I’m finding that updating a blog like this is an odd exercise. What do I share? What’s important vs mundane details for my own personal mental snacking? Rather than using that as an excuse, I’ve decided to just write, which if you know me, is not easy. I like to have a plan. A story. A well researched and thought-out idea. Oh well. New adventures are all about getting outside of your comfort zone.

How am I feeling?

This is probably the question I get asked most. The truth is if you saw me day-to-day, you’d probably have no idea that anything was wrong. My life is pretty normal for the most part and I’m really grateful for that. Sometimes my stomach acts up – some bloating, nausea, diarrhea (my 12 year old self is cracking-up that I just wrote that on a blog), but most of that has been happening for years, so I’ve gotten fairly used to it.

The injections I’m on seem to be well tolerated, with a little dizziness from time-to-time and a bit of stomach discomfort for the first week or so after I get the shot. I just had my second injection and I’ll continue to get them every 28 days. The injections themselves are basically a shot in the upper part of my butt, wherever they can find the most fat. My bony butt isn’t really helping the situation, but they’re managing to find something to work with. It’s a thick substance and they have to go slow to avoid extra pain. Luckily it feels like a normal shot, just over the span of a minute or two with your pants down.

Symptom-wise I’ve only had two episodes of flushing, although my last blood test shows that my serotonin levels haven’t really gone down at all. Now that I’m more aware of triggers and potential foods to avoid, it’s easier to just steer-clear of things that could cause problems. My stomach has been all over the board, but again, that’s nothing new. As I’m typing this my stomach has been feeling pretty darn good over the last few days.

I’ve been riding my bike when the weather allows, getting out for walks, and keeping up with the weekly schedule of work, errands, kid, family and work commitments, etc. Like I said, pretty normal overall.

How am I feeling mentally? That one’s a bit trickier to answer. What I’ve researched and learned that day, how I’ve slept, how much I think about things and what’s happening as I navigate the healthcare system all factor into my mental state. For the most part I’d say I’m really optimistic and happy with punctuated moments of sadness and anxiety. I think we’re finally past the initial shock of everything and it isn’t a constant distorted lens that we’re looking through like it was the first few weeks. UC Health offers counselors as part of my treatment, and I know I’ll be taking advantage of those services as soon as I feel like the medical side of things is fully on track. Keagan has an amazing full-time counselor at his school and Jenny and I have been totally honest with each other about how we’re feeling at any given time.

Keagan had a 16th birthday, we’ve been doing great work that matters at Design Rangers, we’ve gone to some comedy shows, a concert, and I’ve had meaningful conversations with so many people over the last month.

What’s really driven my positive attitude is family, friends both near and far, community, as well as people who barely know me. The love, support, kind words, gestures of care and time have absolutely blown me away and I’m humbled by it every day. If there’s one thing I’m absolutely certain of it’s that I’m surrounded by tons of amazing people who I’m lucky to have in my life. Thank you everyone for your love, prayers and laughter.

Treatment plan

I’m guessing that my treatment plan will evolve over time as we learn more about my baseline, how I’m responding to my current treatment, and new options that come online. I’ll receive one more Lanreotide injection in a month before getting a new scan to see how the tumors are responding. Everyone I’ve talked to and all the current research seems to say that what I’m doing is the best initial course of action. I go to see my Oncologist on Monday to discuss the latest and talk more about my blood levels and what I should expect.

In the meantime, our longtime friend, chef Corey Wilson connected us with his mother, Mary Ann, who has carcinoid syndrome (what are the changes of that?). She has it in her lungs and has been controlling it for quite some time. Her stories have really inspired me as they knew very little about her disease when it was discovered. She gave me the name of a doctor in Denver who specializes in NET tumors. Dr. Eric Liu is an internationally recognized surgeon who researches, studies and works directly in the world of carcinoid and NET tumors, writing and speaking on the subject often. Dr. Liu works at Rocky Mountain Cancer Center in Denver where they have a Neuroendocrine Institute. Finding a dedicated specialist is important, and I feel incredibly fortunate to have a hyper-specialist that’s on the leading-edge so close to home. Mary Ann, I can’t thank you enough for all the time and care you’ve given me.

The big trick now is navigating the medical system. Dr. Liu is not in my Kaiser insurance network. A referral and coverage is possible if it’s deemed to be a level of care that’s better than what I can get here. My local oncologist has been great and put in an immediate referral. The current wrench in the system? The surgeon in Denver that removed my first tumor has been working behind-the-scenes with Dr. Liu and has reviewed my images with him. He’s confirmed that the treatment I’m on is the best first step and according to my surgeon Dr. Liu didn’t seem to think my case was anything alarming or out-of-the ordinary. To the insurance company that means the care I’m getting is just fine and the referral process has been halted. My surgeon in Denver has been incredible, calling every-other-week with no real skin in the game and is now doing his best to see if he can work with Dr. Liu to get the referral to go through. I’ve transferred a copy of all my medical records to Dr. Liu’s office so the next logical step is to just pay cash out-of-pocket for an appointment while I wait to see what happens on the insurance front.

Another amazing connection has been a high-school friend, Marilise, who has worked for many different cancer hospitals and research centers for the last 18 years. She’s given me great advice and says starting close-to-home, if possible, is almost always the best option. I’ve been keeping an on-going list of other cancer treatment centers, and we’ll be visiting MD Anderson in Houston in a few weeks while we’re there on a family trip.

My local oncologist, Dr. Njiaju has also been incredible. I have direct phone and access to two “nurse navigators” who’s only job is to help me get quick answers to any questions I might have. One of those navigators, Kathy, has helped me navigate insurance, along with a million questions, with near immediate responses.

Beyond that the biggest thing that’s on my radar right now is a treatment called PRRT (Peptide Receptor Radionuclide Therapy). It’s a recently approved FDA experimental treatment that combines a drug that binds to specific receptors on NETs with radiation and that is showing a lot of promise. It’s similar to the new scan that I had in that it only binds to the tumors themselves, shrinking them, sometimes in only one dose. Currently in Colorado the treatment is reserved for people that the treatment I’m on has stopped working effectively. However, there are several new trials testing different variations of this treatment and many think it will eclipse the treatment I’m on and become the main course of action.

This article, titled A Revolution in the Treatment of Neuroendocrine Tumors from 2017 talks about the new treatment, as well as Somatuline, the treatment I’m on. One patient mentioned in the article, whose tumors have spread to the liver says her doctors say “she could live 30 to 40 years with this”. Those are much more comforting numbers that I can live with, literally. For anyone who wants to know more about PPRT, here’s some of the articles I’ve found helpful:

• https://www.curetoday.com/expertconnections/carcinoid-improving-qol/recent-advances-in-treating-neuroendocrine-tumors
• http://www.prrt-treatment.com/prrt-and-net/prrt/
• https://netrf.org/peptide-receptor-radionuclide-therapy-prrt/
• https://www.onclive.com/web-exclusives/expert-shares-insight-on-navigating-neuroendocrine-tumor-treatment
• https://lutathera.com/

I’ve also been looking into lots of alternative therapies to add to my traditional medical treatments. I believe in hitting this thing from all angles. From diet to CBD oil and everything in between. With this disease I have to be careful about doing more harm than good, so I’ll be taking it slowly, researching and testing as I go. For all of you that have been nice enough to offer books, remedies and suggestions, I promise I’ll look into all of them. It may just take me some time and deciding what’s best for me.

Oh, and we’ve scheduled a trip to the beach in California, because let’s be honest, scrunching your toes in the sand, smelling the ocean air and listening to the waves is medicine we could all use more of.

What I need from everyone

When we first found out about all this, one of the first people I talked to was our great friend and mentor Erin. She suggested that once I felt comfortable, I should let people know what I need and how/when/if I’d like to be engaged about this topic (she’s so dang smart). So here’s where I’m at right now.

Talking about carcinoid, cancer and this whole situation

If it’s not already obvious, I’m totally comfortable talking about all of this, so if you have questions or want to talk, I’m happy to talk anytime! I also realize some people may not want to talk about it for a variety of reasons, and I’m totally OK with that too!

What I need right now

Right now it’s mostly the things that everyone has already been providing – love, friendship, kind words, hugs and laughs. More than ever I need the people in my life and want to spend more time around them. It’s funny how it takes something like this to remind us of something we already know. So keep-in-touch. Let’s chat on Facebook or in real life. Let’s schedule a coffee or lunch, listen to some music, go for a bike ride, geek-out over something or just give each other a quick hug.

I also want to know how you’re doing and hear about your lives. We all experience the highs-and-lows of life, and the more we share with each other, the more connected we feel. Let me know what you’ve been up to lately and how you’re feeling.

I know that this is just as tough if not tougher on Jenny, the kids and my parents and I really appreciate all the support everyone has been giving them. Especially by helping take their minds off of things and giving them ample opportunities to laugh and smile.

I promise I’ll get better at this blog thing, and I’ll strive to make updates that aren’t novels spaced out months at a time. For now, I love and appreciate all of you more than you’ll ever know!