Bad News

Well my Free Lambda has achieved a new record: 8171, a 28% increase over the prior record of 6399.  The current record reading follows two treatment-free weeks, as the current schedule involves three weeks of treatment, followed by a week off to allow my body to recover from the accumulated effects of the treatments.  At the end of my “time off”, I was feeling better, as I always am pretty beat up by the conclusion of the three weeks of treatment.  But apparently the disease managed to go on the offensive as well.

Barbie notes that the highpoints of the graph form a remarkably straight line, moving diagonally upwards in a predictable trajectory.  One hopes that as the dosage of Carfilzomib increases with every round, perhaps the current treatment can eventually get things under control, though the graph does not suggest that it necessarily will do so.

Now that I know the latest number, I can attribute various symptoms to it.  On the mornings that I take Revlimid pills (every other day), I must inject myself with the blood thinner Lovenox.  Sunday’s tiny injection site in my tummy bled during the day, and through the night, in spite of applying bandages and gauze pads.  Could this be related to the altered state of my blood?

Another symptom that may be attributable to the activity of the disease is mouth sores that refuse to heal.  {I accidentally bit my cheek and lips while chewing on something.  Not unusual, and they normally heal in a day or so. } These have persisted, and they hurt.  I am not much interested in eating, and these sores make me less so.  In general, I am a shadow of my former self.  My football weight was 195, and my running weight was 185.  Now I range between 145 & 150.  For some odd reason, I eat much more slowly than I used to.  I actually chew things I used to just inhale.  I rarely finish a full plate of food, and even Barbie eats faster than I do.  She is trying to load my diet up with calories to avoid further weight loss, just the opposite of what she does with her own diet.  I am managing to consume an Orgain shake in the afternoons, endeavoring to eat more frequently.

But there are ways that I am better than when I posted the last blog update.  The severe pain in the muscles on the surface of my ribs is gone.  Thank heaven.  The medical team never had an explanation for that pain, but it is certainly great that it is gone.  For months I was dependent upon the stair chair to get between our first and second floors.  But recently I have taken to walking up and down the stairs from the kitchen to my office area.  It is surprising how much exercise doing stairs generates!  I get winded, especially going up the stairs.  But these stairs have a good handrail that I clutch onto so that I am confident that I won’t fall.  I do recall getting winded running up 13 flights of stairs in the Paine Whitney Gym at Yale to keep in shape during the winter.  Somehow, that was different!

My legs have gotten better as well.  They used to warn me not to put weight on them.  That fragile feeling is now gone, but it hasn’t resulted in an ability to walk faster.  It is now time to plant a garden; I try to spend an hour or so every day on all fours, pruning, pulling weeds, or putting out mulch in the garden.  My role is to keep the permanent plantings (raspberries, blackberries, asparagus, grapes) under control.  The effort feels good, and I generally manage not to overdo it. 

I was not able to plant a garden last year because I broke my hip on May 3^rd.  This year, I am just not mobile or strong enough to consider planting, either.  But late in the winter a young fellow named Patrick asked if he could garden part of our property.  Part of a long-time Stow family, he works at a place in neighboring Bolton that features exotic animals which he intends to feed with produce from his garden.  It was great to have our perfect set up taken over by a young, able-bodied enthusiast!  He has greatly expanded the original garden, claiming part of the horse pasture, using a tractor and harrow borrowed from the neighboring orchard.  He will need to keep the critters at bay, but that is his problem.  It is great to see the land being productive again.  As he puts it, the produce will feed the “rodents and reptiles.”

The solution for the new high Free Lambda reading may be a clinical trial that is being run out of the Dana Farber Cancer Institute.  Unfortunately, when the coronavirus pandemic hit, they shut down all clinical trials.  They are currently in discussions about when and how to open new trials, so when I go in for my treatment on Friday, perhaps I will learn if a new option for me exists.  If a patient doesn’t qualify for a trial, they sometimes allow the treatment to go ahead, on a “compassionate basis”.  Needless to say, I am quite interested in the results of their current discussions.

So, I have felt worse, but I am scared by the new number.  Scared enough to ask if the new Free Lambda reading threatens harm to organs such as liver or kidneys that process blood.  No answer yet.