Our lives are being lived in the new normal, whatever that means. It has been shocking to me to discover that a lot of the scary words (Chemotherapy, Treatment, Cancer) are a lot more mundane than you would think. I believe my own fears and my own expectations are way worse than the reality I've experienced in the last two weeks. For starters when I think of Chemotherapy I think of nurses and doctors entering a room in radiation suits holding the vials of chemotherapy in large tongues, having to clear the entire room to administer it. I was quite pleased to find out this was not the case at all. Sure, the nurses put on a protective gown just in case (if you ask really nicely, one might do the really funny loud clothing dance to make Sam laugh), but it is blue and doesn't have a radiation or bio-hazard mask to go with it. In fact, if the nurses didn't tell us it was time for Sam's treatment we would still be playing on the iPad together or watching a movie while they sauntered past us with innocuous looking syringes that they would plug in to Sam's apparati.
I have to admit so many of my expectations came from television, movies and my own father's experience over twenty four years ago. They aren't Sam's reality. They are my own fears in my head. Oh, sure this could just be two really bad weeks that weren't quite as bad as I thought they were. Or these could be Sam's normal for receiving this treatment.
My expectations for chemotherapy were huge amounts of nausea equalling flu like symptoms. I expected scenes from the Exorcist with Sam projectile vomiting while his head spun around spraying the room with pea soup (or chocolate milk, he really hates Pea soup). Our experience is he got sick once or twice a day a few hours after eating or after walking too much and threw up gently into a basin while we plied him with water to rinse his mouth and tissues to wipe his nose. It wasn't hourly, it wasn't overwhelming and in fact it was much less frightening then when he did have the flu a month ago and was just wretched and wretching for 24 hours. Thank God for small things and for the anti-nausea medicine REALLY doing its job.
Years ago my father was wiped out by chemotherapy and his treatments seemed to drain years from his barely fifty year old self. Sam is pissed, but realizing he is very loved and surrounded by all those who love him (or totems of love in the shape of various toys, books, games and electronic devices that have poured in from all of you). One family even sent a lifesize fascimile of themselves in the shape of a GIANT bear to show Sam how much they love him (I'm beginning to question their love of me since I truly have no idea where to put the bear just yet).
So I am adjusting my expectations for this new normal. Sam and I did our best this week to have a lovely time spending our days in the hospital together. The other day he earned time on the iPad by eating ten spoonfulls of vanilla yogurt. Afterwards, when he was feeling up to it he walked to the central patient's TV lounge where he played on the x-box for a bit and talked to his doctors while showing them his growing driving (crashing) skills. At lunch I was most proud when Sam asked for and devoured an entire strawberry yogurt (a day before the feast of 9 plums).
In truth we all know there is rarely a normal. There are the moments we face with ease and the moments of chaos we face using the best of our abilities and survive by the grace of God. Sam is doing great in my book. He is no longer screaming from leg pains I can barely fathom. He is walking, talking, laughing, making silly faces at family and friends on Facetime on the iPad, and enjoying his life as much as possible all things considered. In other words, he is making the best our of a bad situation, but not making it worse than it already is.
Sure Sammy is living in a hospital ninety minutes from me for an extended period of time. My wife, my brother or I are separated from each other as one of us keeps Sammy company on any given day. Our reality has been shifted dramaticaly to make room for this temporary reality. This time has given us all pause to truly look at what is important to us and what takes precedence in our lives. It has given us time to give thanks for how close our family is to each other emotionally and physcially. It has given us a chance to see how much our friends, family and communities love us and support us during this time.
Even when my five year old daughter asked me to go to bed when she went to bed last night and asked if she could sleep in our room I didn't hesitate in granting her small request. I simply put a pillow in between us as we both lay down to sleep hours before my normal bedtime (she tends to kick and my iPad lets me read in the dark).
There is no normal. There is only this moment. I love my son, Sammy, for all the strength he lends me to see he is handling this so far, just fine. I love my wife even as the events separate us. I love my brother for learning to be a parent of four in a year when it took me a decade to get close to being an advanced novice of a parent. I love my mother for always being there and thinking we are the best. I love David, Yael and Solomon for rolling with it and pretending not to be too scared. And I love all my family and friends for all of your kind words, texts, calls, FB messages, calls, hugs, gifts, meals, and tears. Together we can get through this all. Together we remind ourselves what it is all about in the end. Infinite Love and Gratitude.