This post was hard for me to write. Actually, I have had to come back to it a few times. I started this on Monday morning, and it’s now Wednesday night.
Most days I am cool-as-a-cucumber. I am positive and hopeful! But you know that those days leading up to a scan or an infusion can make me a bit of a basket case. Just ask Andrew 
It’s been hard for me to show you that I have weak moments. But I think it’s crucial for me to be real with you. Show you that treatment days aren’t the only stress inducing days. Sometimes there are moments of stress that come when I least expect it, or sometimes there are days I know are coming up that I can prepare for; either way, cancer is always there, lingering. But when I see you next, hopefully, I will have my reassuring smile, will have compartmentalized these feelings, and will have reminded myself that life still goes on all around me — that’s a beautiful thing!
So here ya go:
I stayed over in Boston last night because my scans are first thing this morning. And now I am sitting waiting for my CT scans to start. While I wait, I have to drink oral contrast, and during the scan, I will also do an IV contrast as well. For the oral contrast, I have to drink 2 bottles of contrast “water” in an hour. I learned early on that the flavors they offer taste horrible, so I always get one bottle of room temp and one bottle of cold plain water. The contrast itself is nearly flavor neutral. You’re not supposed to drink the fluid too fast or too slow; just constant sipping for an hour. CT scans are actually pretty quick and easy once you’re inside the scan room. But a few hours after the scans I don’t feel quite right. All of those contrasts make my tummy angry. Have I already mentioned all of this before? I can’t remember….N.E.Ways….
With my last scans, I knew in my heart that things were shrinking. I could feel the tumor on my sternum shrinking. And sure enough, there was significant SHRINKAGE. I went into those scans with a lot of confidence. Unfortunately today, I have to dig deep to find that confidence. I am hopeful that when I get the results on Thursday that I will have another excellent report, but I can’t help but feel very nervous this time.
This anxiety leading up to a scan or during a scan is known as scanxiety. Catchy isn’t it? Some women say they have scanxiety every time they have imaging done. I don’t. Not always. But this time I definitely do.
I think there are a few things at play that are making me feel anxious. One is that a couple of weeks ago my back started aching in a new place. It’s intermittent but it feels like the same type of ache I felt previously when I was first diagnosed. The pain is easily controlled with OTC meds yet I can’t help but wonder what’s happening there. Aches and pains pop-up and I have a strategy for dealing with these moments, but it takes some effort to self-talk my way into a positive headspace.
Another part of my anxiety today is stemming from insurance, preauthorizations, etc., etc. If something doesn’t get approved at the right time, for imaging or infusion or doctors visits or surgery, I fear what that bill will look like.
I had these scans scheduled a while ago, and there was a system delay/glitch in getting my insurance activated and my scans preauthorized. Throughout a couple of days, multiple emails and phone calls, and I am reassured that it should be okay*. But what if this one time it isn’t? A scan is a few thousand dollars, and my daily medication and infusions cost tens of thousands each month. I can’t help but ask questions like: will I ever have to make a choice to receive treatment or not because insurance will deny my preauthorization? Let’s hope not! *at the time of publishing this preauthorization went through!*
In addition to the aches and the insurance, anxiety is coming from one of my communities. I have a small community of mets friends, some local, some online; women like me living with MBC. Most are around my age, have kids, careers, love to travel, or are empowered by information, etc. Our stories overlap in so many ways.
Something I have learned from these women is that MBC isn’t one of those fast moving cancers, until it is. Just last week one of my online friends passed away. She was diagnosed a little while before me and had tried immunotherapy (a different kind). It didn’t work. She had what seemed like a small complication that landed her in the hospital, and she didn’t come home. Like me, she was hopeful, intelligent, and was seeking great care. My friend’s life and death reminded me again that there is still no cure. Immunotherapy is cutting edge, but there are still trials like the one I am in because we don’t have the answers yet. I know her story isn’t my story, but I’d be damned if it didn’t hit close to home. What’s to say this couldn’t happen to me? Jessica, you will be so very missed by me. I appreciate the light and intelligence you shared with me when I was first diagnosed. RIP.
It’s hard to write all of this out. It feels big to be so open. Embarrasing in a way. But this is just another part of cancer. It’s a part I don’t show often. I don’t feel strong or courageous, I feel like I am doing all I know how to do when I hit a roadblock: lean on those that I love and keep pressing on.
Hannah in CancerLand 