Dear Friends and Family:
We wanted to let you know that Don has been diagnosed with Neuroendocrine Cancer. This is an uncommon, low-grade, slow-growing cancer, that in his case started in his small intestine (we think) and spread to his liver. We had never heard of it before early March, but have learned alot since then.
The good news: Don is feeling fine! This was found by accident and if it has not been found, we would have no idea. It was a blessing that we found it now, as this disease often goes misdiagnosed for years and written off as basic gastro problems.
Neuroendocrine cancer is an uncommon form of cancer; more like a chronic illness. Many neuroendocrine cancer patients live many years – even decades – managing this disease. Whatever you may know or may have experienced with more common cancers does not apply to this disease.
Don will be getting monthly shots in his bum for the near future; perhaps the rest of his life. This treatment is not chemo and there are few, if any, side effects. He will probably have some abdominal surgery at some point this year. We will know more in a few weeks after some more tests and a couple of 2nd opinions.
Unlike other cancers, he may not ever be cancer-free. But he can still live a long life with this disease. He does not have an upcoming expiration date (anymore than the rest of us do).
For now, you can help Don and our family by treating us NORMALLY. And I promise to let you know if we need anything. Don isn’t ready to be “sick” anytime soon and with proper treatment, he may not have to be anytime soon (years).
So, you get the idea. Don is doing well, feeling well, and fully expects to be with us for a long time. This disease is not contagious. The boys know and continue to be brave and supportive. We are the same people we were 10 minutes ago, before you read this.
I will be sharing updates about our experience on the cancerland roller coaster here on this blog. I will also post some back-dated entries (never public before now) that will catch you up on the last month.
We cherish your love & support!