This is what John had. This is what killed him. Asbestos was the weapon.
Textbook or google says malignant peritoneal mesothelioma is a rare type of cancer that occurs in the thin cell walls surrounding the abdominal cavity, known as the peritoneum. This thin membrane acts a lubricant within the abdominal cavity so that surrounding organs and internal body structures may contract and expand within their normal body function. Incidence of peritoneal mesothelioma is quite rare, and typically presents in less than 500 individuals in the United States each year
When he was diagnosed with mesothelioma, my life changed and I can never look back on it the same way. When I was told this is genetic, my life changed and I can never move forward the way I thought I could. The term “new normal” doesn’t apply to me. I will never have that. Normal life, normal thoughts are in the past. I will never have a normal day. My husband died of this. Our daughters might die of this. This awful, painful, unforgiveable, death.
The thought that this is what Izzy and/or KitKat can have, physically and emotionally paralyzes me on a daily basis. Everyday, I have to sit and just wait for the pain, anguish and shock to go away and for the bad thoughts to leave my mind. I just can’t believe this. Why them? What did they do?
When KitKat grabs her stomach and says “My tummy hurts” I freak out. She does this almost everyday and has been doing this since she was a baby. Like John, she has a weak stomach- and like John, even as a newborn. Even before we brought her home from the hospital, we talked about how she was just like him…what does this mean?
When I see Izzy’s tan but a thin white mark on her nose, I watch…now there is what appears to be a bump at the end of this mark and I keep an eye on it and will talk to the pediatrician soon. John had a few moles removed on his nose so I worry. What does this mean?
Mesothelioma is not thought of as genetic. The hematologist said he will be gathering a team of doctors and Izzy and KitKat will be monitored the rest of their lives for this. John was on the phone when we found out this was genetic. I don’t think he understood what the doctor said and I never spoke of it with him because if he understood, I think that would have killed him on the spot.
I always thought John would outlive me. I was prepared for it, actually. Heart attacks run in my family fairly young. I have high blood pressure and take medication for it. Now that he is gone, I have to live a long time (who doesn’t?), I have to live to see our children go to college, fall in and out of love, marry, have children and watch their children grow up. I have to live because if they are diagnosed with this then I will take care of them. I will wake up every three hours to give them their pills, I will bathe them, give them their shots, comfort them, drive them to the hospital, and love them-no matter what…just like I did with John. I will fight for them to live. I have to live long enough to fight for them that they don’t get this.
Part 2 will be very graphic. I am still working on it. It’s very hard to write down even though I think about different details everyday. This is what he went through. His body and mind. His lack of health care. The wait for things to happen and the disappointment when it didn’t. Signs he had cancer that went unnoticed. These things need to be put on the table and talked about.