Thursday, May 26, 2011

Things That Go Bump in the Night

What I did on my summer vacation. August, 2009
Cancer changed me. But it doesn’t have to change you, or the lives of your children. There is a vaccine out there now to prevent the kind of cancer that side-railed my life for the last two years. The vaccine guards against human pampilloma virus (HPV) which is transmitted sexually. I know that your daughters and sons are far more virtuous than I was, but know this: sexual transmission of HPV can occur with beginner stuff—French kissing. The latest research suggests that boys should be vaccinated, too. HPV most frequently causes cervical cancer in women, but has now been clearly linked to throat cancer in women and, more often, in men.
    It has now been established that the path that brings people to oral cancer contains at least two distinct causes; one through tobacco and alcohol, and another via the HPV virus, particularly version 16.  Evidence shows that two-thirds of cancers of the tongue and tonsils are caused by HPV—and 80% of these cases occur in men. My cancer was at the base of the tongue. According to the Centers for Disease Control the HPV positive group is the fastest growing segment of the oral cancer population. That’s scary.
The morning after four hours of surgery. April, 2010. Thanks Dr. Arnold.
    This research and new information has been unfolding in the two years since my own cancer was diagnosed. Because I am not a smoker or a drinker I figured my cancer was probably HPV related, and this week I learned that my tumor did test positive for HPV 16. That’s good news. Such good news that when my surgeon, Dr. David Arnold, talked to the pathologist on the phone, I cheered when he confirmed HPV 16.
    “Yaaaaay!” I yelled.
    “That’s the patient cheering,” Dr. Arnold told the pathologist, smiling broadly. Then he hung up the phone and smacked me a big high five. Like I’d won the lottery.
    What I’ve won is a better prognosis. HPV-related throat cancer in people who don’t smoke or drink responds well to treatment. One researcher says that the survival rate for people like me is 85%. That’s big news. That’s a high five for sure. 
    People sometimes talk about a cure for cancer as if it will be a whiz-bang thing. Instant. But I think that curing cancer will continue to come in little ways, a tiny bit at a time. My Key West radiologist, Dr. Sandy Shultz, says that cancer is every bit as cunning an enemy as Al-Qaeda.
Our beloved friend, Eileen Reeve, RN. August, 2010
    If you have a lump or bump that doesn’t go away in 21 days, you need to tell your doctor. The bump in my neck was painless, tiny and deadly. I mentioned my bumpy lymph node to my doctor only because I figured after so many years of sterling, and therefore boring, good health, I owed her something. I wouldn’t be here today had I not brought it to her attention. She saved my life. We saved my life. Don’t ignore stuff that wasn’t there before. Don’t expect cancer to offer any clues. Remember, it’s cunning and often silent until it’s too late.
    Second, please do some research and decide whether or not you see the value in vaccinating your children for HPV. Scientists are now concluding that boys should be vaccinated, too. Ask your doctor. Go on line. Check it out. You might save a life.
    As my wise son said, when I considered whether or not to have the just-in-case chemotherapy after my cancer was surgically removed: “Mom, why wouldn’t you?”

Thursday, May 19, 2011

Miracle Baby

Stacie pregnant in Paradise
On May 13 we celebrated the birthday of Georgie Eggers, the boy we call the “Miracle Baby,” a baby who died before he was even born and then -- here’s the miracle -- came back, learned to breathe and cry and eat and laugh and talk, all quite spectacularly, in the eleven months since he was released from the baby intensive care unit of the Miami hospital. 
    George’s time in his mother’s womb was happy. Stacie is a well-loved woman, and particularly beautiful when pregnant. A few months before the birth Stacie, and her long-time partner Rob, staged a quintessential island wedding at Higgs Beach followed by a reception at Salute. Stacie ordered her dress from  maternityweddingdresses.com. Family, friends and their four daughters, his, hers and theirs, stood in the warm sun on a cool and breezy winter day, while Stacie and Rob promised to each other to stick things out together, forever. Their oldest daughters wrote the marriage vows and prompted their parents to recite them to each other. Most of the wedding guests cried. It was so sweet. They were so happy. Stacie was so beautifully pregnant. Their daughters wore white dresses and matching high-top sneakers.
The wedding party
    Days later Stacie visited the doctor for an ultrasound and a peek at the baby in her belly. The doctor pointed out something that had not appeared on any of Stacie’s babies before.
    “See that?” the doctor said, pointing. “That’s a penis.”
    “Oh no, I don’t think so,” Stacie said, leaning over to brush the speck away with her finger. “That’s just dust or something on the screen.” 
    It wasn’t dust. It was big news. A boy! With four sisters, and a hundred more family and friends, joyfully anticipating his arrival. A boy, who would be called George, after his grandfather George, a superstar in his own right, who’d died just a month earlier.
    The labor started in the wee, dark hours after the other kids were asleep. At the hospital all went normally, although I hasten to add my nurse mother’s admonishment to me about birthing babies: no two births are ever alike. Nonetheless, Stacie knew the ropes, having been in the same position twice before with predictable results. She huffed and puffed and endured the labor. Rob was supportive. The nurses were great. There was joy. There was laughter. Everything was good. And then, suddenly and horribly, everything was bad. 
    Shoulder dystocia is when, after the birth of a baby's head, the baby's shoulder gets caught under the mother's pubic bone preventing delivery of the rest of the baby. It is rare, happening in only 0.5% of all births. It is every obstetrician’s worst nightmare. Generally it happens to women with gestational diabetes, or to particularly large women. None of that in Stacie’s case. It just happened, for no reason anyone can know. And when it did, George’s oxygen supply was cut off and . . . he died.        
    Stacie’s memories of that horrible few minutes are muddled. George was eventually unstuck, and immediately rushed away by a team of medics who battled to revive him. He was still. Perfectly formed. Beautiful even. But motionless. And breathless. No crying. No sound but the rustling of the medical personnel as they struggled to bring the baby back to life.
    As the critical care nurses who man the helicopter ambulance to Miami prepared George for the flight, Stacie asked “Please let me see his eyes.” So they did. They pulled his eyelids open and Stacie saw George’s blue eyes. Somehow, it calmed her. Then, the terrible phone calls. To family and friends. The new baby news was not good. George’s sisters were told when they came home from school. Throughout the day the word of George’s birth spread around the island. Stacie’s out-of-town family members began to arrive, one by one. The vigil was on. Each day we waited for news from Miami. Stacie pumped breast milk for George, froze it and took it to him every few days.
Georgie (6 months old) and Michael
    Baby Georgie was quickly tagged the “Miracle Baby” after surviving his first hours on earth. He breathed with the help of a respirator, that pushed the air in and out of his lungs. IVs delivered drugs into his blood to prevent him from having seizures. Tubes poured Stacie’s milk into his stomach. Then the respirator was turned off. He breathed. Then Stacie fed him. He sucked. Then, his brain waves waved back to the doctors. His brain was intact! George was making it, a breath at a time. What had been a grave prognosis grew more promising with each passing day. 
    One day Rob and Stacie were headed to Miami with a supply of frozen breast milk. Their two-year-old Lev was there, too, strapped into her seat and confused by the whirlwind of activity that had overtaken her family. In Marathon, at the end of the Seven Mile Bridge, where the speed limit is 35, they were stopped for speeding. The cop asked Rob where he was going “in such a hurry.”
    “The baby. . .” he stumbled. “The milk. We’re taking milk to our sick baby.”
    Then, to Stacie’s surprise, Rob began to sob. The dam of composure that had held him together since his son’s birth suddenly burst, his grief a flood. Then Stacie cried. And so did Lev.
Happy first birthday, Georgie. 5/13/2011
    “My son was there, too,” the cop finally said, choking back tears of his own. “Please drive carefully. Your son needs you now.”
     We were a bit wary of babysitting George when he first came home from the hospital. Through the years we’ve babysat all of Stacie and Rob’s girls, but this was different. Just before the family left us alone with the Miracle Baby for the first time his big sister Tessa, of the wry humor, cheerfully instructed that if George were to stop breathing we were to slap the bottoms of his feet. (Nothing like that has ever happened, thank goodness.)
    We love babysitting George. Seeing the little guy thrive, doing all the adorable things little guys do and doing them all well indeed, is better for us than any anti-depressant or meditation. He is affectionate. He giggles. He walks. He talks. I swear he says “Junie." Georgie is survival personified.
    This week George was given immunization shots. Five in all. He cried a bit, but quickly recovered. His sunny disposition surprised the nurse wielding the needle.
    “Wow,” the nurse said to Stacie. “He’s a tough little kid.”
    “Yes, he is,” Stacie agreed, adding, “he’s been to the other side.”

Sunday, May 15, 2011

Fort Elizabeth Taylor

Greetings from Ft. Elizabeth Taylor State Park
We’re at the beach. You will often find us here. It’s a great place to read, to rest, to avoid the real world. Sometimes we fix burgers at the beach because for my man there’s nothing like firing up the grill and cooking food on it in the great out-of-doors. All men seem to love this. You’d think they’d invented it. It’s silly, yes, but it’s bigger than all of us, so why fight it? 
    When special family or friends come to visit, we entertain with a picnic at the beach. I make my famous Martha Stewart Sandwich. Here’s how you do it. Buy a round loaf of whole grain or artisan bread and cut it in half as you would an English muffin. Dig out the bread until you have a cozy shell of bread and crust, bottom and top. You do this to make room for the stuff you’ll put into the sandwich. Layer stuff like fresh basil, lettuce, Italian salad dressing, salami, ham, smoked turkey, exotic cheese, mayo, tomato slices, mushrooms, or whatever other wonderful things you can pile into a Dagwood sandwich.  Use more salt and pepper than you think is enough. When it’s stuffed wrap it in Saran Wrap. Swaddle it tight, as you would a new baby. Then wrap that in aluminum foil. Put a heavy book, like the Big Book of AA or a Martha Stewart cookbook, on top to weight it down. Chill the whole thing, book and all, in the ‘fridge. After three hours or so, or overnight, the sandwich is ready.  A good Martha Stewart will feed eight people and set you back around $50. Take it to the beach, pull out a bread knife, cut the whole thing down the middle and slice off sandwiches.  You can make it vegetarian, too, easily. Everybody loves the the Martha Stewart Sandwich. Serve with chips and salsa and drinks.
Jennifer and June, John Jay High School classmates
    A few weeks ago we were here at the beach, Michael grilling hamburgers. My busy son Miguel made an appearance. Jennifer Ruger, a girl I went to John Jay High School with, entertained us with harrowing stories of her search for the perfect nest and job in her new home of Key West.
     “You got here too late,” I told her.
    “What time was I supposed to be here?” she asked. 
Miguel Perez and Peter Harrison jamming at the beach
    “About 20 years ago” I said. 
    She doesn’t care. She’s staying. She’s gonna squeeze that famous charm out of this old island no matter what it takes. Determination is one of her strongest traits. Jennifer’s landlady told her that you feel good at the beach because the salt air alters your body chemistry, something to do with charging ions, creating a sense of well-being. Leave it to a newcomer to explain to us why we are so happy here.
    It was a cloudless day. A little yellow airplane flew past the beach, trailing behind it a banner that said “Agate, will you marry me?” The plane made three passes and flew away, leaving us to wonder if Agate had noticed the plane, if she was indeed a woman, and if she was, how did we pronounce her name? Minutes later there was a small commotion a few hundred feet down the beach. It was Agate and her boyfriend!
    “What if she didn’t want to come to the beach today?” Miguel said. “What if she was sleeping when the plane came over?”
    Clearly, Miguel worries too much.
    Agate said yes. We cheered. Miguel played his jambai drum and I played “Here Comes the Bride” on my flute. Michael flipped hamburgers. Agate and her intended happily walked the beach, greeting their fans. People asked questions, as “were you surprised?” But the couple was European and not as talkative as we nosy, noisy Americans. I didn’t get the whole story, but learned enough to know that Agate had been totally surprised, and the whole thing was charming as all get out.
    “It costs $350 to rent that plane and propose to someone on the beach,” Jennifer said. “I asked.”
1997. Our first Thanksgiving at the beach. Hal Walsh's last one on the planet..
Heidi. Little Rocky meets Big Rocky.
    We’ve been coming to this end of the beach for many years. For fifteen years we’ve had our Thanksgiving at the beach, turkey with all the trimmings. It’s called the Hal Walsh Memorial Thanksgiving at the Beach. A great variety of people have shared our Thanksgivings through the years. Once a friend invited for the first time spent Thanksgiving Day searching every beach on the island. These were pre-cell phone days. We don’t lose our guests anymore.
    On one Thanksgiving Day a girl named Heidi showed up at the beach to meet my brother Rocky.  I wrote about Rocky a lot in my columns.  She loved the stories and she loved the name, so when she had a baby she named him Rocky. She brought little Rocky to meet big Rocky.
    Some people call Ft. Taylor Beach Ft. Elizabeth Taylor Beach. We like that.
    There used to be a lot of weddings at the point. Sometimes four or five couples a day. Brides showed up for the nuptials in traditional wedding gowns and high heels that sank in the sand, veils and bouquets and flower girls. They brought chairs and champagne and photographers who often doubled as wedding-on-the-beach stylists. There was a lot of sweat under those tuxedos, I’m sure. But oh! Those wedding photos were grand.  We had a girlfriend in those days who loved hamburgers made of the organic ground beef you get at Fausto’s. We called it the “good hamburger meat.”  Our friend would watch these proceedings, munch on her hamburger, and mutter “suckers” under her breath. Then she got married. Her new husband doesn’t like the beach. Now you have to pay a fee to get married on the beach. The park decided that they should get a little something when you use their beach as a wedding chapel.
    Michael and I can be ready for a picnic in minutes these days. We buy the annual park pass and even gave one to Miguel for his birthday. If we had a little cabana there it would be perfect. For many years we unfailingly forgot things we needed for our picnics and Michael would drive back to the house to retrieve forks or catsup or cranberry sauce.  But these days that happens rarely. We’ve got this drill down. We need our picnic basket and our cooler. Here’s how I keep the cooler cool. I take a plastic container, and fill it three-quarters of the way with water. I put it in the freezer. Then, when it’s picnic time, I pull my chunk ‘o ice out of the freezer and pop it into the cooler. We travel with our own ice cubes, too.
    When he was a little kid I used to bring Miguel here to play on the beach with his classmates. That was a long time ago. We rode our bikes to the beach and met up with all the other mothers and little kids. We moms sat in a row on the bluff watching our kids, chatting and drinking beers in the shade of the pine trees while our kids grew brown in the sun. One day Miguel’s Scottish Montessori teacher showed up, spread her towel in the sand, and pulled her shirt off to reveal naked breasts.  Miguel was five years old at the time. His eyes popped, but he didn’t say a word. No one did. We thought she was magnificently avant garde. And we didn’t want our kids, most of them breast fed in those days, to associate shame with bare breasts.
It's a bird. It's a plane. It's an invasive tree.
    Today Michael cooked hamburgers on a grill and the flies of May were out in full force. The only other time I saw flies this crazy was when a guy caught a fish, gutted it and gave it to us. Our friend, who owned a gallery in town at the time, wrapped it in a banana leaf and threw it on the grill. Fresh caught fish. On the grill. The men were practically orgasmic. The flies circled furiously. A few months later that guy died of a brain tumor. I’ve seen ashes of the dead thrown from that point on the beach, too. I don’t think they charge for that. Yet.
    There used to a whole lot more trees on this beach, but again the State has determined a better way. These trees are non-indigenous to this beach. Locals have fought for years to preserve the trees and the shade and comfort they provide. They’ve salvaged about a third of the trees that were here when Miguel was a little boy. 
    Michael has suddenly risen from his bench. He has been reading a book by Frank Zappa. He is entranced by something happening high in the trees.
    “Two woodpeckers,” he says. “And here comes another. You don’t often see those here,” he says.
    “You don’t?” I ask
    “Not in these invasive trees,” he says, gracing my yin with his yang.
Elizabeth Taylor closes promptly at sunset. I think this is the photo Jennifer shot when she got the sand in her shoes. You know what that means . . . there's no turning back.

Thursday, May 5, 2011

Rest In Peace, Mom

Nova Scotia 1950. Get me out of here! Check out that outfit. How does she always look so good without indoor plumbing?
On this Mother’s Day, my first one without my mother, I want to sound an alert in her honor. I want to talk about Progressive Supranuclear Palsy (PSP), the mysterious and cruel illness that tortured and ultimately killed her. PSP is a tragic disease, not only because of its torturous course. It’s also difficult to recognize. Sadly, researchers seem no closer to understanding PSP today than they were when Mom was finally diagnosed in 2007. Its cause remains a mystery.
    PSP is a disease of the brain, attacking six people in 100,000. PSP slowly kills off parts of the brain that relate to vision, swallowing, balance and speech. Because it occurs so infrequently, many physicians simply know nothing about it. That was Mom’s case. At first her vision went bad. She lost her ability to do crossword puzzles due to what she described as fuzzy eyesight. She lost her balance and tumbled frequently, seemingly without reason. She could not eat a meal without dropping half of it on the shelf formed by her amble bosom. Her weight skyrocketed as she became increasingly immobile. She also became incontinent, a fact I was sorrowfully to learn on a car trip from Florida to Nova Scotia. It was in Georgia that I pulled off the Interstate to find a drug store and buy her first package of adult diapers. She wore them for the rest of her life.
New York: Grasslands School of Nursing grad, 1965
    Yet not one of the many doctors who examined her could find a problem with her health. Yes, she had lost her ability to walk without the aid of a walker. And yes, her vision was strangely off. But she passed every colonoscopy and endoscopy and vision test and cognition test and blood test with flying colors.  She went for nights without sleeping. Dozens of medications were prescribed to help her to sleep. None worked. She became a habitual television watcher, a past-time that she’d long considered to be a big waste of time. She dressed in house dresses and stayed indoors to avoid the embarrassment of falling in public.
Mom and Dad. Forever young. (South Salem, N.Y.)
    As her health continued to fail, with no reason that any medical test or procedure could find, she considered that she was simply wearing out, that she’d burned the candle at both ends for many long years and this was the result of all of that. She’d been a nurse and worked the night shift for 35 years. She worked while her husband and three kids slept because she liked to party by day. She skied in the winter. She beached in the summer.
    As her habits began obviously to change, we scolded her for eating too fast, for not taking care of herself, for not exercising. Walk, Mom! Get out and do things, we urged. She said she couldn’t. We thought she was lazy, or depressed. We agonized when the phone rang, expecting the bad news from Sebring, Fla. of another mishap involving Mom, who was supposedly quite healthy.
    Claiming that her lovely home had become too big for her to handle, she sold it and bought a tiny trailer in a seniors-only trailer park. She had the floors redone. The walls painted. She bought new kitchen appliances. But it was still a trailer, and we were mystified as to why she chose such a modest dwelling when she could afford so much more.  Then I understood. I observed that when she walked from the living room to her bedroom she used the walls to keep her balance. Everywhere in that trailer she had a place to hold on to, to keep her on her feet.
    What was wrong with her? I took her to eye doctors, five total, and not one could find a problem with her eyes. By then she was incapable of reading or writing. In the hospital, after a fall, a nurse asked me “is your mother blind?” We were advised to place her in a nursing home, but she countered that she was healthy. Every test said so. Why would she give up her independence when there was nothing wrong with her? If she fell and broke her neck, so be it. 
    We hired people to come into her home and clean, cook and take care of her dog. Her condition continued to baffle us, and her. Four uneasy years passed.
Who needs sleep? Mom worked by night. Partied by day.
    One day my husband Michael said “I think I know what’s wrong with your mother.”  He’d read an obituary of a woman who’d died after a courageous struggle with Progressive Supranuclear Palsy. He’d researched the subject and was soon certain that Mom was a victim of PSP.  He was right. She was.
    The description of PSP matched Mom’s symptoms exactly. We got Mom to a neurologist who confirmed our suspicions. (The first neurologist she saw insisted she had Alzheimer's Disease, a diagnosis that in no way matched her symptoms.) The prognosis was ugly and sad. Mom’s main risk factors were falling and choking. PSP patients often died of pneumonia from inhaling food, he said. He also told us that there was nothing to be done. She would die. Slowly.
A favorite photo. Mom, Rocky, me.
    That was in June, 2007. She died in a nursing home in August, 2010, completely blind, wheelchair bound, and eating a diet of pureed food—the most horrible insult of all, she said. She broke a hip. Then she got pneumonia. She survived all of that and four months later broke her other hip. She died in her sleep, days later, hours after being released from the hospital.
    She had a nice nest egg by the time she retired at age 62. She’d carefully saved her money, and even inherited a bit from her own mother, but she died nearly penniless, having spent a fortune on her care during the last five years of her life. Running out of money was a constant fear. And the fear of dying by choking to death was always with her, too, she told me.
    I’m telling this story to inform as many people as we possibly can of the disease of PSP. We were surprised and heartbroken at how many medical professionals failed to recognize Mom’s illness. Ultimately it was my husband who diagnosed her, and he is a songwriter.
   We donated our mom’s brain to the Florida Brain Bank and learned from her autopsy that her disease was definitely PSP with no other disease process. A neurologist in Key West told me that Mom’s was only the fourth case of PSP in his career. He said PSP had probably shortened her life by ten years. She was around 70 when she began her decline. She was 77 when she died.
    Others who have died of PSP are Dudley Moore, the actor, and Teresa Brewer, a singer, who died at the same age as Mom. Doubtless there are hundreds of people suffering right now with this strange and hellish illness that goes unrecognized more often than not. Once we knew what Mom was suffering from we hooked up with the PSP forum, where the various features of PSP are discussed online daily. It gave us immeasurable relief.
    I’m telling this story with the hope that it will help someone, somehow, or some way, to recognize or to manage this particularly horrendous illness that my amazing mother handled with remarkable humor, grace and courage. 
    Happy Mother’s Day, Mom. Rest in well-deserved peace.

Here's a song Michael wrote with his Nashville friends Dave and Matt Lindsey.
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