Written by Lisa Yen, NP, NBC-HWC - March 14th, 2019
In honor of the upcoming LA marathon, we address what it means when people say that living with NET is like running a marathon rather than a sprint. In Marathon Training Part 1 of the 3-part series, we laid the groundwork for a proper understanding of the race including an overview of the science behind stress. The natural stress response causes the body to take off in an all-out, high-intensity sprint that inevitably leads to fatigue and exhaustion. We discovered that the key to slowing our sprint to a sustainable pace for an endurance race is to learn how to influence our body’s interpretation of the stressor.
In this article, we introduce a new strategy of re-training our body’s natural response to stress. We take the offensive against our stress by first understanding our own individual response to stress, so we can then change the way we react. This involves breaking down the stress into its basic ingredients in order to analyze them. You see, for a situation to be stressful and cause the release of stress hormones, the body interprets that it contains one or more of the following ingredients(1):
The goal is to understand why a particular stressor affects you the way it does. By breaking the stress down into its parts, we gain insight and understanding. Stress is highly personal and individual. Though there might be similarities, each person’s experience of stress is unique. Common stress ingredients for NET patients might look like this:
“I was never sick before.”
“I’ve never been to the doctor’s before.”
“I’ve never had surgery before.”
“I’ve never heard of these medical terms before.”
Being diagnosed with cancer, not to mention a rare one, is certainly new on many levels. Many report their diagnosis with NET as their first time encountering health issues. There are numerous elements of stress from being thrown into a whole new world—being a patient, navigating the medical system, and learning how to speak "NET lingo.” Feelings of helplessness, insecurity, grief, fear, and loss may arise.
“It just seemed to come out of nowhere.”
“How do I know what the best treatment is for me?”
“What will my next scan show?”
“I wish someone could tell me what I can expect.”
Not only is the disease course unpredictable, but the fact that there is no clear path ahead is one of the greatest sources of stress for NET patients.
Threat to the ego
“Did I do something to cause this?”
“I used to be strong and healthy. Now I feel like I’m falling apart.”
“I was just told I have Stage IV cancer.”
“My family/friends treat me as though I am terminally ill.”
Being told that you have cancer can easily be a challenge to your self-image and self-esteem. It might change the way you view yourself and your body.
Sense of no control
“I never expected anything like this to happen to someone like me.”
“What can I do to make the tumors stop growing?”
“There are so many appointments and scans and people telling me what to do.”
“My insurance denied my medication.”
Cancer, by definition, is cells that go out of control. Naturally, NET patients and their loved ones struggle with feelings of loss of control.
Breaking down your stressor into its ingredient (N.U.T.S.) can help you understand how it is affecting you. We can then move from a reactive position to a proactive position. The next step is creating a new marathon strategy. This is done by tricking the brain into thinking that the situation is not as stressful as it might feel. We reconstruct the stressor and reprogram our brains with new messages. In doing so, our bodies are re-trained to respond differently to stress.
Marathon training isn’t reactive; it’s proactive.
STRATEGY: RECONSTRUCT YOUR STRESS
Examples of how to reconstruct (“trick”) your stress:
Read previous LACNETS educational blog articles. (Education, Find a NET Specialist, Take control)
Sign up for the LACNETS newsletter. (Education, Take control)
Attend an upcoming LACNETS monthly educational meeting and save the date for the upcoming 2019 LACNETS annual patient education conference. The LACNETS meeting schedule can be found here. (Education, Take control, Find support)
In “NET marathon training,” deconstructing your stress is like analyzing and breaking down your specific gait. Reconstructing your stress is like retraining your gait in a healthier and more efficient way, one that protects your body and allows you to run much longer. You are reprogramming your body to respond to stress differently so that you can endure the long time and distance that you are under stress. You are conditioning your body by developing mental and physical strength to keep on running. As a result, you are developing resilience.
Take a moment to pause and imagine what you might say to a friend who is running the LA Marathon. You would applaud their effort in training and completing the race. Running a marathon is hard. So, you deserve credit just for running the race. It’s not about how fast you run. It’s an achievement to simply be in a marathon.
In the third and final part of this series, we will complete our marathon training by focusing on rest and recovery from stress.