Beyond Angeles

Results

After removing the tumor, the doctors analyzed it to see how effective the chemo had been. This process took several days. In the middle of the week, the doctors called with the results: more than 95% of the cancer cells were dead (a terrific response) and the surgery got 100% of the tumor out.

YEAH!!!

Jefren begins physical therapy

As soon as they could after surgery, they started moving Jefren around. First they transferred him to a special wheelchair, like a couch on wheels. Jefren could lay back and keep his leg supported straight in front of him.

They wanted him to get used to moving with the cast to keep his body strong. As soon as he was able, they sent him down to physical therapy. There they taught him how to get in and out of bed, a chair, and how to go up and down stairs. He would need to do all these things at home.

And they showed him how to use a walker.

Jefren liked the physical therapist, who was understanding and didn’t push Jefren too hard. He also liked their walkers, which had yellow and black tape on them. When Jefren got his own walker to use at home, he asked his therapist to put some of the striped tape on it. The therapist spend almost ten minutes decorating Jefren’s walker for him.

Watching Jefren waddle with his walker was interesting. Elizabeth Turner had told us months before and again in December, “I don’t even see him having a limp once this is all done.” Other people had suggested something similar. My own intuition said he would be done with everything— limp included— by next December. Seeing him struggle to move around, I felt sorry for him, but knew it would be all right in the end.

1st several weeks, Jefren recovers

Five days after the surgery, Jefren came home. He was recovering nicely, which meant he wasn’t doing anything but recovering. He got caught up on some of his schoolwork, but other than that, those days were pretty quiet.

Until we went back so he could get a new cast.

The first cast— the one they put on right after surgery— was padded with several inches of cotton to cushion his leg and allow for swelling. But after two weeks, the swelling had gone down, and now the doctor wanted to look at his leg and put on a different cast. They’d looked at it once, several days after the surgery. That time, they just cut it open to peer inside, then re-wrapped the whole cast.

Unfortunately, Jefren wasn’t having a good day that day. He was not happy to see the doctor, or to go to the cast room where they would take off his cast. He was nervous about having it taken off, worried his leg would get hurt when there was nothing to protect it. That was how he started out: nervous and afraid. Things went downhill from there.

Jefren asked (begged) them not to take off his cast. The nurse who did was wonderful, soothing Jefren, explaining everything to him. She comforted and sympathized, and eventually, with Jefren’s begrudging consent, cut his cast along both sides. Then she took off the top half. Inside, you could see Jefren’s leg.

You could also see, spanning the length of his scar, more than forty staples. Jefren had thought there were stitches. Unfortunately, he looked down and saw his leg.

It was not a pretty sight. His leg looked shriveled and bruised, with dried, dark scabs splotched along the incision. The cut went from mid-thigh to mid-calf, about eighteen inches, and every eighth of an inch, there was a staple.

Jefren freaked. He was already losing it, just from having his leg exposed. Probably it was an “out of the womb” type of thing. Added on top of that was the shock of finding the staples. It probably wouldn’t have been as bad if they had just warned us. We were all expecting stitches.

We asked Dr. Gladstone about it. He explained stitches wouldn’t hold that kind of incision— the muscles needed to be held together strongly, and stitches just wouldn’t do it.

That made sense. It just would have been nice to have prepared emotionally.

Things got worse: the staples had to come out that day, right then. Emotionally, Jefren was already reaching his limit. When he found that out he just lost it.

I felt so sorry for him. So much was being done to him. So many changes.

He handled all the big stuff — the surgeries, the chemotherapy, the shots, without a whimper. But some of the smaller stuff he had trouble with.

Somehow, between his begging and sobbing, the nurse and I soothed him enough to get out six or seven of the staples. We told Jefren it was five. Then we gave him a break. After a few minutes, she told him she needed to take five more, then he could have another break. She took out six or seven again, then he got a rest. It wasn’t ideal, but eventually, with a lot of hand-holding, sympathy, and soothing, she finally got all the staples out.

As soon as she was done, she put a new cast on. Jefren picked out the colors, denim blue and light blue, and she wrapped them around his leg.

The second the cast was on, Jefren settled down.

“It just felt bad when the cast was off,” he explained.

The rest of the day, we all recovered from the ordeal.

Jefren takes an outing

A couple days later, Jefren asked us to take him to school for lunch. He wanted to show off his cast, and let his friends sign it. The teacher who worked with him at home checked with the school. It was all right with them, so we said okay.

We dropped Jefren off, settled him in the cafeteria, and left him under the care of several teachers and councilors. When we picked him up an hour later, he was tired, but in great spirits.

Many friends signed their names on his cast. Some even put their phone numbers. Jefren was delighted. When that cast came off six weeks later, Jefren took it home and put it on display in his room.

Chemo continues

When we saw Dr. Gladstone the day the staples came out, Jefren had not had any chemotherapy for five weeks. Rebecca (the oncology nurse) asked us to ask Dr. Gladstone when they could start the chemo again.

“Anytime now would be fine.” he said. “The nurses were thinking about January 28th,” I said, “but since his birthday is February 1st, we want to tell them Feb. 2nd, if that’s okay with you.”

He nodded. “That’ll be fine,” he said. He indicated the 28th would have been fine, too, but agreed to have them wait until after Jefren’s birthday. When they scheduled it, though, it turned out to start February 3rd.

Before we went back, we talked to Amy.

“Why can’t we just stop the chemo now?” I asked.

She told us he needed ten more weeks of chemo, then he could stop.

“That’s all he’ll need,” she told us.

“How do we get the doctors to see that?” I asked.

“Ask them about it,” she responded. “There must be something they can look at which will show that’s all he’ll need.”

“You could ask them to stop it now,” she went on, “but everyone asks to stop right after surgery. They may not be receptive to your stopping now.”

“Just ask (using the God-Self exercise), ‘Do I say this now, or do I wait?’ Then go by the answer.”

So, when February 3rd rolled around, and Jefren went back to the hospital, I asked. “Wait,” was the answer I got, so we did.

Back in the hospital

Jefren was feeling great. His leg was in a cast, and he was still working with that, but he hadn’t had chemo in about seven weeks by then. He’d been eating well, his weight was back up, and he was smiling and talkative. Even his hair was growing back.

“This doesn’t look like the kid I know,” one doctor smiled at him when she stopped by. “The kid I know is all quiet and dragged out in bed. It’s good to see you feeling so well.”

Other doctors and nurses made similar comments.

Within a few days, though, he was back under the medicine. Even so, he wasn’t throwing up as much, and actually talked to the doctors when they stopped by.

Done adjusting

By now, we had the hospital routine under control: we knew when to go, what to bring, where to eat, how to keep Jefren as comfortable as possible, and how long Janet or I could stay with him before we needed to switch.

In fact, everything was easier for us now. It had taken about three months for us to get used to the whole thing. From then on, everything was pretty smooth.

That didn’t mean we didn’t have more challenges. They were just fewer and further apart.

When I asked Jefren how he felt about the whole thing, he said “It makes me angry. It’s annoying that I have to go to Iowa City to the hospital, and get sick and throw up.”

That was the most he ever complained about having cancer. He complained about certain aspects of his treatment—mostly the mouth cares, or taking pills (crushed up)— but mostly just little things.

Once, a student nurse gave Jefren a shot (her first with a living person) that lasted several minutes. That’s a long time for a shot, and after she left, Jefren started crying.

Some good came out of it. After months of Jefren telling the nurses how to do things, including his shots, Jefren stopped. He asked the next nurse to do it differently, then gave up altogether— he just let each nurse do what they wanted.

The only other time he cried was when they asked to cut off his leg and when he had his staples removed.

Jefren’s leg heals

After about a month, it was time to change casts again. It had been six weeks since Jefren’s surgery.

Every so often, I would look at Jefren’s leg through his cast. It was interesting. For all of that time, up until the last week, all I could see was bright golden light— nothing else. There was no form, no boundaries, only energy everywhere.

Then, during the last week before Jefren’s appointment, I saw some muscles forming at the top of his thigh. Over the next three days, I watched as more and more muscle, bone, tissue appeared and took form. On the day of his appointment, his leg was whole.

We amaze the doctor

Jefren was already in the hospital getting chemotherapy when his next appointment with Dr. Gladstone came up. When his office called, saying the doctor was ready, Jefren climbed in a wheelchair and I pushed him to their lower level office.

When we got there, they told us the doctor wanted to look at Jefren’s leg and put him in a new cast. We’d been warned this time (and there were no staples), so we were prepared. They led us to the cast room, sat Jefren on a bed, and began to saw off his cast.

Fortunately, this was a good day for Jefren. He was chatting with the nurse, picking out colors for his next cast, taking everything in stride.

They used this vibrating disk to cut through the cast the nurse explained when Jefren asked why it didn’t saw through people’s skin. Once his cast was off we waited for the doctor.

Dr. Gladstone came into the cast room from behind the bed Jefren was on. As he walked toward Jefren, his face lit up.

“That looks fantastic,” he told us from about ten feet away.

He came up and stood at the foot of Jefren’s bed, staring at the leg.

“That looks fantastic,” he said again.

We chatted for a moment, he asked Jefren how he was, then took me aside to look at the x-rays.

As soon as we were away from Jefren, Dr. Gladstone looked at me, tilted his head over his shoulder, and told me in complete amazement,

“That looks fantastic.”

Jefren gets a new cast

Dr. Gladstone was really impressed. I was delighted: it proved that everything we had done— gandharva, prayers (ours and other’s), the God-Self exercises, confidence that everything would work out, yagyas, everything, worked.

The doctor wanted to put a different cast on Jefren, this time a hinged one. “There’s no question you’ll be able to bend your knee when all this is through,” he told Jefren, “But we want to make sure you can straighten it out, too.”

A specialist came in to do the hinged cast. It hurt Jefren getting it on— his leg hadn’t been that straight since before the surgery. He hadn’t even been able to bend it for the last six weeks. Jefren cringed, fussed, and gritted his teeth. He asked for some pain medication, but the doctor didn’t recommend it: once the muscles stretched out, it wouldn’t bother Jefren anymore. He said it would take about a day. It did, then it was okay.

As the doctor was leaving , he said again how good Jefren’s leg looked.

“Well, you helped,” I said to him.

He stopped, looked up towards heaven and said, “Well, Somebody did.”

I agreed. Then he left.

A change in routine

Even with the new cast, (it lasted three weeks), Jefren still wasn’t getting around much.

Since fall, when chemotherapy began, Jefren had an on-going order to have his blood drawn through the central line twice a week whenever he was home. Up till now, we’d been having it done at Jefferson County Hospital about ten minutes away.

First thing every Monday and Thursday morning, we would take Jefren to the emergency room for them to draw blood. Now, with the cast and walker and snow all over the ground, it was harder for Jefren to get there.

So we called the county nurse. We had to fill out some forms, but then Betty started coming out to the house every Monday and Thursday morning. (One morning I didn’t know she was there and walked into the kitchen in my boxers. Oops.) She would take the blood, then drive it to the hospital. They processed it there, then faxed the results to Gwen or Rebecca in Iowa City. Later in the day, one of them would call us with the results, telling us any medical changes we needed to make. Usually, start or stop G-CSF shots. Occasionally it was to take a potassium prescription.

The county nurse worked out great. Usually, it was Betty, but not always. Not only did they come to take blood, but they could also give the G-CSF shots, relieving Sandy, and do his central line care. That was great— it gave Janet a break when she needed it. We didn’t have them do it often— Jefren still liked his mom to do it, even at the hospital. But every so often, she appreciated the help.

© David Adelson. All rights reserved.