“Our Lives Have Been Turned Up Side Down.”
Linda Louis first went to the emergency room at Swedish Hospital Medical Center in Seattle, Washington in October of 1997 because she was having chest pains and difficulty breathing. She was diagnosed, incredibly, with asbestosis -- although she was never a construction worker. In November, she went to the First Hill Medical Diagnostic Imaging where she had CT scans of the chest, pelvic and abdomen. The doctors found an abnormality that was suspicious for an active disease process, including neoplasm.
Linda's doctors recommended a pleural biopsy in order to reach a definitive diagnosis. Dr. Muramoto, a pulmonary disease specialist at the Swedish Hospital did a fine needle biopsy. The initial diagnosis was pleural mesothelioma. Linda was only 46 years old. She never worked directly in a metal or buildings trade. In view of the clinical picture, Dr. Bruce Kulander, a pathologist, wanted second opinion. He sent the specimens to Dr. Samuel Hammar of Bremerton, Washington for a second opinion. Dr. Hammar is widely regarded as a leading expert on detecting asbestos related malignancies.
Dr. Hammar performed a number of tests in order to rule out mesothelioma. All three tests revealed that the histologic appearance of the tumor was characteristic of an infiltrating epithelial neoplasm. The immunophenotype of the tumor was characteristic of an epithelial mesothelioma. Dr. Hammar described the results of his evaluation as follows:
"The majority of mesotheliomas that I see in women occur in those that have domestic bystander exposure to asbestos. In a woman who is this young, one would have to question to see what her father or perhaps grandfather did and whether she had any bystander exposure to asbestos while she was a child growing up. There also are cases of idiopathic mesothelioma that occur in women more frequently than in men. I have also seen mesotheliomas in about six women who have smoke Kent cigarettes between 1952 and 1956 which was the time period that the cigarettes contained about 10 milligrams in the filter which is referred to as a Micronite filter.
The other issue that always comes up in a relatively young person like this patient is what is the treatment for mesothelioma. There is no easy answer to that question, although in somebody this young, I think there would be many institutions who would at least try to stage her with respect to see if she would be a candidate for an extra pleural pneumonectomy. I know there is a surgeon now at the University of Washington who has teamed up with Dr. Doug Wood and is doing this type of surgery.
The other big centers in the United States that do extra pleural pneumonectomies are the Brigham & Women's Hospital in Boston (Dr. David Sugarbaker), Sloan-Kettering in New York City (Dr. Valeri Rusch) and at the NIH. The surgeon at the NIH (Dr. Harvey Pass) has recently moved to Detroit Michigan and I believe he is at Wayne State University. He is the other person in the United States that performs this procedure. As far as I know, there has never been a control trial to see if pleural pneumonectomy is more effective than conservative therapy. Despite this, I have reviewed cases on an estimated ten people who have had pleural pneumonectomies who are alive with no evidence of disease about four years after the surgery was done.
In general, prognosis is better in women vs. men, young people vs. old people, people that have good performance status vs. those that do not, and people who have epithelial histology vs. those that have either mixed histology or pure sarcomatoid mesotheliomas or pleomorphic mesotheliomas." (Emphasis added)
It was time for Linda to take action. She saw Dr. David Wood at the University of Washington, Seattle, Washington, on January 16, 1998, for a pre-operative evaluation. Dr.Wood ordered at CT scan. His impressions revealed a large right sided mediastinal mass extending from the apex of the right hemithorax to the level of the right hilum extending into the subcarinal region and prevertebral soft tissues of the lower chest. The test indicated that the mass crossed the midline and encircled three-quarters of the diameter of the aorta. The tumor also appeared to encircle the mid and distal portion of the esophagus and anteriorly displaces the distal trachea and carina. There was no evidence of airway compression. The right subclavian artery and vein appeared encircled by the mass. There was no evidence of subclavian vein obstruction. The mass abutted the upper and mid-portions of the trachea, approximately one-half of the diameter of the trachea.
On January 28, 1998, Linda had a medical consultation with Dr. Wood's assistant who reviewed the tests that she had completed earlier in the month. The assistant recommended against surgery because of the size of the tumor. He suggested that they attempt to shrink the tumor with chemotherapy and then try to remove the tumor. Dr. Wood was the team leader, however, and Linda was prepared to follow his advice. Linda and her family waited anxiously for the final word from Dr. Wood.
On Friday, February 6, 1998, Linda received a call from Dr. Woods at the University of Washington Medical Center, Seattle, Washington. She had been scheduled for surgery. Bright and early Monday morning, February 9, 1998, Linda, along with her husband, James, went to the hospital. The surgery was scheduled for 9:00 a.m. At 2:30 p.m. they wheeled Linda into the recovery room. Linda stayed in the critical care unit for two full days. She slept most of the time, waking only when the nurses and doctors came to check on her.
On Wednesday, she was given her first meal. Linda was having trouble with constipation and she was given Mexatrait to help. That was a mistake. She became violently ill with vomiting and diarrhea. All Wednesday night and through Thursday she spent going back and forth to the bathroom. She ran a fever. All of this with three (3) tubes in her arm. Because of her reaction to the medication, she was drinking Resource, a high nutrient fruit drink.
The three IV's in Linda's arm are cefazolin (an antibacterial drug), dextrose and dupanume. She states that she is getting stronger every day, but has not yet taken the "long walk " to the end of the hall. She was hopeful that when the doctors visited with her on Friday, February 13, 1998, they would give her permission to take the walk.
She told us that the doctors were able to remove 97% of the tumor. According to Linda, Dr. Woods is planning to treat the other 3 % with chemotherapy and radiation. She has been told that the surgical team was quite impressed with her stamina and strength during the surgery. There was no irregular heart beat or drop in blood pressure during the surgery or postoperative period.
Linda does not yet know when she will be released from the hospital, but she is busy making plans. Her sister and other members of her family are coming to see her this week.
Prior to her surgery, Linda shared with us her thoughts:
February 3, 1998
"I have a worried husband and daughter who are afraid of the possibility of losing me to this asbestos cancer. My husband has been searching the Internet bringing home article after article and he's been talking to different people when he learns that they know something about asbestos. Its not easy for them these days and it's not easy for me either. I say these things because they are true. I had an everyday happy home with laughter and smiles. When we all got together it was so good that one of my brothers had just came to live with us to get a better job for himself. You can't imagine how hard this was to lay something like this on him when he arrived. So now my whole family is worrying about me and I have 9 sisters and 2 brothers.
You know it's hard on me because I had been preparing to go to college to get some retraining for a different job and then I wake up with chest pains too hard too bare. So you go to the emergency room and you find this out that something like this has happened to you. And you are in shock and you want to know how could this happen to you when you never work with it or around it [asbestos]. And you have been going getting check ups regularly and why no doctor every found this in you or didn't they care. I can't stand talking about it I find myself crying all the time now and still trying to figure out why didn't these people care about my life and other people lives when they manufactured this asbestos stuff for people to work with.
I have a four year old granddaughter who I probably will not see grow up why because somebody didn't care about people like me and our health. Our lives have been turned up side down. I wake up sometimes at night to find my husband watching me as I sleep because I have breathing problems. We use to go jogging together. I can't do that any longer because just walking from my bedroom to the kitchen has me gasping for air. I use to run with my granddaughter racing her I can't do that anymore or push her on her training wheel bicycle that she got last Christmas or with her on the living room floor I can't do that anymore because I no longer have the air in my lungs to do these things like I use to.
So once again I have to pick myself up again and this time though I am fighting for my life. My husband and I are suppose to be looking forward to his retirement from the Navy and planning our long trips but now we are planning around whether I will be around when he retires. I am sad and hurt when I look at him and he's sitting down looking like he is in a deep thought with tears in his eyes. Then I have to think of something funny to say to him to snap him out of his frame of thought. My husband is usually a happy type of person and I would give anything to have that happy guy back again. Before this we had just did a family reunion in California with his family and his sister & brothers from Louisiana it was great we drove down. My family has one in Florida this July coming. Will I make it to go? I don't know. But I keep praying and I have turn it over to God."
We are pursuing the Louis' legal action in Florida, where she was exposed to asbestos that had contaminated her ex-husband's work clothing.
** POSTED FEBRUARY 17, 1998 **
Mrs. Louis passed away on February 14, 2000