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.

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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!

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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.

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Editor: Edwin C. Goldstein

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.

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***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.

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Editor: Edwin C. Goldstein

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.

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Editor: Edwin C. Goldstein

OH, MALLOMARS, MY MALLOMARS!

Posted By on March 1, 2016

 NOW FOR SOME SWEET (and SOUR! ) TALK

April was particularly lovely that year and my husband Ed and I had one last week in the Florida sunshine before leaving for our home in New Jersey. Four nights before we left, however, I woke up and started itching . Oh, my neck, my neck  . . .  it was bright red.

Ed drove me to the doctor’s office the next morning and she prescribed an antibiotic. Within a few days, the red itch—the doctor called it a collar—was gone. I was sure it was a bug of some sort and soon forgot about it.

Once back home I scheduled my annual dermatology appointment and in the doctor’s office a few weeks later I mentioned the crazy collar rash on my neck. I lifted my head and pointed—I thought the rash was gone by then—but she looked, saw what I didn’t and took a small biopsy swipe with an oversized cue-tip.

“I’ll get back to you,” the doctor said.

I was back in her office ten days later. “Nothing serious but I think it may be allergies. Go see an allergist.”

Two weeks after that, I was in an allergist’s office. He listened to me, looked at my neck, then stuck some strange-looking rectangular pieces all around the skin at my waistline and told me to come back in three days. “No showers or baths till then,” said he. No showers? Yikes!

“Okay, as long as you don’t tell me I’m allergic to chocolate.” I said that with a grin. Who can believe that an allergy to chocolate even exists? Certainly not me. The allergist, with one foot out the door, said “Don’t worry about it.” I didn’t.

The night before I was due back in his office I had a meeting at my house and served my all-time favorite, Mallomars. They are so good. I recommend them to everyone I meet: real chocolate surrounding a real marshmallow sitting on top of a real vanilla cookie. Yum. I eat about three or four of them for breakfast with a glass of milk (I know it’s crazy but . . . ), and often-times in between meals as well.

Mallomars are so terrific that the cookie bakers decided a long time ago that they would be available only during the winter months. Folks, they are not available from May through September. No Mallomars? None. Except in California. Why just in California? I don’t know.

The next day, back in the allergist’s office, the rectangular pieces came off, the doctor took a look and then sat down at his desk. He told me that I was allergic to fragrances. “What on earth does that mean?” I asked.

The doctor explained: “no perfumes, no talcum powder and simple, fragrance-free soap, like Vanicream. Whatever else has fragrance in it has got to go as well.”

“Okay,” said I. “My husband will use up the Dove.”

“Oh, no. He has to use fragrance-free soap too. The connubial bed, you understand.” I understood. Who cared about fragrances anyway.

I tried not to laugh but I did ask, “Is that necessary?” thinking of all the Dove soap at home.

“Yes it is, unless you want more itches like you had in Florida.”

I certainly didn’t want that. “Okay, fine, no Dove. I’ll be careful.”

“Good,” said the doctor. But then he added, “No more chocolate either.”

“What? Chocolate? What do you mean? You told me not to worry. How is it possible that I have a chocolate allergy. I’ve been eating it all my life. I love chocolate! In any shape or form. Fragrance is one thing. But chocolate? That’s not possible.” I stormed on and on. And, then, I remembered. “Last night I had a meeting at my house and served Mallomars. Wonderful Mallomars! Everyone loved them. ”

And you know what that doctor said to me? “Mallomars? Phooey! They’re terrible.”

I started to bristle. What was wrong with him? Whoever in the world didn’t like Mallomars? He had one foot out the door when he turned around, came back into the office and told me a story: a brainless, bizarre, batty story. I didn’t believe that story—the same way I didn’t believe I’d be allergic to chocolate.

He began, “When I was a young kid I played with my best friend who also loved Mallomars. I’d never heard of them before. One day he said, ‘Come over to my house after school. We have a big carton of Mallomars. They’re cookies.’

“So, over we went. My friend opened up the carton, pulled out a box, grabbed a cookie and handed it to me. I tasted it and thought I’d throw up! I made a disgusted face and said to him, This is awful. Wherever did you get this gross cookie, and why such a lot of them?”

“And that kid said to me, ‘We love them in my house. If you don’t like them, don’t play with me anymore and don’t come back. You’re a jerk.’”

“It ended my friendship with him,” said the allergist, “and I’ve hated Mallomars ever since. They’re the worst cookies I ever tasted.” He opened the office door, marched out and slammed the door shut behind him.

The allergist’s nurse, who had stayed in his office taking notes on her laptop, had been holding her hand over her mouth, trying hard not to giggle. Once he left, she shook her head and broke into loud guffaws.

So let that be the lesson for today. Chocolate is terrific and Mallomars are glorious. Don’t ever say otherwise. You will lose your best friend.

And so, what’s your favorite chocolate? Mallomars? Godiva? Hershey? Or any old dark chocolate?

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Editor: Edwin C. Goldstein

 

 

 

A MEDICAL PROBLEM THAT WON’T GO AWAY

Posted By on February 1, 2016

 Robert—our daughter Stacy’s husbandand I were standing quietly outside the double doors that led to the medical center’s intensive care unit (ICU). It was early in the morning and Stacy was inside the unit on a respirator. The doors were closed. We had been asked to leave while the nurses took care of the patients.

A group of white-jacketed residents were walking down the long hallway toward us. Someone in that crowd had told a joke and they started laughing. As they came closer the bantering back and forth grew louder. A few of the residents glanced at Robert and me as they passed by but that didn’t stop their noisy voices. Finally, the ICU’s doors opened and then closed behind them.

Robert and I looked at each other. What was wrong with them? How could young doctors, moving into their shift in the ICU, be so thoughtless? They saw us standing next to the doors and must have known we had someone in ICU, someone we loved. And then I heard Robert say, “I hate those guys.” I knew just what he meant.

Stacy, suffering from breast cancer, had recurred more and more often during the course of her illness and was at the medical center for the last time with fluid in her lungs. Over the five days, when she had been rushed into the ICU, my husband Ed, Robert and I slept on the floor of the waiting room. There were no beds or lounge chairs available but several of the nurses had given us pillows and blankets. We thanked them but it didn’t matter to us. We rarely slept those five nights anyway.

We lost Stacy on day six.

A year or so later, Ed and I were invited to the medical center to talk about some of our experiences. Once in the conference room, we took our seats along with some other folks there for the same reason and, when the moderator turned to us, I spoke about them . . . that group of shrill residents making their rounds that night.

After the meeting and just before Ed and I were leaving the hospital for home, I saw the residents milling about outside the room. I walked over, planning on saying something that would, hopefully, take the sting out of my words. I got as far as “Hi–”, when one of the residents said to me without any preamble, “You know, we work very hard and have a lot of medical expectations to live up to. We need fun where we can get it.” I looked at him and then I walked away. There was no sense in starting an argument I couldn’t win. After all, I was merely a patient’s mother.

But I am also a medical sociologist and believe that doctors of all specialties have a responsibility to their patients, clinical as well as emotional. If a patient is unresponsive, as was our daughter, that responsibility should be transferred to the proxy, i.e., a family member, a close friend or a social worker.

I also know that, personally and professionally, all doctors are different in knowledge and in communicative expertise. They are human beings and have the same failings that many of us have. I know that.

But . . . there is research that points to an ongoing and long-established problem.

For example, an older study regarding medical malpractice and published in 1975 by David Mechanic, Director of the Center for Medical Sociology and Health Services Research, University of Wisconsin, suggested those deeper issues. Based on 1,017 interviews, he found a subgroup that reported doctors maintained poor doctor-patient relationships [because] . . . “they are too interested in money, they are less accommodating and more difficult to reach, and they are more impersonal or inconsiderate.” Later studies, from 2007 on, about the doctor-patient relationship found that in a number of cases they [doctors] lacked warmth and friendliness as well as an inability to bother with the patient’s concerns and expectations.

In addition, two recent books, with titles that tell clearly of this concern stand out: Treating the Ailing Doctor-Patient Relationship (2014) and Putting Humanity and the Humanities Back Into Medicine (2015).

And most telling, in the January 7, 2016 New York Times, in a review of the book When Breath Becomes Air the author, 37-year-old neurosurgeon Paul Kalanithi, was quoted as saying, “  . . .  when the oncologist is away, he [Dr. Kalanithi] is treated as a problem and not a patient by an inexpert medical resident . . . .” At the time, Dr. Kalanithi was fatally ill with metastatic lung cancer.

With all the interest today in health issues by patients and their families many of these problems should have disappeared. Yet that’s not the case. The medical residents and their behavior that December night in front of my son-in-law and me falls right in the middle of this area.

Relational interaction with the patient is an integral part of a doctor’s job. And doctors, to be adequately trained, require a holistic medical education that goes beyond knowledge of clinical terms, illness symptoms, diagnoses and treatment. The interaction between doctor and patient is key. Nevertheless, it is left out more times than not.

Most medical students can and do receive early training in their medical school curriculum regarding doctor-patient relationships. Some researchers find, however, that while these young students are patient-centered in their outlook, when they move forward in their medical career they become less so. By the fourth year, they have become ” . . . more doctor-centered or paternalistic.” In other words, getting to know their patients becomes less of an issue. Science is foremost, I know, but the humanistic part of medicine is fundamental as well.

Since patients now have access to the internet and the relevant knowledge gleaned from that entity what, I still wonder, fosters medical student and doctor attitudes, both good and bad, toward their patients? I believe that it is imperative to find out.

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For full transparency: Suzann B. Goldstein was a PhD student at Rutgers, The State University of New Jersey. Her dissertation topic: Doctor-Patient-Proxy Relationships!

 
Editor: Edwin C. Goldstein

INFORMED CONSENT AND CANCER: The Contrast Between Henrietta Lacks and McKenna Wetzel

Posted By on December 14, 2015

A few weeks after I finished reading The Immortal Life of Henrietta Lacks, a 2010 biography by Rebecca Skloot, an article in the Newark Star-Ledger popped into my head. The article, about McKenna Claire Wetzel, and written by Sandy Kleffman in 2012, was headlined Killer Cells donated to find a cure for other youngsters. I saw a connection.

Henrietta Lacks, a 31-year-old African-American woman, died on October 4, 1951 after a documented eight months of a very aggressive, terribly painful cervical cancer. She was treated in the segregated ‘colored’ ward at Johns Hopkins Hospital in Baltimore, Maryland—the colored wards opened at Johns Hopkins in 1894 and were desegregated sometime after Henrietta died.

Henrietta’s cancer cells as well as some healthy cells were removed during a biopsy and cultured without her permission or her family’s. Dr. George Gey, the scientist at Johns Hopkins who was given the tissue samples, isolated a specific cell, named it HeLa after Henrietta’s first and last name and watched with amazement as the first human cells to grow outside the body proliferated endlessly. He made no money from the cells but shared the discovery with researchers who uncovered new scientific information that was related to, among other things, the first polio vaccine, cancer, aging, mosquito mating and an experimental launch into space.

Quickly commercialized and generating profits in the millions, the HeLa cell line benefited everyone who has ever swallowed anything more potent than an aspirin. Because there was no informed consent in 1951, Henrietta’s family knew nothing about the cells’ fame until 1973.

Important stuff? Certainly.

Years later, in August 2013, the Lacks family and the National Institutes of Health came to an agreement: a promise of acknowledgment wherever the HeLa cells were used in scientific papers as well as the appointment of two family members to serve on a six-member committee to regulate access to DNA code. Finally, after all those years, that raw issue seems to be resolved.

I know much less about little McKenna Wetzel. She was very young and therefore without a biography of note. All I know is that she loved soccer and was a bright, energetic and happy child. Her parents loved her dearly.

According to the Star-Ledger article and my own research, McKenna was seven years old when she was diagnosed with a diffuse intrinsic pontine glioma (DIPG), a particularly virulent and aggressive cancer that embeds in the brain stem. It is the second most common malignant brain tumor in school age children. Roughly four hundred cases of DIPG are diagnosed annually and almost all are fatal.

In 2011, six months after her initial diagnosis and two weeks shy of her eighth birthday, McKenna Claire Wetzel died. Shortly before her death and based on a kind neighbor’s suggestion, Dave and Kristine Wetzel made the decision—not the doctors!—to donate their daughter’s cells to Stanford University for research purposes. That caught my eye.

Although Henrietta’s cells were commonly used around the globe and in scientific papers published daily, McKenna’s donated cells were still only one of four that produced cell lines. As of this writing the investigators’ progress on mice creating DIPG-like tumors at some two dozen institutions had not yet been published.

And that brings up the issue of exactly what information is given to the patient. While not law, patient confidentiality and the Hippocratic Oath have been around since the late 400’s BCE. Patient-doctor relationships are sacrosanct. As they should be.

Informed consent is also not law. It is also not clearly understood.

Today, most institutions ask permission before surgery or any other procedure no matter how minor. The patient is given a form to sign that usually includes a line or more stating that any tissue removed may be used for “…education or research.” The Wetzels probably signed the form. Most of us have done the same.

John Moore signed it too. A plaintiff in an historic property rights battle, he was diagnosed with hairy cell leukemia in 1976. He signed an informed consent form for his surgery but eventually sued believing his doctor lied to him. He lost the case—in 1990, the Supreme Court of California ruled that a person’s discarded tissue and cells are not their property and can be commercialized. Moore appealed. The Court reversed, deciding that informed consent was inadequate because “ . . .  a reasonable patient would want to know that [his/her] physician’s professional judgment might be impaired by [his/her] independent economic interest.”

And so, new laws are created and old ones change. In this case, a controversy developed because storing blood and tissues for research does not legally require informed consent. Why not?

I believe in research and education, and I believe in the truth. One of Hippocrates’ lines—to “Calmly and adroitly conceal most things from the patients,” in general has become outdated. Physicians should tell the truth and they should do it in kindly fashion. (With emphasis on kindly!).

Truth is law, law is truth.

While not helpful for the Lacks family in 1951, today The Henrietta Lacks Foundation, founded by author Rebecca Skloot, helps to provide scholarship funds and health insurance to Henrietta’s descendants. The Foundation also benefits needy individuals who have made important contributions to scientific research, particularly those used without their knowledge or consent.

The McKenna Claire Wetzel Foundation raises funds for pediatric brain cancer and for researchers working in the field.

Both foundations are badly needed and both will someday help us find the truth.

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Editor: Edwin C. Goldstein

The Foundations

www.henriettalacksfoundation.org/

Henrietta Lacks had, in fact, a malignant adenocarcinoma, a specific type of cervical cancer, mistakenly diagnosed and discovered in 1970. In 1951 the treatment would have been the same.

www.mckennaclairefoundation.org/

In general, 1,658,370 new cancer cases are expected to be diagnosed in 2015. About 589,430 Americans are expected to die of cancer, or about 1,620 people per day. While billions are allocated to the research and fighting of cancer far more money is spent elsewhere.

To find out the various types of cancer that children are diagnosed with, please go to www.thevaleriefund.org . 

My next post will be on February 1, 2016. Happy New Year!

CANCER: Emperor of All Maladies

Posted By on November 15, 2015

crab

How many of you saw the television version of Cancer: Emperor of All Maladies? Hmmm. Well, let me tell those of you who didn’t see the documentary just a bit about it.

As you might know, both Valerie and Stacy, our only children, were caught in the web of cancer. Valerie was diagnosed with Ewing’s sarcoma, a bone cancer, at three and gone from us in 1976 at nine. Thirteen years after Valerie’s death, our surviving child, Stacy, at 25, was diagnosed with breast cancer and lost to us in 2001 when she was 37.

So, needless to say, I take umbrage with cancer.

But this post is not about our girls’ cancer at the time. It is about cancer over time.

And that brings us to Cancer: Emperor of All Maladies and the three-night special on PBS. The documentary, based on the Pulitzer prize-winning book by Mukherjee, an oncologist, researcher and author, was produced by Ken Burns, directed by Barak Goodman and shown on PBS from 3/30/2015 to 4/1/2015.

The film describes cancer from its very beginnings, around 400 BC, when the Greek word for the disease first arose: Karkinos, or crab.

Some have said the book is too long (it’s 470 pages plus acknowledgements, notes, glossary, photograph credits, selected bibliography and index!). It is long but it’s also very good and I liked it somewhat better than the film. Unlike an academic textbook, the language is clear and easily absorbed. It explains cancer through the doctors who worked in the field, from then to now, along with the accompanying research, the devastating failures and the remarkable breakthroughs. Interspersed throughout are the patients’ stories.

In 1898, for example, surgeons performed a distinctive type of radical breast cancer surgery: they cut deep into the chest, removed lymph nodes and enough other tissue so that the shoulder caved in making it impossible to move the arm forward or sideways. The process was terribly painful, miserably disfiguring and often fatal.

Over time, however, we’ve seen the changes. One specific development took place with the discovery of the gene Her-2 in a small subset of breast cancer. Soon after the discovery of Her-2 came the targeted drug Herceptin along with its ability to kill cancer cells. And that opened up the path to further achievement and successes for other types of breast cancer. Today, there is surgery, radiation, chemotherapy, hormonal therapy and various targeted therapies. Individually or in combination, they are likely to increase a person’s survival rate from approximately 17 to 30 years.

For childhood cancers, the survival rate has increased as well. There is now an over 80% chance of cure for ALL (acute lymphoblastic leukemia), Hodgkin’s disease and some large-cell aggressive lymphomas.

Progress has, indeed, been made.

Yet Mukherjee writes that this monstrous disease might be impossible to permanently erradicate since cancer has the ability for endless cell division. We know that cancer travels throughout the body; it assaults the various organs, damages the tissues and flouts countless drugs.

Still, toward the end of his last chapter Mukherjee gives us a credible way to look at this ancient adversary. He writes that cancer might not be cured but, instead, would be constrained by longer and longer remissions, through “treatment, resistance, recurrence and more treatment” (Mukherjee, 462). This would represent a different kind of win. No longer would it be an early death but instead a prolongation of life: in other words, death as it should be, in old age.

But let’s go further. It’s also possible that the scenario Mukherjee finally proposes is not quite right. After all, he’s talking about the future and we all know how the future changes with each passing year, or month or even a day. Today, we have in our labs (www.cinj.org/treatment/breast_oncology.html) a process which drills down to the tiniest details of molecular and genomic information personalized to each patient: it’s called precision medicine. So, perhaps there is a cure for cancer. I certainly want to believe that. Wouldn’t you?

I’m not fussy, though. I’ll take it either way, whether it’s Mukherjee’s reflections or my hopes.

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Editor: Edwin C. Goldstein

UNEXPECTED LIVES

Posted By on October 15, 2015

Hi Everyone:

It’s time for me to start blogging again and I am thrilled! Writing activates the mind, creates discipline and promotes happiness (I did read that somewhere.).

But first, since playing catch-up is a requirement, I’ll start with . . .

My memoir: finishing it was critical during the time away from you. I wrote and wrote and wrote and finally came up with my fourth draft and the new title, WHY US? One Mother’s Story. It is now spiraling through the ether searching for an agent.

If you’ve read About The Author, you’ll know that my husband Ed and I lost our only two children to cancer: Valerie, diagnosed with bone cancer at three and gone at nine and Stacy, diagnosed with breast cancer at 25 and gone at 37.

WHY US? One Mother’s Story begins with Valerie’s story, goes on to our establishment of The Valerie Fund, an organization that supports the comprehensive health care of children with cancer and blood disorders and then continues with Stacy’s story.

Side by side but hidden within the stories’ narrative about the girls is the bounce that Ed and I managed to develop over time, the bounce that is best described by a tennis ball that’s been used too often. The color has faded, the fluffy felt has worn off and, if you look closely, the ball is misshapen. It has changed yet it still bounces. So yes, we bounce but perhaps not as high.

The above is an abstract of my memoir. You’ll have to read the rest when I get an agent and he or she finds a publisher for the book—by the way, anyone out there know of a good agent? Any agent?

Ed and I moved forward, once more, after we lost our second child, Stacy. The Stacy Goldstein Symposium on Breast Cancer took place on a day in October 2004. Dr. Susan M. Love was our keynote speaker for the symposium. Two Stacy Goldstein fellowships were awarded in 2006 to two medical scientists at the Rutgers Cancer Institute of New Jersey. And when we were comfortable with that, the establishment of the Stacy Goldstein Breast Cancer Center at the Rutgers Cancer Institute of New Jersey for patient care and research; that took place three years later in June 2009.

Under the circumstances, I don’t think any of you will be surprised, if you read from time to time blog posts connected to cancer, blood disorders or other related health problems. But first, a little light in the day.

To that end, we go to the post . . .

 BETTER THAN COOKING!

depositphotos_26661991-Art-white-wine-on-the-summer-sea-background[1]

And so I’m telling you, people, I’m not cooking again. Do you feel the same? No more cooking? Ever? Well then, please join me in a glass of wine.

To be fully transparent, I do cook. Occasionally. When I feel like it. The last time was for the first night’s Seder of Passover 2013 (the holiday commemorates the liberation of the Israelites from Egyptian slavery.). I had 26 family members and friends that night. Half-way through the preparation, however, I said, “Why am I doing this? I’m tired of washing vegetables at the sink, stirring the pan on the cook-top and running to the market for things I’d forgotten. And yes, my legs hurt.” Oh, too late, Sue. Too late.

The Passover dinner was wonderful. Every year it’s wonderful. I loved it. I’m not doing it again. This is not a surprise to anyone who knows me. I’ve simply stopped cooking. I don’t know how happy Ed is but I’m wild with excitement!

For every previous Passover, I insisted on doing all the cooking myself. That includes the brisket, the honeyed chicken, the potato pudding, the veggies, the dessert cookies and whatever else it took. I accepted no help from anyone except Ed who took care of the chopping. He was good at it. Oh, the only item that someone brought was our neice Linda, before she and husband Bobby moved to Florida; they’d bring the soup. It was wonderful. I made the matzoh balls. I think. I don’t remember.

In any event, I was able to say to everyone, for every Passover, that I did it all. It was my way to remind the guests that I could, indeed, cook and that I did it for many years. As for the days after the Passover dinner, Ed and I ate at home. The leftovers were ingested with delight. And, I was done.

Now, we go to the home of friends or family for their terrific Passover dinners. I help in their kitchen a bit. I joke a little. I sit when told to, eat when told to and listen to everyone talk at once. It’s great.

So, Passover 2013, was my finale. When I tell some of my friends that I’m no longer cooking they look at me in surprise. They say they get tired of eating out. And that’s fine. I have no problem with that. For them. Personally, I never get tired of restaurant food or any food that’s outside of my kitchen.

Oh, wait. Before I forget, I did cook six dinners for my husband after that 2013 Passover. Real dinners: dinners that he’d never eaten before. Neither had I. It was risky, I know. I got roped into it because of our new kitchen.

A little back story. I’ve been wanting a new refrigerator for years: mine was quite small. As things happen, one Sunday afternoon sitting in the kitchen with friends of ours, Kenneth and Bill—Kenneth is an interior designer and Bill is an architect—I mentioned my refrigerator. And before Ed and I knew it, Kenneth had designed a spanking new, beautiful kitchen which included a new, beautiful fridge.

Ed was happy with the kitchen project. Shocked but happy. He was the boss and soon began calling, in the name of  building that new kitchen, all the people who had worked for him in the past. It brought back memories of the good old days at E(d) & S(ue) Kitchens. In any event, the kitchen is done. It looks terrific, given that it’s generally untouched.

Despite it’s untouchability, though, Ed decided– shortly after the new kitchen was installed–that I owed him six dinners, something never before mentioned! Six dinners? It did sound like fun though and, for some crazy reason, I decided to do it. I didn’t know that Ed meant six dinners per year. Oh no. No. NO. I stood my ground and six dinners it was. FOREVER.

My cooking is finished. We go out to a restaurant–I’m not fussy where–and we enjoy ourselves, talk to each other quietly and eat and drink our wine. I think it’s amazing. I believe Ed does too, but I’m not sure. Maybe.

Again, I’m glad to be back. Would you now like to join me in that glass of wine?

See you next month . . .

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Spring Blossoms

Posted By on May 1, 2012

Hi Dear Readers:

A blossom of information has already bloomed and awaits your attention. The Valerie Fund, an organization that supports comprehensive health care for children with cancer and blood disorders in New Jersey and New York City, has been serving sick kids and their families for over 35 years. To observe the occasion, The Valerie Fund’s VOICES was published.

VOICES is a book filled with astoundingly wonderful photos of our resilient Valerie Fund children, their poems, and their artwork. Insightful quotes by the children’s parents and siblings add to the book’s power.

VOICES, a team effort first conceived by Bunny Flanders of The Valerie Fund, and involving writer/editor Rhonda Silver, graphic designer Mary Tedesco, and me, is now on sale at The Valerie Fund’s website http://www.thevaleriefund.org. Please click on ‘Gift Shop’ at the top of the organization’s web page and take a look. This is truly a book to cherish.

On a far different note, another spring season blossoms for me with fresh writing possibilities and some computer clean-up tasks. These kinds of blossomings, though, require a sabbatical from my blog for several months. I am confident, however, that I will see more flowering from the fruits of my labor,

  • And since hope springs eternal, in mid-May with the help of an editor, I will begin restructuring my memoir, Unexpected Lives (working title), in a renewed effort to find a book publisher.
  • I am working on a second book, Breathless: Resilient Mothers in Challenged Families (working title), with my co-authors Cherie Castellano and Mary Beth Walsh about resilience in Moms with special needs children. These children run the gamut from autism to cancer to cerebral palsy and every serious illness in between. By the way, our book on resilience is still looking for additional submissions. If you know a mom with a special needs child who would like to submit a chapter about her resilience, please contact me.
  • The third project involves my website http://www.suzannbgoldstein.com. It needs to be spruced up: more content will be added and the site’s maneuverability improved. The web master will do most of the work but I’ll attempt to be a bit more courageous and do some of that maneuvering myself.

I will try to keep you all updated as to my progress. In any event, keep watching. I’ll be back!

Suzann

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Suzann B. Goldstein lives with her husband Ed in the Watchung Mountains of New Jersey. Suzann and Ed established The Valerie Fund, an organization that supports children with cancer and blood disorders in New Jersey and in New York City. Suzann has her Master of Arts degree in sociology with a sub-specialty in medical sociolgogy from Rutgers University, is a published author and poet, and has just recently completed her memoir, Unexpected Lives.