May 1, 2010 was Will’s birthday, his 45th. It should have been a new beginning for him. After 22 years of struggle, he’d left the Ray Graham Association. He’d been granted Medicaid waiver funding, hired a personal assistant. He had a plan mapped out – reading and language therapy, cooking lessons, computer lessons. A new beginning was indeed promised – instead, it was the beginning of the end.
The single agent chemotherapy had failed; we’d known that for six weeks. We were waiting for a clinical trial to open up in Chicago. In desperation, I’d located the same trial in New Jersey and had begun preparations for taking him there. It was becoming increasingly clear we could wait no longer. He kept working, part time at a retail store, long past the time most people would have given up. I cannot imagine how he did it. His determination left me astounded, always. On the last night, I picked him up to drive him home. We’d driven a few blocks when he asked me to stop the car. He got out, violently ill. He was never able to return to work. On May 3, we took him back to his oncologist. No more delays were possible.
She examined him, told him he needed to be hospitalized, and then Will and I returned to the waiting room while his two siblings, both fighting serious health issues of their own, and his friend and advocate, Kevin, remained behind to speak to the doctor. They came out looking shaken. I rushed to Kevin. “He’s very ill…,” Kevin began. He held up three fingers. “Three months?” I asked, shocked – even though I should not have been. “No – weeks…” Kevin said, quietly.
Unless the “Hail Mary” treatment worked, there would be no time for any of his plans. And so he began “Biochemotherapy”, a regimen of three chemotherapy drugs and two immunotherapy drugs that, we hoped, would finally arrest the growth of this disease long enough for him to begin a clinical trial with a new drug that promised better odds, offered more hope. Nights of rigors, chills so violent that only morphine shots would ease them, emergency EKGs to monitor racing heartbeats, pleural effusions and capillaries leaking fluid, fevers and rashes and endless pain. And Will never complained, not once. He had fought to get out of Ray Graham, he had won. He was not giving up the promise of a real future, a future of self direction, without the fight of his life. And so he fought, seven times down and eight times up. Again and again.
Ray Graham continued to stonewall his lawyer’s demands for the return of his documents, continued to neglect Mike, his roommate. Will survived the first round of biochemotherapy and returned, along with a team of his friends and family and his personal assistant in support, to his condo – HIS home – surrounded by the people who loved him, whom he’d chosen to care for him – and fought this illness on his terms. None of which would have been possible had he stayed with the Ray Graham Association.