One Year After

Facing fear

Sometimes it takes a while for the words to come.

Violet and I got back from Vancouver on Friday. It is now Tuesday, and I have been relatively silent about our trip. Not for a lack of things to say. I was sick. I was distracted. But mostly, I wasn’t sure how to address it.

We were in Vancouver for Violet’s one-year scans. One. Year. Although we have been going every three months for check-ups, this was the full meal deal – the checkpoint, the testing ground to see if everything is still on track. If we are still “in the clear”.

And she passed with flying colors.

The trip was a big one, for lots of reasons, and it took on the depth and breadth and color of a vivid Autumn afternoon – hot sunshine, cool breeze, bright hues, piercing light, soft leaves falling all around you. You know, intense. All things in a moment. That kind of trip.

There was the drive. Wet on the highway, slipping tires and blinding water whipping up from semi-truck tires. Then calm and striking, blue sky against emerald pines brushed with pigments of ochre and crimson and honeyed gold. Breathtaking. Deep valleys lit with the tannins of amber, like you could taste the scenery itself – warm cider and caramel.

We stayed at Ronald McDonald House this time. They found us a room, last minute (as Violet says, “it’s so sad that it’s so hard to get a room at RMH and a parking spot at the hospital – those places should never be full.”) So instead of imposing ourselves on my brother’s couch mid-week while he tries to work from home, we took up residence at our old stompin’ ground for three nights. I was nervous, I’ll be honest. RMH is a place of emotion not to be ignored. There are same seriously sad stories forming within those walls, and the Survivor Guilt was present in full force when we entered its doors.

But we were greeted with familiar faces I didn’t expect to see. Turnover is big in a place like that, where the intensity can eat away at the staff’s energy and ability to cope, no doubt. But it felt familiar and safe and warm, and Violet bolted immediately toward the Lego room and the foosball table, acting as if she owned the place (and joining all the other kids with the same comfortable sense of ownership of the House that becomes home after months of treatment).

The first night we had free tacos sponsored by a local business and played Animal Crossing in our room just like old times. “I’ve been missing this, Mommy. I’m glad we’re here.” And I had the chance to chat with another oncology mom that I have been connected to for months through a Facebook group but have never personally met. And it was heavy, because it was an opportunity to share a piece of evidence with someone who needed it. There is hope. Kids get better. Tragedy isn’t a given, and it’s ok to look on the bright side.

A note about that, however, and a preliminary for another blog post, no doubt. During that conversation, I realized in vivid detail just how “out of the box” I can be. How obnoxious. And how some may interpret my positivity as poisonous. Timing is everything, and when you are suffering, hearing someone tell you to put a smile on your face is worth a punch in the throat. I get it. At RMH, you are reminded in every single way how life can hand you things that make you feel utterly disempowered. Tragedy that seems like it can’t be interpreted as anything but unimaginably awful. Having gone through what I have with Violet, I can assure you – I acknowledge this to the depths of my soul. Childhood cancer is just about as awful as it gets. And having watched women I love, children I love, go through the unimaginable, there is very little wiggle room to “see the bright side”.

And yet, there is always space. Always a light, somewhere. Always love waiting in the wings. Always gratitude for something available.

For some reason, when I walk through those doors, gratitude flows through me like rain. And I felt it so powerfully that day that I had to spew my obnoxious appreciation for life all over this poor woman. But I think she felt it. I think maybe she needed it. I think sometimes we all do.

Honestly, our own interpretation of things is the only real, solid tool we have in our tool chest. Our only real “control” in this life. Sometimes it is way easier than others to utilize it. But on this trip, I was armed with expectation for the ideal. No scanxiety, which I must say, is a miracle in and of itself.

Maybe it was the caramel air on the drive. Maybe it was the tacos. I don’t know, but I did everything I could not to overthink it.

On Wednesday we went in for Violet’s MIBG injection. To be honest, this is the part of these scan-trips we both fear more than anything. The dreaded IV insertion. Violet’s PTSD stems from one moment in the ICU at the beginning of treatment when the team jammed a PIC line into her arm without warning. To this day, needle trauma owns her in a way that destroys me. She loses sleep for months before, not because of the scan itself or the threat of bad news, but because getting that poke scares the complete living shit out of her.

To make a long story short, we have suspected since her ICU treatment that she is allergic to the contrast that they inject in her midway through the scans to get detailed accuracy on the pictures. She had a sever rash, so throughout her treatment they have not administered again this for that reason. However, that has meant “partial” scans are all we have been going on. This time, our oncologist had said we were going to try. The details are important, especially at this point, to know if there is any hint of something we need to address.

In Violet’s mind, this was the literal end of the world. The contrast to her meant imminent death. It meant pain and suffering and going to school with a full body inflammation. So, when we got to the Nuclear Imaging room and they told her that their notes said not to use the contrast, she just about fainted with relief. It meant she didn’t need a full IV, but a smaller “butterfly” needle. It meant she didn’t need to keep an IV in overnight. It meant that she didn’t need to get the ”yucky stuff” pumped into her that makes her feel like she is having a panic attack. It meant no ugly outbreak on her face at middle school.

So, she got through the poke with the message from the nurses that “at least it isn’t an IV”. She found the courage and got the injection of radioactive iodine that would give us the pictures the next day, albeit subpar in information. I assumed the oncologist had changed her mind and I trusted the process. I assumed the risk of a reaction was too great to do the full scan after all.

We went out and celebrated our good fortune. We went to Toys R Us to get her “poke reward.” She wanted to go to the Disney Store in Metrotown to get a Stitch toy – her favorite – but opted for a closer retailer to avoid traffic. Low and behold, when we walked through the doors, there was a Stitch talking purse waiting for her at the entrance. Perfect. While we were out, I got a text from the RMH app saying that there were a few tickets to the hockey game that night available first come first serve at the front desk. “Crap, Mom, we won’t get back in time. Someone will get them for sure.”

“What’s meant to be, Violet.”

Two hours later, we checked anyway. “Yes, there are two left. Would you like to go? It’s the home opener against the Oilers.”

I KNOW IT IS! “Yes, that would be great. Thank you…..thank you.”

I took her to the Old Spaghetti Factory for all you can eat bread (a revelation) and we wandered around Gastown where I pointed out all the places Matt and I used to frequent when we lived down the street. It was like going home, and we kicked up the yellow leaves that pooled in the gutters along the cobblestone, giggling like children. Well, I giggled anyway. She was a little mature for that.

We almost didn’t go. We were both a bit under the weather and exhausted, and the idea of being among loud mobs of people until late wasn’t really appealing to Violet. But she knew that I was beside myself about the opportunity, so she conceded, even though our seats were up in the nosebleeds.

Turns out, the nosebleeds were actually….a private Club Suite.

Also turns out, the score ended up 8-1 for the Canucks. And the Club Suite came with free ice cream. And private hugs from Fin. And endless popcorn. And its own bathroom and concierge.

Turns out, there are perks to childhood cancer, as another oncology mom and I joked about…because we can do that. We went through it. Dark humour – another perk.

The next day we bounced into the scan room lit up with appreciation for how seamlessly things were working out for us. We got their early with hopes we could nail the test, skip over to audiology and cardiology and oncology for our appointments, and get out in enough time to pick up treats on the way to my brother’s for dinner.

But there was a doctor I didn’t recognize waiting for us. She was kind and introduced herself to Violet. “I’m from Ireland, do you know where that is?”

“I’m a Quinn,” she said with typical sass.

“Of course, I should’ve known.” Then she turned to me. “Can we talk?” Never, ever a good line. “Dr. Harvey was just here and noticed Violet on the chart. She asked if we were doing contrast today.”

“I’m NOT DOING IT!” Violet shouted, not looking up from her iPhone. I touched her knee, giving her a supportive pat. We already figured this out.

“The thing is,” she said, “there was a bit of a miscommunication. The team down here only had her file from her previous scans that said we wouldn’t do contrast due to her allergy. But Dr. Harvey really wants to try. These scans are so important. I’m the one that will be reading them, and it would help me so much to know down to the finer details of what’s going on in her body.”

She began explaining the rationale, but Violet had already heard enough, and screamed at the top of her lungs. “THEY TOLD ME I DIDN’T HAVE TO!! YOU PROMISED! I’D RATHER GET CANCER AGAIN THEN DO THE CONTRAST! YOU CAN’T MAKE ME! I’LL RUN AWAY!” To which she did, down the hall, almost out the doors of the hospital.

I didn’t follow. I started to cry. Deep down, I suspected this the day before, but didn’t push. All through her treatment I trusted the process and the system and the advice of the professionals. I felt like this time I had let her down. The doctor was deeply apologetic. They understand trauma. They understood what they were about to ask of her and me. It broke them. I saw it in their eyes.

The technician asked if I wanted her to try to talk to Violet. I said there was likely nothing she could say. Violet is officially the most stubborn person on the planet, and if she has her mind set on something, there is just no way around it. But I knew the gravity of it, and I knew that the only way to have a chance at getting it done was if Violet and I used the tools we had developed over these past couple of years.

“I’ll try,” I said. She nodded. She knew that the odds were slim, but she was hopeful.

I had one chance and I knew it.

I found her in the hall curled up in the corner. She was shaking. She looked up at me with severe determination. “NO.” She said it bluntly and decisively. “I won’t. I won’t, Mom.”

I started to open my mouth to give her a speech about the importance of it but changed my mind. My heart hurt. A tear rolled down my cheek. She looked up at me and saw the drop on my skin and something softened. It was an opening - my one chance.

“There is no way to make this fair, Violet. This is a completely unfair thing to ask of you, and I know it. We promised you, and we’ve broken your trust, and of all the things in the world to put on you, I know how awful this is. I know how scared you are. And when I think about the times in my life that I have had to face fears like this, they have always, at least, been on my own terms. And this isn’t. This time, this is for me.”

She looked angry and terrified and deeply sympathetic, all at the same time.

“I need you to do this for me, this time, Violet. It hurts me more than I can possibly say to have to ask something like this of you. I hate asking anybody for anything. But I need you to do this. It’s too important, or I would never ask. I need this one thing from you, ok? Is there any way you can do this? Anything that I can do to help? To make it better? I’m desperate.”

It was there, right on her face. The secret key to conquering her fear. The secret that’s worked for me so many times in life. If it was for someone else – someone she loved – she could do it. And I know that there’s no one else on earth she would find that kind of courage for.

“Can I get another prize?” she asked.

“You can get a pony,” I said.

“Why would I want a pony?’

We laughed. I cried, more. Then, eventually, she got up and followed the team into the room.

And I watched her, sitting there in that chair while they prepped the IV, working it out in her head. Terror, then moments of overcoming, over and over in a cycle. She agreed to it as long as she got to tell them when. Luckily, she was the only patient that day, and Violet milked that open-ended time as much as she could, prolonging the inevitable until we almost broke, and then finally saying, “OK! Now!” and holding her arm so they could slowly slide that long catheter into her vein.

I’m crying just thinking about it. That kind of courage, against the deep-seated fear in her, was breathtaking to experience.

The clear results were an afterthought.

OK, that’s an exaggeration, but when the oncology team sat us down to give us the good news, Violet’s reaction was, “It’s not that big of a deal.”

Because to Violet, there just wasn’t ever going to be a different result.

Violet is the most stubborn human being alive, and that is likely an exaggeration NOT at all. She is a giant pain in the ass, to her sister, her friends, her parents. It is her way or the highway, and although we continue to work on this (and, in all fairness, she has a heart bigger than anyone else I know, as well, when she lets it shine), it has been her saving grace, literally. That determination is what has kept her alive and will allow her to thrive on this planet.

Going through treatment with her was an exercise of inconceivable patience. Giving her meds, coaxing her to get needles, dealing with her moods – it was a moment-to-moment grind. It reminded me of when she was a baby and refused to sleep. I would lay beside her bed after trying the cry it out method over and over, holding my hand on her back until she decided, hours later, to close her eyes, begging the universe for it to get easier. For her to succumb to the normal rhythm of life so her mother could sleep. But that’s just not her style.

It's not her father’s style, either.

She does things her own way. It makes parenting a nightmare at times (and marriage, but that’s another blog post), but it serves her. It was its advantages. And it teaches me the lesson, over and over, that we create our own reality. We make our own rules in life. And as much as I’d like to think I have a lot of control over my daughter’s existence, I don’t. I welcomed her in, and I’ve held her hand, but she does things the way she is going to do them. Even cancer. Even that.

So here we are, a year post-treatment, disease-free. Not that big of a deal. Maybe that’s her secret. Maybe things are only as big of a deal as you interpret them to be. She’s the one that had cancer. If it’s “not a big deal” to her, who am I to tell her otherwise?

But I can still celebrate like her life depends on it.