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Scanxiety: The Uncertain Side of Cancer

I had insomnia last night. At 3:00 a.m. I was in bed, wide awake, consumed with thoughts, and unable to direct my mind to a peaceful place.

Earlier that day I had my bi-annual follow-up scans post-treatment from Ocular Melanoma. It has been 1.5 years since my diagnosis and treatment and most days I don’t give a thought to the trauma my mind, body, and spirit went through. This was my fourth round of scans and thankfully my first 3 came back with no signs of cancer floating around anywhere else in my body.

I didn’t really feel many emotions leading up to the appointment. In fact, aside from the cost of the test, I don’t mind the medical appointment. I get CT scans of the chest and abdomen. The process is usually 20 minutes or less. I get a simple needle prick for the IV contrast, 20 seconds of searing heat in my body and feeling like I am peeing my pants, and holding my breath a few times while the images are taken. I actually look forward to having a few minutes to lay down, close my eyes, and meditate.

So why insomnia?

Apparently, I suffer from a real thing for cancer survivors called, “scanxiety”.

Scanxiety is the worry that accompanies the period of time before undergoing or receiving the results of a medical exam. Scans can cause stress, nervousness, anxiety, and wreak havoc on a person’s ability to sleep, eat, and function. As if diagnosis and treatment weren’t stressful enough after treatment cancer survivors worry about recurrence. For many, the anxiety can begin even weeks before a scan.

For me, the physical part of the scans is the easy part. It is the waiting for results that kills me.

After losing sleep last night, I realized that today I am clenching my jaw, I am jittery and cranky, and I am holding so much tension I gave myself a headache. I am anxious just thinking about how anxious I will be when my phone lights up with a phone call from my doctor. I am just waiting...waiting...waiting.

For 15 months my scans have been clear, I don’t fell ill, I don’t feel like I have any symptoms, and I don't view cancer as a death sentence. So nothing should indicate this scan should be any different than my last 3 rounds.

So why am I so anxious this time around?

I think each time the scans pop up on the calendar, it is just a reminder of what I went through and what I don't want to go through again. I know the emotional rollercoaster that goes along with waiting for one phone call that can take me from feeling stress and fear to feeling elation and relief.

I think the underlying component of "scanxiety" is uncertainty.

Feeling anxious during periods of uncertainty is something even non-cancer survivors can relate to.

I have at least 3 more years of bi-annual scans ahead of me so I think it is time buckle down and focus on some coping strategies:

Get rid of expectations: We innately do not like things to be busy, hectic, and complicated. During times of uncertainty, we feel uncomfortable and anxious because we like order, simplicity, and perfection. You can guide your tomorrow, but you can’t control the exact outcome. Expectations take away your desire to plan and feel in control. One strategy is to flip it around and focus on the things in your daily life you can control such as what to make for dinner, what outfit you will wear out for date night, or which workout to try.

Reduce worry: We spend far too much time worrying about other people and situations that we cannot control and worrying never solves a problem. Try asking yourself this important question; can you do anything about it today, tomorrow, or ever? If not, quit worrying.

Balance Optimism: In life, we are encouraged to stop focusing on what could go wrong and taught to think positive and good things will happen, think about the things that will go right, and look at life through a positive lens. But are we really wired that way? Unrealistic pessimism is overblown negative thinking that includes thoughts of crippling catastrophes and living life in fear. Unrealistic optimism is unrestrained positive thinking when you believe only good things will come because the universe is ensuring you are successful. It is the belief that challenges will magically disappear without action. Realistic pessimism is having an accurate assessment of your reality and possible outcomes but leans towards focusing on the negative outcomes. Realistic optimism is a sweet spot. You have an accurate assessment of reality and you are able to imagine probable outcomes. Realistic optimists are resilient and usually have a growth mindset.

Mara Karpel Ph.D says, “Combine a positive attitude with an honest evaluation of the challenges you may meet along your path.”

Channel Confidence: Your tone of voice, body language, and speed/pitch at which you speak can indicate your level of stress. Do not expect the worst to happen, rather assure yourself that you can handle any difficulty that might come. Attitude is half the battle. Is your inner dialogue positive or negative? Try asking yourself, is my line of thinking productive and helpful? You don’t have to dismiss the reality of your current situation, but you can relax into it.

Adapt for change: Uncertainty usually stems from a lack of information, so try to prepare for different possibilities. Be prepared to modify your thoughts and actions at moment’s notice and build up your tolerance to change. While you may not be able to change the situation, accepting it will allow you to remain adaptable. Fluid and flexible should be your two favorite words.

“Try not to resist the changes that come your way. Instead, let life live through you. And do not worry that your life is turning upside down. How do you know that the side you are used to is better than one to come?” Rumi

Fight Fear: Uncertainty typically leads to fear which creates a cycle of reactionary thoughts and poor decision making. Try to focus accurately and rationally on the information you have at the moment, versus creating an unrealistic fear of what could be.

Be proactive: Try and get in front of the stress even if it isn’t at the forefront of your thoughts at this exact moment. Create a power phrase that can keep you focused. Ex: “Peaceful and present” “Calm, capable, caring”. Create a list of friends and family you can call when you are having a hard time coping with uncertainty.

Trust the wait...embrace the uncertainty

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