July 13, 2004

How Meso came in to our lives

John was 37 years old, I was 29. John's daughter was 6, our son was 3 1/2 and our baby girl was almost 1. It was 1993 and John laid on the couch unable to breath without being in pain. I finally talked him into going to the ER and we were told that he had pnuemonia. Antibiotics were perscribed and a week late we were back in the ER because he was worse. The doctors decided to tap his lung and drain the fluid. Tests run on the fluid showed up negative so the doctors thought nothing more of it. One year later John was back in the ER with breathing problems again, same situation as the year before and then nothing again for another year.

This went on until 1998. John got pneumonia twice in 6 months and this time the doctors decided to talc his lung to the chest wall to prevent more fluid from building up in the future. Up until this time, they had tested the fluid everytime they removed it, did X-rays, CT scans, bronchoscopies, etc. Nothing ever showed up as abnormal.

June 12, 1998, John went in for surgery. We were nervous, but optomistic as the doctors told us that since nothing showed up on the scans previously, we didn't have anything to worry about. The surgeon along with the pulmonary specialist we had been working with for the past five years came in after the surgery was complete. The pulmanary doc grabbed my hand as the surgeon began to tell me that they found mesothelioma in my husband.

I just remember shaking uncontrollably, crying and asking the surgeon if they could fix my husband. He told me that John would have 6 - 12 months to live and that I should take him home to prepare for him to die. The entire time, the pulmonary doc was holding my hand and crying right along with me. After the surgeon finished talking, he handed me a picture of my husband's infected pluera and walked out. I ran out of the room, past my mother-in-law and sister-in-law right in to the ladies room. I thought for sure that I was going to vomit. In that room was the most wonderful nurse I had ever met. She grabbed me and held me right at the sink and let me sob in her arms. On this day, June 12, 1998, eight days before my 30th birthday, I was told that I was going to be a widow. I was sad, angry as hell and a whole list of other feelings. I couldn't go see John right away until I knew I could be strong enough for him. All we could do that night was cry really. We held strong and decided who would need to be told right away and who could wait. He spent time with his family while I made phone calls to his daughter and other friends.

The very next day brought us another option. I decided to get on the internet and John decided that he didn't like what the surgeon had to say and decided to ask for a referrel to the Rochester Mayo Clinic for a second opinion. At that time, the internet provided very little hope for finding any survivors of this disease. The small handful I did find had already lost their loved ones and in a very short amount of time. I tried for about a year, occasionally getting into cancer support chat rooms and still had no luck. After about two years, I gave up looking.

Mayo Clinic opened up a whole new world of hope for us. A radical surgery, chemo and radiation and John's life expectancy was moved up to 40% chance of surviving over 5 years. John decided it was worth the risk. July 31, 1998 was the date and we were both very excited yet very scared about what lay ahead for the both of us. With the kids set up with family, John and I made the 1 1/2 hour drive to Rochester, Minnesota and got ready for our lives to change.

Posted by Jeanette on July 13, 2004 02:44 PM

Dear Jeannette,I am interested in hearing the rest of your story, as you are able to share it.My fav uncle was given 3-6mos to live due to Meso. though at the time we didn't know what it was, other than it was a different kind of lung cancer invading the plura , not smokers' cancer. (he worked at whirlpool and wrapped water heaters with fiberglass insulators for a few years). He was 33. He beat the odds. He actually experienced remission and healing several times. He would not give up hope. He had a new baby boy that he wanted to KNOW his Daddy!We lost Jim about 5 years after dx. He was too young.Hugs and Blessings, Judy

Posted by: Judy in AZ at August 10, 2004 11:08 PM