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Breathing difficulties post-radiation therapy

12:30pm. Monday, February 2nd 2015. 

How I’m feeling: Uncomfortable. I’m having trouble taking deep breaths, my muscles are really achey (maybe from the tension from not breathing properly). The deeper I inhale, the more painful and uncomfortable it is. I’m having a tough time concentrating on anything else right now. 

Tuesday, January 13th was my last radiation treatment – YAYRR! At that point, all I had was a cough. I asked the technicians if I should be expecting any more side effects and the answer was what I had expected: that it’s different for everyone and for every specific case. They did however tell me that they heard that I have a high pain tolerance (and to be aware of this) – and that if anything, side effects will get worse before getting better and because of where I was radiated, it is going to affect my esophagus, chest and throat. A few days later, I started feeling pain in my chest. It kind of felt like muscle pains – but much deeper. I had a hunch that it was from radiation – and that it was “normal” to feel this way.

Fast forward 2 weeks later, the week of Monday, January 26th (last week). Cough and chest pain is still there. Monday night dance rehearsal was very rough mentally, emotionally and physically. While I’m still quick to pick up on choreography, I become very frustrated when I realized that some of the movements now felt foreign to me. It frustrated me that I did not have the confidence, energy and I used to have with dance – since the last time I did this (a year ago). I just couldn’t get myself there – and it upset me. My mind was so distracted with thoughts including “How do I keep my wig on?”, “F%$#, this used to be way easier”, etc. – that it compromised my performance.My frustration last week led me towards practicing a bunch at home and in a friend’s studio. I just wasn’t present last week in rehearsal. And that hurts because dance is what used to be able to keep me present. It used to be my meditation. I realize that I’m being hard on myself. This is really tough. All of this re-adjusting. And this is not the same as being away from an activity for a long period of time (I’ve been there too). It is much more complex than that.

I’m feeling a little lost in life right now – including with dance. And I think last Monday’s dance session made me realize this. Outside of the 2014’s happenings and right now, I have always known what I wanted and gunned for it until I got it. And so this is a feeling that is foreign to me. I have been told many times from survivors and professional therapists that THIS is the most difficult part. The after part. After diagnosis and after being in the thick of treatment. I never understood why – until now. I’m getting it. One of the many reasons is that after a long period of time being thrown new information, procedures and treatments – things are slowing down for the first time. Last year was a blur (and so I am now so thankful that I have documented much of it via this blog) as I had to act very quickly with my condition. The problem here is that I wasn’t really understanding and processing – I was just making decisions. Now that I do not have daily appointments or am in the thick of recovering from my last treatment – everything that has happened is really flooding in.

All last week, I had difficulty sleeping and I wasn’t sure why. It’s just that every single morning I woke up, I felt exhausted and in a haze – and found myself passing out in to a nap midday a few times last week. It wasn’t until the afternoon of Friday January 30th where things started getting worse: my cough turned in to having difficulty taking deep breaths. A feeling that was similar to how I felt a year ago pre-diagnosis – but also not. It’s tough to explain. There are differences this time around. Including the fact that when I breathe, it feels like I’m inhaling and exhaling hot air. I guess this makes sense? I’ve essentially been burned inside from radiation. Also, the difficulty of breathing comes in waves. Sometimes I’m fine – and can carry on a conversation and sometimes I have to catch my breath. At one point on Saturday as I was hanging out with some friends, I started feeling a little hazy. I had to really concentrate on breathing properly and noticed that I started heating up and sweating. I then had to excuse myself to head home. Yesterday was ok and this morning, I felt it when I woke up after I walked down some stairs and near the end of my walk with my dog daughter, Leia.

I’ve been trying to determine if what I’m going through is “go to the hospital” uncomfortable – or if it falls within what one would expect to feel after my radiation treatment. Remember, I was told that things may get worse before they get better. So, is this it? The name of the game since diagnosis is “It’s different for everyone and with every treatment/case” and so, talking to others whom have gone through this or looking it up on the web is not the most helpful.

I have an appointment tomorrow afternoon to get my CT scan that will give us an idea of the results from radiation therapy. Fingers crossed for great news! And so, the decision I have to make is – wait until I’m in the hospital tomorrow and get my team to check me out OR head to Toronto General Emergency right now and wait around for hours to be attended to by someone who doesn’t specialize in radiation oncology. I’m so grateful that I have these choices – as many do not have these as options but it doesn’t mean that I’m any less lost as to what I should do.

I’m going to spend some real quality time with myself right now. Perhaps meditate to shut out any other noise/kick any potential baggage from past experiences or future “what if” scenarios out of the picture – and focus on how things are right now.

Wish me luck!

2 replies »

  1. Carolyn, I am praying that you get good news today at the hospital following your CT scan !! This would make me so happy to read. xo Hellen

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