While thinking of this week’s blog the other day, I realized I haven’t written about my cancer experience yet. Maybe I wanted to get the mental health stuff out of the way because it has gone on for so long it was begging to come out first. Today, I feel like I have no choice but to write about cancer.
Most people live in fear of some terrible event changing their lives, the death of a loved one or a serious illness. For the chronically ill, this terrible event has already happened, and we have been let in on an amazing secret: You survive. You adapt, and your life changes, but in the end you go on, with whatever compromises you have been forced to make, whatever losses you have been forced to endure. You learn to balance your fears with the simple truth that you must go on living.
Jamie Weisman, As I Live and Breathe: Notes of a Patient-Doctor
My sleeping patterns have been off lately. I wake up extremely early and it’s hard to get back to sleep. I woke up around 5:30 this morning with a screaming pain in my side. This pain started in the last couple days, but was only slightly annoying. I am used to random pain. It doesn’t scare me too much anymore because it happens less and less now with the change in my diet because of my celiac disease diagnosis.
This morning, the pain was different. It was sharp and steady and I woke up in a panic. A very clear thought in my head was, I have cancer again. As my rational brain tried to dispute and clear the thought, it persisted. It was a loud, specific message stating I have a tumor on my right side near my rib and I will be diagnosed next Monday, June 5. My rational brain stepped in again because this was waaaayy too specific. I may be intuitive, but I have been to a psychic in the past for fun and even they aren’t that specific. Good one brain, but I don’t think so!
It is quite common for someone who had cancer to get anxiety about a recurrence. Many times, it is triggered by an upcoming, dreaded checkup. I am still going every 3 months and will probably graduate to every 6 months soon. Many of my friends have to get scans and get what many of us refer to as “scanxiety”. Luckily, I only have to get bloodwork to check my status. My doctor is very kind and will put in an order for my tests any time I want to be reassured. It has only happened a few times and now I am ok just waiting for when it is time for my next appointment.
Yesterday, I realized I have an appointment with my oncologist on Friday. I will go for bloodwork on Tuesday to get the results in time. Getting bloodwork is such a relief. I have a blood test which makes it very clear if something is off. The test is called the CA125. I cant explain the numbers proportionately, but I can tell you “normal” is 30 and under. If the number is abnormal, it doesn’t necessarily mean there is cancer present or anything serious is wrong. Unfortunately, it is unknown if it can be used as a way to monitor until after cancer has already been diagnosed. It was alarming when, before my surgery, my number was 360. I was told it could be elevated for so many reasons. For some people with cancer, it isn’t always elevated before diagnosis, so it can’t be used as a future marker to monitor using bloodwork. We just had to keep the number tucked away until after my exploratory surgery.
“Exploratory surgery” was the first step into my cancer experience. My surgeon was up front about having no idea what she would find until she got in there to look around. She had some strong educated guesses, but none of them leaned very hard toward cancer. Before the surgery, she laid out some possible outcomes as to what might be removed, what she may find, and the different possibilities for incisions and scars. I felt as informed as I could be.
A week after surgery, it was confirmed I had cancer. It was also confirmed my CA-125 was an excellent marker because it went from 360 down to 12 right after surgery. I was a little busy with processing my diagnosis to realize this was a great thing for the future. As I had chemo, the number continued to go down as low as 3 and now lives at a very safe, reasonable average of 6.
After having about 2 hours of anxiety this morning, it was late enough to call my mother for some reassurance. My mom is so good about giving my fear the space to be acknowledged. She doesn’t tell me I am wrong or I am overreacting. She made sure to tell me she knew it was a very real fear, while still offering comforting advice that it was a possibility it had been on my mind. She compared what happened to what it is like when waking up from a nightmare and the brain has to decide what is real. It sometimes lingers in the nightmare as if it is reality.
Our brains are tricky and hold onto information in our subconscious. Being farther from this alarming thought, I realize there are bits of information my brain used to trick me into having such a real, detailed reason to panic. One piece is I have my appointment on Thursday. As much as I think I am over the anxiety, my subconscious begs to differ. How did I get the specific idea I would be diagnosed again on the 5th?? Well, there was another fact my brain threw in there. I realize now June 5th is my 2 year anniversary of my last day of chemo. What could be more terrifying than thinking you are almost out of the woods only to be slapped in the face with the news your cancer has returned? I have plenty of friends who have received this awful news.
Most of the time, I am able to go about my life having anxiety about small things like employment, being extremely forgetful, and eating something with gluten in it. (Yep, I just read that and think it is funny I classified those as small things to be anxious about). I guess we all have differing perspectives about the size of our worries. It is big anxiety like I had this morning appearing out of what seems to be nowhere that feels so terrifying. I have worked hard to have healthy, wise-minded reactions to these terrible moments of fear. This morning, I needed a little reminder from my mom about all the tools I have to make sure the fear doesn’t take over and control my reactions to it. I took some time, went back to sleep, woke up with a more calm, rational mind, and was ready to release my anxiety by writing this.
It is important for me to share when these things happen. While I feel a little embarrassed by my imagination, I want to reach people who experience this and let them know they are not alone. YOU ARE NOT ALONE. Anxiety about cancer recurrence is very real. We are not being paranoid. Cancer is something that already snuck into our lives and has the potential to sneak back in. This is a fact. More important is what we do with the fear. We CANNOT let it rule our lives. The fear will come and go. While I ultimately don’t have control of a recurrence, I have learned I am the boss over how I choose to react to my anxiety. What I am choosing is to recognize when it arrives, give it space, validate it as irrational fear, and move forward. This comes with practice. I had to learn a lot to overcome anxiety about illness in a shorter amount of time. Sure, bad things do happen, but while they aren’t happening, I want to spend my time having fun, making good memories, and loving the people in my life. I guess I can spare some of the time to worry about small stuff. After all, I’m not perfect and it can’t ALWAYS be sunshine and rainbows.