Non-medical announcement: our 6th grandchild,
Kevin Bartholomew Jones, was born to Brian and Bridget at 11:21PM on August 9th. Mother and child are doing well, but with 3
boys ages 4 and under, one can only speculate about the craziness that awaits
them! And the future food bills! It is a pleasure to hold Kevin; a wonder to
observe how perfect the fingernails, the eyelashes, the hair on his head, his
toes. Babies are such miracles! And not boring at all.
After the last post, things did settle down, and I have proceeded
to get better slowly. Occasionally I
overeat and spend the next 12 hours reacting to the overburden in my
stomach. But generally I have refrained
from overeating and the feeding tube has stabilized my weight. Barbie even arranged for me to have a massage
on Thursday morning, the day after Kevin’s birth. Then we went into Newton-Wellesley Hospital to
visit the new arrival.
I don’t remember overeating before the massage, but during
the massage, I had an upset tummy and I was frequently burping. Then on the ride into Newton, a major stomach
upset developed. In fact, clearly a
MAJOR event was underway. The
anticipated pleasant visit with baby and parents was cut short, as my surgeons advised
me to come back into the Beth Israel Emergency Room for a CT Scan to see what
was wrong. During the ride into BI my
tummy was so upset that I had cramps in my abdominal muscles (the ones cut by
the surgery). Definitely NOT BORING.
When asked about the level of pain associated with the
stomach upset, I said it was an 8. By
far the highest level of pain I reported in the entire series of events since
May 26th. I wasn’t tempted to
barf, but the pain was intense. They
gave me a big tumbler of water laced with contrast dye to prepare for the CT
Scan, instructing that I had 2 hours to get it all down. Which I did, but it was a major effort to swallow
all that liquid. Amazingly, by the time
they had me on the table being scanned, the stomach ache was gone. It was as if all that drinking flushed
whatever was causing the problem away. But
the CT Scan revealed that my feeding tube was in my stomach – not in the
intestine where it should have been.
So they kept me overnight in the ER so that I could have the
feeding tube re-inserted into my intestine the next day. This was done in Interventional
Radiology. You lie on a table that
detects x-rays, and they insert a wire into the tube and manipulate it so that
it exits the stomach and goes into the intestine. This should be easier than normal, as the surgery
removed the sphincter that closes off the stomach from the intestine. But easy it was not. They are manipulating the wire through your
nose, and your nose is quite sensitive.
For the first 30-40 minutes they did not make any headway. They seemed about ready to give up when they
finally got into the intestine, and pushed it around a corner into exactly
where they wanted it to go. Relief! Man, do I ever not want to go through that
again. This is the 4th time
the tube has had to be set, replaced, or repositioned.
The following Monday we met with Dr. Kent, the surgeon. I was given permission to change the feeding
tube schedule from 24 hours per day to 16 hours on and 8 hours off. The goal is to consume almost as much liquid
nourishment, so the insertion rate was increased. It is great to have some time when the tube
is not connected to the pump, but the tube remains, just taped behind my ear
for my time off. Having it behind my ear
means it is less directly in front of my mouth, thus making it easier to eat.
I was also given permission to start the new Multiple
Myeloma treatments. So on Wednesday, I
had the first of 8 weekly infusions. The
stuff being infused is Daratumumab. It
is not chemotherapy. Instead it is antibodies
which attach to Multiple Myeloma cells and enable killer white blood cells to
attack them and wipe them out. So it is
very targeted therapy. Unfortunately,
people frequently have reactions to the infusions; in anticipation, they give
you powerful pre-treatment drugs that include steroids and Benadryl. They also administer the first infusion very
slowly so that they have time to counter-act any adverse reactions. The net result is that the first infusion is
an all-day affair. Luckily, I did not
have any reactions. I did sleep like a
baby in response to the Benadryl. What I
didn’t realize until later that night was that the steroids they gave me were
4X as powerful as the steroids they used to give me with the Velcade. So I was really wired at 11PM that
night. I took a lorazepam to bring on
sleep, but I didn’t actually turn in until 1PM.
So far I have had 3 Wednesday infusions, and I have not had any reactions
yet. Each week they increase the rate at
which they administer the infusion, so they take less time. But the minimum is still probably 3 hours for
the infusion and 2 hours ahead of time for bloods, a doctor or nurse interview,
and the pre-meds.
On week 3 Dr. Levine ordered a free lambda test. This is the test that measures the intensity
of my version of Multiple Myeloma. It
had gotten as high as 2130 during the time I was being diagnosed with the
ampullary adenoma. After 2 infusions it
was already down to 976. At any other
time we would have said that was a very concerning, high reading, but after
getting to 2130 it seems almost benign.
Here is the latest long-term graph of Free Lambda:
The spike to the right exceeds the level of the free lambda
back in 2012 when my bones were disintegrating.
Dr. Levine says the high readings may have been exacerbated because my
body was fighting off a major infection following the 5/26 incident. When fighting an infection, your body
generates lots of white blood cells.
Free lambda is one of the components that goes into making white blood
cells. With Multiple Myeloma, it
produces more free lambdas than needed and many of them don’t successfully
become white blood cells.
Here is the last
year or so of that graph in case the full graph is too small to see the details:
On 8/2/17, the day we started the infusions, the reading had
receded to 1778. Still high, but not
over 2,000.
I am still on the feeding tube, but now for 12 hours on and
12 hours off, basically overnight plus a few hours. I discover I cannot hear the alarm on the
pump when it runs out of fluid or has a blockage. It is a pure high-pitched sound, and unless I
am right next to the pump, I simply cannot hear it. Much to Barbie’s concern and
astonishment. Guess a hearing test is in
my future, along with everything else. The good news is that I am gaining back
weight. I am up to 171.6 this morning,
up from a low of 157. The next time
there is a problem with the tube I am going to lobby that I just do without it,
instead of having it reinserted.
The day after Wednesday’s infusion, we made it up to Cow
Island, where we are enjoying being in this lovely spot. And I have set a new record: I have avoided
an emergency for unscheduled visit to the hospital for over a week! Pretty boring, but very welcome.
I am feeling good, and I am beginning to do some projects
here on the island, such as running the log splitter in small time segments. I
do choose to spend more time on the computer doing things like this blog than I
otherwise would, but that is OK as well.
Pretty boring. We really hope it
stays that way.
