MY BEST WRITING

Posted By on December 1, 2016

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

FIGHTING BACK: One Mother’s Story-Chapter Twelve

Posted By on October 16, 2017

A pleasant calm prevailed after we moved into our new home. Valerie’s prosthesis became simply another fact of life and all but disappeared from our everyday vision and conversation. I took care of the house, cooked, did the bookkeeping. Ed sold kitchen cabinets and sundry items and the new office, recently located outside the house, was only eight minutes away. We both watched out for the girls; they went to school, fought a bit and complained about the inevitable doctors’ appointments. And we took our regular Sunday trips again. It felt normal.

Play Dates!

The choices were up to Stacy and Val: The Turtleback Zoo in New Jersey, The Museum of Natural History in New York, maybe an afternoon spent with friends who had children: I must admit that the latter, the play dates, usually won out. We did take, on occasion, long drives through the countryside, play “I spy” in the car and, at the end of the day, search for child-friendly restaurants. Or we’d simply stay home and play games.

For example, we played front-yard softball with the four of us divided into two teams. Stacy and Mommy were the ‘Sam I Ams’ versus Valerie and Daddy’s the ‘Cats in the Hats.’ One Sunday, first inning: Valerie was at bat, Daddy was on deck, Stacy was in the outfield and Mommy was the pitcher. “OK, batter,” I said to Val. “Time to strike you out! Here it comes.” I wound up for my slow pitch blooper, threw and hit Val’s flesh and blood thigh. OhmyGod! Batter Val cried hysterically. Pitcher Mom dissolved. Game called because of injury. Both teams were dropped from the league. End of front-yard softball for the Goldsteins.

We moved on to our driveway’s asphalt basketball court. The girls were excited. It was the first time for both. “Throw the basketball to me, Mommy,” hollered Stacy. I did. She dropped it. Ed now had the ball and bounced it to Val. She laughed like a loon, caught it, dropped it, then caught it again and held on, running around wildly with the ball in her hands. But Val didn’t look where she was going. She fell on the asphalt, the ball bounced away, her good knee started bleeding and stormy tears, again, fell. “Yuch,” said her sister.

Obviously, driveway basketball didn’t work for the kids any better than front-yard softball; from then on both games were limited to adults only. Ed and I were resigned; it was back to the card and board games at our kitchen table.

Meanwhile, Valerie, our darling little girl, was doing wonderfully. And all was well. Almost.

One day after school, the bus deposited the children a few houses down the street as usual. Standing at the kitchen window, I saw Valerie talking to our next-door neighbor, Norma. Good. Val’s home. Stacy was running up our driveway. Okay, Great. She’s home, too. They were both where I could see them, unscathed from a day in academia. Or so I thought.

Stacy burst into the house, her face flushed and contorted with tears. “Mommy, the kids at school are calling Valerie Pinocchio! They are so mean!” I hugged Stacy tight and, before long, the tears abated.

After my big girl quieted down, we talked about bird-brained children and empty-headed adults. “It’s hard to ignore certain comments, Stacy, but I think that, most of the time, it’s the best way.” And so I told her about a stranger at the supermarket who once asked loudly, “What happened to that poor little girl’s leg?” pointing in our direction to Valerie who, at the time, was still on crutches.

“I thought it was stupid of that woman to ask about Val’s leg in that way and in such ear-splitting fashion, but it was done. She said it and couldn’t take it back even if she wanted to. So I turned Val away from the woman and we moved on. I don’t want you to fight with anyone, Stacy. But if it’s unavoidable, just say what you think is best.” She looked skeptical but seemed relieved.

Later, my angry hindsight suggested I should have left out the ‘don’t fight’ part. Let her fight; she might have felt better. But my ultra-sensitive eight-year-old had turned the problem over to a higher authority and feeling more comfortable grabbed a cookie and went into the den. The no-eating-outside-the-kitchen rule was dispensed with for the afternoon.

I should have expected the name-calling. While in the hospital Val came up against ill children and their parents, staring first at her ‘little leg’ when she was on her crutches and then at her prosthesis. And I remembered that, shortly after Val’s prosthesis was fitted, she and I took a walk up our street. Across the way was a young boy, a neighbor’s son. He spotted us and with a big grin on his face, shouted out, “Hi, old wooden leg.” I shouted right back, “Stop it, Jimmy. That’s not nice. You should know better.” Bending toward Val, I said, “Just ignore him, honey.” Should have kept your mouth shut, Sue, or just told Valerie what a jerk that kid was!

And now, Pinocchio.

The contradiction between my behavior and my advice hovered in the air. Valerie, walking close by my side held tight to my hand; she was quiet. I began speed-talking about a movie we could go to over the weekend. It was her choice, I told her.

Nasty Kids!

Val never said a word to me about that incident. Maybe she forgot about it, too young to retain those kinds of hurts. Or, more likely, she held them all inside. I’m sure there were more such episodes but I didn’t hear about them.

But what to say to her about today, this Pinocchio hurt? I waited for Valerie to come into the house, willing my mind to come up with something that would lighten her burden.

Although Val usually ran right in to give me a hug, gab about school and ask for something to drink or eat, that afternoon she dawdled outside. After a while, when she did come in, I caught hold of her, sat down and pulled her onto my lap. “Valerie,” I said, “kids sometimes are not nice, just like adults. You know how I get annoyed with Aunt Phyliss or Aunt Isa and some of my other friends? Kids are like that, too. They say things that they may not really mean but they hurt anyway.” And I talked about kids calling other kids names, the typical stuff that parents lecture their children about: kids don’t realize that they may be hurting someone; kids think name-calling is clever; their parents hadn’t taught them properly; blah, blah, blah.

Val didn’t say anything. She leaned back against my chest looking down at her hands while I talked. When done, I rested my chin on her head, held her close for a while longer and then let go. I sat quietly, not moving, as Valerie slid from my lap and walked away, leaving behind another view of what sadness looked like in a child.

Still sitting on the kitchen chair, I squeezed my eyes shut, thought about Pinocchio and the good times that were often dominated by the bad, shook my head hard and then imagined our upcoming vacation.

“Stacy, Val, listen up you guys,” I called out. “Don’t forget. In two weeks, we’ll be going to Puerto Rico. We’ll have such a good time! Anybody want some more cookies?” Maybe I’ll have a cookie, too.

Puerto Rico!

Thinking about the buoyant waters of the Caribbean and the bright warmth of the sun pacified me somewhat. We four would have fun and we’d forget little kids saying nasty things.

The shadow dogging our footsteps was, for the moment, brushed aside.

###


Editor: Edwin C. Goldstein

FIGHTING BACK: One Mother’s Story–Chapter Eleven

Posted By on October 6, 2017

Related image

 Sell or Continue Building?

The big question for me? Should we continue building in Warren after Valerie’s amputation or should we sell the half-finished house and remain in North Plainfield? The stressors kept building. We did have the option of selling. One couple drove by the Warren site in a fancy car and offered us a great price.

“Let’s sell,” I said. “No,” said Ed. “The ranch house will be a new start for us. It’ll be better for Val—a shallower, carpeted staircase for going downstairs to the rec room; that’ll be so much easier for her to maneuver—she’ll love it. And Stacy will love it, too.”

“Fine,” said I, too tired to argue.

I began to pick out antique white bricks for the front porch, old red bricks for the den fireplace wall, some dark color for the roofing shingles—didn’t care about them—and gray siding. The list went on. Ed brought home the samples at night after his workday was over—two or three each at the most—and I chose the ones I wanted. It turned out to be the easiest way to build. No waffling. Just quick decisions after the two children were in bed.

Ed had the harder part. He drove to Warren every day at six a.m. since he was the general contractor for the job. His extensive experience at E & S Sales came in handy and saved us lots of money! Ed checked the work that had been finished the day before, swept up ahead of the crew arriving in the morning—the first and last time I noticed him fussy about neatness—went off to work at E & S, and at the end of the day would go back to check on what had been done. Would he sweep up before going home at night too? Maybe. He loved that construction site!

When I had time, I’d go with Val to the new house to see what was happening. She wasn’t back at school yet because the prosthesis hadn’t been finished. We’d walk carefully around the new house and I would show Val, on her crutches, what had been done that day.

“Look, Val, the windows are in. Aren’t they great?” Or,

“Val, this is your bedroom and that one next to it is Stacy’s. What do you think?”

“I love my room, Mommy. Can I have a desk?”

“Of course you can, sweetie. You’ll both have one.”

The Mason

One day, we walked into the den to look at the brick wall with its beautiful fireplace and saw the mason. He was working behind the wall, the part between the red bricks and the garage, and was half done. What an odd sight watching him work behind that half-finished wall!

The next time we went to the house, the den’s brick wall was finished and looked lovely. But where was the mason? Still behind the wall? Enclosed forever behind that wall? Hmmm.

Moving day came one early morning in August 1973. Val had her prosthesis at that point and I had signed them up for the July and August season at Hi Hills Day Camp in Warren. I thought it would be easier to get everything out of the bi-level and into our new home with both of them out of the way.

I woke Val first. It took her longer to get dressed because of the artificial limb, and then went in to wake Stacy.

“Mommy, my throat hurts,” she said. Oy vay. I took her temperature; it was 102°. I panicked and hustled my daughter over to the pediatrician. “Sue,” he said, “she can’t go to camp today. It doesn’t look like strep but it’s bad. Put her on this antibiotic and keep her at home.” Oh, no!     

I called Isa. She was one of my best friends and lived nearby. I loved her. I said, “Take Stacy for the day. Put her to bed. Just until we get into the new house. Pleeeeease, Isa!” Isa did.

Valerie went off to camp as planned with a warning not to kick anyone. Did she? Perhaps. She got away with murder at camp. At the end of the day the bus would drop her off at our new home in Warren.

Meanwhile, the truckers had loaded almost everything onto their truck. The North Plainfield house was empty except for Stacy’s bed: Stacy was still in it, poor thing. When the truckers were ready, I bundled my sick girl up and took her over to Isa’s. And Ed and I were off to Warren and our new home!

home,house,building,homepage

OUR NEW HOME!

We worked hard at the house—Ed’s many time-outs for business calls that day didn’t count. We put everything away, and made the children’s rooms as perfect as possible. Eventually, my husband drove over to Isa’s, thanked her gratefully and brought Stacy to our new home. The medicine had begun to work and she felt better. After camp, Valerie was dropped off  in Warren. Her excitement knew no bounds. Stacy was a bit calmer, still not feeling fine, but excited nonetheless.

Before I could think about dinner, however, the Warren house inspector arrived. He told us we couldn’t stay in the house since we didn’t have a Certificate of Occupancy. Ohmygod. Can’t stay in North Plainfield and not allowed  to stay in Warren? Ed began to make calls; he needed to get a Certificate of Occupancy by the following morning.

We spent that night at Motel 22, a few miles from our new house. It was a passable room with two double beds. The girls wanted to sleep together and I said okay but, “Behave!” They promised they would. Soon Stacy started tickling Val, Val started giggling and without another word we separated them. I slept with Stacy and Ed slept with Val. It was a moving experience.

Morning came and we rushed to get back to our new home with its official Certificate of Occupancy. The house was beautiful but all the landscaping was mud. I kept a close eye on Val, afraid she might fall. She didn’t. She had acclimated well to the prosthesis. Mommy hadn’t. Not then anyway.

Once in the house, Valerie turned to me, “Mommy, where are my crutches?” Oh, boy. Her crutches. Where were they? I looked around and finally said, “Val, I think we left them at the motel.” My tough little kid immediately started crying as if her heart would break. Her reaction startled me. It was not like her but Ed drove right back to the motel. “Hurry up,” I said. “Val needs her crutches. Right now!” Valerie looked sad until the crutches were returned to her.

And that morning, I learned something else about my littlest child. There were items she counted on in a desperate sort of way and crutches was one of them. I’ll find out about the others in time. I know that. But right now, she had her crutches, was wearing her prosthesis and all was well.

We adored our new home. The girls would be fine, and Ed and I would calm down. So I hoped.

###

FIGHTING BACK: One Mother’s Story–Chapter Ten

Posted By on September 19, 2017

Two days after the surgery that removed her right leg above the knee a physical therapist came into the hospital room to show Val how to use crutches. She could have saved the trip. Squirming around a bit, my six-year-old waited for her to finish, then put the crutches under her arms and took off out of the room without a backward glance. Both therapist and Mommy started hollering. “Val, come back, slow down, you’ll fall.” My heart was in my mouth. NO, my heart had stopped all together.

The Whiz Kid!

Obviously, the lessons were not needed. She was terrific, my little girl.

A week after the surgery, though—to be exact, the morning of her discharge—my upbeat little girl moped around the hospital room. I was packing up her few clothes and many toys when Valerie climbed onto the bed, her face in a pout that was an instant short of tears.

“Can’t we stay here longer, Mommy, just a little longer? I don’t want to go home.” I wasn’t surprised at her reaction. I didn’t want to leave either and had agonized, silently, about how to clean the many stitches, how to apply the medicated salve, how to re-bandage the wound and how to ensure the healing. Her little leg—called a stump or residual leg by the professionals—required tender and expert care. The nurse showed me how but, for me, it was unnerving.

Babies Hospital had become a safe haven for both of us. I was the adult and couldn’t voice my fears. But Valerie did. She was afraid to leave what had become for both of us our refuge from the outside world. But why was Val frightened? Doctors and therapists had explained the prosthetic leg to her. I thought they did a good job.

I had said to her,“Oh, Valerie, sweetheart. It’ll be easier than the crutches the physical therapy lady taught you to use and that was very easy, wasn’t it? Just you wait. Once you get your new leg, you’ll be running as fast as the other kids.” We all talked that way. Did we overdue it about a new leg?

What did Val believe? That it would look like a real leg? Feel and act like a real leg? I remember only that I struggled over the week to understand what she was thinking, especially about issues as complex as amputations and prosthetics. I never gave a thought to the language, the words, we actually used.

In the end, though, I believed that something happened in the hospital playroom. She liked going by herself and one of the nurses from our floor would drop her off. At those times, I stayed behind in the room and waited for her return. Had someone in the playroom been hurtful? Was that what worried her? Other children’s reactions to her amputated leg?

I started watching facial expressions. Walking the eleventh floor of Babies with Val beside me on her crutches, I began to see the reaction on the faces of the other small patients. They stared. Their parents stared, too. What about the children and the adults in the outside world? Would they stare as well? Did Val believe they would?

I sat next to her on the bed, put my arm around her and said, “After the stitches heal, hon, you’ll get your new leg.” There I go again. Next time, I’ll say prosthetic or artificial leg. Will she understand that better? I went on, “You’ll play as much as you like. Your own comfy room, your toys, and especially Stacy, are all waiting for you at home. Your friends are there, too, but I know, you’d rather go back to school and work hard. There won’t be any time for TV. You’ll just do HomeworkHomeworkHomework, eat fish and veggies and then you”ll go right to bed.” My delicious little girl giggled.

“Ohhhhhh, Mommy!”

“Ohhhhhh, Valerie!”

And whatever it was disappeared from sight.

Stacy and I talked again after that awful night after Val’s surgery when she alternately cried and screamed at me. “Stacy, I love you, and I understood that Val’s amputation has been a shock to you. That was our fault; we should have told you before. I’m so sorry, sweetheart. Please forgive us.” She accepted that Ed and I never mentioned cancer. We simply talked about bad cells. And Stacy understood, I thought, that amputation was the only way to get rid of them.

I spoke to my older daughter at least twice a day while Val and I were in the hospital. Val, too, spoke to her but Stacy didn’t visit. She didn’t want to and we didn’t force her.

When the three of us were finally ready to leave the hospital and drive back to New Jersey our daughter charged ahead on her crutches, recklessly swinging her little body through the stuffy institutional air. Hand in hand, Ed and I hurried behind her as she raced toward the elevators and the rest of her life.

Once we pulled the car into our garage in North Plainfield, Val grabbed her crutches and awkwardly rushed out. Stacy was there waiting for her little sister. In her hands was a new toy, a mechanical pen and pencil set, which she held out to Val. Then Stacy walked her sister slowly—more slowly than warranted, I admit—into the house. Valerie was thrilled to have Stacy’s undivided attention.

Ed and I were over another hurdle.

My attempt at doctoring was successful, the surgical wound was healed and, shortly afterwards, Valerie was introduced to the prosthetist in East Orange. She seemed calm about the process, no overt behavior on her part one way or the other. She wasn’t excited; she wasn’t depressed; she was matter-of-fact. Both girls were. Suzann says we’re resilient. But I knew that!

Over a series of visits, Val was fitted with her first artificial leg, a flesh-colored prosthesis. The devise was in two pieces and shaped like a leg except for the foot; although formed like a foot the toes, only, were suggested by thinly etched lines.

Val’s Little Leg

The two pieces were connected by a leather hinge that substituted for the knee joint. The top section of the prosthesis was cone-shaped and hollowed out to fit over what remained of Val’s thigh–her little leg. A wide leather belt wrapped around her waist and kept the whole contraption secure. It looked uncomfortable but Valerie didn’t complain and showed no hesitation in using it.

Stacy examined the prosthesis thoroughly and pronounced it fit for her little sister to use.

We all catered to her. Stacy, usually possessive of her belongings, generously handed over some of her most cherished toys. “Here Val, play with this. No, no. You can have it.” Valerie graciously accepted.

Ed and I followed Val around, waiting to catch her in case she slipped and fell. That didn’t happen. She was as steady on the prosthesis as if it were her own flesh and blood.

But something had happened; Valerie had been transformed into royalty. “Mommy, turn the channel, please.” She was perfectly capable of getting up and walking or hopping three feet to the TV yet I ran to turn the channel. Or “Mommy, I can’t make my bed. I’m too tired.” Mommy said, “That’s okay, honey. I’ll make it.”

Valerie didn’t object to this above-standard behavior but soon Stacy did. “Ma! Let Val do it,” eventually brought forth a hissing sound from my throat. But, of course, Stacy was right. She would shake her head in disgust at her sister’s opportunistic nature and her parent’s fawning.

Val’s ability to move around with ease increased exponentially. For instance, early in rehab, when asked by a doctor to walk slowly down a hallway at Kessler Institute, the rehab facility in West Orange, my lively daughter ran but now in a new way that followed her for the remainder of her life.

The prosthesis, fitting snugly over Valerie’s little leg, was propelled by her thigh in a thrusting motion. With a kick, Val drove the prosthesis forward, hit the ground with it, and then, with a roll to the left, pushed off on her good leg. It got her where she wanted to go and it got her there fast. That new leg turned Valerie into a meteoric marvel.

The rehab sessions were brief but she was bored anyway. Newly skilled in manipulating both the crutches and the prosthesis, Val’s world-weary attitude ended with the promise of lunch at McDonald’s.

Our learning curve was slower than Val’s but we did learn. Val was our patient coach and taught us, among other things, that being brave and having fun were not mutually exclusive. Apparently, the worries that surfaced at Babies had disappeared or gone into hiding.

Over time, we breathed easier as Val swung on her crutches like a pint-sized gymnast: we smiled at the clumping sound it made when she ran; we shrugged at her methods to negotiate the stairs, either a rear-end slide-bump process or a precarious hop up or down. This last was hair-raising. She never looked where she was going.

It was all a challenge to the hidden barriers facing an amputee. It was also because her name was Valerie.

###

 

FIGHTING BACK: One Mother’s Story–Chapter Nine

Posted By on August 21, 2017

One week after our talk with Dr. Wolff about Val’s amputation, we were back in the hospital. Surgery was scheduled for the next morning.

The children had been told only that Valerie had to stay at Babies for a few days. Ed said, “The bad cells in your leg aren’t completely gone, sweetheart. You need more treatment.” Val’s tears came immediately. Stacy turned to me and patting her little sister’s back asked that perennial question, “Why, Mommy?”

“She’ll be fine, Stacy,” I said, “Her leg just needs more treatment.” She was puzzled, and worse, disheartened as her world turned upside down once more.

The Cancer’s Back

At the hospital the night before Val’s operation, Dr. Dorn, the orthopedic surgeon who would do the amputation, told me he’d like to talk to his patient without me in the room. “It would be better,” the doctor counseled, if he spoke to her about the surgery. “Just the two of us,” he said. “She’ll be angry with me, Mrs. Goldstein, not you.” I listened to him. He was the expert.

I slipped out of the room but lingered close to the open doorway. Ed was down the hall at the nurses’ station.

I knew Val wouldn’t be angry with me, wouldn’t blame me for the amputation. I didn’t worry about that. I worried, instead, about me. How would I handle it? I’ve never been up close to an amputated leg before, never knew anything about it. Ohgod. What would I do? No one had told us what to do . . . we weren’t told anything! I was afloat, cast away from all that I understood, all that I knew about motherhood.

What do I really know about it? About my mother? I wanted her, to talk to her, to ask her what to do, how to handle this. How could I have ever forgotten what she was like, what she had said to me, what she meant to me?

I felt as if I were coming apart, surrounded by darkness, danger, impermanence. Oh, stop being so histrionic, Sue, said Suzann. It’s not you that it’s happening to, it’s Valerie. You need to help her, take care of her. And you will.

My poor baby. Would she wonder why I left her hospital room? And why had I? I simply obeyed the doctor. I should have held her close while Dr. Dorn explained the surgery. Would Val understand what he said without me beside her? Exactly how was a little kid supposed to comprehend what was so incomprehensible to an adult?

I worried, then, about Ed. Since I’d be at the hospital with Val, he would be the one to explain the surgery to Stacy. She was a bright youngster yet . . . What would he tell her? What would she think?

Poor Ed. Not only would he talk to Stacy about the amputation, he’d have to phone my dad, his siblings, his mom. Ed would do that by himself, making all the calls, contending with the distress of others as well as his own. At least I’d be with Val, holding on to her, comforting her, helping her cope with the pain and the shock. I looked down at my two good legs. Godallmighty. Interrupting my thoughts, Dr. Dorn appeared at my side saying, “See you tomorrow.” He didn’t say a word about his discussion with Valerie. And I didn’t ask. What’s wrong with me?

In a hurry, the good doctor rushed away but not before Ed, moving toward me, called out, “Get a good night’s sleep, doctor.” There was no humor in my husband’s voice. The doctor, head down, continued walking but said loud enough for us to hear, “I will.”

I wondered, on a different note, did Ed worry about what he’d say to Stacy? Probably, but we didn’t discuss it. So many things not to discuss! And I knew that it wasn’t right, but what to do? It wasn’t that we didn’t love each other. We did. It was more simply . . . avoidance. He avoided and I followed suit.

Back in Valerie’s room Ed and I sat down, one parent on either side of her bed. I laid my hand against my daughter’s cheek and asked, “How was your talk with the doctor, pussy cat?”

“Okay,” she said. “Mommy, will you change the channel?” I reached over her bed to grab the remote, glancing sideways at Ed at the same time. He was just as stymied by Val’s response as I was. Did she know what was to come? My husband made no comment and I didn’t push for more conversation. Maybe Val would say something about the surgery after she had absorbed the doctor’s words.

The loudspeaker announced that visiting hours were over but Ed and I stayed much longer. Everything was in place for Valerie. The TV was on, Snoopy was in bed beside her and the nurses promised to look in on her frequently. They assured me they would do that each of the many times I asked. At last, after countless irate looks from the floor staff, we kissed and hugged Val goodnight and told her we’d be back early the next morning.

Ed and I threw more kisses to her on our way out of the room, competing to see whose flying smooches would be the loudest. Valerie managed a lopsided smile and a small wave.

We couldn’t look at each other, but we held hands walking toward the elevator. It was our way. Holding hands. Holding tight. Keeping close despite the emotional upheavals, reminding us that we were not as isolated as we felt. We had each other.

I didn’t cry. I didn’t sleep either. As I often did, I lay in bed wondering where we were headed. Now, the same questions kept coming back: what would happen to my wonderful children, to my husband, to me? All the questions that didn’t have answers.

The next morning, Ed and I were back at Babies. Valerie was groggy from the pre-surgical meds, and when an attendant pulled her bed from the hospital room she barely noticed. The IV pole and a surgical nurse took up one side of the bed. On the opposite side Ed gripped Val’s ankle while I held her hand. Neither one of us could let go. “Mrs. Goldstein, we have to take her in now. Please, say goodbye to her. Mr. Goldstein? You’ll be told when she’s back in her room. She’ll be okay. She’s a trouper.”

Great. She’s a trouper. So what? Will that protect her? Keep her safe during the operation and afterwards? Guess what, Dr. Dorn, I’m the angry one here.

We headed down to the main waiting room at the end of the hospital’s large lobby. I had hated it since our first visit there three years earlier. Hate. What an awful word. I use it too much.

Long and narrow, the waiting room was shabbier than ever and the lamplight appeared gloomier. While eyes turned away easily in the waiting room, the sounds were heard clearly: someone crying in the back of the room; a voice whispering indistinctly near the doorway, the panic pronounced; or the discord of a lightning-like discussion in an unfamiliar language. Of course, we also heard the silence, a foreboding silence.

Conversation eventually developed. A nod of the head, a grimace, a tentative smile broke the ice. Simple questions and more complex answers sometimes followed. A young mother began, “How old is your child? Is it a girl or a boy?” A father responded, “My son is ten. He has a hole in his heart. He can’t play ball like the other kids. The doctors are operating to try to close it.”

A shy, older woman, after a long pause said, “My daughter’s leg has to be fixed. She broke it when she fell off a horse. I told my husband I didn’t want her to ride but he wouldn’t listen to me. Anyway, it healed wrong and now the surgeons are trying to correct it. I’m not certain how. I don’t understand what they’re doing. They talk too fast.”

Neither Ed nor I chimed in. But we listened, paid attention to the pitch, accent and agitation of the families and shared in their pain.

Intermittently, a doctor would appear and interrupt the murmur of conversation, or the silence, and beckon to one or two parents, a sister or a grandmother who would then leave the room hastily to be seen no more. It was no surprise: hospital waiting rooms witnessed the briefest of relationships.

Ed and I sat, our eyes fixed on the doorway, impatient for Dr. Dorn to materialize. Two and one-half hours later, when he did, we searched his face for signs that all was well with Valerie. Greeting us with a raised hand, the doctor said that the surgery was over and she was fine. Valerie would be upstairs in her room in about two hours. He’d look in on her in the afternoon.

Grateful that she was okay after the operation, I leaned back against the sofa, relieved but then wondered what the next few days, or months, would bring. Is the cancer gone now that her leg is? Will she be able to handle the crutches, the prosthesis? She was so little. I wondered, mutely to Suzann, Did we do the right thing?

True to the doctor’s word, Val was back on the eleventh floor by ten a.m. Ed and I were exhausted. Not Valerie. She was wide awake, in pain and waiting impatiently for us. Her thigh was heavily bandaged, raised atop several large pillows and covered by a sheet pulled up to her chest. The sheet prevented us from looking at what was no longer there.

Ed and I never talked about how we’d feel at the first glimpse of Valerie’s truncated limb. But then, we rarely discussed anything about feelings. Furthermore, we hadn’t discussed what we’d say to her or what she might say to us, but we’d soon find out. That’s how we did things. Not good, I thought. And I’d get so mad at Ed, at me—at the world! But before I got too carried away with my angst Val’s pain had to be controlled.

I pushed the call button, and before Val could fret again a nurse walked into the room with a hypodermic needle, administered a pain killer through the IV in her arm and walked out. Valerie whimpered half-heartedly but fell asleep within minutes. The rest of the day dragged by in similar fashion. She’d wake up, want something to drink, I’d give her a little ice, caress her arm, she’d fuss a little and fall back to sleep. I’d get up from time to time and nervously walk around the room. Pace, more like it.

Ed and I also took turns slouching against a nearby wall or sitting in an armless vinyl chair squeezed in between Val’s bed and a large dingy window. For dinner, while Val slept, we ate, or rather picked at, sandwiches from the cafeteria. Our makeshift table was the window’s twelve-inch marble sill. That sill, when it wasn’t a dining table held books, a few games, iced tea and Mallomars. The Goldsteins had moved back in.

Ed, his face drawn, left shortly after eating. At home, he would tell Stacy of the operation her sister had endured that morning. I had no idea how he would approach that or how she would respond. But he and I were partners who split a lot of the family and business chores, whatever they were—whether we talked about them or not.

Oh, My Poor Stacy

A few hours after Ed left, a nurse poked her head into the room. “Mrs. Goldstein, you have a phone call. I think it’s your husband.” I glanced at Val, fast asleep from the pain killers and tiptoed out to the hall.

The one public telephone across from the elevators was on a narrow wall connecting an office and the parents’ waiting room. Not a good place for lengthy or private conversations. The black receiver was dangling on its cord. I reached down and picked it up. It was Ed; he sounded rattled, on edge. “How’s Val? Has she awakened yet? Has she talked at all?” Then he said, “Oh, Sue, Stacy’s pretty upset. I told her about the amputation, said Val had to have her leg removed because of the bad cells. But she wants to speak to you. I don’t know how to calm her.” Before I could answer, I heard him say, “Here’s Mommy, hon.”

All at once, Stacy was on the phone shouting, “Mommy, how could you let them do that to Valerie? Why? She has only one leg now. How will she run or play?” I took a deep breath, trying to prepare for a calm, thoughtful response, but Stacy wasn’t finished. “What does it look like, Mommy? How can I look at it? Does it hurt her? Mommy, why?” Out of questions, Stacy suddenly stopped. She could no longer vent her alarm and cry at the same time.

I was stunned by the onslaught. I had assumed there might be confusion or an inability to understand all the issues. But my children had proven me wrong in the past. This was another of those times. Stacy had grasped what Ed had told her and instantly pictured the plight our family faced. Her young voice articulated the questions her tongue-tied parents had resisted.

I stammered a reply. “Stacy, sweetheart. We had no choice. The doctors told us that we had to amputate. We should have told you before . . . let you get accustomed to the idea, be there with you.” And how does she get accustomed to that, Sue, said Suzann? “I know that now. I’m so sorry.” I talked to her for a while but did no better than her father. I needed to end the call and get back to Valerie. “I love you, honey bun. I love you so much. I’ll speak to you tomorrow. Put Daddy back on the phone. I love you.” Over and over, I told her I loved her. Ed came back on the line. “I’m so sorry, Sue. I didn’t think she’d scream like that. She’s so upset.” “It’s okay, Eddie,” I said. “It’s okay. We’ll both take care of her. Tomorrow. You take care of her tonight.”

Did I soothe Stacy? What could I, should I, have said to her? What would my mother have said? I had no idea. I only knew that Stacy, as well as the rest of us, would be feeling the repercussions of Val’s illness forever.

And I thought to myself, could I comfort my loved ones, could I encourage them to walk along new paths, paths strewn with good things to come? There would be bumps, naturally, but wasn’t that my job, to smooth the way? Of course it’s my job but—can I do it?

I hung up the phone and ran back to Val’s room, unable to do much besides stare at her and then look out the darkened window. I spent the night on high alert, sitting in the vinyl chair close to the bed, a pillow behind my back, a blue hospital blanket over my legs.

I awakened in the morning, when first light broke through the window, stood up, stretched and sat back down to continue watching over my daughter. I worried about her pain though I was confident the nurses would take care of that. More worrisome to me was her reaction to the surgery. I would be the one to respond to that: to her questions, her bewilderment, her fright. My mind was in a muddle trying to concoct various scenarios, to work through them and to come up with just the right way to explain to my little girl what had happened to her.

Valerie woke a short while later as a nurse was adjusting her IV. Animated and seemingly without pain, my daughter threw me a beam of her personal sunshine. Smiling, she said, “Hi, Mommy.” “Hi, my little pussy cat,” I smiled in return. “Know what, Mommy? The doctor told me he was going to operate and take away my whole leg. But he didn’t. He left me a little leg!”

What? A little leg? What is she talking about? Ohmygod. Her thigh. Did she awaken in the middle of the night and look? How?

But it didn’t matter. Only that I was proven wrong once again. I grinned, my eyes burnt with unspent tears. With Val’s hand on my arm, she raised her right thigh—her little leg!—and introduced me, once more, to her own resilient, very magical, slant on life.

###

FIGHTING BACK: One Mother’s Story–Chapter Eight

Posted By on August 7, 2017

Our New Home!

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.

Test Tubes With Drawn Blood

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.

Playing-Dancing-Laughing!

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.

###

 

 

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.

###

 

 

FIGHTING BACK: One Mother’s Story–Chapter Six

Posted By on June 19, 2017

Traffic into New York City had been bumper to bumper. I was late. Valerie, my five-year-old, was in Babies Hospital one month after her last chemo. It was January 12, 1972, the date marking the end of two long, difficult years of shock and turmoil for my small family. This time, her checkup was for a three-day stay in the hospital; the doctors wanted to make sure that no residual cancer was found in her small body.

I rushed through the hospital’s lobby, ran to the elevator and pushed the button for eleven. It was slow coming down to the lobby: then again it was always slow for me.

Finally, that snail-like elevator reached the eleventh floor and I rushed out. When Valerie caught sight of me, she pointed to the round black and white clock high up on eleven’s wall, a comic frown transforming her impish face. That clock measured time exactly the way I measured flour for baking. No mistakes allowed.

That Awful Hall Clock

The rebuke dragged on as Valerie’s foot, tapping dramatically on the drab floor, punctuated her shout. “You’re late, Mommy. Where were you? I’ve been waiting!” It was a few minutes after ten—any minute after ten, according to Valerie, meant that I was late.  Why did I ever teach her to tell time?

On that Wednesday morning Val lingered in a pink nightie with an outlandish picture of Donald Duck on the front. Faded and permanently stained with finger-paint from the hospital playroom, it was much too big for her but the down-to-the-floor nightgown was loved beyond reason. I dared not throw it away.

Her pout quickened to a giggle and bursting with nervous laughter, she ran to me. I caught her in my arms and held on tight, repeating over and over, “I’m sorrysorrysorry.”

Valerie didn’t complain about the three-day hospital stay once she was there—she was a pro at this point—but, still, misery shone from her eyes. They followed me everywhere that first night as I unpacked her favorite blanket and pillow.

Valerie’s stuffed lion had leaned cockeyed against the metal bed rail and made her hospital room seem more like home, but my little girl didn’t smile. O God. What will they find this time? Nothing! The doctors will say she’s in remission. But I believe she’s free of the Ewing’s sarcoma. Free!

Since hospital rules prevented parents from sleeping over, the night staff assumed a surrogate’s role. Some handled it better than others. A widespread belief existed though, and I for one was a believer, that the nurse in charge of your child was special, that she was a loving stand-in for the parent.

Right from the beginning of the overnight stays, when Val first got sick, friends would drive me to the hospital each morning so that Ed and I could drive home together at night. I would arrive a bit before ten o’clock and Valerie and I would then face, together, the medical staff and their varying procedures.

We spent the in-between time in Val’s room; I read to her, she watched TV and when tired of that, we played card games. In between, I followed her orders.

“Mommy, I want grape juice.”
“I want an Oreo, Mommy.
“I want Captain Crunch without milk. No milk, Mommy!”
“I want won-ton soup, Mommy, with only one won-ton.”

The soup was special, not hospital-based or homemade, and required a trip outside the hospital to a nearby Chinese restaurant. The rest of my time was spent running marathons up and down the eleventh floor collecting whatever my daughter wanted. I was not alone. The other mothers ran beside me.

Ed joined us at the end of his workday and was welcomed as member number two of Val’s private labor force. At that point, he and I took turns following Valerie’s commands. Every so often, though, when Val gave me permission, and after adding ice from the eleventh floor’s fridge to my personally-brewed iced tea, I would sit in the parents’ lounge and sigh in relative comfort. Stored in a large glass jar from home, the tea’s pale color was occasionally mistaken for a urine sample.

All too soon, though, we’d be forced to give Valerie a last hug and kiss goodnight, tuck her in and rush home to Stacy.

Leaving Val’s hospital room, Ed and I would race to our car for the hour and a half’s drive back to New Jersey. We needed to send Stacy’s various babysitters home and tuck our older daughter into bed. Listening to a brief summary of her day, I’d hug her quickly, smooth her hair, touch her cheek and try not to be too annoying. Ed gave her loud, mushy kisses and long hugs and, of course, was very annoying. We mostly made the Stacy-deadline but it was all in the timing.

Time. So precious . . . so scarce. Governed by that black and white hospital clock, it was my particular bully, confining me to boundaries shaped only by illness. Always in hurry-mode my day was a here-there affair, eternally rushing to get somewhere, anywhere, on time. I fought to beat the clock, to move faster, to advance ahead of speeding time, thinking I could somehow slow it down.

When Val was diagnosed with bone cancer, Stacy, our healthy child, was abruptly thrust into the background. It was not my intention nor my desire. I worried about Stacy when we were apart, hustled to get back to her as soon as possible and, yet, when with her, I wanted her sister.

In the wake of all that, I became marked by the belief that time, forever pictured in my mind as a round black and white clock, had to be accounted for every moment of every day.

And I wondered, will I ever be able to saunter through life again? Will I ever lose the worry that now stalks my every footstep? Will I ever find my way again?

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FIGHTING BACK: One Mother’s Story–Chapter Five

Posted By on June 5, 2017

Ed and I worked hard. We had no options. Our major medical had maxed out at $20,000—that was gone in an eye’s blink—and the slew of doctor and hospital bills on the corner of Ed’s desk showed no signs of diminishing. Besides that, there was the need to eat.

Our new company, E & S Sales, Inc., sold kitchen cabinets, bathroom vanities, builders’ hardware and anything else Ed could get his hands on. The company’s business began in our home and had one full-time employee. That was Ed: president, chief salesman and business mastermind. The vice-president and bookkeeper, secretary and daytime answering service was me. I was efficient, did what was expected and dealt with the books and secretarial chores after the kids were in bed.

My salary came in the form of praise for a job well done. When I brought up the issue of payment, my husband told me, “You’re paid but you just don’t pocket it in the conventional way. You get lots of love, a great home, and, most of the time, you can have whatever you need or want.” Sure, honey. Of course. But the truth is, I resent it. I want to be a full-time mother of healthy children. Instead, I’m a mother who has a sick child and another child who needs my attention and doesn’t get enough of it. So at least give me a little income of my own. Some money that’s all mine!

“Listen,” I said. “I have no idea what you pay yourself. You don’t tell me what you pocket. You keep secrets from me!” My face was hot, my anger now full-blown. “My friend Patti gets a salary from her husband. She works in his office and she gets paid. Why not me?”

Back and forth it went until Ed said, “You can have almost anything you want. Why do you need a weekly check from the business?” I threw up my hands and walked away.

In all honesty, I didn’t need or want anything except healthy children and a happy family. I also knew that we were struggling under the weight of all those medical bills but the martyr role seemed, at the moment, to suit me. I didn’t talk to him again for the rest of the night. Ed apologized before getting into bed and I accepted it but I never did get that weekly check.

Ed and the Competition

I thought about it only occasionally and then, I would erupt with anger, but we were both busy and salary issues generally left my mind. From early morning till nighttime, Ed immersed himself in the business selling his wares. It was a jungle out there, but swinging through the treetops each day meeting and cajoling the builders was exhilarating, if exhausting.

He came home at night worn out but then, so was I. During the day, Ed went to work and there were people he met who didn’t know what went on in our home. How lucky for him! At times, it seemed as if we were living in separate families. But I understood that working hard to build the company was his way to keep from thinking too much about cancer and Valerie. It was his way to cope.

My way was non-existent.

I was newly isolated from my usual routine. Child-related happenings like car pools and after-school interests continued when possible but adult social activities such as tennis games, long and gossipy conversations with friends and the occasional fun trips to New York were eliminated. Instead, I occupied a round-the-clock world bounded by one neglected child, one sick child, pediatric oncologists and chemotherapeutic reactions. I never said, ‘poor me’. I just didn’t have the time.  I do seem to be whining a bit, though. Please, Sue, stop it!

Understanding that evil had entered our lives was another matter. I was unwilling to accept the enormity of Valerie’s illness although I knew I appeared level-headed and well-informed. I couldn’t talk to Ed about it. He refused to speak of his anxieties and I seemed powerless to articulate my thoughts. I did not recognize that his reticence and my bewilderment in the face of our daughter’s cancer demonstrated fear.

My husband was on the road daily, selling his various items throughout New Jersey. He was naturally gregarious with others, though not with me; funny, huh? and seemed to like the give and take of the business world. I was left to fend for myself in a household that was no longer typical. It reminded me of my younger days after I lost my mother; that household was not typical either.

I needed something. And so, an at-home method to skim the treetops surfaced for me as well. Enter the doppelgänger named Suzann. Unknown to me, she had become my closest ally.

I was not aware of any shifts in my mental processes. Maybe Suzann was always there, invisible and weightless since my days without a mother or, maybe, she was created on the spot because I needed her.

When my father held sway over the Bresler household I was often called Sue, Suzy Q or pain in the neck, that last mostly in a joking fashion. But when Daddy had something serious to talk to me about, he would call me by a different name. He’d say, “Suzann, please come here. I want to talk to you.” It wasn’t often but I would go to him with a bit of trepidation. What had I done wrong?

“Suzann,” Daddy would say, “I got a call at the store this afternoon from your teacher. She tells me that you’re talking in class when you shouldn’t be.”

“Oh, Daddy, I was just asking Billy for a piece of paper!”

“It was more than that, Suzann, and you know it. Let’s not go any further with this. Just stop it.”

And I stopped it. My father made it known, by calling me Suzann! that I had to stand tall and straight, no fooling around, no way.

Sue and Her Doppelganger

Many years later, the doppelgänger, Suzann, the name given to her through some unfamiliar psychic development, also allowed me to stand tall and straight. That was the plan . . . tall and straight . . . .  My father’s voice coming from the past along with the freshly minted Suzann enabled an illness-defined world to exist separately from the normal, more commonplace one.

Without any knowledge of doing so, I easily shifted gears moving back and forth between a range of responses. Free from overt calculation, I locked the medical facts away in shadowy Suzann’s gray matter, ready to burst forth when required, to intellectualize the facts and detach them from my emotions.

Suzann helped me to absorb what the doctors said as well as to grasp what I read. She enabled me to recognize most of the risks inherent in cancer. I was able to think and talk logically. I became adept at taking care of my sick child, my healthy child, my husband, and the household chores. I lived as if nothing much were wrong though my family was in great jeopardy.

It was my way, a new way. It was a useful, neurotic split.

I could not reconcile the everyday image of my daughter Valerie kneeling on the floor of her room—toys strewn around, baby-talking to Raggedy Ann and Snoopy, scolding them, cuddling them—with the notion that she might be taken from me. That nature’s well-known ranking order, a straightforward requirement of ‘parents first’ could be disregarded.

As I retreated from this conflict Suzann advanced to the front. For example, during one office visit after Valerie’s diagnosis, the three of us, Suzann, Sue and Dr. Wolff, discussed medical issues. Dr. Wolff said, “Mrs. Goldstein, chemotherapeutic agents, as you know, have side effects. For example, Vincristin, one of the drugs Valerie is on, creates nausea.” Suzann asked, “What about the rest of the chemicals, Doctor. Tell me again what their side effects may be.”  The other self, the terrified mother, Sue, zoned out while watching the gray rain slap against the doctor’s office window.

Suzann sometimes failed. The senior oncologists, mostly men, weren’t interested in me without Ed by my side. “I’ll wait till Mr. Goldstein comes to the hospital tonight, Mrs. Goldstein. The three of us will discuss the results of the tests we took this morning. I’ll see you later,” said one oncologist. It wasn’t his fault. Perhaps it was the times. Perhaps. Somehow, I just didn’t have the spunk to argue with him, to ask why he wouldn’t talk to me without my husband, to insist he talk to me whether or not my husband was there. Suzann didn’t debate the issue either. Where was she? She’s left me high and dry.

But, in most cases, Suzann was with me. I want you to understand what happened, what enabled me to function.

Several years later, when I was finally allowed to stay overnight at Babies, the young residents, my temporary friends both male and female, would walk into Val’s room and sit at our sleeping daughter’s bedside. These new M.D.’s would talk calmly to me about the dangers of immune suppression, children who were near death and statistics related to different cancers. They told me that Ewing’s sarcoma had a ten percent survival rate.  As if Valerie had the chicken pox and all she needed was an oatmeal bath! I asked questions, listened to the answers and asked more questions.

Suzann made it easy for me to talk candidly. She knew I had to have the facts even if I didn’t want to face them. I learned a lot that way.

Ed, my friends and the family weren’t aware of the differences between Sue and Suzann. Even I, sensing that something about me had changed, wasn’t aware of the finer points but the strategy was in place and seemed to work. I look so grounded, so capable all the time. Or so hard. Because when others cry, I’m dry-eyed. Now, is that normal? Would my mother have acted that way?

Hovering perhaps a little too much, I tended to both my girls while Suzann watched and took over the repository of all my facts and fears. Is Dr. Wolff the best pediatric oncologist around? Will the chemo destroy all the bad cells in Val’s leg? Will it destroy the good cells, too? Will Stacy be okay? How will she react to the inadvertent neglect, the time away from me? Will she hate me? Will my kids’ friends desert them? Will my friends desert me?

Suzann protected me from those alarming concerns. Sort of.  Suzann wasn’t foolproof, as I had learned. Mostly, though, I carried out my roles as mother, wife, daughter and friend with confidence. From time to time a whisper of reality escaped and infused me with dread. But I was strong. I tamped the fear down.

I was able to hug my children, give them wet, icky kisses, play with them and generally forget that I wasn’t like my next-door neighbor or my best friend across town.

###

FIGHTING BACK: One Mother’s Story–Chapter Four

Posted By on May 15, 2017

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.

###

 

 

 

FIGHTING BACK: One Mother’s Story–Chapter Three

Posted By on May 1, 2017

 Val at three

“Stacy, hon. Daddy, Valerie and I have to go into New York again. The doctor wants another look at her leg.”

No questions asked; no further explanation needed.  I wondered briefly about my mother; how would she have handled this? But she was not there for me: not to rely upon or to babysit, to cry with me or to advise. I told Stacy we’d be back later that day and would pick her up at our friend Phyllis’s house. She’d play with Johnny, Phyllis’s son. He was a year older than Stacy but they had fun together.

It was early Friday morning, four days after our first visit to Babies. I walked out to the curb with Stacy, kissed her goodbye and watched as she boarded the bus to kindergarten. Reluctant to face the day yet too cold to stand outside any longer, I ran into the house and called out to Valerie, “Come on, Pussy Cat. Let’s get you dressed.” I had already told Val about our return to Babies and her impending biopsy. I didn’t know how much she understood.

Ed and I spoke little during the hour and a half trip, our anxieties carefully hiddden from each other. With Valerie asleep in the back, the ride was strangely quiet.

Once at the hospital, we checked into the ninth floor’s pre-surgery unit where an aide walked us to a small room for one and in the room, I slipped Val into the hospital gown given to me earlier. Ed sat down on the bed next to Valerie. Space was limited. I leaned against the bed’s foot rail.

“Let’s color this sketch of a donkey, Val,” I said. “Here are the crayons. I’ll do the top hat in black, Daddy will do the legs in brown, and you’ll do the body in . . .  what color do you want, sweetheart?” After a while, a resident came in to give Valerie a mild anesthetic.

Although the injection was over quickly, Val’s tears outlasted the pain by far. She was not a big eater and had not missed either the food or drink withheld per surgical instructions. But now, poor little thing, she was clearly disoriented by the unfamiliar surroundings and kept repeating the word ‘home’ in between teary hiccups. A nurse peeked into the room. She said, with annoyance in her voice, “You’re not allowed to sit on the bed, Mr. Goldstein. It’s a hospital rule.” Her tone added to our edginess.

Too quickly, a male attendant came by to take Val into surgery. Ed and I hugged and kissed her; our daughter too drowsy now to protest. The attendant pushed a gurney into the room, transferred Valerie onto it and began to wheel her out the door. We backed away but followed close behind until we saw Val and her bed move through the double doors. Then, she was gone.

Those doors look too banged up, the windows near the top foggy with scratches. Why can’t we go with her, for a little while anyway? Okay. She’s having a biopsy, not major surgery. It’s just a little cut into her leg. They’ll find out what’s wrong and fix it.

A different nurse urged us toward the elevator. She told us about a waiting room off the hospital’s main lobby. “You’ll see it,” she said. “It’s right downstairs.” However, it wasn’t until we stopped several people along the way that we found it.

The waiting room, compared to the reception area at the Atchley, had table lamps that cast drab shadows. The bright lights that had hurt my eyes were missing here. Can’t please you, Sue! The waiting room’s furnishings were battered-looking, the sofas and chairs upholstered in dark navy. A large, squat table marred by an ugly cigarette burn was stranded uselessly in the middle of a lackluster carpeted floor. Two windows on the far wall gave a close-up view of the neighboring building and its scruffy exterior.

The half dozen people in the room were silent except for a petite, elderly woman who sat in the far corner muffling sobs that broke the strained silence. No one made eye contact. One man, ensuring no interaction with strangers, stood in front of the windows, his back to the room, his body rigid as he faced the dirty glass.

We waited once more.

“Okay, hon,” I said to Ed. “Tell me. How long can a biopsy of a little kid’s leg take. She’s so small.” No answer from my husband. But then, I didn’t expect one.

Unable to sit still, I wandered around until I saw the ladies’ room. I walked in. The bathroom was as cheerless as the waiting room, but it was clean and active. The in-and-out flow of humanity, with its different sounds and shapes, was an acceptable change of scenery for me. I made the trip three times in the hour and a half since we last saw Val.

Once more, I walked back to the waiting room, sat down on a couch and tried reading my book, Mary Renault’s “The King Must Die”. My thoughts pushed in. What if it’s malignant, if she has a big hole in her bone? It doesn’t make sense. She’s too young. Never heard anything like this. 

The sentences in my book turned into a kaleidoscope of madly shifting pictures: Val and Stacy running through the house, Val chasing Stacy, Stacy chasing Val, both skipping, hopping, jumping, laughing.

Ed moved about as well but his walks took him in a circle round the main lobby. Meeting back in the waiting room after one brief trip, he said to me, “You’re smoking a lot. You hungry? Want something to drink?”

“No thanks.” I stubbed out my Winston, got up and walked away. I wanted some water.

After I had a sip at the water fountain, I returned to the waiting room and rested against the doorway to people-watch. It was then that I saw Dr. Gagnon stepping out of the elevator, easily recognizable in a long, white lab coat that outlined his chunky body. A rusty red tone darkened his face, suggesting a recent sun-drenched vacation. The doctor’s walk was rushed and inattentive, head tilted forward and hands clasped behind his back. Val’s surgery was over.

I didn’t have to hear the words.   

Ed had seen him, too, and was now standing beside me. The doctor looked up, nodded, said to us, “Please come with me.” He motioned us to a room several doors away. It was a children’s playroom with a low round table surrounded by four scaled-down chairs. We both sat down but Ed quickly stood back up. The doctor remained standing and though not tall, at that moment he towered over me. He said, “I’m sorry to say that the bone tissue I removed from Valerie’s leg is malignant.”

  Cancer!

I sat immobile in the child’s chair, my arms around my knees, unable to take a deep breath. I stared at the floor, at the dirt spots on the linoleum, at the scuffed legs of another small chair nearby, at a pair of highly polished brown loafers. The doctor had small feet.

Ed, his face white, asked Gagnon some questions.  I tried to listen but the sounds melted into the air.

“I can’t hear you, Eddie.” Struggling to my feet, I shoved the mini-chair away. “I want to see Valerie. Now please.” Ed and I followed the doctor as he led the way to our daughter.

My chin started to quiver in the elevator. And then my teeth joined in, top and bottom banging against each other. I squeezed my lips shut, but I still heard those teeth banging in my ears; I was sure everyone else heard them too. Or maybe the sound was simply buried deep in my brain, their clattering solely for me to hear.

I had no tears, only the quivering chin and the banging teeth. I raised one hand to block the lower part of my face, hoping to stifle the sound and hide the weirdness, the betrayal of control. Ed nervously cracked every one of his knuckles, a dissonance I normally complained about. He and I stood side by side in the elevator, yet I felt alone, intent on curbing my body’s unfamiliar sensations. I didn’t think to reach for my husband’s hand or to move closer to him. He didn’t reach out to me either. We did not speak. We just stood there cut off from each other as the elevator inched upward.

I concentrated on the floor numbers above the elevator doors as they lighted one by one in tireless sequence. My mind chaotic, I wondered why the damned elevator diligently stopped on each floor whether or not anyone got on or off. Why not just shoot straight up through the clouds? Away from here, away from the desperate pain that I sensed would be with me forever.

On five, one woman plunged through the sliding doors as if certain they would close before she plunged through. Again on six a young couple raced out. On nine, we did the same.

The ninth floor—Valerie’s floor—was U-shaped and bright, with fluorescent lights running the length of the ceiling. We passed the nurses’ station and moved fast into the post-surgical ward, a room narrow but long and packed with youngsters of all sizes. They were dressed alike in striped hospital gowns and sitting or lying inside identical, oversized metal cribs. White bedding and blue blankets covered the mattresses. Filling most of the floor space, the cribs were each an exactly measured distance away from its neighbor.

As the young patients visited with their families or slept or moaned, all evidence hinted at medical trauma: bandaged limbs, transfusion bags, oxygen masks.

Valerie saw us approaching and stood up in her crib. “Sit down, sit down. You know you’re not supposed to stand on that leg, There’s a new cast on it!” a nearby nurse exclaimed. She firmly sat Val back down. Pride assaulted, my daughter’s face crinkled and tears tumbled down her cheeks. Her arms shot out to me in the familiar, demanding pose that, this time and forever more, sent tears to my eyes. I began to run to her. I needed to hold my child as much as she needed to be held. I grabbed her, remembering at the last minute to be gentle. Ed pressed in beside me and got his own piece of her. Even the doctor tried for a kiss. He was greeted with considerably less enthusiasm.

Ed and I each held one teeny hand. I talked to her, my words a puzzle even to me. “We’re going to get you some new toys to play with while you’re in the hospital, sweetheart. You’ll be here for a few—no, no, honey, you can’t stand up. The nurse told you that. There’s a playroom you can go to, with clay and finger paints, and—no, you can’t have any juice. Not right now. You can suck on some ice chips though. You like that.”

I don’t know how long she’ll be hospitalized or what kind of cancer it is. And that word, Prognosis! It’s so harsh sounding. Can’t ask that. Don’t really want to know. How is my three-year-old going to handle this? How am I going to handle this?

I turned my mind’s switch to off and gave my daughter a big, mushy kiss. She wiped the wet away from her face and I laughed. But what would we tell her? How would she understand being left here among strangers, strangers like that nurse who hollered at her. Ohmygod!

Worn out from the surgery and its aftermath, Val fell asleep before visiting hours were over. One weary-looking nurse told us, “Hospital policy doesn’t allow parents to stay overnight with their sick kids. There isn’t any place for them to sleep.”

“Besides,” she added, “the staff needs room to move around easily without any interference from others, and the children are more upset when the parents are here.” Really?Upset? That’s nuts!

It wasn’t right. She was a baby, confused, uncomfortable and away from her family for the first time. I knew it wasn’t right. But the hospital had its policy.

Ed and I each kissed Valerie gently on the cheek and whispered “So long, sweetheart, we’ll see you in the morning.”

On the way home, we stopped at a diner for something to eat. I thought that sitting down and eating might help ease our way into talking. We ordered and before I knew it I was crying, the tears coming down my cheeks in torrents. Ed looked at me in astonishment. With thinned lips he said, “Stop crying, Sue. You’re in a restaurant!” And I stopped. Just like that—the final nail in my coffin of tears.

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