I feel remiss in that it is more than 2 months since my last
blog post. I’ve been waiting for good
news to post, but it just hasn’t happened.
The current treatment has prevented my Multiple Myeloma from racing
away, but it hasn’t brought the numbers down either. Here is the latest graph, as of last Friday:
The latest Free Lambda reading is 4385, which up until last
October would have been a new high.
There is some suspicion that the last 2 readings may be inaccurate, as
tests for other patients have come back unexpectedly high. But my bones feel as if the disease is
rampant, so I am not holding out much hope that the numbers are wrong. The orange line at the bottom right of the
graph is intended to track the current treatment plan (Carfilzomib, Revlimid, & Dexamethasone with Daratumumab
as an enhancer). The dip to the
right is an attempt to show that in the third round of treatment the Carfilzomib
infusion is skipped in week 2. It will
resume in week 3.
Actually, my body feels like there are 3 completely
different things wrong with it. In fact,
while I was taking significant pain killers, it felt like there were 4
different things wrong, as I had a wicked itchy back as a result of the pain
killers. Luckily, cutting back to just
Tylenol has removed that problem, so I can now sit without squirming or
continually scratching.
The 3 things are really quite different. First, my chest, ribs, and upper back have
significant bone pain. My upper back is
quite bent forward as a result of compression fractures of upper vertebrae, and
if I stay vertical for prolonged periods of time (such as composing documents
on my computer), my back really hurts.
Plus I have a break in my sternum, so a doctor just this afternoon said
a brace to support my upper back would not work and would be painful. Since you move your ribs and chest all the
time when you breathe, there is no respite from the pain.
Second, when I do things with my arms lifted away from my
body or when I lift things (like the walker over obstacles), I get shooting
pains on the surface of my flanks. Not
in my ribs, but in the muscles just around the ribs. Nobody has explained why these pains are
happening, but they sure are. They
always ask you where your pain registers on a scale of 1 – 10. I generally have said things were in the
lower range. But these shooting pains,
especially as a result of a sneeze, can be right up there, 8 or 9. I am motivated to figure out what evokes
these pains, and I do my darndest to avoid those activities.
Third, my legs object when I put weight on them. They don’t hurt per se. They just feel like the joints are getting
compressed when I walk or stand up from a sitting position. They are telling me, “Don’t do that!” So sometimes I sit poised to stand up, and it
takes real willpower to get in gear. For
a while I was describing the feeling as the legs felt fragile. And that made sense, as especially the ulna
in my left leg was quite washed out in an x-ray of my leg. I’ve had radiation for my left hip and upper
leg that worked well. I’ve had lesser
radiation of my lower left leg, but there has been no corresponding feeling of
improvement. But what impresses me is
how different the feeling in my legs is from the feeling in my chest and
back. Not a hurt per se, but a warning
signal. I do try to get out for a walk each
day, but am I ever slow. I get to our
neighbor’s driveway and turn around. The
doctors tell me just getting out there and walking is the key thing, but I sure
do miss the times when I was able to go for a run every morning.
That’s more about my symptoms than you ever would want to
know. We are keeping at home as much as
possible. Barbie does all our shopping
and errands, as I am immune-compromised.
She has begun teaching piano lessons using facetime and her laptop, and
while it is not ideal, it does keep the students engaged. Plus it puts more responsibility on the
students, which is a good thing. And
while she is at it, she gets to see what their instrument setup is at
home. Frequently she has made
suggestions for improvements. She
devotes her Fridays to driving me into Beth Israel for my treatments. While I am getting infused, she goes for
walks around the Longwood area, and it is amazing how many other people she
observes out getting fresh air while keeping their social distance. We keep in touch with family and friends via
Zoom and Facetime, but we do miss having the kids on our laps when reading them
a story. About the best we can do is to
challenge the 7 year-olds to games of Connect-4 via the phone.
