Monday, January 27, 2014

The Unanswerable Question


How ARE you?

Truly, it’s strange that such a simple question is so hard to answer. On a day-to-day level, it changes all the time. If you ask me in passing, the answer might be a simple status report: “fine,” “not bad,” “a little tired,” or “crappy.” If we are sitting together over a cup of tea, I might go a little deeper, talking about how treatment takes a toll over time, or about how my kids are doing. But this doesn’t really get to the heart of the question.

Because the heart of the question has to do with the bizarre incongruence between how I look, which is seemingly fit, normal, with no outward signs of illness, and the dire diagnosis that I’ve been given. It doesn’t fit. It doesn’t make sense. And no matter how many times we try to make the two truths intersect, it is never less challenging to find that ven diagram where “She just hiked 11 miles” and “She has advanced breast cancer” overlap. Believe me, it doesn’t make sense to me either.

I’m fine for now. I went to yoga this morning. We took the kids boogie-boarding last weekend when it was 82 degrees in Morro Bay. We sat on the patio at night and looked at the stars. At the same time, I get an ache in my hip and I wonder to myself, “am I sore from yoga?... or is that bone metastasis?” I can be in the middle of cooking a meal and laughing with friends, and still, in another register of my mind, there is a constant monologue going, a thrum of “how long will this last?”


The difficulty in answering the question of how I am has itself become acute since Micah announced to the Beth Sholom community that he will step down as rabbi at the end of this school year. We made this very difficult decision because this fall I had a string of bad news in succession—hormone treatment was ineffective, I had to start chemotherapy again, I was now ineligible for a promising clinical trial I’d been investigating, bad side effects of various kinds would knock me out for days at a time—which brought home to us how unpredictable the course of this disease could be and how quickly things could turn. We saw that what we usually think we can handle, we wouldn’t be able to handle. And we saw the issue of time, which you always assume you have more of, might actually be right up in our face, so that the decisions we thought we’d make “down the road” actually need to be made post haste. Like needing to be closer to family, taking time to travel, or just embracing working less and being together.

But, “How ARE you?” Well, I’m fine. My doctors have recalibrated things and I’m not getting wiped out by chemo side effects. I’m feeling pretty darn good. But I can’t be fine, because then Micah wouldn’t have stepped down, right?

How can I find a response quick enough for the carpool lane to say “Well, last week sucked, because I had this shitty bone medicine that makes me all achy, but this week I’m feeling good, headed out for lunch with a friend and then to a TJ’s run, but yes, I’m depressed about the insane fact that I have an incurable disease, but it really is a beautiful day isn’t it? No, there’s nothing really to do for me right now, I don’t need meals delivered, because really for the moment, I’m doing OK, even though we’re in the process of changing our whole life arrangement because we don’t know how long I have to live.”

I mostly avoid answering the question at all, because I also crave normalcy. Talk to me please about anything else—celebrity gossip, bad TV, the NYTimes Style section, your kid’s latest misadventure—but don’t ask me how I am!

Another bizarre truth is that I now need a machine to tell me how I am. I can’t trust my own perception. I went in for a scan in January, one that would deliver a verdict on my current treatment. I was feeling good leading up to it, but for all that I’d like to believe my own intuition, I have been disabused of this impulse. Every time in the past two years that I have received bad news, it came right at a time when I was feeling great. It’s a total disjunction.

This time, at least, I can report that the news was good: this chemo regimen is shrinking things, turning the disease “progression” around. Relief. Gratitude. The feeling that I can take a breath and coast for a while.

But it’s never quite as relieving as you want it to be.

A young neurosurgeon at Stanford who has advanced lung cancer published a trenchant essay in yesterday’s New York Times on this question of the angst that can’t be soothed by facts, scans, or statistics: “What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own. Getting too deep into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.”

How am I? How am I? Happy. Intensely happy, despite—or because of—all the looming terror. Anxious, grievously anxious, despite—or because of—all the love there is to share. These intense emotions coexist; there is no dissonance or ambivalence. Both are entirely true. Discussing our move, I explained to my kids what “bittersweet” means. Although the decision to leave San Francisco was forced on us by a horrendous circumstance, we are looking forward to opening a new chapter: we are fantasizing about travel and creative work, the places we want to go and the things we want to write.  Uncertainty is acute, but the future unfurls itself nonetheless.




13 comments:

  1. Having been out of the loop, I just went in search of your blog, really to find an answer to this very question without having to ask. This is not what I wanted to hear, and yet there are few things more moving than learning it through your beautiful words and deeply felt experiences. Again, I so deeply appreciate your sharing your thoughts, and your thinking them in the first place.

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    1. Thanks so much for the kind and thoughtful words, Howard, I appreciate it!

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  2. Every time I read one of your posts I am reminded of how much I admire you and how inspired I am by your candor and tenacity. Start preparing for my frequent visits to Morro Bay! :)

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  3. relate to this more than i want to. thank you for putting so eloquently what's exactly in my head, but in a much less intelligible state. xo

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    1. Take your time with what's happening right now. You needn't feel that you should BE intelligible with all that's going on! I hope we can continue to be there for each other. Damn that Mr. Naka!

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  4. I also admire you tremendously. I've missed seeing you around and was wondering how you are doing, so came here to catch up.

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    1. Thanks, Vicky. Hope to see you in person soon!

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  5. Thanks, Erin...and I'm sorry about being one of the many who asked you the unintentionally irritating question. Next time, let's talk Beiber, Breaking Bad, and Bibi.

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    1. Not irratating, just stirs confusion in me! But, YES, by all means, let's talk the 3 Bs!

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  6. Cousin, you need only answer the way I do - "drunk."

    And now about those Real Housewives...

    xoxo

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