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.
First, I am posting a picture of the
latest piece of art created by our granddaughter, Maya, 11 years old. This one
is especially fascinating by its small size, painted on an 8 x 10-inch board.
Somehow, she was able to capture an amazing amount of detail with this small
canvas. Her talent never ceases to amaze us, two folks who can barely draw
stick figures. During this hiatus, Maya, who always finds productive ways to
keep busy, has been learning how to do card tricks!
We started watching a mini-series (I believe the entire series is just four episodes) on Netflix, “Unorthodox.” It is based on a memoir written by Deborah Feldman which traces her upbringing in the Satmar community in Williamsburg, Brooklyn, and her abandoning the community and the way of life when she was twenty years old and had been married for one year. There have been a number of similar autobiographical accounts of young men and women who have chosen paths radically different from the ones on which they were raised. It does not appear to be painting a particularly positive image of this close-knit Chasidic community, and I can certainly see how some will object to the clear bias against that way of life. I wish that both sides could find within themselves more patience and understanding. Call me naïve, but I feel that there has to be space in the world and within the Jewish community for different views and different approaches to finding the right path. We have yet to watch the last two episodes, but I believe we can predict how the story will end.
On a much lighter note, the late-night hosts have all returned to television, broadcasting from their homes with the help of family members and technology. On Monday night, Seth Meyers, host of “Late Night with Seth Meyers” on NBC, showed a short film obviously produced before the outbreak of the Corona virus that we found highly amusing, having lived for five years in the Boston area. It is a good five-minute break from all the misery around us!
Yesterday was our
granddaughter Julia’s 6th birthday. Both sets of her grandparents,
her siblings, and her aunts, uncles and cousins (14 of us in all) gathered for
a “virtual” birthday party. We sang “Happy Birthday” and watched her eat the
lovely pink cake she and her mother had prepared for the occasion. Last week,
when she was supposed to have had a real birthday party, the mothers of
a bunch of her friends brought their children to her house where they dropped
off presents and stood at respectable distances from each other and serenaded
her. Her dad did manage to take a brief video of this, which I am attaching
here. I am not 100% certain this will work, but I figured it was worth a try.
Here is the link:
https://photos.app.goo.gl/Eo5BY2ixFf9h5xLd6
It will surely be a key memory of her childhood.
Meanwhile, we continue to have our daily reading time with the two little ones, and are doing our best to keep our spirits up. We’ve thought quite a bit about how fortunate we are that we enjoy being together. I cannot imagine how much more difficult this must be for people who are alone or in troubled relationships. And it looks like we will be at this for quite some time.
On Wednesday evening, singer-songwriter David Roth gave an on-line concert from his home on Cape Cod, which we thoroughly enjoyed. Over 500 people tuned in (many presumably with more than one person listening), and he sang one song from each of his dozen or so albums. It was really terrific and we’re all hoping he will do it again soon.
These times call for all of us to
assess our priorities. We are doing all we can to stay in touch with our
grandchildren, and have even started a daily story-time, reading the two
youngest books that we share on our Kindles, and chatting and texting with the
older ones. But something we really miss is pizza.
So, we decided to try this ourselves.
It has been many years since I worked with yeast dough, but I guess it is a bit
like riding a bicycle, you never really forget how. We may have left it in the
oven a tad too long, but I have to say it really did come out quite well,
particularly since we no longer have access to the “professionals” with their
equipment and secret formulas.
Being uncertain how it would work out, we did not buy a lot of yeast, and now all the on-line sources seem to be cleaned out. So, after Passover we will need to start the search if we want to keep doing this! I want to hope that life will return to something closer to normal before we use up the yeast.
Meanwhile, as a break from the constant news on COVID-19, we watched a few movies from the 1980s and 90s. I am sure you have all seen these, but they really are enjoyable enough to watch again.
And the one show that thankfully seems to continue to be aired every day is Jeopardy!
Lastly, an uplifting message from Rabbi Avi Weiss.
Just do everything you can to keep you and your family healthy!
This is not about Hillary Rodham
Clinton’s book published in 2014. I suppose it is about a much more mundane
matter, but one with which I am sure many people are struggling in these challenging
times.
I was scheduled to go to MSKCC for
another pembrolizumab treatment on March 25th. The original trials
of pembro in bladder cancer were two years, and there has not been any
published data on longer-term therapy. Since I had a very rapid response to the
drug two years ago, and have had no signs of return of the cancer, Dr. Iyer
felt it was time to stop the therapy. I
wrote about this back in mid-January. At the time, Barry consulted with a
number of colleagues who suggested a sort of compromise, to go to six weeks
cycles and “ease off” the treatment. March 25th would have been six
weeks from my last treatment (#33) on February 12th.
But now the equation has changed. Does
the potential benefit of continuing treatment at this time outweigh the risk of
my spending the better part of a day at MSKCC in close proximity to individuals
who may be infected with COVID-19? Barry helped me to compose an e-mail to Dr.
Iyer with precisely this question, and he responded at lightning speed, writing
I was actually just
about to e-mail the both of you regarding the below. As you have very nicely
described, the risk of coming in for treatment and potentially being exposed to
COVID-19 outweighs the risk for a recurrence of the cancer, especially as we
are at a point where the treatments are being spaced out. Given the DIPNECH*,
there is a higher risk for significant complications if you do contract the
virus, so my recommendation at this time would be to cancel the March treatment
and plan to treat again in May when, hopefully, this situation is under better
control.
We are currently
calling all of our patients who could have their treatment delayed to advise
them as above.
I would also advise
that both of you follow the CDC guidelines on frequent hand washing and social
distancing for the immediate future.
*DIPNECH
stands for Diffuse Idiopathic Pulmonary Neuroendocrine Cell Hyperplasia
So, the decision is made. Odd as this
may sound, I in fact feel quite fortunate that this has happened after I
completed the two years of therapy. It would have been a much more difficult decision
had we been confronted with it a year ago.
Having said that, it is quite
incredible how many people have remained in denial, and the crowds at Disney
World and on the Florida beaches this weekend, on the eve of plans to close these
areas, prove that.
So, I really am hunkered down here for a while. As Passover is quickly approaching, thanks to all of our friends who have offered to shop for us, with a special shout-out to our friend Lanny who picked up a few items for us in Monsey today that have not yet appeared at the local grocery store.
Our grandchildren are all out of school now through Passover. Difficult as this is, I believe that the correct decisions have been made all around.
We are hunkering down and watching some old movies. We watched the 2009 film “Julie and Julia,” based on the true story of a young woman who cooked and blogged her way through the entire 524 recipes in Julia Child’s cookbook, “Mastering the Art of French Cooking.” Amy Adams plays Julie with Meryl Streep as Julia child. We had seen this when it first came out but it is really a charming film and worth watching again as a great relief to the distressing news.
We’ve hunkered down
for the time being, and with the news being so grim and frightening, we got to
thinking about distractions. What better distraction is there than watching
movies?
Earlier this week,
the actor Peter Sarsgaard was a guest on The Late Show. We have not been
keeping up with his work in recent years, and at 49 years old he was barely recognizable,
with his thinner face and bald head. But the voice was familiar from the 2003
film, Shattered Glass. We really remember enjoying this movie 17 years
ago, so we decided to watch it. The following is excerpted from Wikipedia,
where I learned that Peter Sarsgaard and I share a birthday (19 years apart):
2003
marked a significant turning point in Sarsgaard's career, when he starred in
the feature film Shattered Glass. He depicted journalistCharles Lane, the lead editor of The New Republic. Shattered
Glass is based on the real events of journalist Stephen Glass'
career at The New Republic during the mid-1990s and his fall when his
widespread journalistic fraud is exposed… According to the San Diego Union-Tribune, "Peter
Sarsgaard is appealingly level, a stolid straight-shooter as Lane".[34] A
reviewer from the Chicago Tribune noted that Sarsgaard plays
Lane with "great subtlety and grace".[35] The
newspaper concluded with, "The character doesn't seethe with personal
resentment; when he does a slow burn, he conveys a much deeper sense of a man's
value system being violated past the breaking point."[35] Sarsgaard's
performance in the film earned him his first Golden Globe Award nomination and an Independent Spirit Award nomination.[36]
34.Elliot, David (November 13,
2003). "Credibility Gap 'Shattered Glass' chronicles a media fraud who
shattered all around him". The San Diego Union-Tribune.
Rotten Tomatoes had
given the film a 91%. It was every bit as enjoyable now as it was all those
years ago, and I highly recommend it as a great distraction in these trying
times.
We were supposed to have gone to a taping of The Late Show last evening. Those tickets are not easy to come by, and we were thrilled a couple of weeks ago to discover that we had in fact landed two of them. But, needless to say, a few days ago we decided not to go and sent a cancellation. From past experience, we know that they have a substantial “wait list,” because we have been on that list many times. We watched last night’s show early this morning, and, in one of those small world stories, the main guest was Hank Azaria, who played Michael Kelly, The New Republic editor, in the movie Shattered Glass. This was just a coincidence, I suppose, but still an amusing side note. Stay well!
Love,
Rebecca
p.s. They announced on The Late Show that this Friday will
be their last performance in front of a live audience for the undetermined
future. So, I suspect when things get better, it will take another few years
for us to land those tickets!
Today is the Jewish holiday of Purim.
It would have been nice to spend it with our children and grandchildren but we
had not planned on it because of Barry’s weekly class early tomorrow morning. Even
if we had planned to go, we would have been forced to cancel because, having
consulted with my pulmonologist, we are essentially self-quarantined at this point.
With orders to quarantine announced today for a two-mile radius in New
Rochelle, not far from here, we fully expect a widespread lockdown to come
soon.
To say I am frightened would be a gross
understatement. So, it was tremendously uplifting to see these fantastic
pictures of our grandchildren in their Purim costumes, and to receive
the lovely tulips they had delivered to us to brighten our day.
This song is to the tune of
“Take Me Out to the Ball Game”,
even though Eliana’s in a football shirt.
Simmie says it works because,
“Football’s still a type of ball game, right??”
Many thanks to Rebecca Rosenstein (Nana)
for her assistance with the lyrics to this parody.
All baked goods are dairy. Hot dogs
are better that way!
Take
me to hear the Megillah,
Take
me to hear Groggers roar.
Bring
me some pretzels and mustard, please
You
can even eat that dairy “hot dog” with cheese!
