Beyond Angeles

A quick decision

One thing I was sure of: I had to tell doctor to cut back dosage or end Jefren’s chemotherapy.

There was no reason to continue; Jefren no longer had any sign of cancer anywhere, on any level, he had made the commitment to stay on the planet, removing the source of his cancer, and all of Nature was responding by removing any ills he had.

We wanted to make sure everything was all right with this. To do that, we had to talk to Dr. Walton to see what might happen (who would get upset) if we stopped chemotherapy.

After I made the appointment, on Saturday evening, I looked at Dr. Walton, (I was at home in Fairfield at the time) to see how he was doing. (To look like this, just call the image to mind and look.) I noticed a large, reddish form towering above and around him. I could only make out the shape, and it took me a moment to realize it was like the silhouette of a dragon. Just as I realized that (and before I could tell if it was a dragon), Leacafere said he could take care of that whatever-it-was.

“Are you sure?” I asked.

He indicated “Yes,” and told me he’d be gone a week.

I opened the door for him, wished him luck, and watched him fly off over the horizon.

It’s really strange having a dragon no one can see.

Our appoint gets cancelled

The appointment for Dr. Walton was for the following week. Jefren was already scheduled to see Dr. Gladstone at 1:15 on Thursday afternoon, so we scheduled Dr. Walton for 4:30. Jefren was supposed to begin chemo again Friday morning, so he and I went up expecting to stay over at Ronald McDonald House or the Clarion. Lately, the RM House had been filled when Jefren was scheduled for treatments, but they had worked it out with the Clarion so their overflow could stay for $20 a night.

The 1:15 appointment would probably be over by 3:00, so we were going to do some window shopping or check in wherever we were staying while waiting.

Nine-thirty Thursday morning, Betty came by for Jefren’s twice weekly bloodwork. As she drew the blood, she told us a snowstorm was coming. They were predicting several inches.

Jefren and I left about an hour later. It was already snowing, and it looked like we were going to get the predicted inches. But the drive up was fine: for some reason, the snow just blew around our car. We hardly even turned the windshield wipers on. Jefren and I listened to a book on tape, enjoying each other’s company and the ride.

After a leisurely lunch in Iowa City, we drove to the hospital to see Dr. Gladstone. When we got there, we parked in the patient drop-off zone so Jefren wouldn’t have as far to walk. He was still using his walker, and distances took a long time. I went inside with Jefren to help him. When we got downstairs, the receptionist handed us a note from Rebecca, the oncology nurse. Jefren’s blood counts were in and they were too low for him to begin chemotherapy the next day.

There was a phone number to call if I had questions.

I called.

“Well,” she said, “his counts just aren’t high enough for him to start chemo tomorrow.”

I asked if that meant that this treatment would be cancelled or if we would still be at week twenty-three next week. (This was the third week in his five-week cycle, not the fourth which they often had dropped.)

“Still week twenty-three next week,” she said.

I knew Jefren would be delighted he didn’t have to go through chemotherapy tomorrow, but disappointed he was still going to get that treatment. He liked it when the treatments got cancelled.

Rebecca asked me if I still wanted to keep my appointment with Dr. Walton. “I called Janet,” she said, “and she thinks you should just go right home.”

Remembering our last snowstorm experience, I agreed. Rebecca said she’d let Dr. Walton know and tell him I’d call to reschedule.

Dr. Gladstone, that same day

Dr. Gladstone, as was his custom, came to see us in the waiting room, chatting pleasantly and encouraging us. Almost right after that, the nurse took us to an examination room. I went back out right away. The car was parked illegally by the curb, in the patient drop-off zone just outside the door. I didn’t want to get towed or anything.

“Do I have time to move the car?” I asked the nurse.

“It’ll be fine where it is,” she told me. “If you have any problems, I’ll give you a note to give to security.”

That was nice. Thanking her, I went back to Jefren.

Twenty minutes later, Dr. Gladstone came in. It was a short visit —no new x-rays or anything, but Dr. Gladstone thought Jefren’s leg was not getting enough exercise.

“It’s time to start physical therapy,” he told us.

When I asked him how often, he replied, “Every day, if possible.”

He gave us a form for the physical therapist, said good-bye and left.

We left the hospital, stopped for more food, then headed home. During most of the drive, there was light snow that blew off the windshield as we drove along. I was grateful for that, and that we got home early.

But I didn’t get to meet with Dr. Walton till Jefren’s next appointment a few weeks later.

Overnight

When it came time for Jefren’s next chemo treatment, he and I went up a day early. His appointments were still at 7:45 in the morning, so we were going to stay overnight. It was fun.

Jefren loves Chinese food, and we found a Chinese restaurant i a few blocks from the Clarion (the RM House was full). Everyone was sweet to Jefren. When his sesame chicken turned out to be too spicy, the waitress took it back and it brought back some that were perfect for him.

Jefren even took the leftovers with us, to heat in microwave at the hospital during treatment.

When we got to the Clarion, the only room available was down two long corridors. It took Jefren ten minutes and two rests to get there. I moved the car around back so it would be closer in the morning. There were several flights of stairs, but luckily Jefren only had to go down. It still took him five minutes to get to the car.

Seeing the doctor

When we got to the hospital, the nurses started running Jefren through their usual check-in routine: blood test from his central line, a brief examination, weight/height measurements, etc.

While they were doing all that, we were eating. We’d stopped by someplace and gotten some French toast, muffins, eggs, and milk. The nurses thought it was funny. We got the most eating done when we were left alone for several minutes. The rest of the time, nurses kept coming in and going out.

He told me that after treatment was over, he’d see Jefren every two or three months for some routine tests for two years. Assuming everything is fine— and he was “more than 80%, more like 95% sure” Jefren would be, that was it.

That was encouraging. I asked him if he knew what had happened to Jefren after the last first week treatment. He didn’t, but he’d only had a few minutes to look through Jefren’s charts.

I told him that after three days of G-CSF, Jefren’s white blood cell counts had gone down to zero and one. Jefren came in for two units of blood, went home, came down with fever. Came back to hospital, got two more units of blood. Got worse. Got one more unit of hemoglobin. Then his blood pressure dropped so much they were talking of putting him in intensive care.

Dr. Walton accepted all this information calmly, only commenting that intensive care just meant each patient had a full-time nurse taking care of his needs.

“It scared us to think of it,” I said. “But the most crucial thing was that Jefren gave up. That scared me the most.”

Then I asked him about Jefren’s cancer.

“It seems to me,” I said, “that if after ten weeks, his cancer was more than 95% dead, there’s no chance any would be left after even ten more weeks.”

“I’ve had the same thought,” Dr. Walton laughed. “But I haven’t been able to convince my colleagues to test it. Right now, Jefren’s chances are well over 80%— I’d say more like 95% or higher— that he’ll be fine and never troubled by cancer again. But without any research, I can’t recommend he stop treatment.”

“But,” he said, “You can stop at any time— regardless of whatever papers you signed at the beginning.”

He said some teens do stop — the side-effects of the chemo are so bad, “they’d rather die,” he said. “Jefren’s been getting that extremely potent medicine once every three weeks for several months. But he won’t have it anymore—most people going through chemo can’t take any more of that one than he already has, so it’s already scheduled to stop now.”

Which meant Jefren wasn’t going to have the one drug that wiped him out even if he did continue chemotherapy. That was a relief—it took the pressure off needing to stop it right away.

Dr. Walton kept talking. He kept saying he couldn’t tell us to stop treatment, but saying it like that’s exactly what he would like to do. He was very cautious. He said it twice more, each time giving me the feeling that was what he would like to do. He was covering his backside legally, no question about it.

But I wasn’t worried about that— anything that might happen was not his responsibility, it never had been: we’d been calling the shots from day one. He was a resource— a tremendous, knowledgeable, skilled resource we valued. But it had always been up to us. I want to make this clear: I have the highest regard for Dr. Walton. But what happens to us is not the doctor’s fault: everyone is one’s own responsibility.

We went to the best doctors we could find, but we put our faith in God.

Dr. Walton and I chatted for a few more minutes. Then I thanked him for his time, and told him I’d talk to Janet and let him know.

Another decision

I told Janet what Dr. Walton had said. Then we ran it by Amy. Even before she spoke, I knew the answer: I had done the God-Self exercise on this one many times, from many angles. Jefren was cancer free, we knew what caused the cancer— Jefren’s fear— which he took care of when he made a commitment to stay. So why put him through any more discomfort?

Amy felt the same way. Given that, we felt we should stop. But when? There was a risk involved— while we didn’t accept it, there was the possibility Jefren could get cancer again. If he did, statistically, his chances were not the 80-95% and above they were now. Children who get cancer a second time have only a 50-50 chance of survival. If we were wrong, we’d have to live with losing Jefren.

We also didn’t want people thinking we were irresponsible. If someone felt we’d stopped Jefren’s chemo early, they might worry about it (“Was that wise? Shouldn’t you have finished for Jefren’s sake?”). If so, they could create problems the same way many people thinking “Jefren is fine” helped heal him. Thinking creates.

So we compromised. We didn’t think a little more chemo would hurt Jefren— at this point, he was hardly getting sick during treatments. Since they weren’t going to give him the “medicine” that wiped him out and caused him to give up, we felt he would be okay. Janet suggested we go through the next round of treatments, then quit.

“That way, it ends around June. That’s when everyone originally thought he would be done, so no one will be surprised.”

She was right. We told everyone Jefren’s chemo would be over the beginning of June. Everyone was expecting that, and took it in stride. And we cut one whole cycle of treatment out.

We tell Jefren

We told Jefren that he only had a month of treatment left. He was ecstatic. We explained we were cutting out a month’s treatment, but we didn’t think he needed it, so why go through it?

Jefren thought that was great. Instead of looking at two more five-week cycles— plus the last two weeks of the one he was in— he was looking at only a few more treatments. The worst treatment would be eliminated, so he wouldn’t have to spend a week recovering. There was another medicine they gave during week one that he would still get, but the side effects were minimal.

For the past two times, the last week of treatment had been cancelled because his liver was enflamed. So, once he finished the treatment he was on, if his next treatment was cancelled (it was), he was looking at only two, possibly three, more weeks of treatment.

It turned out to be two.

We tell the doctor

Later that day, when Dr. Walton came by, we told him our decision. He nodded, indicating that was fine. I’m sure if he truly thought there was any risk, he would have tried to talk us out of it. He didn’t. He took it as if we had just said, “no more cookies, please.” And that was it.

After that, even the hospital personnel started acting like Jefren was done. Everybody thought it was fine. And it was.

© David Adelson. All rights reserved.