That southern drawl, charm, and warmth drew me to her like a magnet. I met Lou at the 2010 Annual Meeting in Philadelphia, where she and her husband Billy (who cracks me up) gave me a big old hug. When I looked at her, I noticed she had this gorgeous decorative patch over her right eye. I opened my mouth, inserted my foot and said, “What happened to your eye?”
The day of the birth of her daughter in 1973, she noticed that the vision in her right eye was making objects appear curvy instead of straight. Subsequently, a small tumor was found in the right eye. It was monitored frequently, and by 1978, had begun growing. A biopsy, revealed the tumor to be Spindle B Melanoma, a rare and deadly form of cancer that aggressively spreads throughout her body if left unattended. The specialist recommended complete removal of the eye immediately, and Lou agreed. After removal of the eye, she began wearing a prosthesis. She currently has two benign tumors in her left eye that also cause blurry and curvy vision, but is now 32 years post cancer.
After losing the eye, there was an adjustment period in everyday life. She had no depth perception and half of her peripheral vision is gone. When walking, it was common for her run into posts, signs, and sometimes even other people. A pinball machine comes to mind — without bells and whistles. She had to learn once again how to drive safely. Not trusting what she saw in the side mirrors, she would turn her head and look instead. She has adjusted, but still occasionally walks into things.
Note to ask Lou: Did you have a bumper sticker that said, “If you don’t like the way I drive, get off the sidewalk?”
In 2005, MaryLou was diagnosed with MMP/CP by way of a biopsy of her inflamed gums. When she learned that it could spread to the eyes and result in blindness, Lou was staring her worst fear in the face; losing the sight in her one remaining eye.
Eye specialists she had been seeing did not know enough about the disease to offer any guidance.
Searching the Internet, Billy found Dr. Irving Raber at the Wills Eye Institute in Philadelphia. Upon examination, Dr. Raber saw no evidence of MMP/CP in the left eye. However, the MMP/CP had attacked the socket of her right eye, where the blistering and scarring had already forced her to discontinue wearing her prosthesis in favor of a patch. Tiring of people staring at a plain patch, she had the gumption to give them something to stare at!
Lou first began using rubber stamps on the patches, then coloring in the figure. Because of the time and effort required to color the patches and make them look good, she began using temporary tattoos instead of the stamps and coloring. This was much faster and easier, and garnered positive reaction. Smiling people often approach her for a closer look, thinking that she has tattooed her eye, and then compliment her on how good the patches look. They even laugh when an application with something funny, such as a big, moving googly-eye stares back at them.
Lou continues making patches, even though at times does not feel like doing it. Nevertheless, in the brief moment of joy seen in the faces of people who see and appreciate the patches, she finds the encouragement to continue making them. She does seasonal patches for holidays and special occasions. Oh, and they must ALL be color coordinated with whatever clothing she is wearing. (Meanwhile, I am the one walking around with a striped shirt and checkered pants!)
Not satisfied with answers or treatments by doctors that had examined and treated her; she continued her quest on the Internet. She connected with Molly Stuart at the IPPF who put her in touch with Marc Yale, a Health Peer coach. Marc also has MMP/CP. He referred her to his eye specialist in Boston, Dr. Steven Foster. In addition to her trip to Boston to see Dr. Foster, Lou felt that her trip from Mississippi to Boston would be wasted if she did not also pay a visit to Dr. Razzaque Ahmed while there.
Dr. Ahmed examined her in his office that afternoon and determined the MMP/CP to be active in all other areas of mucosal tissue that he could visually see, and at an advanced state. He described the MMP/CP in detail, including a two-year course of treatment that could put the disease into remission. Despite her initial fears of another letdown, his compassion, knowledge, and confidence made her ecstatic! Lou is currently about one year into her treatments, starting with Rituximab, and the mucosal activity initially subsided. Despite her monthly IVIG treatments, she is developing painful lesions on her chest, back, scalp, and arms. There is also evidence that the mucosal areas are beginning to flare again. Her hematologist at the University of Mississippi Cancer Institute has already begun administrating 12 more weeks of Rituximab in hopes of bringing it back under control.
In spite of this setback, she remains upbeat and determined to win her wrestling contest with the MMP/CP. It pleases her that the staff at the Cancer Institute comes to see her just to gander at what is on her patch each treatment day.
With daily fatigue and constant pain, she is overcome with a pity party a few times a year. However, Billy, her rock/hillbilly psychologist, will intervene after a day or so. Lou says of Billy, “It is not his nature to be overly affectionate, but when I need him most, he listens to me patiently, holds me and tells me that he loves me regardless of my physical condition. He says that I am still the same woman that he loved and married in 1991, and will always feel that way. Therefore, I need to turn off the tears, leave the pity party, and get on with enjoying the many good things in our lives.” After his reassurance, she is able to pull herself together, begin feeling good about herself again, and enjoy life.
Lou states, “It helps when we can focus positive energy upon getting well rather than dwelling on the negative ‘poor me.’ We must first do what we can to help ourselves, follow the guidance given to us by skilled and learned physicians, and finally look for ways to help someone else. Helping others takes your mind off your own problems, and you frequently find someone whose problems are worse than your own. If a person is willing, they can use the experience of their own ordeal to assist others with similar health problems, showing them first hand that there is hope. That is the ultimate reward in life.”
Her grandson Ryan calls her Jammaw Patches. Me? I call her special!
[box type="shadow"]Author’s Note: Lou loves the idea for children and adults who may have to wear eye patches in their own lives to mass-produce them (i.e. bandage manufacturer), but she only has two speeds – fast and stop. If any readers know people who may be able to help point her in a direction for this to happen, please email me at [email protected][/box]