Trial take 2!

 For those of you who follow me on Facebook, you’ll likely have seen that I successfully completed my second half marathon in October, with a personal best time. Had you asked me back at the end of 2020 if I thought I’d ever run another half, I would have said absolutely not. At that time, not only had running become difficult and painful, but I was also just hoping that I would outlive the pandemic; that I would be able to do the traveling with my kids and make those memories that we established as goals when I received the inoperable diagnosis at the beginning of 2020. 

Tonight, as I sit and write this, I’m struck with how blessed I am to still be here, to be as strong and “healthy” as I am, and that I have the treatment opportunities that I do. 

While the last trial was determined to have failed in November, I have been given the opportunity to start in a new phase 1 trial (phase 1 meaning first time in human use). In the meantime… as our family tends to do when my treatments aren’t going well… we booked a trip!!  My doctor even worked around our trip and we were able to travel to Jamaica with some dear old friends and their kids; three families of 4 in Montego Bay. Great fun. 

Tomorrow I will start the new clinical trial. While it is very cutting edge, again using your immune system (T cells) to fight the tumours… it comes with some anticipated side effects that are quite scary. I have been told to expect fever, rigours (violent shivering) and drastic drops in blood pressure requiring significant medical intervention (one patient has been admitted to ICU). This trial has only been in action since January of this year and I will be receiving the highest dose given to date (the 4th cohort). I have been told that I WILL react, the question is just how severely. I will be inpatient for a minimum of 48hours to ensure they can treat these side effects and monitor closely. I report to Princess Margaret Hospital tomorrow morning at 9am. 

I have certainly been quite tense leading up to this. I was trying to ensure I was mostly ready for Christmas before our trip which was Dec 3-10th, knowing that I’d only have a week in between our trip and treatment week. This coming week I will need to be at PMH every day up to and including December 23rd; hopefully as an outpatient by Thursday. 

I have had lots of cause to reflect, not only about my mortality and the natural thoughts at this time of year of “will this be my last Christmas?” but also thinking about my blessings. 

While on our way to Jamaica, we witnessed one of the most traumatic events I can imagine. We watched a 4 month old baby die in his mother’s arms in the seats behind us on the plane. We listened to his parents anguished cries for help and watched the first responders on board desperately trying to resuscitate with inadequate equipment and supplies. We watched them rush a grey lifeless infant off the plane and I watched my children’s faces silently asking “how is this happening?!”

We spent the first hours and days of our trip trying to reconcile how we were there, in paradise, enjoying this time with our children, while that family was in agony living through an inexplicable horror. It felt wrong to celebrate and post pictures of our holiday. So for those of you who wondered why Ian’s normal Facebook anthology was missing… that’s why. 

As I prepare for tomorrow and for Christmas I am grappling with all of these emotions; grief, shock, fear, gratitude for my healthy children, gratitude for the time I have, love for my family, appreciation for my sense of physical wellbeing and fear of that ending. While I’ve been told that the reactions lessen with each infusion. I’m scheduled to receive this treatment every 2 weeks. 

I’ll be sure to update soon with how the week went… but in the meantime, give your babies some extra love, try to appreciate even the stressful times for what they are, and in the words of a fellow stage 4 cancer patient “make every moment count” #MEMC