Monday, December 26, 2011
this article ran in the supplement section of our newspaper on Christmas day. The writer did a nice job. She made a few minor errors like number of surgeries (more) and when certain surgeries occurred, but nothing was majorly wrong. She called out of the blue, saying she had seen my bio on the transplant registry and wanted to do a story on me, and Excy took the call and said Yes...so there we are..there are photos to accompany it, but they weren't available for the online version. The photographer was here two hours for what will probably be two shots, but at least we all had a good time, and I hope to get a new picture out of it to put out on the blog...
RIVER VALLEY and OZARK AREA — Amy Gray Light has a rare cancer - you won’t see ribbons displayed for it - but she also has a rare friend.
One willing to donate a kidney.
“I always wanted to help somebody, and I can’t imagine a better honor than me to share something with someone and know it’s going to change their life or better it in some way,” said Cathy May, 53, Light’s neighbor on Wye Mountain and future kidney donor.
It’s not a cup of sugar. A ladder. A shovel for the walk.
May makes it sound as if it’s not a big deal, although she knows it is.
If not for a crazy thing call Von Hippel-Lindau disease, or VHL, Light’s life would seem charmed.
She’s talented - she’s been a freelance writer for national publications; she’s a former model (that was a lifetime ago,” she said); and is adored by her husband - he married her after she had cancer.
Light, 53, has been dealing with this demon disease since 1984.
VHL inhibits the body’s tumor suppresser, so cancerous tumors pop up throughout her body.
She has had three brain surgeries, five kidney surgeries, a pancreatic surgery, an eye surgery and two spinal surgeries. “Twelve so far,” she said, pausing to count.
Light has only the remnant of one kidney, thus the need for a transplant.
“It’s life or death for me. If I don’t get it, I won’t live very long,” she said.
Light said 10,000 people in the United States have VHL, and only 32,000 worldwide.
“I laugh, because The New Yorker magazine had a cartoon - there was a lady in the waiting room, saying, ‘Well, my cancer’s so rare, we don’t even have a spokesperson.’ That’s kind of how I feel.”
Light first had to persuade a doctor that she had a brain tumor.
The Little Rock native was 23 and living in Washington, D.C.
“It was really kind of weird. I had just moved to D.C. and gotten my dream job,” she said.
Light was writing for an American Institute of Architects publication.
“I started to get sick, then I’d feel OK. This went on for months and months and months, and I was beginning to get frustrated,” she said.
“I went to this doctor and said, ‘OK, I’ve got a brain tumor.’”
He asked her why she thought that.
“I said, ‘I think everything going on with me is neurological — I’m walking funny, my handwriting is funny,’” and she was throwing up in his office while explaining this to him.
The doctor told her that 70 percent of his female patients were psychosomatic.
He made a deal with her — if she’d go see a psychiatrist, he’d give her a CAT scan.
So she did.
Light recalled that the psychiatrist said, “You seem welladjusted, but are you aware you’re walking sideways?”
She decided to go to the emergency room — and she vividly remembers that the movie Dark Victory with Bette Davis — about a woman with a brain tumor — was on TV.
“I turned off the TV, put on my jogging clothes and called a taxi,” she said.
The taxi driver asked if she was going jogging in the park.
“I said, ‘No, I have a brain tumor.’”
And she did.
The doctor recognized it was VHL, and she has been closely monitored and has undergone surgeries, ever since.
Light’s husband, Excy Johnston, is a retired architect, and she was his editor for the architecture magazine when they met through her job in Washington.
They married in 1991. She told him about her disorder, and he was nonplused. “My marriage counseling was with her brain surgeon,” he said, laughing. “I took her out, and that was that. She’s pretty special.” It’s a mutual admiration society. “Boy, he stepped up,” Light said. “I would not be here if it were not for Excy — he would research it; he handles the doctors. All I have to do is get well. “He’s just a blessing — he’s just been there for me.” Soon after they married, the couple decided to move closer to her family in Arkansas, and they wanted land to have horses, which is how they came to live on Wye Mountain.
Johnston started a nonprofit wild-horse sanctuary, Wing Spur, just across the road from their home.
Light worked as the public relations officer and editor of publications for Winrock International from 1991-97.
A third brain surgery in 1997 forced her to retire. She had to relearn how to walk and write, and she now drives with hand controls.
She still enjoys life; it’s just “a new normal,” she said.
Once a year, she co-facilitates grief counseling at St. Margaret’s Episcopal Church in Little Rock.
“I always feel better when I can reach out and help other people; it gets my mind off what’s going on with me,” she said.
She said two women’s groups that each meet once a month serve as a great support system for her. One is the Willows. “We’ve gotten very close. It’s a safe haven. We just share everything going on in our lives,” Light said. Light gets together with her female neighbors, too, who call themselves WOW — Women of Wye. That’s where Light met May. May and her husband, Bob, who is on the writing faculty at the University of Central Arkansas in Conway, wanted an older home to refurbish. When one deal fell through, she saw an ad for a home on Wye Mountain. They pulled up, Bob saw the barn, and he said, “I want it,” she said. May suggested they at least look inside the house. The property fits their lifestyle — they have miniature donkeys and horses, along with cats and dogs.
As they walked the road they live on, May met a neighbor who invited her to the WOW dinners.
“She said, ‘You’ll really like these women; we just get together once a month,’” May said. “We’ve all formed these really strong bonds. I just think it’s so important for women to have female friends.”
She said she recently read that women who have longterm friendships have better health as they age.
“One of the women had breast cancer. ... We’ve all been together through thick and thin,” she said.
“I knew that Amy was sick and had a rare disease, and I looked it up because I’m a very curious person, and I’m fascinated by how people deal with things,” May said.
It was about 2 1/2 years ago that Light told her WOW friends that she needed a kidney transplant.
May is on the national organ-donor registry and the bone-marrow registry.
Giving a kidney to her friend wasn’t a snap decision, though.
“I did a lot of research before I even opened my mouth,” she said.
She read a lot of articles about people who have donated a kidney.
“That allayed a lot of my fears,” she said.
“People can live with one kidney, you just have to be careful with contact sports. I’m pretty sure I’m not going to be out on the soccer field,” she said, laughing.
“Yes, I’m going to be nervous,and I’m going to be afraid, but usually, the fear is worse than the actual event.”
May didn’t get a positive reaction when she told her husband.
“Bob wasn’t real happy; my family wasn’t real happy, just because they’re afraid,” she said.
Light didn’t jump up and down when May told her the news, either.
Light had a close relative who declined to be tested as a potential donor.
“It hurt me so much,” she said, emphasizing each word. “I kept hearing stories of people who had a donor, and then the donor backed out. I said, ‘Oh, please, this is nothing to be taken lightly.’
“Cathy kept saying, ‘I feel like this is something I should do.’”
Light gave May a DVD from Emory University Hospital in Atlanta about donating a kidney, and it didn’t change May’s mind.
“She said, ‘I am not going to back out on you,’” Light said.
May said she’s just that stubborn.
“Bob knows when I set my mind to something, that’s it,” she said.
May was tested at the University of Arkansas for Medical Sciences Medical Center in Little Rock and went to Emory for two days of physical and psychological tests.
“They’re very, very thorough,” May said. “They watch out for you as much or more than they’re watching out for the recipient.”
After May had matched in almost every way, there was one more test for a urine enzyme.
She failed the test.
Light said her husband sat her down and told her it looked like the transplant was off, and she recalled how devastated May was.
“She cried more than I did,” Light said.
May asked the lab to rerun the test.
“They said, ‘It won’t matter,’” May said, but when it was retested, she was a match.
It will likely be this summer when the women go to Emory for the surgery.
Light is a patient at the National Institutes of Health in Bethesda, Md., but it lost funding, and her transplant surgeon moved to Emory.
The surgery doesn’t cost the donor anything, May said.
The recipient is a different story.
“Of course, all the WOWs were wonderful, and they rallied and started my National Foundation of Transplant, a nonprofit account for me when they learned I needed to have a certain amount of money,” Light said. “Through their initial efforts, I was able to raise $32,000.”
The cost to Light was going to be $100,000 - plus $6,000 a month out of pocket for medication - but Light learned some upsetting news last week.
She was notified that the National Institutes of Health center isn’t set up for the dialysis she’ll need as soon as the remnant of her one kidney is removed.
“If I can’t go there, it’s going to end up costing $200,000,” Light said. “We’re still waiting to hear.”
Donations can be made online at www.transplants.org by searching for Light’s name, or mailed to NFT Arkansas Kidney Fund, 5350 Poplar Ave., Suite 430, Memphis, TN 38119, with “in honor of Amy Gray Light” on the check memo line.
May said one of the questions a doctor asked her is, ‘How are you going to feel if she loses the kidney?’
“I will just feel devastated, not because of the loss of my kidney, because it will be hers, just because of what she’s going to be facing, health wise,” May said.
She brushes off the enormity of the unselfish gift.
“Every time I would look at her, knowing that she was feeling better, that’s the gift to me,” May said.
May said Light and Johnston are really good people.
“That’s part of the reason that motivated me - I really care about both of them,” May said.
“She’s my angel in a lot of ways,” Light said. “She’s a kindred spirit.”
It is not surprising to May that she and Light both found Wye Mountain and each other, and are on this journey together.
“I’m a firm believer that everything in your life happens for a reason - you may not realize what it is at the time;you may not like what it is at the time,” May said.
“It is like the greatest honor in my life to be able to do this.”