For those following my journey, you’ll note that I haven’t posted in quite a number of months. I apologize for the hiatus and hopefully I haven’t worried anyone unnecessarily.

The long break has actually been a good thing. I’ve been doing really well and have been busy living life. Everyday life with all its celebrations and challenges, appointments and commitments, fun and frustration. The same balancing act that existed long before my diagnosis. Which is actually something I’ve been thinking about a lot lately – how little most of my life has changed. It’s made me realize how lucky I am to have a life I truly love day-to-day. At the same time it’s made me question why I haven’t made bigger changes in some areas of my life given such a life-altering event.

More on that in a bit. First, health updates and what’s new in the world of NET Tumors.

In April I finally got insurance to approve an appointment with Dr. Eric Liu, one of the premier Neuroendocrine specialists in the nation. He’s on the cutting edge of treatment, writes and speaks on the topic, and really knows his stuff. People fly from all over the US to Denver to see him, so I feel incredibly lucky that he’s just right up the street. A funny, and truly caring individual, Dr. Liu really took the time to explain my situation and his recommendations for a care plan.

The biggest goals right now are to keep things from progressing and keep the tumor load in my liver low. Currently, if you were to remove all the tumors, it would be a tiny handful, leaving lots of healthy liver in action. The plan right now is to stay on my injections, have a fairly major surgery in a year or two to remove as many tumors as possible, and then move to a targeted therapy like PRRT to handle the smaller tumors as needed.

Dr. Liu explained how this cancer is fairly unique in terms of timing. For the most part, doing something now vs 6 months from now vs 1 year from now makes very little difference. I will of course be doing everything I can as quickly as I can, but feel fortunate that we really can make calculated moves with plenty of advance notice. His cautious but optimistic prognosis is 20-30 years based on current technology. I’ll be working towards extending that much further, but for now I’ll take it over the 10 years I was originally given.

I had an echocardiogram that showed a very healthy heart, healthier in fact than they typically see in 45 year olds. This is great news because the chemicals released by the tumors can go after heart valves when they’re not under control. Speaking of control, my Lanreotide injections have brought most of my markers back in line. All except the serotonin which has come down progressively and will hopefully continue to drop back into normal ranges.

My symptoms have been fairly under control, especially toward the middle weeks of my injection cycle. Lanreotide is basically a long-lasting synthetic version of a naturally occurring chemical in the body that helps control the release of other chemicals like serotonin. When my chemicals are balanced, my stomach feels good, there’s no flushing, and overall I feel more “normal”, or at least what I remember as normal from 10+ years ago.

I continue to educate myself and read-up on how to live the healthiest lifestyle possible. I’m continuing to surround myself with great people, great energy, and great information. It’s been fascinating to learn how NET tumors secrete extra chemicals your body already creates naturally, an odd behavior that accompanies and odd cancer.

There have been some expected bumps in the road. A continued fight with health insurance and a double-appeal/rejection on an an additional medication that could help bring my levels down quicker. Also, I’ve learned that the day after my injection typically means I’ll rarely leave the bathroom and struggle with super-low energy and a headache as a result. Most people seem to leave this side-effect behind over time.

Last week I started to see a therapist – I’m really excited to have someone help me navigate my nonstop stream of thoughts. I’ve been a self-help junkie since high-school and I’m always striving to work on making myself a better person. I tend to be an over-thinker, over-researcher, and over-analyzer (no shock to those that know me well). Adding cancer to the mix has only made my brain speed-up more, getting lost in thought and making it harder than ever to be truly present.

One of the things that’s shocked me most about my diagnosis is that I haven’t made many radical changes in my life.

On one hand, I really think it’s because I’ve worked hard to build a life surrounded by incredible people, amazing adventures and energizing environments. I’ve had a much greater appreciation for the little things, the things we can all easily take for granted. I’ve learned to really try to savor small moments, no matter what they are.

With that said, I still spend a lot of time focusing on things that don’t really matter, things that cause anxiety, and adding complexity where I should be simplifying things. I thought (and had always heard) that a cancer diagnosis would change my priorities and focus overnight, adding calm and clarity along the way. The reality is, I still worry about things that I shouldn’t, spend time on things that don’t bring me joy, and have a hard time prioritizing what really matters. I suppose this is all part of being human, but I’ve really been surprised by my inability to make the changes I’d like to see.

Instead of layering on expectations of how things should be (my default behavior), I’m trying to be curious instead, finding and examining what’s holding me back and what I’m actually afraid of. Combining that curiosity with action – something I’m often slow to take – is where I’m focusing my efforts. I’ve found that writing things like this blog (even when I feel like I’m rambling) help me process my thoughts and realize that I’m not alone in this crazy journey of life.

My thank-you’s for this post go out to Tammy Oler, Amy Long, Jennifer Grubb, Warren and Jane Turnis for giving much-needed friendship, advice and support as we navigate all life throws at us. Erin Pheil and Josh Petrucci for being awesome people and for the great work Erin’s doing with MindFix. Sam Minneti for always listening and being able to track my ramblings. And of course to my wife Jenny and my family for their bravery, positivity and love on my journey as well as their own.

I hope to connect with more of you for coffee, drinks, calls, or just a hug in the near future. In the meantime, I’ll keep-on-keeping on, hoping to bump into all of you while we’re all out there living life the best we know how.