FIGHTING BACK: One Mother’s Story–Chapter Fifteen

Posted By on December 4, 2017

Val was home: the lung surgery behind us; the stress of her hospital stay over; the Jewish holidays ended. But I continued to brood over the ‘remove the lung’ discussion with Dr. Wolff.

Although Valerie’s right leg was amputated above the knee one and one-half years ago to stop the spread of her cancer, it spread anyway. It began with the initial biopsy in December 1969, then the amputation in January 1973, next came the lower right lung in April 1974, and, months after that, to the rest of that lung, in other words, her entire right lung. I could not get my mind away from the horror of it and agonized over our decisions. She now has only one lung and one leg. MyGod. We had no choice, I know. But what do we do now?

When the pediatric surgeon removed the rest of Val’s right lung, he began with an incision that signaled the enormity of the operation. The scar’s size and shape was hidden until the bandages came off just before discharge. It started in the middle front of her narrow chest, scooped down under her arm, around to her back, and up past her right shoulder blade forming a giant U.

My bouncy little eight-year-old recovered but in slow motion. The three-day stay in the ICU included intravenous lines and drainage tubes sprouting from her small body; she screamed when long needles were inserted into her chest to draw out the buildup of fluid; and the sharp surgical pain brought on tears that caused more pain. Ohmygod! What is happening to my daughter? Suzann took over telling me that all of this had to be done, but even she couldn’t stop the bewilderment, the agony that was surrounding us. The misery  . . .

Although Val’s energy soon revived and eased the immediate effects of surgical trauma, the rest of the healing took longer than usual. I followed in her labored path, my psychic state disrupted although not by the surgeon’s knife.

Right after the diagnosis of Ewing’s sarcoma in 1970, I began to hyperventilate at night when it was quiet and time for sleep. I could no longer bear the dark. I solved the problem at bedtime by reading with a book light until the words were unrecognizable and my eyes almost closed. During the day I’d have rapid heartbeats. However, if I was busy taking care of Valerie, trying to pay attention to Stacy or doing a multitude of household chores I felt fine, reasonably fine anyway. Tired, but okay.

Ed was tired, too, but otherwise seemed symptomless. We talked about facts—chemo, side effects, medical appointments—but rarely about emotions and never about fear. This is wrong. We have to talk about these things. I need the comfort of knowing that he understands, to hear him say it out loud. To have him acknowledge that he’s scared too, that he feels the same sense of isolation that I feel. We both feel that, don’t we? But I can’t talk to him. Suzann wants to know why not? But I had no good answer.

So my husband reacted to his younger daughter’s illness by working harder than ever in the business although we both strained to keep our little family upbeat.

Valerie, looking pale and scrawny, settled back into her bedroom and re-established her place on the floor in front of the den’s TV. But she was uncommonly cranky and without her usual spirit. Most telling, she was not interested in playing with our new dog, Buster. Once fully recuperated, though, I expected Val’s sprightly self to return.

Stacy, my charming and mild-tempered ten-year-old, would return in her entirety too. Unfortunately, that persona had vanished. Merely for the moment, I hoped. In its place was an unfamiliar youngster who appeared anxious and slightly to be honest, more than slightly hostile. Oh boy. I do love her but all those tears and that attitude of hers is driving me nutty.

Much as I hated to admit it, an atmosphere that was usually warm and loving now jangled with the voices of two kids fighting, crying and complaining, sometimes all at the same time. Over and over I heard, “I don’t want to.” “She won’t move,” “Give it to me, it’s mine,” or, “She started it,” I need to stay calm. StaycalmStaycalmStaycalm.

Still, my voice shrill, I’d say, “Stacy, stop that immediately or you’ll be sent to your room without dinner. You know she’s not feeling well!”

Of course she knows that but send her to her room without dinner? When have I ever done that? I’d then change course and yell. “Just go to your room, Stacy,”

“I will,” Stacy shouted. “And I’m not coming out ever again!” I thought that sounded good.

Punishment had become erratic. I became erratic. Only when I felt extraordinarily pushed did I forget that one of my delicious kids was sick. While I knew they were both reacting to the physical and emotional shifts brought about by long-term illness, the shrill noises emerging from their mouths would briefly white-out any sensible analysis of their behavior and I would say between gritted teeth for what seemed to me the umpteenth time, “Go to your rooms immediately. Both of you!”

Harder to deal with than the crankiness, though, was the nonstop worry about a cure. We called Ed’s cousin Irv, a cardiologist in California, for guidance. He spoke, for a second time, to his medical colleagues but uncovered no new information for us.

Never!

Ed scoured the newspapers for anything that sounded applicable. One visit, he brought Dr. Wolff an article headlining a miraculous  new cure for Ewing’s that was discovered in Japan. Ed read the headline in the National Enquirer while checking out at Shop-Rite. Dr. Wolff called the company in Japan and then politely told us it was not relevant. Thank goodness he was nice about it. I’d have punched him if he sneered.

I called different oncologists: “What else can be done? How do we stop it? What about other treatments?” Over and over, I was told to stay with Wolff, that he was at the top of his field, that he knew what he was doing. The results: Valerie remained Wolff’s patient.

Before the next course of chemo was due, Ed again mentioned Cindy, his customer’s daughter. Cindy was diagnosed when she was seven with osteosarcoma, the most common of bone cancers. She had been treated at Memorial Sloan Kettering but her last batch of X-rays showed that her body was filled with tumors. Cindy’s parents were told to take her home and make her as comfortable as possible. Her doctors could do no more for her.

Then, Ed told me a little about Dr. Andrew Ivy and Krebiozen which was an unapproved cancer drug given intramuscularly. This time he was persistent. “Let’s go see her, speak to her family, get the whole story. I know her father, Eric Levinson, very well. I can call him. He says his daughter is healthy. We’ve got nothing to lose.” Suzann said, in a matter-of-fact tone, “Let’s go.”

I was now afraid of everything. I had never heard of Krebiozen: afraid to add one more thing to Val’s course of medications; afraid that it might backfire and harm her; afraid that Dr. Wolff would drop her as a patient if he found out. Yet I went anyway. If there was any chance that the drug might work . . .         

Our housekeeper Erin, stayed with the girls the following Saturday, her day off, so that Ed and I could meet with the Levinsons who, we discovered, were more than ready to discuss their daughter’s illness with us. And, fortunately for them, Cindy’s grandfather was a pediatrician. When he heard the prognosis, he began to search the medical literature for anything that might slow the progression of his granddaughter’s disease.

The grandfather soon found Krebiozen, an unproved but highly touted anticancer agent and its promoter, Dr. Andrew Ivy, who lived in Chicago.

Krebiozen, supposedly made from the blood of horses inoculated with a bacterial organism (Actinomyces bovis) was introduced to Dr. Ivy by Dr. Steven Durovic, a Yugoslavian doctor newly arrived in the United States. In Chicago, Dr. Ivy and one of his associates tested the controversial substance on themselves and confirmed it as nontoxic. Since Dr. Ivy was renowned in scientific circles, Cindy’s grandfather flew to Chicago, met with him, asked many medical questions and came back home with a six-month supply of the drug.

The pediatrician grandfather started Cindy on a regimen of daily injections and after six months brought her back to the New York oncologists who had originally sent her home with a prognosis of ‘three more months.’ A complete set of bone X-rays and a CT scan were taken. No tumors were found anywhere in Cindy’s body.

The oncologists and radiologists were amazed and pronounced Cindy in good health because of a spontaneous remission. Grandpa said, “You sent her home six months ago diagnosed with osteosarcoma without any treatment, without hope. I’ve been giving her daily injections of Krebiozen since then, and you tell me “spontaneous remission?” The doctors repeated, “ .  .  . spontaneous remission.”

Grandpa and Cindy went back to New Jersey. He continued giving her Krebiozen. Grandpa said he didn’t know when to stop. That would be fine with me.

Cindy herself raised our expectations further. Her father walked us across the street to their swim club and we spotted her immediately, her bathing suit wet from a recent swim in the pool. Cindy was an above-the-knee amputee like Valerie and swung smoothly and speedily on her crutches, just like Valerie. And Cindy was bright and sparkly just as Valerie was, and would be again. Ed asked them how to get in touch with Dr. Ivy.

That Sunday morning Ed and I spoke to our local pediatrician, Dr. Sol Cohen, and asked him what he knew about Krebiozen. Dr. Cohen said the drug seemed harmless and it won’t interact with the chemotherapy Dr. Wolff would prescribe for Valerie when she recuperated from her surgery. And, possibly, it might help.

We decided to give Krebiozen to Valerie ourselves since it was unlikely that a medical professional would inject the drug.

But Ed couldn’t give the injection; he just couldn’t do it. He apologized to me but . . . “I just can’t do it, Sue.” “Well, who’s going to do it?” I said. “No doctor will. You know that, Ed.” He just looked at me. “Fine. I’ll do it,” How am I going to do this? Ed can’t. I doubt if I can. OhGod.

The thought of giving my daughter the injection unnerved me and sent me off on another round of crazy questions. Who’s going to show me how? She was so thin. What if I missed the muscle and hit . . . what? Bone? GoodGod.  But what could I hit on an arm or leg that would be dangerous? Probably nothing. Probably?

Dr. Cohen was a good and kind man and would teach me how to give the injection. He also promised that he wouldn’t say anything to Dr. Wolff. Thank you, Dr. Cohen. I’m so grateful. Wolff will drop us if he finds out. I know he will. Krebiozen is so unorthodox. He’ll think we’re nuts, that we’re jeopardizing Val’s life . . . are we?

That afternoon, Ed called Dr. Ivy’s office, spoke to his associate, and made a date to fly to Chicago. At Ivy’s lab, Ed gave a donation of one hundred dollars, picked up a three-month supply of Krebiozen and flew home.

And there I was, facing all those vials and needles for the first time when along came a vicious cramp in my stomach—where did that come from? Huhh. The cramp passed and after making sure I had what I needed, I convinced myself I was ready.

I called Valerie. “Hi hon, it’s injection time. Let’s go,” I said, enthusiastically. And I did it. Val didn’t cry too much and I was grateful I didn’t hurt her, too much. It was the same from then on.

I laid out the sterile paraphernalia on clean paper toweling—the syringe, an alcohol pad, the vial of Krebiozen, a needle to insert into the vial, a Band-Aid—I’d lift Val up and sit her on top of the bathroom vanity next to our sink. First, I demanded a kiss, landing one or two on her cheeks, nose, and on the top of her head. Then I hunted for an injection site until I found an area of flesh that suited me. I cleaned the site with the alcohol pad and allowed it to dry. Then I injected the needle straight down in a dart-like motion and pushed the plunger in. Ohboy! I put a bandage over the puncture, demanded another kiss or two and brought Val down from the vanity.

With time, I became reasonably adept at it. I do believe, though, that I dreaded those injections more than Valerie did.

In fact, Valerie seemed proud of my new expertise. So proud, in fact, that at our next appointment with Dr. Wolff in mid-July, my daughter, who seldom talked to him, said in a haughty voice, “My mommy gives me injections, too.” NO NO! Oh, Val. Gee whiz. Please! Don’t say that again. I couldn’t look at Dr. Wolff as he prepared the chemo. Take a deep breath, Sue. Get your heart beating again. This is idiotic. Why are we so afraid of him? All we’re doing is trying to help our daughter. Will he stop treating her if he knows about the Krebiozen? Of course not. No?

Perhaps the doctor didn’t hear Valerie or maybe he just didn’t want to respond. Did Dr. Cohen tell him even though he said he wouldn’t? I don’t know but, somehow, I think Wolff knew about the Krebiozen and chose not to make an issue of it. In any case, he said nothing. Valerie didn’t bother mentioning my medical skills again.

I continued to give Val her daily Krebiozen despite the various hard and lumpy injection-battered spots on her upper arms and thighs. On occasion I hurt her. She cried but forgave me instantly although I couldn’t forgive myself.  Yet I resented Ed’s inability to share the burden with me. What am I doing? What if this is . . . what if . . . could this be the absolutely wrong thing to do?

The next appointment with Dr. Wolff was in September, two months after her first daily shot of Krebiozen and one month into the new semi-monthly chemo. Val had been complaining, once again, about her leg, this time her left leg. Ed and I both knew something was wrong but not sure what it could be. After all, it was her good leg.

A bone scan was scheduled and we headed straight to X-ray with Val close beside us. A while later, the scan taken, Ed and I paced back and forth in the hospital’s downstairs reception area waiting for the results. Val was in the small room next door finger painting.

The doctor soon came out and walked back with us into his office. It was an unusual thing for him to do and we knew it.

The scan showed a shadow on her left leg. Her good leg. Her only leg.

A biopsy was scheduled; another metastatic tumor was confirmed.

I had given Val an injection with a substance that was useless. My confidence in Krebiozen gone, my part in those injections came to an end. Still, I worried about Ed’s reaction. He was so sure that it would work. I laid my hand on his cheek. “Eddie, if you think the Krebiozen should be continued, you’ll have to give her the injections yourself, please. I can’t do it anymore, honey. It’ll be up to you.”

“I can’t do it either, Sue. I just can’t,” he said. We never discussed it again. Valerie wasn’t Cindy. And so our daughter received no more Krebiozen.

Yet I wondered about Cindy. How was she? Will she marry? Will she have children? Will she remain tumor-free? I would never know.

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Editor: Edwin C. Goldstein

About the author

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

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