9) a day of skiing together, but now Tyler wants to ski faster than Barbie
does, so he entertains himself skiing backwards and twirling around, while she
comfortably winds down the slopes. In
the afternoon, Barbie shifted companions, skiing with Emma, who also looks like
she has a great time.
Needless to say, this has been an emotional roller-coaster
for Barbie. She felt guilty dropping me
off at the Emergency Room and then taking off so that she could teach piano lessons
Thursday afternoon. But Friday morning
she had follow-up appointment for some previous dental surgery, but she felt
guilty not being in the hospital keeping me company. I told her how it was hurry-up and wait as
the various tests would take me away for a while, and then leave me in the room
for an extended period of time before the next event. At any rate, she came in mid-afternoon
Friday, assuming she would come to Vermont and leave me for the long weekend at
BI. And she was feeling guilty about deciding
to do that. I told her not to worry
about it, but that had zero effect. So
the unexpected release was all the more euphoric, as our expectations were so
much the opposite. Even this late in
life, our expectations are not always accurate, and there is ample room for
surprise.
In spite of the very positive turn of events for my Free
Lambda, the level is still concerning.
Measured on the scale that was in effect in 2012, when I was diagnosed,
the latest number is 1407. The
equivalent number in June, 2012, was 1329.
But clearly something has Free Lambda going in the right direction. Is that simply the new medicines I am on, or
is it the result of those medicines waking up the dormant CAR-T cells that seem
to have gone on strike since November?
If the treatment that curbs the underlying Multiple Myeloma results in
an allergic reaction, I’ll take the reaction in order to control the
Myeloma.
The combined Vermont birthday party was a great
success. Andrew concocted a cake with
different symbols for each of the kids. Steve
from Minecraft for Tyler, a horse for Emma, and a Leo for Gabriel, a character
from his favorite video game, Leo’s Fortune. All these attacking a group of zombies. It was especially gratifying to
see the Jamaica Plain and Vermont cousins playing together Sunday
afternoon. The energy level was
incredible! Whoever came up with the
idea of replacing old, worn-out, malfunctioning beings such as us old farts
with young, energetic, new editions was a genius.
