A Speck of Hope

“Say, kids, what time is it?”

A tinny recording of the Howdy Doody Show’s bouncy theme song bubbled from the radio in Mary Musso’s car as it crawled along the congested San Diego Freeway toward UCLA.

After a long bout with lung cancer, “Buffalo Bob” Smith was dead, a radio host announced during a brief tribute to the TV puppeteer of the 1950s. Mary heard the news on her way to see her husband, Dave, himself struggling that morning with lung cancer in the UCLA hospital intensive care unit.

Cancer seemed to be everywhere since the Mussos began a harrowing journey in 1991 through five sets of tumors that ravaged Dave’s tongue, larynx and lungs. The Northridge couple seemed to be confronted at every turn by the disease that took over their life and annually kills 565,000 Americans.

As Dave suffered during the past seven years through treatment that took chunks from both lungs and stripped him of his ability to taste, smell, swallow and--except with a mechanical voice box--speak, the couple watched several friends also sprout tumors and die.

“We’ve seen a lot of people around us go,” Mary said. Driving brought no respite, as day after day the radio reported the cancer deaths of celebrities--Smith, “Lamb Chop” ventriloquist Shari Lewis, singer Linda McCartney and comedian Corbett Monica, constant reminders of Dave’s implacable enemy.

As the 71-year-old woman weaved her white Cadillac through traffic, the grim news tolled from her speakers, drowning out the feats Mary would much rather hear about--those of Mark McGwire and Sammy Sosa.

Die-hard sports fans, the Mussos had been following all summer the two baseball sluggers’ quest to join the ranks of Babe Ruth and Roger Maris--both of them also dead of cancer.

“We’re watching history being made,” Dave once said. “It’s fantastic.”

The thrill of this season’s home run race was one of the few things the couple relished after Dave--with several new tumors in his left lung--was told in July that he had no more than nine months to live. As a last-ditch effort to extend his life, the 75-year-old agreed to take part in a cancer drug experiment at UCLA.

But the treatment wasn’t going well. Days after receiving his first dose of the new compound, Dave coughed up streams of blood from his tumor-filled lung. Though it had stopped almost immediately, the bleeding put him in intensive care, where doctors puzzled over its cause.

“All we can do is monitor him,” said Dr. Fairooz Kabbinavar, Dave’s physician.

Kabbinavar, also an oncologist at UCLA’s Jonsson Comprehensive Cancer Center, helped coordinate the five-state experiment. He was unsure where it was headed now, though.

The bleeding could mean Dave was getting worse, that a golf-ball-size tumor in his lung was gnawing deeper. Or it could actually be a good sign, an indication the drug was shrinking the tumor, tearing away its feeder blood vessels.

“It’s too soon to tell,” Kabbinavar said.

‘Maybe It’s the New Drug . . . Working’

Pale and ashen, Dave looked miserable, Mary thought as she walked through the swinging doors of the ICU that morning to see him. He looked trapped in a web of tubes and beeping machines that monitored his condition and pumped oxygen into his good lung.

Mary wore a multicolored floral print blouse and rose red lipstick, trying to look pretty for Dave, to lift his spirits. She cheerfully toted the sports pages, which showed McGwire up by four home runs over Sosa and closing fast on the Maris record of 61.

But Dave barely noticed any of these things, Mary later said. Still exhausted from the bleeding and the excitement that followed, he instead silently longed for home.

“At least the bleeding has stopped,” she said, absently clenching her fists.

However, Dave’s strength did not improve much when, days later, he was released from the hospital. Despite a frantic welcome-home licking from Nicky, their dog, he mostly slept during the next few weeks. He did not go near his favorite spot beneath the backyard orange tree or anywhere else outside.

“Gee, I’m awfully tired and weak,” Dave said to himself over and over.

Contemplating the experimental compound coursing through his veins, he also told himself, “Maybe it’s the new drug doing this. Maybe it’s working.”

The couple clung to that vague hope when they returned to the Jonsson Cancer Center in August for Dave’s second dose of the new compound.

Their involvement in the experiment, in some ways, gave them an advantage over the thousands of other cancer patients visiting the crowded center every month.

Desperate for hope, scores of those patients scramble to enroll in one of the 200 trials currently being conducted with experimental cancer treatments, said spokeswoman Kim Irwin.

Many are turned away, either because their condition does not match the needs of the experiment or because the study is already at full capacity, she said. Others who win admission find their hopes quickly dashed when their experimental treatment proves ineffective.

Recently, Irwin said, “A woman from Beverly Hills called me and she was hysterical. Her husband had just been diagnosed and she found out about this [lung cancer] experiment on the Internet.

“I gave her the phone number” of Genentech Inc., the pharmaceutical company conducting Dave’s experiment, Irwin said, “but the study is closed. They already have [the maximum number of] patients. It’s sad. There are so many people [with cancer] out there.”

The Mussos were struck by the magnitude of the disease whenever they walked into the Jonsson center, one of the largest and busiest cancer hospitals in the nation.

Since 1990, the number of patient visits there has doubled to about 3,000 visits per month, administrators said, forcing the center to operate 12 hours a day and add a second floor to its 23-bed treatment clinic.

To the sometimes off-key chords struck by Judy Smith, who regularly plays the center’s lobby piano, a parade of patients entered with the Mussos when they arrived for Dave’s next treatment.

Some, dressed to conceal their tumors or their hair loss from chemotherapy, were confined to wheelchairs or used walkers as they headed down the long hallway leading to their next treatment.

A few stopped to listen to Smith play “My Heart Will Go On,” the theme from the film “Titanic” that heralds the romance of hope in the face of insurmountable odds.

Smith, a retired pediatric nurse from Torrance, volunteers her playing time to help the patients deal with the stress of treatment.

“Sometimes they come over and sing with me,” she said. “Or we sit and cry together.”

It was all too familiar to the Mussos. “I’ve been here so often, I know this place better than some of the doctors and nurses,” Mary joked. “They don’t know some of the shortcuts I know.”

‘I Haven’t Been Out to Dinner in Five Years’

While again watching the experimental compound drip slowly into Dave’s vein, the couple briefly escaped into reminiscences of vacations they took before their lives became consumed by cancer. Recollections of Greece, Italy, Germany, Alaska and Hawaii were filled with nostalgia for the meals they had there.

As Dave described a romantic restaurant they frequented in Florence, Italy, he reveled in the memory of aromas his nose is no longer capable of detecting.

“It smelled so good in there,” he said, trying to gesticulate with his hands but unable to do so and speak with his hand-held voice box at the same time. “You could smell the onions cooking and everything. We had the best pasta there.”

In Hawaii, “I had the papaya with lime juice on it. Boy, that was so good. I ordered it every time I could.”

Mary smacked her lips, made a slurping sound and laughed.

Sitting in a courtyard later, Mary reflected sadly. “I haven’t been out to dinner in five years,” she said. Nearby, a lung cancer patient smoked a cigarette even as chemotherapy treatment dripped into her arm from a portable IV stand.

“I’m not asking for pity or anything,” Mary said, “but nobody ever pays attention to the caregiver” when cancer strikes a loved one. “They say: ‘What can I do for you? What can I do for you?’ But they never do anything. It would be nice to go out once in a while.”

Dr. David Wellisch, a cancer psychologist at UCLA, said such sentiments are common among the spouses of long-term cancer patients.

“Sometimes their stress and distress can be higher than the patient’s,” he said. “It is important to include spouses in any psychological therapy you give to cancer patients.”

Dave and Mary are not keen on receiving any kind of psychological therapy. “All they do is dredge up bad memories instead of erasing them,” Dave said with a wave of his hand.

Mary said, “We deal with it in our own way.”

One way they cope is to lose themselves in computer games. A favorite of Dave’s is called “Free Cell,” an advanced version of computer solitaire that requires prolonged concentration.

He and Mary have become masters of the game, competing against each other. “We can go for hours,” Mary said.

It was during one of those competitions a few nights after his second treatment in mid-August that Dave’s next crisis struck.

He began to cough slightly and excused himself from the game to go to the bathroom. Minutes later, Mary heard prolonged wheezing, walked into the bathroom and found Dave bent over the toilet, spewing about half a cup of blood from his breathing hole.

“Oh, dear,” she moaned.

Dave was rushed to the UCLA hospital. Again, he was placed in intensive care. And, again doctors were unsure they could stop the bleeding if it started again.

“I’m trying so hard to keep control,” Mary sobbed.

Dave, trapped in another web of machinery, remained in intensive care for 11 days.

Kabbinavar, concerned for Dave’s life, considered taking him off the experimental compound.

“This may be too dangerous for him,” he said.

He arranged for the hospital to take a CAT scan of Dave’s lung, a test originally planned for later in the 10-week experiment to determine the effectiveness of the new compound.

“We’ll know from the results whether we should continue the treatment,” the doctor said. “If the tumor shows no regression, then it’s obvious that it is not worth the risk to continue.

“If it shows dramatic shrinkage, we’ll be in uncharted waters,” he said, meaning the new treatment could be working, despite the bleeding.

‘Waiting for the Other Shoe to Drop’

On Sept. 2, after Dave had again been released from the hospital with no signs of additional bleeding, the Mussos arrived for the CAT scan.

Dave’s eyes were glassy with exhaustion. He could barely stay awake. With one lung full of clotted blood, and the other with body fluids, his breathing sounded like a shovel scraping wet cement off an asphalt road.

Mary looked at her husband and thought of Rex Ferguson, a friend of theirs. About 25 years ago, he also underwent extensive cancer treatment. One day Rex turned to Dave with a spent look on his face and said, “I wish they would just let me die.”

Shortly after, he did.

Dave wore the same expression now, Mary thought.

“I just know he’s thinking the same thing,” she said to herself. But she didn’t want to ask Dave.

For the CAT scan, Dave was placed inside the doughnut hole of a large rectangular machine that hummed loudly. He was alone in the room, which was meat-locker cold.

“Take a deep breath and try holding it for 14 seconds,” echoed the voice of a technician operating the machine from an adjoining room and speaking to Dave through an intercom.

As Dave struggled to hold air in his drowning lungs, he stared blankly through a connecting window at his wife standing near the technician. She watched him silently as the machine’s rays lighted segments of Dave’s lung and transferred the images to computer screens near her.

They showed galaxies of white blots swirling inside Dave’s lung.

“Most of that is blood vessels,” said Glen Nyborg, the technician. But “some of it is stuff that probably shouldn’t be there.”

How much of that stuff, the Mussos would not find out until the next day, when Kabbinavar examined the photos.

“I’m not sure I want to be there for that,” Mary said.

Dave walked out without a word, his breath still sounding like a shovel scraping cement. With all the disappointments he had seen, hope was a foolish luxury, he felt.

He was wrong.

Hope become a reasonable option the very next day, when Kabbinavar looked at the CAT scan results and smiled.

“This is like manna from heaven,” he said.

Dave’s largest tumor had shrunk by roughly 70%. The new compound, combined with the chemotherapy, appeared to be working.

The blood that Dave coughed up was not bad news but good. It was evidence that the tumor, deprived of the body nutrients it normally received from connecting capillaries, was breaking apart. The compound had prevented the cancer from metastasizing to other areas by blocking the formation of additional capillaries needed during that process.

Mary clapped when she heard the news. She wanted to cry, she said, but remembered Dave does not like tears. “That’s terrific,” she said.

Dave only grinned.

“I was waiting for the other shoe to drop,” he said later.

But there was no other shoe. Not really, considering how far the Mussos have come.

Dave was sure to cough up more blood after his next treatment, Kabbinavar warned. “This is still life-threatening. The treatment has not been easy on you.”

But, he added, that threat was minimal compared to the risk of stopping the treatment, which would simply allow the cancer to resume growing.

“My recommendation is that we continue with this treatment and see where it goes,” the doctor said.

“Let’s go ahead with it,” Dave answered, giving Kabbinavar the thumbs up.

Mary patted her husband’s thigh. She was giddy, chuckling at anything anybody said for the rest of the morning.

When Kabbinavar drew blood from Dave for routine tests shortly afterward and had trouble getting the amount he wanted, Mary laughed hard.

“He doesn’t have any more inside him,” she said. To her husband she said, “Stop being so stingy.”

Kabbinavar joked, “It’s like squeezing blood from a turnip.”

Mary laughed even harder, the sound pealing through the clinic.

“Now, I know what to call him,” she said. “Hey, you turnip, you.”

Dave, his breathing still labored, smiled and coughed into a tissue. He showed his wife the flecks of blood.

He was bleeding. And after years of bad news--seven years of their 38-year marriage--that was, strangely, a good sign.

At last, a sign of hope.