Becoming a Cancer Navigator — Part 1

When you are exploring a new place—in the car or on foot—how do you find your way around? You might simply follow a clear path to discover where it leads. But more often, we want precise directions. Take the left fork, turn here, stop there. Do you prefer to follow instructions from someone you trust? Or do you prefer to be the navigator—figuring out where you are, where you want to go, and how to best get to that place? I HATE being passive and definitely prefer to be the decision maker. It’s the same for me on this health adventure. I much prefer to be the Cancer Navigator!

I Prefer to be the Navigator

In the previous post, I explained why I dislike being called a Cancer Survivor, Victim, or Thriver. I told you that I am happy to be called a Cancer Navigator… but what, exactly, do I mean by that? And why do I prefer that title over more common labels?

selfie, middle age woman

To me, becoming a Cancer Navigator implies taking an active role in making decisions. The name has positive vibes which encourages me to stay engaged and involved in my treatment rather than becoming a passive victim or survivor. And the term acknowledges the importance of continued learning and questioning at each stage along this journey.

Youngest daughter and I have backpacked almost 500 miles of the AT (Appalachian Trail). (If you look in the archives, that was why I first started this blog before our first long trek in late summer 2015.) Taking a multi-week hike requires significant amounts of advance planning to choose which section to hike, gather gear, plan when and where to resupply food, and more. On the other hand, because it is so well marked, an adventure on the AT does not really require many navigational skills. We just had to follow the trails and landmarks on the map, look for white blazes which show the way, and read trail signs. The AT is well-traveled enough to generally be easy to follow without getting lost. (Click HERE to read about Getting from Point A to Point B Without Getting Lost on the AT)

backpackers, hikers, fall woods
AT blaze, backpacker on trail

Sometimes, a health adventure is like those trips we made. The patient goes to the doctor, then follows the clear path that is standard protocol for that particular illness or injury. Honestly, most illnesses or injuries do not require navigational skills to help with decision making. Unless something unexpected happens along the way, the patient simply follows the path that is laid out for them by their health care provider.

Call Me a Cancer Navigator

So why would I call myself a Cancer Navigator? Can’t we just follow standard protocols for my treatment? Nope! My cancer journey is not a simple “walk in the woods.” It is more like bushwhacking through unknown territory while trying to keep from getting totally lost! I have an exceedingly rare cancer which means there are few standard treatments available and many of the possibilities have a low success rate for survival. In the past, this diagnosis would have been considered terminal. Research offers new targeted treatments which move this diagnosis from terminal (death in a few months or years) to being an incurable, chronic cancer (something I will hopefully live with for many years to come). In my case, I am clearly not on a well-traveled trail. To keep from getting lost in the deep woods, I must hone my navigational skills and figure out which route is more likely to help me live the longest time possible.

masked patient in pre-op, stuffed sloth

Fortunately, I am not alone on this health adventure. I have a supportive husband who helps me sort through information, think of more questions to ask, and make decisions. I have a medical oncology team who communicate clearly and whom I trust. And I am getting treatment at a cancer center known for its compassionate care and cutting-edge research.

The Basics of Being a Successful Navigator

We rarely stop to think of it this way, but building strong navigational skills is important in many aspects of life. It applies every time we try something new, whether by choice or necessity. Learning how to successfully sort through options and choices applies to concrete activities such as driving, backpacking, and boating/cruising. And it applies to less tangible tasks such as effectively working with the education system, the workplace, and the healthcare system.

homeschooled students at table
We spent many years navigating the home-school world

At its simplest, building effective navigation skills in any setting can be summarized with three simple questions which must be answered:

  • “Where am I currently?”
  • “What location or goal am I aiming for?”
  • “What’s the most effective way to get there?”

It might take awhile to clearly define the answers to each step. In addition, the goals, and methods of reaching them are frequently changing. This requires flexibility on the part of the navigator and his/her team. Finally, the navigator must keep in mind the specific needs and desires of the individuals who are participating in the adventure.

The Basics of Being My Own Cancer Navigator

When I consider these questions as a Cancer Navigator for my own journey, my answers look like this:

  • The chronic cancer I was diagnosed with 2+ years ago, has recurred. This time it is aggressive and growing quickly.
  • Obviously, I would prefer the goal of being completely cured of all cancer. However, we must face the reality that this is a “chronic cancer” and will continue to recur for the rest of my life. So, the current goal is finding a way to live fully for as long as possible while co-existing with this cancer. (I will write another post soon to explore this concept more fully.)
  • My doctor presented several options for treatment this time around. We assumed surgery would be scheduled asap. However, both my doc and the oncology surgeon made it clear that surgery was not a viable option until the current cancer is under control and the multiple tumors are shrinking. We had to consider the pros and cons of each route as we decided which treatment option to pursue first.
masked patient in exam room, stuffed sloth

As you know, if you have been following this most recent health adventure, we chose to participate in a research trial of a new, very targeted medication. By trying this option first, we can easily move to another treatment if this fails to control my cancer. But if we had tried either of the other options first, we could not have gotten into the trial later. I am starting week 3 of an 8-week study. If the medicine is as effective as we hope, the trial sponsor will provide me with these pills for as long as I need them after I finish these closely monitored two months in the study.

Please let me know if there is something you want to know more about from my cancer journey! I’m happy to answer questions… In upcoming posts, I will compare being a Cancer Navigator to being a Navigator on an ocean-going ship. I will describe how this Phase 1 drug trial works. I will  explain how most cancer treatment has moved away from being an all-out “war on cancer.” And I will share a few short, hopefully entertaining stories from this cancer journey path.

If you hate to miss the latest reports from my Cancer Journey, you can bookmark this site or you can scroll to the bottom of any page and sign up for email notification whenever I make a new post.

(THANK YOU for following with me on this cancer journey! I appreciate every comment, encouragement, prayer, good wishes, and other types of support. I cannot imagine doing this alone…)


Now that I am an active cancer patient yet again, I decided to add a “health adventures” tab to my website. You can follow my current cancer journey in a couple of ways:

  • click HERE to see frequent mini-updates plus links to the pages below;
  • click HERE to see a compilation of all of the mini-updates archived in one place; and
  • click HERE to see photos and read blog stories about the ups and downs of this stressful journey plus posts from past health challenges.
  • Feel free to poke around the site and check out other Big Epic Adventures I have documented in the past—backpacking and other outdoor fun, becoming a certified Nature and Forest Guide, trip reports, and other daily activities.

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