On her 28th birthday Katy Adams felt that her life was finally just beginning. She had recently begun a new job as licensed registered nurse, having spent many a night and weekend putting herself through school, and her divorce from John was finally complete. Katy had married John when she was 19 years old, a relationship that was wrong from the beginning. She was pregnant with her first child when they were married and her twins were born just two years later. The responsibility was more than John, who was a drug user and a gambler, could bear and he drove the family deeply into debt. Katy and the children were often the object of his explosive anger. They separated after 4 years of marriage and miraculously the courts had exonerated Katy from much of John’s debt and awarded her full custody of the children. John was only permitted monthly supervised visits of the children, an opportunity he often failed to follow through on. He was also ordered to pay child support but has failed to follow through on this obligation.
Katy felt a great sense of pride in bringing her life together, which she had done largely on her own. Her mom, who lives with Katy’s sister in Hempstead, NY, had given her a small savings account to help with school and her two best friends had helped watch the children while Katy went to class. Now in her first real job Katy has a decent salary, just enough to keep food on the table, pay for day care, and rent a small upstairs apartment in an elderly couple’s home in Bayport, but not enough to pay for child care which is $500/week. At that the insistence of her girlfriends, she went to the Department of Social Services (DSS) to apply for child care services which was approved.
At first the symptoms were barely noticeable. Katy felt an occasional odd spell of dizziness which she dismissed as probably an inner ear infection. Then there were moments where she noticed an odd taste in her mouth which concerned her but did not seem like the kind of thing she ought to bother the doctor with. That same week she was sitting with her girlfriends when she suddenly “went blank” and could not remember where she was or what she was doing. Her girlfriends forced her to go with them to the ER at Brookhaven Hospital.
At the ER her awareness returned and she felt a little better. Now frightened, she waited patiently to be examined. The ER doctor took a brief history and sent Katy for a MRI scan. The scan revealed the unmistakable shadow of a tumor growing in Katy’s brain. The ER team called in a neuron-surgeon, Dr. Simons, who told Katy what the scan revealed and who told her that he would like to schedule surgery for the very next day. “But I’m a mother!” Katy said. To which the doctor replied, “I know.” So she countered with, “But I have two little kids!” And he said, “You have a brain tumor, but you’re going to have surgery and you’re going to be fine.” “I’m sorry,” Katy replied, “I just need time to think about this and make arrangements for my children!”
Katy left the hospital with her friends. She was uncomfortable with the abruptness of Dr. Simons. She spent a long night scanning internet articles on brain tumor and read accounts of patient stories from hospitals in Manhattan, Philadelphia, and New England. Their websites sounded so hopeful but the centers were far from Long Island and even going there for an evaluation seemed impossibly difficult. She browsed an internet site for the “Best Doctors in NY” and noticed the name of Dr. Davis, a Stony Brook Neurosurgeon. A friend helped her get an appointment and Dr. Davis saw here three days later.
Dr. Davis explained that surgery was the best first course of action for a brain tumor. It was not possible to know for sure what kind of tumor Katy had, that would have to wait until the after the surgery and pathology studies. Dr. Davis explained that if everything went just right she would be out of the hospital in four days and back to work in a month. Katy remembers thinking to herself, “It has to go just right – I cannot be away from my children for more than a few days – it has to go just right.” The surgery did indeed go just right. Katy was out of the hospital in less than a week. Her two friends arrange to care for the children while she was hospitalized and one of them was able to stay with her at home to make sure she was all right.
A week after the operation, except for a frightening looking scar and some weakness in her right hand, Katy is almost back to her old self. Katy tries to return to work but her life is now a virtual maze of doctor appointments, follow up visits – bi-monthly scans – visits to read the scans – and physical therapy for her hand weakness. She is unable to care for the children by herself because of her condition and so she arranges for the day care worker to care for her children in her home while she recovers.
Though Katy is recovering physically at the moment her problems are just beginning. She receives a notice from DSS that since she had stopped working they will no longer make payments to the child care worker from the time she was hospitalized. The bills are piling up and she was denied disability from her job because her primary care physician mistakenly checked the box on her disability form that said she could go back to work in two weeks. LIPA has given her a shut off notice for the end of the month if she does not pay her electric bill.
On one of the follow up visits Dr. Davis explains that her tumor was a grade IV Glioblastoma, a very aggressive malignant tumor which invades normal brain tissue with a network of tendrils extending out from primary tumor masses. Though the primary masses have been excised it is impossible to completely remove the tendrils since they are difficult to visualize and even if they can be identified their removal comes at the cost of inflicting much neurological deficit upon the patient. Dr. Davis recommends a follow up course of chemotherapy and refers Katy to an oncologist, Dr. Goldwin.
Katy meets with Dr. Goldwin. He explains the course of chemotherapy and the side effects that are involved. Of all the side effects they mention Katy is most concerned about the possibility of overwhelming fatigue and wonders if she will be able to continue to work and care for her children. Dr. Goldwin explains that if the fatigue becomes serious there are new drugs which will help to combat the fatigue. “We are a team,” Dr. Goldwin assures her, “we will fight this together.”
After only two weeks of the therapy Katy is overwhelmed by fatigue. Provigil, the drug Dr. Goldwin prescribes for her fatigue, is used successfully to treat patients with sleep related disorders. Provigil is a newer drug and its use to combat fatigue in chemotherapy patients is being investigated by many oncologists. Though there are more traditional anti-fatigue drugs, they all carry the risk of seizure in post-surgical Glioblastoma patients like Katy. However, Katy’s health insurer will not authorize Provigil because they deem it “experimental or investigational”. Katy cannot afford to pay for the medication out of pocket.
Although Katy has not had any additional seizures (she is taking anti-seizure medications), the chemotherapy appears to be ineffective. The weakness in her right hand and arm is getting worse. She is experiencing “weird” headaches that don’t respond to over-the-counter analgesics. A repeat scan reveals that the tumor now has significantly enlarged and now involves much of the left hemisphere. Though none of the doctors have said this, Katy and her family sense that things are getting worse and they are becoming desperate to see improvement. The women turn again to the internet and discover a clinical trial of a promising new chemotherapeutic agent at Johns Hopkins. They call and find out that they will need a referral from one of their present physicians and so call Dr. Goldwin’s office for an appointment. He is on vacation but the office volunteers an appointment with you, a new NP in the practice.
Your role in the practice is to see patients for patient education, symptom management and any other complaints that patients have related to their diagnosis. You meet with Katy and her sister to consider their options. You are surprised to learn that no one has discussed prognosis with Katy and the patient. They press for referral to Hopkins, so that she might be admitted to the clinical trial. You know that her insurance company will deny coverage for this, but that you might be able to get her into the trial with a “scholarship” from the research grant if you make a good enough case to the right people at Hopkins Cancer Center.