Talking to myself

A souvenir t-shirt that has been popular for many years reads

My parents went to Hawaii and all I got was this lousy t-shirt.

I began thinking about this when I recently read yet another tale of fame and fortune from a (former) cancer patient. The diagnosis of any serious disease is a definite upheaval, one that leaves many patients reevaluating their life choices and charting new paths.  A good number have been inspired to publish their tales and take to the television talk-show circuit, and I have written about some of these books here: My Stroke of Insight: A Brain Scientist's Personal Journey by Jill Bolte Taylor, Ph.D., and The Silver Lining by Holly Jacobs come to mind. I have bought some of these books and started to read them (well, not exactly, in fact I either listened to recorded versions or to Barry reading out loud, since reading remains so tedious for me), but I never get very far before I begin to find them annoying.

It has been two years (yes, two years!) since my diagnosis. Why have I been unable to find the strength or sense of purpose that these authors share? How is it that they have gone to Hawaii while I have barely gotten off the couch? Before I wandered too far down this road to despair, I remembered something I wrote over a year ago, in March 2013:

Tuesday morning was spent at MSKCC for the MRI and visit with Dr. DeAngelis…We talked for a bit about the cognitive therapy I am doing… 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.

Perhaps it is all about expectations. A couple of weeks ago I quoted the lyrics of the Simon and Garfunkel song, “The Boxer”: after changes we are more or less the same. For my outlook and personality to have undergone some major transformation as a result of this disease was not necessarily expected or even desirable. If I am a bit less driven than I was as a younger and healthier person, before DIPNECH¹ and PCNSL² came into my life, it may well be due to the strength of my desire for self-preservation.

Rather than torture myself every day about the things I have not accomplished and likely will never achieve, rather than looking to other patients, whose circumstances are each uniquely theirs, to set a standard for how I judge myself or wish others to judge me, I need to believe that I still have a useful purpose for being here on this planet. Maybe I have not yet figured out just what that purpose is, but I need to believe that even the modest goals of keeping despair at bay and getting through each day without causing injury to anyone will eventually enable me to find that purpose, and maybe even to act effectively on it. As Rabbi Avi Weiss likes to say, “I am talking to myself and letting you listen.”

I remember some years ago sitting in a class during the weeks before Passover. The lecturer began talking about the significance of eating matzah, the unleavened bread. He likened the process of yeast bread rising to the inflation of our egos, and argued that eating that flat bread for a week reminds us of the importance of keeping those egos in check. The Passover narrative is about freedom from slavery. I do not have to be a slave to the attention and admiration of multitudes in order to live a satisfying and productive life. I can certainly get by with a little help from my friends.

And some warmer weather would be nice as well!

Love,

Rebecca

¹Diffuse Idiopathic Pulmonary Neuroendocrine Cell Hyperplasia

²Primary Central Nervous System Lymphoma

Too much food, not enough sleep

I had wanted to post this on Friday afternoon before the start of Sabbath. But in the middle of composing it, I had a problem with my laptop. First things first, I ran the virus detection software and it found upwards of 260 items! When I tried to remove all those items something weird happened and the list disappeared, so I started running the program again, and it was still running when Sabbath began. Fortunately, this evening we were able to successfully delete all those files, and things look okay, at least for the moment.

We have had a wonderful Passover so far. But no matter how you do it, Passover is an exhausting holiday: too much food, a good deal of energy used preparing, serving, and cleaning up that food, and not enough sleep. We took as many shortcuts as we could, using catered food and disposable dinner ware, but we are just not so young any more, plus we have both been fighting colds. So it is only as we begin to regain our energy that I can really begin to appreciate just how nice it all was.

Our Sedarim were quiet, just Dina and her family and the two of us. Joshua and Ella were active participants, and Ella was especially determined to read in Hebrew, which she did quite well. The weather during the first days continued to be cold so we were not able to spend time out of doors. But today was a beautiful day and much warmer. Although we were primarily indoors, it was nice not to feel that arctic blast the minute we walked out the door. We went to synagogue in the morning and then the whole family had lunch at Simmie and Ronen’s house. 

In the days before the holiday began, many of our inboxes were filled with various amusing bits, including parodies of the Oscar-winning song “Let it Go” from the movie Frozen. If you have not yet seen this one, take a couple of minutes to watch.

There have been quite a few videos made with the song “Happy” by Pharrell Williams; I shared one a few weeks back. Here's another you might enjoy.

A few more days of the holiday, then we put our apartment back together and head back to New York for a bit. I will check in once we are settled. Meanwhile, have a great week!

Love,

Rebecca

The Boxer

During these last few days before Passover, I am always reminded of an incident from many years ago, before we had children. I was new to traditional Jewish observance, and, being a bit of a neat freak to start with, I ran myself ragged in preparation for the holiday. So ragged, in fact, that I found myself at the Student Health Service on the eve of the holiday with horrible cracks all over my hands. I still remember the nurse reprimanding me, telling me that I need to get away from the sink or at least use gloves. I still don’t much like using gloves but I try not to do too many dishes without them.

This brought to mind a wonderful verse that Simon and Garfunkel added to their song “The Boxer.” The exact history is a bit unclear, but it seems that they began singing the song with the additional verse in live performances not long after it was originally released.

Now the years are rolling by me, 
They are rocking evenly.
I am older than I once was 
And younger than I'll be 
That's not unusual,
No it isn’t strange,
After changes upon changes 
We are more or less the same. 
After changes, we are more or less the same. 

I may have learned to wear gloves to wash all those dishes, but what I cannot seem to learn is that it is time to stop trying to do so much. With our new family member having arrived so recently, we are relying quite heavily on catered food this year. But there are just still some things I feel I have to make for Passover to seem complete, such as sponge cakes (one lemon and one chocolate) and mock chocolate chip cookies. Add to that our traditional pre-Passover family dinner for this evening: mashed potatoes and cheddar cheese, along with fresh cooked broccoli and carrots, and our traditional second day lunch, a concoction called Pesach Pizza. Two years ago I was not able to make or enjoy any of this. So, exhausted as I am, I am very glad to be here with the our family in anticipation of this wonderful holiday.

I do spend a lot of time thinking about and talking about food, don’t I?

The weather does not seem to be fully cooperating, but we can still hope that by the end of the holiday we may finally see some warmer days.

Have a wonderful week.

Love,

Rebecca

Stephen Stephen Stephen.....

The one advantage of being home and quite flexible is that I am aware of things I might have taken days to discover back when I was working.

This one speaks for itself! Hopefully the show will remain in New York, although it will be impossible to ever get tickets! 

Stephen Colbert will replace David Letterman on ‘The Late Show’

I can just hear the chanting "Stephen, Stephen, Stephen, Stephen......."!

Love,

Rebecca

Something lost, something gained

We had a wonderful Sabbath. On Friday evening we had a great meal with Dina and family prepared by a friend in the community who sent far more than they could eat. We just supplemented with some pasta for the vegetarians in the group. Another friend brought over a beautifully plated and delicious chocolate cake.

Have you ever seen the web page mealbaby.com, “meal registry made easy”? I believe this is one of many such web pages on which friends and family can sign up to prepare meals for someone who is ill or who has just given birth. The idea of traditional Jewish communities organizing such efforts on their own (including meals for families sitting shiva following the death of a loved one) is not new to me. In fact, there was a period when I was the coordinator of this activity in our Riverdale synagogue and a frequent preparer of meals. But back then there was no e-mail, no web pages, just phone calls and scribbled lists. I only recently learned that this custom of providing meals for various families at both happy and sad times goes well beyond the Jewish community. At a time when we so often bemoan the loss of community and of willingness to donate time, it is just heartwarming that this practice is very much alive and well in many places.

Our daughters are both terrific cooks and generous spirits, and often prepare meals for their friends during these major life events, so it is no surprise that there are more than 3 weeks of meals lined up and additional people are asking Dina to extend the time so they can sign up! If you add in the week of Passover meals that our family is providing (through some catering and some cooking to be done by Simmie /Ronen and Barry/me), well, let’s just say that Dina will be quite spoiled by the time little Julia is four or five weeks old.

Back to Sabbath, I had prepared lunch for the ten of us (technically 11 but Julia passed on my lunch for her much favored Mommy meal), doing a bit of cooking each day while Barry was back in New York. We had a wonderful afternoon, and on Saturday night we packed up all the leftovers and took them to our daughters so that we could spend Sunday preparing our apartment for Passover.

This preparation is a bittersweet experience for me. I have memories of two particularly difficult years, the year of Simmie’s birth and the year of my diagnosis, both of which started just before Passover and left me in the hospital for the entire holiday. So I am always very happy to be at home. At the same time, I am not as young or energetic or high functioning as I used to be, so taking on all of this feels like more of an effort than it should. That is why we decided to make extensive use of a caterer this year, since Dina is busy with the baby and Simmie and her family are going to her in-laws for the first days of the holiday.

It was perhaps fatigue that caused something that happened yesterday. As I have written previously, I lost about 25% of my weight during the period of diagnosis and treatment. My wedding ring, a simple gold band, has been very loose for well over a year, and I thought occasionally about having it resized but never did anything about it. Early in the day yesterday it actually fell off my finger and onto the floor while I was doing something. I should have just put the ring away, but I didn’t: I slipped it back on my finger. And all I know is that at some point late in the afternoon I realized it was gone. We looked all over the apartment, although I had not left the kitchen, and it was nowhere to be found. My guess is that at some point it fell into the trash can that was subsequently put it in the building’s trash collection room. That is about as gone as you can get.

This morning on our way back to New York we stopped at a mall to take a look at rings and find out my ring size. When we got home, we did a little web surfing and ordered a ring (for substantially less than the stores wanted). We even paid the extra to have it delivered by tomorrow.

I have all too often of late been feeling sorry for myself, frustrated by my continued cognitive struggles and the limitations resulting from my pulmonary disease. There is no question that both of these are keeping me from doing many things I would like to be able to do. No one feels the brunt of that frustration more than Barry. But no one else could possibly remain more calm and loving through all of it. These hours without that ring have been a stark reminder of just how lucky I am to be sharing my life with him.

While we had a wonderful time with all the children, I am looking forward to a few quiet days here in New York before we return to Sharon this weekend, where we will be through the end of Passover.

Have a great week!

Love,

Rebecca

Could not resist

A young photographer in Sharon who wants more experience with newborns recently posted on a local e-mail bulletin that she is working on a project and needs very young babies. When I saw this I could not wait to tell Dina, who had already beat me to it and made an appointment for this morning.

She chose to dress Julia in an outfit I had found on our shopping excursion the other day. I can’t wait to see the professional photographs, but here’s one I took before they left for the studio.

Today is our daughter Simmie’s birthday. On the 4^th of April she was forced into the world by medical necessity after 28 weeks gestation, weighing only 2 lbs 7 oz. Her survival was nothing less than a miracle back in the late 1970s, a miracle for which I have been grateful every day since then. Happy Birthday, Sim! Wish I could arrange for him to come here and sing to you!

Have a great weekend, all.

Love,

Rebecca

Exhausted but had to share a smile

How can one tiny person leave a whole family of adults so thoroughly exhausted? Julia is our fifth grandchild and this point never ceases to amaze me!

I will let some pictures do the talking here so I can go get some much-needed rest! We’re having a blast but I am definitely not getting any younger.

The three Saks kids and Mom

Julia's first bath 

Apres bath chillin' with big sister Ella

Love,

Rebecca