Musings · Post-Treatment

Laura, The Patron Saint of Scanxiety.

My apologies to St. Dymphna. She is actually the patron saint of depression and anxiety. But, I might be giving her a run for her money these days.

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COVID isn’t helping, but it’s not just about a viral infection that could kill me, what with the damage to my lungs from the tumors that grew insidiously in there, the high blood pressure left over from my years on Cabo, or the poor circulation system with which I’ve been blessed. OK, it might be affecting me more than I’m admitting.

But the monster source of the pit in my stomach is that I’m having my first post-treatment scans on Friday. I get my results the following Friday – longer wait than usual, but again, COVID times, and I’m not as urgent as most of Dr. V’s other patients, although I’d like to think I’m the most special.

“Scanxiety” is a common phrase among cancer patients and survivors, and it’s exactly what you think it is – anxiety around scans, getting them and getting the results from them. CTs, which is what I most frequently get, aren’t super uncomfortable, so I don’t really get anxious about the actual scan procedure anymore. The rush of contrast through my veins isn’t pleasant, and I want to puke sometimes after chugging three bottles of water for scan prep, not to mention desperately have to pee by the time the scan time arrives, but it’s not as uncomfortable for me as MRIs or bone scans (both of which – 0 out of 5, do not recommend). It’s the waiting for the scan results that gets to me.

I haven’t battled this much scanxiety for a while, and I know exactly why. I’ve been without my security blanket of Cabo since April. I think I’m doing okay, but I don’t trust my body anymore. My body has done incredible, miraculous things, but it’s also tried to kill me. Once you’ve tried to murder me, you lose my trust, oh body of mine. I thought I was doing okay in the summer of 2016 too after my nephrectomy+++, only to have my oncologist at UCLA breeze into the room with a “Well, your cancer’s back.” So, I have no trust. I really don’t know if I ever will.

I had a discussion today with a friend who is also a HLRCC patient who was very concerned when she talked to another stage IV HLRCC patient’s caregiver. The caregiver told my friend that her husband’s oncologist – a very well respected, well known RCC specialist – said that he had never seen a metastatic HLRCC patient last more than four to five years. Obviously, my friend was panicked by this, and she reached out to me to see if I had ever heard the same. I thought, “Well, that’s news to me. I’m four years out and NED, so I’ll be sure to send him a card next May.” But I felt for a brief instant that familiar course of fear through my veins. HLRCC is a tricky beast, and I know this intimately.

I reminded myself though how many people are fighting for us – the researchers and doctors I’ve met, the incredible people at Exelixis, the Driven to Cure foundation and the NIH. It’s an aggressive disease, but there are new treatments coming out all the time. Just in the four years since I was diagnosed, there’s been multiple drugs approved for renal cell carcinoma (not exactly HLRCC approved, but still – promise and progress) and how the metastatic RCC survival rate has doubled. I reminded myself that Dr. V sounded confident I could go right back on Cabo if it comes back.

I reminded myself that I had to practice what I preach. I have to hang on to hope. If I give up hope, what is the point of even fighting? I’ve faced bad news before. Even if next week is bad news, it’s not the end of the world.

I’ll probably be fine next week. I’m probably working myself up over nothing. Even though I know this, I’ll still be anxious until next Friday. It’s just how it is with scanxiety. Cancer never lets you forget your humility.

But hope? I can’t forget her either.

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