Beyond Angeles

Dealing with finances

When all this started, I was unemployed, in the process of starting an electronic newsletter on editing. I was at the third issue, had a few hundred subscribers, but no money was coming in from it yet. My last paying work had been months before. Janet took care of our family and wrote novels, but at the time had not been published.

The only money we had came from Janet’s father, who was helping us each month.

We had health insurance through an organization we were members of. Luckily, it had a rider which covered outpatient testing and later, physical therapy, very well. Unluckily, the basic hospital coverage was almost nothing— it would cover only a fraction of the in-patient hospital charges. So we started looking for options. Following the social worker’s advice, I called the welfare office to apply for medical coverage for Jefren. I was told any minor could get it. They told me to come in and start the paperwork.

Over the next several weeks, I went through the process: filling out forms, watching a video tape, and meeting our case worker.

When I did meet Jean, the case worker, she was pleasant, efficient, and helpful.

But she and I were “off,” not on the same wavelength. She didn’t think my jokes were funny, and I thought she took things too seriously and by-the-book. So things went wrong.

“First of all,” she told us, “when this does go through, the income limit for a family of four will be $776 a month. That means any income above that will be deducted from the medical bills we pay, and become your responsibility.”

Who came up with that figure? Let’s see him live on that. Under the best of circumstances, we couldn’t stay healthy and live on that. Now, with all the traveling, eating out, and staying over in Iowa City—what to say of the phone bills— that amount was ridiculous.

“What if people pay our bills for us?” I asked her.

“You’d have to report that as income, and anything above $776....” You get the picture.

We applied for Medicaid anyway. At the time, we didn’t know we had any other option.

When I went in, I brought folders of all our financial information, bank statements, everything I could think of she might need. Jean said I did great: I only needed one more piece of information, and it had to be there next Tuesday.

“If you don’t bring it in, this won’t go through,” she said.

“I could run home and get it right now,” I offered.

Jean said that wasn’t necessary. “Just bring it in before the deadline,” she told me.

But I didn’t. For the next several days I was busy in Iowa City. The paper sat on the dining room table all week; I had gotten it out the minute I got home. Tuesday rolled around. All day long, I kept doing the God-Self exercise, then doing whatever I was told. Not once during the whole day did I remember that paper.

Then, at 5:30 p.m.— a half hour after the office closed, I saw it lying on the table. I panicked: there was no way I could get it to the Welfare office forty-five minutes ago. Which meant we wouldn’t get Medicaid. How could we pay for Jefren’s hospital bill? By now—mid-November and only 6 weeks in— it was over seventy thousand dollars. Where were we going to get that kind of money?

I was crushed. I decided not to tell Janet until it was all worked out— she already worried too much about money.* I didn’t know what to do.

I felt betrayed. I had done the God-Self exercise all day and done what I was directed. Why hadn’t God told me to take care of this?

Even while feeling betrayed, it didn’t make sense. God would not set me up like that: She doesn’t play those kinds of games. Somehow, I believed, this was all going to work out.

Thinking that maybe I had to work things out with Jean at the welfare office so it would be smoother, I started directing love to her Tuesday evening. Maybe they would take the form tomorrow. Maybe Jean would call up and say it was all right.

They didn’t, and it wasn’t. When I brought the form the next day, they said it was too late. And instead of calling, Jean mailed an official rejection notice we got Thursday.

Meanwhile, I kept directing love at her all day Wednesday when I could and Thursday morning, especially after getting the notice. Then I called her.

“I thought I’d be hearing from you,” she said.

I asked her what my options were.

“You could appeal it,” she told me.

“How does that work?” I asked.

“You fill out a form, then there’s a hearing. It’d be on the phone: you, me, and a judge in Des Moines. I tell my side of the story, that you missed the deadline. Then you tell your side of the story.”

“I’d say I missed the deadline, too,” I told her. “I’d say I dropped the ball and got the paper in late.”

She laughed. “If you say that,” she said, “they’ll turn you down.”

“But it’s the truth,” I insisted.

“You could just re-apply again,” Jean said. “They’d treat it as a new case and it would go through this time. And they’ll still go back up to two months to cover expenses you’ve already had.”

“I could? Won’t they hold this against me?”

“No, it would just go through,” she insisted. All I had to do was fill out the forms all over again.

All that anxiety, all that freaking out, and all I had to do was re-apply? That afternoon I drove over to the office and picked up new forms.

But I never filled them out.

Help from a friend

All this dealing with finances took place over several months. We started in October, during his first week of treatment. It was December 24th before it all worked out. And when it did, we got exactly what we wanted.

Nicki Armstrong had approached us in October. She was working with the synagogue board and acted as our go-between with them. She called to offer support, and to ask if it was all right if the synagogue raised money for us. With gratitude, we told her it was fine, thank you.

Nicki was also a lawyer, a former assistant district attorney here in Fairfield. When this was going on with Jefren, she was assistant DA in Mt. Pleasant, twenty miles east and where Jefren was born.

She gave us names of people to talk to at the welfare office and at the office of the county nurse, who later helped us a great deal.

We told Nikki what was going on every step of the way. When we had the trouble with Medicaid, she made an appointment to see us.

Was Medicaid best?

The thing is, I wasn't sure Medicaid was best for Jefren. In the past, Medicaid did not always pay for the more expensive treatments or medicines. I didn't know if they still worked that way, but I didn't want to worry that Jefren’s treatment was getting shortchanged because of it.

At one point, Jefren lost so much weight they had to feed him intravenously through his central line, at $250 a day. According to the nutritionist, most insurance companies don't normally pay for that. I wondered if Medicaid would.

State Papers, on the other hand, covered all expenses at UIHC, but nowhere else. Because it was a state hospital funded by the state, the hospital offered a program to residents of the state. State papers would pay all the remaining medical costs after the insurance at the hospital. The advantage was it took care of everything. The disadvantage was it was only at UIHC. No outside prescriptions, no other doctors or hospitals.

But that was okay.

Jefren had gone to the emergency room here in town once, and had been put on a schedule of blood tests there twice a week when he wasn't in Iowa City.

But our insurance covered almost all of that. What it didn't cover, we figured we could find a way to pay. But that was in the hundreds, not thousands.

Support of Nature

Support of Nature is when you have a desire, and everything works out without much doing— what you want happens almost by itself.

Janet and I had been meditating for several years. When all this happened with Jefren, we figured it was better to stay as close to our routine as possible. After all, we needed positivity, our health, and lots of energy to support Jefren. We couldn’t give what we didn’t have.

So we kept meditating twice every day. At the hospital, they had a meditation room, and every afternoon whichever of us was with Jefren would go down and meditate. Not only that, but we did as much as we could to stay on a good, life-supporting routine. After the first few weeks, we started staying at the Ronald McDonald House, a few blocks away from the hospital.

At first Jefren complained: What if I need something during the night?

“That's what the nurses are for,” we told him. “They’ll be happy to help you.”

We assured him he would be all right, and he accepted it. Many nights he asked us to stay with him, often out of habit. Whenever we felt he needed moral support, we did, but most of the time he was fine.

At the Ronald McDonald House, we were able to sleep away from the stressed hospital vibes, so we were more rested and fresh in the morning.

We also started eating better, bringing the food the sisterhood cooked with us to the hospital. We also found several restaurants where we could eat healthy food when we ran out of whatever we brought.

We went for walks outside, to wash out the stress and tension from being in the hospital. If the weather was okay, we walked to and from the Ronald McDonald House, seven minutes away.

All-in-all, we made sure we were taking good care of ourselves, honoring the needs of our bodies, as best we could under the circumstances.

It still wasn’t a vacation. The hospital was still draining, and we were spending ten or more hours a day there. Jefren was still sick, and needed all the energy and love we could give him. Allergies kept me awake at night, and the traveling and home care for Jefren all took its toll.

But we kept our priorities straight. We put God first, honoring our —including Jefren’s— bodies/hearts and minds next, and whatever was left came next.

By doing all these things, we were better able to handle what went on. We were also helped more by Nature.

Chemo continues

After Jefren recovered from his emergency ordeal, he came home. He was home for about a week, then had to go back to 3JC West for the second week of treatment.

Already, after just the first treatment and it’s side-effects, Jefren’s schedule was off. It stayed off during his whole chemotherapy.

Every time Jefren was scheduled for chemo, he had to be at the hospital at 7:45 a.m. so they could do tests on him. That meant leaving our house just past 6:00 a.m. Because it was so early, Jefren would just crawl in the back seat of the car with his comforter and pillows, and sleep the whole way there. He often slept on the way back, too, especially right after his leg surgery.

So he went back. Janet drove since she was going to stay with him first. When they had landed in a room, she called. She told me everything was fine, gave me the phone number there, and said Jefren was going to class in the room they had for school.

His chemo began again that night.

Nothing major happens

Fortunately, this was a different medicine, with less devastating side effects. Jefren was still throwing up at least once an hour, though. And his hair was falling out.

He complained to Janet about the hair, because it fell out all over his pillow. Then, when he was asleep, he’d roll over and get a mouthful of hair, which woke him up and tasted lousy.

But he did have some fun with his hair, too. After Jefren got back from the hospital, he started greeting his friends at our front door by reaching up, grabbing a huge handful of his dark hair, and pulling it out.

“Want some?” he’d say, offering them a handful.

He loved their response. As my father said, “At least he’s having some fun with all this.”

Jefren kept a plastic sandwich bag full of his hair—actually, two. One was for his friend, and the other was for Jefren.

Around the third week of Jefren’s chemo, I felt sick, flu-like, drained and weak in my body. It felt different from the usual flu, more physically tired, and I got the feeling it was “added on,” not coming from me. It began one day with something coming at me from the south and settling inside my body. Immediately I felt drained, and wondered where it had come from and what it was. As soon as I asked, the answer came: it had come from Jefren, because of the agreement/prayer I had made with God— something Jefren couldn’t handle or which would make things much easier for him—had come to me.

This was before we had settled in at Ronald McDonald’s. We were still staying over in the hospital with Jefren, in his room. The hospital was very accommodating, bringing in a cot, letting us use the shower if Jefren didn’t have a roommate. But still, sleeping in the hospital vibes, with all the lights on, with nurses coming in (however quietly) every couple hours, we didn’t get much rest.

That was when Elizabeth Turner called again, to see how everything was going. We told her things were going okay, but that Janet and I were getting exhausted.

“Watch your fatigue levels,” she told us. She had told us before, and said it again.

She told us about staying in the Ronald McDonald House. She had stayed there when Nancy had her surgery. Somehow, that encouraged us.

We had heard about the RM House during Jefren’s central line surgery. The receptionist in the Day of Surgery Lounge actually called them for us so we could get information on it.

But somehow, I had a bad feeling from the call. Nothing anybody said, but just a feeling that we’d be subjected to a lot of uncomfortable energies (for lack of a better word). So we didn’t pursue it.

But when Elizabeth talked so casually about it and because we were getting devastated by 24-hours-a-day in the hospital, we decided to look into it.

Staying Strong

Around the same time, I was talking to Amy on the phone. I had just gotten back from several days staying at the hospital. I was exhausted and knew it. Jefren’s current roommate kept his light and TV on all night, so I didn’t sleep at all.

Amy asked how much time I was spending in Iowa City.

“Two nights in a row,” I told her.

“That’s the most you should be doing,” she said. “Janet can handle that better, so let her do that for now.”

Taking medicine

Even though most of Jefren’s medicines could be given through the central line, there were a few that couldn’t be. There were the G-CSF shots, for one. Another was the anti-nausea drug he was supposed to take for the first few days he was home after each chemo treatment. Lastly, there were his mouth cares.

These were two different liquids Jefren was supposed to swish around in his mouth every day: one twice, the other he was supposed to swallow four times a day. But he didn’t.

The mouth cares were to prevent mouth sores, keep bacteria down, and prevent yeast infections in the mouth, throat, and digestive tract. Without the mouth cares, the body had little defense against these diseases, since the chemotherapy destroyed both antibodies and helpful bacteria.

But Jefren hated the mouth cares. When he did take them, he threw up immediately. Then he’d argue that since he couldn’t keep them down, they weren’t doing any good.

Peter, one of Jefren’s nurses, said that his throat got coated twice by the medicine: once going down and once coming up.

In any event, the doctors and nurses pushed Jefren strongly, trying to get him to take them. Jefren was just as strong, but he didn’t push. He simply didn’t take them.

“If you don’t take them, you’ll get a throat infection that will be excruciatingly painful,” they told him, “and there won’t be anything we can give you— not even morphine helps with that type of infection.”

But Jefren still wouldn’t take them—at least not very often. Most days, he had a little cluster of the ten-ounce medicine cups somewhere in his room. He couldn’t stand the smell, so when the nurses brought them in, he’d move them as far away as possible, then conveniently forget about them.

Jefren was right about the mouth cares— he didn’t need as much as they thought. He did get the first signs of mouth sores once or twice at first. But by the end of treatment, he was comfortably taking about half what they recommended, which worked fine for him.

At the time, though, we were learning to juggle what Jefren felt with what the doctors recommended. On the one hand, Jefren was empathic and very intuitive: he knew what he needed. But on the other hand, Jefren was very cautious about anything that might hurt or make things uncomfortable (like me, he was kind of wimpy that way). The empathy also meant he picked up other people’s feelings, which meant he could feel he wanted (or didn’t want) something (a pizza, for instance) when it had nothing to do with him at all.

Our own intuition was questionable, with the tension in the hospital, the lack of sleep (allergies often kept me up almost every night), and the general stress and strain of the situation.

This was why Amy was so valuable to us. Since she was outside the situation, she could use her abilities to see clearly when we could not. Often— more than eighty percent of the time— she just validated what we already felt.

We also consulted others when needed. Sandy, Elizabeth Turner, Cassie from the chaplain’s office, Gail, Amy (of course), and others all comprised a support group which was essential to our — and Jefren’s — success.

When the doctors said, “take the mouth cares,” and Jefren said, “no way,” we didn’t know what to do.

Since he wouldn’t take them on his own most of the time—although he actually did once or twice. We usually had to stand over him until he took them. I didn’t whole-heartedly agree with the doctors, though. Jefren was responsive to medicines, so he probably didn’t need as much as they thought. Again, it was a “policy” thing. Whenever I was with him, I just tried to get him to take them a couple times a day. I told him I agreed with him, that he probably didn’t need as much as they were giving him, but he did need some.

He thought that made sense and went with it.

Ronald McDonald House

Janet called the Ronald McDonald House and got all the details. She found out where it was, that we needed someone from social services to call them so they’d let us in. She found out it cost $10 the first two nights, then $5 a night after that, that we could have up to four people in the room, that there were two twin beds (that’s been changed to double and a twin, I think) and a private bath. She also found out one of the reasons they could be so inexpensive was they did not have housekeeping staff. Everyone took care of their own rooms and shared cleaning the common areas, like the kitchen, library, and lobby on a rotating basis.

We started staying at the RM House. Everyone there was wonderful, helpful, supportive, caring, friendly. I have nothing but praise for the loving people there.

I wonder why I had a bad feeling that first day when we spoke to them? Was I just tired, or off, and didn’t read the feeling right... or was it more of a thought than a feeling? (Feelings are deeper and closer to God.) I don’t know.

The first day we were there, I walked by one room that threw me across the hall from the tension. But that was the only time. Maybe we didn’t go at first because someone was there we were supposed to avoid. Maybe we didn’t go just so we’d know what it was like in the hospital. Maybe because in the beginning, Jefren did need us to be there with him all the time.

Whatever reason, when we did move from the hospital to there, things smoothed out. We were able to get more rest, actually sleeping most of the night. Eli could come up on weekends, and all three of us could visit Jefren. We got some outdoor time and exercise walking to the hospital in the morning and “home” again at night— we just left our car in the hospital parking lot overnight.

After we stayed one night, Eli decided he didn’t like RM House, mostly because he didn’t like sleeping in the chair that folded into a bed. He ended up trading with Janet and Jefren, if he was there. I couldn’t fit in it, so they left me out.

On weekend mornings, Eli and I would walk to hospital together. Janet usually went earlier, since she was ready first. We had a great time, throwing snowballs, planning a skateboard trip down a large hill, or climbing snowbanks. After each snowstorm, the plows piled all the snow into huge mounts, some way taller than my head. Eli climbed every one.

More Blessings

When Jefren was in the hospital, the Sisterhood and other friends cooked meals for us, usually just dinner. This worked out great, because often I’d be running around attending to things during the day. Gail, a friend from the synagogue, coordinated the meals. Usually, the meals came by way of Sandy, but once Gail (I think she cooked that night) brought it over, still steaming hot.

Gail was a nurse, and I valued her opinion. Since she was being so supportive, I also thought she should clearly know what was going on with Jefren. This was a drastic change for me— usually, we just kept to ourselves. But I felt it was what was needed: everyone who was supporting us in any way should have a clear vision of each step of Jefren’s healing. Gail was also very active in the community and could tell others who needed to know.

When she came to the door with the food, I invited her in. I told her what was going on with Jefren, about his weight, how he was feeling. I told her our schedule, how usually Janet went up to the hospital with Jefren, stayed two days, then come home while I went up. And I told her about possibility of Jefren’s leg being amputated, which I still hadn’t let go of yet.

I was sure Jefren would be fine when this was all over, but I didn’t know about his leg. It seemed wrong to make him go through all the misery of chemo and remove his leg, too. It just didn’t seem right.

But I didn’t know what to do about it. I told Gail what the doctors had said, that we didn’t want it but didn’t know what to do about it.

“We can’t...can we...just tell them we won’t let them do it?” I asked.

“Sure you can,” she answered. “He’s your son. You’re in charge.”

That was encouraging: we were still working out interacting with the doctors: what we would let them do because they were doctors, and what we wouldn’t let them do, because it wasn’t right or necessary for Jefren. That was a major challenge during the whole treatment.

We needed the doctors for their technical knowledge. They also needed our insights to help heal Jefren. I’m just not sure if they realized it.

Another miracle

When we were all settled on that one, Gail looked at me and asked, “How else can the Sisterhood help you?”

“You’ve done so much,” I replied. “I can’t think of anything.”

She looked around our living room, clothes, books, newspapers, mail, and toys everywhere, dishes in the kitchen sink, dirty plates on the dining room table.

“How would Janet feel about getting the house cleaned?” she asked.

“She’d think she was in heaven,” I replied.

The next day, Gail came over with two other wonderful women, told me to go take a nap, and made our home look like a palace.

Adjusting (again)

One of the side effects of chemotherapy is nausea, because the chemo kills massive amounts of stomach cells. Jefren was throwing up a lot— every hour or less, he’d throw up. Not only was he throwing up from the chemo, but he became extremely sensitive to smell. Any strong smell, and he threw up.

Alcohol was a major culprit, made worse by its constant use. They used it to clean his central line. They used it when they drew blood which they did at least once a day. They used it when working on his monitor (the machine that regulated dosages). They used it on who knows what. They used it a lot.

Very soon, all the hospital staff brought in a face cloth or towel for Jefren to cover his nose with whenever they needed to use alcohol or any other strong-smelling stuff. The cleaning people even stopped using disinfectant in the room. Everyone accommodated Jefren.

Amy told us all the doctors and nurses working on Jefren loved him. “Otherwise, why would they be working on him?” she asked.

So they adjusted to him.

All except Dr. Walton. He still came in, suggesting drugs to help Jefren sleep through that whole treatment. But Jefren never wanted to.

Amy told us Jefren had a purpose at the hospital: to teach the doctors that patients are individuals.

“He’s there to break some boundaries for them,” she said.

He did.

Dr. resigns himself:

On the second afternoon of Jefren’s third treatment, Dr. Walton came in the room. He stood there, looking at Jefren, kindly, compassionately, feeling bad because Jefren was uncomfortable, throwing up and just staring at the TV.

Jefren reacted the way he always did when a doctor came in to see him: he ignored him.

During chemotherapy, Jefren just shut down. He would gaze at the TV or Nintendo, cope with his body, and that was it. There was no extra energy or attention for anything or anyone else.

The doctors didn’t seem to mind. As parents, we thought Jefren was being rude and urged him to be polite. After a few months, though, we gave up. We realized it was the best Jefren could do at that time.

When he did feel fine, he was friendly to the doctors, nurses, everybody. He was just seldom felt fine.

To be fair, he shut down all day long. He acted that way to Janet and me, too.

So Dr. Walton just stood there, looking at Jefren. Then he shrugged his shoulders, shaking his head. “We have medicine’s we can give him,” he said, “but Jefren wants to do this his way.” Then he left. He never mentioned the other drugs again.

That’s when we knew he accepted Jefren as an individual.

Food

This was when we also starting eating well. We found good restaurants in Iowa City, with healthy, nourishing meals. We brought the food from the sisterhood to the hospital, where we could keep it in the refrigerator and heat it in the microwave. So whether we were at home or in Iowa City, we were eating healthy foods.

All of us except Jefren, that is. While the rest of us were finally eating well, Jefren was still losing weight. He lost a lot: more than the doctors and staff — especially the nutritionist, were comfortable with.

Even so, we felt everything was going well. We were confident Jefren would get better and we just had to go through this.

Amy agreed. “His commitment to stay on the planet is commendable,” she told us. She also commented on Jefren’s maturity. “He’s much more mature now. It may not show up yet, but it will.”

Seeing how he was handling chemotherapy, we agreed.

* She’s gotten better. Money, as you’ll see, comes where it’s welcomed and appreciated. See God Speaks, Here and Now, mentioned in More Help.

© David Adelson. All rights reserved.