Keep Calm and Carry On

Living with Scanxiety

I gained a pound and a half!!! I never in my life thought I’d celebrate gaining weight. I’ve always been on the well-endowed side of life and have always been trying to lose weight. I was anticipating just shedding pounds on chemo, but then I learned about steroids… The only time I felt like I was effortlessly losing weight was right before I was diagnosed, and that, as I found out, was due to cancer!

So when I was slowly dropping weight, over the holidays no less, without being on a regimented diet or exercise program, I panicked. Ever shed pound didn’t spark the joy that it typically would, it filled my heart with dread. When I saw that pound and a half, it was my reassurance that the cancer wasn’t back.

When I relapsed, I was sleeping all day, every Saturday. Growing up, if I took a nap it meant it would take a long time for me to fall asleep at night. But this was different- I could sleep all day and still fall right asleep at night. And then I found the reason- the cancer was back. But still- I sleep two Saturdays in a row, and while my body feels better, my brain is a tragic mess.

I’m sure you have your own triggers. On and off I have bad back pain- must be a bone cancer. A series of headaches has got to be a brain tumor. Walking up a flight of stairs and becoming breathless, and the cancer is back in my lungs. I consider myself a reasonably intelligent person, with unfortunate Googling skills. I think of myself as a logical person, 98% of the time. But that 2%- that’s the killer. Fear can immobilize us. Anxiety can overwhelm us. And uncertainty can break us. The smallest abnormality in my body hurtles me towards the worst-case scenario.

I’ve heard the term “scanxiety” quite a bit. And it is so real. That uncertainty of what is going to happen at this next PET, CT, or even an ultrasound can be so overwhelming. I’ve found I get crabby and super on-edge in the week leading up and right after it. I forget even the simplest tasks. I make a conscious effort to not think or worry about what will happen, but my subconscious can think of nothing else.

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After my first cancer, I had the typical 3-month scans. And they found the cancer had returned. After my second cancer, they found a suspicious lump on my new three-month scan. And my heart seemed to stop.

It didn’t seem possible that I could get cancer for a third time in less than 18 months. After a major surgery and removing my thymus, it turned out not to be cancer. But the worry was still there.

They say your chances to survive increase drastically after five years.  March 18^th last month marked six years post-transplant. And I think my worry has gone down by 6%. I’m not stupid. I know I’m at a greatly increased risk of secondary cancers due to my radiation. I don’t know what will happen. Even though none of us know the future, it doesn’t always make the future any easier!

This last year I had a few liver/abdominal ultrasounds. There was a suspicious finding…how every good horrible cancer story begins. My wonderful survivor oncologist decided to track it with a new ultrasound every few months, just to make sure it didn’t grow or spread. She is incredible about researching the radiology report and presenting me with the findings and course of action promptly, and I trust her greatly.

I had an ultrasound in early August. Routine, same old ultrasound as I’d had a few times since January. Get the warm jelly, fall asleep as the tech pushes on your stomach, roll to your side when she tells you, sleep again as she goes to make sure the doc got all the pictures he wanted… Then this young, newer doc walked into the room. He announced that he wanted to do the ultrasound again, this time with contrast, because “there’s a new spot on your liver”.

As rational as I typically am, there is no logic left in my head the week of any imaging. The slightest cough, a twinge of bone pain, and a breathless walk around the neighborhood all turn into signs that the cancer is back and attacking me. So a “new spot” is instantly a big bad horrible thing. My nerves and chemo-shot veins didn’t help the tech put an IV in, but after 4 tries we had one.

I finished the ultrasound, and the head doc came in and reviewed everything. He didn’t seem too concerned and sent me on my way. My oncologist was on vacation that week, so I didn’t hear from her for a week and a half. I had my entire soon-to-be-shortened life planned out by the time she called. I thought through how I would keep on working, what treatments I would or wouldn’t be willing to go through, if I would move back in with my parents, and so much more. Perfectly normal thoughts for any 24-year old, right?

The young doctor hadn’t reviewed his notes (and spoken out of turn) and this second spot was apparently always there and nothing to worry about.   And my life could return to normal.

But during that limbo period, I realized how deep the fear runs in me. I’m not afraid of dying- I have full confidence in where I am going. But there’s so much to think about that I shouldn’t have to think about. My anxiety manifests itself in anger, short-tempers, and extreme emotions. I can cry if a dog looks at me. When I return to the land of the living, I always get super mad at myself for being so irrational.

Recently, I was talking to another 20-something-engineer-cancer-girlfriend. A smart, logical, mature person. And she had some blood tests in regard to her cancer that had happened the day before. She shared how anxious and on-edge she had been all week! She echoed my irrationality sentiments and said how just waiting for those test results was hanging over her head.

As sorry as I was to hear her pain, it made me really glad to hear I wasn’t alone! I wish I could give you some advice on how to eliminate the anxiety, fear and gut-wrenching emotions that come with scans and tests and waiting for results, but I can’t. I can’t even promise it gets better, because the reality is it doesn’t. But I want to leave you with two thoughts on this subject.

Keep calm and carry on

Don’t jump to the worst-case scenario until you have the facts. Preaching to the choir with that statement, but it is something I try to consciously remind myself off. Maybe it’s just a clump of dead cells or an inexperienced doctor blabbing when he shouldn’t. Maybe it is cancer, but don’t stress unnecessarily until you have to.

Friends can be great here. I had a bad cough that I saw the doctor for while in college. My original cancer was in my lungs, so they are greatly damaged. The doctor said there were some issues, and that there were further reviews and tests needed. My friends knew about the appointment, and that was the first thing they asked me about when I got back to the computer lab. I was dealing with the same cancer-is-back fears and tried to avoid them, but they wouldn’t drop it.

When I told them the uncertain verdict, they were quick to comfort me, and told me not to stress until I knew for sure. They were the voices of reason and logic and steadiness that I needed when I wasn’t myself. Find yourself a friend who will be the brain you need when your’s overloaded.

Live each day as if it is your last…and someday you’ll be right.

Cancer or not, none of us is guaranteed tomorrow. As cliché as it may be, live life to the fullest. Be bold. Make decisions that are courageous and do the unexpected. Don’t be wild and stupid, but remember that you faced cancer, you should enjoy all life has to offer.

And if you pack your non-scan-worrying days with life, you’ll have some amazing memories to look back on when you’re not sure if you’ll live to make any new ones.

Want to read more posts from Jennifer Anand?  Check out all of her weekly posts in Jen’s Corner by clicking here!