the journey i never asked for

I'm writing this because I want to share my own cancer journey with meosthelioma. I want to give others hope, some guidance from my experience and anecdotal stories as a bilateral, peritoneal/pleural BAP1 mesothelioma patient. Don't worry if you don't know what that means. I'll explain in time. Before my own diagnosis back in April 2021, I had never heard of the disease. I did not know anything about it; not even from late night commercials which apparently is a thing but I don't watch late night TV.

If you are reading this, you likely have the disease or are affected by it and are looking for some hope or guide posts to a fairly bleek situation. There is hope! I'm writing this in Feb 2026 so I can say I'm almost a 5 year survivor with no active treatment since Dec 2021. I was told I was stage IV and had 12-18 months to live. I had cancer in 3 locations to make it worse. It was in both lungs and a touch in my abdomen aka peritoneal so that was even more depressing because I was like wow, I'm triple screwed! But here I am alive and daresay thriving. No treatment doesn't mean no incidents. I have had several procedures aka surgeries for collapsed lungs and surveillance. So feel free to read on and I hope my journey will help your own.

I think its important to share what led up to my diagnosis because one of the challenges of mesothelioma is just diagnosing it properly. Its a rare disease that affects only about 3,000 new patients annually in the US. By comparison, the top 3 cancers are breast cancer (324K annually), prostate cancer (330K), and lung cancer (229K). Guess what? Lung cancer is the #1 killer in cancer and kills more people than colorectal and prostate cancer put together so its not joke. You see that mesothelioma is less than 1% the size of breast cancer and only 1.3% of all lung cancers. You can see why just by rarity that doctors struggle to diagnose it because they simply don't see it. The thoracic lung surgeon who suspected my diagnosis second guessed himself because he told me he only sees 1-2 patients with mesothelioma every 2 years. You can't recognize what you don't see regularly. They sent my biopsy (tissue samples) to two places of pathology to make sure it was correct. (Hoag and Mayo Clinic). Even then they were not totally sure.

So how did this come about? I'll share more in my next post because I gotta go to church right now. Its Sunday and I am more into "making the news" than just "reporting the news" so to speak at this point in my life.