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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46 comments:

  1. I don't know what to say or add other than Chag Sameach. Your approach is inspirational.

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  2. Terri Robinson LemereDecember 22, 2014 at 2:21 PM

    You are an amazing writer and have such a way putting things into perspective! Thank you so much for sharing your journey of your life :)

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  3. Thanks as always for sharing yourself, Oren. My best to you and Beth always. Thinking of you.
    -JCM

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  4. Thank you, Oren. You help us see what matters.

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  5. Oren, you continue to brighten my day even when I was in fact having a down day. Thank you for bringing into clarity the little things we need to focus on and and simply take time to appreciate the ones we love the most.

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  6. I'm glad to get these glimpses, and I hope y'all able to enjoy some more quality time together the next couple weeks as schools are out, and employees get time off.

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  7. איזה יופי אתה כותב. הקול שלך נשמע מהטקסט כמו vo לסרט בעל-משמעות בונה. עמוק ומרגש. הלך-רוח איתן. אבקש להזכיר שגם אני הייתי ב-Dublin Castle pub. אמרנו שבאמת כדאי לחלק פלאיירים להופעות הלהקה לאנשים מביני עניין. ובאותו העניין - רוק נ' רול הוא חיספוס הרוח שמנצחת!!!

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  8. Oren, thank you for your poignant and honest writing. Hoping and praying for peace and joy for you and Beth this holiday season and always.

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  9. Just now reading this, as I've been caught up in the agony and the ecstacy that is Christmas. Good to hear from you, what's going on in your head and heart. Seems like there's a lot, so please keep sharing it.

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  10. I think you are amazing. Thank you for writing and sharing your thoughts.

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  11. I was 1 yr old when my father died. I am now 60. I haver never forgotten him, I have many pictures, many stories from my uncles and aunts, and a few of his personal effects. Your children will remember you, and when it is time for them to leave this world, they will see you again and be comforted. I wish you years of life to spend with your family. The letter writing...such a wonderful gift.
    👍 Gerrie

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  12. See! I keep telling people that being an Atheist doesn't mean you don't believe in anything. Life can have romance and things can have meaning beyond themselves. Another slice of life well captured. And keep up the fight, whatever that means.

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  13. Thank you, I am glad you are OK. I am praying your trip to London is blessed.

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  14. Here's a tip: If you're not eating much, take those meal shakes instead- add almond extract to the chocolate flavored, orange or cherry extract to the vanilla. One third cup of pasteurized egg beaters will boost the protein level and make the shake taste better also.

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  15. I was so happy to read this today, this has been a terrible year for losing some of the best people I have met personally and some not, ..I am so glad you are still with us, if you keep on fighting I will keep on praying!!

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  16. Thanks. I did lose a bunch of weight, and there's a limit to what I can bear to eat. I've found Haagen Dazs Strawberry ice cream to do good for me.

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  17. I love this. Letters mean so much. I also listen to recordings of my dad ALL the time. They just pop up on my iTunes. I suspect your kids will know you better than many kids know their dad.

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  18. Thank you. I've been writing letters, but I've been postponing making a recording--not sure why.

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  19. על הכפאק. עכשיו בדיוק הולך לקרוא את הרשימה הבאה שלך
    מה-22/12 אעדכן בהתאם...

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  20. Thank you for your beautiful writing and for the reminder how precious and brief life is, even for those of us not so acutely aware of it. Thanks for exemplifying how to live it with grace.

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  21. Even though I was 20 when my father passed, the most cherished item I have from him is a letter that he had stashed away in my luggage as I headed off to college one day. In fact, if I lost every other item, I'd be ok, as long as I had that one letter. I guarantee the letters will mean something to them. Dear Oren, I wish you well.

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  22. Thank you--it's good to know.

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  23. Dear Oren,
    I love that you’re writing letters for your kids. I lost my dad nearly 3 years
    ago, he wasn’t much of a writer. I have a book where he jotted down notes in
    the margins. I also have a note he left the plumber at our beach house at the end of the season… I found it the following spring, after he passed. It says: “turn the heat off in the girls room.” Such profound words – right? I keep them both in my nightstand b/c I love looking at his hand writing. I guess my point is, no matter what you write… your kids will love it. I hope you stick around for a good long time & keep writing for them & us. Be well.

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  24. Hey Oren, another thing I was thinking, just to take the pressure off a recording... I would call my parents and just record the whole conversation, just to have their banter on tape. When you guys just have a "normal" dinner etc, record it on the iPhone, don't tell anyone, so everyone is themselves. The joking, the nagging, the whining the "eat your peas or no TV"... all those normal family moments, listening to them later, it's all good, it's all precious. Laurie

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  25. Make videos...I wish I had more of my lost friends and family. To just hear their voice again and to feel the energy from watching. Why wait? Take it of you and them and the present surroundings. Tour kids will never forget their daddy.

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  26. Thank you. So far so good--I've already been lucky enough to have the 7th birthday letter not sent to my now 7-year-old son. I have a 5th birthday letter written for my girl, and I hope to avoid her reading that too.

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  27. I don't know what to say. I just wanted to let you know I was here and thinking about you. And you made me cry. Jerk.

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  28. Oren, my niece came into my life as a 5 year old when my twin married. At two years old, Maggie lost her mom to bladder cancer. Her memories of her mother were consciously kept vivid by all of the family, and through old video tapes, photos and other tangible things. Please be assured that both of your kids will remember and treasure you always. Now an adult, Maggie has grown up with a wonderful mother in my sister, and cherished memories of the mom who is gone but will love her forever.

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  29. Thank you for telling me that!

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  30. This is one of the most honest and heart wrenching blog posts I have ever read. Honestly, thank you for writing your blog and reminding us to live our lives and not be bogged down with day to day issues that really so not matter. Your writing is beautiful, thank you for sharing. Yor children will never forget you and the gifts you gve them each say are beyond measure. Every day we are with our kids matters.

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  31. How touching. For sure no matter what's ahead on your path, the memories, ah the memories are what will make this journey real!

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  32. Thank you Oren.you're a very brave person!by the way i'm an atheist too.!

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