Monday, December 22, 2014

Chemo Talk

And there you have it, the new normal of chemo. The first day after the first treatment, I was awake for about an hour throughout the day. It's not my favorite way of spending a day, and it has nothing to do with "quality of life," which is at least half the focus of my treatment, but as long as things get smaller, I'll keep getting chemo, and I'll get to say, "I fight!" although sleeping all day doesn't necessarily feel like fighting.



I've started writing birthday letters to the kids. Just a few paragraphs that would hopefully remind them of me and of my eternal, unconditional love. Remind them I'm there even if I'm not physically there. I want them to know they can turn to me at any age--not for advice, but for comfort. Not to help them create their paths, but to remind them their paths are up to them, and that I'll be proud no matter what.

I've written a few already. Today was a longer than usual letter to a 10-year-old boy. Between Facebook and the blog, I know he'll be able to construct a picture of me, even if he doesn't quite remember what I had meant to him. The girl, well, in a day or two I'll sit down to write her 8th birthday letter. She won't remember me by then--only the way we remember long-gone relatives. Remnants of unexplained emotions and random, barely remembered anecdotes. But really, what else can I ask for? Do I need her to know the real me? Do I know the real me?



Here's me, or at least one side of me: I grew up in Israel. There were wars, and my dad went to the wars. My sister and I took his army shoes off when he came back home. I remember their smell. When I was 16, I became a political lefty. I couldn't stand the moral degradation my people so easily succumbed to for empty promises of security by charlatans who knew better. I became an Atheist, mostly because the alternative stopped making sense. Religious people can say my views make no sense. That's OK, they can say that. I served in Golani, although it's unclear whom exactly I served. That's where I lost my faith in authority and in my country. That's where I realized no one cared, and that we were all operating out of self-interest, and the hell with the rest.

Then I left for London, where I met my wife, and after an hour of chatting with her, my world-view changed again. Here she was, the selfless one who cared. And if it were possible for her to give so much of herself to others (in fact, it came so naturally to her), then the world must have been filled with so many people who wanted to help others. She made the world a better place for me, and if you find a person that does that, you don't let go.

We moved to the US. We had two amazing Pit Bulls. Seven years later, we started making babies. The transition from Man to Dad has been the most profound experience of my life. By the way, I think life is amazing.



After a couple of good weeks, I'm back to sleeping all day. Still, this second round of chemo has been much better than the first, and at least now I kind of know what to expect. A sleep that comes and goes, an appetite that comes and goes, and strength--physical and mental--that comes and goes. And I'll take this new normal as far as it gets me, hoping for years, but knowing it's not up to me.



A couple of days ago, we asked the doctor what she thought about me going to my kids' schools. It's been very difficult for me to be so ignorant of their lives outside the house. The doctor said, "Go, but wear a mask." And I said no, I'll go without a mask, because sure, my kids don't need me with pneumonia in the hospital again, but they also don't need me wearing a mask in front of their friends. Let them determine for themselves how they want to deal with a sick dad--they don't need me and some stupid pink mask to set the tone for the rest of their school lives, their friends raising endless questions they may not be comfortable even thinking about.

So I went today to a Terrific Kids award ceremony at the school. I got to see my brave son read a short speech, and finally today, in December, I got to see his teacher. Next stop: my daughter's Hanukkah show in two weeks at the JCC preschool. I see the jokes and the memes on Facebook. I know these shows are a pain for some of you, but they're my reason for living.



Spent a day at the hospital again. I had trouble breathing, so I was told to come over for some IV fluids and tests. I'm sitting there in the chemo room and I look at the other people. Some of them may have had an easy life, and others may have had to struggle uphill their whole lives, but no matter what--nothing prepares you for this. I mean, mentally, sure, I was ready. I was ready to fight and I was ready to accept the possibility of defeat with dignity. Physically, though, nothing prepares you.

Nothing prepares you for the weight loss, for the hair loss, for the loss of appetite... Nothing prepares you for the identity crisis you feel when you look in the mirror. Nothing prepares you for the loss of self. You say you'll fight, you'll be a cancer warrior, but nothing prepares you for the inability to fight.



And now I'm at the good week of chemo again. I'm awake all day, I go downstairs to eat, and I've even gained some weight. It's easy to be optimistic on the good week--easy to accept this as the new normal. Easy to call myself a fighter. It's even easier to look in the mirror. Easier to think about the near future.

See, we have plans: London in the spring for a family wedding. We plan to go to The Dublin Castle pub, where we met, and take pictures with the kids. It was here, Kids, that your mother transformed a cynical misanthrope who hated everything and everyone in the name of misguided Individualism into a man who believed in humanity again. It was here, at this table, that your parents met and started to talk. This table, Kids, is where your own story begins.


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