100 Days.

Though I feel like it’s been much longer since day zero, the calendar doesn’t lie. If it wasn’t a benchmark number, day 100 would likely come and go without much notice.

But here we are, so far so good.

Scott is doing very well. If you haven’t seen him lately, you still may not recognize him, but he’s feeling more and more like himself each day. Everyone agrees his silver hair is working for him.

He’s thinner than he’s been in a while, with an absence of muscle mass and a lack of appetite contributing to a leaner figure. Scott had an appointment with a personal trainer on Friday, and was set up with a program to get his body back feeling strong, and healthier than ever. He’s starting slow, with exercises he would have balked at a year ago, but he would be happy to show off his thigh master “clams” move if you’re interested. Even though he can barely walk today, following his session two days ago, he’s motivated to take action towards personal improvement, and is really just tired of feeling tired.

December 1, 2015 is a date that will haunt us for ever. It is the day our world was turned sideways. The day I stopped questioning what we did to deserve such a wonderful life, to wishing I had just kept my mouth shut and been grateful. Never have we wished so hard for a time machine. Scott has been in a positive mindset since treatment began, believing statistics are irrelevant – what’s happening to other people with Lukemia doesn’t affect him. He’s happy to be the exception, of an example of the best case scenario, and doesn’t want to be troubled with any details that may not fit that idea.

On the flip side I’m told all.the.time to live in the moment and be present. This lesson more than any other has been the most difficult to accept, and a challenge to remember each day, throughout the last eight months. At the hospital a couple weeks ago, while Scott had his weekly appointment, the kids and I walked around and filled his prescriptions at the cancer centre pharmacy while we waited for him to finish. An elderly gentleman while holding the door for me as I hustled the kids inside said, “don’t worry, you’ll get there”. I’ve started wearing an elastic band around my wrist, to literally ‘snap’ me out of a moment of anxiety or fear or a Google-torment-vortex. It doesn’t matter what is happening “out there” or what has happened to the “other” patients. Today, Scott is smiling, hopeful and stronger than yesterday. We can’t worry about what could happen tomorrow or on day 200 or day 2000. We are just grateful for him being with us and sharing each day as it comes, together. As his immunosuppressant ‘cyclosporine’ is decreased, we face the increased reality of Graft-Versus-Host Disease showing up. When he says his stomach hurts, or mentions dry skin do I immediately jump to a GVHD diagnosis? Totally. A girl can only be so present. But he isn’t showing symptoms today, which is all we can ask for. If that changes – and we have no control of that – we know he’s in good hands. And with each reduction in drug dosages, Scott feels a bit better so it takes the edge off the risk.

Next summer Scott will be back at work, healthy and life will be more “normal”. We won’t have a summer at home as a family again like this for a long time, so we are trying as best we can to live in the moment and enjoy it. Doctors appointments, activity restrictions, intense fatigue, SPF 100 and dorky bucket hats are minor details. Life is busy, days are often a blur and more often than not we find ourselves saying “wow, where did that week go?” I’m taking those words of a stranger to heart and just sloooowing down. We will get there. 

At day 100 we are so grateful. And feeling so blessed. The sick feeling of watching Scott as he underwent preparation chemo is replaced with gratitude for crossing this 100 day threshhold that felt so far that 107 days ago. And though without any effort, I can take myself back to the dark and frightening days we’ve endured, I am much happier to focus on the brightness and possibilities of what’s to come.
Happy 100 – and thanks to everyone for being in our corner.