A famed author and activist thought her life was over — but a name from her past turned out to be the one who could calm her fears about the future
Letty Cottin Pogrebin is something of a workhorse. The longtime activist and prolific author has among her many credits 12 books, several decades’ worth of articles and interviews, and a lengthy list of speaking engagements. She was one of the founders of Ms. Magazine in 1972 and one of the editors of the groundbreaking Free to Be You and Me in 1974; she is most recently the author of Shanda: A memoir of shame and secrecy. She is a mother and grandmother, a breast cancer survivor, and a dedicated advocate for Israeli-Palestinian peace. A few years ago she put on yet another hat when she became a patient of the Weill Cornell Medicine Brain and Spine Center after being diagnosed with a pituitary tumor. Today, thanks to Dr. Theodore Schwartz and Dr. Vijay Anand, the iconic Letty Cottin Pogrebin is living her life — and doing her life’s work.
The tumor chapter in Letty’s life started when she developed terrible headaches. She had no history of migraines or other headaches, and these debilitating episodes were life-altering. The hammering seemed to be in the back of her head, but she couldn’t quite identify the source. “They were the worst when I would bend down to tie my shoe,” she recalls now. “A terrible, stabbing pain. It was terrible to wake up in the morning and have to think about whether I would have a headache that day — it really impeded my ability to get up and go.”
It never occurred to Letty that her headaches were related to some of the other changes she was experiencing. Rings that had once fit were now too tight on her fingers, which she attributed to retaining water, and her formerly size 5½ feet had become size 8s, which she chalked up to the flattening of her arches as she got older. She didn’t think of these changes of symptoms of anything, except possibly aging, so she had brushed them off. She had her rings resized and bought shoes one or two sizes larger, and never mentioned these bodily changes to her doctor.
In a way, then, the headaches were a good thing, because they prompted Letty to visit her doctor, who sent her to the neurologist, who sent her for an MRI, which held a surprise: a large tumor invading the bones just beneath the brain, in and around her pituitary gland. (Letty describes getting that phone call while in the produce aisle at Whole Foods.)
At first the diagnosis was not at all clear; the list of possibilities included some very scary tumors, as well as few benign ones. Letty feared the worst. “I knew two people who had died of brain tumors,” she says, “both of whom were gone in eighteen months. So I asked my husband, what do we want to do in the next eighteen months? I assumed I’d been handed a death sentence.”
Letty laughingly admits now that she was a bit catastrophic about the diagnosis. “I convened the family at an Indian restaurant, told them I had a brain tumor, and advised my six grandkids that if they wanted to get to know me, this was the time. I was so afraid of brain cancer!”
The first step, she was told, was to find the best brain surgeon she could who could perform a biopsy and, if possible, take out as much of the tumor as could safely be removed. This is where she encountered her second surprise. Letty’s neurologist told her that the best neurosurgeon for her invasive tumor was Dr. Theodore Schwartz. Letty knew that name, and that neurosurgeon.
“Ted Schwartz had dated my daughter at one time — for a while I thought he was going to be my son-in-law!” she exclaims. “I was hoping he didn’t have any bad feelings about their breakup,” she laughs. “I was going to let him go into my head, so I hoped he wasn’t angry!”
Dr. Schwartz was not angry at all, of course, and he also assured Letty that she didn’t have to work on an 18-month bucket list. Letty’s tumor was located in a part of the brain called the skull base and Dr. Schwartz specializes in accessing that part of the brain using a minimally invasive endonasal (through the nostrils) approach.
“The endonasal approach has truly revolutionized pituitary surgery,” says Dr. Schwartz, who is now the David and Ursel Barnes Professor in Minimally Invasive Neurosurgery and Director of Anterior Skull Base and Pituitary Surgery and Epilepsy Surgery. “Where we once would have had to remove a portion of the patient’s skull and then intrude into healthy brain tissue to reach a tumor, now we use the natural passages of the nose and sinuses, and tiny endoscopic tools, to resect a tumor.”
“You hear ‘brain surgery’ and you think of the worst-case scenario,” says Letty. “I imagined him having to open my head, so going through my nose certainly sounded better than what I’d had in my imagination. Of course, the more I thought about it, the more I thought ‘yuck’ — he’s going up through my nose?”
Letty had no doubt that she was in good hands, so she scheduled the surgery and tried not to worry. “I do everything I can to understand something, but once I’m in the hands of the expert I give myself up to it,” she says. Between Dr. Schwartz and Dr. Anand, the ENT surgeon who partners with Dr. Schwartz on endonasal surgeries, she knew she could surrender to them.
The surgery went smoothly, and the good news was that the tumor was indeed benign. It was a tumor called a pituitary adenoma, that had arisen from her pituitary gland, the part of the brain that secretes hormones. Letty describes her recovery in Shanda:
"After surgery, the nose on my face, never my best feature, looks none the worse for having been used as the turnpike to my brain. But I’m not out of the woods. I have double vision, so I can’t drive. My husband sees two lines running down the middle of the road, I see two sets of double lines going off in opposite directions. I can’t smell anything—coffee, garlic, a pie in the oven. My French perfume, Madame Rochas, may as well be Windex. I can’t taste anything either, including my A-list edibles, lamb chops, four-cheese pizza, walnut brownies. The aftereffects of the procedure are disorienting and distressing. Food and beverages have no flavor, only texture (wet, crisp, dense, hard) and temperature (warm, cold, tepid). This too shall pass, my doctors promise, but being someone who expects The Worst, I’m convinced my sensory losses are permanent."
Letty documents in Shanda, as only a writer of her caliber can, the ups and downs of post-operative recovery after endonasal surgery. Lucky for Letty, the losses weren’t permanent, and she was soon tasting, smelling, and seeing everything just fine.
As she documented in the first chapter of the book, although greatly relieved that she had come through her surgery unscathed and that this tumor would not limit her life expectancy, Letty’s first reaction was to feel shame, and to hide her diagnosis. She thought that if she were to tell the world she had a brain tumor, they would think her mental faculties might be compromised. For a woman who prided herself on being a thoughtful activist, thinker, and writer, this was completely unacceptable. Even though pituitary tumors do not push on the brain and do not impact thinking and decision-making abilities, such subtleties might be lost on her colleagues. Letty’s experience was not atypical of a patient diagnosed with a brain tumor, and the recounting of her emotional battle with her diagnosis makes for riveting reading. In fact, the publication of her book was also a public admission of her tumor diagnosis to the world, a secret she had previously hidden.
Yet another surprise awaited Letty. During the work-up for her tumor, it became apparent that what she had was not just a garden variety pituitary tumor — it was making a hormone called growth hormone. Letty was given the diagnosis of acromegaly, which explained why her rings and her shoes weren’t fitting anymore. Because the tumor was so large and wrapped around her carotid arteries (the major arteries that feed the brain) Dr. Schwartz was not able to remove every bit without risking injury to those blood vessels. Every two months Letty now gets an injection of Somatuline to keep that hormone in check. It did the trick and reversed the growth of her hands. “My rings started flying off my hands!” she exclaims.
“I always hope to be able to achieve a one hundred percent resection,” says Dr. Schwartz. “That’s not always the best choice, though. I didn’t want to risk damaging a blood vessel or a nerve that might give Letty permanent double vision or cause a stroke. The decision to leave a little behind wasn’t just because I knew Letty so well, and her entire family, but because these benign tumors have other treatment options, like radiation therapy and even medical therapy that can prevent them from growing. Sometimes it’s more prudent to leave a tiny bit of tumor behind to ensure that the patient leaves the operating room the same way they entered… only without their tumor.”
“I’ll always be deeply grateful to Dr. Schwartz,” says Letty. The entire experience was profoundly meaningful for her, and she includes many of her thoughts and feelings about it in Shanda.
"The doctors had repaired me, radiated me, and reassured me that I was not going to end up brain dead. My job was to internalize their prognosis, quit mucking things up with What-ifs, and take control of the one thing I could control."
Read a book excerpt from Shanda here, or purchase the book on Amazon.com, BN.com, or at an independent bookseller.
More about pituitary tumors | More about acromegaly | More about Dr. Schwartz