Chapter 4–Coping, Quirks and Queries

Valerie has cancer.

All at once I forgot about Ed’s reaction to my tears; normally, that would have been eating at me. But his biting behavior in the diner really didn’t matter anymore. I knew he was as shocked, as upset, as I was. And his conduct, I’m sure, was as outrageous as mine probably was.

Everything, all the problems, emotional, financial, and otherwise, fell into a bleak hole. Val’s illness and her return to good health became the main concern for both of us. But first, I had to get over the fact of her disease. My God! Little kids don’t get cancer—And forty-year-old Mothers don’t die either, do they, Sue?—Okay. Okay. Just calm down. We’ll fight this horror. Ed and I will fight it. And the four of us will bounce back from this ordeal in one piece. We will be fine!!

Dr. Wolff became our pediatric oncologist and I didn’t like him. I didn’t like Dr. Gagnon, the pediatric orthopedist, either. What’s more, I didn’t like anything connected to the field of pediatric oncology. I was indiscriminate: I didn’t like the medical tests, the chemotherapies, the doctors, all the different specialists and the scientific trials. Because my daughter needed results. Right now!

I couldn’t let any of the medical people know my true feelings, though. How could I? We needed help. Since the cancer hadn’t yet been identified, Ed and I allowed the specialists to do combat for us. All we could do was stand helplessly by, hold Valerie’s hand and love her, as always, totally.

“It looks like a neuroblastoma,” said Dr. Wolff in his usual monotone. “That’s a solid tumor mostly diagnosed in infants and children and it’s found in softer tissue like the lining of the abdominal cavity.” Dr. Wolff also thought that the malignancy in Val’s leg was metastatic and had spread from another part of her body. He spent a lot of time on various tests searching for the primary site, the original area of tumor development.

Stretching the time between biopsy and treatment even further were elaborate tests that could not be analyzed at Babies. These were sent out to research facilities in other parts of the country. I knew that the tests were necessary but treatment had not yet begun and my daughter was not yet on the path to recovery.

Take the catecholamines, a twenty-four hour urine test. For that one, I tracked my three-year-old like a secret agent, sneaking after her throughout the day, a special plastic container in my hand. I figured that every drop of urine collected was a step closer to a healthy child

What a process. Valerie still had a cast on her right leg to protect it from the damage caused by the tumor and the biopsy. She was not in any pain and the cast from the outset had never stopped her. But I did. I interrupted my daughter’s play, her TV time, her mealtimes and her sleep. I bothered her about peeing so often that my sweet, humorous little girl ended up hollering at me. “NO. NO. NO, Mommy. I don’t have to go!”

Per doctor’s orders, Val had to wear a special plastic bag with openings for her legs instead of panties, and over that, a plastic diaper. “Just in case,” I told her. That brought forth another shout. “I’m not a baby, Mommy!”

I checked her continuously. Neither one of us got much sleep that night. Both mother and daughter were inordinately grateful to see daybreak.

The entire sample had to be shipped to California. We waited three weeks for that analysis.

All along, the pathology, the special nature of the tumor, had been uncertain. On the list of possibilities was Ewing’s sarcoma, a rare bone tumor that occurs most often in adolescent males. As a rule, Ewing’s affects the long bones of the legs, that is, the femur or thigh bone and the tibia or shin bone. It was far down on the list and difficult to distinguish from similar tumors. The lab in California took an agonizing two months to determine the diagnosis.

The call came the beginning of March 1970. The primary site was in Valerie’s right leg and was not a neuroblastoma. It was, in fact, Ewing’s sarcoma. While Val didn’t fit the tumor pattern of an adolescent male it was Ewing’s with no sign of metastasis, according to the test results. Sure, they have to add that . . . “according to the test results”. There’s always some kind of caution in medical discussions. So much caution it’s confusing. I’m happy it’s nowhere else but—

Two days later, Ed and I were back in Dr. Wolff’s office; Valerie was next door in a small playroom watching TV. He was sitting at his desk, the medical report in his hand.  Dr. Wolff told us the biopsy wound had healed, the cast had just come off, the diagnosis made and treatment would begin: a multi-chemical, twice-monthly injection with reactions that would include vomiting, constipation, hair loss, lack of appetite and more. His list was long and scary. The professional wall is in place; I can hear it in his voice and I can’t blame him. What a job.

That first treatment was a shock, as were all the rest of the injections, I might add—none much different from the first. A nurse had come into the room as Dr. Wolff lifted Val onto the examining table. I couldn’t get close enough to hold her hand but I could see her face. As the doctor searched for a good vein Val watched suspiciously. The needle went in and my daughter howled. Then suddenly she stopped crying. Val looked surprised but the doctor only nodded. “The mixture often leaves a bad taste in the mouth; if it’s going to happen, it will happen quickly.” He didn’t tell us that! Val started crying again.

Neither Ed nor I were able to calm her—we were too far away—but the nurse tried. My God. She’s only three! Finally, when the injection was over, I held Valerie tight until her crying stopped and then brought her down from the table.

With our daughter back in her stroller and my eyes nervously on the doctor, I said, “How does a Ewing’s begin, Dr. Wolff? Where does it come from?”

He shrugged. “A tumor is a mass of new tissue with no physiological function. The mass goes haywire and invades the surrounding tissues.” He looked back down at the report in his hand.

That wasn’t enough for me. “I mean, what triggers it?” Shifting in his chair, Dr. Wolff shrugged again. I wanted to understand the unknown—what caused it to grow in the first place—but it sounded like I was cross-examining him. I hadn’t intended that. And it was clear that he didn’t like it. Oh boy. Be careful, Sue. Remember Dr. Gagnon; he didn’t like being quizzed either.

I stared at Wolff, then looked away. O God. He frightens me. I should watch my mouth. He’s too critical to Val’s health.

Ed and I avoided any talk about Val’s cancer that day. If given the chance, I would have discussed it endlessly but my husband’s frozen face and averted eyes offered no encouragement. Would I feel less alone if Ed and I talked about it? Or would I fall apart? Would he? Silence seems to follow me. Nobody would talk to me about my mother and now my husband won’t talk to me about Valerie, about her cancer. The dry taste of soot filled my mouth.

But we had to discuss Valerie’s illness with others. Who with? We decided on my dad, Ed’s two brothers, his one sister and two good friends, Phyllis and Isa and their husbands, Don and Sandy, but not Ed’s mom. Her heart problems were a permanent barrier to the truth about her granddaughter.

No one else would know. We were afraid if other adults knew what Val’s illness was, they would talk about it in front of their children. In turn, the children would say something to Val or Stacy and that’s not what we wanted. I wasn’t certain, though, who would be harmed more, the girls or Ed and me.

We discussed it briefly. Ed said, “If we tell the girls that it’s cancer, they’ll tell their friends who, maybe, would say cruel things. I don’t want that.”

“Well, I don’t either, Ed. But what if it comes out and hurts them in a way we can’t understand right now?”

“That won’t happen. They just can’t know, period. They’re too young.”

“You can’t know that it won’t happen!” I yelled, my thoughts erratic and scary.

The discussion ended with a bit of rancor on both our parts. But it was over. What, in fact, would happen was truly unknown to us. Nevertheless, it was time to talk to the girls.

“Val, come here, sweetheart. You, too, Stacy. Daddy and I want to talk to you.”

I pulled Valerie onto my lap, put my arm around Stacy and, trying hard to keep my voice calm, said to them, “Val has some bad cells in her leg and will have to take medicine for a while. We’ll go to Babies Hospital for the medicine but then we’ll come back home.” Valerie looked pale and laid her head on my shoulder but Stacy asked, “What kind of medicine, Mommy? Like cough medicine?” I pulled her closer and kissed her forehead, “Yes, Pussy Cat.” Ed kissed both girls but remained silent. I put Val down but she stayed close to me. Stacy ran off to her room to play.

Eventually, Val went off to watch television, and I said, with as much resentment as I could muster, “Thanks for the help, Ed.” He was dismissive, saying quietly, “You did fine.” My husband then turned and went downstairs to his office, his retreat.

The injections, beginning that first week, continued every other week after that. Poor Valerie, poor Mommy, poor Daddy, poor Stacy. And yes, Dr. Wolff’s list of side effects was on target: vomiting, hair loss and other chemical reactions that I thankfully can’t remember.

Constipation was another norm for chemotherapy and for that Val was prescribed Colace, an over-the-counter liquid stool softener. However, my daughter had diarrhea and a strange chemical odor that followed after each shot. Over a period of several months I’d say to the doctor, “Valerie’s not constipated, Doctor Wolff. But she does have diarrhea.”

His response? “Please continue with the Colace, Mrs. Goldstein. She needs it.” And so I did, for a while, but then when I recognized that diarrhea was Val’s personal reaction and not constipation, I discontinued it. She didn’t need any more unnecessary meds in her little body. Says Dr. Sue, with trepidation: but who knew more, the doctor who saw her for one-half hour every other week or the mother who took care of her twenty-four hours a day?

The hair loss didn’t bother Val. Her lovely baby hair came out in large clumps on her pillow and I whisked it away first thing in the morning before she could see it. Her new wig, however, was something else. Not thinking that she was only three and too young to worry about a new mop on top of her head, I took her to my beauty parlor for a very short cut.  Valerie thought her new wig was something to play with. I tried to tell her, gently, that it was not a toy but she didn’t pay attention.

She combed that wig constantly, put it on all her dolls’ heads and had a fine time. Then she would say, “Look, Mommy, see how pretty!” She never, ever wore it. Oh, well.

From time to time, once the treatments began, Stacy would ask, “Mommy, what’s wrong with Valerie? Why is she always throwing up? Yucky—.”

And so I’d remind her, “Val has some bad cells in her leg, honey, like an infection. You know, when you get a bad cold or when you have an earache, and the doctor gives you medicine to take? Well, it’s the same thing. We have to get rid of those bad cells; the medicine will do that, but it’ll take a while.” My God. They’re babies. Is this really the best way?

When she could, my friend Phyllis would drive into New York with Val and me, especially in mid-winter. I’d park two blocks away in a parking garage and she and I, with Val in her stroller, would walk to the hospital. When necessary, we’d pick the stroller up and carry it over huge mounds of snow at the sides of the New York streets. From time to time I’d shout out in alarm, “Watch it, Phyll. Valerie’s going to fall out!” Val would laugh gleefully and, soon, so would we as we climbed over those huge drifts on a sunny day in Manhattan.

On the way back to New Jersey after each injection, mostly with Ed, Val would begin vomiting. I’d hold her forehead with one hand and in the other hand, just barely cling to a large pot. We learned to carry that pot and a box of tissues in the car at all times.  I remember that my grandmother held my forehead whenever I vomited. Did it help? Who knows? Did my mother do that for me?

What about my other daughter back at our home? Poor Stacy. Baby sitters were not a problem, so I thought. She’d go to a neighbor’s house or I’d hire someone. I did wonder, however, about the many stomach aches she was beginning to have. I tried not to think too much about that. I had no mother so how do I know that I’m doing things right? Okay . . . stop thinking about my mother!

When Val was able to go back to preschool, I’d say when asked, “My daughter has a bone infection. She’ll be fine once it’s cleared up.” I never, ever, used the word cancer. I had become a believer like my husband.

No one suggested that this wasn’t a good way to handle things, that lying would cause additional pressures. Sure, lying was inherently bad but our concerns overrode the truth.

We had to protect both of our girls. That was our job.

So lie we did. It was our decision. And we lived by it.


Editor: Edwin C. Goldstein