It’s difficult to thrive when there’s so much on my mind but none of it wants to come out. I’ve started this particular post several times – over several different days – yet words are just spinning in my head instead of flowing onto the screen of my award-winning* blog.
I’ve resumed my world-famous defense mechanism of going into hiding. Not answering the phone. Not responding to messages. Muttering under my breath and taking out my anger on non-essential insects. Honestly, we do have a ridiculous amount of moths around here right now – and since Ben and Madeline are seriously freaked out by any type of flying bug (it’s borderline phobic – like my issue with clowns and ticks) – I’ve been doing a lot of bug killing lately.
My homicidal tirade hasn’t helped to elevate my mood because I’m thinking of that spot. That damn spot. The spot that might be nothing or the spot that might be recurrent Neuroblastoma. Ben’s scans were last week. And the time in between that last scan and when the doctor comes in to discuss the results are like the preparation of ripping off a band-aid. JUST TELL ME THE RESULTS OR I’M GOING TO GO MAD! So, I’m all prepared to lose some hair where the sticky bits of the band-aid has adhered to my skin. I close my eyes tight and grab the loosest end, getting ready for the sting of ripping hair out from the root. I even turn my head a bit like there’s a physical blow accompanying the follicular extraction. When the doc says “No Evidence of Disease,” the sigh of relief gives the sensation of “that wasn’t so bad! Yay! I can heal!” When the doctor says “Relapse” the fallout is horrendous, but at least we know that we need to come up with a plan. But when the doctor says “we don’t know what that is but we’ll have to wait five weeks to do anything about it,” well, I’m thinking this is a little worse than “relapse.” At least, that’s how it feels right now. I didn’t get the luxury of relief and I wasn’t told I needed to get out my armor again. I’m in a holding pattern. And it sucks.
So, there’s a spot. It’s near the area where he relapsed last time (near his collarbone on the left hand side.) Most of his major cancer activity has been on the left side. Left adrenal gland. Left rib. Left neck. Left collarbone.
Crap.
There is a possibility that it’s nothing. Of course, this is what I’m hoping for. But the wait until we can scan him again is excruciating. Meanwhile, when the doctor explained it to Ben, he said “I really feel that this is nothing.” And I’m not sure, but I think he’s forgotten about it. He’s focusing on finishing school this week and going to camp the first weekend in June. He’s moving on. I’m trying to take my cues from him, but I’m not nearly as strong as he is.
So… that’s that. And until I know what that damn spot is, I’m going to be crazier than usual. I’m trying really hard to appreciate each moment. I am. But in watching him this very minute as he tries to get through a morning of school… his nearly 13-year-old mind looking forward to the break of summer… the essay he just wrote about wanting to create video games when he grows up… the kind soul that personifies my darling son….
I’ve simply lost my tolerance when it comes to this stupid cancer nonsense. I know it thrives on sucking the lives out of the patient and the caregivers, but I feel we’ve given enough.
Enough already.
Enough.
*This blog hasn’t won any awards except in my mind. 🙂
Out, damn spot indeed! Surrounding you and Ben and Mad with good wishes and hope while you wait
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You’ve definitely given enough! Enough time, enough energy, enough money, enough of his childhood. Enough already!!! ❤
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Sarah I know your pain. Kasey has scans tomorrow. First it was “relapse” then we will scan again in 2 months. Ugh is all I can say. Praying for you and Ben. Miss you!!
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Sending you much needed strength and good energy Sarah. No one should have to be this strong but you have certainly perfected it with Ben leading the way. You keep your chin up, that spot is going to be gone soon.
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((hugs)) You and family are loved and being prayed for by friends and even strangers… ❤
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i love you guys
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I was at a music festival earlier this month and there is a charity that had a booth set up with a Minivan parked next to it. The charity name? Fxck Cancer! I wanted that van SO much. Holding you up from afar, Sarah.
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I was at a music festival earlier this month and there is a charity that had a booth set up with a Minivan parked next to it. The charity name? Fxck Cancer! I wanted that van SO much. Holding you up from afar, Sarah.
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