Chapter 55
Deterioration
During the exhibition in Rehovot, Lily shone. She felt she was repaying a debt to another group in society. If she could, she would have done even more to help them.
The reviews of the exhibition were mixed.
Some thought it was groundbreaking – both conceptually and in presentation.
But there were also those who said it was brazen of Lily to bring society’s sick into the museum halls, especially since it was located in a Memorial Museum.
Lily took the criticism very hard and could not make do with the positive voices.
She refused to take the exhibition’s guestbook home.
A few days after the exhibition ended, a tragedy occurred that had a profound impact on Lily.
Since we had moved to Tel-Aviv, she had made a point of visiting her aunt Mira, her father’s sister, twice a week.
They were extraordinarily close. They shared a mutual admiration and deep love.
Despite the age difference, Lily related to her like an older sister.
One morning, while I was working at the base at Parkview Medical Center, the phone rang. It was Lily’s father.
“Mira, my sister, was killed in a car accident,” he said in the most laconic way possible.
“What do you mean?” I asked, stunned.
“Mira was killed!”
“When? How?”
“She went down to the grocery store this morning, and someone ran her over. I don’t know the details, but Mira is dead. And I’m asking you to be the one to tell Lily.”
“What? Me?”
“Yes – you tell her.”
Of course, I agreed. I was deeply sorry for the loss, and I could already imagine how her death would affect Lily. All that remained for me was to carry out the incredibly difficult task I had been entrusted with.
On my way to the College of Art and Design, I agonized over how I could break the terrible news without shattering her completely.
When I arrived, I had to wait until the break. When she saw me, she immediately sensed, probably from my expression, that something terrible had happened. I can’t hide my feelings from someone who knows me so well.
“What happened?” she asked. When I shook my head, she asked without flinching if it was her brother Saul, the pilot.
When I shook my head no and said it wasn’t him, she immediately asked if it was Mira.
The moment she said the name, tears filled my eyes.
Lily understood. I didn’t have to say another word.
She told me that that very morning, before going to the College of Art and Design, she had felt that something terrible had happened to a family member.
And when she saw me, she wasn’t surprised at all.
She understood, and it was nearly impossible to hold back her tears.
Many hours passed before she calmed down.
Mira had been single, without a husband or children, and Lily had been like a daughter to her. Throughout the shiva, the seven-day mourning period, Lily didn’t return home. There was no reason and no way to separate her from her family.
“I don’t feel well,” Lily admitted to me a few days after the shiva.
“On my way to the College of Art and Design, I’ll stop at New-Hope Medical Center Hospital.” I didn’t say a word. I knew that if she “volunteered” to go to the hospital, she must really be unwell.
“I’ll update you as soon as I know,” she promised without me asking. I wasn’t surprised when she called to say she was being admitted.
“I’m on my way!” I said immediately and left the base.
When we met in the ward, Lily told me that her markers had worsened: her hemoglobin had dropped and her urea had risen. At her bedside lay a stack of books she had brought from home, as if she already knew this hospitalization would be longer.
The conversation with the deputy director was anything but encouraging. Within a relatively short time, there had been a deterioration in kidney function, and one of her heart valves was no longer functioning properly. Another parameter had been added to her already complex medical situation.
“What’s her creatinine level?” I asked.
“Be her husband, not her doctor – remember?” the deputy reminded me, consistent in her demand. Once again, she said it matter-of-factly, without compassion.
I felt like she had both slapped me and told me to disappear, to stop asking questions, to stop being present. I hated her request, but I felt she left me no choice.
“She’s not very nice!” I said to Lily when I returned to her bedside.
I wanted to tell the deputy that Lily was not just a set of lab values, but a living person, the most precious one to me – that more than anything, I wanted her healthy – and I also wanted to ask how she couldn’t understand that.
As I paced the room, the deputy came in again.
I thought she had come to apologize but instead, she ignored her earlier harshness and told us that according to the New England Journal of Medicine, there was a new drug for her illness, but she would need to sign an informed consent form to participate in a trial.
“If you sign, she can get it,” she concluded.
I didn’t understand why she hadn’t told me that in the first place.
Why knock down and then lift up? Still, this was the hope I had been waiting for – something to hold on to.
Lily agreed immediately. She didn’t even ask questions.
She signed the form. We both ignored the list of side effects the deputy began to enumerate.
That evening, Lily received the drug intravenously.
“It burns terribly,” Lily told the nurse administering it.
“This is the first time I’m giving the drug like this,” the nurse replied. “Usually, it’s diluted in an infusion.”
“I’m willing to bear the pain, if it will improve my condition,” Lily murmured.
I stroked her hair. I loved to play with her soft curls. Suddenly she lifted her free hand, grabbed mine, and began to groan. The pain in her arm was unbearable.
“Next time we’ll dilute it, I’ll tell the doctor…” said the nurse, seeing her suffering.
“If this is the only way to treat me, I’ll endure it. I have to be healthy – for you!” she said to me.
“You know this will pass. Look, the bag is nearly empty,” I tried to distract her while caressing her free hand, hoping it would help.
“It’s all right. I’ll manage,” she said.
We couldn’t hide our tears.
When the bag was empty, the nurse connected her to a saline infusion. Lily thanked her and smiled, “What a difference.”
“The urea dropped!” the deputy announced triumphantly the next morning, smiling from ear to ear.
“To how much?” Lily asked. I didn’t dare.
“To near normal – and even lower.”
It sounded too good to be true. Especially since Lily felt no change.
“So the drug is working!” the deputy added proudly, as if the invention were hers.
“Maybe it’s a mistake. Maybe repeat the test. Lily feels no improvement,” I said outside the room.
“You’re being her doctor again!” she scolded me.
I swallowed hard and went back to Lily. Nothing had changed. She still looked pale, on the verge of gray. I didn’t believe the results.
“The deputy is calling for you,” a nurse told me in the evening.
“She probably wants to scold me again,” I said to Lily nervously.
“Go, go – she’s fine with me,” Lily reassured me.
I walked slowly to the doctors’ room, not knowing what to expect. To my surprise, the deputy received me hesitantly.
“I’m sorry. They switched the test tubes,” she admitted. “Her condition has actually worsened.”
“What?”
“Her urea is much too high. We need to start dialysis.”
“Dialysis? When?” I asked, feeling as if the sky had darkened and fallen in on me without warning. Images from that first on-call night in Eilat flooded my mind. Lily. Dialysis. Eilat. Dialysis. Cardiac arrest. I closed my eyes. I wanted those awful images to vanish forever.
“Today. The boss will come this evening and talk to you,” she said.
“Are you sure?” I pulled myself together.
“Yes. Before he left, we discussed Lily. We’ll start with peritoneal dialysis.”
“I see. So it’s come to dialysis…” I felt like we were spinning out of control, and I tried to swallow a lump in my throat that wasn’t there.
I knew dialysis had already been considered earlier, and I was surprised they hadn’t prepared a shunt, which would have eased the process. I understood that if I even dared raise the subject, the deputy’s cruel reply would be the same: “Be her husband!”
It turned out her condition dictated the pace.
“Only if there’s no improvement with peritoneal dialysis will we try another type. Her condition isn’t good. It’s deteriorating,” the deputy continued.
I didn’t respond. My thoughts were spinning.
As soon as she left, a torrent of tears burst from me, accompanied by uncontrollable sobbing.
Just four years earlier I had sat in this room as a young doctor, hoping to be accepted as a resident.
Here I met Lily. And now, four years later, she was lying here again as a patient, and I was her husband, sobbing.
“She mustn’t see you like this,” the deputy said, reappearing suddenly and surprising me.
“I know. Who will tell her what’s coming?”
“The boss. They have a special bond, far beyond doctor and patient,” she replied.
I knew that, but I couldn’t respond. She left me alone in the room.
Only when I had no more tears left did I rise heavily and wash my face.
I didn’t want Lily to know I had been crying.
As I walked to her room, I thought about the optimism we had lived with and the uncertain future ahead of us.
I worried about what Lily was about to go through, but I found no answer. I was utterly confused.
When I entered Lily’s room, the boss was already there.
He explained to her what the coming days and nights would look like.
He spoke about starting with peritoneal dialysis.
Although he knew standard dialysis would help much more, he decided to try peritoneal first. As he spoke, he held both of her hands in his and stroked them.
I stared at them, still struggling to absorb the blow.
“Go, eat something – you haven’t eaten all day,” Lily told me when two doctors with special equipment entered her room.
“All right,” I said and closed the door behind me.
Who can eat in such a situation? I wondered sadly.
They locked the door. A short time later, her cries of pain reached me, piercing the stone walls and thick wooden door like a drill.
It seemed she was undergoing a procedure far more painful than the burning she had felt with the so-called miracle drug. If only they had prepared her earlier for regular dialysis, this torment could have been avoided.
“It’s all right, it’s all right,” one of the doctors said when he opened the lock, trying to calm me.
“You can come in.”
“I’m sorry,” she said, half crying, half laughing. “It hurt so terribly.”
“Is it over?”
“Yes.”
“Look,” she said, lifting the thin blanket to show me the dialysis tubing. “The pain is gone.” She wiped away her tears and smiled a radiant smile.
“Didn’t they anesthetize the area?” I asked angrily, frustrated by her suffering.
“Apparently the anesthesia didn’t take very well.”
“How long will you need to be like this?”
“A few days. They’ll monitor the blood values and decide.”
“And what do you want to do when you get out?”
“Gallery tour,” she answered immediately. This time, we both laughed, tears of release mingling with the laughter.
A few days later, Lily was disconnected from the dialysis and discharged.
Her tests had improved. Of course, she insisted that we go on the gallery tour she had promised herself while hospitalized.
Already in the elevator, she said that after the galleries we should go to Bnei Brak, since she might soon lose her hair and it would be good to prepare a wig, at least according to what the department head had told her.
“Maybe cut your hair short?” I suggested. I knew that women with cancer often cut their hair before starting chemotherapy, which causes it to fall out.
“All right, but not before I do a new body-art work.”
“What kind?”
“You’ll live to see it.” Her mysteriousness never ceased, not even then.
In hindsight, her choice of phrase suited the situation all too well.
Did Mira’s death, her beloved aunt, change something in her determination? Did it weaken the fierce resistance she had had toward the illness? I knew there was a connection between emotional strength and physical resilience. But with Lily, it was immeasurable.