A Speck of Hope

“Say, kids, what time is it?”

A tinny recording of “The Howdy Doody Show’s” bouncy theme song bubbled from Mary Musso’s car radio as she inched 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 was on her way to see her husband, Dave, himself struggling 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 annually kills 565,000 Americans.

As Dave endured 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 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.

The grim news tolled from her speakers, drowning out the feats 71-year-old Mary would much rather hear about--those of Mark McGwire and Sammy Sosa.

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

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

The thrill of this season’s home-run race was one of the few things the couple still 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. Yet now he was unsure where it was headed.

The bleeding could mean Dave was getting worse, that a golf-ball-size tumor in his lung was gnawing deeper. Or it could 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. 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 Maris’ record of 61.

Dave barely noticed. Still exhausted from the bleeding and the excitement that followed, he silently longed for home.

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

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

“Gee, I’m awfully tired and weak,” Dave thought repeatedly.

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

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

Desperate for hope, scores of those patients scramble to enroll in an experimental cancer treatment trial, center spokeswoman Kim Irwin said; 200 are currently being conducted.

Many are turned away, either because their condition does not match the needs of the experiment or because the study is at full capacity, she said. Others who win admission find hopes dashed when the 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 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 tumors or hair loss from chemotherapy, used wheelchairs or used walkers to head down the long hallway to their next treatment.

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

Smith, a retired pediatric nurse from Torrance, volunteers 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.”

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

While again watching the experimental compound drip slowly into Dave’s vein, the Mussos briefly escaped into reminiscences of vacations in better days. 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, unable to gesture 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.”

“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 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 aren’t keen on psychological therapy. “All they do is dredge up bad memories instead of erasing them,” Dave said with a wave of his hand.

Added Mary: “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 Free Cell, an advanced version of 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 to go to the bathroom. Minutes later, Mary heard prolonged wheezing and found Dave bent over the toilet, spewing about half a cup of blood from his breathing hole.

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, 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,” Kabbinavar 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 concrete off an asphalt road.

Mary thought of their friend Rex Ferguson. About 25 years ago, he underwent extensive cancer treatment. One day Ferguson turned to Dave with a spent look 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.

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 window at his wife and the technician. Mary watched 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 technician Glen Nyborg. But “some of it is stuff that probably shouldn’t be there.”

How much of that stuff, the Mussos would not know Kabbinavar examined the photos the next day.

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

Dave walked out silently, his breath still labored. With all the disappointments he had seen, he felt hope was a foolish luxury.

Yet hope became a reasonable option the next day, when Kabbinavar smiled at the CAT scan results.

“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 good, not bad, news. 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. She wanted to cry, she said, but remembered Dave doesn’t like tears. “That’s terrific,” she said.

Dave 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 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 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,” she said. To Dave, she said, “Stop being so stingy.”

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

Mary laughed even harder.

“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.