January 9, 2019

The last update I did – other than my Christmas song – was almost a month ago. And it was a good day. If I’m honest – there’s been some good and bad since then. I want to be honest, so here’s the good and the bad. To start – the increase in my chemo dosage really sucked. More tired, more nauseous – and I actually missed a couple of days at the rehab gym because of it – which does not help with my current goals.

I also got a phone call on December 21st from the genetics clinic. Because of my family history, and my current situation – they felt there was a 90% chance that I inherited Li-Fraumeni Syndrome, so I was tested. My mother has it, and it was passed on to my sister, and in turn passed on to one of my nieces. I always felt that I would be different. What this means is that I have a predisposition to a wide range of certain, often rare, cancers. This is because of a mutation in a tumour suppressor gene (TP53) – meaning that my body is lacking the ability to prevent malignant tumours from developing. I am highly susceptible to developing multiple cancers in my lifetime. I never really wanted to know what my chances were of getting cancer, but I figured that once I beat this brain cancer – I wanted to stay on top of anything else – so I got tested… and I failed. Knowing I have the gene doesn’t make it easier – it’s actually made it more difficult mentally. But, I start to get tested frequently for signs of other cancers, and the survival rate of early detection is remarkable. I already knew that this type of brain cancer meant a fight for the rest of my life – but now the fear of other cancers hanging over me… I like to live to live. I am not going to let this take away from my life. It might be tough to deal with mentally right now, but my life is NOT going to be about cancer and death!

I had a great Christmas, and there was a lot of family around. My father-in-law was there – that was especially moving. His cancer diagnosis came shortly before mine. They say mine is “incurable”, but his – there’s nothing more they can do. I watch him, and he watches me – and we both feel powerless to help each other – but the love, we can feel. We ask the same questions about life and death. Sometimes he’ll talk about his fears, and his hopes – and then he’ll just suddenly ask me how I’m doing. And he’ll hold my hand and help me to be strong, and not afraid. One of the greatest men I’ve ever known.

That may have sounded more bad than good – but that’s just the way it sounds if you don’t read between the lines. There is hope – and love – and strength. There are family and friends – dreams and desires.