Your browser (Internet Explorer 7 or lower) is out of date. It has known security flaws and may not display all features of this and other websites. Learn how to update your browser.

X

Navigate / search

World NET Cancer Awareness Day

Today is Worldwide Neuroendocrine Tumor Awareness Day. Thank you for taking the time to follow my blog and be a part of my life. Just by doing so you already know so much more about NETs than the average bear.

Steve Jobs of Apple; Dave Thomas, the founder of Wendy’s; and Derrick Bell, the famous black Professor of Law at Harvard,  all passed away from Neuroendocrine Tumor or Carcinoid.  Unfortunately, there are other famous people and numerous not-so-famous people with NET/Carcinoid, that probably don’t know it, yet, due to not experiencing symptoms, or from being misdiagnosed.

You can learn more about this disease by visiting carcinoid.org, and help spread awareness throughout the year by writing the words: “Neuroendocrine Tumor/Carcinoid Cancer” when you contribute to wonderful organizations such as “Relay For Life,” that do not acknowledge this rare cancer.

As for me, I’m still fighting off a cold that has taken advantage of my compromised immune system. All things considered I’m feeling okay after my last treatment, just incredibly tired and run down. I had my usual gamut of follow-up lab work yesterday. On Monday I start my regimen of 3x-a-day injections of octreotide that will last until Kathy and I return to Houston for Round 3 on December 4th.

Take care, and as always, thanks for visiting.

RIP Steve

I fell in love with Steve Jobs in high school. Well, not Steve per se, but Apple Computer. That was when I first got my hands on an Apple II in math lab. I carried 5-1/4 inch floppy disks in my PeeChee folder like they were gold. Over the years, and after owning so many Apple products I’ve lost count, my affection for Steve and all things Mac has only grown. I’m proud that the bottom of every page on this website says “Made on a Mac”.

So when I found out a few years ago that Steve Jobs was suffering from the same rare nasty form of cancer that I have I was devastated. It’s widely misreported in the media that he had pancreatic cancer. I can understand that since everyone is accustomed to hearing those words and knows how serious that diagnosis is, so it’s easier for the public to digest. In fact he had neuroendocrine tumors (NETs), with his primary tumor in his pancreas. Because his cancer started in his pancreas it wasn’t called carcinoid, like mine which started in my small intestine, but it’s the same cancer – just a different organ. Like most NETs his metastasized to his liver, and the rest of his story has been fairly well reported. I actually applauded during a report on CNN last night when a doctor correctly said the words “neuroendocrine tumors”.

Many of us in the NETs community are conflicted about Steve. I know that my fantasy was for him to hold one of his iconic press conferences and announce, “I have NETs and I’m investing a billion dollars of my own money to find a cure!” At the very least we hoped that he would open up and share the details of his own battle, becoming a flag bearer for our cause. Yet I can well understand why he didn’t want to be that guy. I know how difficult it was for me just to start this website and “go public” with my own story. I empathized with his plight.

It’s really hard for me when someone I know succumbs to carcinoid. When someone larger than life loses his battle it’s no less traumatic. Rest in peace Steve, you will be missed.