Chapter 22: Protocol

His life had become a series of waves. He learned that the chemotherapy would take him down, then he’d have a blood transfusion to raise him up. His life had become a series of treatments that changed with each new clinic appointment. He never knew what to expect next. He did as he was told and he believed what he’d been told.

X knew that he had a cancerous tumor growing on his leg. He didn’t expect what the doctors had told him next. They said they must do a test to see if the cancer was in his bone marrow. X immediately thought about an elaborate surgery, exploring the inside of his bones to confirm if it was infected or not. The procedure was anything but that.

It had been an outpatient surgery, performed in the clinic itself. It was a relatively simple procedure, but X was told it could be quite painful and physically intimidating. X lay on the table while his nurse practitioner felt his hip joint. She had a long needle in her hand that she told him that she was going to insert between his joint of the hip and leg. This is the easiest place to harvest a sample of bone marrow. You must be very precise with this procedure because it is easy to miss your target. There is a small margin of error. The first time X had this procedure done, he didn’t take any pain medication. It had been somewhat painful during the procedure, but the real pain came afterwards. For two or three days it had felt like a football player had thrown his shoulder into his hip. The harvest procedure lasted about ten minutes. After the procedure, the sample was sent out to see if there was cancer cells in the marrow.

The results came quickly back to X.

His bone marrow was also infected with disease.

A bone marrow transplant was added to his protocol list.

For a bone marrow transplant, they usually ask a brother or sister to be a donor. X’s brother had gone for a blood test to determine whether or not he was a suitable donor. Unfortunately, he was not a match. The next option was to wait for a matching donor. This could take a long time and X had no time to wait. The cancer had been already very extensive in his system. The next option was an extremely experimental procedure called an autologous stem cell transplant.

Prior to radiation, X had a procedure called a plasmaphoerisis. For the transplant to be effective, they needed to harvest large numbers of stem cells. X couldn’t imagine what the procedure would be like, but one day he’d gone into the clinic to begin. Would it hurt, he asked himself? What would it be like? X lay down on a table in a secluded part of the clinic. They’d asked him if he wanted to listen to music or watch a film. X drank an orange juice while waiting. He had not been allowed to drink any caffeine because it could ruin the procedure. The specialist arrived and told him that she was going to insert two large needles into both of his arms. X had been told not to make the slightest movements with his arms once the needles were in place. X hated being stuck with needles, but like always, he tried to put his mind elsewhere during those brief moments of pain. When the tip of the needle was on his arm, he’d blow out a breath of air, relieving a little tension of the insertion. She inserted the first needle into his arm and he couldn’t help but feel the sensation of length going into his vein. She affixed the needle with tape and a bandage covering it. Then she proceeded to the right arm, again placing the needle into his vein.

X lay there in the bed. One needle pumping out the blood from his right arm. The blood travelling behind him through a centrifugal force machine, spinning the blood at high speeds into it’s seven different layers. The smallest and thinnest layer of blood are stem cells which are responsible for creating white blood cells, the cells that create an immune system. The machine separates the stem cell layer from the other parts and puts it into a different area, harvesting it from the rest. The six other layers of blood are then pumped back into the other arm. The machine is basically a fine filter that catches the stem cells. The circle continued pumping out and pumping in. X layed perfectly still on the table with his thumbs tucked under his bottom to ensure he wouldn’t move his arms. He’d felt strange with the needles in his arms. He felt if he’d made the smallest movement, that he’d hurt something. A nurse sat next to X and took his blood pressure at different moments. X had been told that the procedure could last different times for different individuals. For some people, the harvest can last for one four hour day. X’s friend in the hospital was on the table for six days, five hours each day. X had stayed on the table for three days, roughly five hours each day.

Day two had been much better for X. He knew what to expect. He’d watched a couple of movies and tried to relax. Day three, the nurse had difficulty finding good veins because they’d been deflated so much. Eventually, she’d found some and the procedure moved rather quickly. It had turned into a routine procedure by then and he knew how to prepare his mind for it.

The third day finished the harvesting process. The stem cells were then taken and washed in chemotherapy to destroy any cancer cells, then immediately cryogenically frozen for the next step.

The next part of the protocol were the radiation treatments. X handled the radiation quite well and was even able to drive himself to the hospital each day for treatments. X’s dad always offered to take him, but he’d decline. His dad had helped him so much already. While the nurse would set up the equipment for the radiation sessions, X would lay on the table, preparing himself. These sessions were a time of profound concentration for X. He would think about the internal structure of his leg. First the skin, then deeper into the tissues, the muscles, then into the bone. When thinking about the inside of the bone, he’d think smaller yet to the size of cells. He’d see the group of cells moving about, millions upon millions of them. He tried to visualize the bad cancer cells as being red in color, while the good cells were white. The nurses had made a temporary tattoo on his leg to line up the machine overhead. They’d make him as comfortable as possible with many pillows and blankets. Before leaving, they’d ask if he wanted any music played during the session. X usually brought a guitar CD by Leo Kottke to listen to. The door would then close and the session would begin.

Strange mechanical sounds bellowed from the machine overhead, still X tried to concentrate on his leg. X lay motionless on the table. It had been a bizarre feeling because it didn’t feel like anything is happening. It did not hurt. But, he knew that something was taking place in order to cure him.

It was a moment of concentrated cure where science, visualization and prayer combined into a universal healing session.

As the minutes passed, X saw the bad red cells in his leg being blown apart and new pure fresh white cells taking their place. X cleansed his leg in these white cells, washing the interior of his bone with his mind.

The session usually lasted about twenty minutes. After the first session, he’d felt a little tired. The fatigue gradually progressed further and further with each session. By the last session, he’d been really dragging. He’d still driven himself to the hospital each day for three weeks. After these sessions, he’d drive home and take a long restful nap. During these times, he’d also tried to eat everything and anything he could. In the one-month time of his radiation treatments, he’d gained nearly twelve pounds. He’d wanted to be sure to go into his stem cell transplant with a lot of extra weight because he knew he wouldn’t be eating then. During this time, he’d also did light stretching and dumbbell lifting to keep maintain his muscle tone.

After the localized radiation to the leg was completed, it was time to begin the total body irradiation or TBI. Prior to the first session of TBI, he’d received his seventh and final dose of chemotherapy. This had been a double dosage of chemotherapy. The idea is to give the maximum amount of chemotherapy at the end to couple it with the TBI to kill the cancer in one movement. These two actions combined literally kill a person’s immune system. At this point, the stem cells are given back to the person in what is called a Rescue Mission. The stem cells are supposed to return to where they do their job and begin creating white blood cells, therein restarting or recreating the body’s immune system.

X had been really stepping into the unknown with the TBI. He didn’t know what to expect. Would I get sick right away? he’d asked. Would I burn? he questioned. He had a lot of uncertainties in his head and was also trying to prepare himself for the stem cell transplant. Little did he know that he had already been in the transplant program and nearly at the end of his treatments. As it had been, the TBI was the last step of his protocol to kill the cancer. The stem cells were harvested. The double dosage of chemotherapy was complete. The localized radiation was complete. All that remained was TBI.

On the first day, he’d driven to the hospital and checked in. He got undressed and put on his gown. In the waiting area, he gave the nurse the CD he wanted to hear during the session. He then proceeded into the TBI session room.

He was very confused. The room was completely white. The walls and floor reflected a clean white shine. The room was basically empty. Against one wall was an apparatus to sit on and on the side of the room was a large white machine. Nothing obstructed the two items except the shiny floor. Two nurses took X’s crutches and helped him onto the chair. Even at this point, X was not allowed to put any pressure on his left leg. They faced him towards the large machine and asked that he hold the cold metal poles on each side of the chair, exposing his chest. The other nurse asked that he remain perfectly still. X looked down at his chest and noticed a red laser cross hairs on his chest. Opposite of X stood a weapon of great power. X watched on as the two nurses left the room. Behind them, a large automatic door nearly two feet thick closed.

"What exactly are they trying to keep out of the outside world that I am dealing with in here," X asked himself.

A voice came over the intercom, telling him they were going to begin. X prayed and asked God to heal him. Over and over in his mind the words ‘heal me’ resonated. The guitar music began playing softly through the speakers. X felt OK, it hadn’t hurt, but he knew that something was happening. He could feel his energy slowly diminishing, like a battery losing its charge. The first session lasted twenty minutes on his front side. The nurses entered the room again and turned X around so his back was facing the machine.

X had made a joke about this. “Twenty minutes on the front, then flip and twenty on the back until extra crispy!”

Session one was completed in one hour. X had got dressed and hobbled out on his crutches extremely exhausted. It had been an overwhelming and all encompassing fatigue that can only be described as walking death. He’d felt like he was walking through Jell-O-air, thick and heavy. His faced had been red and plump, filled with chemotherapy and radiation. He’d gone immediately home and crashed in his bed. For the next two days he’d done the same sessions.

For the next two days, he’d driven himself to the hospital, a very unwise thing to do. By the end of the third session, he’d been completely wiped out. The point of exhaustion is indescribable. He was not in reality anymore. It was some kind of heavy dream. The doctors had kept asking him if he wanted to check into the hospital, but X denied it each time. He knew he was going to spend an indefinite time in the hospital during the transplant and was determined to stay in the real world as long as possible. He’d been wrong for doing this. He should have stayed in the hospital for the whole protocol because he’d been immune deficient and could’ve caused himself a lot of undesirable problems.

He had to check in the hospital the next day. His dad had taken him as soon as he got home from work. X was in rough shape by then. He can’t say how he looked, but he felt disoriented. He’d checked into his room at the clinic and the doctors said he could go out for one last meal. He couldn’t even think of eating food at this time, yet he and his dad had gone anyway. They’d gone to a family restaurant. Needless to say, the emotion in the air had been very high. There he sat with his dad, his head hanging down to his chest in a gross expression of fatigue. X couldn’t imagine what his father was thinking, seeing his son like that. X looked at the menu. Of course nothing appealed to him, but he’d ordered a bunch of little things off the menu in the event that he could possibly eat. Their food arrived and X had to immediately push it away from him. Just the smell of the food made him sick. In a swaying movement of his head, X looked around at the people in the restaurant. He’d not known how awful he looked until he started seeing the expressions on people’s faces when they looked at him.

They went back to the hospital room and X got into bed. His dad had stayed a little while and then got up to leave.

“We’ll see you tomorrow,” he said.

That night was the first night of his quarantine for the autologous stem cell transplant.