The view from Feldberg 7

My term as a hospital captive is soon going to come to an end.  Monday, 10/8, I will be partially released - from the security of the hospital, to the luxury and freedom of The Residence Inn at Fenway, a hotel (pretty fancy) that is a 15-minute walk from Beth Israel.  In effect I will be on parole.  Not totally free in that I must have a responsible adult with me 24/7, but on the outside.  I will have many appointments at the hospital (6 in 16 days) and I will be accompanied so that if I should have a CRS event, somebody can get me to the hospital for treatment.  But I will be free to enjoy what is available in Boston.  And there is lots to enjoy.  Including HUBweek (see 2018.hubweek.org), which has lots of events promoting technical innovation or exploring how to plan for the future.

Meanwhile, things here on Feldberg 7 , the floor reserved for hematology/bone marrow transplant patients and where  I have resided many times, things go on in a very predictable pattern.  Every 4 hours they take your vitals (blood pressure, pulse, oxygen %, & temperature), presumably to determine if you are still alive.  I can order food from the room service dining facility, but that gets a bit repetitive.  Or Barbie can bring more interesting food in from outside, especially apples from Honey Pot or soups from a lunch spot she really likes.  A nurse delivers pills and takes blood samples.  I have a PICC line for blood withdrawals, so they don’t have to puncture me each time.  PICC stands for Peripherally Inserted Central Catheter, which is a narrow tube inserted into your upper arm and extending through your veins into a big vein that carries blood to the heart.  They administer medicines, fluids, or nutrition in through the PICC line or take blood out through the PICC line.  Amazingly, the line has not gotten obstructed.  Given how often my feeding tube got obstructed in the summer of 2017 after my Whipple surgery, I am happily surprised that the PICC line has had no trouble like that.  I would have thought that the natural clotting of the blood would have caused blockage.  But they flush the line after each use to keep it clear.  They also say they have a form of draino if it does get blocked, which they have not had to use yet.

There is an extensive care team here at Feldberg 7 at all times.  Feldberg 7 is the Hematology Oncology ward, so everybody here has some form of cancer that affects the blood or blood system.  Leukemia, lymphoma, myeloma, etc.  There are lots of ways the blood system can go wrong, and lots of ways they can fight it.  As I have done the surface research into my own disease I have come to think that maybe it is more amazing that the normal blood system works correctly, it is so complicated.  The care team consists of (in descending order of status) doctors, physician’s assistants, nurses, physical care assistants, and cleaning staff.  These were my care givers on Friday, 10/5.

Carlota, my PCT (Personal Care Technician).

Julie, my nurse.  The document in her hand is the order that accompanies the blood vials she has just extracted on their journey to the blood testing lab or the company running the clinical trial, now Celgene.

Ijeoma, my Physician’s Assistant.  She was born in the US to Nigerian parents who were studying here.  She was raised in the Eastern Region of Nigeria, and then returned to the US for her studies.  She has recently completed her dissertation for a PHD, so she is quite accomplished.  We have had quite extensive discussions about where each of us have lived in Nigeria, what we experienced there, and what needs to happen to make Nigeria work better as a country and a society.  We haven’t come up with any magic bullets in our conversations, yet.

This is the full medical team.  Dr. Nahas to the left, is my oncologist.  Ijeoma in the middle, and Julie to the right.  As you can see, I have lots of women taking care of me.  There is the occasional male doctor, nurse, or pct, but they are a very small minority.  

All day, every day, the nurses check on you and do medicines and bloods.  Julie was the nurse who administered the CAR-T Cells on Day 0 of this process.  Every day about mid-morning the PA comes around, asking if I have any new symptoms, listening to my lungs and heart, ready to recommend any changes in treatment.  But I always have disappointed them during this stay, as I have had no adverse reactions.  Later in the morning the complete medical team does “rounds”.  The doctor, PA, & nurse arrive for an official visit.  The doctor performs another listen and general evaluation, while the nurse and PA provide any observations they have made in the last 24 hours.  Since nothing externally visible is happening, these rounds are short and sweet.  I recall when I was in for the Whipple, the team on rounds consisted of many doctors, residents, and interns, in addition to the PA and nurse.  Presumably that was because I was a much more interesting subject, as I was recovering from 9 hours of surgery.

The markers they track to assess a possible CRS (cytokine release syndrome) event are still doing nothing.They have reduced the blood testing to once a day, so it is not so bothersome.

Barbie comes in on weekends and Brian, Brendan, and Jack have come in for visits.  The grandchildren exhibit a level of vitality that simply is not seen on the hospital floor.  The visits actually occur in a family room just outside the official confines of the Hematology/Oncology ward, as children under 12 are not allowed into the ward.  They are far too dangerous as sources of infection to be allowed into the ward.  Many patients in the ward have immune systems that are seriously compromised, and exposure to germ factories of 5 and 3 years old could be disastrous.  Generally, we have a full schedule of eating something, reading a kid’s book, and playing with sterile gloves.  The gloves get inflated to be a cross between a balloon and an udder, and then bounced up into the air and fought over.

Eventually they do pop and leave shreds all over the floor.  It turns out that normal balloons, with their narrow necks, are much better designed than gloves for tying off.  It is really hard to gather the wrist of the glove and effectively tie it, so it holds air.  Could it be that these gloves were not designed to be used as balloons?

I am looking forward to my release tomorrow.  Then it is onto a new stage of this adventure.  They have not chosen to do any tests of my free lambda, the normal test for the level of my multiple myeloma.  The reason advanced is that the free lambda is a slowly reacting marker.  It does not react immediately to changes in the underlying level of the disease.  It is a lagging indicator, so there is no point in testing it too early.  I believe they will test in on my final day, so we will then get an indication of what has happened.  Needless to say, my fingers are crossed.  The ultimate test is the bone marrow biopsy.  Since tomorrow is Columbus Day and since Barbie needs to get back to Stow for piano lessons and a chorus rehearsal, the bone marrow biopsy will be done on Tuesday morning.  It shows what is happening in the bone marrow itself, so there is no lag.  But the reports of the bone marrow biopsy take 10 days to 2 weeks to come back, so there is a lag built into them a well.  Either way it is hard to get a good reading on what is happening with the disease.  It is easy to tell yourself to be patient, but difficult to sit and wait for the results.