DEALING WITH THE GREY ZONE
I’m in the grey zone again . . . a time of unknowns and uncertainty. My CA-125 (which is a blood test that is used to track how I am doing) has been creeping up steadily over my last four appointments. It appears as if my maintenance treatment may no longer be keeping my cancer from progressing. However, the blood test is not definitive and the value can go up and down from visit to visit so you usually wait until you see a clear pattern (continuing to rise over time) before having some type of imaging (like a CT or PET scan) to try to confirm what is happening.
I’m not very good with the grey zone. These periods of time where we don’t know what is going on: the treatment may be working . . . the treatment may not be working. This uncertainty often results in my living on a day by day basis, which for me is deeply unsettling.
I love planning. I love looking at the big picture and then creating the steps it would take to get there. Benjamin Franklin once said, “If you fail to plan, you are planning to fail!” I live for creating spreadsheets in order to track options and then make decisions. As my family knows, I even use spreadsheets to organize things in my personal life like vacations, party planning and making big purchases.
But when you are in this grey zone of uncertainty it’s sometimes hard to look to the future. Making plans is difficult for many practical reasons. For instance, it can be hard to arrange a vacation or RSVP to an event when you don’t know exactly what your treatment schedule is going to be. You might be reluctant to commit to a job or project because you don’t know if you will be able to meet your commitment.
My adult daughter and I recently took an amazing trip to South Africa. I’m so glad I didn’t let my fear of what might be happening hold me back from planning this fantastic experience. I did buy travel insurance in case we had to cancel the trip, medical evacuation service in case I needed to get home quickly, and packed a mini “survival kit” with everything I might possibly need to manage any medical issues (lymphedema, neuropathy, digestive problems, sun sensitivity, etc.) that might interfere with my trip. My “South Africa” spreadsheet included details for every element of the trip including lodging, transportation, daily activities as well as detailed packing lists so we had all the essentials but didn’t exceed the luggage restrictions for the small planes that flew us into the safari lodges. My meticulous planning resulted in a memorable trip that went off without a hitch.
But being a planner means I’m not always comfortable with being spontaneous. The funny thing is this trip also taught me the value of remaining flexible and being open to doing things without a plan. The main purpose of our trip was to go “on safari”; riding in an open vehicle, camera in hand, hoping to see all the magnificent animals of the South African forests and bushlands. The animals roam freely within an area of 50-100 square miles at these reserves and it is hard to predict where they might be at any given time. So, if you put a plan together to try to locate a certain animal you risk not seeing much at all as you drive long distances from spot to spot trying to work your plan.
The best safari drives were when we got into the vehicle and the extent of our plan was to say, “Let’s go see some animals.” We were spontaneous and impulsive; our incredibly talented trackers and guides would see a sign that indicated an animal was in the vicinity and we would just follow those signs to see where they would take us.
During these unstructured drives we located a mama leopard who had pulled her kill high into the branches of a tree. We watched as her young male cub ate his dinner while she lay snoozing on a nearby branch and three hyenas circled the tree hoping the cub would accidentally drop the meal. We came across a rhino family (dad, mom and calf) at a watering hole and laughed as the calf threw a “fit” because dad wanted to leave the watering hole and the calf wasn’t finished nursing yet. We were sitting on a bluff watching hippos in a small lake below us only to move our vehicle forward 10 feet and discover that a female lioness and her two cubs were lounging on the rocks 30 feet above us ~ watching us watch the hippos! These unplanned, natural encounters were the most magical and memorable experiences .
No one knows what the future will bring. Accidents, catastrophic health events and natural disasters (like hurricanes, earthquakes and wildfires) take people every day without warning. Time is finite for everyone. I recognize that if I let the fear of the unknown paralyze me, I risk missing out on things that are important to me.
So, I try to give myself permission to plan during this time of ambiguity but also the freedom to be spontaneous. I remind myself that I’ve been given this precious gift of time – time I didn’t think I would have when I was first diagnosed with cancer – and it’s up to me to make sure I’m using it well even when I’m in the grey zone.
Teri Woodhull
Globe-athon is proud to partner with Smart Patients, an online community where patients learn from each other about their cancer journeys. On Smart Patients, you can discuss issues raised in this blog post and beyond. Join here: https://www.
