Scanxiety. I've written about it before but it's so overwhelming, so all-encompassing that it bears repeating. I can't imagine there will ever be a time where scans don't illicit this kind of extreme emotional state. That said, the particulars of the anxiety are different every time.
This time I was panic-stricken because two nights before scan day Benjamin began to have coughing fits when he'd be lying down at night and first thing in the morning. They'd dissipate throughout the day but that didn't help as his scans were first thing in the morning and he'd of course have to be lying down. The plan was for him to be without any kind of anesthesia or sedative so it's not as though coughing would or could be hindered in any way. I didn't know what the implications would be if he were to experience a coughing fit while in the scanner but if I had to wager a guess, the techs wouldn't be able to get clear images for the radiologist to be able to accurately analyze and interpret. I also knew the only reason we got a timely appointment was because we're lucky enough that Benjamin has been successful in the past in having unmedicated scans but that said, it was still booked months out. We didn't have time to wait months to re-book and frankly I didn't know that I would have had the strength to wait months only to have to gear up for the scans and the torturous waiting period that follows once again.
The night before scan day I thought I knew all of the sources of my anxiety. What I've learned on this journey is that whenever you think you know anything is exactly when you get thrown for a loop. When David came upstairs after wrapping up his work day in the basement he casually mentioned that the meeting booked for the following morning that he'd tried to move was going ahead as planned and that he wouldn't be able to join us at the hospital. I felt as thought the wind had been knocked out of me. I know I can do hospital appointments on my own with Benjamin but after doing three nights on my own when he'd had his fever, to do a milestone appointment alone when I knew I didn't have to as far as hospital regulations went, broke me. I felt angry, disappointed, frustrated. The trauma of those early diagnosis days came rushing back.
I pulled myself together quickly because I had no choice. The kids were sitting just a few feet away eating dinner. I put on my best upbeat and happy tone as I told Benjamin that it would be just him and I for scan day. I expected him to react with disappointment and sadness but shame on me for not giving credit where it's due. Benjamin greeted the news excitedly, saying, "That's ok! It'll be a Mummy and Benjamin hospital adventure! We haven't had one of those in a while!". It's amazing to me just how resilient he is. In actuality it had been only two weeks since we'd had three "Mummy and Benjamin" hospital adventures when he'd had his fever, something that was already a distant memory to him was still so fresh, so raw for me. With his positive reaction came the next wave of emotions, guilt, awe and gratitude.
Lucky for us my mum had come to stay for the week so I didn't have a worry in the world about Ella's care the next morning as she adores Grandma. David suggested joining us for the drive to the hospital. He would then walk down to his office and Benjamin and I would go up to the Diagnostic Imaging floor. I agreed reluctantly worrying that when it came down to it that Benjamin might find it hard to say goodbye to Daddy in the hospital lobby but that turned out to be a wasted worry. The next morning in the hospital atrium, dressed in his skeleton PJs and skull socks to make the Diagnostic Imaging techs laugh, Benjamin gave David a huge hug and a kiss, grabbed my hand and excitedly headed towards the elevator bank, pressing the button and guessing which one would open its doors to take us to the second floor.
The empty hallways echoed with our footsteps as it wasn't even 7:00AM. The receptionist hadn't yet taken her seat behind the check-in desk and the silver accordion-like barricade was still closed across the top indicating that we'd arrived before business hours. We waited just a few minutes, I ran through all of the usual questions - name, address, phone number, email address, patient's birthday, has your child been exposed to X, Y, Z, have you ever been told your child has A, B, C... I was given Benjamin's hospital bracelet and before we knew it we were being walked over to the scale and the ruler to check Benjamin's weight and height before being lead into our private room with two armchairs and a private washroom.
I got Benjamin set up on my lap with his tablet so that I could go through the second set of questions for the morning with the tech - last chemotherapy treatment, dates of past surgeries including biopsies, list of medications, etc. She then went over what we could expect from our appointment. First the nurse would come to access Benjamin's port and they would do a blood draw. Next they would inject a sugar solution into the line that would allow the cancer cells to show up on the scans. Once that was injected it was important to keep Benjamin warm, still and quiet so as not to unnecessarily burn off any of the sugar solution while it took effect over a forty-five minute period. When he asked if he could sit on my lap in the chair the tech told him that unfortunately he had to sit in his own seat but that I could sit in the one right next to him. She turned to me to explain that it was because he was radioactive and that it could be transferred to me. My heart broke. When we're inside the four walls of the hospital, all I want to do is to meet any and all of his requests for comfort. He was wrapped in warmed blankets, we reclined his chair and set up a small table in front so that he could watch his movie of choice, A Bug's Life. No gaming as it required too much movement. She dimmed the lights and we were left to sit in the darkened room, him entranced by the magic of Pixar and me with a whirlwind of anxious thoughts.
The screen of my phone lit up with a message from Sexy McHotpants AKA David. It's how he programmed his number into my phone when we started dating and I've never changed it. It still makes me smile when I see that name. His message hurt my heart as he was writing to say that he'd fought tears the whole walk to work. I knew he desperately wanted to be with us but that he also needed to be in that meeting that morning. Upon reflection the night before I hadn't given much weight to how difficult the scheduling conflict was for him; I'd been primarily concerned with Benjamin being without us both and me being without my biggest source of love and support, the only other person in the world who really understands what it means to be on this particular path.
Forty-five minutes later the tech came in. She asked Benjamin to use the bathroom and then walked us down the hall to the room with the scanner. I lifted him up onto the board and took off his shoes so that the tech could begin the process of immobilizing him. She carefully applied cotton ball fluff to the tape that would touch his forehead as she wrapped it around once, twice, three times to keep him absolutely still. Out came the mini sloped foam ramps where he'd rest his arms. the rolled blankets to lock his legs into position. The tape around his feet. Finally the large velcro band carefully positioned to allow the nurse access to his port line for the contrast dye and then pulled tightly around his midsection.
Unlike the two times before, the tech didn't stay in the room at the head of the scanner to talk to Benjamin and ensure he wasn't moving. I was asked to stand behind what looked like a plexiglass easel. And just like that it was just the two of us in the cold of the scanner room. I began watching the digital numbers on the countdown clock. As they went down my anxiety went up. Twice I heard my sweet boy's voice call out, "Mama? Mama?" I called back that I was still in the room and promised to stay there the whole time. There was so much more I wanted to say. I wanted to go to him. To hold his hand. To stroke his face. To reassure him with a touch that I was there and that I wasn't going anywhere. My voice was seemingly enough to quiet his worry and he laid still (mostly - the tech had to come out once to remind him not to move) and quiet for the remainder of his time in the scanner.
Finally, FINALLY, the countdown clock hit 00:00. I was told I could move to the head of the scanner and speak to him while they verified that the images captured were clear. Like the source of light and inspiration that he is, Benjamin was smiling, giggling and happily chatting away to me. I told him that the sheet around his head looked like a party hat because of its cone shape. I took a picture to show him and he burst into that contagious laugh of his.
The tech returned to tell us that the images were perfect and that Benjamin had done a great job. The board slid forward and as it did I walked around to meet him on the other side. Once the many restraints were removed he sat up and gave a big grin and a thumbs up. Relief. If only for the moment because up next was the undefined waiting period as the results call could come any day, any time of day.
As a reward for Benjamin and a distraction for me I offered him three choices to celebrate: a picnic by the lake, his very first trip to Canada's Wonderland or spending the day at the Toronto Zoo. Without hesitation he chose the zoo. I didn't tell him this but I was relieved at his choice. Since his diagnosis it had been our tradition to see the snakes before scans. The logic behind it was two-fold: Benjamin loves the zoo and is especially fascinated by the snakes and I have a major snake phobia so taking him to see them is my offering to the universe, my plea for improved results. If Benjamin can fight cancer I can certainly conquer this fear. With school in full swing we hadn't had the chance to do it this time around and as a superstitious person I was carrying some serious mum guilt around not making a zoo visit a priority.
We shared an incredible day together. It was the first time we'd ever gone just the two of us. The first time I didn't bring a stroller or a wagon. We spent four hours walking through most of the exhibits, including ALL visiting all of the snakes. For the first time we saw the red panda, an animal Benjamin spotted quickly and easily while explaining to me (and a few other adults who had walked over to listen after hearing his excitement) all about their habits and where they lived in the wild. Truthfully I'm not even sure I knew that the red panda even existed. We saw the new baby orangutan breastfeeding. The kangaroos were out and about and Benjamin dissolved into a fit of giggles watching one of them kick up dust at another one. We walked over the bridge to look down at the open-mouthed fish below. Whenever these fish hear voices they swim toward it and open their mouths - I'm not sure if they're used to being fed by zoo visitors but it's our best guess. We saw the camels which Benjamin describes laughingly as having done a "bum dance with their tails" for us. We sat on all of the statues - the hippo, the camel, the horse and the Komodo dragon. We went into the Kid Zone and had it all to ourselves. The benefit of a midday visit on a Tuesday when school is in session! So many happy memories made together at the zoo. It's times like these that renew my strength to advocate for him and to fight alongside him.
We arrived home full of Häagen-Dazs popsicles and stories. Full, happy hearts. I basked in this feeling and willed it to last the rest of the evening as I knew come morning the second part of scanxiety would set in. The waiting. The wishing for good news. The willing for the phone to ring while simultaneously fearing it. Nine days in and here we are. Still waiting. Still wishing. Still hoping. Still working hard to put one foot in front of the other. Still wearing sunglasses any time I'm in public because I can't remember what it feels like not to be on the brink of tears. Fingers, toes and everything crossed because there's nothing else we can do while we wait.
Comments