Beyond Angeles

A horrible day

On Sunday afternoon, the hospital called us and told us Jefren’s surgery was scheduled for 7:00 a.m. It’s their standard procedure—they don’t know the schedule for surgery until the afternoon before, so that’s when they call you.

Figuring two hours to get there—it only took an hour and a half, but we wanted to allow for us leaving late, and for parking and getting up to the fifth floor—we got up in the morning at 4:30 a.m., to take showers, etc.

Jefren couldn’t eat or drink since midnight—at least that was what he was supposed to do. Instead, he woke up around 2:30, and had “five gulps” of water before he remembered he wasn’t supposed to.

A little after 5:00 a.m., we all got in the car. Janet drove. I meditated in back seat, while Janet and Jefren listened to the radio and talked.

When we got to Iowa City, I wasn’t quite done with my TM-Sidhi* program, so Janet and Jefren went up to Ambulatory Surgery. I came up a few minutes later. By then, Jefren had already changed into his hospital outfit: the gowns with no backs, and a robe that closed in the front. He also got a neat pair of slippers.

They asked us when the last time Jefren ate or drank was, and Jefren told them about the water. Nobody seemed to care about it, so we figured it must be okay. (We weren’t worried about it anyway.)

The three of us waited in an examination room, chatting with the nurse when she came in, playing with the equipment, and joking around. Just past 8:00, they led us off to pre-op down the hall.

Trouble

Everything was going fine, until the anesthesiologist arrived. We’d been trying to keep Jefren calm and settled through this ordeal. It was working— so far, he seemed reasonably calm.

Then the anesthesiologist— one Jefren had never met— came charging into the room in a panic. He grabbed the bed Jefren sat on, quipped a quick “good-bye” over his shoulder, and started to wheel Jefren away.

Jefren jumped up fast. “What about the ointment to numb my hand before the IV?” he asked, frightened. This was not the good-bye he expected. In just two seconds, he went from calm to terrified.

Looking around for help, his pleading eyes met mine.

“What?” the anesthesiologist said. “Oh, we would have had to start that half-an-hour ago. It’s too late now—the doctors are ready for you. If we did it now, the operating room schedule would be messed up for the whole day.”

The man had goofed. He should have been there half-an-hour ago— as we were— to start Jefren’s anesthesia. He wasn’t.

Now Jefren was upset and frightened. We thought we had no option except to go ahead. We learned later we did have an option: Jefren was our son. If we had insisted, Jefren would have had the ointment and the operating room would have adjusted. But we didn’t know that then.

So a terrified Jefren was about to go into surgery, instead of someone calm (or at least coping).

Janet was furious.

“Why did we have to make a special trip up here just to see you people if you weren’t going to even look at the report?” she yelled.

He mumbled something. Maybe it seemed like a good answer to him. Whatever it was, he should have been on top of Jefren’s case.

Luckily, he was a fast thinker.

“What I can do is give you gas first,” he said, “then wait until you’re asleep before putting in the IV.”

That sounded pretty good. (Why didn’t they offer that the other day?)

Jefren thought it was better, too. He relaxed a little. Even so, he was being wheeled away, Jefren looked at us, small and frightened.

The anesthesiologist looked at us reassuringly.

“He’ll be asleep in just a few moments,” he said.

Then he wheeled Jefren away.

Waiting

I really hoped Jefren would be all right.

I felt bad for the anesthesiologist. Everyone at the hospital—staff, doctors, nurses, even the other patients, had been truly supportive and helpful— especially if we looked even a little confused. The anesthesiologist had the same attitude: he’d messed up, but he was doing what he could to make everything all right.

Janet and I watched Jefren being wheeled away. A moment later, he was gone.

We left through the double doors out into the hall. The pre-op room is, unfortunately, on a corridor with only one wall. The other wall is large plate glass overlooking the campus and town beyond. Unfortunately, it is on the fifth floor. Most unfortunate of all is that I am terrified of heights. Anything above the third floor makes me nervous, by the fifth it’s borderline panic.

So walking out the door, I was looking directly off a cliff, well above my tolerance range. That made me even more anxious than I already was.

To make matters worse, we were going to the Day Of Surgery Lounge, located on the sixth floor. Aaaarrrggggghhhh!

Getting off the elevator there, we discovered the lounge was directly above the pre-op room on a similar glass corridor. Crossing the hall, we went through a little entryway into the Lounge. Luckily, there were plenty of inside places to sit that hid the windows.

Just past the entryway, a receptionist sat behind a long, L-shaped desk.

“We’d like a room near the pool,” I told her.

She smiled and asked our names, checking them off on a schedule book in front of her.

She told us Jefren’s biopsy would take about an hour-and-a-half, and we could have a seat anywhere.

“Once the surgery is complete,” she told us, “the doctor will come up and meet with you.”

Janet hadn’t meditated yet. We asked if they had a chapel, but all they had was a meditation room.

“Great,” we said.

But it turned out to be quite far away, in a completely separate part of the hospital. Janet decided to stay in the lounge.

We walked through several roomettes— rooms sectioned off from each other with dividers. The whole lounge was one large room, thoughtfully broken up into smaller sections with room dividers.

Finding an empty spot, Janet sat in a corner with me on her right.

She meditated.

Just after she started, a man came in and started talking.

“I liked what you said to the receptionist,” he told me. “We need to keep a sense of humor during these things.

I didn’t really want to talk— quiet was better for meditating. But I figured Nature organized best, and maybe he was keeping me from worrying.

He told me about his son, who was having surgery. He talked about where he was from and his work, which he loved, breeding hogs.

Mostly, I asked questions. That way, Janet wouldn’t be mad at me for talking.

At 9:40, Jefren had his leg cut. The surgery had begun.

I knew it in the reception room. Suddenly I felt a strong sensation, a sharp tingling, in my right leg, just below the knee. I kept talking, but knew—just as I had when they started his MRI— that he was undergoing surgery right then.

It lasted about ten minutes.

I mentioned this to Janet, thinking the doctor would be up soon, but he wasn’t.

The fellow next to me began talking to his ex-wife in the next roomette, then moved over there.

Around 10:30, the receptionist came over looking for us. “The doctor called and will be up to see you soon,” she told us.

Then she led us up to the conference room, asking us to wait for him there.

We Hear from the Doctor

It was a comfortable looking room, with a couch, two chairs, and a whiteboard on one wall. A phone hung on one wall.

We sat down.

It was quiet and peaceful in there. You could even close the door.

“We should have had you meditate in here,” I said to Janet.

We sat, waiting nervously.

Dr. Gladstone came in a few minutes later. He smiled warmly, but not happily.

“Well,” he said, “we found about what we expected—it is malignant.”

He looked at us kindly. “If it’s okay with you,” he said, “I’ll call downstairs and get Jefren put into the queue to begin treatment.”

Again, as he had been that first day, he was kind and caring. He smiled often, encouraging us.

He mentioned the name of the hematology doctor, saying he was a good doctor, and they had worked together for twenty years.

“Dr. Walton will take care of the medicine side of Jefren’s treatments— the chemotherapy,” he told us.

Chemotherapy?

Before we agreed to let him call, I had some questions.

“Chemotherapy has a bad reputation,” I said. “There must be some reason everyone says it’s bad.”

If chemotherapy was horrible, did we want that for Jefren? I wasn’t sure.

“Chemotherapy is horrible!” Dr. Gladstone agreed. Then he went on to say that it would probably keep Jefren alive.

I mentioned alternative medicines. Dr. Gladstone encouraged us to look into everything.*

Dr. Gladstone felt that we should get started right away. We said “okay,” for now—once we looked into alternatives, we could always change our mind. He called Dr. Walton right then. Dr. Gladstone gave the details: a young boy with a malignant tumor— osteo genetic sarcoma. Would Dr. Walton stop by Jefren’s recovery room later? Dr. Walton agreed, saying he would. When he did, it was a very mixed blessing.

Dr. Gladstone hung up the phone. Then he told us what he wanted to do orthopedically: perform surgery on Jefren’s leg. He drew a diagram on the white board, showing us where Jefren’s tumor was. It grew halfway through the tibia just below the knee out into the surrounding area. It surrounded a major blood vessel and a major nerve both going to the foot. It grew out into the fibula and up into the growth plate— the part of the bone where your leg grows from as you grow up.

“First, we give the chemotherapy,” he said, encouraging us. “hopefully, that will shrink the tumor. Then we’ll surgically remove it and rebuild the leg.”

When he did do the surgery, he replaced four inches of the tibia, screwed the kneecap back on, and took out the top of the fibula. But that didn’t happen for several months.

Dr. Gladstone explained some of the possible complications which could arise from surgery.

“It’s possible he could loose feeling in his right foot,” he said, “because the nerve may be lost. Or the foot may not get enough blood because a major blood vessel will be lost. Then the cells will die, which will cause problems.”

He told us what those problems were— the foot could get diseased, Jefren could get hurt and not know it, that kind of thing.

“He’s also going to have problems with the tumor going into the growth plate—his legs may not grow evenly.”

He said that after the surgery, Jefren would be in a full leg cast, hip to toe, for about a year.

The Good News

But Dr. Gladstone thought the prognosis for Jefren was excellent.

“Fifteen years ago, it would not be so good,” he said. “Ten years ago, or even five, it would be better but still not great. They’ve made a lot of progress in the past fifteen years,” he said, “and in 1996, his prognosis is excellent—better than 95%.”

“He’s young, he’s otherwise healthy, and I think his chances are excellent.”

Luckily, Dr. Gladstone was right.

Then he left.

Interestingly, with all the news he gave us, Dr. Gladstone never once said “cancer.”

The receptionist let us stay in the conference room. We needed time to adjust. We used the phone to call Janet’s father and my parents. They each offered sympathy and condolences, and said they’d pray for him. We prayed, too.

We still couldn’t go to Jefren— he was still in stage one recovery, so we waited.

Finally, the recovery-room nurses called to let us know we could come down. We left right away.

Recovering from Surgery

We walked in and saw Jefren: pale, drugged, and throwing up, he looked horrible. A tube went from a pouch of clear liquid into his hand, and he complained he was cold even with five blankets.

We didn’t know what to say to him. We wanted to be encouraging, to tell him everything was all right. But it wasn’t.

Still, one thing at a time. We asked Jefren how he was doing.

“Terrible,” he mumbled. His words were slurred, his eyes dull.

He asked what they found.

What could we say? “The tumor was malignant,” we answered. “Don’t worry about that now. Just recover from your surgery.”

There wasn’t much we could do. The nurse did better— when he said he was cold, she pulled a heated blanket out of a warmer and spread it over him.

They told us they’d take him to a hospital room to rest when he was stable. Jefren asked the nurse to take the IV out, but she couldn’t until they were sure everything was all right. Right then, they were giving him liquids and pain-killers through it. He needed liquids to keep him from getting dehydrated, since he kept throwing up.

Around 11:45 they decided he could be moved. A “driver” came to wheel his gurney to a regular hospital room. Jefren complained about the motion, the corners, the bumps, and the elevator— they all made him more nauseous.

He was taken to a room on the orthopedics floor. Already in the room (it was a double) was a boy about his age recovering from a go-cart accident.

In his room

After a little while, Jefren fell asleep. Every so often, he’d wake up to throw up, then go back to sleep. Hours passed, but Jefren did not improve: he was drowsy, he kept throwing up, and he complained his leg—where they operated— hurt.

Regrets

When Janet and Jefren visited the anesthesiologist last week, they told them that Jefren responds very well to medicines, emphasizing how responsive he was to them. Because he was so sensitive, they didn’t need to give him as much. If they gave Jefren the usual amounts, Janet said, it would throw him for a loop.

I guess the anesthesiologist didn’t see that information on the report: Jefren’s recovery, which should have been only an hour or two, took almost eight long hours.

We were very careful with the anesthesiologists after that, making sure we met with them immediately before surgery, in addition to the scheduling appointment. In each meeting, we explained Jefren’s responsiveness and the biopsy disaster in great detail. They all went smoothly after that.

Meanwhile, Jefren was continuing to “recover.” Somehow, Janet and I were maintaining. But all that changed when Dr. Walton arrived.

The Worst Day

Lunch time came and went. The hospital brought food for Jefren, but he couldn’t eat it. He was still either throwing up or sleeping. Janet ate some, but even with the best intentions of the cooks, the food was so processed it was dead: any intelligence* , liveliness, or nutrition had been processed out of it.

I picked out a couple carrots from the soup. At some point I went downstairs to the cafeteria, but it was the same. I found some cottage cheese and a croissant, but that was all.

Finally Dr. Walton came in with several residents.

They were probably trying to be supportive, but it didn’t work. By the time they left, we were staggering.

First of all, Dr. Walton came in and started talking about cancer. “So, your son has cancer,” “the chemotherapy can help reduce the cancer,” “Cancer this,” and “cancer that.” He was probably used to it (after working with it for twenty years). But we weren’t.

He told us our son would live (we never doubted it), but then started describing horrible treatments and side-effects. Then he said something about Jefren having his leg amputated.

Amputated? There was no way Jefren was going to go through all this horror and have his leg removed, too, I vowed.

This was the first we’d heard of it and said so. Dr. Walton said that maybe it wouldn’t happen, he hadn’t seen the reports or talked to Dr. Gladstone, so he didn’t really know.

But he kept on with other bad news, one thing after another. While he spoke, he was leaning over the bedrail, looking at Jefren.

That’s probably why he didn’t see Janet turn white as a sheet and start shaking. I thought she was going to faint or something. I tried to get around the bed to her, but couldn’t get through all the residents crowding around.

I was furious. Why didn’t the doctor shut up and let us adjust for a minute? Couldn’t he see the effect he was having?

No one saw her. If they did, they just went on. Just as I was about to barge through everyone, Janet found a chair and sat down.

But I couldn’t get over how callous the doctor was. Didn’t he have any feelings? Any compassion?

The onslaught continued, bam, bam, bam: Surgery to put in a “central line” in his chest, so they could give him the chemotherapy through it. It was either that or stick an IV in his arm every time.

“Kids don’t like that,” Dr. Walton said. He added the chemo would destroy the veins in the arm if they did do it that way, too. So instead they put a central line directly into one of the major veins— which I guess they figured could handle it better.

More news: the treatment would take a year, Jefren would be in the hospital three out of every five weeks, he’d loose his hair, he’d throw up, he would feel sick and horrible.

The topper: the central line would be put in Monday— one week from today. The chemotherapy would start the next day.

During this whole discussion, Jefren was shivering with cold, drugged, drowsy, and vomiting from the anesthesia. And his leg hurt. Everyone was looking at him, but they were talking to us.

I didn’t think Jefren was getting the attention he needed, the compassion he wanted, and he sure wasn’t getting what the doctor said— he was far too out of it for anything to sink in.

I was in shock. We’d been up since 4:30 that morning, had no breakfast and almost no lunch. It was mid-afternoon, our son lay in pain in front of us, and a man we just met was giving us the most upsetting news of our lives. I was shaking, my head was spinning, and I couldn’t get over how ruthless the doctor seemed.

I told the doctor he was “brutal.”

“What do you mean?” he asked, startled.

“You’re the first one to mention amputation,” I began.

“Well, I haven’t talked to Dr. Gladstone yet. If he hasn’t mentioned it, then it may not be appropriate for this case,” he told me, then apologized.

But then he did say in cases like this, amputation often did occur.

He asked me if there was anything else, and I said the overall way he delivered the news and the way he discussed “cancer” so casually upset me.

He apologized again, then the doctors left.

Thinking about it later

Months later, I realized Dr. Walton didn’t notice Janet because he was focusing on Jefren, leaning over his bed, watching him intently. And after twenty years of dealing with kids with cancer, he’d be more used to the situation. He’d seen the worst, sometimes the successes, and sometimes the failures.

I did come to see great good in him, as you’ll see.

Coping

Janet and I were in shock. We tried to calm each other down. One of us went to find something to eat, but the cafeteria was closed. All we could find were some chips in a vending machine.

Even assuming Jefren healed, there were more worries: how were we going to pay for this? Our insurance would hardly cover anything. (It was great for outpatient testing, but once you were in the hospital, it paid almost zip.)

One of the doctors (I think it was Dr. Sugarman) did show some compassion. Before he left, he volunteered to have someone talk to me from Patient Services about finances. She arrived forty-five minutes later. Janet was meditating, so she and I went into another room where we could talk privately. There was a large aquarium in it, and hundreds of toys. She told me it was the children’s activity room for that floor.

We sat down at a kid-size table.

“Our son has just been diagnosed with cancer,” I told her. “They’re talking about all this treatment and central line and surgery. I’m unemployed, and there’s no way our insurance is going to cover this.”

She was very sympathetic and understanding. She said it would work out, and gave me several options. The last one was to work out a payment schedule with the finance office downstairs. (If it came to that, I knew I’d be making payments the rest of my life.)

The other options were more promising. The first was something from welfare (Title 19). The second sounded better and was called State Papers. (I’ll tell you more about these later.) At the time, all I could get was a vague idea about each one.

“I’m not getting any of this,” I said, apologizing. I asked her to write them down.

“Of course,” she said. She was very sympathetic. “You’re still in shock.” She wrote the list on the back of an envelope. She even put in local (Fairfield) phone numbers for them— a nice extra touch.

She offered her sympathy one more time, and encouraged me.

“You don’t need to be worrying about the finances right now,” she told me. “They’ll work out. Just take care of your son.”

I thanked her, then went back to Janet and Jefren.

One More Try

Janet was still meditating. I figured I’d better, too, and sat down.

While we meditated, the TV was on to keep Jefren company, and people kept coming in to talk to us. Jefren mostly slept, waking up occasionally to throw up (which we had to deal with).

By the time Janet was done, Jefren was mostly awake. He felt horrible, but he wanted to eat. The nurses found some Jell-O somewhere, and he tried that.

It came right back up.

He found some cartoons on TV, and lay back down, staring at the them. (He did that a lot during his treatments.)

The nurses made it clear Jefren couldn’t go home until he could keep down a glass of water. (The IV had come out hours ago.) But whatever he drank, he threw up. Around 5:00, they started talking about him staying in the hospital overnight. We didn’t want that— we had to get back to his brother, Eli. And we didn’t want to leave Jefren.

While that discussion was going on, I saw one of the residents who worked with Dr. Gladstone. He had been in earlier with Dr. Walton, so he knew about Jefren’s case.

I went out to talk with him. I begged him to take back the possibility of amputation. He wouldn’t. I remember thinking that he didn’t have much compassion, telling us without reserve that our son might lose his leg.

Dr. Sugarman came by later and offered his sympathy. He said they really didn’t know about the leg, and that it was possible it would be fine, they’d just have to see.

By 5:30, Jefren hadn’t thrown up for over an hour. He was sitting up (but still groggy). Everyone was optimistic— he would be able to go home.

The nurses brought Jefren a pair of crutches and showed him how to use them. Then there was a flurry of activity: something about medication, release papers and I don’t know what else.

Around 6:00, Rebecca Stanburg, the nurse from oncology (Walton’s department), arrived. She quickly went over the treatment schedule for Jefren, but none of it made sense to me.

Then she went over to Jefren.

“Do you understand any of what’s going on with you?” she asked. She was a large woman with a big heart. Her concern for him showed in her face and voice.

We had been about to leave, so Jefren was sitting (groggily) on the edge of the bed. “No,” he said.

“You have some bad cells in your body,” she said, plainly and clearly. “But we can take care of them.”

She didn’t say it, but what I heard was, “Everything’s going to be all right.”

She went over some papers for us to sign for Jefren’s treatment and scheduled surgery for the central line next Monday. She told us he would stay overnight in the hospital Monday, and Tuesday they would begin his chemotherapy.

Then, at 6:30 p.m., tired, hungry, and emotionally drained, we went home.

* I practice the Transcendental Meditation™ and TM-Sidhi® program for health and well being. For more information, see the More Help section in the back of the book.

* A year later—after Jefren was healed, we learned about Essiac, a tea that cures cancer. For information, see the More Help section in the back of the book.

* The purpose of food is to “feed” your body with Nature’s intelligence, which your body uses to rejuvenate and heal. That’s why less processed food is more nutritional.