A Little Drama

Last post, I was up in the air.  My Free Lambda was turning worse, but I was feeling well.  So things were indeterminate.  No longer.  The Free Lambda has gone into record territory.  Here is the Free Lambda graph through February 11, when a treatment decision had to be made:

Dr. Nahas directed a three-part treatment regimen: weekly infusions of Daramatumumab, daily Pomalyst pills, and supplements of Dexamethasome, a steroid.  These all started Friday, 2/8, and all seemed well.  Other than the after effects of a pretty bad cold, I was still feeling well, but the numbers were a real source of worry.  Dr. Nahas said if the numbers continued their upward trajectory, they would use apherisis to filter the bad guys out of my bloodstream, before they clogged up my kidneys.  This would be a band aid approach, as it is a response to an emergency situation, a way of preserving kidney function temporarily; obviously they would have to find a way of controlling the bad guys to avoid dialysis.

Well, before I could come in for my second weekly Dara infusion, I began to feel as if I was reacting to something.  A very itchy back, muscle cramping at the least provocation, shortness of breath, and a pain on the exterior of my left chest.  These symptoms started on Tuesday and became real on Wednesday.  I reported them to the BI staff on Thursday.  They called me back, and told me to check into the Emergency Room.  I suggested that I would get some things done that morning and drive myself in early that afternoon.  No, I was not to drive, and I was to come in right away.  They were concerned that I might have a cascading reaction that could be life threatening.  So I packed for a couple of days, and we arrived at the Emergency Room at noon.

The Emergency Room is basically slow motion chaos.  I wonder if they would have prioritized things so that they might have dealt more quickly with me if I really did have a crisis situation.  In fact, it took a long time to check in, then they took vitals and blood tests pretty quickly.  But then another hour + passed before I was led back to a bed.  Then it was more waiting.  Eventually they took an X-ray of my chest and put in an IV for administering fluids.  That was going to be in anticipation of a PET scan, but that never happened.  Finally I was transported to Feldberg 7, the hematology / oncology ward where all the nurses know me.  I arrived at 11:55 PM, but with check-in and various visits, it was 1:20 AM before I was actually able to get to sleep.  Then of course, they wake you at 4 AM for vitals and taking more blood.  Lots of incentives NOT to report anything out of the ordinary to the medical staff.

By this time I felt I had done the right thing, in spite of the travail of the Emergency Room.  Friday was the day I was scheduled for my second infusion of Dara.  They held off, pending another series of tests.  I had a lung scan to determine if the pain in my left chest was a pulmonary embolism.  They took yet more blood.  Bottles, not vials.  One wonders if the medical profession has never gotten over the idea of bleeding patients to relieve them of bad humors.  By this time the shortness of breath was gone, but Thursday/Friday night my left chest hurt more while just breathing in bed.  The medical team came by on rounds late in the morning, and they explained what the various tests were designed to tell them, but they had no answers at that time.

I had a late lunch, and then Barbie came in for the afternoon.  She brought underwear and supplies for the weekend, as at that time we just assumed I was a prisoner for the weekend (a 3-day weekend).  She planned to drive up to Vermont on her own Friday night, after the holiday weekend traffic had thinned out.  After all, I had heard nothing from the medical team, which to me meant no decision.  I actually sought out the doctor who had led the rounds that morning, and he had good news about the latest Free Lambda tests.  He didn’t say anything else, but maybe my asking about the results from the tests sparked something.  At any rate, Barbie & I were walking past the nurses’ station on the way out when Bridget, the supervising nurse said, “Oh, I hear you are leaving us!”

What?? We had heard nothing.  If the news had come 5 minutes later, Barbie would have been on the road, probably stuck in traffic, and not very eager to turn around and come back to the hospital.  Apparently the tests ruled out an embolism, and the results of the Free Lambda tests were very positive.  Here is the graph of my Free Lambda through Friday:

That is a pretty steep decline.  The value is still higher than when I was first diagnosed in 2012, when my body was falling apart.  But definitely going dramatically in the right direction.  That plus my overall vital signs were positive, and I had told various doctors that I wanted to make a special event in Vermont: a joint birthday party for 3 grandchildren, where they would be joined by the other 3 grandkids.  So our entire family would be together.  Apparently it is not uncommon for people to have a reaction to the Daratumumab, and perhaps my symptoms corresponded to that reaction.  Actually, I never spoke with any medical staff, so that is just a surmise on my part.  But I did not hesitate to get out of there as fast as possible.  I am to call in on Tuesday and arrange when the Dara infusions will resume.  Meanwhile, I am a free man.

In fact, I am writing this blog in the lodge at Pico Peak, where Barbie and Andrew’s family are skiing.  Skiing is one of those athletic things that I am resigned never to do again.  And sitting here in the lodge observing all the travail of putting on all that gear, and then seeing people come in freezing cold, I wonder if it is worth it.  But clearly the kids enjoy it, and Barbie likes to bond with the kids as they are learning to ski.  She used to give Tyler (who is now going to be 9) a day of skiing together, but now Tyler wants to ski faster than Barbie does, so he entertains himself skiing backwards and twirling around, while she comfortably winds down the slopes.  In the afternoon, Barbie shifted companions, skiing with Emma, who also looks like she has a great time.

Needless to say, this has been an emotional roller-coaster for Barbie.  She felt guilty dropping me off at the Emergency Room and then taking off so that she could teach piano lessons Thursday afternoon.  But Friday morning she had follow-up appointment for some previous dental surgery, but she felt guilty not being in the hospital keeping me company.  I told her how it was hurry-up and wait as the various tests would take me away for a while, and then leave me in the room for an extended period of time before the next event.  At any rate, she came in mid-afternoon Friday, assuming she would come to Vermont and leave me for the long weekend at BI.  And she was feeling guilty about deciding to do that.  I told her not to worry about it, but that had zero effect.  So the unexpected release was all the more euphoric, as our expectations were so much the opposite.  Even this late in life, our expectations are not always accurate, and there is ample room for surprise.

In spite of the very positive turn of events for my Free Lambda, the level is still concerning.  Measured on the scale that was in effect in 2012, when I was diagnosed, the latest number is 1407.  The equivalent number in June, 2012, was 1329.  But clearly something has Free Lambda going in the right direction.  Is that simply the new medicines I am on, or is it the result of those medicines waking up the dormant CAR-T cells that seem to have gone on strike since November?  If the treatment that curbs the underlying Multiple Myeloma results in an allergic reaction, I’ll take the reaction in order to control the Myeloma. 

The combined Vermont birthday party was a great success.  Andrew concocted a cake with different symbols for each of the kids.  Steve from Minecraft for Tyler, a horse for Emma, and a Leo for Gabriel, a character from his favorite video game, Leo’s Fortune.  All these attacking a group of zombies.  It was especially gratifying to see the Jamaica Plain and Vermont cousins playing together Sunday afternoon.  The energy level was incredible!  Whoever came up with the idea of replacing old, worn-out, malfunctioning beings such as us old farts with young, energetic, new editions was a genius.