Scan day. It happens once every 3 to 4 months for the past 2 and a half years. That’s roughly a dozen scans at this point. And yet, things never seem to get easier.
We should be used to this by now. Waking up at 4 AM on a Monday morning, leaving the house at 5 AM to be down at Children’s Hospital by 6 AM. Between 6 and 7:30, we’re going through the process- getting asked the same questions about Ian’s medical history, signing consent forms, going over the risks of anesthesia, holding his hand until his little eyes drift off to sleep. Ian isn’t allowed anything to eat or drink before his scan, so Mike and I will fast until they take him back for his MRI. Once he’s back there, we go down to the cafeteria and get a bite to eat. Enough to keep us from passing out anyway. Usually, my stomach is in such a knot on these days, I don’t even feel hungry. But I know how I get when I don’t eat, so I force myself. After we eat, we head back up to the waiting area until someone comes and gets us to take us back to the recovery room to see our sweet boy. We help him to wake up from the anesthesia, get him to eat and drink something, get him back in his clothes, sign some more forms, and then head straight to the 9th floor to see his oncologist to get the results.
This is our usual routine. The days leading up to the scan are usually the same too. About 5 days before scan day, I can start to sense the shift. At night, I start tossing and turning. The next night, I’ll wake up randomly in the middle of the night and won’t be able to go back to sleep for about another hour or two. Then this becomes a constant thing at night by day 3. I’m awake all odd hours of the night, trying desperately to sleep, but just not being able to. I stare at my walls and the ceiling. I think about actually getting up and doing something to help me fall asleep, but I feel stuck in place. During the day, a number of things are going on. Sometimes I nap throughout the day. Sometimes anxiety kicks in. My heart is racing. My breathing is uneven. And I can’t shut my mind off. Sometimes depression kicks in and can take two different forms. Sometimes I sit on the couch and do absolutely nothing. I can’t bring myself to get up. Sometimes, and more often, it’s in the form of high functioning. And I’m all over the place. Sometimes I’ll find myself just pacing back and forth because I can’t sit still.
I feel used to our routine by this point of what scan day brings. But sometimes it’s like my subconscious hasn’t adapted to our new “normal.” The last few days have been hard. And it can feel hard to talk to people about it. A lot of people want to tell you to “not think negatively.” For me, it’s not about thinking negatively about what COULD happen. It’s what DID happen. Never in a million years did I think I would be talking to Ian’s PCP about seizure-like episodes. Never in a million years did I think I would be talking to a neurologist about it and him have one right in front of her, prompting us to be admitted to the hospital. Never in a million years did I think the doctors would come in during the middle of the night to tell us they saw lesions and would need to do a more extensive scan the following day. Never in a million years did I think a group of doctors would then show us a scan with multiple tumors on our 2-year-old’s brain. This happened almost 3 years ago now, but it still feels like it just happened yesterday.
Today is March 13. Tomorrow is scan day. Today feels extremely heavy. I’ve learned I can’t just make these feelings go away. Believe me, I’ve tried. I’ve tried to ignore them with unhealthy coping habits. But I’m learning I need to move through it, with it, instead of trying to go around it. Because this journey… it has no other direction.
