MY BEST WRITING

Posted By on December 1, 2016

  • My Faith My Way (2016/09/01)
  • The Grief that Howls (2016/11/01)
  • Cancer: Emperor of All Maladies (2015/11/15)
  • Kids, Cars, and the Unpredictability of Life (2011/02/02)

A WOMAN TO REMEMBER

Posted By on December 1, 2016

 My cousin Polly died in her sleep on November 19, 2016. And I wept for all we had lost. Polly Wittenberg Rothstein was one month past her 80th birthday.

This is not a New York Times or a Wall Street Journal obituary. It is simply my remembrances of a cousin loved for who she was and for how she lived her life. Although she’s now lost to us all, our memories will keep her unique.

Polly and I were close as youngsters. As we grew older, though, and carried on with our lives we moved apart. Yet we remembered always the closeness that she and I experienced as children and that blossomed again each time we saw each other, no matter the number of years gone by.

My mother died when she was 40 years old and my dad, my older brother Stan and my grandmother, my mother’s mother, brought me up. I suspect that my Aunt Sylvia, Polly’s mother, took pity on them and would invite me to spend weekends at the Wittenberg home in Fairfield, Connecticut.

Aunt Syl was affectionate, beautiful to look at and fun to be with. Uncle Harold, a warm, amiable man was Aunt Syl’s husband and my mother’s only brother. They were a wonderful and intact family. Many years have gone by since Uncle Harold passed away and, just a short while ago, on January 20, 2016, Aunt Syl died. She was 101 years young.

Polly was the oldest of Aunt Syl and Uncle Harold’s three girls; Martha was the middle child and Judy was the baby. I loved them and I believe that they loved me.

The weekends I spent with the Wittenbergs were filled with laughter and long talks. At night, I’d sleep with Polly in her full-size bed. Their cocker spaniel, Queenie, slept between us. I remember one night, in particular, when Queenie suddenly sat up, looked at me, looked at Polly, looked back at me and vomited . . . over me. Yuck. The shrieks were heard all over Fairfield. I have many memories of my times at the Wittenberg home but that one, you will agree, was outstanding.

Most of all, though, I remember how stalwart and forward-thinking Polly was. Early on, she began an organization that fought for a woman’s right to a safe, legal abortion regardless of age, race, ethnicity, or income. One afternoon, we cousins were at Polly’s home in Purchase, New York after funeral services for another aunt of ours. When the chatting finally petered out, Polly’s husband, Jesse, told us about the right-wing politicians in Westchester county, New York who viewed her with hate as well as the death threats she received all because of her stance on women’s choice. Polly just ignored them and fought on. Jesse was so proud of her but what a shock to learn that people hated a cousin we loved dearly.

Polly had surgery in her 70’s due to an ongoing problem with her back. That surgery led to a stroke which left her almost completely paralyzed from the waist down. But it did not stop Polly from doing what she wanted. She traveled widely in and outside of the United States with her crutches, her walker and her motorized scooter. For example, she frequently flew to California to visit her mother, a recent resident of Laguna Woods, her sister Judy and Judy’s family. What’s more, she flew to Guyana to visit friends and bird count for the Audubon Society.

Polly loved animals, all animals. As far back as I can remember, she had dogs as pets. And birds! Oh boy. She bird-watched whenever possible. One summer afternoon at a family reunion my husband Ed and I held at our home, some of the cousins were talking in our den when without warning Polly, walker in hand, stood up and rushed outside to our deck. What was she looking at? A distinctive bird, naturally.

Polly took advantage of everything. And that included doing what she felt she should.

When Ed and I lost our surviving child, Stacy, to breast cancer, Martha drove from Cape Cod, Massachusetts to Polly’s home in Purchase, and then drove the two of them to our synagogue in Basking Ridge, New Jersey for Stacy’s memorial. Then Martha drove with Polly to our home in Warren and along with many of our cousins, including the Wittenbergs, Goldsteins and Breslers, joined us in sitting shiva, a period of mourning for Jews. When they left that night Martha drove to Purchase, dropped Polly off and the next morning drove back to her home on the Cape. Some driving, huh?

I’m not certain Martha knew this but the next day, paralyzed as Polly was, she got into her car and drove to our house. Alone!

I must emphasize this. Polly drove by herself. Without her helper, Jay, who took her everywhere. Polly had even tied her left leg to the bottom of the driver’s seat in order to inhibit its jerking motion. Once settled into her car, she hurried to our home and sat shiva with us once more.

We insisted at the end of that evening that Polly not drive home in the dark; and so she slept in our guest bedroom. After Ed and the Wittenberg cousins who stayed over, Lewis and his wife Cathy along with cousin Jane’s husband Bob, went to bed we three—Polly, Jane and I—talked into the early hours of the morning about all things sad, wistful and cheery. And then, a few hours of sleep later and some breakfast, Polly drove herself home.

My cousin Polly is now gone. There is more, much more, but I will close now and remember her, quietly, gently and by myself.

Polly was beloved by our family and her multitude of friends. We will miss her.

And now it’s your turn.

Please tell me about the Polly in your life. What did she or he do that made the world a little brighter for us all?

∗∗∗

Editor: Edwin C. Goldstein

 

 
Editor: Edwin C. Goldstein

The Grief That Howls

Posted By on November 1, 2016

40788-2001 I recently read an article written by The New York Times columnist Jane Brody1 regarding the loss of a spouse and the healing that takes place. It was titled Recovery Varies After a Spouse Dies. The early research maintained that “the vast majority of surviving spouses adjust well.”2 New research suggests, however, that a more varied adjustment takes place.

Brody continues by noting that factors like ‘a general feeling of loneliness’ or ‘problems at work’ go beyond the “. . . limited set of measured outcomes” that were originally used. The conclusions of the newer studies found that “It can take two or three years or even longer for some to recover from bereavement.”3

I don’t know about the reality of spousal death: mine is alive and well, thank goodness. But it made me think in a different vein. What about children who predecease their parents? Someone could write an article about Recovery for Parents After Their Child Dies. Does anyone want to read that? No? Well, it may be that recovery is the wrong word. The better word is indefinite. For many parents, the grief that follows lasts an indefinite period of time.

But I don’t even want to write about the death of a child or children or the recovery period of a parent. Instead, I want to write about what not to say to these parents.

For example, when people hear that my husband Ed and I lost our only two children to cancer they look at me and wonder aloud, “How does one overcome such tragedy?” I don’t reply since I don’t know. I haven’t overcome anything.

What often follows, despite the response, or lack of on my part, are conversations of unsolicited proposals about how to get on with life. And so folks will say,

  • Relax
  • Join a bereavement group
  • Go to a shrink
  • Visit Italy
  • Go back to school
  • Go back to work
  • Play golf
  • Take an antidepressant
  • Keep busy

I don’t presume to know how others react to these proposals. My personal reaction? . . .  I continue to work hard to remain quiet. I want to look as if nothing’s changed for me, to appear as I once was and to smile though my pain festers inside.

Here, also, are some other things not to say to bereaved parents4:

  • “Your child is in a better place. You should be happy about that.”
  • “I know just how you feel. Our pet died this year.”
  • “It’s time to put this all behind you. No one wants to be with folks who are always feeling sorry for themselves.”
  • “Why don’t you have another child next year so you can put what’s happened behind you?”
  • We have to hold our family gathering at your house or it just won’t be the same. You need to stay busy.”
  • “The holidays are a time for rejoicing and giving thanks for what we have. Don’t spoil it for everyone else. Let’s pretend this never happened.”
  • “What do you mean you don’t want to decorate your home for Christmas? We’re coming over and will do it. That will put you in the holiday mood.”
  • “I know you like shopping—let’s go out together, I have so many people I have to buy presents for.”

Many years later, my head finally said ‘time-out’, and I listened to a bit of advice not asked for but given anyway. I joined a bereavement group. Ed and I differ on how we handle our losses; no less pain, just different, and I went to the meeting alone.

There were about ten of us in the group including parents who lost a son that past week, another two who lost a son twelve years before, the rest with their losses in-between, sons and daughters of varying ages. We told our stories. Everybody cried. And nobody told me how to overcome.

That night, among those mothers and fathers, I recognized, once more, that numbers really don’t count. We have lost our children, whether one child or several, and in the process, we lost a piece of our inner selves. We have been changed irrevocably, in ways that more fortunate parents haven’t whether that change is noticeable or not.

And I recognized something else that night: the need to remember that human beings are individuals. Those of us in the bereavement group have suffered through a horrific happening, or happenings as the case may be, something that we never expected and that nature, I believe, hadn’t intended: the death of children before their parents.

Although we have our losses in common, we handle our pain in distinct ways. Some of us can’t stop crying. Some of us keep it all inside. Well, yes, we’re individuals! We’re separate spirits! No news there: we’re similar in some ways, different in others. And every one of us needs to be reminded of that from time to time.

So I smile because that’s who I am. I’m feisty. I’m in control—most of the time. I accept that I don’t handle certain situations well but I do my best. I’ve lost my children and suffer my pain my way, because that’s who I am.

Which brings me back to conversations on life and situations that speak to grief.  To that end, it’s perfectly all right to say, “I’m sorry for your loss.” And then, let it go.

###

Editor: Edwin C. Goldstein

 *There is a plethora of support groups available for anyone interested. This is not to suggest support groups offer answers for everyone or even partial resolutions for some. But for those who are interested, the Internet affords many examples of bereavement websites including the following:

  •  www.compassionatefriends.org . Grief support after the death of a child.

1) Personal Health. September 27, 2016.

2) J Fam Psychol. 2008 Apr; 22(2): 203–211.

3)  Klass, 1999; Rubin, 1993.

4) CompassionateFriends.org

 

 

 

 
Editor: Edwin C. Goldstein

NAVIGATING CANCER: A Lay Person’s View

Posted By on October 1, 2016

 

images10Cancer! What a word. The sound of it alone shivers the soul. Although every major illness creates the same reaction, I am most familiar with cancer. I know its nightmare best.

I am a medical sociologist who has lost two children to cancer: Valerie at 9 and Stacy at 37. I have endured the illnesses side by side with my children although I do not presume to have the education or the knowledge that a physician has. I do know, however, that whether it is a relative, a friend or an acquaintance, the person newly diagnosed often finds that the information about the causes, the treatment and the side effects appear labyrinthine.

And because the illness is complex and because there are so many different types , I’m going to reduce the data a bit so that, hopefully, the most significant pieces stand out. Please take the following under advisement, think about it and then use it as you’d like.

At the start, when seeing a board-certified oncologist and/or hematologist for the first time or the umpteenth time, the most important thing you can do is to bring along someone you trust to the appointment. In other words, you need a proxy: a husband or wife, a parent, some relative or close friend. The proxy role in the medical interaction, of course, is not new; most parents have been proxies for their sick children just as many adult children or spouses have acted as proxies for their infirm parents or mates.

And so, after that medical appointment, bounce all that information you received back and forth between you and the proxy. Make sure you understand it, that you both heard the same thing.

If you still don’t understand something—or anything—ask the oncologist and/or hematologist again. Take notes, then go online to a reputable site (I have offered, further down on this post, some websites to look at) if you have a computer; if you don’t, go to the library. Ask away until you know what he or she is talking about.

Those of you who have been newly diagnosed with cancer may decide to think it through first before deciding which treatment is best. Take your time.

Since we want all the medical information possible before making any decisions, I offer below, a condensed checklist from the 9th Annual Cancer Guide for the Newly Diagnosed*. The questions are fairly inclusive and they don’t have to be asked all at once. Some of them don’t even have to be asked. It’s your decision. You pick and choose.

The Checklist:

·    What is the goal of the treatment? Is it curative? Will it extend life? Will it help with the symptoms of cancer? What are the chances that the treatment will work? How will doctors determine if a treatment is working?

·    If the treatment does not work, are there other options?

·    What are the potential risks and side effects of the treatment offered? How do side effects of this treatment compare with side effects of other treatments?

·    How will the treatment be given, how often and for how long?

·    Are there ways to prepare for treatment and decrease the chance of side effects?

·    Will daily activities be restricted in any way? Diet? Work? Exercise? Sexual activities?

·    Are there any clinical trials to consider?

·    How much will the treatment cost? Will it be covered by insurance? (some oral cancer medications are not covered by insurance although the government is trying to correct that).

·    After treatment, what are the chances of being cured, in remission or relieved of symptoms?

Each of the above questions should be weighed carefully: the positives, the negatives and the risks versus the benefits.

Some Reliable Resources:

·    National Cancer Institute: www.cancer.gov

·    Memorial Sloan Kettering Cancer Center: mskcc.org/cancer-care/treatments/symptom-management/integrative-medicine

·    American Cancer Society: cancer.org/AboutUs/HowWeHelpYou/rumors-myths-and-truths

·    American Society of Clinical Oncology: cancer.net/sites/cancer.net/files/myths_and_facts_about_cancer_fact_sheet.pdf

Many emotions come with a cancer diagnosis. Cancer requires not only an oncologist/hematologist who is medically well-qualified but requires, as well, someone who will listen and respond to your concerns, both physical and emotional (please see my post from 5/02/2016, Grand Rounds: The Parent’s Side). Do not be shy or reluctant to make your needs clear.

Be good to yourself. Since cancer survivors are growing in large numbers, treating yourself with thoughtfulness and diligence are as important as treating the cancer itself.

###

Editor: Edwin C. Goldstein

*CURE Magazine in Association with the American Cancer Society: 9th Annual Cancer Guide Newly Diagnosed. 2016. p. 39.

 

MY FAITH MY WAY

Posted By on September 1, 2016

10068882[1]My husband Ed and I along with most of our extended family and friends will celebrate the beginning of the Jewish New Year, Rosh Hashanah, with dinner at our home. On the eve of the holiday, we will light yahrzeit candles in memory of our loved ones who have died. I will also recite one of the few Jewish prayers I remember from Hebrew School. I’ll cry and Ed will hold my hand tight. It is always hard for both of us.

And so, once again I am compelled to reexamine my faith, or lack of it. And when I do, I think back to one of our younger daughter’s many hospital stays throughout her six-year battle with cancer.

Valerie had been hospitalized at Babies and Children’s Hospital in New York City, this time after surgery to remove her right lung because of metastatic bone cancer. The procedure left our bouncy little eight-year-old pain-ridden and cranky. Her eating habits were always poor but this latest assault to her body suppressed what slight appetite remained. So, when she wanted Oreos, I raced to the hospital cafeteria—Oreos by choice, though any cookie would do—nutrition be damned.

In a rush to return to Val, with cookies in hand, I took a shortcut. And, as often happens with shortcuts, this one turned into a drawn-out route through the main lobby of the hospital. On that accidental tour, I passed the hospital’s chapel.

A weary-looking woman, her sweater stretched tight over a very pregnant belly, was walking through the doorway. Never noticing the chapel before, I slowed down and peeked in. The chapel lights, turned low, cast a hazy, quiet authority over the interior and urged me to consider, anew, all things theological.

Brought up as an Orthodox Jew, I had attended Hebrew School at a conservative synagogue in Connecticut to prepare for my Bat Mitzvah, the ceremony symbolizing religious responsibility for a thirteen-year-old Jewish girl. I rebelled when I was twelve and began to torture my father with an infinite number of complaints delivered in a whiny voice. He gave in before long and I was allowed to quit. No Hebrew School, no Bat Mitzvah.

I cracked a bit of Dad’s heart with that decision but it healed quickly. He loved me too much. Yet, whenever Bat Mitzvahs were mentioned, he’d look at me and shake his head from side to side, the religious slight bringing a sad smile to his face.

While not confirmed as a Bat Mitzvah, I held a fixed belief in God: my father’s God; the God of the bible stories that I read incessantly as a child; and the God who answered all my prayers—if my father or my older brother Stan didn’t answer them first. Naïve? Perhaps.

My immediate family, close-knit but small, included my grandmother who lived in the apartment across the hall from us. Her daughter Edna, my mother, had died at 40 when I was nine years old. I do not remember her. It was my father, my older brother Stan and Granny who doted on and nurtured me throughout my growing years.

When he was twenty-six, however, Stan was critically injured in a car accident, and remained unconscious in a New York hospital until his death six hours later. I prayed. Oh, how I prayed for his recovery but although Dad and I were at Stan’s bedside throughout his ordeal, he never awakened. My brother was unable to hear our last parting words of love. That night I lost my best friend.

Belief-altering? Oh yes. Stan’s death did that. And so, in a meteoric turn around, the believer within me vanished and I withdrew from anything based on faith. Instead, my secular values rose to the surface as did my ample supply of optimism and tolerance.

As time passed, despite a persistent uneasiness about my religious views, I came to trust in the best part of the individual. Multiplied by the vast numbers of humankind, the essential quality of goodness affirmed the core of our humanity. Reality sometimes denies this, I know, but I tend to ignore that.

At any rate, confidence in the individual essence held sway over my father’s omnipotent, unknowable God. To me, that God, supposedly benevolent, often appeared to lack mercy. When questioned, Dad and others with a religious bent responded to personal and worldwide horrors with a sigh and the explanation, “It is God’s will.”

I had never been able to grasp the concept behind that statement. A doctrine about individually controlled human behavior made more sense to me. I understood that.

By and by, in searching for further details to structure my earthly opinions, I came across the Hebrew concept of Tzedakah, a charitable conviction that includes a variety of practices, such as giving aid and money for those in need or simply offering a smile or a courtesy. It’s an obligation that rests on rich and poor alike and requires respect for everyone. Thus, we give of ourselves and get back from others. Or not. In any event, it is a good formula to live by.

Years later, with Valerie seriously ill, I still tried to be helpful to others, to be as humane as possible and to give what I could, when I could. But after Val’s lung surgery, I found myself calling for—praying to?—someone, something, to deliver my daughter from her dreadful illness. Divine intervention? My father’s God? Fine. I simply needed it done.

And like a wartime soldier alone in a dank and dirty foxhole, the disbeliever in me stepped back, just a little, just in case, and left open the possibility of a tender force hovering above and around. Help, however, did not arrive.

We lost Valerie to bone cancer when she was nine and our surviving child Stacy died at thirty-seven after a twelve-year battle with breast cancer.

If asked soon after, I would have replied that my position on religion had hardened even further. As it turned out much later, it had only altered somewhat. Times change, beliefs bend and thoughts become carefully, if minimally, modified.

Today, I recognize that I am clearly in doubt about an omnipotent being watching over us. Yet no doubt exists in my mind that my husband and I will be together someday with our daughters and all of our loved ones. I also know that Dad is watching me from above in every instance religious or otherwise. Is that spiritual? Or is it my personal history and Jewish tradition coming to the fore?

The Hebrew concept of Tzedakah, the prayers recited on the holidays, the special yahrzeit candles lit in memory of Stacy and Valerie and our other loved ones, the dinners with our family celebrating the Jewish holidays, and my effort to ensure that they all do happen—a need I am somehow unable to resist—connects me to a faith that remains embedded in my psyche. I am comfortable with that.

I am curious, however, about that pregnant woman in the chapel; and my thoughts shift back to that day, not for the first time. I have wondered about her over the years as the questions continue to pop up one by one. Who had she been visiting? Her sick child? A young relative? Did she have strong religious beliefs? What were they? Did those beliefs help her through the tough times? Or was the chapel merely a calm spot in a chaotic universe?

I should have asked her back then.

###

Editor: Edwin C. Goldstein

Suzann B. Goldstein is co-founder along with her husband Ed of THE VALERIE FUND, a nonprofit organization that supports comprehensive health care for children with cancer and blood disorders throughout New Jersey, New York City and the Philadelphia area. Suzann and Ed endowed and renamed The Rutgers University Cancer Institute of New Jersey’s breast cancer center, the STACY GOLDSTEIN BREAST CANCER CENTER. Suzann has her Master of Arts degree in medical sociology from Rutgers, The State University of New Jersey. She is a freelance writer and poet and has written a yet-unpublished memoir, WHY ME? One Mother’s Story. Suzann can be contacted through her blog www.unexpectedlives.com or her website www.suzannbgoldstein.com.

 

 

 

THE VALERIE FUND IS 40!

Posted By on July 1, 2016

IMG_7933THE VALERIE FUND is            40 years old!

And so, in honor of our wonderful nonprofit foundation established in memory of our younger daughter Valerie, Ed and I gave a speech at THE VALERIE FUND’s eleventh WALK/RUN. It was held at Verona Park in Verona, New Jersey this past June 11th.

We had loads of sunshine, we spoke in front of a crowd of over 5000 folks and, best of all, joining us were many of our special VALERIE FUND children in their bright green tee shirts with “I’m a Proud VALERIE FUND Kid” printed on the back.

The event was terrific.

The following is our speech … our Frick and Frack donation to all who listened and to those who missed it! I hope you rejoice in all the good things that came our way that day and know that there is more ahead. By the way, the WALK/RUN alone raised more than $5 million dollars over the past five years.  Thank you, one and all.

###


ED:
Since this is THE VALERIE FUND’s 40th Anniversary, Sue and I would like to tell you, briefly, how we got started and where we are today.

When Valerie was diagnosed with cancer she was treated at Babies Hospital in New York. That caused many long and upsetting car rides. Each time, on the way back to New Jersey after her chemo, Val would throw-up into a pot that we had ready in the car for just those occasions. Our anguish was intensified knowing that our healthy child Stacy was separated from us. Through all of Val’s hospitalizations, we saw Stacy only in the early morning or late in the evening.

SUE:
Toward the end of Val’s illness, I saw what a New Jersey regional hospital could do. I had to rush her to the Emergency Room at Overlook Medical Center here in New Jersey but couldn’t park close enough to the hospital’s doors … and I didn’t know how to get Val from the car and into the hospital without jarring her. A security guard standing at the hospital’s doorway saw my predicament and brought out a gurney. He helped me put Val on that gurney and with me by her side, he wheeled her into the emergency room. I will never forget him. I just hope I thanked him enough.

For the few days we were at Overlook, I slept on a bed in Val’s room—not a chair—and I ordered my meals when Val did. I didn’t have to leave her to go searching for food. I did not have those luxuries at Babies Hospital in New York. An added benefit was that Stacy was able to visit her sister there. It was an eye opener.

ED:
Those experiences were the seeds that brought about THE VALERIE FUND. And so, a few weeks after we lost Val, in January 1976, I suggested to Sue that we start a foundation in Valerie’s memory.

SUE:
And all I thought was, “Too soon.”

ED:
I also suggested that the 3 of us, Stacy, Sue, and I, go away for a week to clear our heads.

SUE:
Again, I could only think, “It was too soon!” I did not want to go.

ED:
Despite the misgivings, off we went to Curacao – had a miserable time – came home and created a list of people who had started their own nonprofit foundations.

SUE:
We had a really miserable time, but when we came home from Curacao we began to make telephone calls to those strangers on our list, and they all told us don’t

do it; it won’t work. They said it was too hard: too hard on the family and too hard on the marriage.

So … we did it.

ED:
We called a meeting of our friends and asked them to bring their friends and told them we wanted to raise money for children with cancer in New Jersey. At that time, there were no pediatric oncology centers in the state.

SUE:
We set up chairs in our living room. I bought cookies and soda and made iced tea. One friend told me that my iced tea tasted like white fish. Never served that tea again.

ED:
The group of folks that came to our house were very interested in our concept so we started a search committee that ended at Overlook Medical Center. We made a two-year commitment of $25,000 to support our first VALERIE FUND CHILDREN’S CENTER. Of course, we didn’t know where the money was coming from but we would worry about that later.

Our first fund-raiser was a picnic held at Camp High Hills in Warren, New Jersey. We charged $10 per person and $25 per family. We prayed for a sunshiny day and we got it. Over 400 people showed up. It was great. And we netted $3575.00!

Our next fund-raiser was a major step up. We decided to hold a Sports Roast at a facility that seated 750 people. But we ended up selling over 1400 tickets! That night 1100 people showed up and we seated them all by adding more tables till there wasn’t an inch to spare in the room. Thank goodness no fire inspector came.

SUE:
On the afternoon of the Roast, before we could seat anyone, the dining room had to be made Valerie Fund-ready. The room was huge but there was a bunch of us workers putting flowers, journals, and balloons on the tables and dais and the work went quickly. When we finished, I took one last look around and saw only this vast empty space filled with loads of empty tables. How were we going to fill this room with people?

Well, come eight o’clock that night, we let the ticket holders in. I was at the front door greeting people all evening and sending them on their way toward that gigantic dining room. Ed and Anthony Ingrassia were at their positions taking care of all the problems—and there were many, believe me.

Meanwhile, none of us had moved from our work spaces. So, now it was time for us to clean up our end and find our tables. When we finally walked through those big double doors, we saw a room that had gone from immensely empty just a few hours before to a place teeming with people, many sitting at their tables but lots more also roaming around saying hello to friends. As an aside, we had invited the New York Giants and our roastee, their coach John McVay, as well as other athletes from other teams. We sprinkled them throughout the room seating them at the various tables and on the dais. It was astonishing. And exhilarating. And we netted $250,000 for the evening. WE HAD DONE IT! THE VALERIE FUND was off and running.

ED:
Yes, we HAD done it. And we knew it was time to continue our mission of placing VALERIE FUND CHILDREN’S CENTERS throughout New Jersey.

SUE:
So, friends, look where we are today: Six VALERIE FUND CHILDREN’S CENTERS  for Cancer and Blood Disorders and, as most of you know, they are at

Overlook Medical Center

Newark Beth Israel Medical Center

Morristown Memorial Hospital

Children’s Hospital at Monmouth Medical Center

Morgan Stanley Children’s Hospital in New York

Children’s Hospital of Philadelphia

And on July 1st, our seventh Center, St. Joseph’s Children’s Hospital in Patterson, New Jersey will open for business!

And let’s not forget THE VALERIE FUND’s wonderful CAMP HAPPY TIMES in Tyler, PA. It’s a free one-week overnight camp for children with cancer.

ED:
Your support throughout the years has made all this possible. THE VALERIE FUND CHILDREN’S CENTERS for Cancer and Blood Disorders form the largest network of hospital-based outpatient healthcare facilities in New Jersey and is now one of the largest in the nation. We have a fabulous medical and support staff caring for our children and their families and they supply that extra ingredient … LOVE!!

SUE:
What does all this add up to? Well … I’m going to tell you. I met two VALERIE FUND CENTER moms a while back. One had a son diagnosed at five with leukemia; he’s eight now and a year off treatment. The other mom’s son was diagnosed at 20 months and he’s still on treatment. They’re very young, these moms. And they talk about THE VALERIE FUND as if it were responsible for everything good in the world.

IN FACT – Ed and I believe, THE VALERIE FUND CENTERS and THE VALERIE FUND are responsible for a lot of the good right here in our state.  One of the moms said to me that a friend asked why she didn’t go into New York for her son’s treatment. And she said, “Why would we do that? We have THE VALERIE FUND right here in New Jersey!”

And so, the children thank you, their families thank you and we thank you. From the bottom of our hearts.

ED:
Thank you for your continued support. If you have any questions or want to volunteer, come up and talk to us.

SUE:
Come up and talk to us anyway!

###

 

 

BEFORE THE BEGINNING: Carlene and Bethie

Posted By on July 1, 2016

The following true story happened a year or so before our younger daughter Valerie was diagnosed with Ewing’s sarcoma, a bone cancer. I have never forgotten it since it demonstrates the hold that memory sometimes has on time.

 ∞∞∞

Dressing for Aaron’s Bar Mitzvah was hazardous duty with my two little kids around and I wasn’t sure whether or not I passed muster. Did I shave both legs?Yup.

Stacy and Valerie, ages four and two respectively, had converted our king-sized bed into a trampoline. They were jumping up and down, almost rhythmically to “The Eensy Weensy Spider,” and belted out the words like zealous songsters. I called from the hall, my arms full of freshly-washed clothes, “Stop that jumping or you’ll . . . ”. They didn’t hear me, their shouting voices too loud.

It was a typical Saturday morning.

I hollered to Ed who was in the shower, “Do we really have to go? The girls are wild. Someone’ll get hurt and I can’t find my other earring. We’re going to be late.” I was rattled.

The baby sitter was due shortly. There was time so we wouldn’t be embarrassingly late. A little late was okay. Very late was no good. But we’d go. Of course we’d go. If necessary, Ed and I would sneak in the side door of the Temple. Whether late or very late, we’d celebrate with Aaron’s family and friends. His ritual passage into Jewish adulthood was too important to miss.

Shouting at the girls to calm down, I heard some giggles, and then, for the moment, silence. I found my earring on top of the TV set, slipped on my heels and sighed. I was done. Stacy, on the other hand, was running around naked except for a pair of underpants and my bra around her waist, and Valerie . . . “Where’s Valerie? Val, where are you, pussy cat?”

She was in the kitchen. My two-year-old was sitting on the floor in front of the sink, her cheeks and hands smeared with—“Oh m’god! Eddie, something’s stuffed up Valerie’s nose. She got into the garbage can. Looks like green peas and a safety pin.” How about that for ending his shower in a heartbeat?

While Ed held a teary Valerie, I removed most of the peas and the pin which, to my profound relief, was closed. Stacy, wide-eyed, stood nearby fixated on the delicate extraction process. Why did Valerie do that? No one would ever know. She stopped crying, though, only when Leslie, our baby-sitter, arrived and brought her young charges some chocolate. She was great, thank goodness, and the girls loved her.

Immediately before leaving the house, I darted around searching for anything else that my two imps would see as fair game for weird use. I wished that Leslie had come earlier. She would have dealt with it all: the peas and safety pin and the naked one wearing a bra. Still, the kids were mine and terrifically cute. I missed them the minute I left the house although that rarely stopped me from rushing away.

Once outside, as I headed toward the passenger side of the car, I motioned to Ed to pull his car window down. As usual, there had been no time for that last important glance in my bedroom mirror. As I twirled around for him, I said, “Eddie, do I have lipstick on? Any runs in my stockings? Do I have green peas on my dress?” My husband was wonderful. He revved the motor and said, “You look beautiful.” I grinned and began to relax.

Later that afternoon, when the Bar Mitzvah service was over, one hundred and twenty-seven of us shifted into party mode, ready to make merry in the Temple’s dining room. Ed and I sat with eight others at a table that bordered the temporary dance floor while the band played music that was loud and unfamiliar. Babbling voices added to the din as the noise rose quickly to improbable heights. Yelling was the only form of communication, and disjointed though cheerful conversation resulted. It was the norm at such affairs.

Ed was seated on my left and on my right was Carlene, a fragile-looking, waxen-faced woman with short, curly brown hair. I didn’t catch her husband’s name, but he was a heavy-set, balding man and sat on Carlene’s right. His back to her, he was gesturing enthusiastically to someone across the room.

After we introduced ourselves, Carlene touched my arm and skipping all small talk began the tale of her daughter Bethie who, at five, had been stricken with leukemia and died soon after. Thinking about my two healthy daughters, I spent the rest of that festive occasion listening to Carlene’s story of her little girl’s illness and death.

I was startled to be chosen her designated listener and dismayed by the story’s content. Childhood cancer was an unknown entity for me and among those I knew, existing only in a realm far from ours.

Carlene and I were two young women, both mothers, meeting for the first time at a joyous gathering. She needed to express her sadness and on a level beyond my expectations. I was on hand, and while at first reluctant and ill-prepared to concentrate, soon became enmeshed in the brief history of her child. I started to mourn for Bethie as if I had known her. Straining to understand Carlene, I leaned forward, my eyes not leaving her face, a faint gasp here and there my only sounds. Why had her husband walked to the next table? Why wasn’t he sitting next to her, comforting her, grieving with her?

Carlene’s emotions were constrained, her eyes grounded on her plate, her words spoken in dull tones. Seldom looking up, she talked of chemo burns, IV poles, bone marrow punctures, hematomas, and more. Carlene was a nurse and I thought that might have explained her detached manner and the medical terms. How easily those complicated words rolled from her tongue. I didn’t know, then, that most parents with severely ill children, regardless of profession, talked that way. They were articulate in the science of their child’s particular disorder. I didn’t know, either, that acute sorrow displayed in a number of ways.

Ed and I danced during dinner—our standard shuffling two-step that Ed learned years ago and had no interest in refining—but it wasn’t often. As we swayed to the music the catering staff set up elaborate buffet tables. The food was luscious-looking but my appetite had vanished.

The initial discomfort with Carlene’s story had given way to its power as a mother’s lament and my wonderful husband Ed didn’t object when, after each dance, I hurried back to our table. I knew Carlene had to continue with Bethie’s story although I suspected that, for her, it was a story without end. A child may die but, for the mother, that child is never truly gone.

For me? The memory of Aaron’s Bar Mitzvah and my one-time-only friend remained stuck in my brain. It has never faded. Carlene elected to talk about her daughter that day because, I imagine, Aaron’s coming-of-age celebration gave free rein to her mourning and allowed the unbearable to spill out. Amidst all the feverish pleasure, she and an accidental stranger relived one of life’s unnatural happenings, a child lost before her time.

I never saw Carlene again although I thought about her often. It seemed odd that she saw fit to tell me Bethie’s story. She turned to me, an unknown, and took the chance that I would be a safe listener and so I was. I didn’t interrupt; I didn’t turn away; I didn’t offer advice. Carlene simply wanted to tell her story. It consumed her. And why not? It was a consuming story.

Clearly, the fusing of a ritual celebration, a nearby stranger with a sympathetic face and a mother’s urge to speak of her daughter’s life and death inspired a burst of trust. How could I forget that? For Carlene, Bethie’s story had no end. For us, it hadn’t yet begun.

###

Editor: Edwin C. Goldstein

TIME AND MEMORY: A Pair to Remember

Posted By on June 1, 2016

images[2]I’ve often thought about time as a concept and how it relates to memory. Marcel Proust, the French novelist, critic and essayist called memory “the great preserver.” He called time, on the other hand, “the great destroyer.” One preserves, the other destroys. Some pair, huh?

According to Proust, time, the more powerful can override and change memory. As a result, we forget, we combine, we enhance. And, sometimes, we delete. Often it doesn’t matter. The changes are incorporated seamlessly as truth is mixed with unintended fiction to adjust for mangled recall. Although Proust doesn’t clarify the alterations, for me, they count only as long as they are faithful to the individual characters or events. That is what endures.

Something else takes place as well. In capturing a life’s story—for example, my memoir WHY US?—one memory triggers another and the past opens up in a fresh and invigorating way. Earlier episodes once thought lost are brought to mind. Different perspectives take hold and images are modified as the stale or the well-defined recollections of long ago are revived.

All of us, at some point or another, have searched for the truth as time and memory have shaped it and we each tell our own stories as honestly as possible. You may have trouble recalling the details of actions long ago but some form of them are buried in our brains. Look for them. They are the stories about loved ones lost and finding them anew, through writing and remembering, remembering and writing  . . .

Maybe those memories have changed, or just maybe they remain the same. But no matter. Write them NOW as you remember them.  You may never have a better chance.

###

GRAND ROUNDS: THE PARENT’S SIDE

Posted By on May 2, 2016

A GLIMPSE OF BEHAVIOR

I gave the following Grand Rounds speech to doctors and medical students at Newark Beth Israel Medical Center in April 2016. My husband Ed suggested I post it on my blog Unexpectedlives.com. I agreed.

I thought about what I would say in the days before the speech and A Medical Problem that Won’t Go Away, http://suzannbgoldstein.com/blog/?p=1622, posted in February, began to stand out. Please read it if you haven’t already since I believe there is a problem that must be addressed in the doctor-patient relationship.

I received many comments which pointed to a separation or perhaps a distance that forms on the part of some doctors that has no place in medicine. Over time, I imagine, it will diminish. I hope.

###

***Please let me hear your comments. What are your experiences? Good? Bad? I want to hear them all.

______________________________________________________________________________________________________________________________________

untitled - CopyTHE PARENT’S SIDE OF THE STORY

Good morning, everyone. My name is Sue Goldstein.

And this morning, I’m going to tell you something that I’m sure you already know although it bears repeating: it is a shock—a horrific shock—to hear that your child has cancer.

I remember each moment of it vividly. The surgeon said, “I’m sorry to tell you that Valerie has bone cancer.” I heard him but didn’t look at him. I didn’t look at my wonderful husband Ed either. The room turned silent. Nobody said anything; nothing I heard anyway. And finally, after spending a few moments looking down at the doctor’s loafers—I remember thinking how small his feet were; I also noticed how shiny those loafers were (what was I thinking?)—I got up, my whole body shaking and said, “I need to go to Valerie.” My 3-year-old was in recovery and all I wanted was to hold her and never let her go.

So, my first point in this presentation is not medical. It is emotional. Purely emotional. And I believe that you, as doctors, understand that: you understand it as if the child were your own.

We were fortunate in that our oncologist was an excellent doctor but, unfortunate, in that he was an imperfect one. And that relates to his affect. Ed and I were uncomfortable with him. There was a sense of detachment surrounding him that we couldn’t crack. He wouldn’t or couldn’t let down his guard. This was before my work in medical sociology so I didn’t know, then, that doctors were also human beings!

My nephew Bill once said, “Aunt Sue always has a story for us,” and so, of course, I have a very short story to tell you. It goes like this.

It was Valerie’s last overnight in the hospital after her two-year checkup to make sure that her Ewing’s sarcoma was gone, and we were going home for good. So we thought. We were waiting by the elevator and Valerie was happily skipping around on the hospital floor—it was a cockeyed skip because the radiation she had received had damaged her right leg and caused a limp.

We didn’t see her oncologist but he was standing at the nurse’s station down the hall. When he saw our daughter he shouted out, “Hey, Val, aren’t you going to come over here and give me a hug and kiss goodbye?”

All three of us were taken aback, astonished, really, at his sudden turn of such affectionate behavior but Valerie—she was five at the time—turned and ran to him for that hug. We knew, then, that she had forgiven him for all those terrible injections and the vomiting and the awful taste in her mouth and the inability to move for a few days. And so, we forgave him too. He had shown us his real self.

It was such a little thing but it meant a lot to us. And that taught Ed and I something; doctors must be kind, warm-hearted and compassionate. We, as parents, are asking a lot, I know that, but we’re in a bad situation and we need help. All the help that we can muster.

The second point is from a medical perspective. Parents think, is this the correct diagnosis? Is our child getting the best care possible? The best treatment, the best specialists, the best hospital? We have to feel comfortable with our child’s doctor, with the medications, the surgeries, and everything that goes along with such a horrid illness.

By the way, few resources were available to us then but, you know, it was a long time ago. Our daughter was diagnosed with Ewing’s in 1970. There was no Valerie Fund www.thevaleriefund.org, no Mom2Mom http://www.mom2mom.us.com/Peer Support Helpline Program or any other place to go to for help. We, as parents, at that time, were invisible.

Today, parents are quite noticeable—maybe, at times, more than you doctors would like. But I believe that it’s a good thing. At least, it’ll keep you on your toes, right?

Point three: Will the doctor listen? It is, in reality, points 1, 2 and 3. Ed had been to the supermarket for me—Valerie was very ill then and as he was standing in line waiting to check out, he saw a headline about a Japanese medication that was supposed to cure Ewing’s sarcoma. We just knew there was something to it.

Ed bought the newspaper home and when we went into New York the next day for Valerie’s appointment, he showed it to the oncologist. We wanted that medication for our daughter. We were desperate. The oncologist looked at us (he probably thought we were a little crazy because, after all, it was just a junk tabloid), and once more, showed us his human side. He took the newspaper—this was, of course, before computers, the Internet, cell phones—and said he would investigate the treatment and get back to us.

In all honesty, I don’t remember exactly what he said, but it must have been something along the lines of “It doesn’t seem to be in trial yet.” He could have said, after he looked into it—because I believe he did look into it—that the drug didn’t exist, that it was a phony, a come-on—but he didn’t. He did not dismiss us out-of-hand. He listened to us, to what we needed: for the moment anyway.

And that was important to us but it’s really not enough. We needed more then and parents need more now.

My point here is that the doctor and his or her team must do everything, not only for the child but for the family as a whole, to make their lives a little more livable. Because the family loves and cares for the child and the child is part of that family.

When looking at the points I just made, I recognize, once again, the emotional needs of everyone involved. They cannot be forgotten. We, patients and family alike, want the real you, the one who answers people with the truth in words they understand. We want the you who treats patients like family. And I believe that it’s possible: to be sensitive to us and to let us know that you care. I’m being redundant now but that’s how essential it is.

As some of you know, we lost Valerie in January 1976—she was nine years old—and we established THE VALERIE FUND one month later, in February—and now, THE VALERIE FUND is 40 years old this past February 2016, with seven Valerie Fund Children’s Centers treating children with cancer and blood disorders as well as Camp Happy Times, an overnight week-long summer camp for children with cancer. We’ve come a long, long way.

I have another short story for you. Our first VALERIE FUND Center was at Overlook Hospital. I was walking down the corridor of our only Center at the time and a patient’s mother saw me, pulled me into an examining room and introduced me to her young bald-headed son; he was sitting on the floor and playing with a toy truck. She took both my hands in hers and said to me that she was sorry we didn’t have a Valerie Fund Center when our daughter was struck with cancer.

And her words overwhelmed me. She was right. We didn’t have anything like a Valerie Fund Center in New Jersey when Valerie was sick. But I sure am glad that we do now! As I said, we’ve come a long, long way.

Yet I’m afraid that’s not far enough.

There are still some doctors who are aloof, cold, uncommunicative, without emotion.

Doctors are human, I know that now, but there is a responsibility that all doctors have … and it’s written in the Hippocratic oath that you all take.

So, what does the modern Hippocratic oath say? I’ll quote part of it. “I will remember that there is art to medicine as well as science, and that warmth, sympathy and understanding (italics mine) may outweigh the surgeon’s knife or the chemist’s drug.”

I hope you’ll forgive me for preaching to the choir but, in fact, I just can’t let it go, so with your help, we’ll do it all. We’ll take care of the patient as well as the family and, together, we’ll eliminate all the cancers and all the blood disorders and all those other awful illnesses that exist today and, in the process, we’ll ease the stresses they produce.

Thank you for listening to me.

###

It’s the Bounce that Counts

Posted By on April 1, 2016

 Resilience. Let me explain: It’s like a tennis ball. Sometimes in a game the ball skips away from you. You swing but you miss. And you have to work harder, whether it’s the next serve or the rally that follows or it’s the next game. It may even be the next day. You think hard about it, you lift your head and straighten your shoulders, then you hit that ball again and

. . . whack! That, pals, is resilience.

Both our daughters had it. The good parts, of course, often get mixed up with the bad but life has a habit of getting in the way, right? Right.

So. A few random thoughts rolled around in my brain and—pop!—out came stories about our kids and their resilience.

Valerie, our little one, was diagnosed with bone cancer when she was three years old and we lost her when she was nine. As a result, Val didn’t have time to display all the marvels inherent in her personality. Yet my husband Ed and I knew her resilience was there. One example stands out and we relish it to this day.

When Valerie was six, the bone cancer that Ed and I hoped had disappeared came back and she had to have her right leg amputated above the knee leaving just her thigh. The night before surgery, the orthopedic surgeon said he didn’t want me to be in the hospital room when he told Valerie about the operation. He felt it would be best to speak to her alone: “she’ll be angry with me, Mrs. Goldstein, not with you.” Although I didn’t understand that at all—I knew Val wouldn’t be angry with me—he didn’t explain further. I nodded (this was before I became a feminist!), said “okay” and left the room. All the same, I stood right outside her doorway in case she needed me. While I’m not sure exactly what he must have said—“I’m going to take off your leg, Valerie”—or something similar, to a small child it must have been incomprehensible. It was to me.

Ed returned from the bathroom as the surgeon was walking down the hall toward the elevator and he hollared out, “Get a good night’s sleep, doctor.” Ed did not say it as a joke. Once back in Valerie’s room, he and I tried to discuss it with her but got nowhere. All she said was, “Mommy, turn on the TV. Can I have some juice, too?”

The night after surgery was painful but the nurses kept Valerie as comfortable as possible: I tried to be helpful but I think I was simply in the way. I had been sitting up in a chair next to her hospital bed bleary-eyed with worry when the next morning, Val, fully awakened from the anethesia, and surprisingly without any pain, smiled at me as only a cheery six-year-old can. My daughter put her hand on my arm and, without any preamble, said to me, “Mommy, the doctor told me he was going to take away my whole leg. He didn’t. He left me a little leg!” Okay, I was wrong about Valerie not understanding what the doctor said.

But then, as I made complete sense of what she was saying, my eyes filled with tears and I thought my heart would burst. I beamed, kissed my little one gently, several times, maybe more. And from that moment on, everyone in our household and beyond called Val’s missing limb ‘her little leg.’

Her ability to bounce back from misfortune is what we call resilience.

Stacy was five years old when her three-year-old sister was first diagnosed with cancer and, I’m afraid, the illness became embedded in her. She was confused, she was cranky, she was saddened at the change in her family’s life. Yet, what I saw as her resilience cropped up time and time again.

Early on in Valerie’s illness, when Stacy was in first grade, she astonished us by diving full force into the role of Peter Pan in a Parent’s Day play. Our outwardly shy little six-year-old wasn’t going to let something like her sister’s cancer prevent her from showing an adaptability, a buoyancy that allowed her to jump into something that she had never done before and do it with gusto. I don’t remember if Stacy stayed after school to rehearse but she was stunningly at ease in front of an audience that afternoon.

That’s what resilience is all about.

For Stacy, it was only the beginning.

Hey. Wait a minute . . . How did she remember her lines when she couldn’t remember to pick up her clothes? Oh well. In any event, she was a terrific Peter Pan. And I say this as the mother of a woundrous child, a mother who instantly had images of a soon-to-be famous actress in the clan. Didn’t happen. 

Resilience. Bounce. Call it what you may, our kid had it.

Which reminds me of another example: a swim coach who had seen her one day at the Jewish Community Center swim pool after school. Stacy was seven. He was very impressed with her swimming prowess and wanted her on his swim team. In fact, he pleaded with me to say yes for her. I told him that I had to ask Stacy first but I didn’t think there would be a problem.

What did Stacy say? My daughter said no. Then, calmly, without another backward glance at me, went back to her homework. Wrong again. I don’t think this has anything to do with resilience but I thought it was a cute story.

Years later, we were at Stacy and her husband Robert’s home—Stacy was 36 at the time—married, with a small son Jonah and was 11 years into fighting breast cancer. We were standing around chatting in the backyard and playing with Jonah when Stacy called for quiet. She said she wanted to read a poem she wrote. What? She wrote a poem? 

Stacy then climbed up on a two-foot high cement wall surrounding a big old tree, grinned at us and recited her funny poem to an amazed audience of four with the same enthusiasm and eye-popping expression she had in her role as Peter Pan all those years ago. Great bounce, huh?

When she was 37, and in her 12th year fighting breast cancer, Stacy entered a phase II trial of a new cancer drug at Columbia Presbyterian Medical Center in New York City. She understood the trial might help not only her but others as well if it proved feasible. It was a big IF. I think she knew that too.

The daily procedure was over early each afternoon. Stacy always felt sick afterwards but by the time we got back to her home, she usually felt better. This particular afternoon she asked if I would read an essay she had written. No kidding. She wrote an essay? My child continues to surprise me.

Stacy had mailed a story she wrote called “Conflict” to The New York Times a week before. She never indicated an interest in writing to me, the writer in the family! Unfortunately, it was not accepted: The Times is too fussy but, regardless, I would have encouraged her if I had known. On the other hand, it might have blocked her enthusiasm for doing what she wanted when she wanted. Be that as it may, I took the story home, read it and loved it. Although we lost Stacy a few weeks after she mailed “Conflict” to The Times, both Stacy’s resilience, and Valerie’s, knew no bounds.

The above are only a few of the ways our girls ran away from gloom’s door: it’s their form of resilience, their bounce.

I believe that resilience exists within us all—yes, it is there—though it’s not always up front and center. We have to work at it.

For my husband and me, the tennis ball’s fluff has worn off a bit, it doesn’t bounce as high and if one looks closely the ball is misshapen. Time has altered it yet there’s still that bounce. It is resilient. And so are we.

What about your children? Tell me their stories. Tell me yours. I want to hear every single one.

###

Editor: Edwin C. Goldstein