8:45pm. Tuesday, February 3 2015
How I’m feeling: Distracted. There is so much going on – that I’m not able to focus on any one of them.
So, I’m going to get straight to it. For some context leading up to this, read my previous post. After I published that post on Monday, my plan was to step away from everything and literally sit on my bed with no distractions to think things through. Maybe even meditate and take a nap. I thought it may help me get a better read on my body. Well, I didn’t even get there. My shortness of breath (when I would have it) and just the thought of the fact that I was experiencing this was so distracting – or perhaps I should say alarming. As in, my body and mind was sounding off alarms telling me to act on it – while everything else was distracting.
I decided to get on the phone and start calling around Princess Margaret to try to speak to someone about my breathing problems. After leaving multiple messages and being passed around from one person to another – I finally got a hold of a nurse. She took notes as I described in detail to her how I was feeling. She told me that she was going to try to get a hold of my radiation oncologist but that if I didn’t hear from him in 15 minutes (it was 4:45pm – his office closes at 5:00pm), that I should go to the closest ER. It was the shortness of breath that concerned her. I immediately texted a couple of people to let them know.
I anxiously glanced at my phone every couple of minutes, hoping that it would ring. The thought of having to go to Toronto General Hospital ER made me really nervous. When the clock approached 5:00pm – I literally screamed out “F%$#!”. I took a deep breath and decided to make the call. There have been a couple of times over the past year when I’ve checked in to TGH ER and didn’t get discharged from the hospital until up to 2 weeks later. And so, naturally – I had no idea what to bring with me. I didn’t know what to expect – which has been the name of the game with all of this. I threw a bunch of random things in to my American Apparel duffel bag, contemplated packing Leia (my dog child), instead gave her a big goodbye kiss on the forehead, told her that I didn’t know when I’d be back but that she’d be ok – and off to TGH ER I went.
I arrived to a busy waiting room. People clutching on to their stomachs, patients whom were clearly intoxicated and once again in comes me who seemingly looks fine. I signed in and waited for my name to be called. I sat down with my mother (who accompanied me all night. Supermom, I tell ya!) and got to responding to some text messages with no real answers as of yet as to what was going on. After a couple of hours, my name was called. I was asked to describe what brought me to TGH ER and after I described to them what I was experiencing and that I was a cancer patient, they immediately took my blood pressure, drew some blood and had to get in to a gown so that they could stick 10 ECG stickies all over my chest to monitor my heart. Afterwards, I was sent back out in to the waiting room as they ran my data and samples through tests. A couple of hours later, I was called in for a chest X-ray and then sent back out – for a couple of more hours. I was called in and brought in to a private room with a bed. At this point, I was so exhausted and so I was happy to see something soft I could rest my head on.
We waited in the room for about a half an hour until a doctor came in with some results from my ECG test. My heart rate was at 115, which is abnormally high. He asked me to describe to him in detail how I was feeling, starting from the top. I told him about a cough I had since the Christmas break – and how it’s evolved in to what it is. I also gave him the dates of my chemotherapy cycles, my stem cell transplant, my high dose chemo and my radiation schedule. He told me that it sounded like blood clots. Something that cancer patients are at a higher risk of developing. The first thing he wanted to do was to eliminate the possibility of it being that by getting me to do a CT scan. I started asking questions about it, including how serious it could be (Answer: It can be fatal. About a 15% mortality rate) and how it would be treated (Answer: blood thinners). He left the room and I waited to be called for the CT scan.
“Blood clots? Are you kidding me?” – I thought. I tried to erase the 15% mortality rate part out of my head and focused on hoping that the CT scan results would show no blood clots. About an hour later, a medical imaging technician came to get me to walk me on over to the CT scan room. As per always, I gave the warming about my difficult veins. He tried 2 times and was unsuccessful at finding a vein that was good enough to hold the IV for the contrast dye. Another technician (this time, someone who works at PMH – and so is used to “chemo-veins”) gave it 2 tries before saying that he wasn’t comfortable proceeding. They called in “the big guns” and after two tries, she couldn’t get it done either. I was asked to return to my room – while they track down an even more senior pro. She arrived, and got it done in one shot – thank goodness! The CT scan went smoothly.
My mother and I fell asleep in our room waiting for the results. A couple of hours later, the doctor arrived with some news. “Sorry that took so long. The technicians have to look analyze the image line by line but the good news is that the scans do not show blood clots.” Big exhale on my end – and I’m sure my mother’s. “However, the scan did show some fluffiness around your lung – which is highly likely from radiation pneumonitis. Lung damage that causes inflammation from the radiation therapy. That said, I can send you home and you’ll need to talk to your radiation oncologist about how to move forward. If the shortness of breath becomes worse before you devise a plan with him, come back to ER” It was 2:30am at this point and I was SO happy to hear that I was being released. All night, I kept on hoping that I wouldn’t have to be admitted. My mother drove me home, I gave poor Leia a quick walk (that left me breathless afterwards) and went straight to bed.
So, here I am. Radiation Pneumonitis. I spent a good 30 minutes this morning researching it a bit – and then stopped myself after I got the gist of it because I know Googling these types of things can really screw with you. I’ve learned that it’s a long term side effect from radiation. How long term? I have no clue. Permanent? I’m not sure. I’ve been frustrated with myself because I went from being able to really control my breath well even through the confinements of my radiation therapy session – to the point where the technicians suggested I get in to diving – to having a tough time breathing after taking Leia for a walk or walking up a short flight of stairs?! I was told that things may get worse before getting better – but things have really changed. Over the past couple of weeks, I went for 3 runs. Sweaty, exhilerating, breath panting, RUNS. And now (since Friday, January 30th), I can’t even walk without having my breaths get shallower and shallower, my chest hurting, a headache forming and having to take a moment to catch my breath only after a few minutes?
On Thursday, I have an appointment with my radiation oncologist to discuss my situation – and hopefully devise a treatment plan for this. It’s really impacting my every day quality of life. I really want to know how long term is “long term”? All I know is that the moment I can breathe normally, I’m getting my scuba diving license. Being able to breathe properly, do not take it for granted. Do not take life for granted. I have to keep reminding myself that I’d rather live with a long-term (hopefully temporary) condition than to not be alive. A shift in perspective.
I’m really glad that I made the call to keep on top of my cough and breathing issues. I could have easily ignored it and passed it off for nothing to be concerned about – at least at the hospital attention level. One of the many things I’ve learned over the year is to be much more in tune with my intuition and to trust it. I’ve learned to know when it’s trying to get my attention and tell me something. I think for the most part, we’ve lost the ability to do this. It’s so easy to fall out of touch with ourselves. I believe that trusting your intuition starts with understanding what the voice of it sounds like – and everyone’s is different. There are often so many voices going off in all sorts of directions that it is sometimes difficult to distinguish which one is yours and what it’s trying to tell you.