A syndrome. Tonight I looked up the definition of "syndrome". It is a group or gathering of symptoms common to a disease. A group or gathering. Apparently, we are hosting a dinner party for some pretty screwed up DNA.
Brett has a syndrome called Lynch Syndrome. He has the rarest form of this syndrome called Muir-Torre. We've known this. In fact, if we had listened to his dermatologist almost seven years ago, we knew it then. But today it was put on paper. The genetic testing results were there in black and white with lots of red- red indicates risk of certain cancers. For lack of a better, more medical like, description, he lacks a repair mechanism. If his cells become abnormal, they keep replicating abnormally- cancer. The symptoms have gathered and we are all sitting at the syndrome making idle chit chat, waiting for what comes next.
I process by writing and there has been plenty to process lately. There's the confirmation. With the confirmation comes realization and that weighs heavily. When someone is diagnosed with cancer they read statistics and live for that magical five year mark and words like "cured". We won't have that. We will continue to live life six months at a time for as long as God allows. Every year we've looked forward to that year without trips to the cancer center, the year without the continual financial drain when we finally catch up again, the year without scans and blood work and tests, the year without cancer. It won't come. Who sent out these invitations to this gathering of symptoms? I am certain it was a mistake.
Then there's this crazy misplaced guilt. Brett has messed up DNA. We had children. What were we thinking? Did we just start their own cancer dinner party? Did we just bestow fear upon them? Did we change the course of their lives with this revelation in any way? We agonize over this as if we had a choice. And, given the choice would we have done anything else and missed out on two amazing gifts to the world? No way. We'd do it all again. Yes, Garth Brooks, I might have missed the dance and I wouldn't have missed this dance for anything.
So, now we get to decide what kind of dinner party this will be. Will it be the one where we all sit around bored, waiting for what comes next? It easily could be that dinner party everyone dreads attending. Will it be the dinner party of fear- like the ones in a horror movie? It could easily be the one where everyone waits in fear of who will be murdered when the lights go out. Seeing statistics on paper and realizing the high risk rates and recurrence rates certainly carries with it some measure of fear. Will it be the dinner party with the angry drunk uncle? You know the one, where he loses it and everyone cringes. This party certainly carries a measure of anger. I hate cancer. I despise cancer. I'm angry; not just for us, but for all those who are touched by it.
If you know us at all by now, it won't be any of these things. It will have moments of these things but the symptoms have gathered, the messed up DNA has been invited, and we will laugh and learn to live with them. Even if it isn't the guest list we would have liked- it is what we got and we will make the most of it.
Oh, before you think me saintly... I will definitely spit in the food before it is served...
Brett is currently cancer free. There is a chance he may be for many years to come. We will find a balance between being vigilant and realistic without being motivated or paralyzed by fear and dread. We will count the blessings. We know how to throw a party.
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