Lisa Thomas-Laury couldn’t have been more satisfied personally and professionally in 2001, until a debilitating, rare blood disorder began creeping through her body, assaulting her immune system, and ransacking her nerves from her feet to her vocal cord. After suffering through chemotherapy, the loss of her hair, dozens of medical procedures, and a stem cell transplant over nearly three years, she received the correct diagnosis that arrested the violent intruder and saved her life.
Lisa, who will be the opening speaker at the 70thAnnual Philadelphia Writers’ Conference (PWC), 9:30 a.m., June 8, gave an interview for the PWC audience about her memoir, On Camera and Off: When the News Is Good and When It’s Not. She also shared tips for writing your own incredible story.
The Emmy-Award winning news anchor for Philadelphia’s ABC affiliate, WPVI-TV and her husband, Dr. William Laury, a local internist, were looking forward to again living as a couple, as their oldest son completed his junior year of college and their youngest approached high school graduation.
“When I felt the first symptoms I was a really busy mom of two sons, full-time TV anchorwoman and I ignored it for a while,” said Lisa in the family room of her Haverford, PA home. “I was at the height of my career, but more importantly, I was in the best shape of my life when this happened. It was the last thing I would’ve expected. I had a regular regimen of working out with a trainer and powerwalking. Physically, I had great energy and this just came out of nowhere.”
Lisa felt weakness in her ankles and a constant stabbing sensation in her feet. An EMG confirmed a 30 percent loss of strength in her lower extremities. Soon, the tops of her feet became so hypersensitive it was excruciating for her sheets to touch them. The soles of her feet, on the other hand, hardly had any feeling at all – causing her to burn them while walking barefoot across her driveway. Soon, she began having trouble standing or walking without help.
Lisa and her husband searched for answers from podiatrists, neurologists, hematologists, oncologists, and a gastroenterologist. An otolaryngologist performed an ultrasound on her larynx and discovered that the frailty in her voice was caused by a paralyzed nerve in her left vocal cord.
Some doctors thought Lisa was suffering from multiple sclerosis, others said she had Guillain-Barre Syndrome, still others suggested lupus might be the culprit. Then, for more than two years, Lisa was misdiagnosed with the crippling autoimmune disease, CIDP (chronic inflammatory demyelinating polyneuropathy). One doctor even explored the possibility that the toxins from pesticides and plastics manufactured at the Union Carbide plant, just a few hundred yards from her childhood home in Institute, WV, may have been the underlying genesis of the baffling illness.
Lisa underwent “numerous bone surveys, biopsies, bone marrow aspirations, nerve conduction studies, ENGs, EMGs, EKGs, X-rays, MRIs and many more tests,” she wrote. “I was also taking about a dozen different medications and a myriad of supplements.”
Acting as her own advocate, in March 2004, from her online investigations, Lisa discovered an unconventional treatment facility in Marco Island, Florida. It promoted physical therapy and a restrictive diet as a cure for cancer and other diseases. There she ate meals of lentil soup and seaweed salad, and drank cucumber juice. She also had her colon cleansed and experienced reflexology therapy on her fragile ankles and feet.
Finally, in May 2004, Dr. Angela Dispenzieri, a hematologist specializing in POEMS syndrome at the Mayo Clinic in Rochester, MN, confirmed that Lisa had POEMS, a plasma cell dyscrasia, or a “smoldering myeloma” and that it was “shutting her body down,” one organ at a time. This was a time of relief and frustration because POEMS was the original diagnosis Lisa had been given by her husband’s mentor, Dr. Edgar Kenton, former chief of neurology at Lankenau Hospital, in Wynnewood, PA, in 2001.
What is POEMS?
P– polyneuropathy, the simultaneous malfunction of many peripheral nerves throughout the body
O– organomegaly, organ enlargement
E– endocrinopathy, a disease of the endocrine glands that can damage the heart, bones, and tissue
M– monoclonal gammopathy, an abnormal protein in the blood
S– skin abnormalities, such as hyperpigmentation
Lisa had the P, M, and S symptoms of POEMS when she was diagnosed.
Two Stem Cell Transplants Extinguish the Smoldering Myeloma
Lisa received her first stem cell transplant in May 2004 and the second in April 2015. Her transplants were autologous because she was the donor and recipient. She had enough “good” bone marrow to harvest and use from her first transplant and freeze for future transplants. Stem cells in Lisa’s bone marrow were collected as blood was removed from one arm and passed through a filter and cell separating machine. Her blood was returned to her other arm as her good bone marrow was restored into her bloodstream. For about two weeks before each transplant, Lisa was administered heavy doses of chemotherapy that caused hair loss.
“With the transplant, my immune system had been totally wiped out and rebooted,” Lisa wrote. She later received vaccinations for hepatitis B, polio, mumps, measles, rubella, varicella (chickenpox),Haemophilus influenzae B, and pneumonia (a pneumococcal 23-valent).
Lisa’s Opioid Addiction
Because of the pain, mostly in her legs and feet from the POEMS, Lisa received the prescription OxyContin, also known as oxycodone. But after nearly a year of taking the medication, she discovered the opioid was doing more than enabling her to dodge her pain. “I didn’t yet realize that I had developed a dependency on the narcotic,” Lisa said.
Then one day she forgot to carry the drug with her on a family drive to Dulles Airport outside of Washington, D.C. An hour past her usual dosage time, she began realizing how dependent she was on it. “I was becoming anxious and increasingly agitated,” Lisa wrote. “I wasn’t taking the OxyContin for pain. I was taking it because I needed it. I was dependent on it. I was addicted!” She soon enrolled in the two-week Mayo Clinic Prescription Drug Dependency program for treatment. Almost six months after completing drug rehab, Lisa was able to return to work at Channel 6 Action News, in January 2007.
Coming Full Circle
“After anchoring the news for nearly 30 years, I was reporting now, and filling in as an anchor for various newscasts, including the weekend,” wrote Lisa, who at 24 years old in 1978 was Philadelphia’s youngest news anchor and one of the first African American women in this market. “Reporting was how I had started in the news business, and it was what I loved most about my job.” But after seeing TV news from a different viewpoint, while on medical leave, she no longer wanted to cover murders and other tragic, negative stories. “I wanted to introduce our television viewers to more positive stories about people overcoming obstacles and illnesses in their own lives.” Two of those extraordinary people were a 92-year-old man, who received a Doctor of Chiropractic diploma, and a 10-year-old girl with alopecia, providing hats with faux hair to other children who lost their hair through illness. Lisa officially retired in May 2016.
With a rearview mirror perspective of her experience, Lisa’s message for others suffering a health crisis is, “Never ignore it,” Lisa said. “It got to the point where my condition was consistently and rapidly deteriorating. Take care of yourself and pay attention to those signs and symptoms. Life is unpredictable. You never know when something’s going to hit you.” Now, when she’s asked to have any medical exam like a colonoscopy or mammogram she doesn’t delay making an appointment.
Today, Lisa, 63, said, “My health is much better. I still have POEMS. It’s in remission.” She wears leg braces sometimes, but she no longer needs a wheelchair. She was having trouble driving because of numbness in her feet, but since working with a physical therapist, she is driving again. Lisa has a positive outlook from her experiences. She wrote, “I’ve gained much more knowledge in my pain than I have in my bliss, and I appreciate my happiness more, having understood sorrow.”
Since writing her book, Lisa enjoys spending time with her first grandchild and she has partnered with the home health care agency, Angels On Call, which offers quality home care to people who need it in the Philadelphia area. In the months before her second transplant, she had looked for such a place for her mother, knowing she wouldn’t be able to care for her. However, the choices were limited and the quality, lacking. Her mother passed in 2016. “Angels On Call offers the home care services I would have wanted for my mom,” she said. “So right now, I’m enjoying being an ambassador for Angels On Call and being on my book tour, speaking to people about taking care of themselves, being strong advocates for their own health care and just sharing my message.”
Lisa Thomas-Laury’s Tips on Writing Your Memoir
Keep a journal –
“I didn’t initially plan for it to be a book not in the traditional sense where you promote it and sell it for public consumption,” Lisa said. “I always thought I would write a journal. My mother and my husband both encouraged me to keep a journal when I was sick because my disease was so perplexing and mysterious. In the beginning we didn’t know if it was hereditary or not. So, I kept lots of notes about different medical personnel that I met.” But her youngest son, Leland, told her he thought she might help some people with her experience if her journal became a book. So, Lisa agreed and said that’s when “I got my notes together and started writing.”
Enjoy writing –
“I think I always knew that I would start my book with a period in my life back in Institute, WV, where I grew up, when I first realized that I loved writing,” Lisa said. “I loved anything having to do with journalism. I knew I wanted to pursue a career in that. I was about nine years old. I started writing plays for my third- and fourth-grade classmates. So, that’s how I started the book. I sort of started from the beginning and weaved the medical part of what I experienced in with my love of writing and how it transpired into a career.”
Research and fact check –
During her writing, Lisa spoke with other patients with similar symptoms. She also looked up terminology online to better decode what her doctors had conveyed to her. “You have to be careful who you see and not to be afraid to change doctors,” Lisa said. “Get a second, third, fourth, fifth, and sixth opinion if you have to.” Lisa also wrote, “If you don’t agree with or understand something your doctor has told you, ask him or her to explain it better. Ask again if the answer is still not clear to you. In retrospect, I wish I had been even more vocal about what I was feeling in my gut.”
Be diligent and write daily –
“Six to eight months into my illness I started keeping a journal,” Lisa said. “I kept it for 14-15 years.” She also kept a notebook in her desk at work to write down things as she remembered them. “You won’t think about or remember an anecdote of some memory about what you’re writing about the same way later,” Lisa said.
After she signed with her publisher at Camino Books, Lisa said, she set a schedule to write “from midnight to 7 a.m. then slept till about 2 p.m. to be able to spend time with my husband after work.” In 14 months she completed her book On Camera and Off: When the News Is Good and When It’s Not.
If you work 9-5 and want to write a book –
“You have to try to find two hours where you can be off to yourself, even if it’s in another room, preferably a closed off room where you wouldn’t have many distractions,” Lisa said. “You know what they say about being in the zone. It’s hard sometimes. Sometimes you just don’t feel like you can write. That’s difficult to define, finding your good time. It would be a slower process of course. But write and give yourself the time.”
When Lisa found that she couldn’t focus at home with too many distractions, she stayed at her brother’s house in Dallas, Texas last winter. “It was nice and quiet when they were at work during the day,” Lisa said. “Seclusion, isolation, and having an outline helped me get started.”
Save time to proofread –
“I didn’t realize how much proofreading is involved in writing,” Lisa said. “When I would write one day and go back the next day to write, inevitably I would change something. Don’t think that’s abnormal. In the editing process you’ll find a lot.” She plans to make changes to her memoir before the reprinting. She’d like to add more pictures and include a chapter on the power of prayer.