The title above, “The Journey Begins” is the default page that WordPress sets up automatically when you start a blog . Serendipitous probably isn’t the right word, but it sure is fitting given the nature of this blog. So I’ve decided to leave the title as is and take the first step in this new journey.

Jenny and I have a saying that we’ve adopted at Design Rangers and in life – Always an Adventure™. I never thought this would be the type of adventure I’d be embarking on, especially at 45 years old, but I suppose no one ever does. The “adventure” at hand? Living with, managing, and fighting cancer. Typing that word, much less hearing it and understanding what it means is difficult beyond comprehension. My first instinct is to backspace and erase that word. Find a different word, a better word, a less scary word. But I feel like to fight it I have to be OK saying it. Not necessarily to accept it, but not to deny what it is either.

The diagnosis

My official diagnosis is carcinoid syndrome. Carcinoid tumors, also known as NET (neuroendocrine tumors) that have spread to my liver. These tumors cause a spike in naturally occurring chemicals in my body like serotonin that can be damaging to other parts of my body. At one point, the symptoms were likely masked – filtered out by my liver as they were produced. Now that they are in my liver, that’s no longer the case.

It’s been a long road to get to this diagnosis, and with good reason. This disease is rare, much more rare than I had first thought, and produces incredibly vague symptoms if it produces any at all. To learn more about how rare it is, my diagnosis and the Google search that led me there, read my next article – The Prequels.

To make that long story short, I’ve had a series of blood tests and scans over the last year and half that have led me to this point. One of these scans identified a small tumor just outside my small intestine behind my bellybutton. That tumor, identified as a carcinoid tumor, was successfully removed in September of 2018, and we breathed a sigh of relief as we thought we were past the worst of it, needing to only go in for check-up scans a few times a year.

Unfortunately, my symptoms persisted and a blood test a month after surgery showed that my serotonin levels were still 10x normal, almost identical to my results pre-surgery.

With new specialists now involved, a very new, much more sensitive scan created specifically to pick up NET tumors was ordered. This scan has only been approved by the FDA in the last two years and can only be performed in major cities where a local lab must get the radioactive injection created and in your body within one hour.

On Tuesday, December 18th, one week before Christmas, we received the news. One tumor in the small intestine, likely where this all originated from, and upwards of 20 small tumors in my liver. A moment still frozen in time. One where you try to wake up but realize that you can’t. Shell shocked, confused, scared and sad, we went thorough the motions and grappled with what exactly all of this information meant.

Looking on the bright side

The good news? Carcinoid tumors are typically extremely slow-growing and treatable, although not currently curable in the liver. Research and medications have come a long way and the shots I’m on (Lanreotide) have only been FDA approved for two years. The shots, given every 28 days, are designed to block the fuel for the tumors and restore chemical levels to normal. Since it’s not chemotherapy it doesn’t come with the nasty side-effects. My chemical levels should decrease, my symptoms subside, and my tumors should stop growing and hopefully even shrink. There are some surgical options to target larger tumors along with many promising clinical trials and experimental medications, many of which are close to being approved. Like my specialized scan, research is working to target the cells in these tumors directly with isotopes to destroy them.

In the good-news-but-doesn’t-always-feel-like-good-news category, treatment is typically well received and people can live very normal lives for many, many years. What does “years” mean? That’s a great question and one that seems to be changing in this type of cancer all the time. After a lot of pressing, my oncologist threw out a 10+ year number, which was both encouraging and like getting hit with a ton of bricks. Many trusted resources talk about decades and that’s what I’m aiming for. 55 years old is not nearly enough time to do everything I need to do in this life. So the goal is to stop progression and buy time for new treatments to come into play.

Then there’s my beyond-amazing wife Jenny, my kids, my friends and family who are all right by my side with love, prayers, resources and caring. I’m humbled by the outpouring of love and support.

Plotting a path

So here I am, at the start, scared, but ready to take the first steps. I’m ready for the next adventure, and to see all of you in my travels. I know above all else that I’m not alone on this journey.