Mt. Zion Cancer Center, 1200 York Ave., Hematology/Oncology, Rm. 820
Whitman Memorial, 1220 York Ave., Hematology/Oncology, Rm. 412 (critical)
Two separate bouts of induction chemo. Six consolidations. Plus enough radiation to create a mutant army. These along with two bone marrow transplants — the first allogenic, then, when the cancer returned, a nonallogenic transplant, using a chemo drug approved for use on children, still experimental in adults. In short, every weapon they could think of. Still her leukemia came back, its third and final stay. In the back of the exam room, the doctor, damp in the eyes, continued with his responsibilities, explaining that they’d continue the woman’s regular appointments, keep monitoring her, administering her routine of blood transfusions; she’d come into the urgent care center when necessary, and the hospital would of course admit her if and when needed. If she was strong enough and was willing, they could even try more chemo. But the most that could be expected was temporary easement.
The best thing to say about any day that followed was: she did not feel any worse; at the same time there were no days when she felt an improvement. No days when she felt stronger, or had sustained bursts of energy, when her counts rose of their own accord, when her most cherished foods seemed more appetizing than biting down on a cinder block. She regressed from walking to needing a walker, from needing a walker to taking a wheelchair. The woman could not take care of herself but was too proud to enter a home; she felt that was giving up. But her insurance would not cover a home living aide; so one of her grandchildren took a leave of absence from Columbia’s graduate program in nanophysics and moved into the old Queens brownstone; and since the old woman’s thighs were too weak and the toilet too low, five or six times a day she helped her grandmother — all wrinkles and skin and noodle appendages — squat onto and rise from the bowl. The granddaughter herself was spindly in the manner of a preteen boy, accustomed to huge science books and hours of reading, not even close to in shape to lift anybody, even a shriveled old woman. She certainly had no experience transporting invalid seniors back and forth to the hospital. But she purchased a heavy steel ramp, and convinced the super to let her store the thing in the ground-floor maintenance closet, so on the two days a week when it was time to get Granny out of the apartment for her transfusions (the only things the old woman left the apartment for anymore), the granddaughter could get her up and down the large front steps out in front of the stately prewar building. She ordered an expensive car service for each trip, paid the super to set up the heavy ramp over the front steps. Transferring the old woman out of the chair and into the car was one more slice of fresh hell; the super had been a Russian mob underling before coming to America and refused to get involved unless the granddaughter paid him more; usually the driver stood and watched.
In this joyless manner the two women moved from the beginning of the endgame to wherever this new place happened to be, and were summarily informed that the insurance company had determined that, in this new phase, they no longer needed care from an elite hospital. The granddaughter stayed up late reading policy manuals, she spent untold hours on the phone appealing the transfer of care, dealing with all the attendant paperwork that surrounded her appeals. The granddaughter conscripted very bright friends to do research, make calls, cast the proverbial wide net. She did not want her grandmother transferred to that city hospital. Her friends came up with a drug, not yet approved by the Food and Drug Administration, but undergoing testing at various hospitals in the Northeast. The tests were still in their early stages; some results were encouraging. The woman’s eyes were gummy each morning; her left lid was red and inflamed; she saw things in double and triple, and was weak in a manner that made her previous states of weakness look like workouts by steroid freaks on Venice Beach. The city hospital was a dark and gloomy hull, a broken-down graveyard, especially in comparison to the gleam of new money that sharpened Mt. Zion’s hallways. The city hospital’s waiting rooms were like outclassed cousins whose attempts to keep up made them appear much more quaint and sad.
Her new doctor thought her vision problems might be from leukemia in the brain. He urged a kind of low-grade chemo, immediately, a syringe of it pushed in to linger in her brain fluid. Actually, he said, it’s a lot better than it sounds. She refused: nothing till the tests came back.
Wouldn’t you know, the numbers came back. Turned out she’d been drinking too much water, which had been clearing out her system, causing all kinds of imbalances, which may have played a role in her vision problems. It raised the possibility the woman’s vision problems weren’t caused by brain cancer. It also was eminently possible medicines had caused her muscle weakness and the problems with her gait, which was why she’d been so unsteady. The hospital corrected the problem by giving her different steroids. Instead of water, doctors had her drink Gatorade. She was released in four days.
And this, the woman being right about not getting the chemo injected into her brain, would indeed have been a nice little we-really-did-know-better-than-the-doctors type success story, high-fives all around — that is, if the cancer had indeed subsided after the woman had switched to Gatorade. But we all know, Gatorade does not cure cancer. When the woman got out of the hospital, she still needed her wheelchair and her ramp and her car service. She had to have someone bring her food and aid her up that little step into the bathroom and get her up from off the toilet. In a matter of weeks some other germ got to her and her lungs were filled with so much mucus she was back in the hospital, and in order to breathe, in order to save her life, she needed this thick tube jammed down her throat. Insurance wouldn’t spring for a private room, they put her in with another sickie, apparently everyone would just have to cross their fingers and hope that a thick vinyl curtain would stop any germs. In the side counter of her small basement dry cleaner’s, the woman used to have a boxy television set with shitty reception, lines of fuzz and white noise, the images going wavy whenever the 7 train passed nearby, and still, through the course of her days at work, she watched game shows. Press Your Luck. Wheel of Fortune. She used to rise every day at dawn and walk her two little Yorkies and do tai chi in the small cement park next to the expressway. She’d helped teach the granddaughter how to organize and alphabetize by using the numbers and names on laundry tickets, and that same granddaughter was now taking up very large chunks of her grad-school-insurance-paid-for fifty-minute therapy sessions complaining that she could not take any more of this, her own life shrinking, she was being forced into a cage, but she also had to take more of this, because the only way things looked like they were going to change was in the wrong direction, and she wasn’t prepared to handle that.
Still. Rumbling around in her head, that fledgling idea.
Her older brother flew in from the West Coast after she shared her idea. And once they’d struck out with the Indian woman who followed around their grandmother’s doctor as if she was his pet, they approached the real man in charge, cornering the doctor in the hallway outside the room their grandmother was sharing, and bringing him up to speed about this drug that hadn’t been FDA approved for leukemia, but had been approved for other forms of cancer, and that even now was being tested in other hospitals. They gave the head doctor the experimental drug’s clinical trial prospectus. The granddaughter pleaded for him to take it home over the weekend. Give it a read.
The doctor told her he knew what they were trying to do. It was admirable. But they were talking about a controlled trial being conducted by another hospital. The doctor had never worked with this drug, and the granddaughter wanted him to prescribe it on an outpatient basis, for a disease it was neither intended nor approved for?