‘Perhaps a year, maybe a little more’

‘Perhaps a year, maybe a little more’ July 20, 2017

“You gotta believe!” everyone said, because it was Tug McGraw so of course we did.

Around here, everybody loved Tug McGraw. We all remembered his signature rallying cry, and how he had overcome the odds before with the ’73 Mets and the 1980 Phillies. This was the guy, after all, whose never-say-die attitude prompted his manager to utter the famous maxim “It ain’t over ’til it’s over.”

But it was over. I realized that when I first heard the diagnosis for the beloved former athlete and understood that even his indomitable positive spirit couldn’t help any more than all those “Tedstrong” bracelets would a few years later. I’d seen this before.

Glioblastoma multiforme killed my grandmother. And then, years later, it killed my mother.

That’s what this disease does. It kills people. It is, as we keep hearing today in the news, a very “aggressive” form of brain cancer. There is no cure, no potential for long-term survival. Doctors can beat back against the relentless march of those aggressive tumors, but their spread cannot be stopped. Glioblastoma is a death sentence. It is a matter of months. Perhaps a year, but not two.

The disease that claimed my grandmother and my mother is also the disease that killed George Gershwin.* And Gene Siskel. And Tugger and Ted Kennedy. And now it has struck one of Kennedy’s long-time colleagues, Sen. John McCain.

As a senator, a veteran, a senior citizen, and a wealthy person, McCain is assured the very best medical treatment available in America. I hope he finds a team as skilled and caring and resourceful as Dr. Fadul and his many wonderful colleagues at Dartmouth Hitchcock. Those were the people who treated my mother in the last year of her life, ensuring that it was the best year it could possibly be. I have seen what lies ahead for Sen. McCain, and I have experienced what lies ahead for his family, so they are all in my thoughts and prayers now.

Ironically, it may be unwise for me to be saying all of this, due in part to Sen. McCain. If he and his fellow Republicans in Congress have their way, health insurers could soon be allowed to deny me coverage — or to double or triple the cost of my insurance — due to the fact that I lost two close blood relatives to the same disease. As far as we know, this cancer doesn’t have a genetic component, and there’s no medical reason to believe my risk of developing it is any higher than anyone else’s. But if the repeal plans favored by McCain and his colleagues become law, then insurers wouldn’t need a medical reason, or any reason at all. They’d be permitted and encouraged to deny coverage — and therefore to deny care — to anyone they chose.

If those plans become law, tens of millions of Americans will be cut off from access to affordable health insurance — cut off from the same care that Sen. McCain himself is now receiving, the same care he now relies on as every one of us one day will.

My mother wasn’t afraid to learn that her disease was terminal and incurable. But she was deeply worried about the unpredictable symptoms that could accompany that disease. My grandmother had come to live with us when the cancer struck her, and Mom had cared for her as she struggled with great pain and confusion. My mother wasn’t afraid that she might face that same pain, but she dreaded the possibility of getting lost in that confusion or of suffering the kind of radical change in personality that can sometimes accompany the disease.

Mom was spared that. She encountered a host of strange and varied symptoms as the tumors spreading throughout her brain pressed against different parts of it. Her speech was sometimes affected, and her once-perfect handwriting deteriorated badly, but she was always lucid and always herself — keeping her wits and her wit throughout the long struggle.

She was professionally fascinated by some of her symptoms. After 30 years as a second-grade teacher, my mother had gone back to school to become a learning-disability therapist. She left the classroom and founded a tutoring center where, for the final decade of her teaching career, she tutored students with learning disabilities one-on-one, helping them find strategies and approaches that worked best for them. She said that expertise and experience was what enabled her to keep reading as the progression of the cancer made that increasingly difficult for her. She also said she wished she’d had that firsthand experience — albeit not the disease itself — back when she was still tutoring. She thought it would have made her a better teacher.

At one point, for a few weeks when the tumors were constricting some new part of her brain, Mom was suddenly unable to say any word that began with the letter H. It was frustrating, but she made a kind of game out of it — either playfully rephrasing everything to avoid H-words, or just giving a look that we soon learned meant we had to fill in the blanks for her. “If we … if company comes,” she said, “I can’t introduce them to your father.”  She couldn’t say either “husband” or my Dad’s first name.

Mom found that funny. And it was, despite everything. She’d misplace the hat she wore to keep her surgery-scarred, shaved head warm. “I’ve lost my …” waiting for us to finish the sentence. “Hammerhead shark? Hottentot? Hamburger Helper? … Here it is, under the wheelchair.”

That weird H-word symptom didn’t prevent her from reciting her mantra, from Nahum 1:7, “The Lord is good, a stronghold in the day of trouble.” Or from repeating the call-and-response variation of that she’d learned from church ladies in another tradition. “God is good.” “All the time.”

Shortly after Mom was first diagnosed, my sister learned that she was pregnant. That set the timetable. “Perhaps a year, maybe a little bit more,” the doctors had said, and she said that would be enough. She lived to see the birth of my nephew, Toby. The name Tobias means “God is good,” the same phrase now carved on the marker at my mother’s gravesite on a Vermont hillside.

Does any of that make for a happy ending? It was an ending. An ending is, always and for everyone, unavoidable. And confronting the fact of her ending did not, for my mother, change the fact of her happiness.

That same awful disease now means an ending is arriving for Sen. McCain as well. I wish him and his family all the best that is possible in the days and months to come.

McCain approaches that ending with more power and influence than someone like my mother or my grandmother ever had. I hope that he will realize that in the perhaps a year, maybe a little bit more, that remains, and that he will choose to use his power on behalf of the millions of others who will never enjoy all the benefits and extraordinary privileges he has enjoyed as an influential senator. If he does that, I think, he will find his way to a happy ending and an enduring legacy.

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