Chapter 8–The House that Ed Built
Valerie and her radiation-damaged leg needed a new home. Her limp was worsening and our North Plainfield bi-level had two sets of stairs. Each time Val went downstairs to play in the rec room, I had to trust to the gods that she wouldn’t trip. We needed a house with fewer or no steps.
In addition, our North Plainfield home had taken more than enough hits. After each stormy rainfall, the lovely diminutive brook bordering our backyard turned into a raging river, overflowed its banks and filled our downstairs with sludgy water. I saw our garbage pail plus several cartons of books from the garage floating in the street during the last storm.
At any rate, we were finally done with our bi-level and sold it knowing that the Army Corps of Engineers was, at long last, about to deepen the brook. I felt a sad little twitch, though, when I said goodbye for the last time. It was a bright sunny day in August with no stormy weather to ruin the picture.
We purchased a beautiful lot, began construction and the girls personalized the spot by picking out small rocks, writing their names on them and throwing the rocks into the foundation hole. “Mommy, I want to throw another one in. Can I?” said Val. “Of course, Valerie. Throw as many as you want.” Then Stacy asked, “Can I too, Mom?”
“You both can, kids. Go to it!” Ed and I both said in unison.
The first step in building our ranch home had begun.
Our house was partially framed when Valerie’s leg became problematic again. She was six years old. The new house excitement disappeared.
Her cancer had been nowhere in sight for one year. But now, her voice thickening with tears, Valerie said, “It hurts, Mommy,” and she touched the biopsy scar centered on her lower right leg. I pulled her onto my lap and kissed the top of her head. “Let’s see if I can make it better, sweetheart.”
Gingerly stroking the sore spot, I imagined the cause was any of a short list of common Val woes: maybe she had been at a friend’s house and banged her leg or she fell in school and didn’t tell me. I refused to consider anything more serious. It’s nothing. The leg is just sensitive. Suzann concurred.
A few days passed and Val complained again, the tears now spilling down her cheeks. Denial out the window, I called Dr. Wolff at Babies Hospital. He said he would order hospital-based tests for Valerie later that morning to give us time to get into New York. Wolff would see her in the afternoon. I called Ed at work and told him about our last-minute appointment. It would be a rush and we’d have to wait a bit before we saw him . . . but we could do it.
Grateful that Stacy had already left for school and her ‘why’ questions temporarily avoided, I quickly gathered snacks, a few books and a deck of cards—Val loved Go Fish. Those few things taken care of, I began to move restlessly through the house picking up a set of jacks from the living room floor, straightening bedspreads and marking the moments till Ed came home.
Valerie, already bundled into her winter clothes, was outside fiddling with her three-wheeler when my husband beeped his arrival. It was time to go. Unusually testy, Val pushed Ed’s hands away and crawled into her car seat without the normal boost. “I can do it myself, Daddy,” she said.
The car radio was tuned to a soft pop station, but with our thoughts on the diagnostic testing to come, neither Ed nor I listened. We knew the routine facing us and considered ourselves professionals wise to the medical system as well as to our daughter’s needs. But our attempts to smooth the way for her were often ignored.
A case in point: I’d say to a lab technician, “It’s easier to draw blood from her left arm. Please, don’t even bother with the right one, the veins there don’t work anymore and, please, don’t do the hand. That hurts too much.”
“The right one has a real good vein, ma’am. We’ll try that first,” one of the technicians would say.
While they generally stayed away from her hands, Val’s right arm was punctured over and over until she’d start to cry, shouting “NO. NO. NO.” Only then did they switch to the left arm.
In much the same way, many doctors relied on their text books rather than on a mother’s knowledge of her youngster. “The chemo gives her diarrhea,” I’d tell them over and over, each time with more emphasis, “It doesn’t constipate her like it does most kids.” Nevertheless, one specialist or another would insist on continuing Colace, the medicine to relieve constipation.
Those thoughts were soon pushed aside as Valerie began to deliver a dramatic reading of her favorite book, Berenstain’s ‘The Bear Detectives and The Case of the Missing Pumpkin’. “O.K. thief! You’ve munched your last. Your pumpkin stealing days are past,” barked Val. Huge grins lit our faces as we listened to her noisy child’s voice.
An hour later, at Babies, Ed and I took Val for a bone scan and chest X-ray. Following that, we went to the lab for a variety of blood tests. Afterwards, we headed to the drab and stuffy cafeteria for lunch, the highlight of Valerie’s day even though she was a rotten eater.
She made her choices at the wide, glass-enclosed counters, took her time, thought hard and without fail ordered a carton of chocolate milk and a tuna fish sandwich on white bread. She’d stand on tiptoes and craning her neck would tell the servers behind the counter, “No lettuce or tomato, please.” She never wavered and never finished the milk or the sandwich. “I’m full, Mommy.” That day was no exception.
After lunch, Ed and I each held a small hand and went to see Dr. Wolff. Val, our little leader, pulled us toward the physicians’ reception area, a large room filled with wooden chairs and some tables. I knew she sensed something was wrong. How could she not?
Ed walked hurriedly, his eyes shifting back and forth, head forward and down, shoulders thrust upward toward his chin. Okay, said Suzann. No help there. Don’t let Val see you upset. Clutching her hand tightly, I struggled to loosen the muscles that always clenched before we saw the oncologist.
At last, in his office, we watched as the doctor lifted Valerie to the examining table. He rested a large meaty hand on her shin, his fingers covering the biopsy site. “Feel how warm it is,” Dr. Wolff said, looking at me. I put my hand delicately on the shallow two-inch groove between her right knee and ankle and lightly rubbed back and forth. Except I didn’t want to feel the warmth. I knew what it meant. We’d been through this before when Valerie first started falling three arduous years ago.
It had been one year, exactly, since the doctors had used the word ‘remission’.
Bringing her down from the table, Dr. Wolff touched Val on the head and sent her into the small playroom next to his office to watch TV. The familiar part of our day was over. We had returned, once more, to frightened parents status: that is, parents of children with cancer waiting for the unknown.
Without saying a word, Dr. Wolff walked to his desk and sat down. We trailed him there, taking our accustomed places on the other side of the desk and sat in the two wooden armchairs that seemed to be waiting just for us. He picked up some X-rays, looked at them, looked at us and came right to the point. “The tumor has recurred but is apparently nowhere else in Val’s body, only in the right leg.” He sighed, and then continued, “After a few more tests, we’ll know, and the reports will confirm, that the best way to treat it is to amputate.”
“What?” I was certain I hadn’t heard him. “What did you say, doctor?”
Looking from Ed to Dr. Wolff and back to Ed, I saw my husband’s eyes close. He was quiet. Then, eyes open, he said the word that I didn’t want repeated. “Amputate?” Ed said.
Ed leaned forward as if to hear the doctor better. “Yes,” Wolff said. “I believe that’s the only way to treat the recurrence. Ewing’s, as you know, has a poor survival rate—about ten percent. If we catch it in the beginning, then we have a pretty good chance of beating it.” Wolff then read aloud from different parts of the reports making sure we were clear about the results.
“I’ll call with the final details. Go home, wait for my phone call, talk it over and then you’ll tell me your decision.” Wolff offered no more information and we could think of nothing more to say.
Shortly afterwards, with Val asleep in the back of the car, Ed and I settled into the drive home. “I know what I heard,” I muttered, clearly not sure at all about what I had heard. I turned to check on Valerie, her body slumped against the arm of her car seat.
“Well, you heard wrong.” Ed’s voice was low and belligerent, his eyes locked on the road ahead.
“My hearing is fine,” I said. “Wolff said to go home and discuss it. So maybe, just maybe, there are other possibilities.”
“There aren’t. He said the leg has to be amputated.”
“She’s only six,” I said. “There must be another way.”
“There isn’t. We have no choice.”
“I can’t believe this is happening. Eddie. What are we going to tell her?” Ed didn’t respond. Okay, Eddie. We won’t talk about it. We’ll continue to hide.
Although Ed rarely spoke about the emotional issues surrounding Val’s cancer, he was vocal about the facts surrounding her oncology visits. These ranged from disjointed to nasty. We seldom agreed about what Dr. Wolff said or didn’t say.
One memorable exchange a while back revolved around Colace. “Wolff said that Val should take Colace,” informed Ed, as if it were a brand-new idea.” I told him, “Valerie had diarrhea after each chemo, not constipation. The Colace was a waste of time. And I don’t think she needs any more meds in her little body.”
“Are you a doctor?” Ed said, raising his voice. “Do you know what’s best for her?”
“I’m her mother,” I shouted. “Who knows her best? Not you. You’re downstairs in your office all the time.” Ignoring my comment, he said, “What are you talking about? If Wolff said give it to her, you give it to her!” I walked away, affronted that he would question me.
But I believed that we each blamed the other as proxy for the tumor that threatened our daughter. Beyond reason, Ed and I would take turns trading edgy retorts, circling wildly, going nowhere. After a while, I’d stop responding.
Sometimes, though, we had a comforting check-up with no nervous or disagreeable aftermath. Val was doing well and both Dr. Wolff, Ed and I were in agreement. The medical tests were all negative and on those days, the doctor seemed less dour than usual. Pleased with the visit, I chattered all the way home.
I’d say, “Let’s have Chinese tonight. We’ll take the kids and go to the restaurant that’s upstairs over the cleaners. What’s the name again, honey? I don’t remember. But the kids love it.” And Ed would say, “Sure.” Although he never chattered, he did smile more.
Valerie was now a year past her six weeks of radiation and two years of chemotherapy. Free of all the side effects, she looked marvelously rosy-cheeked. She was back in school full-time with absences only for a few childhood problems: nothing uncommon, nothing scary.
Happy in first grade, Valerie had play dates with her friends from school and children in the neighborhood. Stacy had her family back, was pleased with her third-grade teacher and loved her swimming lessons and pottery classes. She too seemed happy. Ed and I moved back into our tennis games and twelve months breezed by like a puff of wind. Although shadowed by the ongoing fear of recurrence, life had returned to normal.
Until that day when we were brought face to face with the need to remove our younger daughter’s right leg.
But first, on the way back from New York, Ed and I had to get Stacy from Phyllis’s home. My guilt popped up as I thought about how often we left our older daughter with friends or family during those two long years of Val’s treatment. Yet it was all part of the cancer package we had to deal with.
And now, we were going to do that again, this time with an amputation added to the mix. All the time I spent away from Stacy when Val was being treated, and after each injection when she was so sick, did my older daughter feel abandoned? Will she feel that way again? Does she hate me? Stop it, said Suzann.
Back in New Jersey, Ed parked our car in front of Phyllis’s house. He turned and unstrapped Valerie from the car seat and we both sat back to watch her newest version of running.
Val’s radiated right leg, shorter than the left, forced an energetic but ungainly blending of limp and skip. Bouncing up the porch steps, she pressed her finger to the doorbell. They were waiting for us: Stacy, Phyllis, her husband Don and sons, Johnny and Alan.
The four children raced upstairs to play as the adults moved into the family room. I stared out the window while Ed, his voice steady, recounted, most likely, the next course of treatment. I can’t remember Phyllis or Don’s reaction. I know I didn’t, couldn’t, listen to the discussion. I walked over to their bookcase and counted all the books I had yet to read.
Soon after, we left with our two girls and headed home. On the way, Ed reached out to hold my hand, our rancor forgotten and, secure in his grip, I imagined that all four of us were space travelers rocketing away to a distant planet, never to return. For the moment, I felt free . . .
Back home, Ed called Isa. He told her what Wolff had said. They spoke for a while. Ed answered Isa’s questions—she was as shocked as Phyllis and Don had been. My husband was ready to hang up when she mentioned a doctor in Texas who had operated on a different type of cancer in the bone of another friend’s arm. The doctor was highly regarded. He was kind yet very efficient. His patient’s cancer was evidently gone.
“Call if you want, Sue. Here’s the phone number,” Ed said, after he hung up. He was very tired. Weary might be the better word. Words. One word can mean so many different things: Bored. Sleepy. Drained. That’s it . . . Poor Ed. He’s just drained. As well as weary.
I understood that Wolff would have talked to all the specialists; I knew he had poured over the tests again and again. But I had to hear someone else’s professional opinion. I wanted something miraculous, something totally different from what I had already heard. I wanted to hear “Mrs. Goldstein, Valerie doesn’t need her leg amputated. She simply needs lots of warm hugs and kisses and a bit of physical therapy.” Not impossible . . . ?
I had to dial the number several times. My finger didn’t seem to work well. I took a deep breath, slowed down and finally got it right. I spoke to Dr. Lightman’s receptionist in Houston, Texas. After I told her why I needed to talk to the doctor, she told me to hold on, that she’d get him. No time wasted, he picked up the phone. The speed with which Dr. Lightman did that was much appreciated. “Stay with Wolff,” he said. “I know his reputation. He’s a terrific doctor, the best around. Let him amputate, Mrs. Goldstein. And the sooner the better.” I told Ed. He nodded, rubbed his eyes and went downstairs to work.
That night, I thought about how sweet Valerie was, how impish she was, how she loved her older sister, how we loved her and, after next week, how she’d only have one leg.
In bed with the lights out, I tried to sleep. I couldn’t. I tried to cry. I couldn’t. The tears sat deep in my chest, unable to find their way up and out. Was that normal? I didn’t think so. My dad and my brother brought me up so I blamed it on them, and Ed, too, after that evening in the diner. Isn’t that what they say about men, that they don’t cry? I never saw my grandmother cry so I added her to the mix. What do they say about Eastern European women?
Just the same, if I cried and cried and cried, Ed would put his arms around me and say, “It’ll be all right, sweetheart. She’ll be fine. We’ll be fine.” Snap out of it, said Suzann.
What’s wrong with me? I was unable to cry and Ed was, I think, asleep or lying quietly turned away from me. I could scream though. I’d like to scream. In fact, I want to SCREAMMMM!
My family was sleeping . . . scream and wake everyone up? Of course not.
Editor: Edwin C. Goldstein