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The longest waiting game – EVER

10:30am. April 30th 2014. Sitting up in my bed. I just took Prochlorperazine (nausea medicine) along with a bunch of natural remedies (Thanks to Lisa, Grayson, Michael, Anton, Chris, Maheen, Vishal and Erin for their thoughtful care packages). I’m giving myself a little bit of a break before I take my other meds. 

NauseaNaturalRemedy

How I’m feeling: I’m going through waves of nausea. I’m just trying to focus on breathing to get through it. My stomach feels like it’s in knots. 

On Friday March 14th, I had that painful and bloody biopsy done. A biopsy is a sample of tissue or cells that is taken from the body for the purpose of examining it more closely and are recommended when an initial test suggests that something isn’t normal. For my case, it was my series of scans and x-rays at Toronto Centre for Medical Imaging and at Toronto General Emergency.

What we wanted to know was whether or not whatever this was was cancerous or not. It was the first thing the docs wanted to rule out before moving forward with anything.

Every morning and every night, the doctors would conduct their rounds. A radiologist (We’ll call her Dr. C) and a few of her team members came in and provided us with preliminary results from the biopsy. I’m not sure exactly who was in my room at the time but I know that my sister My sister and Lawrence (bro-in-law) were there. My mom and brother may have been there as well. It was all a blur. I just know that I was in good loving company. In fact, I always was. There was not one moment where I was alone throughout my entire stay at the hospital – outside of when I requested some alone and quiet time.

Dr. C told us that it didn’t look like it was lymphoma (Woo! Good news) but that either way, the 10 X 10cm mass (that’s about the size of an orange) had to go. We had asked how and she proceeded to tell us that it cannot be done surgically because of how dangerously close it is to my heart, lungs and airway. I said “Ok, then how would it be removed?” She said “Chemotherapy”

My heart just dropped. Hard.

C-H-E-M-O-T-H-E-R-A-P-Y? Was I about to be in the hospital for a while? I was already sick of being there. I just wanted to get the hell out. I was supposed to get my biopsy done, get the results that indicated that whatever this was wasn’t cancer, be prescribed some meds and then be on my way out.

I’d get to go home; get some rest; sweat it out with my dance crew; eat good food; spend some quality time with my laptop, my team and cause some serious waves in health communications and tech; continue shaping future business and technology leaders; help companies and people design better, smarter and more sustainable futures; continue on with my healing quest; move forward with spoiling myself silly with happy – and continue on with bigger and better things.

And what I was hearing from the doctor was that I was about to forego chemotherapy? I was hearing what would put the above on pause. While I did not know much about chemotherapy at the time, what I did know was that it’s a treatment that is spread over a period of time, that $#%! can get dark and rough and that it comes with a slew of side effects including hair loss, loss of appetite and nausea. Chemotherapy was always linked to cancer in my mind. I had no idea that it was also used to treat even non-cancerous cell-growth. Interesting, eh?

I was upset and I mentally checked out. In fact, I don’t remember anything else the doctor said after “chemotherapy”

As soon as the doctor stepped out of my room – my eye ducts filled up with tears. I looked at my sister and I could tell that my she was trying to hold it together to stay strong for me – but I could tell that the news had saddened her.

For the rest of the night, I didn’t say much. I don’t think anyone did. I don’t think anyone really knew what to say. I think I just wept and closed my eyes for the entire night. I didn’t sleep at all. I just saw the insides of my eyelids all night. Black.

The next morning (Saturday), I kept on trying to remind myself that the news I received were just preliminary results. My family members kept on reminding me that that was the case as well. And well, at least things appeared like it wasn’t cancerous. A huge “Hooray!”

Saturday, Sunday and Monday were terrible. My breathing had gotten worse, I could feel my airway getting smaller, my chest was sore from my biopsy, my muscles were sore from not being able to breathe and I was up gasping for air whenever I tried to lay back to rest. I was tired and restless.

The nurse and doctor requested that I be moved a few doors down to a ward room so that I could be more closely monitored throughout the night. The ward was one big room with 4 beds all separated by curtains. At the front of the room was it’s own reception area with the ward room’s dedicated nurse. I was really bummed to have been moved, as I liked my spacious room. Also, I had already received a tonne of gifts, cards and flowers only within the couple of days I was admitted and my family members had done a great job at bringing me stuff from home and buying the essentials that I would need for an overnight stay for god only knows how long. That said, we had a lot of stuff to move on over. I was stressed out because I knew that a lot had to be done – and I couldn’t help out much.

Moving happened on Saturday or Sunday – I can’t quite remember. Cathy and my mom moved all of my stuff over to the ward room – and I tried to help out as much as I could but mostly tried to remain calm and not stress out at the fact that I just physically and mentally couldn’t.

Throughout the move, I made a point to say hello with my soon to be ex-room buddy. While this would have been our first time chatting, I knew that things were not well with her and she had expressed that she had a feeling that things weren’t doing so well with me either. She was up all night from coughing and discomfort and had a lot of attention from the nurses – just like I did. She was an older caucasian woman and while I had a constant flow of visitors, she had one. I felt a little sad for her – but I was so so happy when her one visitor spent time with her. I told her that I was moving down a few doors because of my condition and I learned that she was waiting for a liver implant. We both shared some words of encouragement, I shed some tears, we wished one another well and then said our farewells. It was a brief but touching moment.


8:50pm. May 1st 2014. I had to take a break from yesterday to finish this post. It’s a lot to recall and acknowledge. 

How I’m feeling: Better. Happier. Clearer. I just got back from a walk.

(Continued) My night was terrible. I still had difficulty breathing and while there was always a nurse present, the room was located right by the nurses reception area. Throughout the night, they were really loud and chatty. That combined with trying to find a sleeping position that would allow me to breathe while not triggering my chronic neck and back pain – was unbearable. I lasted in the ward room for only two or three nights before we requested to be moved back to a semi-private room. Thinking back, I actually received more attentive care from my nurse in my semi-private room.

While I did not get the same room I had before back, I was just happy to have been back in a semi-private room. Plus, I was able to have the company of my flowers again :). In the ward room, I had to leave my parade of flower bouquets out at the nurses reception area. My good friend Wayne helped my sister and my mom move my belongings over and set up my room for the 3rd time.

My breathing was getting much worse. I could feel my throat closing up. I was getting less than an hour of sleep each night and so I was feeling a little bit like a zombie. I was also swelling up like crazy. E.V.E.R.Y.WH.E.R.E. My face, my neck, my chest, my back, my arms – everywhere. Also, my muscles were aching as the only “sleeping” position that allowed me to breathe was this one – which flared up my muscle pains in my traps and back:

HospitalCV1

Look how poofy I was! I had gained so much weight. At the time, we weren’t sure why I was swelling up so much. The nurses and doctors at one point suspected that it could have been the position I was sleeping in or medication I was given – which had steroids in it. Later on we found out what was causing it. More on that in another post post. All I know was that every single time I slightly tilted my head back or to the sides, my airway would close. And that was pretty scary.

Throughout all of this, my friends, family members and I had been anxiously waiting to hear about final results from the chest biopsy. Every single time the radiologist and thoracic doctor would come around to do their a.m. and p.m. rounds, it was the only thing we asked for an update about. It was the only thing that mattered. All we wanted to know was Cancer: Yes OR Cancer: No.

And before all of this, most of us considered that goddamn Apple spinning wheel/beach ball of death excruciating to wait for. Ha!

spinning-wheel-mac

The morning of Tuesday, March 19th started off just like another “normal” anxious morning throughout this waiting game. I’ve had to refer to my calendar over and over again while writing this post, because it’s still difficult to believe that it had only been 4 days. It felt like forever.

I could hear the echos of the medical teams walk around in the hallways and conduct their rounds with other patients. They came in to my room around 6:40am and just as they walked in, I looked up at them from my hunched over “sleeping” position. I was alone, in pain, was sleep deprived and was expecting to hear “We don’t have final results just yet” again.

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