Current Adventures & Next Steps
These last few weeks have been quite an adventure. Although lately it seems most of life has it’s adventures, so perhaps an adventure within the journey. Figured it’s about time I get back to writing a bit and share what’s been happening and what will be happening next.
The Caribbean Adventure (#OGetaway Seas the Moment 2018)
So I’m guessing a few of you saw the snippets I shared from being on a cruise in the Caribbean. What a fun trip. The wasn’t just a vacation, though that’s what Heather keeps calling it. As part of my association with Organo (Organo Gold, “OG”) since losing weight and regaining my passion for being healthy and active I’ve been able to continue as an OGX Brand Ambassador for their health products. With that I qualified as an X-Challenge participant to join their incentive cruise with their top performers of distributors and other winners of the health challenge. What a great reward for working on becoming a better version of yourself to enjoy such a retreat! This was one big class of ship too. The Allure of the Seas by Royal Caribbean. I’ve never been on one with interior balconies in one of three atriums. Did I mention it’s big?This was also a work trip for me as I recorded some media for their upcoming promotions of their health tools, including their FENIX meal replacement shake, XT and DX drinks, and the X4Ever app that offers meal plans, recipes, and workout suggestions to help you in your healthy efforts. This put me in front of the camera much more than I’m used to, but I enjoy sharing the positive and healthy message. Plus, I mean really, I can’t complain about doing all that in great locations and on a cruise ship. The key here is that those members that choose to participate in the X-Challenge can qualify just like I did and several others to be on the cruise…for free! I met many great new people and made some new friends within the Organo family. Such a great experience where you get to talk with people successful in their business efforts and with some time to chat outside of a convention or hurried visit.
The second part of my being on the cruise was to do what I do when it comes to company retreats and incentive trips and that is to be a photographer. I love covering these events for people and take professional photos and video for their events. These photos get provided to participants an used in their upcoming marketing, so it is worth having a professional there to capture as much quality footage as possible. That makes for some long days, gear lugging and moving around all the activities as much as possible. Assisting Maikel in this effort was a blast and a big part of what I tried to accomplish in providing that value back to the company. I hope to do a lot more of this in the future for them and continue with others as part of providing for my family.
I was covering an event the days just prior to the trip for another great outfit in Park City and Kamas with Digital Blue, the outfit I work with for a lot of event and destination coverage. Really love this kind of work and hope to have much more of it next year as well.
One part of this cruise gig that I really enjoyed was that I was able to have my brother tag along. The room was booked for me, and Organo invited me to bring along someone to fill the room occupancy if I liked. We looked to see if Heather could join me, but it just wasn’t feasible. Jason jumped in and was able to work out the last minute details, so it quickly was renamed the “Bro Trip” giving us a chance to hang out and enjoy the ride. While we live close enough to get together, it’s always with family (a.k.a. having the cousins over for dinner), so some bro time was a lot of fun. A great time was had, including many little indulgent foods, some excursions and plenty of sunburn and sweat along the way. All elements of a great trip. Jason was roped into getting some photos and even drone footage of me to provide back to the company.
The Case of the Missing Gear Adventure (Fiasco)
I’m guessing most have seen my posts detailing the rollercoaster that was the loss and reclaiming of my photo gear. What a crazy turn of events. I won’t rehash all that, but that was something I hope to never repeat. From my bag being taken while waiting at the gate to having the Sheriffs somehow track it down and turn it into TSA was so unexpected and emotionally a crazy ride. Thank you to all that commiserated with me, but even more to those that offered help in getting the bag home, especially Heather, Erin and John that actually ended up being the key assistance via a JetBlue relationships. I can tell you on the next trip/gig that bag will be attached to me somehow.
The Bryce Canyon Adventure
After the trip was over and the camera gear craziness solved, the next day it was time for some long overdue family togetherness. For Fall Break (a few days off school) we had long ago scheduled a couple of nights camping at Bryce Canyon. Bryce is one of if not our favorite Park in Utah. The views are amazing, the hikes accessible, and the Ruby’s Inn campground right near the entrance. Going later in the year is a fun way to cap off the season, and two years ago while cold at night it was pretty warm overall and a lot of fun. This time it was cooooold at night and moderate during the day with some doses of wind. Our girls (and us) were reminded that having the right gear and being better prepared for cold would have been a smart move. That said, we managed to huddle together around our little campfires and bundle up in the tents for warmth. Outside a little winging about the cold and pointing out the warm weather activities some friends were messaging they were doing the girls had a great time. No doubt the favorite was a 3 hour horseback ride up a nearby canyon full of hoodoos and beautiful scenery. From my perspective, every bit of it was worth the investment of time and energy. Family time is the best time.The Ongoing Cancer Adventure and the Case of What’s Next
On the health front I’ve been waiting (and waiting) for the news of my biopsy and then what we will do with whatever information would come from that. While I know DNA mutation testing takes some time, I was starting to wonder if I’d ever get a successful test result. The results finally came in, and in some ways it was a non-result. They showed I had no recognized additional mutations we can target within the GIST treatments.So in some ways that’s good right? I’m not so sure. If it showed a specific mutation to which we could match a drug or clinical trial, then we could go after that. Without a mutation result we are back to the “old” mutation present that matches with the drug I’ve been taking but has not been working. So this puts me in a “wild type” designation from what I understand, essentially that I’m drug resistant or more specifically that the tumor is growing despite being on the highest dosage of that drug.
What’s next? My oncologist looked into clinical trials and found one possibility that didn’t pan out. To qualify I needed to have tried and failed on two different drugs in the typical protocol. Plus, and this part I wasn’t too excited about, being in the trial you sign up knowing you could be 1 in 3 that receive a placebo. I don’t like the idea of not receiving any treatment because I’ve already shown post surgery that by taking nothing my cancer has rapidly grown. So next up is the second tier drug option called Sutent (generic name sunitinib). It’s second tier for a number of reasons, most notably that it isn’t typically as effective and has a higher likelihood of the bad side effects. Fatigue, digestive problems, rashes, intestinal distress, etc. Wahoo.
But that’s what’s next for me and the wheels of insurance and prescription have started turning so I should have it within a few days or the next week. We will have to see how well I withstand the treatment. It’s again a daily pill, and I’ll be on a consistent dosage where I take it non stop versus the option of a higher dosage for 4 weeks and off 2 weeks. We will follow up in a month or two with another CT scan to see if it’s working.
Emotionally this is another one of those slogs that never seems to end. And yet, it’s also the battle that you work hard to not let completely define you. Cancer doesn’t define me, but it sure is a big part of my life and the decisions we make as a family. At the root of it though, I try hard to find reasons to have it enhance the choices we make of how we spend time and what we do. So much of what we can’t control is going to happen no matter how we feel, fret or try and worry about it. So let’s live the life we’re given and enjoy the ride. That’s at the heart of Choosing to Live.
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