Survivorship

I received an e-mail message today from

Survivorship Celebration celebrationevents@mskcc.org 

The message read:

Join us for MSK's Survivorship Celebration!

You’re invited to Memorial Sloan Kettering’s Survivorship Celebration. Co-star of TLC's Little Couple, neonatologist, and cancer survivor, Dr. Jennifer Arnold, will deliver the evening’s keynote speech. Following, enjoy a reception; attend survivor-focused information sessions; pick up resources from our booths, and much more! Survivorship Celebration Tuesday, June 23, 2015 You are invited with one guest. 5:30 PM Check-in 6:00 PM Speaking Program 7:00 PM - 8:30 PM Reception, Information Sessions, and Resource Booths

Although I was treated three years ago, this is the first such invitation I have received. So I wondered whether this was the first such event, or whether there is some significance to the three-year survival point.

The first hypothesis was fairly easily answered on the MSKCC web page, where I found the following previous celebrations:

Cancer Survivors Gather to Celebrate Life After Cancer

Thursday, July 5, 2012

More than 2,000 patients and their guests, caregivers, and healthcare providers attended Memorial Sloan Kettering’s cancer survivorship celebrations last month.

Actor and Cancer Activist Rob Lowe Addresses Memorial Sloan Kettering National Cancer Survivors Day Celebration

Friday, June 21, 2013

Memorial Sloan Kettering marked National Cancer Survivors Day at its Manhattan campus and at its regional sites in Westchester, New Jersey, and Long Island.

Olympic Gold Medalist and Cancer Survivor Shannon Miller Addresses Memorial Sloan Kettering Celebration

Thursday, July 3, 2014

Olympic gymnast Shannon Miller was diagnosed with germ cell ovarian cancer, a very rare disease, in 2011 and treated at Memorial Sloan Kettering. Learn more about her inspiring story.

Clearly hypothesis #1 was not supported by the available data. That led me to hypothesis #2, and got me to thinking about the question of what constitutes a “cancer survivor.” I found this:

The National Coalition for Cancer Survivorship (NCCS) pioneered the definition of survivor as being any person diagnosed with cancer, from the time of initial diagnosis until his or her death. This expansive definition of "survivor" includes people who are dying from untreatable cancer. NCCS later expanded the definition of survivor even further to include family, friends and voluntary caregivers who are affected by the diagnosis in any way.^[6] The US National Cancer Institute's Office of Cancer Survivorship uses a variant of this expanded definition.^[6]

Based on this definition, I should have been invited to the survivorship celebration starting in 2012, the year I was first diagnosed and treated. To be honest, I do not think I would have appreciated receiving such an invitation at that point, when I had completed only 4 of the 7 planned cycles of chemotherapy, and it was not clear that I was responding as well as we had hoped. What I do not know is why I was not invited for the last two years, the first and second anniversaries of diagnosis, in 2013 and 2014. As I have often noted about MSKCC, I am grateful for their incredible expertise in the treatment of rare cancers, but most patients would be sorely disappointed if they expected MSKCC to provide the TLC that other centers emphasize.

The main point is that I am here now, three years later, and whether or not I can officially be called a “survivor” really does not matter much. We just have to take things one day at a time. And we plan to attend the event this June.

Love,

Rebecca

Pictures

A fun and exhausting day at the Harvard Arboretum followed by dinner at Rubin’s Deli in Brookline: the pictures say more than I possibly can.

Hope everyone had an enjoyable day!

Love,

Rebecca

Derech Eretz

If you have been reading my blog even occasionally, then whether you are Jewish or not, traditionally observant or not, you have become aware there are many rules on activities that a person must or must not do, or can and cannot do on any particular day. There is daily prayer and observance of Sabbath and holidays as well as dietary laws. It is easy to see why people focus on these aspects which are relatively straightforward to observe as is done in his or her community.

But there is another side of Jewish life, and that is the equally important part of the Torah’s dictates on our relationships with other people. This can be at times significantly less obvious, and hence more difficult to achieve. One aspect of this is what we call derekh eretz.

Some behavior must be legislated in order for society to function. We need to have tax regulations, traffic rules, bankruptcy laws, and trial procedures. But then there are things that should not need to be the subject of bylaws, statutes, or house rules:  chewing gum is not to be disposed of on furniture or a floor; answering a telephone requires a pleasant demeanor; in a crowded parking lot one should park within the lines. In Hebrew, such basic, obvious consideration for others is called derekh eretz, which might be translated literally as “the way of the world.” 

I thought about this when reading the following in the weekly synagogue bulletin (parenthetical additions mine for those who many not know the Hebrew terms):

The XXX family is celebrating [their son] becoming a Bar Mitzvah this Shabbat. Among visiting extended family are members with mobility issues. The family requests that adults, teens and children please be careful not to push and shove when leaving the Main Shul (sanctuary) and going to the Social Hall for Kiddush (refreshments after services). In past visits, members of the family were pushed to the floor in the crush of people entering the Social Hall. Let's try to maintain derekh eretz and keep everyone safe. Shabbat Shalom.

As someone who needs assistance with mobility, I was horrified to read this but, to be very honest, not at all surprised. Barry can vouch for the fact that I speak often about feeling somewhat invisible. I can’t be sure if it is the oxygen, the wheelchair, the frequent confusion (unintentionally saying something ridiculous), but one way or another this leaves me feeling as if I am in a bubble with a world around me that cannot see inside the bubble. I went with the whole family to a picnic sponsored by the Synagogue yesterday. It was a beautiful day and the park is nearby so I drove over on my scooter. But as I tried to maneuver around, it felt as if people simply did not see me. With all the children running around there was a lot of noise so it was difficult to excuse myself above the din, but when I did and one person noticed, that person had trouble getting the others to clear a path.

Perhaps I am being a bit too harsh. But after more than three years of being in this state, I cannot deny that it can wear thin. As Barry reminds me, my task is to not let it bother me, easier for him to say than I suspect it would be for him to do.

On a far lighter note, here is a picture of a Challah made by Sharon’s own Mandylicious.

To all the moms out there, Happy Mother’s Day!

Love,

Rebecca

Legacy

Every day thousands of people around the world die, some old and some young, some from illness and some from accidents, some by the hands of others with moral justification and some by the hands of others with little moral ground. However and whenever it occurs, the end of each person’s life is a cause of sadness for those who knew her or him. I have been thinking about this as I have read and heard the news of the death at age 44 of David Goldberg, CEO of SurveyMonkey, husband of Facebook CFO Sheryl Sandberg, and father of two young children.

Many people exercise on treadmills every day, trying to stay alive longer than they might otherwise. Many of them carry out their daily fitness regimens alone. The good news, if there can be any good news, is that this sort of accident is a rare event. But that is small solace to a family who has this experience.

I, of course, never had the pleasure of meeting David Goldberg, and if the tables were turned I cannot imagine that he would feel as sad about me as I do about him. But why do I feel this way about someone I never knew? From what has been written about him, he seemed to have been a pretty decent guy. At the same time, should I not feel a similar level of sadness for the many innocents who die prematurely of illness or natural disasters or in wars? The sad truth is that if we spend excessive time focusing on bad news about people we do not know, or about every danger that can befall us or our loved ones, we would hardly be able to get out of bed every morning.

Since hearing this news a couple of days ago, I have been walking around singing an old David Roth song called “Legacy.” Unfortunately, I have been unable to load it onto the blog but I’ve attached it to the e-mail. Here are the words if you are unable to listen.  I wish I could share it with Sheryl Sandberg.

LEGACY © 1986 David Roth

An aging man, a younger one, and a woman in her prime
Connected by their circumstance of birth
A father, son and daughter somehow all obsessed to find
The mark that each will leave upon this earth

Alone is his apartment in his favorite easy chair
The aging man endures his failing health
Nowadays preoccupied arranging his affairs
And adding up the value of his wealth

He says a prayer and falls asleep, then somewhere in a dream
He's searching for his children and he's calling out to them
"Will I leave enough behind to help you get along
Please tell me how will I be counted when I'm gone

It won't be by your worldy goods, it won't be by your gains
And not among possessions you bequeath
But wisdom, grace and kindness and the power of your love will be
The measure of the legacy you leave

The working day is over and the woman in her prime
Alone now in her office looks around
An unfulfilling business is the only sight she sees
The ticking of the clock, the only sound

She closes up and locks the door and trudges down the hallTakes her window seat that evening on the train

She stares out in the darkness but the only thing she sees
A reflection of her weariness and strain

Her mind begins to wander, she remembers all the yearsOf the struggle and persistence that go into such careers

And here she was with everything she'd worked so hard to win
And such an empty feeling burning deep within

Another late and lonely night, the younger man walks home
And slowly climbs the several flights of stairs
He pulls the shade and locks the door, unplugs the only phone
Puts himself to bed and says his prayers

A blessing for my aging dad, my sister in her prime
And a woman I once loved who got away
And for all those wasted moments when I took them all for granted
And for words I never had the nerve to say

Another night of drifting in and out of restless dreams
Of unborn children, marriage, and the lives that might have been
But lives that might have been are only lives that never were
And all I'll ever know's that I'll never know for sure

Here's to every aging person and to all those in their prime
And to passing on the love that you receive
For wisdom, grace and kindness and the power of that love will be
The measure of the legacy you leave

The power of your love will be

The measure of the legacy you leave.

Love,

Rebecca

Improving the odds

It has been over a week since I sat down at the computer to write a post. I doubt any of my readers were lying awake at night wondering what happened to me, waiting on pins and needles for my return. I am happy to inform you that I am doing just fine, perhaps even too well to take the time to post here.

Finally, finally, finally, spring seems to have arrived. In fact, as is so often the case, we will soon be complaining that it too quickly morphed into summer. So we have taken every opportunity to spend time outdoors.

The Botanical Gardens are beautiful this time of year, with so much newly in bloom. We took the new scooter and we went to many of the areas we had not seen in a long time, areas with hills that made it difficult for Barry to push me in a wheelchair. Here are a couple of pictures.

As the week moved along, the weather predictions for last weekend continued to be quite promising, so Barry again bought tickets to an afternoon Mets game on Sunday. The last time had been a bit chilly but yesterday was perfect. The less than perfect part was that the Mets lost 0 to 1. Not a thrilling game, but we a good time.

We also got into an interesting conversation. Barry and I are both right handed, as are our daughters. Joshua is a leftie. I never thought about the fact that a left-handed player needs a glove for the right hand rather than the left. Watching the game yesterday, we noticed that a fairly significant proportion of the players were left-handed. I wondered whether, in the past, parents discouraged use of the left hand, perhaps not wanting their children to be “different,” and that what we are seeing now is closer to the true distribution of handedness in the population. That theory turns out to be way “off base,” so to speak. In fact, about 10% of people in the general population favor the use of their left hand. But among baseball players, that figure is closer to 30%. Why should this be the case?

Next time you watch a baseball game, take a look at what happens when players are up at bat. At the end of a swing, the right-handed batter is facing away from first base, and his momentum is away from first base. The left-handed batter, on the “other hand” (so to speak), is facing towards first base, perhaps giving him that slight edge to run more quickly and get to first base before the ball does. This seemingly miniscule advantage may make the lefties better ball players.

So if you have a left-handed child, he or she may be at a slight advantage in baseball. We think we may be onto a great idea for Joshua’s science fair project for next year.

Meanwhile, have a lovely week. Enjoy the weather while it lasts!

Love,

Rebecca

Character

My friend Guy shared this video a few days ago, in which a teacher stages an amazingly creative prank for his mathematics students. This being early April, I would imagine it was done as an April Fools’ Day joke. But this fellow is no fool!

We managed to squeeze in a couple of movies over the last few days that have somewhat similar, or at least related, themes. The first was Noah Baumbach’s “While We’re Young.” Ben Stiller plays Josh, a pleasant and reasonably well-adjusted 40-something year old fellow who is struggling with getting older and not having accomplished all he may have wanted, while the next generation is newly reaching adulthood and, as the newcomers to this stage, making his aging peer group feel less important. Josh and his wife, Cornelia (played by Naomi Watts), befriend Jamie (Amanda Seyfried) and Darby (Adam Driver), a 25-year-old married couple with whom they become friends. Although they all live in New York, the two couples seem to see the City through different eyes.

There were two actors in the film who looked and sounded familiar but took us a little while of watching to realize who they were. The first was Charles Grodin, who plays Cornelia’s father, a successful film maker who leaves Josh feeling inadequate. The second was Peter Yarrow, formerly of the trio Peter, Paul, and Mary, who plays a left-wing intellectual who seems unhappy and disappointed with everything and everyone. There are no real surprise endings: you can see that the story is heading to a new level of self-awareness and change for the couple, and in the final few seconds you are given a glimpse of what that will be.

The second film was called “Clouds of Sils Maria.” Kristen Stewart plays a young woman named Valentine who works as a personal assistant to an aging, once-famous actress named Maria, played by Juliette Binoche. One of Valentine’s many responsibilities is to help Maria memorize and rehearse her lines, which they do while walking through the magnificent mountain side in the Swiss Alps where they are staying to prepare for the filming. Because the two characters switch frequently between their role relationship and their actual relationship, it is often somewhat confusing to understand just which is being discussed. Perhaps that is precisely the point, the blurring between Maria and the character she is playing in the film, between Maria’s personal relationship with Valentine and the relationship they have as actress and assistant. Perhaps this explains the name, the clouds that blur and hover over their relationship.  

Early in the film, Valerie and Maria travel to Zurich so that Maria can accept an award on behalf of the filmmaker with whom she worked on many projects. Unfortunately, they arrive to discover that the filmmaker has died, making the award a posthumous one. There are a number of sub-plots, including a young director who is remaking Maria’s first hit movie, but this time having Maria play a much more minor role as an older woman.

These two films were different perspectives on essentially the same issue: growing older and accepting who we are, with all its disappointments and unhappy memories that can take over if we let them. “While We’re Young” ends, in my mind, on a dautiously optimistic note, but “Clouds of Sils Maria” paints a much less rosy picture. If you happen to know any film students, these two could make a very interesting thesis.

Last, we went this week to hear David Brooks discuss his new book, The Road to Character, at the 92^nd Street Y. His focus is largely on two categories of virtues around which our lives are based: the “resume” virtues, which revolve around external success, and the “eulogy” virtues, internal attributes such as kindness and honesty. Most of us spend our lives in dogged pursuit of the former but do not spend a lot of time thinking about the latter. We think about how to educate and position ourselves to advance our careers, but not so much about how to educate and position ourselves to advance the albeit more difficult to measure behavioral part of our lives. Mr. Brooks is a terrific speaker, sprinkling his talk and responses to questions with humor where appropriate while able to be serious and moving as well. He has apparently spoken countless times at the 92^nd Street Y and I suspect we will be looking for him again. And we definitely intend to read/listen to the book!

There is supposed to be a large outdoor celebration of Israel Independence Day here in Riverdale this afternoon, but outside may be too cold and if they move it indoors it will undoubtedly be too crowded. So I may hop on my scooter and check it out if it’s not raining.

Have a wonderful upcoming weekend.

Love,

Rebecca