Bonnie graduated from college with a dual degree in Elementary Education and Library Science in the year 1974 but could not find a teaching job because the Vietnam War had caused low enrollment in primary schools. At the same time, a local oil refinery posted advertised job opportunities for mechanics and Bonnie applied for the job.
She was eventually hired and became one of the first female industrial electricians in New Jersey.
She worked for around twelve years in the industry before she eventually got as a middle school librarian, which was in line with her initial love of working in a teaching environment.
Early in 2001, Bonnie began to experience severe stomach pain, diarrhea and other general symptoms. These were treated as irritable bowel syndrome. Treatment, which included anti-spasmodics and pain medication, proved ineffective. She underwent numerous tests: blood work, gynecological work-ups, a scope of her bladder, both upper and lower GI colonoscopy and endoscopy.
After performing the latter, her gastroenterologist suggested exploratory surgery, but the surgeon thought it unnecessary. A barium enema followed by an X-ray also revealed nothing.
Her primary physician referred her to another gastroenterologist, who ordered a CAT scan. The doctor noted some abnormal streaking on the scan, but other than suggesting a possible relationship to a complete hysterectomy Bonnie underwent in 1988, he couldn't determine its cause.
Finally, in December of 2001 Bonnie developed ascites which is excess fluid build up in the abdomen. Another CAT scan was ordered, and her gastroenterologist attempted to remove the fluid. Bonnie found the procedure too painful and the specialist had to end it before he was able to withdraw all of the fluid. Tests taken from the fluid did not reveal any cancer cells. But Bonnie was still in pain, and described the pressure as "horrible" and "unreal."
In February of 2002, her gastroenterologist sent her to a surgeon for a laparoscopy. The surgeon removed 6 liters of fluid and was able to see what he described as indoor-outdoor carpet spread all over the lining of the abdomen. Before Bonnie left the OR, he asked the hospital's pathology department to confirm that he was indeed viewing what he suspected to be mesothelioma. Pathology confirmed his assessment. Though he had been in practice for many years, the surgeon confessed had never seen mesothelioma before,except in a textbook.
When Bonnie woke up, she and her husband John received the news. Since they had never heard of mesothelioma, only the word "cancer" registered.
Though the process of arriving at the correct diagnosis had been so long and difficult, Bonnie's story then took a serendipitous turn, one that quite possibly saved her many months of searching before arriving at an effective treatment.
Her surgeon's partner had done his residency under Dr. John Chabot and he immediately gave Bonnie a direct recommendation to a team currently at the forefront of research and treatment for peritoneal mesothelioma, the team of pathologist and MARF Science Advisory Board Member Dr. Robert Taub and his treatment partner, surgeon John Chabot, both of Columbia Presbyterian in New York City. Dr. Taub visited Bonnie immediately, while she was still in the hospital seeing Dr. Chabot.
Later Bonnie saw Dr. Taub at Columbia Pres, and from slides acquired during the laparoscopy, Dr. Taub identified her mesothelioma cells as both epithelial and sarcomatoid. He informed her that generally, epithelial cells are less aggressive and grow on the outside of the peritoneal lining and organs. Sarcomatoid cells, he said, are woven throughout the lining like thread through a fabric. They are more aggressive, and usually considered to be inoperable. But because Bonnie had a mixture of the two types of cells, the team decided to try surgery.
At this point, in order to comply with her insurance plan's coverage, Bonnie sought treatment within her home state of New Jersey and saw two oncologists there. The physician considered to be the top oncologist in NJ informed Bonnie that his treatment plan would consist of one operation followed by chemotherapy with doxyrubicin.
With her investigative spirit Bonnie quickly discovered that patients treated in this program showed an 18 percent chance of surviving for five years. She also learned that doxyrubicin was an older medicine, introduced and tested fifteen years previously. Surely, she thought, there existed better, more current treatment than this.
She returned to Dr. Taub's protocol and the multimodal approach, which was reporting an approximately 35% four-year survival rate for those who successfully underwent treatment.
From Bonnie's insurance provider, Dr. Chabot got pre-certification to perform surgery on April 2, 2002. Prior to surgery she was feeling very apprehensive, and got the names of two other patients who had successfully undergone the same aggressive protocol with Drs. Taub and Chabot. During the initial surgery Dr. Chabot found no mesothelioma on her organs and no large masses, though little tumors were spread all over the lining of her abdomen like shotgun pellets. He also found that the cancer was not as advanced as the team had previously thought, so Bonnie's surgery took only one and one-half hours.
Dr. Chabot scraped out as much as he could of what he could of the visible tumor, removed Bonnie's omentum and installed the ports used to administer chemotherapy. While healing and waiting for the staples to be removed, Bonnie joked and kept her inquisitive attitude. "I have no idea what to expect minute to minute," she said. "I feel like I'm in Star Trek, going where I have never gone before."
Meanwhile, Dr. Taub had obtained the HMO's permission to begin chemotherapy. Bonnie began the first of eight sessions of a three week cycle: the first week receiving treatment for two days; the second week, treatment for three days; and the third week off. The three-week sessions consisted of Doxorubicin one week alternating with Cisplatin plus Gemcitabine the next. "You're just about feeling fairly decent when you had to start over again," Bonnie remembers.
When the sessions ended six months later, she began four weeks of gamma interferon, once per week.
At this point, right in the middle of receiving the treatment she and her doctors believed could save her life, Bonnie faced another enormous obstacle. Her insurance provider once more informed her they would not provide coverage outside of New Jersey. Bonnie's treatment with Dr. Taub had to be stopped. Again she considered the statistics she had been given: 18% survival rate versus 35% with Dr. Taub's second clinical trial. Of course, there was only one choice.
Bonnie, her husband, and her daughter Darcy mounted a "major campaign" to get the coverage she needed to complete Dr. Taub's protocol. They contacted their senators, congress-people, the governor's office, the Department of Banking and Insurance and every federal and state agency or advocacy group they could turn up. At last they found someone at the Department of Health and Senior services who would help arm them with the resources to convince the insurance company to cover Bonnie's case.
After directing letters, documentation, and phone calls from both Dr. Taub and her own primary physician to the insurance company, Bonnie arrived at a pivotal moment. She spoke in a conference call directly with a director and the appeals board of the insurance company. She told them if they didn't allow her to continue treatment at Columbia Pres, she was going to die. The appeals board said they would "take her case into consideration." Bonnie was shocked when she received their written determination: denied.
For three or four weeks she was in a panic, but still did not give up. Finally, Dr. Taub got in contact with the state-level director and was able to convince the company that all of the components of his clinical trial had already been tested; the only experimental element was that he had put the pieces together. At last the company acquiesced, agreeing to cover treatment partially at first, then completely with just a co-pay. Ecstatic, Bonnie was completely back in the protocol. She finished the cycles of chemotherapy, completing them in August, 2002.
Bonnie underwent the second surgery of the protocol in October of 2002. Dr. Chabot's observation indicated that everything looked well. He removed the ports and obtained four random biopsies. Of these, two showed no cancer cells, while two did. The surgeon was hopeful that the hot chemo belly wash would have flushed these two out. It wasn't until January that Bonnie was sufficiently recovered from the surgery to begin radiation. After five and a half weeks of radiation, Bonnie broke out in a rash that no one could identify and halted the treatment temporarily. She finished radiation in the beginning of March, 2003, and Drs. Taub and Chabot consider her to be in the 43% of those who will survive after completing the 2nd stage clinical trial.
Six months since she finished the protocol, Bonnie says she feels 100% better than she did a year ago. In April of 2003 she returned to her position as a middle school librarian and will be working again regularly this fall. "It feels so good to be back to work because I love what I do," Bonnie says. "I like to multi-task, I love to teach, and of course, I like research." Later this fall she is looking forward to returning to the other thing she loves to do: ride her quarter horse, T.J. She still gets fatigued easily, and she can't take the heat or the sun. But she says her energy is returning and her weight, which was down to 105 pounds during chemotherapy, has stabilized at 145.
Every three months she returns to Columbia Pres for a CAT scan, PET scan and blood work. In July 2003, her treatment team detected two activity spots in her abdomen, but other than that, no change or growth was visible.
Recently, in September of 2003, Bonnie attended the Race to Remember, a four-mile timed run or walk held in Mercer County Park, West Windsor, NJ. The event commemorates mesothelioma victim John Zipper and all others who have struggled or are struggling against mesothelioma, and raises funds for mesothelioma research.
Bonnie worked in the registration tent and made many wonderful memories of the event and of the people she met, including John Zipper's widow Karen and son Dan, the Race's creators.
"It was so terrific!" Bonnie says. "I got to shoot off the starting horn and I met the nicest people. It was a beautiful day." Right now, Bonnie affirms that "Life is wonderful!" She encourages other mesothelioma patients to believe that every minute is worth fighting for, and when facing treatment, to adopt a "Just do it! attitude."
"That's the way I've always lived my life," Bonnie says, and from the evidence, that is likely the way she will keep living for years to come.
Bello kamorudeen. http://www.mesotheliomacorner.blogspot.com