Imagine your nose itching, and even when you scratch, the irritation always returns, like a politician’s dinnertime phone pitch.
Then your back, right in a place you can’t reach.
Also your foot, right after you put on socks and lace up your shoes.
But what if your whole body is itching, every inch of skin, all day, all night? Tiny ants, thousands of them, playing soccer on your skin.
Beyond maddening. Terrifying.
Torturers would drop waterboarding in a minute if they could figure out how to use itching.
From a victim, the only “Ahhhh!” you will hear is when a scratch makes the itch go away. But the pleasure hardly outlasts the exclamation.
Then, it’s back!
People actually have been known to kill themselves over itching that wouldn’t quit. And when you hear Paul Raffer’s story, you might wonder why he didn’t.
Paul K. Raffer, M.D., was a 61-year-old neurologist in Chula Vista who reasonably assumed he knew his own body in the way a mechanic thinks he knows his car.
He had an active practice in Chula Vista, a wife, Donna, of 38 years, four grown daughters and three grandchildren. Life was bountiful.
That all began to change in the early part of 2008 when he noticed a splotchy rash on his arm. It was only about 2 inches square, so he scratched the itch and went on about his business.
As the year slid from month to month, it didn’t go away. It pretended to be an innocuous, nonspecific rash like eczema. It could have been many things. But it crept, spreading ominously, like a germ in a petri dish. By the end of the year, it had covered Raffer’s entire body. And it itched. Oh, lord, it itched. It was like poison ivy all over his body.
“It looked like I had an all-over bad sunburn. The itching is the absolute worst part. Imagine every square centimeter of your skin wanting to be scratched, and it doesn’t go away.
“My back particularly. I couldn’t stop scratching, it was embarrassing. Every door jamb was my favorite place. At 24 Hour Fitness, people gave me looks coming out of the shower. I knew what people were thinking: ‘This guy, I don’t want to be around him.’ I stopped going. It was not contagious, but who knew that? I became withdrawn. I didn’t want to be in public.
“After the skin became inflamed, it began to flake. If I took off a T-shirt, it would be like there was a snow shower. It was horrible. I lived for going into the bath. I would get into the hot water and I would scratch myself. I would leave layers of skin. It was disgusting, how it looked afterward.
“I was starting to get fevers and feeling the malaise. For the first time in my life, I was sick. I mean, really sick: nausea, lack of appetite, lack of energy. Never comfortable. I didn’t sleep. I was starting to interfere with my wife’s sleep. Sometimes we would just sleep in different rooms.”
Doesn’t sound very conducive to sex.
“There was no sex.”
The grandkids must have said, “Grandpa, you look weird.”
“Yeah, they did.”
You were the Elephant Man with a rash.
“Yeah, kind of.”
After reading every bit of research he could find, to no avail, Raffer ignored colleagues who told him he had “just a rash” and started making the rounds of dermatologists, specialists in contact dermatitis and allergy specialists. They hit him with every test and scan in their repertoire, and still they didn’t know. None of them. Nothing. That went on for a year. And the itching didn’t stop. Raffer was going nowhere except mad.
Finally, at the beginning of 2009, he got a break. Over dinner, a colleague mentioned the diagnostic skill of Dr. Doyle Hansen, a dermatologist and dermatopathologist in El Cajon. Raffer wasted no time making the call.
Hansen biopsied Raffer and sent the sample to a DNA lab for genetic testing. After evaluation, Hansen told him, “You have mycosis fungoides, and you need to go someplace where they know a little bit about this, and there’s nobody local that I would send you to.”
Hanson urged him to contact the Stanford Cancer Center, which had the foremost expert in treating his disease — an unassuming physician named Yuon Kim.
Raffer rushed home to his medical books and computer. He quickly learned that mycosis fungoides loosely means “mushroom-like fungal growths.” However, it is not a fungal infection but rather a type of non-Hodgkin lymphoma — a blood cancer that starts in the bone marrow. Traditional chemotherapy was ineffective.
The disease is incurable and fatal. It will kill you in three to five years, and Raffer’s clock was running. The disease affects “only” 1,000 Americans each year, and that heightened his “Why me?” dejection.
The sound of the word “incurable” reverberated in his brain, like the drawn-out bong of a church bell.
As a physician, he didn’t deal in medical unrealities. He knew he would die unless Yuon Kim and her colleagues could save him.
Knowing the name of his tormentor did not make him itch less. Raffer was nearing the end of his perseverance. “I’m thinking: Live for years with this itching? I’m not gonna. That’s not gonna be my life.”
“I would probably off myself if it was going to be like that ...” He pauses and reflects. “I don’t think I ... I shouldn’t say that. There’s a lot to live for.”
But you did say it.
“I did say it. It certainly crossed my mind. When I got up there (to Stanford), I knew I had cancer. And as a doctor, I took care of cancer. I saw all of those horrible things — metastatic lung cancer to the brain, spinal-cord stuff, incurable stuff. I also thought about being dead, 6 feet underground.
“Dr. Kim said to me, ‘You have stage-four disease,’ and I said, ‘Oh my God, stage four. That means I’m going to die.’ She said, ‘We’re doing an experimental stem cell transplant program that may be a cure for this disease, but we have to get you there first.’ ”
That meant an extensive, months-long round of radiation and chemotherapy. Fortunately, he had sold his practice and had ample insurance. Still, being treated was not a job he would apply for. He tried to be patient, just as the rash and itch remained patient.
“Luckily, I was happily married and had a loving wife.”
I’m sure that had its moments.
“Well, yeah, it did.”
He also learned that he had a rare breed of mycosis fungoides that also threw leukemia into the package with lymphoma. Oh, great. Two cancers. “Kind of like having lice and fleas,” Raffer says.
He underwent 18 months of treatment from 2009 through 2010, mainly in San Diego, that included intense chemotherapy. In the process, his weight dropped to 145 pounds from his normal 200 on his 5-foot-9 frame. “I had sticks for legs,” he says. “It was horrible,” he says of the treatment’s aftereffects.
All that time, the rash and the itching hung on like shoe-sole gum.
Finally, in December 2010, his blood count reached a level where Stanford doctors gave the go-ahead for the stem cell transplant.
Fifty-five hundred miles away in Hamburg, Germany, lived a woman named Tanja Offner, 36, who would save Raffer’s life. Her stem cells were on record from another donation she had made and were compatible with his needs. Their families would later become friends.
In January 2011, when Kim’s team considered him ready, Raffer’s first step was multiple total-body radiations where every square inch of skin was zapped.
In February, he was admitted to Stanford hospital to be injected with globulin made from rabbits, and to receive deep lymphatic radiation. That radiation treatment destroyed his bone marrow so the transfused cells from his German donor could move in and eventually make normal blood.
“After the lymphatic radiation, I had barely enough white blood cells to fight infections, so I wore a filtration mask whenever I went out, which was basically confined to going to and from the clinic.”
Finally, Offner’s stem cells were harvested and sent overnight from Germany to Stanford, where they were transfused into Raffer.
Side effects of the transplant included painful bursitis, severe weakness, loss of balance, tremors and damage to nerves, all of which gradually disappeared. Raffer couldn’t walk half a block for four weeks, and were he to fall, he wasn’t sure he get up.
By six months, in July 2011, he was about 50 percent normal. At the beginning of 2012, Stanford Cancer Center pronounced him a “molecular cure.”
He’d settle for that.
Raffer has written a fictional account of his travail titled “Skin,” available on Amazon. He says a few names have been changed, but the misery is intact.
Today, restored to health and clear skin that doesn’t itch, Raffer is practicing medicine part time. In treating patients, giving sympathy comes easy, especially to those with perplexing and tormenting diseases. If he says, “I understand,” it’s not just courtesy.
He really means it.
Fred Dickey’s home page is freddickey.net