A Shift

Photo by Tadej Skofic on Unsplash

Something’s different. The tides have shifted, and there is a different energy to things these past few days. The sun is shining, and with that delicious vitamin D has come a perspective I haven’t let myself have in a long time. A looking forward, perhaps, like peering over the edge of this mountain we’ve been climbing and catching a glimpse of the sunrise across an expansive landscape I had forgotten was there.

I maybe should have posted more updates these past few weeks. But part of me just couldn’t do it – couldn’t write any more about the atrocities of this place and put a positive spin on it. Not because I didn’t have that in me, or wasn’t doing it in real time (positivity has been a survival skill, and one that has now been trained deeply into my psyche). I didn’t want to write another “complaining cancer post”, draining the meaning of the words by repeating things I’ve said over and over.

This is awful. But we are making it through. This kid is an absolute warrior.

Timing is everything. And there will be many more “complaining cancer posts”, because that is the status of our lives – the defining feature that makes this blog even worth writing, these days. There is power in those posts, for me, and for the message that might resonate with those reading it. There’s nothing wrong with those posts. But timing wise, I’ve been needing to deliver different content.

So here we are.

It’s Saturday morning, and the sun is incredibly bright in Vancouver. Growing up in Alberta, sunshine wasn’t always something you noticed. When there was fresh frost, it glistened and called attention to the trees and rolling fields. Flat light irritated the eyes, and on those glaring days it hurt to hold your eyelids open when driving or going for a walk. But here, on the coast, it isn’t just the dramatic light that you notice. It’s any time that blue is visible that people pay attention. A sunny day is almost a holiday. The seawall fills with people. Strangers dare to make eye contact and smile. It is a city-wide celebration.

In other words, people just don’t take it for granted, because sunshine is scarce here this time of year. And for us, sunshine has been scarce for much longer than that.

And this energy of renewal – this safe space to look forward – is impossible to take for granted.

[OK, unavoidable “Complaining Cancer Post” context] - Violet is now on Day +23 of this transplant round. That’s 23 days post-stem cell infusion, and 30 days post-chemo admission. Tomorrow we will have been in this hospital for a month. Boy how time flies.

Violet has gone through the gambit, again, with side effects. We knew she would, and yet despite the horrors, relatively speaking she has been alright. God, relativity is a crazy thing when taken in some contexts. Relatively speaking, she has thrown up less stomach lining than last time. Relatively speaking, she has been on less opioids than last time to get her through the days. Relatively speaking, she has thrown less things at her mother in fits of frustration and rage.

But this was the big one – Stem Cell Transplant #2. From day one, realizing we were in for an 18-month haul in the hospital, followed by the rest of our lives trying to crawl out of the shadow of fear that this will all return, I’ve tried to settle into this as if she will always be sick and this is the format in which we need to live the best life possible. We may be stuck in a hospital until the end of time, but if that’s the case, we hunker down and make it good. Make it meaningful. Make it whatever we possibly can. Because maybe it’s all we have, or ever will have, again, together.

It was such an impossible thing to digest, and yet, nine months later, we are still doing it. Still making the best of it. Still treating it like “life”.

Ten minutes ago, the nurses came in in tandem to decrease Violet’s precedex – a sedative that had been infused constantly into Violet for weeks to decrease pain and minimize anxiety. Coupled with hydromorphone, these drugs have numbed enough agony to allow her to move, to smile, to sleep. But now it is almost discontinued completely, and save for sudden mood swings that come with the weaning process, she is handling it great. She is on the way up, which means we are on the way out. This final leg of chemo is almost complete – the round we feared the most from the beginning.

Outside is calling. She has been taken off isolation status as of Thursday, which has meant quick trips through the halls and a visit or two to the patio for actual fresh air. These are game changers, and has awoken a new desire in Violet to heal faster – to try eating and drinking and making Valentines cards.

It’s tough not to get too far ahead of yourself. One of the biggest life lessons I want to hold on to from this is to be as present as possible in every day. That’s where the satisfaction is, and the control, and the clarity. But it feels so good sometimes to cruise down the hill at top speed and let the wind rush across your face.

We are only halfway through this treatment. Nine months in of an expected 18. She still has radiation and several months of painful immunotherapy to contend with. Not to mention the fact that we are not yet out of the weeds from this. There are many months of travel, of appointments, of scans and scary things. There are many months still where I cannot work and will have to leave Lucy and Matt behind for more chunks of time, not able to put her to bed or sleep beside my husband. Violet will have to endure new challenges and conquer new fears. My parents will continue to live “on call” to help with anything I can’t handle by being here, managing this. We have many more battles to face.

But this is a turning point. In March, after Violet completes the radiation piece of this, we are going HOME. Violet will have her own room – personal space she has not had for nearly a year. We will be able to see our friends and snuggle our dog and sit beside the lake we love so much. Since May 31, when I was suddenly ripped from my living room couch, I have barely let myself even think about home. And here we are, weeks away from returning.

I’m scared, and excited, and impatient, and apprehensive. I have no idea how I will talk to people, with the agoraphobia that has developed from living in a box, and deep reserves of overwhelming gratitude and guilt that has come from being “taken care of” by so many. If I had previously developed emotional guards over the years that had kept me safe from too much intimacy with others, those guards have dissolved – I have made the most intimate emotions of my life part of the public domain.

We are not going “back”. We are arriving home after our “hero’s journey” – returning from the underworld to face our new reality.

We have been through some serious shit, to say the least. And there is more to come. And maybe this is denial, but it feels like we have been through the worst of it. I won’t hang my hat on it, but today I’ll let that thought lift me up and enhance the effects of this sunshine through the window.

It’s all we’ve ever got – our perspective in a moment. And in this moment, things are looking up. And onward.