Catching My Breath

Dearest support superheroes,

I finally feel good again today. Not perfect, but good enough.

Part of it has to do with breath. What has helped me through nurses digging around in my veins for an IV, among other unpleasant things, is breathing and visualisation. Lately, I remember old trips taken to remote countries. I breathe and I am somewhere else again.

My aunt in Australia has also been teaching yoga via Zoom to my family and I, and coordinating breath and movement has been a healthy challenge for me. “Yoking” the body through the breath seems elusive, but with each calm movement, you can gradually feel its magic.

Another thing to busy my mind when it has the capacity is listening to audiobooks or reading. A friend of my father’s recommended a book called “Breath” by James Nestor, which is an entertaining story that also has practical advice on how to breathe (and yes, there is a wrong way to do it). Despite all of this focus on breath, I still feel like I can barely keep up. I’ve finally recuperated.

My radio silence is an indicator of how incapacitated I have felt, but now I’ll share a little about how the last few weeks have been. It is hard for me to be vulnerable, but I think opening up and being authentic about how I describe this challenge will help people understand a little more about just how much illness can impact your life. And we all face challenges that affect our ability to move through the world and contribute to our families and communities.

Once I was home from the first hospital stay, I had a bit of time to rest after the brutal “induction” round of chemo. The bone marrow biopsy that was done the day I left the hospital revealed that the first round of chemo brought the blast cells from a whopping 79% down to 5% or less, which indicates remission! Wonderful news! Now, if I was considered to be in remission, you ask, why on earth do I need to go through another round of chemo and a stem cell transplant?! It’s because AML is an aggressive leukemia, and my blast cells have what is called a FLT3 mutation. This particular leukemia is likely to come back and kill me if I don’t get the stem cell transplant. I was prepared from the beginning for this process to take about a year, so I had no expectation to be better already.

On the bright side (my favourite phrase these days, even if said tongue-in-cheek), there is a medication that specifically targets the FLT3 mutation, called midostaurin, which reduces the risk of death by 23%, among other benefits. It’s a pill, and two are to be taken twice a day for 14 days, after the first chemo drug (cytarabine), for each round of chemo required. My second round of chemo, called “consolidation” chemo, was administered the last three days of March on an outpatient basis. They had to increase the dose of cytarabine to fit it into three days instead of the usual six, because the clinic was closed for Good Friday. They reassured me that studies showed the higher dose would be just fine (don’t worry, it was, but I had my concerns).

The first time I took midostaurin, I was in the hospital, which pays for all the drugs you need during your stay. This time around, I’d have to pay for it and mail in the receipt and paperwork to get reimbursed by my insurance company. I’m familiar with this process. I know it sucks, but I also know that this is just the way it is. I’ve been using my health insurance for years (it’s one of several reasons I’m wildly grateful for my job). I’ve already had to pay up front for an injection required for my treatment (which cost as much as an all-inclusive trip to Cuba), and it didn’t faze me. But now that the pharmacist at Sunnybrook was dealing with midostaurin (which costs about ten trips to Cuba), she was horrified on my behalf by this whole ordeal. I had showed up to pay for my post-cytarabine meds, but she insisted that I first talk it over with my insurance company to see if direct billing could be arranged. Many minutes later, I confirmed for her that they said it wasn’t possible. She then called the drug reimbursement specialist, who called the insurance company, and here is where some terrible and bizarre breakdown of communication ensues.

The broken telephone conveyed that the drug wasn’t even covered by my insurance; I needed to reach out to my employer for a form that didn’t even exist; after it was determined the form didn’t exist, I was told that someone in HR had to make an emergency request of my insurance company for the drug to be covered. After begrudgingly pestering my HR person too many times, he confirmed that none of this was true. I was very frustrated that week, and for the first time since being sick, felt supremely indignant. I paid the pharmacy, the paperwork was mailed last week and apparently arrived at the insurance company by Friday. I should be reimbursed sometime this week. Now I know that on the insurance company website midostaurin is listed as covered, but on the mobile app, which is what I usually use, it just says to call the company for more information. A pharmacist from my unit had done that previously for me, while I was still in the hospital, and not had a problem finding out that I was covered, so you can imagine how extremely confused I was when the drug reimbursement specialist was told otherwise. Anyway, I’ve heard other cancer patients have all kinds of nonsense like this (and probably much worse) to juggle while sick. Rant over.

After any round of chemo, you expect to have some side effects. Typically, the first round is the tough one, and subsequent ones, in theory, shouldn’t be so bad. At the very least, you can expect to have a fever, which means getting admitted to the hospital again. This is because your immune system is shot, and whatever infection found its way to you needs to be treated with antibiotics immediately. Sometimes it’s just the bacteria we have inside us that are acting out, so no matter how good your hand hygiene is, you can still get an infection. My fever came in the middle of the night, so I found myself in emerg at 2am last Monday morning.

I stayed overnight in emerg on a stretcher, waiting for a bed in my unit and having various blood tests and a Covid test done. I shared a bay separated by curtains with a large older man. The personal support worker with him was so decent, it was heartwarming – he responded to everything with kindness and without judgement, which I think is the height of professionalism for medical staff. I’ll spare you the details, but I can admit that this man didn’t make for a pleasant roommate, and the PSW handled it all with ease and charm. Three cheers for the front-line healthcare workers during this pandemic!

My stay in the hospital was thankfully over by Friday afternoon, and spring has sprung! I’ve since had the energy for two good walks and a bunch of personal tasks that needed doing. So far, this round of chemo has been far less intense than the first (more like a bad flu than anything else), and the side effects for the most part have now resolved. Fatigue and nausea lurk around every corner, so I never really know what to expect from my body from hour to hour, but I have meds, coffee, and as many naps as I want to get me by. I’ve also taken up the hunt for the perfect cinnamon bun in Toronto, and was wickedly disappointed twice in a row, so I may just give up and make them. If you have a recipe, feel free to send it my way.

This week is busy, with appointments every day. I have to end this post by thanking my fiance Oliver for tirelessly ensuring I get to each one. Even quiet weeks demand two trips to the hospital, and these appointments can take up to three hours if I need blood or platelets. He’s been a champ through all of it, and has managed to build his work schedule around this (thank goodness for his company’s accommodations). Three cheers for Oliver!