The Hardest Yet

The period covered by this blog post has been the hardest period for me yet.  And that includes the Bone Marrow Transplant, which was a near death experience, and the Whipple surgery, which really took the starch out of me.  Either the underlying disease or the regimen of chemo that I am currently undergoing has really thrown me for a loop.  I have trouble doing stairs, I shamble around because my legs don’t work right, and I have a major energy deficit.  I would have written 2 blog posts instead of this 1, except I had no energy, and it turns out that producing a post takes some umph.

The good news is that when I am able to receive the treatments – Daratumumab, Dexamethasome, & Pomalyst – they do knock the underlying Multiple Myeloma down.  But they had to adjust the initial doses, as I was reacting strongly to the medicines, and as a result I ended up off the treatments for about a week.  During that week the disease sprang back to almost the level where it had been prior to the treatments, which was pretty high.

Enough of a pity party.  What’s actually gone on?  Here is the graph of my Free Lambda, the measure of my Multiple Myeloma:

Clearly in early February the disease took off.  The initial treatments of Dara, Dex, & Pomalyst brought it right down.  Not to normal levels, but at least close to where it had been during the CAR-T treatments.  But then reality intervened.  First, they were concerned about the blood tests that measure kidney function, Calcium and Creatinine.  [Kidney malfunction is one of the endgames for multiple myeloma.]  They were elevated and I was having an array of side effects, so they skipped the second week of Dara.  Then I got a terrible rash, so they decided that I needed a lower dose of Pomalyst, so they had me stop taking that as well.  And the disease popped right back up.  With the lower dose of Pomalyst and the resumed Dara, the progression has been down, but not quite as dramatically as at the start.  But you can see a downward trend, even if there is a pretty great variation in the measurements.

Meanwhile, just to make things interesting, other things have been going on.  On March 2 we hosted an Iranian dinner, which we frequently donate to a service auction at our church.  Since the prior Wednesday I had been feeling poorly.  I was way off my feed, and I took lots of naps.  I probably overate the Iranian food, as Barbie cooks some great dishes for that meal.  But almost as soon as the party was over, I was stricken.  Off to bed, feeling terrible.  Ditto the next day.  I felt incredibly bloated, and the Iranian food was going nowhere.  A snowstorm was due on Monday, and clearly I was not doing well, so Barbie was talking about going into the Beth Israel ER.  I tried to ignore her suggestions, but at 5:30 I threw up the bulk of my prior night’s meal, and we were off to the ER.  Long story short, I had a small bowel obstruction, which is where your intestine is blocked by a knot of scar tissue, and nothing is getting through.  The normal remedy is for them to stick a tube down your nose and throat and empty the contents of your stomach so that the pressure is relieved.  Vomiting at home and again in the ER had done a pretty good job of emptying my stomach, so I was spared the nose tube.  They gave me some contrast dye to see whether things were “open”, and they were.  But they kept me in the hospital for 3 days to make sure the intestine was healing and nothing more was going on.

All of which had nothing to do with multiple myeloma!  Just an opportune time for a random event to strike.  Presumably the scar tissue was the result of the Whipple Surgery I had in the summer of 2017.  It was just waiting around for me to be down because of the multiple myeloma.  Seeing me down, it chose to kick me.  Thanks.

That was just 1 of the 5 hospitalizations I have had since Feb. 8.  The other 4 have been the result of concerns about my calcium and creatinine levels.  It turns out that for me this combination of drugs leads to dehydration.  So I am supposed to drink 2 liters of fluid a day.  I never come close.  When I do, I feel bloated, almost like having another bowel obstruction.  But the result of dehydration is elevated calcium and creatinine, which sets off alarm bells.  Here is a graph of these blood tests:

Calcium is graphed against the left axis and Creatinine is graphed against the right axis, so the graphs line up.  The result is the normal max for each overlay the other.  So I go in for an infusion of Dara, they see high levels of Calcium and Creatinine, and they admit me to deal with the dangerous levels.  At first they gave me a medicine to reduce the level of Calcium, as well as multiple bags of IV fluids.  Later admissions they simply gave me IV fluids, which clearly take care of the elevated levels.  Meanwhile they would take x-rays, MRIs, CAT-scans etc., to diagnose my other ailments, none of which they ever found a reason for, other than general reaction to the chemo.  Or reaction to the underlying disease.  Take your pick.

There was an especially important time just recently when I was NOT allowed to be in the hospital: Barbie’s 40^th Anniversary Concert.  A crisis was simply not allowed.  Should they have decided to keep me, I was going to walk out AMA (against medical advice).  It never came to that because they gave me preemptive bags of IV fluids every other day leading up to the concert.  The concert was wonderful.  A complete triumph for Barbie and the Sounds of Stow Orchestra and Chorus.  And a sell-out to boot!  We had the requisite party here at home afterward, and I headed into Beth Israel for my Monday batch of fluids.  So I never even had to help clean up!

Along the way there have been various interpretations of events that I hope make sense.  One symptom I have pretty badly is bone pain.  Especially in my back and chest, the bones just hurt.  Dr. Nahas pointed out that my latest bone marrow biopsy revealed that my bone marrow was 80% plasma cells, the bad guys.  The normal level of plasma cells in healthy bone marrow is 5%.  If the chemo is successful in attacking the multiple myeloma cells in the bone marrow, the residue of the dead MM cells could be clogging up the bone marrow and acting septic.  So the pain may be a function of success!  But then again, maybe not as the free lambda numbers go back up.  At any rate that is a hopeful note for what I am going through.

In general it is pretty down to be feeling poorly, having no energy, and wondering what is going to happen with my disease.  But if the disease does come under control, then the travail will certainly have been worth it.  I am perfectly willing to take some body blows in order to bring the underlying malady to heel.  The problem is the element of doubt.  What if the disease evolves yet again around the current treatment and there is no light at the end of this particular tunnel?  What did Emily Dickenson say?   Hope is the thing with feathers - a crucial element in the emotional mix to get me through this episode.

As always, my family and friends continue their support and kind wishes throughout the ordeal. The doctors take time explaining things – but they just do not have answers, as the treatments available to me now are just too new to have generated meaningful data.  As a multiple-times-over loser, I now qualify for a Phase Two clinical trial in which a new drug is paired with a vaccine, in the hope that the combination will better attack the underlying MM.  I guess one positive in all this is that at least I can contribute to the advancement of knowledge about this disease.