A quick update

Here we are at the end of another month. A couple of days ago marked the one year anniversary of my first MRI. And now we have come full circle on the Jewish calendar, back to Passover. We were together again as a whole family, and as the children are growing older they participate more and more, which is an enormous joy.

Barry and I also managed to carve out some time with just the children at our apartment. On Thursday, Eliana and Maya watched the movie ET at our apartment. They had never seen it, and they LOVED it – the minute it ended, Eliana wanted to start it again! Then Maya went off on a playdate while Eliana stayed with us; we played games and she drew pictures to take to her other grandparents and cousins, with whom their family spent Sabbath in New York. Joshua and Ella came over for Sabbath afternoon, and we built some new Lego sets we had bought them. The company has gotten very clever – they are now marketing sets specifically targeted to girls, and this was a big hit with Ella. Here’s the one Barry bought for her:

http://shop.lego.com/en-US/Rehearsal-Stage-41004

I really did not think it would hold her interest for all that long but she loved it and kept going until it was completely built, with very little help from us. After that, we headed back over to their house and they played in the yard with some friends who live around the corner while we sat outside and enjoyed the relatively warm weather.

This morning we are preparing for the last days of the holiday. This evening, we are all having dinner together at Dina and Aaron’s house – the first meal we’ve had with just the ten of us (there were others who joined us for the first days). Tuesday night we will repack all the Passover dishes, and on Wednesday we will head back to New York. We will be staying there next weekend.

I hope all of you are enjoying your holiday in good health!

Love,

Rebecca

Passover preparations

Last Thursday was a busy day. While Barry was in a meeting early that morning, I drank hot chocolate and worked the New York Times Crossword puzzle (unusually easy for a Thursday puzzle) at the lobby café in the newest building on the Mount Sinai campus. At 11 I met with my neuropsychologist, which is always enjoyable even if challenging. Then Barry dropped me off at the JCC for my two classes. It was the final session of the film course, and we watched “The Out of Towners.” I had seen this movie some years ago but only faintly remembered any details beyond the broad brushstrokes of the story line: a couple (played by Jack Lemmon and Sandy Dennis) comes to New York City from their Midwestern home town for a promising job interview. Pretty much everything that can go wrong does go wrong, from lost luggage, a delayed flight, a transit strike, a dropped hotel reservations, two muggings….need I go in? I knew as I was watching it that this movie was supposed to be a comedy, but I found it excruciatingly painful to watch. First of all, it represents a very bleak time in the history of New York City, a period which is best forgotten. But more important is something I have considered often during this last year: with all the natural disasters and frightful things that are beyond our control, why do we humans persist in causing ourselves and each other so much misery?  It was all I could do not to walk out of the screening, I truly found it that disturbing. But I am glad I stayed, not because it got any better, but because there was at least one of the other women in the class had precisely the same reaction that I did, and that was quite reassuring. The two of us ended up dominating the conversation! I do not want to believe that I am permanently seeing the world through gray tinted glasses. But this film really was upsetting, and I am just very happy that New York City is a far kinder and gentler place than it was back in the late 1960s.

I am so glad that I had my writing class after this movie, because it helped quickly snap me out of the blue funk. We started the class with an assignment, to write “six word memoirs.” Here are a few I wrote:

Math comes easily, writing less so
Love to sing, consider yourself warned
Losing weight healthy, except with cancer
Friday Times crossword far too difficult

Try it – it’s fun! We also wrote about our names, and it was fascinating to hear what the others had to say. I am hoping to work more on that and will share it here when it is in better shape. All in all, the class was an excellent antidote to a very dark film.

Barry and I have been listening to a book that Heidi recommended called “My Stroke of Insight,” by Dr. Jill Bolte Taylor. When Dr. Taylor was in her mid thirties, an accomplished brain scientist, she suffered a massive stroke. You can watch an abbreviated version in a talk she presented a few years ago at a Ted conference:

http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

Quite a bit of what she says resonates for me, although I cannot claim to have shared even a small twinkling of the insights she experienced. Of course the book was written some years after the stroke, and I suspect that there is some embellishment of the story over time.

We are in the final countdown to Passover. We drove up to Sharon first thing Sunday morning. We had every good intention to sleep a little later in order to “time adjust” for the two late nights ahead, but of course we woke up before the crack of dawn, finished our packing, loaded the cars, and were on our way by about 6 am. Sunday was a busy day here. First, there was unloading the cars, putting away all the clothes and groceries, and after that I spent most of the day baking for Passover. I started with a lemon sponge cake, which is Barry’s favorite. Then I moved on to an old favorite, Passover Toll House cookies, a concoction of matza farvel (tiny pieces of matza), matza meal (essentially ground up matza, sort of the equivalent of bread crumbs), eggs, oil, and chocolate chips. Meanwhile, Barry worked on sautéing vegetables for the Passover pizza we are making on the second day (Simmie’s birthday; we have that lunch on the second day every year). The pizza “crust” is a concoction of matza farfel, eggs, and milk, baked until set and then topped with whatever you like. I suspect that if I ate these foods at any other time of year they would seem quite awful. But the amazing thing about Passover is that even things that sound like they would be quite distasteful are fabulous. And having missed all of them last year, I suspect they will taste especially sweet during the coming days.

The rest of the cooking awaits, so this is a good time to close. Whatever holiday you are celebrating during the next week, I hope you enjoy it in good health, surrounded by the warmth of family and friends.

Love,

Rebecca

Preparations

It has been a very busy week. Although I must apologize for the long gap between the last post and this one, at least it was for good reasons.

Last Wednesday, we took a break and headed back to the New York Botanical Gardens to see the annual Orchid Show. This is an exhibit that has been staged for many years (12, I believe) but, like so many others, one we had never seen. The show was entirely indoors, in the same space that was used for the indoor part of the Monet exhibit as well as the more extensive space that houses the annual Holiday Train Show. It was quite magnificent, and we took many pictures, some of which I have posted onto a page I created on Shutterfly:

http://stayingonthebridgeofflowers.shutterfly.com

(if you click on this link, it will ask you to set up an account, or log into an account if you already have one). Please feel free to enjoy the pictures! The last of the 39 pictures is especially stunning – the colors are so vibrant that it almost does not look real; I used that for my “home page” on Shutterfly.

On Wednesday evening we headed into the City to see The Allman Brothers Band for one of their annual March performances at The Beacon Theater. Many of you who know us and know the ABB are probably scratching your heads, but we have long enjoyed their music and their shows, although we are not quite the usual demographic: very tall males, often with long hair. We had to miss a few years because even after New York passed a law banning smoking in public places, the ABB shows at the Beacon took a long time to follow the rules (and we are not just talking about cigarettes). But after some years of these laws, people have gotten used to it and the shows have become nearly smoke-free. We had tickets for one of the nights last year but I was not up to going, so it was a real milestone just to be there. They always start late (it was nearly 9 pm, long after our bedtime), and we thought about leaving during the (lengthy) intermission. But we stayed on, and were very happy that we did because they ended with Jessica, an Allman Brothers classic. I found a video of it from this year’s Beacon series at:

http://youtu.be/T_tbc8D_yfQ

The ABB usually does 10-12 shows at The Beacon every spring. We chose the Wednesday night show because Barry does not have to be in super early on Thursday morning. Nonetheless, Thursday turned out to be a busy day. I had my film class at 1 pm. We watched The Odd Couple, but unfortunately the class started late and I missed the discussion because I wanted to be on time for my first Memoir Writing class. As I told Barry after the class, this one, I think, is going to be a winner. Although I am, again, the youngest in the group by at least 10-15 years, they were a very friendly bunch of 17 or so (including two men). We spent the first half hour going around and telling how we came to be sitting there. All of you who are reading this know me, so you know that I can never tell a short story, but I did my best not to spend the entire hour and a half on my saga. Our first assignment was to write “Where I’m From.” We had about 15 minutes to scribble our thoughts and then went around the room reading what we had written. As I have mentioned previously, I am still struggling with reading, even with something I have just written, but I managed to stumble through what I had written. Before you ask, it is definitely not ready for prime time, so I do not plan to include it here at this point! What was fascinating was how each person interpreted the assignment differently. Some wrote long paragraphs, others poems, some struggled to say more than a few words while others wrote multiple pages in 15 minutes. The ninety minutes went by very quickly.

We headed back up to Sharon after Barry taught his class on Friday morning. We had a quiet dinner on Friday evening, and Joshua and Ella came over for lunch and an afternoon of games and fun on Saturday after synagogue. Saturday evening when Sabbath ended we began the work of cleaning up the apartment in preparation for Passover. We started with the refrigerator and a few cabinets in the kitchen that we cleared to make way for the Passover items. Sunday morning we headed to the grocery store to begin stocking the kitchen. Then at 10, our two first graders, Eliana and Gabriella, participated in a wonderful ceremony at school during which they officially received their first prayer books. The entire program was done in Hebrew, so I cannot say I understood every word, but the engagement of all of the children was quite impressive. One highlight was that each of the children had been given a chance to share something for which they were thankful. Eliana had told me about this but I did not quite realize that it would be done “on stage,” so to speak. Most of the children were thankful for typical things you would expect: loving parents and siblings, a caring teacher, a fun trip they had taken. But Eliana went in an entirely different direction, and said “Hashem oseh sh'Savta tehiyeh brei'ah," "Gd will make it that my grandmother will be healthy.” There were a few audible gasps when she said this and a number of people came up to me afterwards. Eliana is not necessarily the kind of child you would expect to do this, which makes it all the more moving that this was what she wanted to say. It was a powerful moment.

Then, back to planet earth…we returned to finish the clean-up of our apartment, and actually accomplished more than I expected, which will help alleviate the anxiety this holiday and its extensive preparations can sometimes cause. Perhaps my awareness of this anxiety is a good sign of my continuing recovery. Simmie and Ronen had invited us to join their family for dinner, and the delicious pot of split pea soup with fresh bread really hit the spot. Maya had taken a short nap so was in an especially lively mood which kept us all in stitches.

We packed up Monday morning and headed back to New York, where we are now settling back in. We will be here through Sabbath and will return to Sharon first thing Sunday, where we will be for the entire week of Passover.

On the drive back to New York we started listening to an audio book written by Jill Bolte Taylor, Ph.D., titled My Stroke of Insight: A Brain Scientist's Personal Journey that Heidi Bender, the neuropsychologist with whom I have been working, had recommended to us.  

On December 10, 1996, Jill Bolte Taylor, a thirty-seven- year-old Harvard-trained brain scientist experienced a massive stroke in the left hemisphere of her brain. As she observed her mind deteriorate to the point that she could not walk, talk, read, write, or recall any of her life-all within four hours-Taylor alternated between the euphoria of the intuitive and kinesthetic right brain, in which she felt a sense of complete well-being and peace, and the logical, sequential left brain, which recognized she was having a stroke and enabled her to seek help before she was completely lost. It would take her eight years to fully recover.

For Taylor, her stroke was a blessing and a revelation. It taught her that by "stepping to the right" of our left brains, we can uncover feelings of well-being that are often sidelined by "brain chatter." Reaching wide audiences through her talk at the Technology, Entertainment, Design (TED) conference and her appearance on Oprah's online Soul Series, Taylor provides a valuable recovery guide for those touched by brain injury and an inspiring testimony that inner peace is accessible to anyone.

During the drive to New York, we listened through the first few chapters, including her amazingly detailed description of the first hours following the onset of symptoms. Her ability to articulate her thoughts and feelings during the seemingly sudden burst of bizarre symptoms is quite impressive.

There are some who view the preparations for Passover as a way of cleaning not only our homes but our selves. The leaven, the bread that has risen, can be seen as symbolic of our egos, which tend to easily inflate. So we can think of this process as helping to keep ourselves in check. My cancer was diagnosed in the days just before Passover last year, and this connection has not been lost on me. While I look forward to continuing to restore my cognitive abilities, I also fervently hope that I will not lose the humility I have gained and the love I have felt for all of you who have so patiently walked alongside me during a very challenging time.

Love,

Rebecca

One more thing:

We were busy this morning when the CBS program “The Doctors” aired. We had seen the promos that today’s entire hour was devoted to the actress Valerie Harper, who was recently diagnosed with an incurable brain cancer. So this afternoon I searched around to find the interview, and was able to find pieces of it at

http://www.thedoctorstv.com/videolib/init/8785

Take a look: Ms. Harper was diagnosed when she was working in New York City, and she was quickly sent to none other than Dr. Lisa DeAngelis! Ms. Harper’s description of her discussion with Dr. DeAngelis sounded exactly like the Dr. DeAngelis we know and love – smart, sensible, caring. They made the decision to return to their home in Los Angeles, where she is being treated at Cedars-Sinai Medical Center, so we will not have the opportunity to meet her at MSKCC.

Lost an hour but gained so much more

We had a very special weekend. First, a little background is in order. Barry (class of 1973) and I (class of 1974) did our undergraduate work at the University of Rochester. Barry earned his Ph.D. from the U of R in 1978, and was a postdoctoral fellow at Brookhaven National Laboratory on Long Island from 1978-1980. In the summer of 1980 he was offered a position at the University of Texas Health Science Center in Dallas. So we put on our cowboy hats and headed southwest. About a year after we moved there, a new family relocated to Dallas and became part of the small traditional Jewish community. They had two children at the time, a little boy who was Simmie’s age, and a daughter 5 years older. Simmie and their little guy became good friends, and although their daughter was quite a bit older than our daughters, she and they loved spending time together. Our two families were often together on Sabbath and holidays. But eventually work took us in different directions: they settled in Denver, where they eventually had three more children, and we moved to Massachusetts and later New York. But we have never been out of touch, even in the days of snail mail and expensive long distance phone calls. Over the past 20 years we have grown very close with the oldest daughter. She came to New York City for college and stayed for a number of years after graduating, and frequently spent Sabbaths and holidays with us during those years. She moved to Florida 14 years ago and now has three children. We have managed to remain close, with less expensive phone calls and the internet helping a great deal. And we spent time with her when she and her children met us at Disney World for a few days in 2011.

Her marriage ended in divorce a few years ago, but for nearly two years she has had a new beau in her life. With the distance between us we had never met him. Over this past year she has called, written, sent us gifts, been the real sweetheart that she is. She runs her own business (check it out at www.babyktan.com) and has joint custody of the children, so finding time for personal travel is a challenge. But she was determined, and some weeks ago she called us with some possible dates for a trip to New York, which happened this weekend. Her new beau came along with her while all the children (hers and his) stayed with their other parents.

What a wonderful weekend it was! I am still amazed that they spent the time (a scarce commodity) just to come visit us. It was wonderful to see her and to meet and get to know him. We did what we always enjoyed doing – spent a lot of time sitting around the table eating and talking, and went into the City and heard some live music Saturday night. Something I had not really noticed until I started writing this is that both of their names begin with the letter M. So all I can say is “thank you, M&M – we love you.” It seems so appropriate that two such sweet people should have such a “sweet” name as a couple!

Today is a quiet day at home. We have some refurbished window treatments being installed today. I learned that these are called cornices (http://en.wikipedia.org/wiki/Cornice). We had them made when we first moved in to this house, along with a matching bedspread. The whole ensemble had faded terribly over the years, and we had long since replaced the bedspread but were still looking at the very sad cornices. So this had been on my list of projects for some time, and I finally got it done, but not in the way I would have expected. It started with wanting to replace our quilt cover, which was also rather old and sad. I found something in a catalogue (the same one that had the Monet bedding I wrote about some months ago) that I really liked – flowers, birds, and butterflies in vibrant colors on a deep red background, not at all what I would have ever imagined buying but somehow we both agreed that it felt right at this point. When the quilt cover arrived, it dawned on me that I could order a matching sheet and use it to recover the cornices. They look terrific.

Next project: plants in the living room. We have one very large flower pot that has been empty for over a year because the plant died, and two other good sized plants that are not looking especially healthy. I am the first to admit that I do not have a green thumb! But we do like having plants around, so I accept that they just have to struggle through their lives under my care and then be replaced. As long as my children and grandchildren feel I am not quite as incompetent with them as I clearly am with house plants, I am happy.

Tomorrow I have my weekly cognitive therapy and then my music class. Wednesday evening we have tickets for the Allman Brothers Band during their annual run of shows at the Beacon Theater (we had tickets but missed the show last year so we are excited to get back to hear them again as we have done for most of the past 15 years or so). Thursday I have my film class followed by the first session of my writing class. We will be heading back to Sharon for the weekend. On Sunday Eliana and Gabriella have a program at school: the first graders receive their prayer books in a very sweet ceremony. Then Barry and I will be working on preparing our apartment for Passover, which begins two weeks from tonight. We will spend the entire holiday in Sharon.

Have a great week, all!

Love,

Rebecca

 

 

Moving forward

Today is my 61^st birthday. Sixty was a very long year, and I feel like I missed so much of it. So I’m looking forward to really living this next year!

I apologize for not posting in over a week (other than the brief medical update). So I will go back to where I left off and try to fill in some gaps.

Last weekend we had a nice visit up in Sharon. Friday night we had Ella over for dinner and a sleep-over. We went together to synagogue on Saturday morning, and then the whole family had lunch at Dina and Aaron’s house to celebrate my birthday, which is actually today. We had a very yummy dairy/vegetarian lunch followed by an ice cream cake from a wonderful ice cream parlor called JP Licks (http://www.jplicks.com/) with my two favorite flavors, mint chip and chocolate fudge. Saturday night Joshua came to our apartment for a sleep-over after Sabbath and ended up staying through lunch on Sunday, playing games and just hanging out with us. We drove back to New York first thing Monday morning.

Tuesday morning was spent at MSKCC for the MRI and visit with Dr. DeAngelis. As mentioned in my previous, brief posting, the news was good. We talked for a bit about the cognitive therapy I am doing with Heidi. I have to admit she seemed a bit skeptical, I think she just doesn’t want me to expect too much and then be disappointed. But she certainly agreed that even something that helps a little bit is a good thing. She feels we can wait a little longer until the next scan, so my next appointment has now been set up for the end of July, about 4½ months from now.

I wanted to send a note to everyone immediately after the visit, but for some reason I could not seem to access my distribution list on my Galaxy Note II (still need to figure that out). But I finally sent the short note that evening, and I was truly moved by the overwhelming response – within just a few hours there were over 40 messages in my inbox, and they continue to come. I tried to respond to each of you separately and do apologize if I may have missed some. I am still trying to get the hang of how gmail stores the messages.

On Tuesday afternoon I had my music class. We took a slight diversion from the usual focus and listened to excerpts from a recording of Bruno Walter conducting the first rehearsal of a specially selected orchestra in Mozart’s Symphony #36, The Linz Symphony. In the first twenty minutes they got through just two bars of music until he achieved what he wanted from the orchestra! I have never played in an orchestra so it was quite fascinating to have a glimpse into the process. The class itself focused on Symphony #38, The Prague Symphony.

Later that day we went to see a documentary called “Hava Nagila” that traces in a lighthearted way the history of that quintessential Jewish celebratory song and dance. Somehow the filmmakers managed to find footage of people from all over the world doing this dance to this music: from Africa, the Far East, the former Soviet Union. It was really fascinating and just the lighthearted end we needed to further help ease the stress of the previous few days of waiting for the MRI.

Now that I am taking classes at the 92^nd Street Y and the Jewish Community Center in Manhattan, I receive notices of their other upcoming activities. One caught my eye:

With Janet R. Kirchheimer
Publlished Author and Teaching Fellow at CLAL
Have you ever wanted to write your life story for yourself, your children, or your grandchildren? Then this is the workshop for you! Through a wide variety of innovative writing exercises and discussions in each class, you'll create the memoir you’ve always wanted. No experience in writing is necessary, just the desire to express yourself.

So many of you have suggested that I consider writing a book, and although I certainly appreciate the compliment I had never really seriously considered this. But then this fell into my lap via my inbox, and I signed up. The course starts in a few weeks, on the last day of my film class. I will definitely let you all know how that goes.

As I mentioned, today is my birthday, and before I can tell you about the gift that Barry gave me, I have to tell you about something that happened some months ago, while I was still actively undergoing chemotherapy. When I first came home from the hospital after the initial stay, we moved to a guest bedroom on the first floor of our house so that I would not have to walk up and down the stairs to the main living area (which my fall two weeks ago shows is still something of a challenge). Since this move was temporary we never really settled in there, and some of our things were sitting on bookshelves we had quickly emptied to make some space. One of the things sitting on a shelf was a small box containing a pair of diamond stud earrings that Barry had bought me some years ago. I usually wore those most of the time but I took them out before going to the hospital for each cycle of chemotherapy, and put them on the bookshelf along with some other items. And one day I noticed they were gone. At some point Barry convinced me that I had to stop beating myself up about them. So I never wrote about this here, and tried not to think about it too much. Well, by now you can see where this is going…..Barry bought me a new pair of diamond earrings for my birthday! And I am reminded of the words of Simmie’s first grade teacher, Mrs. Bunny (you can’t make this stuff up, really, “Bunny” was her nickname) who said “Barry is a prince of a guy.”

So I enter now into my 62^nd year with beautiful earrings, a loving family, and stable health. You can’t really ask for more.

Love,

Rebecca

Good news

A quick note with some good news: the scans looked good this morning, and I get to wait four months before my next appointment this time!

More to come, just wanted to let you all know.