California soccer mom in tough match with meso

April 7, 2008

Gloria Serrins is a 54 year-old mother of three beautiful daughters who lives in Mission Viejo with her husband, Phil, to whom she has been married for 31 years. Outgoing, vivacious, and completely dedicated to her family, Gloria now finds herself in a scenario that on one could have predicted.

In July, 2007 Gloria realized that something was wrong with her health. Vigorous, athletic, and normally full of energy, she could feel that something was out of synch, but didn’t know what it was. At first Gloria thought it might be the flu, but that didn’t explain the constant discomfort she felt whenever she was seated.

The discomfort caused her to fidget, and ultimately to have problems sleeping. Since Gloria always slept on her right side, it was too painful to lie down.

Trouble in paradise

Gloria and Phil were approaching their 31st wedding anniversary and he had set up a cruise to Alaska. Normally engaged and excited to be doing things with “the love of her life,” Gloria simply couldn’t muster any excitement about being away from home. The trip was extremely important to Phil so that they could celebrate their marriage, and also because Phil’s father had died at an early age after a lifetime of hard work. “I made up my mind early on that I’d take those extra minutes, hours, and days to be with my family. I miss my father every single day, and vowed that the only thing we really have in life—time—I would share with Gloria and the girls.”

Phil Serrins adores his wife, and he had sacrificed an 80-hour week career track to lead a lifestyle that would let him be there for them. Whether it was the school play, a family weekend trip, or traveling for soccer games, Phil and Gloria pulled together for thirty-one years, always in the same direction, always with the same goals in mind, always bound together by love.

Gloria vowed not to say anything to Phil about the pain because she knew that if he had any inkling, he would cancel the cruise and have her in front of a doctor immediately. The cruise was terrible, with Gloria’s discomfort descending into misery, compounded by an inability to sleep more than a couple of hours each night. Gloria was still afraid to say anything because Phil had developed a pain in his right eye during the trip and she was petrified that they would both be sick at the same time. Unable to withstand the pain any longer, she told Phil when they returned to California, after having endured almost unbearable pain and sleep deprivation on an ocean-bound cruise.

Web detective

Just as she had known he would, Phil whisked Gloria to St. Joseph’s, where a CT scan, MRI, and x-ray revealed spots on her lung. Dr. Brian Palafox was unable to conclusively diagnose, so Phil took charge. He got on the Internet and began consulting with doctors who he knew through his chiropractic practice.

Dr. Palafox affirmed that the only way to get a conclusive diagnosis was via a tissue biopsy. On Oct. 15 Gloria went in for surgery and, and the surgeon performed the biopsy and a talc pleurodesis. Subsequent immunohistochemical staining confirmed mesothelioma, biphasic type. When the Serrins learned that the oncologist recommended by Dr. Palafox only saw one mesothelioma case per year, they decided to continue looking.

Gloria was diagnosed with bi-phasic pleural mesothelioma on October 16, 2007.

Following her diagnosis, Gloria consulted with Dr. Cameron in Los Angeles, and Dr. Rusch and Dr. Pass in New York. All three surgeons determined that Gloria as not a candidate for surgery because of the cell type and advanced stage of her disease. Gloria began treating with one of the nation’s leading medical oncologists, Dr. Vogelzang at the Nevada Caner Institute in Las Vegas.

Despite an aggressive and arduous regimen of chemotherapy, Gloria consulted with Dr. Cameron again after her doctors determined that the Alimta/cisplatin regimen was not working. Unfortunately, she was still ineligible for surgery. Although a different chemo cocktail showed no progression of the tumor, it failed to show that the tumor had shrunk, either.

Chemotherapy has been discontinued, and five weeks from now she will do another CT scan to look into additional treatment. Gloria is struggling her hardest to keep the cancer at bay.

An American family

Gloria was born in 1953 in Goeppening, Germany, the daughter of a U.S. WWII army veteran and a German national. Her father, Francisco “Frank” Carillo, brought the family to the U.S. that same year, and the family relocated in southern California.

Gloria and Phil’s first daughter, Ricki-Ann, was born in1980. The family moved to Mission Viejo because Phil was studying to be a chiropractor. Gloria and Phil’s second daughter, Stacy, was born in 1981, and their daughter Lindsey was born in 1984. After Lindsey’s birth, Gloria became a full time housewife.

The dynamic and loving Serrins family has been built in large part by the unstinting love and devotion of Gloria. The unique character of each daughter was carefully nurtured so that each grew up to be a mature and responsible adult. Ricki-Ann loved being outside, and never played with dolls but liked sports, bikes, and action. Ricki-Ann played little league baseball as the only girl on her team, and later became an accomplished soccer player. Stacy loved play with Gloria’s jewelry, makeup, and clothing. At age three she entered dance school, and learned tap and ballet. Gloria would drive Ricki-Ann to soccer practice and Stacy to dance class and had to coordinate the transportation so no time was wasted. Stacy danced until she was twelve. The family never missed going to one of Stacy’s recitals.

Like her older sisters, Lindsey was always busy with sports and dance, and Gloria spent all her time taking care of the three girls. Gloria would volunteer at the girls’ elementary school until eventually she was at the school every single day. With three daughters at the same school at the same time, she helped the teachers any way she could. Gloria took care of other children as well, and when she became familiar with the kids and their parents she’d set aside Friday as the day to take her daughters and their friends to lunch at Taco Bell. The kids loved having Gloria in the classroom, and Phil would often come by the school on his lunch break. The daughters loved having their parents around at school.
Ricki-Ann graduated from the University of Maryland on a soccer scholarship.

Ricki-Ann is an assistant soccer coach at Tulane University in New Orleans. Stacy attended Santa Barbara City College where she studied art and dance. Stacy graduated from beauty college and works as an esthetician at the Montage Resort at Laguna Beach. Lindsey was recruited to UCLA for their crew team, and graduated in 2005 as a history major. She now works as an elementary school teacher in New Orleans, near her older sister. All three daughters attribute their success to their nurturing, involved, and tireless mother. Gloria’s devotion and dedication to her family, and her extraordinary toughness, are exemplified best when she says, with no trace of pride, “All three of my girls were natural childbirths. I didn’t want it any other way.”

After thirty-one years of marriage, Gloria and Phil have grown together spiritually and emotionally. They both love to garden and spend their weekends together in the yard. With numerous flowers in the yard, the centerpiece is Gloria’s rose garden. Gloria loves crafts, decorating, wildlife, and dogs. She has a blue-gold macaw that chatters gregariously in their home, and two Australian shepherds, Berkeley and Mac. She and Phil love to take their daily promenade around the neighborhood, and they enjoy walking along the nearby nature trails and wilderness areas.

“Gloria always kept things in check and kept me on track,” Phil says in disbelief, shaking his head at the catastrophic calamity that has befallen his family. “She was the one who was reasoned and even-handed with the kids. She never rushes to judgment or breezes past things. Gloria sees life, where most people just run through it. If she’s on skis, she won’t race down the mountain, but will stop and look at the trees and the animals, and even at the snow. We go to movies all the time. While the kids were growing up it was about Gloria being there to see them and raise them. We went to every school function, not just to be supportive but to be together. And now…” his voice trails off, “…this.”


All-American Mom and home decorator puts meso in its place

March 25, 2008

Healthy, active, and always involved in a dozen different projects, Marilyn Stratton’s active lifestyle meant that she was accustomed to lots of physical activity without ever batting an eye.

As a career interior decorator, Marilyn was used to lifting boxes, carrying heavy samples of rugs, tiles, wallpaper, carpets, and countless catalogs that showcased the tools of her trade. Until the summer months of 2006, when she began experiencing pain in her chest, Marilyn had been healthy her whole life long.

Concerned that someone as fit and active as she would be suffering from chest pains, her husband insisted on a visit to the doctor. X-rays taken in early June revealed a build-up of fluid around her lung. Was this pneumonia? The doctor was concerned and insisted on a thoracentesis later that month at St. Vincent’s Hospital in Portland.

What began as a simple chest pain developed into news of the most horrific sort: pathology analysis of the fluid resulted in a diagnosis of malignant pleural mesothelioma.

Circling the wagons

On October, 16, 2006, her doctor performed a biopsy and talc pleurodesis. Like most people diagnosed with mesothelioma, Marilyn had to make a series of complex, rapid-fire decisions with her doctor about what next to do.

The difficulty with meso, of course, is that even the physicians who specialize in its treatment have different opinions on the best course of treatment. The disease is almost individualistic, requiring doctors to carefully weigh their options depending on staging, lymph-node involvement, age, co-morbidity factors, cellular type, and a host of other criteria. All of this must be done at utmost speed, because time is always the enemy.

Marilyn was referred to an oncologist in Portland who had her undergo four rounds of Alimta/cisplatin chemotherapy. Although this regimen is the only procedure approved by the FDA for treatment of mesothelioma, surgeons and oncologists recognize that the best survival outcomes are generally obtained by multimodal therapy that includes surgery as the bedrock treatment.

While she was undergoing chemo, Marilyn was referred to Dr. Eric Vallieres at the Swedish Cancer Institute in Seattle for a surgical consultation. One of the nation’s leading meso surgeons, after meeting with Marilyn Dr. Vallieres concluded that she was a candidate for the surgery. Marilyn decided to undergo an extra-pleural pneumonectomy (EPP) with Dr. Vallieres.

Girding for battle

In the work-up prior to surgery, it was discovered that Marilyn had a lump in her throat. On January 5, 2007, Dr. Vallieres performed a mediastinoscopy. Pathology analysis of the node was negative for malignancy. This was a huge relief to Marilyn, because the lymph nodes are the super-highway of the body, capable of instantly spreading cancerous cells to distant locations. Because the node was not malignant, the surgery could go forward as planned.

This major operation went extraordinarily well, owing in part to the skill of Dr. Vallieres and in part to the toughness and resiliency of Marilyn. She came through it with flying colors and was on the fast track for the day that every patients dreams of: a hospital discharge and ticket to go back home.

Aftershocks

One week after surgery, however, Marilyn got a lung infection and had to go back into the hospital for antibiotics to quell the infection. Having only one lung, any type of viral attack could be critical. From the end of January through the onset of radiation was when she felt the worst. She was weak, out of breath, and not feeling good for months. The combination of the infection and the inflammation had taken a toll early on in her recovery, but as a strong and tough fighter she finally she got beyond it.

One consequence of the EPP that has remained with Marilyn is chronic shortness of breath. She was admitted to Swedish Hospital in Seattle in March to determine the cause of the shortness of breath. As soon as the testing for the cause of her shortness of breath is completed, Marilyn is scheduled to begin a course of 30 radiation treatments that will be administered over a period of six weeks.

Calm waters

Marilyn had a December consultation with her pulmonologist and surgeon, as well as a CT scan, and the results were completely clear. Her next scheduled appointment is in April. As a result of the CT scan she’s been taken off all her medicines: heart medications, coumadin, Alimta/cisplatin, prednisone (steroid for post-surgery infection and inflammation in remaining lung, high dosage), prilosec, sulphasalazine (colitis—still taking), metotrolol (heart medication), warfarin (heart medication), magnesium because level had dropped post surgery (quickly regained normal rates), oxycodone (painkiller), and zofran (anti-nausea drug to combat side effect of steroid).

Dr. Vallieres is very optimistic and has been positive through the whole process. Even during the lung infection he said it was “just a bump in the road,” and is very pleased with the good health and strength of this courageous woman. The pulmonologist said that she would never completely get her breath back, but time would tell and significant improvement has always been a reasonable and very attainable goal. The radiologist said that she had every reason to be optimistic because it appeared that the chemotherapy did a very good job. Dr. Vallieres’s skillful hands seemed to have removed all of the gross tumor, and the radiation had “sterilized the area.”

Marilyn is constantly amazed at how an extremely busy surgeon like Dr. Vallieres seems to have all the time in the world for her when she’s in his office. “He’s so friendly and always gives me a hug. He’s very different from many of the other physicians with whom I’ve had to deal,” Marilyn says with a laugh.

Marilyn couldn’t be happier about the results of the CT scan and being “cancer clear.” Although she doesn’t feel 100% yet, she’s very pleased with her status. She’s feeling better and her friends tell her she looks wonderful.

Living with mesothelioma

Marilyn’s life has been night and day different since surgery. Before, she rarely sat down, was a workaholic, always healthy, and didn’t tire easily. Meso has pulled her former lifestyle up short. During these last few months Marilyn has led a totally different lifestyle. She used to walk five miles twice/weekly, and all her other activities and she worked full time.

Marilyn continues to amaze the doctors who treat her. She’s already made a habit of walking 1.25 miles, and her GP was astounded. To Marilyn the recovery has gone slowly but in perspective she thinks the recovery has been fast. She doesn’t have the strength for pulling fabric off shelves and putting them back up again, or for furniture delivery and hoisting large area rugs she used to carry by herself. On the other hand, she’s discovered that the world has no shortage of people who make a living doing these very things!

Her skills as a decorator have been showcased in three “Street of Dreams” homes and a number of “Showplace Homes” in the Portland area during her lengthy and respected career. At the spry and vigorous age of 73, Marilyn is still coping with the dent that meso has made in her active, productive, and fulfilling lifestyle prior to the onset of symptoms.

Marilyn and her husband Richard once kept active by going on walks together. Their favorite place was at downtown Portland’s waterfront. Now, she is out of breath after simply walking across the room. This has made getting around their multi-story home difficult and painstaking.

In recent years, Marilyn and Richard traveled the world together. Singapore, Bangkok, Canary Islands, New Zealand, Australia, and an annual trip to Mexico are just a few of the destinations they have enjoyed.

A loving mom and grandmother, Marilyn also enjoys spending time with her two daughters, Susan and Shari, both of whom live nearby. She also enjoys spending time with her five grandsons, three of whom are students at Oregon State University, of whom is serving in the U.S. Air Force, and one who is in high school. With courage and an indomitable will, Marilyn continues with great cheer and grace.


Standing strong against mesothelioma: pleurectomy/decortication with Dr. Cameron

October 16, 2007

All Systems Go!

In one hour, 68 year-old Kermit Kelley was about to undergo life-altering surgery. It was nine a.m. in the pre-op staging area at UCLA’s David Geffen School of Medicine. A steady stream of nurses and doctors had been visiting Kermit since seven o’clock, hooking him up to this, inserting that.

Since his diagnosis with malignant mesothelioma in July, 2007, Kermit and his wife Kerry had pored over the medical literature. They asked all the questions: Should he have chemotherapy? If so, when—before surgery or after? Should he even have surgery? If so, what surgery? The extra-pleural pneumonectomy (EPP), in which the diaphragm, tumor and lung are amputated? Or the pleurectomy/decortication (P/D), in which the doctor removes only the tumor and spares the lung?

Sifting for a solution

The answers were not clear cut. “We knew that lots of doctors liked the EPP,” said Kerry. “But we hated the idea of losing Kermit’s lung. Why take out the lung if it’s healthy and free from cancer? It just didn’t make any sense.”

 

Kelley 1

Bring it on! Kermit Kelley and wife Kerry await final instructions before surgery. UCLA’s David Geffen School of Medicine, September 27, 2007.

The Kelleys learned that the EPP was widely considered to be the surgical standard of care. “Sure, it’s the standard,” said Kerry. “But what does that mean? The standard for every breast cancer used to be a radical mastectomy, and now we know how wrongheaded that was. I’m no doctor, but I’ve got common sense, and some things just don’t feel right.”

They knew that neither operation would cure Kermit’s mesothelioma. Both operations, even if performed by a world-class surgeon like Dr. Cameron, would leave microscopic malignant cancer cells in the chest cavity. They learned that recurrence was virtually certain, that it was a matter of “when” rather than a matter of “if.”

“Then we found out that the EPP can sometimes actually speed up the spread of the disease. That really scared us. Why would we do a surgery that takes away a healthy lung and helps the cancer grow in other parts of his body? It didn’t add up.”

The Kelleys were troubled that if they had the EPP, the risk of cancer spreading might increase, since the surgeon typically removes the entire diaphragm, a cutting process which can create holes through which malignant cells metastasize elsewhere by spilling into the peritoneum.

Since the tumor’s recurrence is a virtual certainty, what if it cropped up in the only good lung after the other lung had been removed? What then? The evidence began to tilt in favor of Dr. Cameron’s pleurectomy/decortication.

Straight talk

The Kelleys consulted with Dr. Robert Cameron, director of the Mesothelioma Program at UCLA.

“I liked him right away,” said Kermit. “Forthright. No sugar-coating. Compassionate. Objective. A man you can respect after the first five words come out of his mouth.”

Kelley 2

Encouragement: Dr. Cameron advises Kermit of test results showing the tumor had encased the lung and locked up the diaphragm. Game plan: liberate the lung, restore normal lung function.

Adds Kerry, “Dr. Cameron didn’t promise a cure or tell us that his surgery was always better than the EPP. He laid out the facts—because of all the other parts of therapy and other factors and such, you can’t scientifically say one is better than the other. But he did say he would try to buy us some time.”

If the surgery succeeded, the post-operative period would allow them to also pursue complementary therapies such as immunotherapy with interferon alpha. Dr. Cameron explained that the published survival data did not clearly favor the EPP over the pleurectomy. He advised that more articles were being published that questioned the presumed merits of the EPP over the P/D, much as surgeons years ago began to question and later discard the strategy of performing a radical mastectomy for every breast cancer.

The Kelleys were also impressed with quality of life issues after the surgery. “I’ve got a good heart, but I was concerned about putting more stress on my ticker if I only had one lung,” Kermit said.

Kermit, a career water works contractor in the public and private sector for over thirty years, knew the value of hard work. “Sometimes doing the job right means working harder and longer. You know that on the job site, but you don’t ever think about it like that with surgeons. You know, it’s true. Sometimes the difference between doing a good surgery is kind of like doing a good piece of carpentry, the guy who is more patient and has more experience and knows his tools better and knows his wood better is the guy who does the better job. You don’t think of working on a lung the same as working on a cabinet, but I suppose when you get down to it, maybe it is.”

Kelley 3

Search and destroy: Dr. Cameron (R) and Dr. Peng (L) opening the chest. The thick rind of tumor was immediately evident.

The Kelleys learned that the EPP was a simpler procedure that took 3-4 hours, whereas Dr. Cameron’s surgery was more complicated, and often took 4-9 hours, depending on whether the tumor had invaded the chest wall, heart sac, or diaphragm. Kermit read that each procedure cost about the same, but that Medicare paid the surgeon more for the easier EPP than for the longer, more arduous P/D.

Crossing the Rubicon

“That did it for me,” Kermit said. “Dr. Cameron is willing to work twice as long for less money because he believes the pleurectomy is the way to go. If I’m going to let a doctor stick his hands into my chest, I want the hands of a skilled craftsmen who’s not afraid of hard work. That’s how I was raised.”

Kermit decided that he could more effectively pursue the healing process with two healthy lungs rather than one, quarterbacked by a doctor who was not afraid of a hard day’s work, who was an expert surgeon, and who was committed to helping his patient from start to finish. “I didn’t want a surgeon who would cut and run. I know this is a long haul. I wanted a doctor who would help us with options after surgery.”

Adds Kerry: “We believe it all came down to quality of life. With two healthy lungs he has a better chance of recovering from the surgery and has a better chance of living a high quality of life.

A tumor that slowly suffocates

Thoracic surgery is one of the surgical specialties whose practitioners are often regarded with awe. These are the men and women who operate on and around the heart and lungs, the organs that more than any except the brain symbolize humanity and life. The P/D begins by cutting open the chest, clipping out a rib, and spreading open the chest wall.

In a healthy person, such a procedure would reveal the lung and diaphragm, working together to pump air into the oxygen-hungry body. But in Kermit’s case, the open chest revealed a smooth, red, thick rubbery blanket that encased the entire lung and stuck like cement to the chest wall.

The massive mesothelioma tumor had grown around his lung, compressed it, and finally collapsed it. He had only one lung working now, and the void in his chest testified to the power and destructive force of the relentless tumor.

Stripping away the serpent

Dr. Cameron first explored the extent of the tumor with his hand, inserting it into Kermit’s chest. Although the PET scan had depicted the tumor as small to moderately sized, reality proved far different. As it slowly strangled his lung, the cancer had also latched onto the lining of his heart and his diaphragm. Inveigling itself with a complex network of veins and arteries, the giant tumor had positioned itself so that removing it might be more dangerous than leaving it alone.

Kelley 4

The devil by its horns: After stripping the tumor off the chest wall and lung apex, Dr. Cameron holds a flap of tumor. Fours hours to go.

It became clear in an instant why so many surgeons prefer the EPP and eschew the P/D: patience and skill. Working the tenacious and deadly tumor away from the organs and arteries had to be done millimeter by millimeter. The patience, concentration, and methodical repetition required to strip away the cancerous blanket are monumental. It takes all of that, plus nimble fingers, which are probably the surgeon’s best tumor-stripping device.

Uncertainty was another factor. What if after all the hard work of chiseling the tumor off the chest wall and diaphragm it turned out the tumor had trespassed – i.e., contaminated – the actual lung lobes? If the surgeon simply amputated the entire tumor-encoated lung, without daring to strip it off, and it later turned out the lungs were tumor free, well, by that time it would be too late. More risk, more tedious labor were the only certainties. But, with all big risks comes great pay-offs.

Dr. Cameron’s legendary stamina was evident after the first few hours passed. Never leaving his patient’s side for even a second, he carefully and laboriously performed his delicate work. As other members of the surgical team finally succumbed to fatigue or shift’s end, Dr. Cameron remained at the helm of his ship, calmly, patiently, firmly guiding the hulk of his surgical team to its final destination: peeling away the cancer within

Dr. Richard Peng, an enormously talented young surgeon from Orange County, worked in tandem with Dr. Cameron, following his guidance and working with extraordinary care and precision within the narrow confines of the chest cavity. Dexterously using his surgical tools as he sutured together a patch of bovine diaphragm to replace the pieces of diaphragm lost to the tumor, Dr. Peng displayed the same level of focus and complete absorption as his mentor. They had to, as stripping away tumor off of a 2 mm thick sheet of muscle is like cutting glue from the surface of a balloon without puncturing it. Dr. Cameron and Dr. Peng were well aware of the risks of nicking the diaphragm and thus providing a portal through which the malignant cells could travel to the gut.

 

Kelley 5

Out, out!: Dr. Cameron holds the thick, rubbery tumor after meticulously scraping it off the thin diaphragm muscle.

The beating heart

Kermit’s tumor, however, had decided to throw Dr. Cameron a curve. In addition to its insidious growth along the lung and diaphragm, it had snaked its way up to the pericardium, the delicate sac that encloses the human heart. Removing the tumor without damaging the pericardium was crucial to keeping the cancer off of the heart. In a worst-case scenario a patient can live with only one lung—the same can obviously not be said for the heart.

By now the operation was six hours long, and at a time when most people would collapse simply from having to stand in one place for so long, Dr. Cameron was just as focused and fresh as the moment he’d begun—never mind that he had left the operating room the prior evening at midnight. Never moving from his patient’s side, he and Dr. Peng carefully began what can only be described as a procedure that is delicate beyond belief.

The attempt succeeded, and the heart was safe.

The home stretch

A full seven hours into the surgery, Dr. Cameron moved to the final part of the operation: removing the tumor from the lung itself. This part of the surgery has often been called “impossible” by experienced thoracic surgeons, since the tumor creeps down into the deep folds and fissures that separate the different lobes of the lung. With a smile, Dr. Cameron showed the “impossibility” of this aspect of the surgery, using the most sophisticated and delicate instrument ever created: his index finger.

Gently moving his finger into the fissures, he easily lifted out the tumor. Soon enough the entire cancer was peeled back like the diseased rind of an orange and removed from Kermit’s chest. Beneath the cancerous blanket lay a big, pink, healthy lung, waiting to step up in its lifelong service to the body’s blood. With a twist of the anesthesiologist’s knob that poured life-giving oxygen into the collapsed lung, the lung filled with air and swelled up to recapture its former space within the chest.

Dr. Cameron watched for a moment, and then said with a smile, “Look at that. A perfectly good lung. Why would anyone want to cut that out and throw it away? I think it looks pretty good right where it is.”

Kelley 6

Let my lung breathe!: Dr. Peng holding the tumor while Dr. Cameron peels the tumor from the lung.

About nine hours after opening up Kermit’s chest, Dr. Cameron and Dr. Peng removed the four-pound tumor in one piece from the cleaned up chest cavity. “Fruits of their labor?” Not exactly. The fruit of their labor was still inside Kermit’s chest, where it belonged, a pink plum of a human lung, ready to return to action. Not a bad pay-off for a few extra hours of hard labor, especially for Kermit and his family.

Mesothelioma patients giving back

Kermit’s desire to educate patients, doctors, and the world about mesothelioma and its treatment is a common thread that runs among victims of asbestos poisoning. John McNamara, a mesothelioma survivor like Kermit who was also treated by Dr. Cameron, decided that he would lend a hand as well. John and his wife T.C. bought an apartment in Los Angeles, furnished it, and made it available to any mesothelioma patient seeking consultation or treatment from Dr. Cameron.

This generous donation made the Kelleys’ initial visit and surgery in Los Angeles possible. Generosity tends to spread. Like the McNamaras, the Kelleys before and after the surgery expressed their wish to help educate others about Dr. Cameron’s surgery. “We’d like others to know about the surgery,” said Kermit, who agreed to having his surgery photographed. “I don’t think of myself as either a ‘guinea pig’ or a ‘trailblazer.’ I’m just a guy who’s making the best of a bad situation. I’ve learned a few things from patients before me, and I hope to contribute my own story. “

Working together, and coordinated through the Pacific Heart, Lung, and Blood Institute, the McNamaras and Kelleys have helped turn another page in the treatment and education about this disease.

www.mesothel.com

www.rogerworthington.com


Giant and patriarch of the meso family finds peace

October 9, 2007

John McNamara: 4/27/46-10/7/2007

by Seth Davidson

San Pedro, CA – October 8, 2007

John McNamara’s voice fell silent, once and for all, on October 7, 2007. The voice of a champion, the voice of a husband, the voice of a father, the voice of a patient, the voice of a veteran, the voice of a hero, the voice of an advocate, the voice of a friend, the voice of a man demanding justice, the voice of a seer, the voice of a fighter, the voice of a peacemaker–each of these myriad voices and a thousand more fell silent on Sunday, more than three years after John was diagnosed with pleural mesothelioma.

The reverberations of John McNamara’s voices, however, resonate with the same strength and power as on any other day, because the voice of truth speaks forever.

John and daughters

“I met John shortly after he was diagnosed,” said friend and attorney John Caron. “After five minutes you realize you’re spending time with a lifelong friend. He took on life with extraordinary energy, and his fight against meso was the same way. He didn’t know the meaning of rest. Shortly after surgery he was walking, hiking, then calling from the top of Diamond Head with his daughters, laughing to say he’d passed a bunch of younger people, none of whom appeared to have mesothelioma. That’s the same energy he poured back into the meso community.”

Unbowed, unafraid

Like tens of thousands before him, John was struck down by mesothelioma in the prime of his life. Even with mesothelioma, at the age of 61 John’s “prime of life” was a force to reckon with. Two days before he died, John and his beloved T.C. were in Washington, D.C. with their “band of meso brothers” advocating for increased medical research on this dreaded disease.

John and T.C.

The foundation of his life was his marriage to T.C. More than thirty years of passion, love, commitment, struggle, and partnership had molded John into the iron man-mountain that he was. Despite the bad odds, the frequent hospital visits, and the roller coaster of emotions all cancer survivors ride, if you spent one minute around this dynamic duo you felt that everything was possible. After his surgery, radiation therapy, and interferon treatments, John seemed to be riding the crest of a beautiful wave, propelled by powerful forces, without end.

Even when the end came, his doctors puzzled over the exact precipitating cause. John suffered a recurrence of his cancer in early September, but his doctors opined that the likely cause of death was pneumonia brought on by an aggressive and swift infection.

“John was an incredible warrior who approached mesothelioma like he approached life, with individuality, vigor and courage,” reflected Dr. Robert Cameron, thoracic oncologist at UCLA’s David Geffen School of Medicine who operated on John in November, 2005.

“He never acknowledged the suffering that he endured, even to the end,” continued Dr. Cameron, who helped treat John at his hotel in Washington when John suddenly experienced severe back pain and numbness while the two were attending a mesothelioma medical symposium. “John dedicated himself to helping others with the disease, even when his own life was in jeopardy. His passing will be a sad loss for the entire mesothelioma community.”

John and T.C. were always thankful for the extra time they believed Dr. Cameron gave them. When he was first diagnosed, local doctors soberly predicted that John only had a few months to live, and that aggressive treatments would be futile.

Good works from the heart of a great man

The McNamaras understood that mesothelioma patients faced a gauntlet once they received their diagnosis. The biggest hurdle is access to treatment. For patients who live far from the East or West coasts, travel and lodging logistics consume precious time, money, and emotional energy.

Having gone through the wringer, John immediately put himself in the shoes of those not fortunate enough to live near UCLA, and for whom a consultation at UCLA’s mesothelioma program with Dr. Cameron would be an unbearable burden. The McNamaras decided to help ease the burden for others. They rented an apartment, furnished it, and made it available for free to mesothelioma patients visiting Los Angeles to consult with Dr. Cameron.

Kerry Kelley, whose husband Kermit underwent surgery in October and who stayed at the McNamara’s mesothelioma apartment, calls the McNamaras “a godsend. John and T.C. didn’t know us. But they knew what we were going through. We couldn’t have done this without them.”

John knew that his own experience with mesothelioma was invaluable, and rather than dwell on his own situation he took every opportunity to contribute and to support the cause of eradicating mesothelioma. Every year at the MARF mesothelioma symposium, John was there. Slapping backs, importuning legislators, encouraging patients, interrogating researchers, he awed those around him with his courage and good cheer. Hope, the resource always in shortest supply for mesothelioma patients, was as close as John’s ten-acre smile, in unlimited quantities.

“He was an empowering, courageous man,” says Linda Reinstein, executive director and co-founder of the Asbestos Disease Awareness Organization. “He told me about his next great goal-to climb Half Dome. That unconquerable, sheer granite face that looks impossible, but that you can get up if you take it one step at a time. It’s a meso march. One step at a time. And John had it in his sights.”

John’s “Bully Pulpit”

When the 2007 conference came around, John cheerfully made plans to attend once again as a donor, spokesman, and leader for the patient community. Before the October symposium, however, he learned that his cancer had returned. This time it had metastasized as a tumor on his spine. His physician counseled him to stay at home and gather his strength for an operation to remove the tumor.

Stay at home? John McNamara? Miss the most important mesothelioma advocacy conference of the year due to a life-threatening tumor? Refuse to mount the steps and hold forth from his bully pulpit? For John McNamara, the risks were worth the reward.

He packed his bags and arrived at the conference full of vigor and ready to lead the charge one more time. On Thursday evening John joined the mesothelioma community on the steps of our nation’s Capitol, where he lent his powerful voice to a candlelight vigil honoring those who had succumbed to the ravages of asbestos. His voice and the voices of thousands of others had coalesced into something concrete: passage of U.S. Senator Patty Murray’s Ban Asbestos Act.

“You know, if it wasn’t for Dr. Cameron, I wouldn’t be here,” John mused on Thursday. “I wouldn’t be anywhere. This cancer, I don’t have time for it. I have young children to raise and important things to do-like making sure they get good report cards.”

John’s priorities were grounded in the bedrock of his family. He felt that his obligations as a father were the most important ones he had, and he had no intentions of letting meso interfere.

The symposium saw John at his full-blown best, making new friends who walked away feeling like they’d known him since childhood. He chatted up countless strangers, people who lost “stranger” status after the first five seconds, and lectured them about the importance of investing in real estate. If you had a hand, and you were at the 2007 symposium, it was shaken by John McNamara. If you had a soul, he looked into it, and left you smiling.

Jessica Like, executive director of the Pacific Heart, Lung & Blood Institute, spoke eloquently about John and his journey. “Three days ago I was present when Senator Patty Murray said, ‘When someone with great passion dies, that passion is passed along to someone else,’ as she addressed a congregation of mesothelioma patients. As I listened to her speech sitting next to T.C., I thought about John’s absolute passion for life. Every day he brought hope to other mesothelioma patients by sharing his story, by donating time and money, and by spreading the word about mesothelioma and our need to find a cure. Over this past weekend I watched John smile as he told others about traveling, raising his children, being a doting grandfather and husband, and in his spare time, battling to fund mesothelioma research and help pass legislation that would ban asbestos forever in this country. His great passion was contagious and he bestowed it upon the hundreds of people he touched. We have all been robbed of John McNamara, but we will carry the legacy of his passion in our hearts forever.”

The voice that none could silence

The relentless pace and pressure of the symposium began to accumulate. Going full-bore all day Thursday and Friday, John’s massive frame slowly began to weaken. His method of rest? Taking the afternoon off on Friday to go sightseeing. John struggled to get from the front door of the hotel to the elevator, taking baby steps.

Late that afternoon the paralysis set in, and John did not leave his room that evening. A first. Then John missed the group photo that night at dinner. A first.

Bowed, never broken, he made the stand of a giant at his last MARF conference, refusing to let the disease deprive him of so much as a single word. If meso would take him down, it would be in the service of the people who needed him, surrounded by those who loved him, calling out in righteousness and good cheer that this disease must be cured now.

By Sunday night, when John’s plane touched down in Los Angeles, his condition was critical. Rushed to the emergency room at UCLA, he succumbed in the early morning hours.

The speed and finality of John’s passing has left us all stunned, bringing to mind the wise words of another whose beloved husband was similarly felled: “When the end of mesothelioma comes as a shock, you know he has lived a courageous life.”

Better, more fitting words for a titan like John have never been said.

John is survived by his wife T.C., and his three children Nicollette Annie, Shannon Hayley, and Katherine Claire.


Susan MacDonald fights mesothelioma on her own terms

September 24, 2007

San Pedro, CA – Aug. 10, 2007 – Susan MacDonald is a 62 year-old general manager of a senior citizen condominium association. Susan loved her work, and in addition to her full-time job she enjoyed tennis, golf, and scenic drives along the California coast with her husband, Geri. Geri is a retired Navy machinist and now works as an assistant director of mechanical trades and operations for a large manufacturing plant.

Susan always knew that good health was the foundation for a good life, and she enjoyed long walks for relaxation and in order to stay fit. In early May, 2001, trim and health-conscious Susan noticed that walking had become difficult, and her breathing was labored. These were startling symptoms for a tennis player, avid walker, golfer, and active full-time manager. Her normally robust health seemed to be affected on other fronts as well, as she began to experience chronic headaches.

Susan knew something was wrong, and she consulted with her primary care physician in Downey, California. He thought she might be suffering from a minor bronchial infection and suggested an antibiotics regimen. He took a chest film, but Susan never heard back regarding the results. Like so many other mesothelioma patients, Susan was learning that the medical profession could be the worst place to turn for timely help and effective treatment.

Susan’s shortness of breath and fatigue continued. On September 13, at the urging of her daughter Laurie, she underwent an imaging diagnostic test. The results showed a problem in the right thoracic cavity. The imaging test was burned onto a CD, and given to her with instructions to consult with her physician immediately.

From bad to worse

Susan gave the CD to her primary care physician the next day. He listened to her complaints, as well as her concern that he had never given her the results of the previous x-ray. The doctor reviewed the images and then found the x-ray, which he later admitted to having misplaced. That initial film clearly showed the beginning of fluid accumulation at the base of Susan’s right lung. The doctor suggested an urgent CT scan, promising to schedule the scan immediately, and assuring Susan that he would direct his nurse to secure an appointment by the end of the week. The MacDonalds never heard back, and only after repeated calls did the doctor finally schedule the test in Los Angeles.

On September 15, Susan’s breathing problems drastically worsened. Laurie insisted on emergency treatment, and the family rushed her to the emergency room at the University of California Irvine Medical Center. An ER physician immediately ordered chest films, a CT scan, an EKG, blood tests, and other diagnostic workups. He attempted a thoracentesis, but could not withdraw any fluid as a thick accretion of tissue impeded the insertion of the needle. Susan was under observation for nine hours.

A pro tries to replace a hack

The ER physician understood the gravity of the situation, and took full charge of Susan’s situation. He informed her and her family that he wanted to admit her to the hospital immediately. However, Susan’s HMO inexplicably would not authorize the hospitalization, and the MacDonalds reluctantly decided to seek treatment within their HMO’s plan and authorized hospital. The ER doctor reluctantly agreed to release Susan only if she first agreed to seek hospitalization elsewhere immediately. At the same time they were fighting against a possibly serious illness, the MacDonalds were also marshalling their resources to persuade their own insurance company to perform its contractual and moral obligations.

On September 17, Susan presented again to Downey Hospital. Laurie had called Susan’s physician to inform him that they were proceeding to Downey, and she gave him the option of meeting them there or authorizing Susan’s admittance. He agreed to neither and asserted that she and her family were overreacting. After more than six hours of testing and waiting at the emergency room, the physician informed them that Susan’s physician had refused to admit her and insisted that she go to his office the next morning.

The next day, Susan again consulted with her physician. He advised that he was still trying to schedule a CT scan. Laurie, who had been compelled to leave her job to look after her mother and assist her in finding treatment, called the physician’s office every day to ensure that the CT scan took place, that the results went to the right place, and that her mother received a referral to a pulmonologist.

Susan underwent the CT scan on September 19. With a good deal of self-assertive effort, Susan was seen on September 23 by a Lakewood, California, pulmonologist to whom her insurance group had referred her. The pulmonologist reviewed the CT scan and additional chest films, including the original taken in May. He determined that there was a pleural effusion covering half of Susan’s right lung and that it had grown substantially since May.

The pulmonologist scheduled and performed a bronchoscopy on September 25. He was unable to biopsy any tissue. He also performed a thoracentesis, withdrawing approximately 200 ccs of yellowish, mucous-colored fluid. Cytological tests upon the fluid were negative for malignancy.

Not convinced by the cytological tests that Susan was healthy, the pulmonologist recommended a thoracotomy with biopsy. As he did so, he also advised the MacDonalds he would have to refer them, with additional delay, and asked that they wait another two weeks for the results of another chest film.

Frustrated to the breaking point by the constraints of their HMO, the MacDonalds switched treatment groups. They would have to begin with a fresh consultation with a new primary physician with a new group of doctors and hospitals. They would also have to wait for two weeks, but they hoped the temporary setback would push them further ahead than if they did nothing. On November 1, Susan met with her new physician who understood the gravity of her situation and referred her to a new pulmonologist.

A fresh start

Susan met with the new pulmonologist on Nov 7. He ordered a new CT scan, and the results of the scan showed that her effusion as expected was growing, and her right lung’s breathing capacity was steadily diminishing. Susan’s pulmonologist advised surgery, but since Susan’s HMO would not permit such a procedure for several weeks, he advised her to present to the Emergency Room of Hoag Hospital in Newport Beach that same day.

Susan’s pulmonologist met with her at Hoag that day and brought in a thoracic surgeon to perform a thoracotomy, pleural stripping, and a biopsy procedure. The surgeon made two incisions beneath the right arm and harvested tissue for pathological testing. He then insufflated talc to adhere the lung to the chest wall and prevent the recurrence of pleural effusions. He inserted a tube for drainage, which would not be removed for several days. Intraoperative frozen section analysis confirmed that Susan had a malignancy of unknown type. Susan’s surgeon told the MacDonalds immediately after the surgery that Susan had lung cancer.

Susan was assigned an oncologist who visited with her in the hospital and advised her that the pathology department had pinpointed the diagnosis as malignant mesothelioma. He wanted to administer chemotherapy immediately, but Susan declined, feeling that she needed more information. Susan was discharged the night before Thanksgiving.

A united family fights back

With the support of Geri and the help of Laurie, Susan began investigating treatment options. Everywhere she turned, she found either a lack of information, a glut of misinformation, or so much information that it was impossible to decide what to do. Reluctant to endure the traditional and taxing rigors of chemotherapy with no guarantee of meaningful results, she researched the possibility of Alimta trials at the CTRC in San Antonio. The family researched new treatments, clinical trials, and any surgical options for treating mesothelioma. She researched and reviewed information about Dr. David Sugarbaker at Brigham and Women’s Hospital in Boston, Massachusetts, and his extra-pleural pneumonectomy with heated chemotherapy wash.

Despite the merits of this and other programs, it was the pleurectomy/decortication procedure performed by Dr. Robert Cameron of UCLA that caught her attention. Both the EPP and the P/D are radical procedures, but Susan preferred to keep both of her lungs and felt that she would be more physically suited to undergo and recover from the pleurectomy/decortication. For a more complete discussion of the issues faced by a patient deciding between the two surgeries, please click here.

Pushing on with a pleurectomy

At Susan’s request, her oncologist referred her to Dr. Cameron. She was immediately pleased with his patient-oriented attitude. She felt comfortable, and summarized her needs with great eloquence: “I don’t want a cheerleader with all the rah-rah stuff, I just want a capable and honest doctor who will help me fight for my life.”

After spending an hour and a half in consultation with Dr. Cameron, during which she learned about the statistics surrounding her disease, the P/D procedure, and her eligibility for it, Susan felt a mild sense of relief that her treatment was finally moving ahead.

Compassion and resilience

Despite having to steel herself for the rigors of major surgery, Susan evinced true concern for other patients facing the same predicament. She and Geri had been side-by-side since they were children, and have been married 43 years, with five healthy grown children and six grandchildren. They felt fortunate to have one another and to have their family. They supported each other and worked together to force a recalcitrant system work for them. They faced an HMO that refused potentially life-saving requests, a doctor who lost a crucial part of her file, and staffers irritated that a united family would dare to enter the doctor’s office together and bother to ask so many questions. Susan thinks about the people she knows in the association she runs and others like them — most of them elderly, many without families — trying to get medical care and the answers they need. With those considerations in mind, she says with righteous indignation: “God help them, they haven’t got a chance.”

Susan adds: “I was unfortunate enough to have been in the first medical group and very fortunate to have switched into the new group and to have had this new group of doctors respond so quickly and so effectively on my behalf. I was also fortunate enough to have a family member who could devote all her time to working on my medical issues daily and another daughter who could stay with me continuously for support and care.”

At the same time, she resents the asbestos-producing companies that put profit over people, and exposed her to asbestos through her husband’s clothing during his career as a machinist in the navy. She and Geri were planning to begin building a home in Maine this summer near one of their daughters, and to continue enjoying their retirement. With the onset of Susan’s illness, they had to put their retirement on hold. Susan is the rock of her family, a dedicated wife and mother who devoted her life and beautiful spirit to her husband and children. She is greatly respected and dearly loved.

“I’m only 62,” she says. “We had great plans, and I was so excited about the future. I am young, and young at heart.”

Beating the odds

Susan MacDonald planned to live. She is a resilient and strong woman who intended to fight back against the disease and win. She rallied in her own personal fight against mesothelioma, and did it with the resources and support of a fully committed family. Together, they sought treatment, trusted in prayer, and counted on the blessings of God to get them through.

Five years after her pleurectomy/decortication surgery with Cameron, and five and a half years after being diagnosed with mesothelioma, Sue MacDonald and her family recognize they have been blessed. She was originally given a fourteen month prognosis, provided she recovered well from the surgery and the follow-up radiation and interferon therapies. As of March 2007, she has made it 63 months past surgery, but more importantly, she is not just alive, she is living well.

While Susan’s health limits her ability to do some activities, she doesn’t hesitate to shop, go to the grocery store, or take walks on the beach with her family. Sue works out with a personal trainer twice a week for about an hour and a half, working with weights and limbering up her upper body. For a portion of that time she walks on a treadmill, as well and works on breathing exercises, too.

Every four months, Sue has a CT/PET scan to monitor the cancer, which has been completely clear for years now. She continues to see Cameron for follow ups. “Sue’s the one that holds everyone together. She didn’t go sit in the chair and say it was all over five years ago,” says Gerri, and “that’s why she is here today.”


Susan MacDonald fights mesothelioma on her own terms

August 10, 2007

San Pedro, CA – Aug. 10, 2007 – Susan MacDonald is a 62 year-old general manager of a senior citizen condominium association. Susan loved her work, and in addition to her full-time job she enjoyed tennis, golf, and scenic drives along the California coast with her husband, Geri. Geri is a retired Navy machinist and now works as an assistant director of mechanical trades and operations for a large manufacturing plant.

Susan always knew that good health was the foundation for a good life, and she enjoyed long walks for relaxation and in order to stay fit. In early May, 2001, trim and health-conscious Susan noticed that walking had become difficult, and her breathing was labored. These were startling symptoms for a tennis player, avid walker, golfer, and active full-time manager. Her normally robust health seemed to be affected on other fronts as well, as she began to experience chronic headaches.

Susan knew something was wrong, and she consulted with her primary care physician in Downey, California. He thought she might be suffering from a minor bronchial infection and suggested an antibiotics regimen. He took a chest film, but Susan never heard back regarding the results. Like so many other mesothelioma patients, Susan was learning that the medical profession could be the worst place to turn for timely help and effective treatment.

Susan’s shortness of breath and fatigue continued. On September 13, at the urging of her daughter Laurie, she underwent an imaging diagnostic test. The results showed a problem in the right thoracic cavity. The imaging test was burned onto a CD, and given to her with instructions to consult with her physician immediately.

From bad to worse

Susan gave the CD to her primary care physician the next day. He listened to her complaints, as well as her concern that he had never given her the results of the previous x-ray. The doctor reviewed the images and then found the x-ray, which he later admitted to having misplaced. That initial film clearly showed the beginning of fluid accumulation at the base of Susan’s right lung. The doctor suggested an urgent CT scan, promising to schedule the scan immediately, and assuring Susan that he would direct his nurse to secure an appointment by the end of the week. The MacDonalds never heard back, and only after repeated calls did the doctor finally schedule the test in Los Angeles.

On September 15, Susan’s breathing problems drastically worsened. Laurie insisted on emergency treatment, and the family rushed her to the emergency room at the University of California Irvine Medical Center. An ER physician immediately ordered chest films, a CT scan, an EKG, blood tests, and other diagnostic workups. He attempted a thoracentesis, but could not withdraw any fluid as a thick accretion of tissue impeded the insertion of the needle. Susan was under observation for nine hours.

A pro tries to replace a hack

The ER physician understood the gravity of the situation, and took full charge of Susan’s situation. He informed her and her family that he wanted to admit her to the hospital immediately. However, Susan’s HMO inexplicably would not authorize the hospitalization, and the MacDonalds reluctantly decided to seek treatment within their HMO’s plan and authorized hospital. The ER doctor reluctantly agreed to release Susan only if she first agreed to seek hospitalization elsewhere immediately. At the same time they were fighting against a possibly serious illness, the MacDonalds were also marshalling their resources to persuade their own insurance company to perform its contractual and moral obligations.

On September 17, Susan presented again to Downey Hospital. Laurie had called Susan’s physician to inform him that they were proceeding to Downey, and she gave him the option of meeting them there or authorizing Susan’s admittance. He agreed to neither and asserted that she and her family were overreacting. After more than six hours of testing and waiting at the emergency room, the physician informed them that Susan’s physician had refused to admit her and insisted that she go to his office the next morning.

The next day, Susan again consulted with her physician. He advised that he was still trying to schedule a CT scan. Laurie, who had been compelled to leave her job to look after her mother and assist her in finding treatment, called the physician’s office every day to ensure that the CT scan took place, that the results went to the right place, and that her mother received a referral to a pulmonologist.

Susan underwent the CT scan on September 19. With a good deal of self-assertive effort, Susan was seen on September 23 by a Lakewood, California, pulmonologist to whom her insurance group had referred her. The pulmonologist reviewed the CT scan and additional chest films, including the original taken in May. He determined that there was a pleural effusion covering half of Susan’s right lung and that it had grown substantially since May.

The pulmonologist scheduled and performed a bronchoscopy on September 25. He was unable to biopsy any tissue. He also performed a thoracentesis, withdrawing approximately 200 ccs of yellowish, mucous-colored fluid. Cytological tests upon the fluid were negative for malignancy.

Not convinced by the cytological tests that Susan was healthy, the pulmonologist recommended a thoracotomy with biopsy. As he did so, he also advised the MacDonalds he would have to refer them, with additional delay, and asked that they wait another two weeks for the results of another chest film.

Frustrated to the breaking point by the constraints of their HMO, the MacDonalds switched treatment groups. They would have to begin with a fresh consultation with a new primary physician with a new group of doctors and hospitals. They would also have to wait for two weeks, but they hoped the temporary setback would push them further ahead than if they did nothing. On November 1, Susan met with her new physician who understood the gravity of her situation and referred her to a new pulmonologist.

A fresh start

Susan met with the new pulmonologist on Nov 7. He ordered a new CT scan, and the results of the scan showed that her effusion as expected was growing, and her right lung’s breathing capacity was steadily diminishing. Susan’s pulmonologist advised surgery, but since Susan’s HMO would not permit such a procedure for several weeks, he advised her to present to the Emergency Room of Hoag Hospital in Newport Beach that same day.

Susan’s pulmonologist met with her at Hoag that day and brought in a thoracic surgeon to perform a thoracotomy, pleural stripping, and a biopsy procedure. The surgeon made two incisions beneath the right arm and harvested tissue for pathological testing. He then insufflated talc to adhere the lung to the chest wall and prevent the recurrence of pleural effusions. He inserted a tube for drainage, which would not be removed for several days. Intraoperative frozen section analysis confirmed that Susan had a malignancy of unknown type. Susan’s surgeon told the MacDonalds immediately after the surgery that Susan had lung cancer.

Susan was assigned an oncologist who visited with her in the hospital and advised her that the pathology department had pinpointed the diagnosis as malignant mesothelioma. He wanted to administer chemotherapy immediately, but Susan declined, feeling that she needed more information. Susan was discharged the night before Thanksgiving.

A united family fights back

With the support of Geri and the help of Laurie, Susan began investigating treatment options. Everywhere she turned, she found either a lack of information, a glut of misinformation, or so much information that it was impossible to decide what to do. Reluctant to endure the traditional and taxing rigors of chemotherapy with no guarantee of meaningful results, she researched the possibility of Alimta trials at the CTRC in San Antonio. The family researched new treatments, clinical trials, and any surgical options for treating mesothelioma. She researched and reviewed information about Dr. David Sugarbaker at Brigham and Women’s Hospital in Boston, Massachusetts, and his extra-pleural pneumonectomy with heated chemotherapy wash.

Despite the merits of this and other programs, it was the pleurectomy/decortication procedure performed by Dr. Robert Cameron of UCLA that caught her attention. Both the EPP and the P/D are radical procedures, but Susan preferred to keep both of her lungs and felt that she would be more physically suited to undergo and recover from the pleurectomy/decortication. For a more complete discussion of the issues faced by a patient deciding between the two surgeries, please click here.

Pushing on with a pleurectomy

At Susan’s request, her oncologist referred her to Dr. Cameron. She was immediately pleased with his patient-oriented attitude. She felt comfortable, and summarized her needs with great eloquence: “I don’t want a cheerleader with all the rah-rah stuff, I just want a capable and honest doctor who will help me fight for my life.”

After spending an hour and a half in consultation with Dr. Cameron, during which she learned about the statistics surrounding her disease, the P/D procedure, and her eligibility for it, Susan felt a mild sense of relief that her treatment was finally moving ahead.

Compassion and resilience

Despite having to steel herself for the rigors of major surgery, Susan evinced true concern for other patients facing the same predicament. She and Geri had been side-by-side since they were children, and have been married 43 years, with five healthy grown children and six grandchildren. They felt fortunate to have one another and to have their family. They supported each other and worked together to force a recalcitrant system work for them. They faced an HMO that refused potentially life-saving requests, a doctor who lost a crucial part of her file, and staffers irritated that a united family would dare to enter the doctor’s office together and bother to ask so many questions. Susan thinks about the people she knows in the association she runs and others like them — most of them elderly, many without families — trying to get medical care and the answers they need. With those considerations in mind, she says with righteous indignation: “God help them, they haven’t got a chance.”

Susan adds: “I was unfortunate enough to have been in the first medical group and very fortunate to have switched into the new group and to have had this new group of doctors respond so quickly and so effectively on my behalf. I was also fortunate enough to have a family member who could devote all her time to working on my medical issues daily and another daughter who could stay with me continuously for support and care.”

At the same time, she resents the asbestos-producing companies that put profit over people, and exposed her to asbestos through her husband’s clothing during his career as a machinist in the navy. She and Geri were planning to begin building a home in Maine this summer near one of their daughters, and to continue enjoying their retirement. With the onset of Susan’s illness, they had to put their retirement on hold. Susan is the rock of her family, a dedicated wife and mother who devoted her life and beautiful spirit to her husband and children. She is greatly respected and dearly loved.

“I’m only 62,” she says. “We had great plans, and I was so excited about the future. I am young, and young at heart.”

Beating the odds

Susan MacDonald planned to live. She is a resilient and strong woman who intended to fight back against the disease and win. She rallied in her own personal fight against mesothelioma, and did it with the resources and support of a fully committed family. Together, they sought treatment, trusted in prayer, and counted on the blessings of God to get them through.

Five years after her pleurectomy/decortication surgery with Cameron, and five and a half years after being diagnosed with mesothelioma, Sue MacDonald and her family recognize they have been blessed. She was originally given a fourteen month prognosis, provided she recovered well from the surgery and the follow-up radiation and interferon therapies. As of March 2007, she has made it 63 months past surgery, but more importantly, she is not just alive, she is living well.

While Susan’s health limits her ability to do some activities, she doesn’t hesitate to shop, go to the grocery store, or take walks on the beach with her family. Sue works out with a personal trainer twice a week for about an hour and a half, working with weights and limbering up her upper body. For a portion of that time she walks on a treadmill, as well and works on breathing exercises, too.

Every four months, Sue has a CT/PET scan to monitor the cancer, which has been completely clear for years now. She continues to see Cameron for follow ups. “Sue’s the one that holds everyone together. She didn’t go sit in the chair and say it was all over five years ago,” says Gerri, and “that’s why she is here today.”

Information about mesothelioma medical and legal options provided by the Law Office of Roger G. Worthington, P.C., www.mesothel.com.


CSU Chico memorializes Punch Worthington, champion of asbestos/mesothelioma victims

May 14, 2007

Chico Statements: a publication of
California State University, Chico

Spring, 2007

Devoted to Justice

David Hansen “Punch” Worthington (AB, Life and General Science, 1962, MA Biological Sciences, 1965) died Aug. 25, 2006 at the age of 70 from lung cancer as a result of asbestos poisoning. He spent the last ten years of his career as an asbestos investigator helping those afflicted with asbestos poisoning obtain justice.

Punch had a Ph.D. in genetics from Oregon State University and taught college science in the Pacific Northwest and Canada before retiring to pursue his true calling as a labor organizer and peace activist. Punch’s son David says his father bridged polarities within his passionately full life. HE was bot a U.S. Marine and a fervent protestor against the wars in Vietnam, El Salvador, Nicaragua, and Iraq; an accomplished bow hunter and an animal lover; a boxer and a cross-country runner; a scientist and a disciple of Native American mythology. “He embraced all flavors,” says David.

Punch organized pickets of the United Farm Workers, helped found the Veterans Caucus at Oregon State, helped build a hospital in Nicaragua with the Ben Linder construction brigade, and was founding president of the Salem Committee on Latin America. He fought against toxic smokestack emissions near Salem, Oregon, and participated in yearly “barbed wire roundups” to liberate ranchland in Eastern Oregon for pronghorn, coyote, fox, and other wild animals. As a self-decribed disciple of Native American mythology, he worshipped the wonders of the natural world.

Like lightning in a bottle, Punch just lit the world up,” says his son Roger.

Punch is survived by brother Jack, sons Norman, Roger, and David, and three grandchildren. For more information on Punch’s life and work, go to www.mesothel.com/profiles/punch_obit.htm.