8:03am. Friday August 8th 2014.
How I’m feeling: Tired. I didn’t get much sleep last night. I’m scared of what’s next. I’m waiting for my meds, this morning’s doctor rounds and crossing my fingers for some good news.
So, I’m still here at Toronto General. I was transferred early yesterday (Thursday) morning at 3:45am from Emergency to a proper semi-private room – and I received word around 6:00pm that I have to stay for at least another night. Hopefully, this morning’s update will include me being discharged!
So, here’s what went down yesterday. I had a constant flow of messages and visitors from friends and family. I couldn’t give anybody any answers, but it was a great chance for me to talk things through with loved ones. A nurse came in with the dreaded IV kit and attempted to get one in me. My veins are terrible – especially after all of the chemo treatment I have gone through – and so it took 6 painful tries. The one that’s in me now, is quite uncomfortable but it was the only one that managed to work. They are keeping it in me until I’m discharged and incase they need me to do more scans. Since my veins are so stubborn, nurses would hate to have to put me through another round of painful poking.
Shortly after I finished eating lunch with my good friend Wayne – who brought me a yummy salad to eat – and after he had left, my oncologist from PMH walked in. I was so thrilled to see Dr. K! He makes me so happy. He really is an incredible man. After he asked me a few questions about how I was feeling and right before he was about to give me the run down of how he sees the situation, my friend Stefanie walked in. And thank goodness she did. I felt like he was about to drop a bomb of information on me. The last time he did this was when he broke down my treatment plan to me shortly after I was diagnosed. I checked out and was only able to catch a few words. It was just too much information for me to process while I was in a state of shock. Luckily I had friends and family in the room that jotted down as many things they were able to process.
Based on what I have been experiencing over the past week with face, neck, chest and back swelling, the mass has grown – from the last chemo session on June 30th until now. There has been an increase in compression with my main vessel that is causing similar (but much much less severe) symptoms that I had experienced pre-diagnosis and pre-treatment. I can breathe, eat, drink, sleep – function this time around. But the fact that the swelling is pressing up against my airway is still worrisome. This means that at this point, the original plan of moving forward with radiation next is not going to be enough. I asked him “now what?” and he said that we are going to have to take an alternative route.
I knew surgery was off the table – as no surgeon will want to attempt to scrape this thing that’s dangerously close to my heart, lungs and airway out of me. I had no idea what I was in for. Dr. K said that I would have to do more chemo but a stronger and more aggressive dosage this time around (cue slow-mo heartbreak) and a bone marrow/stem cell transplant (cue panic)
I’m so over with chemo. I just re-watched my “I’m done chemo!” video – and I miss being that overjoyed and ecstatically happy about it. I rang that bell so damn hard last Wednesday. And it was a moment I was waiting for for a very long time:
Just as I was through with it, didn’t know how much more I could possibly take from chemo and was still very much so on a high from celebrating it with all of you last Wednesday, I’m told I likely will have to get an even meaner chemo treatment. I was already on my way towards prepping myself mentally for radiation.
Bone marrow transplant/stem cell transplant. Holy $#!$, this scared me. I asked a tonne of questions about this one. What I know of bone marrow transplants is that they are terrible and painful. I needed to know exactly HOW it’s done and if the way I may be getting it will be the same of what I was thinking of. Dr. K saw the fear in my eyes and re-assured me that it wasn’t exactly what I was thinking. It was a different kind of transplant. The version I’d get would be extracted from me via my blood, sorted and then transplanted back in me the same way it was extracted – via my blood. With this process, I will have to be admitted for 3 weeks during the treatment. I was admitted for 2 weeks back in March – and it felt like eternity. I still have more questions about this one. I still have more questions about everything. Hopefully when I ask them the next time around, I’ll be a little less in shock so that can process his answers properly and have more people in the room to help me out.
Radiation is still on the table. In fact, I would absolutely still have to go through radiation as well – after chemo and the transplant.
While this next phase would be dependent of a CT scan I was scheduled to get at 5:00pm, Dr. K said that he is quite confident of what the CT scan will show – and what next steps are going to be.
As soon as Dr. K left the room, my friend joined me on my bed, hugged me and cried with me. I had no tears with Dr. K, but as soon as he left – I broke down.
I am so grateful that Stefanie was there with me to try to absorb everything Dr. K was telling me and try to make sense of it with me. We started talking about what we both had gathered from Dr. K. If it weren’t for her, I wouldn’t have been able to write out this blog in detail and have been able to communicate it to my friends and family all day yesterday.
Soon after the news was dropped, my brother in law arrived and Stefanie helped explained what the situation was. Once Stefanie left, my mother arrived (after being gone for most of the day to run some errands for me) – and my friend Nitika. At this point, I was able to fill them both in.
At 5:00pm, a porter came to pick me up from my CT scan. While I’ve done these scans so many times, that one traumatizing experience I had back in March with the contrast fluid now makes me a little nervous whenever I have to do another one. Good news: it went smoothly. Just because where the IV is placed, it did sting a little more than usual – but all went well.
For the remainder of the evening, I spent time with Mom, my sister and my cousin and was eagerly waiting to hear from my assigned doctor that I’d be discharged. After asking the nurse a couple of times to page him to ask, at around 6pm I learned that I wasn’t going anywhere. They want to monitor me as I take these huge dosages of steroids to help reduce the compression against my main vessel – which is causing the swelling.
I have no idea how long I’m going to be here. But, I want out. And while I’ve been feeling waves of feeling defeat, I’m not about to NOT kick this $%#! out of this thing. There is no way I’m going to let this takeover.