Candle lit for you Graymatter.
Posted on 02/14/2006 2:16:33 PM PST by Calpernia
SEATTLE — What looks like peach fuzz has replaced the brown and gray hair that once distinguished the crown of Win Rockefeller’s head.
He’s had a bone marrow transplant, a procedure in which a patient’s marrow is replaced with healthy marrow for the purpose of thwarting what could otherwise be a fatal disease.
Now he’s waiting to do it a second time. The first hasn’t worked.
Arkansas’ lieutenant governor, a wealthy businessman who last year withdrew as a prospective candidate for governor of Arkansas, now is concentrating on staying alive.
1 In a 3 / 2 hour interview with the Arkansas Democrat-Gazette on Jan. 23, he presented a mixed picture. On one hand, the 6-footer’s weight had dipped from 210 pounds to about 175 ; his hands shook at times, a cause of mild frustration ; he had the pallor of a man conscientiously avoiding sunburn ; there was a hollowness about his eyes. But his spirits were good, decidedly upbeat. Glad that the medicines had made the pounds melt away, he was hoping to keep his weight in the 175-180 range ; he’d been exercising, feeling pretty good, had a cheerful outlook, and all the signs seemed positive.
Then came last week’s bad news : Something had gone awry. Doctors were trying to figure it out. One thing was clear : Another transplant must be done.
YEAR OF CHANGE Over the past year, Rockefeller’s life has been turned on its head. Last Feb. 24, he declared he would run for the Republican Party nomination for governor.
Within two months, he was diagnosed with an unclassified myeloproliferative disorder. That’s a disease of the blood system resulting in an overproduction of certain bone marrow cells, said Dr. Marc Stewart, medical director where Rockefeller’s under treatment in Seattle.
The condition sometimes is a forerunner to leukemia.
For his transplant, Rockefeller selected the Seattle Cancer Care Alliance. That’s a consortium of three Seattle facilities — the University of Washington Medical Center, the Fred Hutchinson Cancer Research Center, and Children’s Hospital and Regional Medical Center.
“I have told them... that one of my objectives is to be one of the most boring patients they have ever had,” Rockefeller said.
He picked the Seattle center because it has 30 years’ experience with bone marrow transplants and a reputation for the kind of transplant he needed. The program bills itself as the world’s most experienced and one of the world’s largest. Stewart said it’s involved with more than 400 transplants a year.
The kind of malady Rockefell- er has is incurable without a bone marrow transplant, according to the alliance.
The survival rate depends on factors unique to each patient, such as his general health and how resistant his disease is to treatment before the transplant, Stewart said.
In April, when Rockefeller’s doctor at the Arkansas Cancer Research Center at the University of Arkansas for Medical Sciences gave him the diagnosis, that chilling news was “a jolt,” Rockefeller said.
On July 19, he stunned Arkansans by announcing he was quitting the governor’s race to tend to his health.
For his first transplant, he spent 23 days at the University of Washington Medical Center hospital in Seattle and more than three months as an outpatient at the Seattle Cancer Care Alliance.
Thirteen days ago, his assessment of his situation was that he was “as good as or better than I have ever been, except for the minor details [to be ] worked out.”
His aim is to handle his situation in a fashion that helps other people understand that unclassified myeloproliferative disorder “is not a death sentence automatically,” Rockefeller said.
‘THE BIG C’ Rockefeller, 57, is a multimillionaire — Forbes magazine estimates he’s worth $ 1. 2 billion, an estimate he disputes. He’s a member of one of America’s most moneyed families, a great grandson of John D. Rockefeller, founder of Standard Oil. Several Rockefellers have faced cancer. His father, Winthrop, governor of Arkansas in 1967-71, died in 1973 of pancreatic cancer. Rockefeller’s attitude is philosophical. “For a lot of people, if it can be caught early enough, you don’t even have to think about the idea that ‘Oh, he got the Big C. He is going to die, ’” he said. A bone marrow transplant was not the first course of treatment. After his problems surfaced, he initially was given medications. Later, he was given occasional blood transfusions. But in June he became dependent on them, he said, which was not good. He consulted doctors at the Mayo Clinic in Minnesota and UAMS in Little Rock. “We all sort of went, ‘ No, this is not going to work, ’” he said. “The options were pretty clear cut.” He was advised that he could either undergo a bone marrow transplant or face the prospect of death within 18 months. He chose the transplant and announced his withdrawal from the governor’s race.
BONE MARROW Bone marrow is a soft tissue that is found in the cavities of bones and in which blood cells are produced. Without healthy bone marrow, the body can’t make the blood cells that are needed to carry oxygen, fight infection and prevent bleeding.
In a transplant, bone marrow stem cells from a donor are placed in a bag attached to a tube that goes into a vein of the recipient so that the cells can enter his blood. It’s similar to a blood transfusion.
The stem cells used in a transplant are adult cells derived from an adult’s circulating blood, said Dean Forbes, a spokesman for the Seattle alliance. Embryonic stem cells are harvested from embryos and are not used in this treatment, Forbes said.
A patient is prepared for a transplant by receiving high doses of chemotherapy and / or radiation therapy, the National Marrow Donor Program’s Web site says. This is to destroy the patient’s existing marrow, which will be replaced by marrow he receives in the transplant. Additional drugs are given after the transplant to inhibit his immune system so it won’t attack the new stem cells.
The infusion of the stem cells can take from one to five hours, the program says.
Once in the recipient’s blood, the cells find their way into his bones. There they will grow to form new bone marrow and produce new red blood cells, white blood cells and platelets.
THE PERFECT MATCH To minimize potential side effects, doctors try to use stem cells that closely match the patient’s own. People have different sets of proteins — called human leukocyte-associated antigens — on the surface of their cells. They’re identified by a special blood test. The success of the transplant usually depends partly on how closely the antigens of stem cells of the donor and the recipient match. The higher the number of matching antigens, the greater the chance that the patient’s body will accept the donor’s stem cells. In general, patients are less likely to develop a complication known as graft-versus-host disease if the stem cells closely match. Graft-versus-host occurs when white blood cells from the donor attack normal tissues in the patient. The most commonly attacked organs are the skin, liver and intestines.
Close relatives, particularly brothers and sisters, are more likely than unrelated people to be complete matches. But only 25 percent to 35 percent of patients from average-size families have a matched sibling, the program said.
The chance is about 50 percent that closely matching stem cells may be obtained from an donor who is not a relative of the recipient. Among unrelated donors, the prospects of a match are greatly improved when the donor and the recipient have the same ethnic and racial background.
For Rockefeller’s first transplant, it took nearly two months to find what he termed the “perfect match.”
THE TRANSPLANT Rockefeller went to the hospital on Sept. 28. “In the week before the transplant they put the most toxic stuff into you that they can put into you without killing you or destroying your systems,” Rockefeller said. “They are trying to put the right drugs into you to absolutely destroy your immune system to get you ready for the transplant.” He wasn’t particularly alarmed as the moment of transplant drew near, though at one point “I was a little anxious” after learning that “the first guy” in the intensive care unit had died.
Rockefeller’s transplant began “at two minutes after midnight” on Oct. 7, he said.
He was in a bed in a private room in the intensive care unit. His wife, Lisenne, and a nurse were there. The nurse hooked a bag of blood stem cells to a vein at the base of his neck.
“Just another IV, except this was my life,” Rockefeller said.
“And I said, ‘ God, this is in your hands, and there’s nothing more I can do now, so I’m going to leave this in your hands, ’” Rockefeller said. “And I just went to sleep.”
He got a full night’s rest, “and everybody else was up to 3 a. m.,” he said.
In his three weeks in the hospital, he was never lonely. Somebody was in his room every 15 minutes, he said. Hospital officials had told him beforehand that they hoped he wouldn’t expect to be treated any differently from other patients. He assured them he didn’t. Everybody, they said, gets the same quality of care.
When his stay in the hospital neared its end, he started wearing Hawaiian shirts of bright red and white. “I was just trying to look like I was here to live, not die,” he said. “I wanted to add some color and look like I am coming out of here and I am in great shape.”
HAIR LOSS The chemotherapy procedures caused his hair to fall out. One day Lisenne put her hand to his head. Her fingers came away with a tuft of his hair. When his children visited him during a school break sometime before Thanksgiving, Rockefeller let them clip off most of the hair left on his head. “Instead of looking like I was molting or had the mange, I just let them have a little fun with it, knowing I could trim it if I needed to,” he said. Medical articles about the transplant process say hair usually regrows in a few months. A brush with death can make a man think of things he’s failed to do. Rockefeller remembered promises he’d made to Lisenne but hadn’t kept. Example : 22 years ago they cut short by a day their honeymoon and never got to Versailles, France. They’ll visit Versailles “when we get our world at home organized again,” he said.
He also plans to make good his promise to her during his 2002 political campaign to get rid of the mustache. Though it went away because of his medical treatments, he doesn’t plan to bring it back.
“As it became more bristly, it was not a pleasant experience [for her ],” he said. “She basically put her whole life on hold for me this whole time frame, and that’s one thing I can do.” WALKING MAN Rockefeller said his doctors want him to walk because fitness is vital to any patient’s recovery. It’s an exercise that he can do and that he enjoys. He has taken to it. Exercise is “something some people think is a luxury, but in this case it’s a necessity for my health,” Rockefeller said. Immediately before the interview with this newspaper, Rockefeller took a brisk walk under gray skies with the temperature about 50 degrees in his Seattle neighborhood. “If you don’t walk, you are going to be stuck in [the hospital ],” he said. “So you have two choices. Either you are going to stay here and be plugged up and miserable and just deteriorate, or get up and walk and get out of here.” While at the hospital, he
fre-1 quently walked 2 / 2 miles a day.
Like the rest of us, even a Rockefeller can get cranky and out-of-sorts amid illness. When at times he wanted to neglect eating and lay off the exercise, his wife had to be tough with him, he said.
For the well-being of her husband, she embraced the role along with the nickname the nurses bestowed on her : The Taskmaster.
Rockefeller also remembered a walking companion — a woman in her mid-20 s who also had undergone a bone marrow transplant. Her room was a few doors down from his. After he had moved out of the hospital into a leased house in Seattle, he learned that she had died. He reflected on disparate fates, saying he has been “truly blessed.”
“There were a couple of days in the hospital that were less pleasant than others, but nothing unsufferable,” he said.
In the interview, Rockefeller said he works out six times a week, three of them at a Seattle gym where he lifts weights. On the other occasions, he does stretching exercises to keep himself limber.
He ’’ s become a walker. But not a runner. He hates running.
When outside on his treks, he’s wrapped in long-sleeved protective clothing to block the sun’s rays. Because extensive exposure to bright sunlight can bring about graft-versus-host disease, he must wear sunscreen anytime he’s going to be outdoors for a while, said his wife, who sat in on the interview. He said he is using the highest-rated SPF he can find. Seattle’s rainy weather “has not been really conducive to taking rays.”
THE MEDS His current medicines include 10 prescription drugs, including prednisone, immune suppressors and anti-viral, anti-bacterial and anti-fungal drugs. For him, the side effects have been mild. Some of the drugs cause seizures and blackouts for some patients, he said. It irritates him, though, that his left hand — the dominant one — now shakes when he writes his name, a side effect of medicine.
Because of the drugs, he’s barred from driving. His wife is at the wheel when they get about in Seattle.
Even before last week’s bad news, he was restricted to being within 30 minutes of the hospital.
Lately, he and Lisenne and 16-year-old son Collin have been staying in a leased, 4, 300-squarefoot brick townhouse several miles east of the Space Needle. The house is one mile from the cancer center.
His contacts with the center have been frequent. He returns twice a week to have blood drawn. He meets with his doctors once a week. He meets with nutritionists every few weeks.
He said he must take care to protect himself, even from the common cold. Until it adapts to its new body, a newly transplanted immune system can leave the patient more susceptible to sickness — hence the anti-viral, anti-bacterial and anti-fungal medicines.
He still shakes people’s hands, but he talked as though he might give up the custom or do it wearing gloves.
“People are just going to have to understand that I have one of two options. I can either wear gloves when I shake hands with you or use a lot of hand sanitizing,” Rockefeller said. “It’s not a question of me saying ‘I don’t trust you or I don’t feel well about your condition of cleanliness.’ It’s just a matter for my protection, my well-being, for the rest of my life. I have to watch it.”
He used to puff 15 cigarettes a day. He quit. “Why do anything to make things more difficult ?” he asked. His private insurance covered the cost, which he was told would be $ 500, 000, he said.
COMING BACK Rockefeller said in the interview that he would like to return to Arkansas by March 1, if his doctors said OK. Last week’s bad news means that’s not likely. The aim is to have the second transplant within a month. After a transplant, a patient usually has to wait about 100 days before doctors give the OK to go home, Stewart said. Rockefeller was past 100 days when he got the bad news that the first transplant hadn’t turned out well.
He said he’ll return to his lieutenant governor duties when his doctors clear him for it. Rockefeller’s staff has been taking care of the office’s business, Rockefeller aide Doyle Webb said.
A special legislative session on education may be called by Gov. Mike Huckabee later this year. If it is, Rockefeller plans to participate, provided his doctors allow him to. It’s the lieutenant governor’s job to preside over the state Senate.
Asked in the interview if he had any regrets about leaving the governor’s race, Rockefeller said, “Let’s see. Regrets ? Go through the race and be dead in 18 months ? Come out here and live a long life ? No, I can’t think of any right now.”
He doesn’t know whether there may be a candidacy in his future. “I am not really giving the whole issue of politics per se another thought. This [his health ] is my job right now. This is the job I am going to do.”
Hmmmm, well, only if Chuck Norris allows it.
Thanks Cal, I wish him well! BTW glancing at the headline, I thought there was a "contract" out on Jay Rockefeller.
"My job is to stay alive"
Don't go hunting with Cheney!
LOL! I thought the same thing when I checked my news alerts.
Sending prayers his way.
Hope the next transplant takes.
What a horrible ordeal for anyone to endure.
[...Win Rockefeller’s head.]
Is this some sort of contest?
I am in a fight, too, so I feel for him. Fatal disease, it's such a leveler. And if you can't buy survival, maybe you can distill a little insight, dearly bought. I try to. :)
I'll say a prayer for him tonight.
Yes it is and by the way, no there isn't a tunnel with a bright light at the end of it I have found....
Is this the guy that built Winrock shopping center in Albuquerque? Loved that place when I was a kid.
Oh I know! I've had enough dental anesthesia to notice that. When you're not "there"---you're nowhere. It's frightening. :(
(Ok, I don't expect to be in Heaven when I'm under sodium pentathol but dammit I should be somewhere. )
May not have been Heaven but sure felt like it to me. Only time in my life I didn't hurt.
Uh-oh...only time in my life I wasn't, well, somewhere. For a lucid dreamer, not remembering "unconsciousness" is pretty disturbing. :(
Prayers raised for the healing of this good man.
Candle lit for you Graymatter.
Thanks, hon. I've still got a youngun to raise, so that keeps me hanging on. Plus the dead always vote Democratic. Have to fight it as long as possible. :)
Ok, I will make you one of my regular candles and not just a special prayer :)
::hugs::
*ping*
Mentioning AR Lt Gov Win Rockefeller earlier, this article gives an idea of the ordeal he's been facing with his health as of late. Prayers for him that he makes a full recovery.
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