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.
28 February 2013
27 February 2013
Memories
Time
seems to be passing quickly: the end of February is a day away, and I am hoping
the end of snow will not be too far behind. We have certainly had enough
already this winter.
We
had a nice weekend up in Sharon. We had Sabbath lunch with Simmie and family at
their house, and when Sabbath was over we all headed to synagogue to celebrate
Purim, a festive holiday that commemorates the deliverance of the Jewish people
in the ancient Persian Empire from destruction in the wake of
a plot by Haman, a story recorded in the Biblical Book of
Esther (Megillat Esther). It is customary for children
(and some adults enjoy doing this as well) to dress in costume, and our
grandchildren all enjoy this. Joshua had a big banana costume (I did not slip
on him). Ella and Eliana dressed to match their American Girl Dolls. Eliana matched
her gymnast doll, McKenna, and Ella dressed to match her 60’s doll, Julie,
including a pair of hip-hugger bell bottom jeans (amazing, that’s what they are
selling for little girls these days) and a crocheted hat her Mom made, and I
have to say it was amazing how well she pulled it off and looked like a
miniature version of a very cool girl from the 60’s. Maya dressed as the White
Rabbit from Alice in Wonderland. In all the hoopla I did not manage to get any
good pictures, so I have to see if Dina and Aaron and Simmie and Ronen might
have some I can post. In the evening and again in the morning, the Purim story
is read from the Book of Esther (Megillat
Esther), with appropriate sound effects (cheers and jeers) from the
congregants. It is traditional to exchange gifts of food with friends, and of
course no Jewish holiday is complete without a festive meal. The ten of us
gathered at Dina’s house for a meal that all three families prepared. Barry and
I made an old family favorite called Baked Pasta with Cauliflower and Cheese
from the old (literally, our copy is falling apart) cookbook, New Recipes from
the Moosewood Restaurant. It is an upscale version of macaroni and cheese, with
lots of vegetables (sautéed onions, cauliflower, and tomatoes) and Italian
seasoning. Simmie made a yummy vegetable stew (also from one of the old Moosewood
cookbooks), Dina provided salad and bread, and we raided all the Purim goodies
we had received throughout the day for dessert. A fun time was had by all.
On
Monday morning we headed back to New York and settled back into the house.
After we unpacked, I sat down to watch two DVDs from March of 2012. Last year,
Purim fell on March 8th, the day after my 60th birthday,
and Barry and our daughters and sons-in-law planned and threw a big party for
me up in Sharon. I have to admit that my memory of that evening is a bit fuzzy
at best. The first DVD is a photo montage they had put together to two songs
that I had often sung to Simmie and Dina: Carole King’s Child of Mine, and Rod
Stewart’s Forever Young, with a bit of David Roth’s If You Can’t Fly in the
middle. The second DVD has footage from the 60th birthday party. I
had never seen the video of the party, but I felt that now that I have reached
the one year mark it was time to watch. It was pretty emotional, and somewhat
disconcerting to recognize how little I remembered of the photo montage or of
the wonderful evening which they all worked so hard to plan. Watching the
video, you might not even realize anything was particularly wrong. But I knew
something was, I just had no idea it would be anything quite like what turned
out to be.
Yesterday
I had my music class in the afternoon; I was glad to be able to get back to
that after missing the week before. We studied Mozart’s Symphony #31 in D
Major, sometimes called his “Paris Symphony” because it was written during a
period when he was living in, you guessed it, Paris. Then Barry took me to a
nearby restaurant where I met two Pfizer colleagues for dinner. This was the
first time I have gone out with anyone other than Barry or our daughters in
over a year. It was really wonderful to see them, share family updates, and
hear a bit about how things are going at my old stomping grounds. While I knew
both of them had been reading the blog, I was amazed at how much they actually
remembered all these silly details of my life. I barely remember all the stuff
I have written here, so I hardly expect anyone else to! Every now and then I
sit and read some of the old postings and I am always a bit surprised by them,
a very strange feeling. It’s not that I have forgotten the events themselves,
although the details are often somewhat fuzzy, it’s that I don’t seem to
remember that I wrote about some things. So again and again I would start to
explain something, and one of them would say “Oh, yes, you wrote about that on
the blog.” It was quite flattering and heartwarming to realize that my friends
are devoting this sort of energy to following my journey. I hope that as I
regain strength I will be able to do this more often. For now, like all of my
activities, it still requires a lot of help from Barry. I continue to hope that
I will regain the ability to venture out more on my own. This was an excellent
start, and I am truly grateful beyond words for them taking the time from their
busy schedules to come to the Upper East Side to meet me for dinner.
Tomorrow
I have my therapy session; I’ve been working hard at Lumosity and today I
finally broke through to the next level of Playing Koi! I was shocked – I had
been on the same level for weeks. So I tried one game at the next level, and I
can see already that I may be there for even longer. There are more fish, more
distractors (plants, turtles, and such) and they are all moving more rapidly.
Oh dear. The film tomorrow is Blazing Saddles. I don’t think I have ever
actually seen the entire movie, so this should be good.
My next
appointment for repeat scans and Lisa DeAngelis is next Tuesday. I will
certainly post an update after that!
Meanwhile,
please do continue to keep in touch, and thank you all so much for continuing
to read, which encourages me to continue to write. And that, I believe, is a
good thing for me.
Love,
Rebecca
20 February 2013
Not a smart move
I had a
big day planned for Tuesday: meet with Heidi at 11, have lunch with Barry, then
go to my music class at the 92nd Street Y. But before all that, I
planned to go to morning services at synagogue because Tuesday was the
anniversary of my father’s passing, and there is a traditional prayer said on
that day, the same one that is said daily for the year after a parent dies. It
was a great plan but it didn’t quite happen. I got up, showered, and dressed
and headed downstairs with some laundry and other things in my hands, and
promptly managed to slip and fall down a few of the hardwood steps, landing on
my derriere. Definitely not a good move. Barry came running and I was fortunately
able to get up and walk. I communicated with my doctor (via e-mail) who
suggested that I take some Tylenol or Advil and see how it was going after 24
hours. By later in the afternoon I was feeling better and was able to attend
the evening synagogue services. I’m glad to say that it is about 36 hours later
as I write this, and although I’m still definitely sore, I think I’ll be okay.
Mostly I
am just feeling quite stupid. How did I let that happen? The last time I fell
over my own two feet, I was able to blame the chemotherapy. But months after
the last dose? Maybe I was distracted. I have continued to have trouble
reading, and I had “practiced” saying the mourners’ prayer (it is in Hebrew, and
my skills are rudimentary at best) a couple of times in the hopes that I wouldn’t
trip over it (so to speak) too badly. The practice didn’t go too well, and
perhaps that was sufficient distraction. And poor Barry was just beside
himself, back to feeling he still has to watch my every move.
Barry
taught his class early this morning and then came home, where I’ve been all day.
Dina and Aaron and the children were driving back to Sharon from a few days in
Philadelphia, and stopped to have lunch with us, always a treat.
Over the
past couple of weeks, we’ve spent time compiling information to send to our
accountant for our 2012 tax returns and getting some other matters in order,
and I have continued to do some clean-up of our home office. Yesterday I came
across piles of pictures taken in various locations, but most were not dated
and I was unable to recall exactly when we took some of those trips. So I
organized them the best that I could. By the time I finally finish cleaning up
our home office it will be time to start the next round of clean-up. But
hopefully I won’t let it go for another 15-20 years this time!
Please
everyone do everything you can to stay safe!
Love,
Rebecca
16 February 2013
JUDY COLLINS - "The Blizzard" 1990
Dear Friends,
I've found myself humming this song all week, and as I watch the snow falling yet again, I just wanted to share it here. So fix yourself a cup of hot cocoa and sit back and enjoy.....
Love,,
Rebecca
13 February 2013
We weathered the storm….
I am happy to report to those of you who have reached out over the days before last week’s storm, and to those of you who might have thought to reach out but were unable to do so, that we weathered Nemo just fine. There is a lot of snow up there!!! Sharon is a small town so we don’t get specific mention on the news, but in the general area south of Boston they seemed to be consistently saying that at least 2½ feet of snow fell. The barrage ended precisely when they said it would late Saturday morning, and at about 3:30 pm we heard a knock on our door and were surprised to find Simmie, Ronen, Eliana, and Maya standing there, all bundled up with red cheeks! We quickly made hot cocoa for everyone. None of us had lost power, and once the plow came through they decided to see if they could walk. The biggest challenge was getting down their driveway, where the drifts were higher than Maya is tall. When Sabbath ended, Barry and Ronen scraped off our car, and Barry drove Simmie and Ronen home and picked up pajamas for the girls so they could have a sleepover while their parents dug out the cars and cleared the driveway.
This was the first sleepover we had since before my diagnosis; I can’t remember precisely when the last one was but it must have been around a year ago. We had a great time. When Sabbath ended we made – what else? – macaroni and cheese. Every time we come to Sharon, we cook a pound of pasta and put it in a plastic bag to be portioned out as needed and heated with an outrageous amount of American cheese and a little milk and butter for quick mac’n’cheese. Maya told me that Barry makes it better because he uses more cheese than I do! Then we read some books and the girls took a bath and by the time they were ready for bed they pretty much conked out before we could get out the bedroom door. They slept until almost 7 am. We made pancakes for breakfast, played Lumosity, and before we knew it the girls had to leave because Maya had been invited to a birthday party. We had a quiet afternoon resting up for the annual dinner for the local Jewish day school on Sunday evening. Our son-in-law Aaron was one of the honorees in recognition for all the volunteer computer tech support he provides for the school faculty and staff. Also being honored was Nina, a teacher in the school whose husband is the son of the first friends we made after moving to Sharon in 1986. Dina and another Sharon friend put together and filmed a hilarious skit about Aaron and Nina which was shown. It was a really touching evening.
Monday turned out to be a long and complicated day. The six of us (sans les enfants) had been invited to a wedding in New York. The bride has been a close friend of Simmie’s for over 20 years. She has spent many Sabbaths and holidays with us over the years, and we were quite honored that she chose to include us in this wonderful event. For logistical reasons, only Simmie, Dina, Barry, and I were planning to go. But sometimes the best laid plans can go awry. Simmie was a bridesmaid so she left early Monday morning to spend the day helping her friend. Barry, Dina, and I were to follow a few hours later after Dina attended some meetings at school. But at about 9 we received a call from Simmie telling us she had an accident just past the Connecticut border. The good news is that she was not hurt, but she could not drive the car, and was waiting for a tow truck. We had been hearing that the roads were very slick and it was true. So we decided to leave at that point, with the plan that Dina would drive down later. The weather was awful and the drive was stressful, and we convinced Dina to stay put in Sharon, disappointing as that was. We got Simmie to the wedding location only about an hour before the festivities began, enough to share a little time with her friend and be in the pictures with the other attendants, but clearly much less than she had in mind. Barry and I were just exhausted and could not stay long, since we still had the drive back to Riverdale. We were just so glad to be there and to see Simmie’s friend looking so beautiful and so happy. Simmie arranged to catch a ride into the City and took a taxi from there to Riverdale; she did not come in until about 1 am (oh, to be young!).
Tuesday was a busy day, with my therapy and then my music class (for which I miraculously managed to stay awake): an interesting discussion of Mozart’s life and his 26th symphony.
Before I close, I want to share just one more vignette from my life, striving to the best of my ability to preserve the privacy of the other party. During the months of my illness, there has been one friend in particular who has been noticeably absent from our lives. We knew that this friend was aware of the situation, but not once had this person reached out to us, and it was a source of a good deal of hurt and disappointment. We saw the friend at a recent event we attended. We knew the friend would likely be there and we were prepared not to speak even if spoken to because we did not care to risk expressing our pain and making a scene. Our “snub” was certainly understood, and we arrived home to a tear-filled voice mail message. I returned the call and we spoke, and I feel very grateful that we are on the way to mending the rift.
We have known many people over the years to run like the wind when confronted with such painful circumstances. Often their explanation is “I did not know what to say.” Well, there are no magic words, but just “I am thinking about you” can go an amazingly long way. I know I am preaching to the proverbial choir here, because if you are reading this it is because you have been able to show us that you care. And I want each of you who have reached out, whether it was with one line or a pound of chocolates, to know that it has truly meant the world to us, and taught us yet again the importance of seizing those moments to perhaps bring a bit of light into someone’s life.
Speaking of which, time to get back to Lumosity!
Love,
Rebecca
07 February 2013
The calm before the storm
We are here in our Sharon apartment, with enough food to feed the entire community, waiting for the arrival of the storm that the news reports are calling “Nemo.”
For as long as I can remember, names were given to hurricanes. But you might be wondering, as we were, when they started giving names to winter storms. And through the wonders of the internet, I was quickly able to learn about this.
The Weather Channel page (www.weather.com) explains
During the upcoming 2012-13 winter season The
Weather Channel will name noteworthy winter storms. Our goal is to better
communicate the threat and the timing of the significant impacts that accompany
these events. The fact is, a storm with a name is easier to follow, which will
mean fewer surprises and more preparation.
It goes on to say
Naming
Winter Storms
Hurricanes and tropical storms have been given
names since the 1940s. In the late 1800s, tropical systems near Australia were
named as well. Weather systems, including winter storms, have been named in
Europe since the 1950s. Important dividends have resulted from attaching names
to these storms:
· Naming a storm raises
awareness.
· Attaching a name makes
it much easier to follow a weather system’s progress.
· A storm with a name
takes on a personality all its own, which adds to awareness.
· In today’s social
media world, a name makes it much easier to reference in communication.
· A named storm is
easier to remember and refer to in the future.
You can find the entire piece at
http://www.weather.com/news/why-we-name-winter-storms-20121001
They also provide information on each name, noting that
Nemo is a Greek boy’s name
meaning "from the valley," means "nobody" in Latin.
I don’t think this storm is coming from a valley, and I can certainly say that no one is treating Nemo as a “nobody.” He is very much somebody who is making his presence felt in no uncertain terms!
This whole thing is rather scary. I have charged all my portable oxygen equipment, and have my large emergency tank handy. Our apartment is going to get very cold very quickly if we should lose power. But we have not lost our sense of humor, and we had to chuckle when we heard Boston Mayor Menino at a press conference talk about declaring a “pocking emergency.” What is a “pocking emergency?” asked one of the reporters, evidently not a native of Boston, where you “pock” your “cah.” When we first moved to Sharon in 1986, I was so impressed how even the local newscasters sounded like the Kennedys!
Love,
Rebecca
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