Recently by Lucy Richardson

By Sophia E.

Oh, does the aroma of freshly-brewed coffee smell good in the morning -- even if I cough and sneeze while drinking it. The coughing and sneezing are a small price to pay for having what, for me, is the perfect welcome to a new day. And, I surely did miss it during those endless months of recuperation.
I consider myself an optimist -- maybe as that famous song from South Pacific says, "A Cockeyed Optimist." Nonetheless, it took me a long time to say the words "I have chordoma disease."  
I guess because I have always refused to consider this disease a major part of my identity, and although it is a definite part of my physical being, it is not the core part of my psyche.
That's not to say that I'm unrealistic. I just prefer to compartmentalize that aspect of my life and put that bundle of worries somewhere "over there" while I live as best I can. Of course, sporadic moments remind me each day of my post-surgical deficits and that this disease and I are inextricably intertwined.
Those moments include setting aside the necessary time each morning (after coffee) to do the mouth, lip, tongue and stretching exercises to keep my speech and eating mechanisms more facile.
Looking back at the events that brought me to MD Anderson compels me to relive some painful, poignant memories. But I'm writing these words in hope that my story can, in some small way, provide inspiration for others.
Almost overlooked
Shortly after my dear husband died in 1999, despite the grief of being a widow after 40 years of marriage, I felt very well physically and was sustained emotionally by the ongoing care and concern of a loving family and wonderful friends. Having three darling grandchildren younger than 5 helped to ease the sadness and sense of loss and to salve my lonely spirit.
Then, one day, I experienced some tongue numbness and a minor speech problem that several physicians attributed to food allergies. With my usual cavalier approach, I thought, "this shall pass."
But the symptoms persisted and a friend suggested that I have a consultation. I soon realized that one can't keep ignoring medical symptoms and one must get a consultation if a problem isn't solved.
That consultation with an ear, nose and throat specialist saved my life. Speaking in a hushed, concerned voice he said, "You have a tumor and need a biopsy."
I was stunned.
He then wisely said, "You will have to fight this battle to win the war."
I quickly became aware that many challenges lay ahead. In the past 12 years I underwent two several hour-long surgeries, six weeks of proton therapy and stereotactic CT radiation. I have had tracheotomies, feeding tubes, ventilators, re-sections and grafts. (One would think, with all that, someone might have managed to give me a face-lift, too!)
In between all that, I managed to work as a consultant, travel with grandchildren to far-away places, enjoy the companionship of another man, entertain, sing again (surprisingly, my voice was unaffected by all this), and continue to compartmentalize the medical part of my life.
Holistic caring
If I had my druthers, I'd rather not have had to deal with all this but, I do. I keep in the forefront of my mind how fortunate I am to be a patient at MD Anderson, where leading experts in treating this disease offer such promising treatment options administered consistently within a truly holistic, caring environment.  
How many patients can boast of a solid team of experts who instill not only confidence in their abilities but have on their teams assistants who provide sustaining, attentive care whenever you need to hear a soothing, comforting voice?  
It's hard to explain to friends who have not had my experience how one can remain positive, even as a cancer patient. They look at me in amazement when I describe the many smiling, upbeat faces throughout the medical complex that exude a palpable feeling of hope toward the future.
How remiss it would be if I didn't pay tribute to the Jewish chaplaincy service. Their kindly visits to waiting rooms and hospital bedsides bearing homemade goodies, Sabbath candles and challah added that family touch for those of us from another city.
And how marvelous it is to rely on the awe-inspiring  volunteer organization, Houston Ground Angels,  who provide free airport service in cars driven by friendly volunteers and fly in those from afar who are in need of air travel arrangements.   
So, when you are drinking that morning cup or coffee ( or tea), think of me, who, at the ripe age of 75   believes that living life as best you can is a beautiful gift for which to be thankful.
Post 2
After chordoma
Obviously, a sense of humor has helped during the years as I had to learn to live with several residual handicaps after chordoma surgeries and radiation treatments -- accommodations for which are listed in the following litany, some of which may be helpful to others.
When dining with other people, try not to chew and speak at the same time (it's not polite, anyway). Spitting, coughing, choking and sneezing does not make for an attractive meal partner.
Order food that is moist and slides down easily, and sip liquids when swallowing. Fish, sauces, mashed potatoes, applesauce and thick soups work well. Experiment to find other choices.
Save the bagels, rolls, steak and thick corned beef sandwiches for home when you can cut them into small pieces and take two hours or more to eat. One gets tired of having everyone else's plates cleared while you're still eating and wind up leaving half of your food or taking it home.
Remember to do those throat, lip and tongue stretching exercises two to three times daily. They do help your smile.
Drink liquids frequently and suck on sugar-free candies to keep your mouth moist.
Stay away from alcohol and citrus drinks, as they can irritate and dry the throat. Socially, I still drink wine but drink water in between each sip.
And practice those beginning, middle and final speech sounds if people have trouble understanding some words, especially when you speak quickly. I do public speaking and have to remember to slow down. It's also frustrating when I have to repeat my name a few times, especially over the phone.
Most important, embrace each moment of your life with outstretched arms.
We owe it to ourselves and to life itself to not let each moment pass without laughter, love and friendship.  
I, too, have to work at all these things.

Meet Michelle Mahar - Kasten.

In 2006, while pregnant with her son, Michelle Mahar - Kasten knew something was wrong. She began to have worsening discomfort in her hip and numbness in her leg and foot.

She was eventually diagnosed with an osteosarcoma.

Because the cancer was so aggressive and the chance of recurrence so high, her oncologist suggested she seek treatment at MD Anderson.

Within a month, Mahar - Kasten was living in Houston with her family, including her mother and in-laws. "We made fighting cancer our number one job," she says.

After nine months, Mahar - Kasten completed chemotherapy and surgery to remove the tumor in her pelvis and spinal column. Then she had to learn to walk again.

"Surgery left me with limitations and pain for the rest of my life. But it's the reason I'm here," she says.

"I made the choice to fight to survive. I told my family I wasn't going anywhere, and I believed it," she says.

Continue reading Attitude of Gratitude: Two Patients Reflect on Their Cancer Journeys .

Tim Shiery was diagnosed with melanoma in 2005, at the age of 47. "I had a black mole on the back of my neck that could no longer be hidden with a band aid," Shiery says.

After a visit to the family physician, Shiery was referred to MD Anderson.

Under the care of surgeon Jeffrey Lee, M.D., and oncologist Patrick Hwu, M.D., he underwent a successful surgery and five rounds of interferon.

But two years later, the cancer was back. This time it was stage IV metastatic melanoma, which had spread to his brain and lungs.

After another surgery to remove the spots, Shiery was hopeful that he would once again be cancer free.

He was wrong.

A few more spots appeared on his liver, skin and bones.

Continue reading Tim's Triumph With Metastatic Melanoma.

Imagine flying from out of state to MD Anderson for treatment every week, paying thousands of dollars a year on plane tickets, hotel bills and ground transportation. 

Needless to say, it adds up quickly.

The Houston Ground Angels is a network of volunteers who donate their time to help provide patients in need free transportation to and from their health care facility.

All you have to do is ask, and a friendly face will be waiting at the airport ready to drive you to your next clinic visit.

In the past 10 years, with more than 6,800 missions completed (with patients traveling from 42 states), they've provided assistance to many.

Continue reading Ground Angels' Drive to Help Patients Pays Off.

Harry Moore, an 84-year-old leukemia patient, never thought he would get remarried after his wife of 66 years passed away two years ago. He'd finally accepted the fact he would be alone. "I had decided I'd spend the rest of my life alone. I didn't want anybody else," Moore says.

Marie Hazel Hargis, 71, had lost her husband only a year before she attended the Champion Employee Retiree Luncheon on Oct. 19, 2011.

Even though Harry and Marie's husband had worked together for 30 years, and the two couples attended the same church, they'd never met.

Fate brought them to the same table that day, as they sat next to each other and talked during the entire meal. "I love him very much. It was love at first sight," Marie says.

Too soon for sparks
But the love wasn't welcome in her heart -- not yet, anyway. She was still dealing with the loss of her beloved husband. When sparks flew between her and Harry, she knew she needed to get out of there, fast.

A few days passed and Marie received a Children's Art Project card, with a red flower on the front, from Harry. He told her how much he enjoyed meeting her and learning about her life with her husband, his former co-worker.

Continue reading When Harry Met Marie.

Deciding to get the human papillomavirus (HPV) vaccine was a no-brainer for me. I heard about it on the news and when I did my research, I found the benefits far outweighed the risks.

I was 19 years old and finishing my senior year of high school. I remember talking about it with my girlfriends at lunch. To my surprise, not everyone was in favor of the vaccine.

One friend in particular was not shy to voice her negative opinion. She said she'd discussed the vaccine with her parents, and that they'd heard from friends that it caused mental retardation.

"Both my doctor and my parents feel strongly about the vaccine's benefits," I responded.

It was hard for me to imagine this alleged harmful effect when I listened to my parents and physician, and had done a lot of research on my own.

Vaccine benefits
The consensus in the scientific literature was that the vaccine prevents cervical cancer. Each day in America, 30 women are diagnosed with the disease.

The HPV vaccine helps protect against two types of HPV that cause about 75% of cervical cancer cases.

Continue reading Putting My Guard Up.

This is one story in a continuing series of profiles on unsung heroes at MD Anderson -- people who do extraordinary things in the service of patients, their families or colleagues.

Meet Sam Short, a senior administrative assistant for Anderson Network in the Department of Volunteer Services. When she is not moderating the Cancer Survivor Message Board or updating membership services, she is busy connecting cancer patients and caregivers on the Patient and Caregiver Support Line. 

Here, patients and caregivers are matched with survivors and caregivers who have similar cancer diagnoses and treatments, regardless of where they were treated.

"I enjoy the opportunity to make a positive difference in the lives of patients and caregivers during a difficult time," Short says. "Patients and caregivers need to know they are not alone in this cancer journey."



The Patient and Caregiver Support Line will celebrate its 25th anniversary in October. The program has made more than 25,000 matches since it was established in 1986.

To become a telephone support volunteer or to be connected with another survivor or caregiver, call 800-345-6324 or 713-792-2553, or contact Anderson Network.

In September 2008, Hurricane Ike hit the coast of Galveston and through the medical center, with winds up to 110 mph. MD Anderson was closed for business from Thursday to Sunday and housed 1,842 employees and around 500 patients.

The National Oceanic and Atmospheric Administration (NOAA) recently raised its forecast for the season, predicting the 2011 Atlantic hurricane season will produce 14-19 named storms, 7 to 10 of which will become hurricanes.

Hurricane season is from June 1 to Nov. 30. And, although Texas needs the rain, hurricane damage, on average, accounts for $5.1 billion and 20 deaths per year. (NOAA)

Who remains at MD Anderson during a hurricane?
When a hurricane is approaching the Texas Gulf Coast, MD Anderson staff is busy ensuring that our patients, visitors and employees are as safe as possible.

Emergencies at MD Anderson are prioritized based on the severity of an event and its effect on the health and safety of the people throughout our institution. If a hurricane makes landfall in the Houston/Galveston area, we call in our hurricane ride-out team members to maintain operations of the institution.

The ride-out team is a group of MD Anderson employees who remain on campus during the storm to provide essential patient care. These vital roles include physicians, nurses, pharmacists and dining services personnel to prepare meals.

Continue reading Hurricane Preparedness at MD Anderson.

This is one story in a continuing series of profiles on unsung heroes at MD Anderson -- people who do extraordinary things in the service of patients, their families or colleagues.

Helping patients look good and feel better
A hero is often defined as a person of distinguished courage or ability, admired for his or her brave deeds and noble qualities. At MD Anderson, there are heroes around every corner. They're not just in white coats and scrubs. They're often behind the scenes making a difference in the everyday lives of our patients and their families.

Meet Maritza Valero. She began her journey at MD Anderson six years ago. With a degree in dentistry, Maritza's six-month volunteer position unexpectedly redirected her career path. She's now a supervisor in the Appearances shop in Mays Clinic. Appearances offers breast forms, bras and other specialty items for cancer patients.

"I help patients as they go through treatment and cope with the side effects of chemotherapy. I provide them with the right prostheses and bras and teach them how to wrap their scarves and turbans," Valero says. "I help them look good. When you look good, you feel better about yourself."

MD Anderson is partnering with the Von Hippel Lindau (VHL) Family Alliance to host the 2011 VHL national meeting on June 18 at MD Anderson's Dan L. Duncan Building.

The meeting is open to patients, family members and health care providers involved in the treatment of Von Hippel Lindau disease. Experts from the National Institutes of Health, MD Anderson and around the country will discuss recent advances in VHL therapy. Attendees are encouraged to arrive the night before so that they can meet the speakers in an informal setting.

Von Hippel Lindau disease is an inherited mutation of the VHL gene, which causes tumors to form in areas of the body that contain large numbers of blood vessels. VHL affects one in every 32,000 children born in the United States.

A mutation of the VHL gene can affect several organs of the body and can be expressed differently in every patient and every family.

It's crucial that patients and families living with Von Hippel Lindau disease have their care coordinated by a team of doctors and counselors with expertise in the various aspects of their care. Proper genetic testing, appropriate screening and appropriately timed therapies are all important aspects of any treatment plan for VHL.

Continue reading Von Hippel Lindau Patients and Families Unite in Houston.