FIGHTING BACK: One Mother’s Story–Chapter Seven

Posted By on July 17, 2017

After three inpatient days at Babies Hospital searching for signs of cancer and finding none, we took Valerie home. One surgical biopsy, twenty-six sessions of radiation and two years of chemotherapy were over. I believed Valerie was made whole, liberated, renewed.

Negative! Negative! Negative!

“No sign of cancer,” the doctors said. “We can’t say with any certainty that Valerie’s cancer is gone, Mrs. Goldstein, that she’s cured. We just don’t know that. We can only tell you what we don’t see, that the various lab tests are now negative. She’s in remission.” There they go again, being clear as mud! But who cares? Valerie’s going home . . . no more hospital overnights! Of course, Suzann was more cautious but I didn’t listen to her.

In the beginning, I had a hard time accepting the word ‘negative’ as ‘positive’. But the specialists explained that negative was good and positive was bad. I looked up the definition in a dictionary. Positive meant optimistic or confident. That was definition number one, and my only understanding of the term. But further down the word list I saw it also meant showing the presence of disease. Okay. That’s what the docs are talking about. I fixed firmly in my mind, for all time, that positive could indeed be bad and negative good. Like Alice, I was in the middle of an insane tea party. Except I stayed there and tried working through the riddles, soon discovering that there were rarely straightforward answers.

Two years ago, when my family and I began our trek through the maze of medical science I came face to face with its language. It was pure torture to my neophyte tongue, but I learned fast. I had to. So did Ed.

For us, decoding the doctors’ medspeak suggested, at the least, that Valerie’s bone cancer was nowhere in sight. We were leaving or better yet bolting from the pediatric oncology floor and returning to our normal life in North Plainfield, New Jersey. What a sense of elation that was. All at once my second-born had been restored. I trusted that she was a healthy child once more.

I grinned uncontrollably that night and willed the hospital elevator to zoom up its shaft to us. A more restrained Ed smiled at me in agreement. Valerie, ignoring both of us, played hopscotch on the worn grayish floor. Before turning back to watch her, Ed poked my arm, “Stop jiggling, Sue. Please. You’re making me crazy.” “I feel crazy, Eddie. Don’t you?” but my tapping foot quieted. I was impatient for transport out of this unconventional and frightening universe, impatient to return to a world where I believed my girls, my husband and I were safe. Just like everyone else.

As we waited, we heard a deep male voice rumble from down the hall, “Valerie, aren’t you going to give me a hug and kiss good-bye?” It was her pediatric oncologist, Dr. Wolff. He was standing at the nurses’ station.

Arms crossed, back resting against a doorjamb, he wore, as always, a somber dark gray suit. A white shirt and forgettable tie completed the outfit. His stocky build, strong and vigorous-looking, was capped by a clean-shaven face and carbon-black hair combed thin and flat against a large head. He was as well-groomed as if the workday had just begun. He dresses like an undertaker. I can’t stand it. Wolff, brighten up!

As a rule, Dr. Wolff was reserved and undemonstrative, his professional wall raised high to the sky. But his dedication to pediatric oncology, a specialty not known for its successes, was unmistakable. Poor guy; Wolff’s no free and easy spirit. Wonder what he’s like at home?

A few weeks earlier, in his office—no injection this time—my affectionate, amiable Valerie rejected the doctor’s attempt to talk to her. “What are you coloring there, Valerie?” he said, and without looking up or saying anything, Val studiously chose crayons for her picture. I glanced at her, then at him, shrugged and plastered a wry ‘that’s kids’ smile on my face. It was obvious, though. My daughter wasn’t buying his change of behavior, not then anyway. She knew that his office was a place for painful shots and bewildering adult talk.

But at his shout that night in the hallway, Val swiveled in place and skipped toward him. An assortment of adult eyes tracked her uneven path. The bone tumor, the biopsy and subsequent radiation had all done noticeable damage to her right leg and made precarious any sudden movements on her part.

Giving her doctor a hug, she forgave him for his past deeds: those semi-monthly injections that generated throat-burning tears, the harsh taste of chemicals in her mouth and the many days of vomiting and inertia that followed. “Thanks, Valerie,” Dr. Wolff said to her back as she promptly turned and skipped back to us.

At the elevator, when its doors finally opened, Ed and I waved hastily to the doctor and staff, grabbed Valerie and dashed away.

Since late 1969 and the shock of her cancer diagnosis, Val’s daily activities and every facet of our family’s life took an impromptu leave of absence. For instance, an upset stomach after an injection was contagious; queasiness or more was a symptom most of our immediate family developed every time Val threw up. That large pot and box of tissues followed us everywhere.

Discipline softened. Who had the heart to holler or punish? If Val or Stacy, or both, were naughty, I’d send them to their rooms. It was a Mommy-ruse. The kids complained but spent the isolation time playing happily and quietly with their toys. Since I sat out the brief silence trying to relax, we all benefitted.

The fallout from Val’s illness spread to our family’s regular outings, too. Those had all but vanished. Disappointment and the accusation of “Mommy, you promised!” were familiar cries, but degree of nausea and chemo-induced bellyaches made plans for child-based entertainment erratic.

Still, the children, laughing and yelling their way through most days—when they weren’t crying or fighting—seemed to pay little mind to chemotherapy and doctors’ appointments. These were mere distractions to be dealt with as soon as possible. I followed in their raucous wake but my pace, I must admit, was less than swift.

I remember little more about those first two years except that I had become habituated to sleepless nights, stress and an irritable, stomach-churning tightness.

The days had fallen into a loose order of sorts. Ed sold his kitchen cabinets through E&S, Inc., and I took care of all things domestic and helped out in the business. Every other week we left Stacy with a babysitter and drove Valerie into New York for her chemotherapy. During those two years, Suzann handled the big stuff and Sue worried about the smaller issues.

After each injection, for example, when the side effects wore off and Val felt better, I’d begin to focus on things like her limp. She limped before the biopsy when her leg first started to bother her, and as time passed, continued to walk slightly lopsided because the growth in that leg had slowed. And that’s what I want to worry about; that’s only what I’m going to worry about, okay?

One day I phoned Dr. Gagnon, the orthopedist. “Valerie still limps, Doctor, and I worry about the future. Will her limp get worse?” His reply to me was abrupt. “Mrs. Goldstein, you have problems far more serious than Valerie’s limp.”

He stunned me with his response and cut off any further queries I might have had. I never forgot that. I never forgave him.

By asking questions that he thought were unimportant Gagnon forced me to confront the unimaginable, the thing that I hid from, the part of me that was usually protected. Suzann, my not-quite-perfect Suzann, where are you?

And I was astonished. How could Gagnon think I needed reminding about Val’s illness? Why doesn’t he have some insight? I can’t talk about Valerie’s cancer. I can’t. I’m afraid of breaking apart. I only want to think about her limp and the built-up, thickened sole the shoemaker puts on at the bottom of her right shoe. My God. He puts one on every few months! It’s an indication of how slowly her right leg is growing. That’s all I want to talk to him about. He’s her orthopedist, for crying out loud, not her oncologist. I don’t like him. I never liked him. And on top of that, I’m told not to sweat the small stuff? Oh yeah? Well, the small stuff’s easier to sweat. Tell ‘em that!

Okay. Dr. Gagnon didn’t deal well with my issues. Noticeably so. But how could he when I wasn’t dealing well with them either? I knew he wasn’t a psychiatrist or a magician for that matter. He couldn’t read my mind and didn’t have time to talk about his young patient. He was a busy man and, in retrospect, maybe my questions were a bit naive, perhaps even dumb.

Trying to rationalize away my reaction I thought, maybe, I’d gone overboard: Gagnon’s not aware of how he sounds; I’d misunderstood him. Blah, blah, blah. Still, I remained upset, my dislike for him thriving in an emotional petri dish that was mine alone. Although Ed no longer liked the orthopedist the way he once did he was not as easily undone.
Gagnon, however, not only lacked empathy, he was inflexible as well. I had just turned thirty-five, Ed was thirty-seven and our business was just a few years old. Monetary concerns soared and added to our fears. As if that were possible! To remedy that, a local doctor suggested we talk to Gagnon about reducing his bill.

Money! Money! Money!

Pride put aside, Ed asked him, “Is there some way you can lower your fee? We don’t have any medical insurance.” It was a hard question for him to ask, a hard question for anyone, and my husband reddened at the need for it. But Dr. Gagnon was unyielding in his finances as well as in his compassion. He gave his answer with a quick shake of his head: “You can pay the fee out monthly. That will be fine.” It’s fine for him, that creep.

So, no reduction in Gagnon’s charges and a payment struggle that lasted more than two years. Personally? I would have taken several decades. I’m angry. And I’ve turned into a nervous wreck. I rely on others to take care of Stacy and I can’t protect Val from the awful things that are happening to her. Hey, calm down. Deal with it, said Suzann.

But now, Val’s chemo and all the rest were behind us. She would have an ordinary youngster’s life again, a life brimming with kiddy issues: birthday parties, nursery school, play dates, some scrapes and tears but mostly fun and laughter. You bet! Of course, she’d have doctors’ exams, blood tests, and X-rays every few months, and that’s out of the ordinary when compared to other little kids. I knew we were not home free. But we were close. Real close.

Although I spent the next year watching Valerie limp and talking infrequently but politely to Dr. Gagnon—he was, after all, one of my daughter’s doctors—I also saw that she was putting weight back on. My child had regained her appetite. She was eating better, not great but better. And her cheeks were, once again, a soft, chubby pink, the glowing proof of her good health.

I called Phyllis. “Phyll, what are you and Don doing Saturday night? Maybe the four of us can go to a movie. It’s been way too long.” I could relax with Phyllis. She and Isa knew all about Valerie. What I knew they knew. And both of them, my two best pals, would take care of Stacy when needed. No questions asked. They both bore the brunt of my anxieties regarding Val and her sister.

That year went by quickly. Life seemed under control. Well . . .  as much as a family with two little kids can be controlled.

“Mommy,” hollered Valerie, “Stacy took my Raggedy Anne.” “Mom, I did not. She gave her to me,” Stacy hollered back, “and she can have it. Who wants her Raggedy Anne anyway!” Stacy returned—maybe threw is a better word—the doll to Val and, in three seconds, they were playing together again.

I shook my head and grinned. My girls . . .

I had rediscovered the good humor side of life. And the world was a joyful place for me and mine once more.

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About the author

When not at her desk writing, Suzann can be found walking the hills of her neighborhood, working for her charities and lunching with friends. She is rarely found in the kitchen.

Comments

14 Responses to “FIGHTING BACK: One Mother’s Story–Chapter Seven”

  1. Stephen Taylor says:

    I loved it. I was drawn into your life from the beginning of the chapter. I felt like I was there. Touching and moving. I’m not a technical writer. I can only comment on how it felt. The way the chapter ended it leaves me wanting more and looking forward to the next chapter. Very nicely done. Thanks for sharing.

  2. Amy says:

    As always, your writing is compelling. I couldn’t believe the way Dr. Gagnon treated you, while you had enough troubles going on. As a medical editor and having known your girls, I am interested in your story. Your bond with Ed is incredible to have survived everything you went through. Your strength is admirable.

  3. It was very interesting reading about the ‘bedside’ manner, I can relate to that…when Ralph was diagnosed with Anal Squamous Cancer last summer…..the Dr…whom we call Dr.Gloom and Doom at MSK in Basking Ridge, a young woman from India, she said to him, “There is no hope for you, you will need to be on Chemo the rest of your life after all you are already 87 yrs. old.” Ralph Said….”Oh no, I want to meet with the Dr. in NYC at MSK…to see about surgery” thus began our journey as advocates..for Ralph…..and it has not ended….recently they found a pin-prick spot on his liver….right away, she wanted to do a biopsy…..here again I relate to the negative/positive terminology……once again we trucked into MSK/NYC, met with a gerontology/oncologist, who explained that the ‘spot’ was so small, a biopsy could be a ‘false-negative’ because they would not be able to get a piece of tissue….thus he recommended to do another PET Scan to see if there were any change….he spent 1.5 hrs. talking with us, like he had all the time in the world, and went into his philosophy of how to consider all aspects of treating the elderly, the need to consider all aspects of Ralph’s health challenges and what to consider in terms of his quality of life….thus we are in a wait and see mode….all that you have written speaks to a tough journey. For a child, it is terrible and for someone in his golden years it is terrible….I lay awake at night unable to sleep….so I read…..Keep in touch.

  4. Hilda Pressma says:

    I love the image of Valerie hopping over to give Dr Wolf a hug

  5. Bonnie Plotkin says:

    My first reaction to this piece is “screw the doctor-what a shit he was”. I would like to think that others would have been more sympathetic and understanding. As to the rest of the
    writing, I always love your details and emotions, an how good and honest you are when sharing them.

  6. Bobby Bresler says:

    You write so well, about all the complicated feelings, that I feel them with you. Thanks Suzann., Love, Bobby

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