Adrienne's journal of her adventures.

A Letter to Cassandra: Thank You For The Raw Joy.

Edmonton, Alberta, Canada

Dear Cassandra,

The timing is uncanny, right?

Here I am, in Edmonton, visiting you. I didn't expect that my visit would help me just as much, if not more, than it would help you. Perhaps I should have. As I sit here cozied up in my hotel room bed at 7:24 in the morning, I start to cry. 

Our friendship has always been a healing relationship.

When I hang out with you, I experience raw joy.

But first, let me back up.


At the beginning of September, you were listed as status 2 on the lung transplant list. Status 2 means it's time. It's time for new lungs. Things are pretty critical. The lungs will arrive when a match is found. 

You both fought and surrendered to this transition.

Towards the end of September, you were airlifted to Saskatoon in an emergency situation. Your lungs were not doing well. Your CO2 levels were dangerously high. You needed an extraordinary volume of oxygen simply to live. Your cystic fibrosis had caught up to you.

Within a week of being in Saskatoon, you were flown to Edmonton, as the care that could be provided here ensured that you would be well looked after should anything go awry.

Here you sat, in Edmonton, hoping that you would soon stabilize enough to go back home. However, status 2 meant they wanted you to stay. The transplant would occur at some point, here in Edmonton - Canada's best centre for transplant. They knew the lungs were coming. They didn't know when or how, but they wanted you here until your new lungs arrived.

As you waited for your new lungs, we made plans for me to come visit you at the start of December. We would hang out, go through old footage, talk of your impending transplant, and mostly just laugh a lot. It would be a chance to connect and help you pass the days as you waited.

So when I got the call the morning of November 23rd, I couldn't believe it. "Cassandra had her transplant last night. And she's okay." My sister called to tell me the news. I was driving along a snowy and icy back road. I slowed down, pulled over and found myself sobbing the raw sob. Fear, elation, relief? I'm not sure. I think it was a combo of all three.

That thing that you've been worried about your whole life? It just happened.

We decided to keep our plans. Less than two weeks after your transplant, I would come to Edmonton to visit you.

I arrived last night. I drove to the hospital amidst swirling snow and icy streets. I didn't know what to expect, but all I knew was that I was here.

Your mom, Holly, met me in the lobby and gave me the lowdown as we walked up to the cardiovascular intensive care unit. We arrived outside your room. Your mom showed me how to put on a gown and gloves and a mask. I walked in and there you were. Cassandra, with what seemed like a hundred tubes coming out of your body and many machines surrounding your bed. But you were yourself. Sure, you were weak...but you were alert, feisty and ready for a talk.

For an hour and a half, we talked. Your bottom lip was shaking when I first arrived, but by the time I left, your cheeks were rosy. A third of the way through our visit, you told me about how you came to consciousness while they were cutting a hole in your throat for a tracheotomy. You were not supposed to wake up during your tracheotomy. Unfortunately, CF patients seem to have a very high tolerance for anaesthesia. You told me how you couldn't move or indicate to anybody that you were actually awake during the procedure, because they had given you a drug that was intended to keep your body still during it. You told me how you felt intense panic as they cut open your throat, but you couldn't do anything. You told me how afterwards, as the paralyzing drug wore off, you used every ounce of motor coordination possible to simply gesture to your mom and dad.

You just wanted them to hold your hand. 

You just wanted them to hold your hand. 

Last night, as you told me the tracheotomy story, I asked if I could hold your hand. You said, "Yes, of course." So I held your hand.

I think I needed to hold your hand more than you needed to hold mine.

We continued to talk. We talked about all the terrible yet necessary things that are involved with a double lung transplant. We talked about the incredible health care professionals that make the transplant centre world class. We talked about how Dillon, your fiancé, is flying to Edmonton from Tennessee this coming Thursday (yay!). 

Then I left the hospital, picked up a few groceries, and checked into my hotel. As I got ready for bed, I refused to think too much about you and the critical nature of what it is that you're going through. It felt too raw.

But as I woke up this morning, I This joy now brings tears to my eyes, as I sit cozied up in my hotel bed.

This joy isn't the joy one normally thinks of when they think of joy.

This is the raw joy.

This is the joy of seeing someone in the midst of transformative healing. This is the joy of holding a friend's hand as the panic rises (in me) when she recounts a terrifying experience. This is the joy of being reminded that I have a body that enables me to move about when and how I choose.

This is the raw joy.

I am here for three more days. In fact, it is time for me to get up out of my hotel bed and get ready, so that I can head back to the hospital to visit. You are expecting me. We have so much more to talk about. We have so much more to laugh about. We have so much more to cry about. 

Throughout these next three days? I hope I get to hold your hand every single day.

Cass, thank you for being my friend. Thank you for giving me the gift of raw joy.


In the cardiovascular intensive care unit, holding hands. 

In the cardiovascular intensive care unit, holding hands. 

Adrienne Perrot