More of the Same

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.