My last post was from the hospital on 2/21, when the tedium
of the hospital was overwhelming. I did
get out on 2/26, and I spent the next 16 days with my son & daughter-in-law
in Jamaica Plain. They have 3 boys, ages
5, 3, & 6 months, so life there was rarely boring. Generally the boys were always interested in
having stories read to them, fighting with each other, running the track that connects their living room, dining room, kitchen, & front hallway, and torturing their parents. I also became a surprisingly bad player of
Connect-4. To avoid interfering with the
daily activities of their nanny, I endeavored to get out during the week and
use my presence in JP as an excuse to visit Boston cultural icons I had never
(or not recently) visited. I had to be
accompanied by a responsible adult, as who knew when a nasty side effect of the
CAR-T cells would strike me. I managed
to visit the New England Aquarium, the Harvard Museum of Natural History, the
ICA, and the MIT Museum before a combination of a bad cold and a major
snowstorm shut the Boston cultural tour down.
The MFA and the Isabella Stuart Gardner Museum were next on the
calendar, but I’ll have to drive in from Stow to take them in. My actual and would-be companions (Sandy,
Dave, Scott, Paul, Myle, Kate, & John) were not always recognizable as
responsible adults, but I appreciate their being willing to put up with my
company.
I have been a home-dweller, not a guest imposing, since
Wednesday. It is great to be on home turf. In spite of wonderful hospitality and very
entertaining grandchildren in Jamaica Plain, there is no place like home, to
coin a phrase.
Originally I was going to have the 30-day bone marrow biopsy
(bmb) on Wednesday, which was rescheduled from Friday due to a doctor
conflict. But they neglected to tell me
not to take my lovenox shot Wednesday morning, and I dutifully jabbed myself,
in spite of hating the process. Apparently
a bmb is incompatible with lovenox, so the bmb had to be postponed. But they did take all sorts of blood tests on
Wednesday, so they only had to take a few on Friday.
The bmb is quite an elaborate procedure. They have you lie face down on an examination
table. Lying face down is difficult for
me, as the curvature of my back means it takes me quite a while to flatten
out. Doing so while lying on my back
actually feels quite nice, as the tightness of my chest gets relieved, and it
feels quite good. But lying face down
does not feel so good, and the result is that you can only see the people on
the side where your face is turned. They
pick out the part of the hip they are going to aim for, and mark it with a
magic marker. Then they surgically clean
the area and drape it with sterile dressings.
Then they shoot a number of pain killers in the immediate area, to
completely numb the surface. The shots
themselves hurt a bit, but presumably they are preventing much greater
pain. They ask periodically if you are
feeling any pain, and generally the answer is NO. But just think, the Civil War was not that
long ago, and they did amputations without any anesthesia. We have come a long way. Eventually they start to excavate and
penetrate. It doesn’t hurt, but there is
enough pressure back there that it feels like it should. Clearly something invasive is going on, and
it takes just about all the doctor’s strength to penetrate the bone. They go in several times, first pulling out
actual bone marrow, then pulling out an aspirate, or liquid from the bone
interior.
About half way through the process, Doctor Nahas remarked
that my Free Lambda reading on Wednesday was a big improvement. I hadn’t checked the BIDMC Patient Site to
find Wednesday’s result. 570.4! Down from 875! That means the CAR-T cells are working. That is a 35% reduction. Still a long way to go (normal max is 26),
but strong movement in the right direction.
Here is the graph of the last 18 months of Free Lambda:
Suddenly, all the pulling and tugging in my back/backside
was irrelevant. Anyway, they don’t get
the results of a bmb back until at least a week out, which makes the Free
Lambda test seem lightning quick in comparison.
Last time we had to try to convince ourselves that a near unchanged Free
Lambda reading was actually good because it wasn’t getting any worse. Such a rose-colored-glasses interpretation is
no longer necessary. Things are really
getting better, to a significant degree.
I came home to my normal computer, my normal bed, a kitchen
where I’ve known the rules for a long time.
I had 1800 emails to wade through.
As of today I am all caught up. I
am back to current state as Treasurer of the Stow Community Housing Corp, which
owns and runs 140 affordable apartments in Stow. The last 2 snow storms have resulted in a
great deal of tree damage in our yard, and we had a crew come with a bucket
crane to cut out all the broken branches.
Then they ground all the branches they could get to into wood
chips. The place looks much better, but
once the snow is gone there will be a massive cleanup required. Then just today people came to fill in the
trench across the driveway cut to lay the cable from the barn to the house for
the solar panels. They cut the trench
back in December, but cold weather and then snow foiled all the dates set for
filling in and finishing off the trench.
In other words, life is getting back to normal.
Until the positive reading on the Free Lambda, my planning
horizon was at most a month. At first
the hospital stay and the JP stay dictated what I would be doing. Now that we can see that things are really
getting better, perhaps we can look a little further out. I have decided once again to organize the
Greg’s Legs team to participate in the Boston MMRF 5K Run/Walk on 4/29. So everybody should expect a recruiting /
donation begging email in the near future. If you don’t drop me an email, and I’ll add
you to the dunning list. I will contact
the back doctor to see if anything can be done to straighten out and lengthen
my back. We spoke with him back toward
the end of January, but he said as long as the effects of Multiple Myeloma are
still being felt, making repairs to individual vertebrae would only result in
neighboring vertebrae breaking. The
timing of when this should take place is probably a function of how fast the
Multiple Myeloma recedes.
My overwhelming emotion is gratitude. Thankfulness that I have been lucky enough to
participate in the CAR-T cell clinical trial.
Hopeful that my improvement continues to the point where I reach the
state of “no observable disease” which so many other participants in these
clinical trials have achieved. To see
the results of this clinical trial as announced at the American Society of
Hematology annual meeting in December see www.epgonline.org/us/news/results-from-phase-i-trial-of-bb-2121--a-car-t-cell-therapy--for-multiple-myeloma---celgene---bluebird-bio. This data was released just about the time I
was being enrolled in the trial, so it does not include me. And many of the participants at that time had
not been in the trial long enough to have any results. But clearly the results were very positive
for those in the trial for an extended time period, and there is no reason I
should not see the same results in time.
Again, gratitude. Wow, have I
been lucky!
