On the blog’s Facebook page, I put up a little blurb about our less-than-ideal scan appointment with Goo on Saturday. It was the nurse. She was kind. She was patient. Those are wonderful qualities in a nurse. You know what else is a wonderful quality? Not having to restick my baby over and over because you can’t tap a port that is sticking straight out of her bony body. Or getting an IV placement that doesn’t kink and cause constant pain. Those are SUPER qualities in a nurse. Ours didn’t have them. By the end of it, I was on the verge of making sure she didn’t have a job, either.
Side note: I did not actually try to get her fired. I mean, I did in my head, but that doesn’t count.
Goo has absolutely hated having her port accessed since day one. For non-cancer readers, a brief explanation: chemotherapy patients have surgery to place a small port in their chest. The port is accessed with a (rather large) needle and is used to deliver medication. Some nurses say it doesn’t hurt because it’s so close to the skin. The ones who said that never had a port. They never had cancer. I could punch you in the face and talk all day about how it doesn’t hurt. At least not me. It hurts Goo. And she hates it.
Our oncology nurses are fabulous. They are always one and done – one hit, and that port is accessed and the pain is over. It’s what they do all day, every day. Nurses in diagnostic radiology, or the ER, or other areas, aren’t as used to it. And that’s where we’ve had problems. I am a mama bear when it comes to my babies, especially the one who has suffered through more than any child should have to, in my opinion. She dreads scans because she has to have her port accessed for contrast dye during the MRI.
I dread them because it’s waiting. Waiting to see if it’s gone. Waiting to see if it’s back. Waiting and remembering, well, everything. A reader told me that her friends coined the term, “scanxiety.” It’s perfect. Scans are needles, hours of laying in a giant tube, and floods of memories of the past year.
My scanxiety was totally under control. It always is, because I cry in the shower when no one is looking. But when the nurse missed, and that giant needle had to come out, and go back in, Goo sobbed. She looked at me, tears streaming down her face, and said, “Mama, I hate this. I wish I never had a bump. I wish I never had it because it always makes me have to get needles. And it hurts.”
Everything in me wants to trade places. I would take a thousand needles to save her from one. I wanted to tell her that we didn’t have to do any more, that it’s all over.
But it’s not. So many people, when she finished treatment, shared how excited they were that we were done. And we are – with chemo and radiation. But “remission” is not “done.” It’s needles every month. It’s scans every 3 months. It’s making my sweet girl feel pain that I wish she never had to feel. It’s me checking her facial motion when her mouth makes a weird shape, because I worry that the paralysis is returning. Stupid cancer.
A couple of people have told me that worrying about the scans, or the way her face is moving, or that headache she had two weeks ago, is living in fear. Those people can shut it. I caught her cancer the first time because I was “afraid” when her “ear infection” didn’t get better. I rushed her to the ER when her face stopped moving because I was “afraid” that something was very wrong. Oh, that’s because it WAS very wrong.
Scans, worry, being on top of every change in health – that’s not living in fear. That is the reality of being a cancer parent. That is how we found it the first time – it’s how we do our absolute best to keep it from coming back.
Anyway. We got her on the table for the MRI, and her arm hurt. We had given up on the port and done a traditional IV, and it was painful. She cried, she told me she was scared, and that it hurt. I held her. I fought back my own tears, and told her it would be over soon. Everything will be done and we’ll go home and snuggle. Also, there would be ice cream. I was able to calm her down. We set her up with super cool goggles that let her watch a movie during her scans. And then I spent the next 90 minutes of her MRI trying to hide my face and hold back the tears. I’m due for a good cry anyway. During treatment, every 2-3 weeks I’d have a total tear fest in the van on the way to the hospital while Goo slept in the back seat and nobody else was around. Now I go 3 months without needing a tear fest.
I’m basically the poster child for emotional stability. I blame scanxiety.