11:00am. Sunday February 15th 2015.
How I’m feeling: Puffy, headachy, tired. Grateful.
It’s been 2 weeks since I was sent to Toronto General Hospital ER and things have been really difficult. While, I’m (as always) trying to just live – I’m struggling. Things are very uncomfortable.
So, what’s going on? Well, what we know is that it is not a blood clot in my chest (thank goodness). Cancer patients are more susceptible to developing blood clots and I wasn’t ok with the 15% to 20% mortality rate I was given had we’d found out if this was the case 2 weeks ago. A great big PHEW!
As of Thursday February 5th’s appointment with my radiation oncologist, my breathing problems are being treated as radiation pneumonitis – a form of long term lung damage from radiation therapy – based on what was detected from a bunch of scan results. I was prescribed steroids (Prednisone) of which I am well acquainted with because I was on them as part of my chemotherapy treatment for most of last year. I was off medication for the first time in a year over the past couple of months – other than the aggressive chemotherapy concoction that’s still flowing through me from last year and the radiation therapy that’s working it’s way through me – and so, I started to feel a little closer to being a “normal” person. I have to say that being back on these steroids are bumming me out because they make me feel so terrible. Go ahead and look at the list of side effects. My face and parts of my body have already started swelling up and I have had a non-stop headache. Of course with this medication, comes a couple of medications that I am instructed to take to help deal with the side effects – which are giving me another slew of side effects. Really, it doesn’t end.
After about a week of being back on Prednisone, really crazy stomach pains (that almost had me ready to call ER again) and trying to carefully monitor any changes with my breathing, I had a follow up appointment with my radiation oncologist on Thursday, February 12th. At this point, I could walk a little further without experiencing chest pains, coughing/choking and woke up less times throughout the night gasping for air. A good thing! While not a whole lot of improvement, some. It became less scary for me to go to sleep. The past couple of weeks I’ve experienced a couple of unfortunate reminiscent moments from last year when I was freshly diagnosed, things were hectic and when I was forgoing really aggressive and quick treatment – and being scared to sleep as each day turned in to night was one of them. After seeing my radiation oncologist on Thursday, he decided to lower my dosage of Prednisone a bit, which I was SO thrilled about. To me, it meant that things seemed like they are slowly getting better and that I would start to experience less of the craziness that comes along with the medication. A really great start to my day! However, the rest of my day was absolutely crazy. A normal person would have been left out of breath from it – so for me, it was a little too much to handle. Also, after walking in to my very concerned class of Humber College students (I had to cancel the previous week’s class because of me being sent in to ER), I learned that some of my students are aware of this battle I’m facing. I’m ok with this. In fact, if I was not ok with having those in my network (and strangers) knowing about it – this blog would not exist. Those of you who know me know that while I am a private person in some ways, I am also very transparent in others. I don’t have anything to hide especially if I know that others can learn from me and that I can continue to grow and excel by doing so. A handful of my students ended up hanging out after class to share with me how much they’ve learned not just from my class lectures and lessons – but also from tuning in to my very personal documented battle with cancer. These exact moments are those in which I am so incredibly grateful for. I was exhausted – but this gave me the jolt of energy I needed to make it through the rest of my evening.
The very next day, Friday February 13th I had an appointment with my main main, Dr. K – the head of the Lymphoma team at PMH. I was really looking forward to seeing him. The last time I had some form of communication with him was back in October 2014 when he was in Ethiopia on assignment and gave me instructions via email to go out and celebrate my birthday before I was about to be confined in PMH for 3 weeks for the big high dose chemo and stem cell transplant. Dr. K means so much to me and my family and friends. A handful of you have also experienced Dr. K’s awesomeness just from being in hospital rooms with me as he’s delivered some not so good news (like a pro) and discussed plans of action. This man has perfect bedside manner with me and my family and friends and I have felt completely confident in him handling my case since day one – ok, *end gushy rant*. The objective of Friday’s appointment was for him to see how things are going post high dose chemo, transplant and radiation therapy. But the conversation was definitely centred around what I have been dealing with over the past couple of weeks. He could not really give me too much insight in to the status of my mass because the reality is that there are these new developments. There’s some not so funny funny business going on around my lungs and mass that’s giving me difficulty breathing – something that isn’t to be taken lightly. Even though I wanted more than anything to just hear him say “You’re cancer free” – I’ve learned that this isn’t a realistic expectation to have at this point. After doing a walking test while being hooked up to an oxygen and heart rate machine, Dr. Krump walked in with the results from it and told me that he’s going to bump my Prednisone dosage back up based on what he saw with the test results. “Things aren’t there yet for me to feel comfortable to decrease your dosage” he said. Ugh. I felt a little defeated. I was already having trouble with these steroids and so being on a higher dosage for a longer period of time made me sad. It also meant that things aren’t moving along as quick or enough as the team would want it to – and this scares me.
Over the past couple of weeks, things have been really rough. Dance has been really difficult. Currently, I am participating in the most training I can take before crossing the “I’m not making the most wisest decision right now” threshold – of which I’m still trying to determine every day because it changes, every single day. I’ve had to take taxi cabs everywhere because walking more than about 25 steps without starting to feel uncomfortable has become an issue and likely isn’t the safest thing for me to do right now. Walking my dog is the toughest part of my day – even though Leia has learned to do her business very quickly and pretty much right in front of my home because she knows something is up. The cold air makes it much more difficult for me to breathe (and I was warned about about this from Dr. K) because it causes more compression in my airway, I start to feel like I’m choking and my breaths become shallow. Right now, I want nothing more than to go for the longest aimless city stroll. And YES, even in this -40 weather. Sure, it’s insanely cold out but you know what? If I could have my breath back I’d go for it – with no complaints at all.
Bundle up, go outside and take a few deep long breaths that I’m not capable of taking right now for me? Do not take your breath for granted.
Today I am thinking about my cousin’s husband whom we lost 2 weeks ago to Leukaemia. He was diagnosed a few years ago before Bernadette (my cousin) and he got married and was one of the most positive and uplifting person I have ever met. Even on his own wedding day when he was clearly not feeling well from his illness (his face was a shade of grey/green), he lit up the room with his energy. He made Bernadette so happy and so he was welcomed in to our family with open arms. The few times we got to hang out – I immediately warmed up to him. Alex has been on a roller coaster with the Leukaemia being in and out of remission over the years. About a month ago, he was admitted in the hospital to receive a hit of high dose chemo (what I received in October) in preparation for a bone marrow transplant. He didn’t even make it to the transplant part. The high dose chemo is really intense – I know this from experience. Your white blood cells are brought down to 0 which makes one dangerously (and and this case, severely) susceptible to infections with no defence to fight anything off. He was not able to recover from the side effects from the high dose chemo. It apparently took him very quickly. Just like that. One moment he was breathing. The next he was not. His few last words were “I’m going to be fine”.
This made me realize that I am one lucky lady. But I am so hurt, angry and saddened by all of this. This cancer took someone who was so uplifting and positive beyond anyone’s belief through their fight with cancer. It left me feeling sick to my stomach and helpless thinking “Great. How am I suppose to approach all of this now? I can’t help but be positive throughout all of this (it’s just my default way to go about things) – but does it matter?” It left me questioning my own method and how non-linear all of this is. It’s situations like this that make me feel helpless to cancer. I’m trying to turn this feeling of defeat in to more fight but am admittedly having a tough time doing so right now.
While I am so deeply saddened by all of this, I am happy that Bernie and Alex were able to bring life in to to world before Alex’s passing. Last year, they welcomed a beautiful baby boy in to the world, Baby Logan. I’m looking forward to further getting to know Alex through him.
I love you, Alex.