My blogging history:
2012: diagnosed with and underwent treatment for Primary CNS lymphoma in my brain.
2012-2013: blogged on Caring Bridge.
2013: moved to Blogger.
2017: diagnosed with bladder cancer and blogged through 14 chemotherapy treatments and 37 sessions of radiation therapy, each with its own t-shirt and musical selection.
2018 to February 2020: Treated every 3 weeks with pembrolizumab for spread of bladder cancer to lymph nodes. As of June 2020, continue to be cancer free.
This video was posted
on Facebook by a friend whose sister is undergoing treatment for a
difficult-to-treat cancer. In the same way I attempt not to spoil movies, I do
not want to bias your reaction to this, so for the moment I will hold my thoughts. But I would be curious to hear some
points of view.
Visiting with my
mother and sister dredged up an old memory. Actually, it was Barry who reminded
me of this incident, which occurred shortly before I left for college.
I was the second of
five children. When I graduated high school at 18, my older brother was almost
20, and my younger sisters were 15, 12, and 5. Our family had moved from St.
Louis to West Hartford, Connecticut during the summer before my senior year. This
move forced me to give up my friends, my top-10 high school academic rank, and many
extracurricular activities. Despite this, I managed to have a pretty good
senior year and made many new friends.
On a Sunday just
after graduation, my parents planned a family day trip to the Catskill Game
Farm, a zoo in upstate New York that has since closed (http://en.wikipedia.org/wiki/Catskill_Game_Farm).
My brother and I, and
perhaps my 12- and 15-year old sisters as well, were a bit old for this sort of
thing, but I would have gone along willingly if not for the fact that one of my
friends was hosting a big graduation party that day to which everyone was going. I can still remember
the pleas and the tears. But my parents were insistent that I go with the
family.
I remember very
little of the place because, although I am sure it was lovely, and I might have
enjoyed being there with my little sister had the timing been different, I
refused to enjoy it. But clearly the memory of that day stuck with me so strongly
that over a year later, when Barry and I started dating, I was still talking
about it.
Barry and I were
reminded of this because we were thinking about taking the family to a
performance of Disney on Ice during the winter break. But we recognize that
Joshua is probably a bit old for these sorts of activities now. He might be
much happier getting together with friends than going to a show clearly targeted
at younger children. This is exactly how it should be: children grow and their
interests change, and we parents and grandparents have to shift our plans and expectations.
We see this on a regular basis during our visits to Sharon. These days, the
children’s plans with their friends often trump whatever the rest of the family
is doing. This is especially true for the Sabbath daytime meal after synagogue,
when the older children often invite friends or are invited to their homes. Although
the selfish part of me misses having them around the table, I am thrilled to
see that they are so popular!
Barry and I have had
an ongoing discussion about this for a couple of years now, wondering if at
some point our going to Sharon so frequently might not make as much sense as it
did six years ago when we started spending most of our weekends there. Maya is
only 5, so we had decided to table this discussion for another year or two. But
as it turns out, we hope to table it for much longer. Some of you already know why:
our daughter Dina and her husband Aaron are expecting a third child at the end
of March. We are excitedly awaiting this new addition to our family.
It is quite cold
outside, but I have an appointment with my pulmonologist today so I will be venturing
out. I finally get to use the new scarf that Barry bought me when he was in the
UK, along with the new wine-colored LL Bean Mad Bomber hat I bought to match
it.
Other than my last
quick “do not fear, I have not fallen off the planet” posting, it has been
about a week, and a varied and busy one, since I last wrote.
We managed to squeeze
in two movies last week. The first was “Dallas Buyers Club,” about the early
days of the AIDS epidemic when, anxious to do anything and everything to extend
their lives, patients mobilized and tried to take things into their own hands
to obtain drugs that had not been approved for sale in the United States. I was
interested in this film because when we moved to New York in 1991, my first job
was at Lederle Laboratories where I was assigned to work on a new
antiretroviral that was in the first stages of development. There was enormous
excitement about this project, that this drug would be both more effective and
less toxic than the only approved drug at that time, AZT. We got the trials up
and running quickly. I had the opportunity to work with a terrific team and to attend
fascinating meetings, many of which were attended by vocal AIDS activists. But
about 8 months in, there were three deaths among patients in the trial. The
patients were all late-stage AIDS patients, but there was concern that the drug
was not working as had been hoped, was more toxic than had been anticipated, or
perhaps both. While the jury remained forever out on precisely what caused
these deaths, there was a decision to discontinue the development of the
compound. It was just around that time that, by coincidence, I heard from
someone at Pfizer, and the rest, as they say, is history. Still, it was a
wonderful introduction to an exciting area of drug research. Some years later,
a number of former Lederle colleagues ended up at Pfizer following a merger and
reorganization.
A small afterthought
to this story I have just told. You may be amazed, as I am, that someone who
can barely remember what day of the week it is remembers this trial from over
20 years ago in such excruciating detail. This will remain forever the biggest
mystery of this whole experience.
But back to the
present…the movie was excellent, although intense and somewhat painful to
watch. The acting was superb. There may well be some Academy Award nominations
from this one.
The second movie we
saw was “Inside Llewyn Davis,” the newest feature from the incredibly prolific Coen
Brothers. This movie is supposed to be somewhat loosely based on folk
singer/songwriter Dave Von Ronck, but can likely be viewed as a composite of
many such artists who lived from hand to mouth trying to make music in the
early 1960s. The movie told the story of a reasonably talented musician who could
not quite get his act together sufficiently to be successful, and was
ultimately so self-destructive that he even passed up an opportunity to join a group
that clearly was intended to represent Peter, Paul, and Mary. The music was
fantastic, and the audience were given free CDs of the soundtrack when we
purchased our tickets. Growing up in the suburbs of St. Louis through the
1960s, this world is rather foreign to me. But Barry went to Stuyvesant High
School in lower Manhattan in the 1960s, so the gritty streets of the Village
are very real to him. I don’t know if there will be any recognition from the
Motion Picture Academy, but Oscar Isaac, who plays Mr. Davis, was quite good.
John Goodman, F. Murray Abraham, and Justin Timberlake are also in the film.
We had a quiet Friday
evening and had Sabbath lunch at the home of friends who had also invited some
other friends from our Riverdale circle. As so often happens on the short
Sabbath afternoons of winter, we ended up talking and talking until Sabbath was
over. The food was yummy, the company enjoyable, and the time just flew past.
Saturday night we
finished packing and tried to get to sleep early because we had an early flight
on Sunday. We flew down to Florida to visit my mother and sister who live
there. My mother is no longer able to travel, and we had not been down to visit
since the family Disney World trip in June of 2011, having been a bit
preoccupied through much of 2012. It was good to have the chance to visit.
We were scheduled to
fly back to New York late Monday morning. We started hearing about the terrible
weather that has been moving up the East Coast for the past few days. But
fortunately, our plane took off, albeit about an hour and a half later than
scheduled, and the flight was less turbulent than we expected. As we started
our descent, it was clear that there was a thick cloud cover over the City, but
suddenly I saw something sticking out from under that blanket of white puffy
cotton. Barry managed to snap a photograph with his iPhone. You can click on the image to make it larger and more clear.Can you see what it
is? How cool is that? It was a delightful ending to a hectic few days.
Just want to let you
all know that we are well, we’ve seen a couple of interesting movies I want to
share and had a very nice Sabbath afternoon today with friends. We are going
down to Florida for a couple of days to visit family and in an effort to travel
light, I am not lugging along the laptop.
Hopefully we will
essentially jump over the storm that is moving up the east coast by leaving before
it moves as far north as New York and returning home after it has moved on its
way further north. It may be a bumpy flight tomorrow, though.
Two months ago, I
posted a piece about our friend Michal Chesal who had been nominated for the Juvenile
Products Manufacturers Association Super Hero Spotlight Feature for the innovative design and development of the Baby K'tan baby carrier. I am happy to
share the good news that Michal has won!
There is a piece
about Michal posted at this link. Thanks to all of you who voted for Michal and
helped to make this possible.
After all the bad
news of the last couple of days, I was happy to wake up early this morning and find
new Colbert Report and Daily Show episodes on the TiVO.
I was particularly
amused by a piece Colbert did on Amazon. I wanted to insert the video here but
for reasons I cannot understand I was unable to download it, so here is the
link:
This really hit home
for me. I have probably mentioned this here before, but although I do
fundamentally agree with the point Colbert is making, and I really do miss
going to regular stores and actually seeing and touching things (the recent
trip to the outlet mall was a notable exception), I cannot even begin to imagine
how I would have functioned during this past year and a half without on-line
shopping. Granted I would have saved a lot of money, probably enough to feed
many starving children around the world. But I would also be sitting here with
baggy old clothes, and I would have to send Barry out for every little thing I
need. Instead, our house is now well stocked with random items like Chapstick, toothpaste,
deodorant, and various cleaning items to last through a very long confinement
to quarters for at least our entire family of ten. Add to this American Girl
paraphernalia, Legos kits, Quadrilla, and Hex Bugs sitting in various Sharon
homes, all thanks to Amazon Prime and other on-line shopping, and we could
stock a few elementary schools.
My joy at the wonders
of the world wide web is somewhat tempered by the fact that early reports are
beginning to suggest that the New York Metro North rail conductor was using his
mobile device while driving that train early Sunday morning. I have for some
time now been grousing about the need for developing basic courtesy standards
for use of electronic devices. Talking on cell phones on airplanes, as appears
to be under consideration, would seem a very bad idea because people will
inevitably be yelling into those phones in the close and noisy quarters of the
cabin. But this goes far beyond making lives more pleasant, it gets to the
potential for putting our lives at risk. We all want to believe that we are
good at multi-tasking, but study after study, as well as simple common sense,
shows that we are not. The real question is, if it should eventually be
established that the conductor was in fact texting just prior to that horrific
accident, will anyone listen or care or change their behavior?
My memory works in
strange ways, sort of fits and starts of tidbits going in and out. For the past
week or so I have been incessantly humming the second movement of Beethoven’s
Symphony No. 7 in A major. This piece was used in the climactic scene in the
Oscar-winning movie from 2010, The King’s Speech, but I am not sure why
I started thinking about it again.
I mention this here because what I forgot to
write about entirely was that we saw a movie the other day. Barry, Dina, Aaron,
and I took all four children to see Frozen. Although animated and having
a PG rating, it is visually impressive even in 2-D (for various reasons we did
not choose to see it in 3-D), and a real twist on the usual fairy tale. Rather
than being a typical damsel in distress the girl at the heart of the story is
spunky and strong-willed, and does not wait for some prince to fulfill her
dreams. I don’t want to spoil the movie for those who have not yet seen it, but
this leads to a rather surprising outcome in the choices she makes. As Stephen
Holden wrote in the New York Times review:
They are significant departures from tradition in a film that shakes up
the hyper-romantic “princess” formula that has stood Disney in good stead for
decades and that has grown stale. Treacly, kissy-kissy endings are not enough
anymore. Nowadays, a princess has to show her mettle and earn her
happily-ever-after stripes.
We had a wonderful
first four days of Chanukah with our family. I do need to figure out how I made
sweet potato latkes in the past because the spices were not quite right, but the
regular latkes were a big hit – there were only a few left of the more than 40
good-sized pancakes. We had lots of fun watching the children open gifts. We
went with the big items for that first night, which included a lot of American
Girl paraphernalia for the girls and tickets to an upcoming basketball game for
Joshua (to be chaperoned by us). The second night was Thanksgiving, and we
gathered for another fabulous year of Thanksgiving fare prepared by our
children. Friday was a relatively quiet day, and then Joshua came over for
Friday night dinner and a sleep-over. We had bought him a puzzle/model of
Manhattan and we spent a few hours before and then after dinner working on
putting it together; it is still not quite finished.
After lighting
candles Saturday evening we headed back to our apartment to pack up the car so
that we could leave early this morning, anticipating the usual
end-of-Thanksgiving-weekend heavy traffic. We awoke quite early and were on the
road by about 5:30 am. I had shut down my computer Saturday evening and neither
of us had taken time to check e-mail on our cell phones before leaving. It was
only about an hour out of Sharon that I turned mine on and was shocked to see
an e-mail sent by our daughter Simmie in the wee hours of the morning telling
us that Ronen’s grandfather had died a few hours earlier. He had a full life and
had not been well for some time but that does not alleviate the shock and pain felt
by his family, including his very devoted grandson. Ronen’s parents, who had
been in Sharon for the weekend, quickly packed up to head back to their home in
New York and catch a flight to Israel, where Ronen’s grandmother still lives
and the funeral will take place.
Then, as we were
nearing New York, we heard the very distressing news of the horrific commuter
train derailment in the Bronx this morning. This one really hit close to home
because it happened just south of the Spuyten Duyvil station, the one very
close to our home from which I commuted in to and out of Manhattan for many of
my years at Pfizer. It was shocking to see the images of my old stomping ground
on television when we arrived home. At least four people died and another dozen
were seriously injured, with dozens more suffering varying degrees of injuries.
But in the interest
of not closing on an entirely sad tone, I will post a few pictures of the fun
we had with the children, and wish everyone a good week.