Yes, this is a real word. While you will not find it in the dictionary (yet), ask any cancer patient about the waiting period after you have had a set of scans.
I received a call Saturday night from the nurse confirming my 7:30 a.m. pet scan on Monday. She was making sure that I knew that I needed to eat a low carb, high protein diet all day on Sunday and eliminate caffeine as well. She said to drink plenty of water. She instructed me to be at the scan 30 minutes early. Then, she hung up.
Sunday I felt a little anxious and perhaps a tiny, bit grumpy. I like to think that I am stronger than fear though and attributed it to not being able to enjoy my coffee. When they take away sugar and alcoholic beverages from you, caffeine becomes your vice. Having dear friends over Sunday night for dinner helped to distract me from what the next morning would bring.
Monday’s alarm was especially loud as I got ready, sans coffee, and drove myself to the hospital. My sweet hubby stayed home to get Daisy ready and to school. I spent the hour preceding my appointment assuring him that I am strong and fearless and going to this appointment alone was a piece of cake.
Prepping for the scan includes chugging (literally) a LARGE cup of ICE water with iodine while fighting back a brain freeze, all the while the nurses asking, “everything ok?”. Then they ask a series of routine questions, “have you had any unusual pain since your last scan?”, “any shortness of breath?”, and “any headaches” (besides the one we just forced upon you with the ice water). My answers feel routine, while my mind fears the day when a NO changes into a YES.
Then the fun part. They prick your finger to check you glucose. Mine is always very, very low. It always makes me chuckle a little because they act shocked after they told me not to eat carbs, drink a ton of water and fast after midnight . What exactly do they think is left in me? They search for the perfect vein, reminding each other that I am a “tough stick”. I make my usual joke replacing stick with the word chick, and they proceed to insert the needle into my vein. Once they are in, they leave the room. Then they re-enter in their hazmat attire and inject radioactive dye into my vein asking, “Any burning or stinging Jennifer?”. Fortunately for all of us, my answer, to date, has always been no. However, at this point my bladder is full and I’m rocking a pretty good headache. They instruct me to sit still and do not move at all. They recline the chair, turn on the t.v. and put a blanket over me.
Thirty minutes later they come in again and make me CHUG another LARGE glass of ICE water with iodine but NOOOOO moving. Reclined once again, I sit for another thirty minutes. After the hour is up, I am allowed to go to the restroom and instructed to take off everything metal. Now the scan begins.
Laying on the bed with my arms above my head, I close my eyes. For some reason, this helps me relax and not focus on the tube they are sending me in an out of. Once in awhile, I peek to see where I am at wondering “what do they see?”and “have they stopped for a reason?”. It is at this precise point that scanxiety sets in for me.
My mind plays all kinds of tricks on, “Wow, this time I was in there longer than usual” and “is that where my liver is?”. As the technicians bring me out of the scan, I look at their facial expressions, trying to read in their faces what they aren’t saying. I listen to every word carefully, assessing their volume and wondering if their low voices mean my scan shows progression. A simple hug goodbye from a nurse that has not hugged me before, panics me into thinking that was a sympathy gesture.
It can be hard to manage the scanxiety. You try to put it out of your head, after all, it is over, right? The nurses called the day before and I followed every one of their instructions perfectly.
However, the nurse hung up the phone Saturday night forgetting to mention what I should do AFTER the scan. What in the world do I do with myself until they call me with the results. Monday, Tuesday, Wednesday….no word. Is no news, good news? Has no patient ever before me asked the doctors and nurses what do you do AFTER the scan? My tumor markers rising sent me to the scan. Now what do I do?
The waiting is by far THE hardest part. Scanxiety is real. Perhaps they need to teach that in medical school. So, I sit here with my cup of coffee, coping.