Ana is scheduled for her first post-transplant MRI tomorrow at 9:45 a.m. She’ll get her weekly labs drawn at Benedictine before then, and we may have time to inhale breakfast in between the labs and the scan. To say I’m nervous is an understatement.
I’m not scared of the test, or of Ana’s reaction. Ana is brave. She is strong. She may be afraid of that big, loud MRI machine, but she’ll try her best to do what needs to be done – as she always has, even from the very first day. Even so, it may actually not happen if she’s not able to stay still for the entire scan – and I’m totally okay with that. I’m pretty sure she’ll need an I.V. to get the contrast, but even that doesn’t worry me (much).
However, I’m scared shitless about what this test is going to bring up for me. Specifically, this memory of Ana about to get a triphasic CT scan at Sloan-Kettering back in November:
I take so many pictures these days, that I’ve literally chronicled the very memories I’m most terrified of. I remember this picture and this day like it was yesterday. I remember Sloan Kettering’s pediatric cancer center with a kind of sickening dread and sorrow – how the children rolled their I.V.’s around from toy station to toy station, most of them unconcerned with their bald heads. How Ana wouldn’t take her hat off. How we hoped against hope that the surgeon at Sloan could resect the tumor and save her liver, sparing her a lifetime of anti-rejection medication. That’s the day we found out there was no way to save her liver, and the day we realized that we’d put her through chemotherapy and hair loss for absolutely nothing.
And that damn donut hole of a machine is what looms so large in my memory. She didn’t flinch, except when they put the I.V. in her arm because it was an extra big needle (the special “triphasic scan” they did at Sloan required they push contrast through her vein at a superfast speed – thus they needed to use a big catheter). She’d cried, but stayed still. She’d glared at the nurse who put the I.V. in but didn’t say a word. She’d been so starved that she’d gulped down oral contrast like it was grape juice, only to feel sick ten minutes later. It was one of the longest, saddest days of my life.
And tomorrow I’ll have to face that damn machine again. Well, not THAT machine, but one that looks very much like it. But worse – I’ll have to face what that machine means. Every other scan she’s gotten in the past was pre-transplant – meaning, it brought bad news upon bad news.
CT Scan 1: “We’re sorry to tell you that she has a giant tumor on her liver. Yes it is most likely malignant.”
CT Scan 2: “We’re sorry to tell you that the tumor is invading her portal vein and she most likely needs a liver transplant.”
MRI 1: “We’re sorry to tell you that the tumor has grown.”
CT Scan 3: “We’re sorry to tell you that, no, after two months of chemotherapy her liver cannot be saved.”
MRI 2: “We’ve mapped the veins of her liver – she is now listed for transplant”
Running away from these scans is not an option, obviously. Hiding in a closet behind bins of old clothes won’t save me from reality (though it has occurred to me). And it’s not like I’m not filled with optimism. Ana is doing great. She’s enjoying the summer so far. She’s very much back to her old self and except for the steroid side effects, she is pretty happy with her life right now.
We need to peer inside and make sure everything’s okay. BUT…(you knew there was a “but”, right?) I know a lot more now than I did when Ana got that first CT scan in Kingston Hospital last August. And after all that Ana’s been through, I’d be a fool not to feel somewhat apprehensive about what they’ll find on that scan tomorrow. Dr. Hochberg has told us from the very beginning that this tumor rarely recurs. The “cure” for Ana’s rare form of cancer – if it was really a true cancer – is complete removal of the tumor.
But what was it REALLY that she had? What causes cells to just…grow…to the size of a 10 lb melon in an 11-year-old’s body? Why did it happen in the first place? No one could ever answer that question for us. We’ll likely never know. The MRI machine is not my enemy. But it is a sort of doorway into a terrible place that we only just recently emerged from. Whenever I see it (or its close cousin the CT scan), I’m reminded of that other world that we were flung into with Ana’s first scan – tests, procedures, hospital stays, home infusion nurses, the fear and desperation I lived with for so many months. And it just takes one bad scan for that door to open again – just one.
That’s why I’m so afraid of tomorrow. So..you know the drill..prayers, positive thoughts, white light. And…if you’ve gotten this far (or even if you haven’t) …thanks for listening 🙂