The Tumor: A Non-Legal Thriller (3 page)

By Tuesday morning, the weakness has improved slightly. Paul is able to lift his arm but movements of his fingers are slow and his grip is weak. He is able to stand but can walk only with assistance. Karen stays by his side as the hours drag on. He wants to discuss what’s on his mind: death, life insurance, his last will and testament, their savings, her future, the kids’ futures. Karen, though, is simply not ready for this. She doggedly maintains a veneer of optimism. To Paul, it seems more like denial. She tells him that a lot of friends are eager to stop by for a visit, but he says no. He looks awful, feels worse, and wants to see no one, not even his own children.

Early Wednesday morning, one week after his seizure, they meet again with the neurosurgeon. The pathology report confirms their worst fears: glioblastoma, grade four. Although the tumor has been removed, it left behind microscopic portions that extend into the normal brain and cannot be surgically removed. These remnants of the tumor will almost certainly regrow, and must be treated with radiation and chemotherapy. When the tumor returns, there will be the likelihood of more surgery.

With as much professional sympathy as possible, the doctor tells them that, according to statistics, Paul can expect to live 12 to 14 months. Occasionally a patient will live 5 to 10 years, but that’s uncommon. He offers his usual, “Hope for a miracle, but plan for the average.”

“Plan for the average,” Paul repeats after the doctor leaves. Karen pulls the shades and turns off the lights. They sit in the darkness, holding hands, as the monitors beep occasionally. When they speak, they discuss the best way to tell the children.

Thursday morning, the radiation oncologist stops by. He describes radiation therapy and explains that it will be administered five days a week for the next six weeks. Among other side effects, Paul will lose his hair and his face will swell and become disfigured from the steroids he’ll be given. Later, the neuro-oncologist stops by and they discuss chemotherapy, which has its own set of unpleasant side effects.

On Friday, Karen brings their children to the hospital to visit. She and Paul have decided to wait a few months before delivering the bad news. They still believe in miracles and are praying a lot. After the kids leave, Paul’s parents visit him. With Karen home with the children, he does not pull punches. He’ll be lucky if he’s still living a year from now.

Later, alone and in a dark room, Paul opens his laptop and pulls up a calendar for the next 12 months. It’s all there, all planned: the school year, their upcoming vacation, the holidays and birthdays, a golfing trip with his friends, several business trips, his parents’ 40th anniversary. Would he be able to enjoy any of it? Would he even be alive? “Plan for the average” means he should be able to make it to Christmas. What does a father of three young children do to celebrate his last Christmas?

Paul thinks about the next 12 months and asks himself many questions. There are no answers.

Later that afternoon, he is transferred to a rehabilitation facility to address the weakness in his left side. He cannot raise his left hand to his face, nor can he walk without a cane. Ten days after surgery, he is discharged and taken home. He is instructed to return to the rehab facility three times per week. His left side continues to improve.

Being at home lifts his spirits. Friends arrange meals and there is a steady flow of traffic to the house. He tries to eat but his appetite is gone. Two weeks after surgery, Karen drives him to the office where he’s greeted like a hero. He is determined to work at least half a day until he regains his strength, and he assures his colleagues he’ll be back. Paul begins radiation therapy Monday through Friday, five days per week.

His hair falls out rapidly from the radiation and, worse, his face begins to swell from the steroids (opposite). The moon face seems to grow each day. He looks terrible. He is constantly fatigued, and his thinking becomes slow and dull from the damage to his brain caused by the radiation.

He gives up on the idea of going to the office. His boss promises to cover for him and keep the paychecks coming. The group medical policy covers 80 percent of the expenses.

His lawyer drafts a new will, not that one is really needed. Paul and Karen own everything jointly; upon his death, it’s all hers anyway. She certainly gets the kids. His life insurance policy is for only $250,000. They have about $40,000 in savings. With three children under the age of eight, the future is anything but secure. Karen secretly begins checking out employment opportunities on the internet. Their minister stops by every other day for a devotion and prayer.

Chapter 4

The End

Six months later, the weakness in Paul’s left side increases dramatically. He cannot grasp objects with his left hand. He drags his left foot when walking and cannot move around without assistance. He notices he cannot concentrate for more than a few seconds. His short-term memory is shot. An MR scan shows the tumor is back and growing rapidly (below).

MR showing recurrent tumor

It also reveals damage in his brain compatible with the effects of radiation. His neurosurgeon offers the option of another surgery to remove the recurrent tumor.

Paul and Karen discuss this for several days. A second operation is more likely to damage the brain. There is no certainty that the tumor will not recur again, and again. They are losing hope, and their thoughts of miracles are fading rapidly. Paul could almost throw in the towel, opt for a few final weeks with pain medication, and suffer as little as possible to the end. Karen, though, still believes in luck.

The second operation is similar to the first. The visible portions of the tumor are removed, and Paul’s skull is put back together. When he awakens, though, the weakness in his left side is much worse. He is transferred to a rehabilitation center. After three weeks of intense therapy, his condition does not improve. He can no longer stand without assistance, nor walk without a walker. His left hand is essentially useless. He is discharged home, where he arrives in a wheelchair. The chemotherapy has been ineffective and is terminated. Paul takes steroids in an effort to reduce swelling in his brain.

At this point, Paul begins saying goodbye to his family and friends. He bravely accepts the fact that his days are numbered, and he wishes to say farewell on his terms. As bad as he looks, he knows that things will only get worse.

In a heart-wrenching scene, he and Karen finally tell the children that their father is about to leave them.

The steroids are not working and are cut off. He’s left with only some powerful narcotics to deaden the horrible headaches, which occur with increasing severity.

Paul prays for a quick and painless end, but this doesn’t happen. He slowly deteriorates and becomes increasingly confused and disoriented. He loses almost all consciousness and his ability to move. He is bedridden and requires around-the-clock care for feeding and bathing. Karen sleepwalks through the days and nights, thoroughly drained, but trying gamely to shield his condition from the children as much as possible. Eight months after his seizure, Paul has completely checked out, but his heart still manages to beat. Karen finally begins praying for a merciful end.

Nine months after the first surgery, he passes away, at the age of 36.

The total cost of his treatment and care is
approximately $300,000.

Chapter 5

The Alternative

Paul was born in 1980, ten years too early. Had he been born in 1990 and diagnosed with a brain tumor at the age of 35, in 2025, his story could be rewritten as follows:

That same Wednesday morning, Karen hears a crash in the bathroom, and she finds Paul on the floor in a grand mal seizure. He’s taken to the ER and admitted to the hospital. An MR scan is performed with molecular imaging, a more advanced scan than was available ten years earlier.

Based on the scan, the neurosurgeon, with virtual certainty, makes a diagnosis of a glioblastoma and explains the prognosis and the treatment options, including focused ultrasound therapy. The size and location of Paul’s tumor make it amenable to treatment with focused ultrasound therapy, which is what the neurosurgeon recommends. He explains that the tumor in all probability cannot be cured and will return, but it can be controlled with repeated treatment, giving Paul more years with a high quality of life.

The focused ultrasound brain transducer fits over the head and emits beams of energy that penetrate the skull to target a tumor.

Early Friday morning, Paul and Karen walk into the focused ultrasound therapy suite (
fig. 1
). He changes into a gown, takes a light sedative, and is positioned on his back on a table.

His head is securely fixed in a hemispheric focused ultrasound brain transducer (
fig. 2
). The transducer is capable of transmitting more than 1,000 intersecting beams of ultrasound energy through the scalp and skull to the tumor with a high degree of accuracy and without damaging the adjacent normal tissue. After the transducer is in place, Paul is inserted into the bore of the MR machine.

In the adjacent control room, the surgeon manually outlines the tumor, which is to be destroyed by the focused ultrasound beams (
fig. 4
). Paul is awake and feels no discomfort. Karen stays by his side, holding his hand and chatting with him. The treatment begins. The surgeon is in constant voice contact with Paul and Karen (
fig. 3
). He uses continuous images from the MR scan to guide the precise point where the ultrasound is focused and to control the delivery of its energy to the target (
fig. 5
).

It takes about an hour to kill all of the tumor that can be seen on the MR. At the completion of the procedure, another MR scan is performed to confirm the entire tumor was treated.

While this is happening, powerful chemotherapy agents enclosed in microscopic nanoparticles are injected intravenously. These circulate with the blood in every tissue and organ in the body, but the chemotherapy drugs are inactive because they are trapped inside the nanoparticles. After eliminating all of the tumor that can be seen on the MR, the surgeon then refocuses the ultrasound to the surrounding brain to activate the nanoparticles, which release their pharmacological payload in the precise area around the tumor where residual microscopic extensions of the tumor have infiltrated. This allows very high concentrations of the drugs to be delivered focally to the brain while minimizing systemic side effects. The remainder of the chemo-laden nanoparticles will be excreted.

Less than two hours after the treatment began, Paul gets off the table and walks to the recovery room for observation. There are no complications, and he is discharged home Friday afternoon. He feels fine. The only aftershock is some residual clumsiness in his left hand from his initial seizure, which is decreasing. On Saturday afternoon, he and Karen and the kids walk down the street for a block party. They have yet to tell their families and friends about the tumor and the treatment. On Sunday, the entire family goes to church.

On Monday, Paul is at the office before 8 a.m., eager to catch up after three days off. He explains to his colleagues that he was in the hospital for “tests,” but everything is fine. He looks and feels like himself. The weakness in his left side continues to fade away.

A month after the ultrasound procedure, he undergoes another MR scan. The scan reveals that the ablated tissue is being absorbed harmlessly by Paul’s body. The mass is not regrowing due to the efficacy of the focused chemotherapy treatment that targeted the microscopic extensions of the malignant tumor. The deadened tissue continues to shrink.

Three years later, Paul again notices difficulty using his left hand. His left foot occasionally drags. He does not hesitate and calls his doctor immediately. An MR scan is done and reveals that the tumor is back. The following day, as an outpatient, he undergoes another focused ultrasound procedure. The weakness goes away after a month. Four years later, seven years after his initial diagnosis, the tumor is growing again, and the procedure is done for the third time.

Cost to date: approximately $75,000
Savings: about $225,000 and one life prolonged