Learning To Smile Again

Fourteen months ago, 54 year old executive Vito Bell was living the good life in Alpharetta, one of the tony suburbs north of Atlanta, Georgia. He worked hard and earned enough, enough that his lovely wife Jackie didn't have to work, but instead could donate her time to the junior high and high schools part-time, to keep an eye on their daughter and son. Enough for his eighteen year-old daughter's out-of-state college tuition. Enough for a weekend cabin in an eight square mile gated community, right next to a golf course, 2,000 feet above sea level in the Blue Ridge Mountains.

He earned enough and he worked hard, but not so hard that he didn't enjoy his family and his life. On the contrary, he lived life to the hilt. Vito and Jackie were both level 4.0 tennis players, members of both the United States Tennis Association and the Atlanta Lawn Tennis Association. They played three times a week, a couple of hours at a time, with matches on Saturdays. Vito golfed about once a week. They got away on weekends to the cabin, went trout fishing and cocooned with their children.

They raised their kids the right way, with discipline and with love. Their kids know how to ask permission, and how to obtain it. They are beautiful, well-mannered children.

Fourteen months ago, life was beautiful, until a day in January. Vito noticed while he was playing tennis that he was experiencing pain in his right chest area. He went to see his general practitioner, Dr. Guttschenwriter. Dr. Guttschenwriter referred Vito to a pulmonologist, Dr. Paul Scheinberg, who took chest films and scheduled a thoracentesis. The thoracentesis produced about 500 ccs of fluid. He was referred to a thoracic surgeon, Dr. John Moore, who scheduled decortication surgery at St. Joseph's Hospital in Atlanta.

Based on this information, Dr. Moore felt decortication surgery would eliminate "open spaces" in the chest wall which can cause pleural effusions. During the surgery on March 8, 1999, Dr. Moore discovered a tumor on the lining of the right chest wall. He took a biopsy sample for intraoperative frozen section analysis, which preliminarily indicated mesothelioma. Pathology confirmed the diagnosis two days later of epithelial malignant pleural mesothelioma.

After the diagnosis of mesothelioma, Dr. Scheinberg referred Vito to Dr. Daniel Dubovsky, an oncologist, who in turn referred Vito to Dr. David Sugarbaker at Brigham & Women's.

The Bells met with Dr. Sugarbaker on March 23, 1999. After determining that Vito was an appropriate candidate for tri-modal therapy, his associate Dr. Michael Jaklitsch performed the extra-pleural pneumonectomy (EPP), removing a portion of the diaphragm and the pericardium, and the entire right lung. Dr. Jaklitsch also administered a "hot chemo belly wash" intraoperatively.

There was no node involvement; Vito was Stage I. The pain after the surgery was "incredible." Vito spent the good part of a week in the hospital. As a direct result of the surgery, Vito also suffered soft tissue damage to both shoulders known as capsulitis. As he explains it, during the day-long surgery, his right forearm was flopped over his head, pointing to his left, while the surgeon "filleted" his chest to spread him open. The positioning left him unable to raise his arms above shoulder level, to hold out a glass of water, or to flick a light switch. In addition to everything else, Vito had to endure six months of painful rehabilitation for his shoulders. Only with great effort has Vito gotten his shoulders to about three-quarter capacity.

Eight weeks after surgery, Vito underwent five weeks of concurrent radiation and chemotherapy. This was another experience Vito would just as soon forget.

Vito's life was beginning to resemble the story of Job. Two months after surviving the ordeal of radiation and chemotherapy, his corporate employer offered him relocation to Chicago, or involuntary termination. Vito was given a week to decide. Even if Vito could have physically handled the move and new job duties, the Bells could not contemplate moving their children again for the company. Vito declined the job offer, and was fired.

The Bells put on a brave face, but as Vito told me, "I don't smile anymore. I have to be reminded to smile." His face clouds over as he thinks of his daughter in college, of the son who would follow her on graduation, of the daughter who would follow her brother on his graduation (meticulous planners, the Bells!). And he thinks of Jackie -- his wife and best friend. All Vito ever wanted to do was nurture and provide for the family he loves.

Now he feels that they are cast adrift, in uncharted waters. Vito looks well, but he weighs 20 pounds less than he did before falling ill. Night sweats leave the sheets wet in the morning. He suffers from constant pain along the incision stretching from under the right nipple to beneath the right shoulder blade. He doses himself with Percocets, Darvocets and Advils to keep the pain at bay, but the pills make him feel "different", to say the least.

But Vito is not a complainer, and he's not a quitter. He attacks his disease proactively. He has gone out on the tennis court and hit balls, even though the pain along the incision is excruciating. He searches the Internet and other sources for the latest in treatment options. He understands that the goal of his surgery and adjunctive therapy was to prolong his life until more effective treatment could be found. The Bells have nothing but high praise for their doctor, Dr. Jaklitsch.

We wish the Bells the best in their journey over troubled waters.

*** POSTED MARCH 22, 2000 ***

An Update -- 1/31/01

Vito Bell recently had a 90 day check up. He had a CT scan taken as well as undergoing a thoracentesis. He is awaiting the cytology results of the thoracentesis. It has been approximately 19 months since his surgery, and Vito states he plans on "making another 19 months!"

Here's to 19 more months!

An Update -- 8/9/01

Vito recently passed the two-year mark since his surgery. Today, he is using his energy to continue the fight against his disease and to ensure that his family is secure. With a daughter finishing college, a son completing high school, and his youngest daughter entering high school, Vito would like to hang around to see his children take on and succeed in these landmark stages in their lives, and he's doing everything within his power to make certain that happens.

Since his surgery, Vito has participated in a Protocol Program at Brigham & Women's Hospital in Boston. The program is simply a thorough and well-monitored follow-up program to the experimental "hot chemo belly wash" that he underwent during his EPP surgery. When Vito returns to Boston every three months for one of these Protocol check-ups, he undergoes a CAT scan, X-ray, EKG and thoracentesis, and the doctors who were part of his surgical team note his vital statistics and medications. The good news is that since he has passed the two-year mark, he may now save on airfare, as he is required to return to Boston every six months, instead of three.

The second measure that Vito is taking to continue the fight is something he refers to as a "Godsend," and it comes in the form of a pulmonary therapy program at Northside Hospital in Atlanta with John Nydam. The purpose of the program is simple - through exercise, build up, strengthen and expand the capacity of the remaining lung in order to compensate for the loss of the other lung. He began the five day-a-week, six-week program last summer at the hospital, and is now continuing the therapy from his home. Every day, he attempts to run on a treadmill and/or ride the exercise bike. As he can no longer work due to the mesothelioma, Vito does have the time to focus on this therapy, and is hoping that it continues to be rewarding. He does provide one word of caution, however. This therapy is not for patients who are still in their first year of recovery from EPP surgery. The body simply has too much to do to recuperate in that year. After that year, however, don't be afraid to look into it.

Vito knows what he is up against. He does not have enough energy to ever work again, and the fact that he has a family to support looms over him. He does still endure pain, and despite the therapy, it will always be harder to breathe, something especially noticeable with the withering heat of summer, when he is confined to the house and a flight of stairs is a real chore, instead of a thoughtless task. Weighing more heavily on him is something else "This disease is funny. I know that in six months, I might just be another pleasant memory."

Still, he pushes on, and looks ahead. As Vito also said, "You have to get your hands on this disease or it will get its hands on you."

An Update -- 7//24/02

Vito Bell continues to improve his cardiovascular level by walking on a treadmill.

Since his EPP in Boston, he has volunteered to speak to other mesothelioma patients about the EPP. As Vito explains, "it is one thing for a doctor to describe the steps of the procedure; it is another thing for someone who underwent the procedure to reassure you that you will survive and what you will go through in order to do that."

Vito estimates that he speaks with one or two potential patients in a month, and that, more often than not, he is able to alleviate at least some of the stress they suffer. We will keep you posted on the progress of this patient and reciprocating man.

An Update -- 8/21/03

Vito is continuing to do well. He is scheduled to see Dr. Jaklitsch at Brigham & Women's on October 21st for his routine follow-ups. He has not required any treatments since his surgery. He is continuing his physical therapy for pulmonary rehabilitation which helped him learn how to live with just the one lung. Vito still golfs a little but can no longer play tennis. He has a lot of trouble with the heat during the summer months.

An Update -- 7/27/04

Vito is still doing very well, he is now down to annual check-ups, his next will be scheduled for sometime in October. He's feeling healthy. He is on a five-times-a-week workout regimen recommended by his pulmonologist, and continues to golf. The Bells welcome calls from others interested in sharing their own experiences. According to Jackie, "the results of the litigation was of course more than we imagined but most importantly literally changed our lives for the better - Vito's treatment options were broadened and he was able to retire without any financial woes (as he should)!"

An Update -- 4/30/09

Vito is a miracle man. 10 years after having discovered he had Mesothelioma he is "doing pretty well" and living life to it's fullest. Vito still enjoys a game of golf once or twice a week. At this time he is not in any type of treatment and he is happy about that.

"It's a nice feeling to be able to do this well after a diagnosis of meso and the surgery that came with it". He feels blessed to have the life he does and is grateful to the doctors that made it all possible for him.