Across the Pond and Back Again

(My Last Blog for a While)

We’re back from London, an exhilarating trip from which we’re still recovering. As an OCD travel planner, my daily itinerary was what you might call “ambitious.” We didn’t have time for jet lag, thanks to a go-go schedule: two bus tours, a bike tour, four walking tours, a boat ride and a train excursion, among other adventures. London lived up to its title as one of the greatest cities in the world. Every day was an overload to the senses.

We stayed with my cousin Laurie and her husband, Wallace, whose job moved him to Europe last year. Laurie told me she decided, living abroad, that she would take advantage of every chance to do and see and explore. A fellow transplant had spent the first few months in London fixing up the house and getting settled, only to be transferred back to the States without seeing much at all. “Who knows how long we’ll be here?” Laurie said. “I don’t want to waste a day.”

That struck me as the perfect way to live. My intrepid cousin, who used to be afraid of heights, has so far climbed the Monument to the Great Fire of London (200 feet tall) and Big Ben’s clock tower (16 stories high). She rode the London Eye, the giant Ferris wheel with glass-enclosed cars, a couple of times. Laurie has visited just about every museum you can name, and she traveled to Paris on her own. She expertly guided us onto the Tube and flagged down buses from Notting Hill to Piccadilly Circus. She’s my hero.

When we landed, Laurie handed us a cell phone for emergencies, which meant we could turn off our own and actually be on vacation. I didn’t touch a computer all week. Graeme had to check email now and then, but guess what? The world didn’t fall apart while we were gone.

Back at home, it’s hard to plug in again. This afternoon, my husband said, “I don’t feel like working.” (Sunday off—what a novel concept!) The thought of checking Facebook or Twitter makes me tired. Trivia questions, once so easily Googled, are going unanswered. I realize now that this blog has become a distraction from writing, so it’s going on hiatus for a while.

The world suddenly feels a lot more peaceful.

Epilogue: Two weeks after this post, Wallace learned that his job was moving him to Atlanta. Laurie had three weeks to pack. In the meantime, she bought tickets to Wimbledon and took her sons on a bike trip to Paris. You go, girl.

A poem, a case of Scotch and a sledgehammer

What will you leave behind when you’re gone? A loving family? A life of good works? Don’t forget your dirty socks. Mean letters to the phone company. Pens that don’t work. I’ve spent a week cleaning out an old man’s closets, so I’ve had some time to think about this stuff.

As you may remember, we became the unofficial caretakers for our neighbor Andy, who was diagnosed with Alzheimer’s Disease and finally moved to an assisted-living facility. His house, sitting empty, needs to be sold. The friend who holds Andy’s power of attorney is elderly himself, so Graeme and I are tasked with putting the house on the market. First, we have to clean it out.

The place is only 15 years old, but Andy’s life as a bachelor, compounded by his mental decline, took its toll—grimy walls, stained carpet, long-term leaks. He was a tinkerer, so when his memory started to go, and something started to beep, he took it apart. The smoke alarms and dimmer switches are in pieces. There’s nothing left of the security system but a hole in the wall.

As with any man who wasn’t a monk, Andy’s house is full of stuff. Every scrap meant something to him once, but nobody else sees much of any value here. How should we dispose of his worldly goods? A garage sale? Goodwill? The dump? A family member ought to be here, making these decisions. I shouldn’t be the one going through his underwear drawer. God help me.

Andy was an intensely private man. He never invited us into his home (or his life) until he got sick. From the bottles in his medicine cabinet, I learn about his aches and pains. From his books, I find that he struggled with depression, just like me. Also like me, he started many a journal, only to lose interest after a couple of days. The notebooks are perfectly good, once you rip out the first few pages. I hope someone does the same for me one day.

If Andy’s thoughtful side surprised me, so does his fondness for the poem “Desiderata.” He kept copies in every room of the house. For someone who couldn’t resist an argument, Andy must have needed a reminder to “go placidly amid the noise and haste, and remember what peace there may be in silence.”

Along with this poem, I also found multiple copies of Andy’s favorite cartoon, a man in an office, peeing on a desk. The caption: “I quit!” That’s more like the man I knew.

If we were family, I’d sit and go through his photo albums. We’d set up the slide carousels and watch a show. But we don’t know any of these faces. Neither does Andy. In the end, he forgot his own wife, the love of his life, who died 25 years ago. I found her picture in a drawer. Andy’s sister, who is still alive, told me over the phone that she’ll take any family photos without Andy in them. Apparently, she and her brother weren’t close.

The other night, my sister and her kids helped me empty Andy’s office. My niece, a budding photographer, found a dusty 35mm camera. (You know, “the old kind, with film.”) I loved the idea of passing on a piece of Andy’s history, his passion, to the next generation, so it went home with Callie, the start of her antique camera collection.

My nephew unearthed a strongbox. It was heavy, and it rattled when we shook it. What treasures did Andy keep locked inside? (FYI, if you don’t have a key, try the little ones that came with your luggage.) Inside the box were home movies. Reels and reels of them. Maybe they’re X-rated. Maybe they’re better angles on the Zapruder film. We’ll never know, because the movie projector is lost, and so is the director.

In another closet, we found a suitcase and a filing cabinet, also locked. I understand how Geraldo must have felt, opening Al Capone’s safe—Andy’s secrets were his Playboy collection and dozens of bottles of booze. I thought he only drank beer, so why did he keep old Vermouth and Kahlua and Seagram’s in a drawer, gathering dust? Hoping for one last party?

So many mysteries in this house. What’s the giant pot of dirt doing in the middle of the bathroom floor? When did the closet racks fall off the wall? (And how long did Andy keep hanging his shirts on the floor?) How did he sleep with so many weapons under his pillow? In the sheets, I found a hunting knife, a hammer, a monkey wrench and a crowbar. Under the bed were three more knives, an axe, a sledgehammer and a set of hedge clippers. (We took away the rifles after Andy shot the mattress.)

It breaks my heart to think of a tough guy like Andy, huddled in the dark with his wrench. “Do not distress yourself with imaginings,” his favorite poem said. “Many fears are born of fatigue and loneliness.”

Andy always told me he only wanted to be left alone. He got his wish.

Thanks to him, I’ve gone back and reread “Desiderata” several times. This is the part I want to remember:

Whatever your labors and aspirations,
in the noisy confusion of life, keep peace with your soul.
With all its sham, drudgery and broken dreams,
it is still a beautiful world.
Be careful. Strive to be happy.

Dr. Lentz and the Cancer Cure

Or “Stranger Than Fiction: How Frank Lost the War”

As usual, this blog is about anything but books. Something happened this week that I’m still trying to process. It all started in 1998, when my father-in-law, Frank, was diagnosed with cancer. I woke up the other day thinking about the doctor who promised to save him.

Back then, Frank didn’t want surgery or radiation, so he went to an “alternative” clinic offering chelation—normally used for heavy-metal poisoning—and vitamin shots imported from Germany. That doctor referred him to a specialist in Nashville, Dr. M. Rigdon Lentz, who was conducting an FDA clinical trial. It was supposed to be THE cure for cancer, the biggest news in history. Frank didn’t blink about paying $30,000 in cash. (And this was 20 years ago.) We were alarmed, of course, but what if it worked? Online, I found an AP story about a widow who filed suit against Dr. Lentz for giving her husband “false hope.” The couple’s church had raised $60,000 for the treatment, which they considered a miracle. Dr. Lentz told the dying man his tumors were gone, when one had grown as big as a baseball. By phone, I talked to the wife, who said she’d heard from dozens of families with similar stories. All of their loved ones pinned their last hopes on Dr. Lentz. All of them died.

Granted, these people were terribly sick in the first place, so Lentz could hardly be blamed for their deaths. He was a loving, caring man who wanted only the best for his patients. My father-in-law adored him, and didn’t appreciate my skepticism. In my research, I found it strange that Frank, who had early-stage prostate cancer, was accepted into a trial for metastatic breast, melanoma and colorectal cancers. Years later, we would read about these “breaches of protocol” in FDA memos.

Frank quickly ran through his life savings, along with loans from family and friends. The treatments made him terribly sick, but that just meant they were working, or so he was told. When his money ran out, Dr. Lentz announced that Frank could go home—his scans were clean! In fact, the cancer had spread. By the time Frank reached the Cleveland Clinic, it was too late. The oncologist, hearing about Nashville, got so mad, he had to leave the room. He said that Frank’s cancer would have been among the easiest to treat, with a survival rate of 95%. Frank died later that year.

In 2006, Dr. Lentz pleaded guilty in federal court to a charge filed by the FDA. Warning letters cited “serious violations” in his clinical trial, including failure to obtain informed consent and treating patients “off-study.” He also “failed to report all deaths/adverse events that occurred.” (If you’ve heard that these were merely “administrative errors,” I urge you to read the report filed by the FDA inspector, who found boxes of “dead patient files” in the hall.)

We thought Dr. Lentz’s practice was closed for good. Just to be safe, I searched his name occasionally, and that’s when we heard he’d set up shop in Prien, Germany, with his wife, Kiran. Over time, I found a few Facebook posts from families who raised money to send their loved ones overseas, but the stories always ended in funerals, and the clinic was in a foreign country, so what could we do?

Even Farrah Fawcett went to Germany for treatment (a different clinic). I started to wonder if maybe the hype was true. At one point, news reports said that Farrah was “tumor-free.” Sadly, we know how her story ended.

So, on Monday morning, I woke up out of a sound sleep, thinking about Dr. Lentz—the first time in ages. Something made me go to my computer, and when I searched his name, up came a story about a young man in Canada battling a rare form of cancer. His family was trying to raise $180,000 to send him to Dr. Lentz.

And I thought, oh, my God, I have to tell them.

But tell them what? These poor people were desperate for a miracle. Who was I to question their chances? What if I was wrong? It took all day to write the email. The next morning, I heard back from his family. They’d been on their way to book tickets to Germany. Now, the trip was canceled. There had been doubts all along, but nobody wanted to steal the young man’s hope. They called my email “a gift from the universe.”

Today, I’m putting our story out there for others to find. We didn’t say anything all those years ago because, like everyone else, we wanted the cure to work. It was inconceivable to us that a doctor could look a dying man in the eye and promise to help—and take every last penny he had—unless the promise was real. We hoped that one day, Frank would be part of medical history, and Dr. Lentz would win the Nobel Prize.

In his online credentials, Dr. Lentz says he is currently a “senior research scientist of the International Center for Interdisciplinary Studies of Immunology of Georgetown University Medical Center, in Washington, D.C.” I searched the Georgetown site and found no mention of him, so I asked the medical center to verify his title. Their written response: “We did not find Dr. Lentz in our directory.”

There’s a frustrating lack of information elsewhere. In their research, the Canadian family sought the opinion of Dr. Ralph Moss, a consultant in the field of non-conventional cancer treatments. He charged $20 for his report on Dr. Lentz, along with a $300 treatise on their specific diagnosis. Dr. Moss holds a doctorate not in medicine or science, but the classics. He was a proponent of laetrile. When Frank got sick and we looked for answers in 1998, Moss was Dr. Lentz’s biggest supporter.

If you’re reading this, you’ve probably heard about the conspiracy to suppress cancer cures. Dr. Moss wrote a book about it. The medical establishment, the FDA, the drug-makers—they’re all involved. Thousands of people are trying to block the cure that would save their own mothers. Pay attention the next time you hear this, and I promise you: Someone will be trying to sell you something.

I’m a firm believer in holistic medicine and non-traditional methods of healing, and I know that American regulations can keep effective drugs from reaching the market. But we have to use common sense. If a doctor discovered a cure for cancer, the pharmaceutical giants of the world would beat a path to his door. He wouldn’t have to work in a tiny clinic in a foreign country. There would be dozens of published reports about his success. And maybe, after refining his methods for 30 years, he would have found a way to lower his costs, so as not to bankrupt the families he’s trying to help.

How much is time worth? How much would you pay for a few more months on earth? These are the questions faced by terminal patients exploring alternative options. Dr. Lentz’s treatment, which has gone by the names of Apheresis, Biopheresis, Ultrapheresis, Immunepheresis, Immunopheresis, OncoPherese and now, LentzLoc, is said to be a medical breakthrough—but where is the independent data? Claims made on a web site don’t count as clinical proof. We hear impressive things about tumor reduction, but I have yet to see any published statistics on long-term survival. One woman whose sister is still in the fight [passed away in 2014] said, “I don’t believe it’s a ‘cure,’ but it buys time. I tell others to do their research.”

Update: According to Dr. Ralph Moss, the Lentz clinic finally closed in 2023. This blog is 12 years old. In all that time, I never heard from a patient in remission after treatment from Dr. Lentz (or even one who survived the trip home from Germany). I did, however, hear from scores of families whose loved ones died, hoping immunepheresis would save them. Several doctors told me they spoke by phone with Dr. Lentz, who was quite convincing about his methods. They later regretted not listening to their guts.

Here are two articles that were recommended to me about the choice between palliative care and “futile care.” The first, written by nurse Amy Berman in the Washington Post, describes her decision not to seek aggressive treatment for stage-four breast cancer. The second, How Doctors Die, urges a discussion about quality of life over quantity when faced with a dire prognosis.

An Update on Andy

Friends have asked for an update on Andy, our neighbor. I recounted his story in earlier posts. In the last installment, he’d just moved into an assisted-living facility, and the adjustment wasn’t going well. I stopped writing at that point because, quite frankly, it got too depressing. We’d hoped that a new environment—better health care, regular meals, company—would be good for him. Instead, the strange surroundings only hastened his decline. He slept all day. We worried that the staff was keeping him drugged. They told me he stayed up all night, rearranging his furniture. The exertion made his legs swell. He collapsed, turned blue and was taken to the hospital. Tests showed nothing wrong. He removed his own catheter. The hospital sent him home, still bleeding. I spent ten hours in the emergency room, trying to get him readmitted. Because I wasn’t a relative, each new nurse and doctor insisted on grilling Andy about his symptoms.

“Where are you bleeding, sir?” [look of panic] “I’m bleeding?” [repeat 15 times]

It’s been five months now, and several more trips to the hospital. After Andy came home the last time, a nurse at Grand Villa called to tell me she’d arranged for hospice to make an assessment. “I know that vacant look,” she said. Andy rallied the other day, coming out of his fog long enough to tell a friend, “You’re not giving me enough information.”

I tell Andy’s story as a cautionary tale. Don’t think it can’t happen to you. Get your papers in order. Be nice to the people who might take care of you one day. Gather ye rosebuds while ye may.

Happiness on a Sad Day

My novel, The Arsonist’s Last Words, was released by Mansfield House Books today. The trade paperback and Kindle versions are available on Amazon. Other eBook versions (iBook, Nook and Sony Reader) will roll out in a few weeks.

I hope you’ll read and let me know what you think. If you like, please feel free to submit an online review. If you don’t, a ranting email is fine. This was a 10-year labor of love, started in the months after 9-11 when I (like everyone else) was trying to make sense out of what had happened.

In some small way, I hoped to honor those who died that day.

They will never be forgotten.

Almost to the Finish Line

It is with great pride and no small amount of disbelief that I announce next month’s publication of The Arsonist’s Last Words. Mansfield House Books will release it on Sept. 11 in trade paperback and digital versions (iBooks, Kindle, Nook and Sony Reader). This novel took eight years to write, and there were times when the finish line seemed out of reach, so to have the print proof here on my desk is astounding. A heartfelt thanks to my family and friends for their endless support and encouragement. (Seriously, you must have started to doubt whether the thing actually existed.) Please visit the publisher’s web site for more information, and stay tuned for updates here and on Facebook.

Mister Eugene's Neighborhood

This was supposed to be a blog about writing, but ailing friends and senile neighbors hijacked the thread. Cheery stuff. Recently, I vowed to get back on track, keep things light, be funny, remember to mention my book coming out in the fall. Me, me, me. Oh, and did I mention the funeral this weekend?

The universe has a way of slapping you back to reality.

From top left: Don, Jim, Gene & Graeme

We’ve lived in Orlando for 28 years. The gentlemen in the photo at right have been my husband’s friends for nearly that long. It all started when two of them went to a car race in Sebring. Now, the mailing list for their annual camping extravaganza runs into the dozens. Our garage is packed with tents, coolers and cooking equipment for once-a-year use. The menu-planning starts months in advance. I used to be jealous of these guys who monopolized my husband’s attention. Sebring was like the other woman. Eventually, I realized there was no fighting it, and I came to love the peaceful weekends when Graeme went off on his male-bonding adventures.

Boys from New York, Florida, Virginia & Washington

And oh, the stories. Get these guys in a room together and they laugh themselves silly. As the saying goes, what happens at Sebring stays at Sebring, but we wives have heard a few snippets. There was the time Gene pulled the plug on the headliner band, and the midway went dark. There was the time Gene barfed in his hat and wore it. There was the time Gene choked on a pretzel and nearly died, but went back to eating (and drinking) as if nothing happened.

Gene at Sebring, 1991

As you’ll notice, Gene figures prominently in most of these tales. He was one of the loudest, most profane men I ever knew, and also one of the smartest. He was an almost-English major, a civil engineer, a fan of the Three Stooges. He’s often pictured at Sebring with a margarita in one hand and a glass of Knob Creek in the other. The only time I ever attended a car race, he almost got us kicked out for dropping the f-bomb—repeatedly, at the top of his lungs—from the bleachers. It was family night at Auburndale Speedway.

With Gene, you couldn’t help laughing. You always knew where you stood with him. It was against his religion not to tell you. When he was diagnosed with lung cancer, he admitted his chances were 50-50. After surgery and chemo, we thought he’d beaten the odds. He quit smoking, lost 40 pounds, took up yoga. (Hell got its ice-skating rink that day.) He made a whole new circle of friends in his cancer survivors group. Then—a stroke, emergency brain surgery, and a decision no family should ever have to make. Gene was taken off life support on May 4th. 

There was a lot of laughter at his memorial service, but the funny stories couldn’t mask the fact that Gene died much too soon, and the world is too quiet without him. Graeme was expected to say a few words, but he couldn’t do it. What can you say about losing a brother? I’m sure he would have said that some of the best times of his life were spent with Gene, sitting around the campfire late at night, talking, listening to tunes. At this point, he would have choked up, because he couldn’t tell a roomful of strangers just how much his good friend meant to him. It’s not what guys do. They show up, year after year, drink beer, tell stupid jokes, abuse each other. It’s love, of course, but they will take that secret to their graves.