Tethered Balloons: Vanity, Scans and Fear

I’ve been home from the hospital now for over a week, settling back into my life, back into work and figuring out how to deal with my new reality. There are a few things that follow me around like balloons tethered to my belt. Vanity, Scans, and Fear…I’ll elaborate.

Vanity is real. I take care of myself and try to look my best. Right now, I look different. Period. There is no avoiding it, it will likely go away, eventually, but it’s real and it’s staring me in the mirror every time I walk into the bathroom. My face is swollen from the steroids, which I’m on for another 8 days. They call it moon face, which is accurate. And I have facial hair, seriously! Additionally, the area directly under my eyes is swollen and dark, like I’ve been punched. I think this is from the steroids and the surgery, and hopefully it will fade as well. Finally, I have lost all muscle tone. What is most depressing about that is in early June I was the fittest I had been in years and finally feeling good about my strength and endurance. That is long, long gone and I can’t do anything about it until I am released by the surgeon to exercise, in another 3 weeks or so. So every morning I look at myself and almost cry. I am working on changing the script in my head , but it’s one of the hardest things I’ve ever done. I think it’s hard because it’s not by my own actions, it’s totally out of my control, and accepting that I look this way is hard. Not knowing when and if I’ll return to the me I’ve seen in the mirror for 47 years.

Scans. I’ve had enough in this summer to last a life time. Yet, I need more. When Dr. McDonald told me I needed a full spinal scan to look for more chordomas, I was sad. Then the order came through and they want 3 scans: spinal and sacrum MRI and CT scan of my chest. I keep reacting to it…why so many? That’s a lot of spots to be checking. Why did you say 1 and order 3? My logical brain says he’s merely acting with an abundance of caution. My lizard brain wonders what he knows that he hasn’t said and thinks the worst.

Which leads me to fear. But first, the facts are this: none of this is life threatening right now. We’ve found it all early. 80% success rate with radiation for his cancer to never return. And yet, I’m scared. Real scared. All of the facts are actual facts AND there are those scans and the lingering words of ‘the spots we saw are in tricky places.’ And I’ve had a roller-coaster of diagnosis this summer. Also, never google chordoma. Just don’t! Plus, the world is crazy with Covid. I’m paranoid about going out, anywhere. I do not have nice thoughts about non-mask wearing people. So I’m trapped at home with my moon face and tethered balloons. I’m a ball of fun, just ask Andy. Sadly, with the summer I’ve had I find myself expecting the worst not the best. That is out of character for me, and I don’t like it.

So how do I lose these balloons. I’m not sure. I think recognizing them is important. I have to name them and discussing them helps process the information. When I found out about the extra scans and radiation, actually, while I was still in the hospital, I was in more in the hide-in-your-iPad, binge watch shows, and don’t acknowledge what’s going on mode. Pro-tip, it doesn’t go away when you do that.

In my deeper thinking moments that aren’t at 2 am, it all begs the question, what other balloons have I carried around? What other balloons am I carrying around that have nothing to do with my health concerns. What about you? Any balloons? Really the bigger questions is, what can I learn from this that helps me live a richer life when it’s all over?