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[cancer] Being patient in public with the big, magic cancer hat - Lakeshore
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Jay Lake
Date: 2008-05-03 20:37
Subject: [cancer] Being patient in public with the big, magic cancer hat
Security: Public
Location:Nuevo Rancho Lake
Mood:thoughtful
Music:the ticking of the grandfather clock
Tags:cancer, child, health, personal
I went out in public today for the first time as a Cancer Patient. I had emailed the_child's class list about this, specifically so other parents would know why if they heard questions from their own kids, or from her. Today was Mayfaire at the Portland Waldorf School, and lasirenadolce and I went to see the_child in the Mayfaire parade. (She wore her red panda mask which she'd recently made, over a green dress she and her mother had made.)

Various parents approached me differently. D—.'s dad (the donor of the salmon head) shook my hand and asked how I was doing in a very genuine way. Another parent who is a naturopathic physician offered sympathies, and to discuss chemo with me. Another parent gave me a big hug and talked about organizing the class community if the_child needed serious distracting.

But there were a few other folks who saw me and turned away. I don't imagine cruelty, not for a moment, but a lack of knowing what to say or how to approach me. I am being open about this, more so than is normal for a lot of people, and I suppose it makes some uncomfortable. I didn't say anything to lasirenadolce at the time, but maybe I should have.

I'm torn between acting very casual and putting this out front. When I asked one parent how she was doing, she said, "That's not the question, how are you doing?" Yet I'm still a polite human, and it's a genuine question from me. Being a Cancer Patient doesn't excuse me from interest in other people's health and well being.

It was all vaguely weird. Like I was wearing a big, magic cancer hat. (I've thought about asking someone to knit me a tumor hat — more about that later.) Everyone around me seemed so normal. And I know that in a crowd of several hundred there must have been a number of diabetics, people with Crohn's or cancers of their own. We were all just people watching kids dancing.

So I'm torn between being a patient, and being a person. The answer of course is that patients are people, always have been, always will be. I'm just usually on the outside of the big, magic hat.

Now that I'm inside the big, magic cancer hat, I'm making it mine.
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Michelle
User: msagara
Date: 2008-05-04 04:08 (UTC)
Subject: (no subject)
This is probably not something you will want to do, but a friend of mine who was undergoing chemo for cancer had lost all her hair. She had a wig made. She wore it.

When people she had not seen in a while asked her life was going (and this would in general be people who didn't know), she would talk about her work for a bit and then in the middle of a sentence, she would pop the wig off and pretty much fall over laughing at the looks on their faces. And then she would explain.

Since she was the only person I knew well at the time who also had cancer, my view on the seriousness of the situation is irrevocably skewed because... she was always like this.
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Jay Lake
User: jaylake
Date: 2008-05-04 04:11 (UTC)
Subject: (no subject)
Heh. I like that. If I were to wear a wig, it would be Very Silly, but I suspect your friend and I have some things in common.
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robin catesby
User: deedop
Date: 2008-05-04 04:14 (UTC)
Subject: (no subject)
I happen to have a large basket full of Very Silly wigs in my basement. You are welcome to play with them any time. By the way, I think the way you are handling this kicks ass.

Er, sorry about the ass reference.
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Michelle
User: msagara
Date: 2008-05-04 04:16 (UTC)
Subject: (no subject)
She thought whoopee cushions were funny in moderation, and I think she tried to treat everything about the cancer and its treatment as if it were the best whoopee cushion she had ever been given.

The only days that were bad were the very first day of chemo, before the anti-nausea drugs kicked in -- but even in the hospital, she had people in stitches. She liked to make people laugh. She found a lot of things funny that perhaps most people wouldn't -- but it was hard after the first five minutes of this to really think of the cancer, because there was just so much of the person pushing it out there.

I am sure, in retrospect, that this was deliberate -- but she wasn't faking the laughter, either. I admired it, although I think I would not be able to achieve the same effect. Or perhaps because.
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seventorches
User: seventorches
Date: 2008-05-04 04:36 (UTC)
Subject: (no subject)
I've thought about asking someone to knit me a tumor hat — more about that later.

You rang? http://www.theanticraft.com/archive/samhain06/teratoma.htm
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Jay Lake
User: jaylake
Date: 2008-05-04 15:40 (UTC)
Subject: (no subject)
Oh, cute! I want my exact tumor, though.

Little bastard tried to kill me.
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squirrel_monkey
User: squirrel_monkey
Date: 2008-05-04 04:58 (UTC)
Subject: (no subject)
"But there were a few other folks who saw me and turned away. I don't imagine cruelty, not for a moment, but a lack of knowing what to say or how to approach me."

A minor point, but it is possible that at least some of them were trying to give you space in case you needed it. It is hard to read people sometimes, especially in complex situations where everyone comes with their own set of assumptions.
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mevennen
User: mevennen
Date: 2008-05-04 08:02 (UTC)
Subject: (no subject)
Cancerland. Once you've been there, things are never the same again. What it does do is separate the sheep from the goats, in terms of people. When both C and T had it, it made me realise how lucky we were in the people we'd chosen to have around us. But some folk can't cope, any more than some can cope with the bereaved. It's where they are on their journey.
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desperance
User: desperance
Date: 2008-05-04 08:06 (UTC)
Subject: (no subject)
Yup. To some extent, this is what it's like coming out about anything: the same range of reactions, supportive to practical to shying away. Cancer's scarier, though, because anybody can get cancer; there will be some people out there who really resent you for having it so brazenly and taking yourself out and about, rubbing their faces in it. (Actually, that may be more of an English attitude, but there will be a US equivalent.)

And, yes. Being a patient, being a person: they can feel like two different states, because they bring such very different treatments. On the other hand, you're going into patienthood so very much the way you go into everything else, that's got to help. And if it helps any, you get loud cheers from over this way...
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User: ellameena
Date: 2008-05-04 11:45 (UTC)
Subject: (no subject)
That naturopath could be a very helpful resource for getting through chemo. There's a lot you can do in terms of vitamins and supportive therapy to make it bearable. My sister's ex just came over friday, and in spite of the fact that his cancer is pretty advanced and his prognosis is "just don't ask," it was good to see him and he was fun to be around. He mentioned that doing chemo the second time, he was staying with his brother and his brother's wife, and they made him eat every meal whether he wanted to or not, and that seems to have made a big difference. He also cracked us up when my sister jokingly referred to him as chemo boy, and he said, with a very straight face, "I prefer 'cancer boy'."

I suspect those that did not comment simply wanted to respect your privacy.

By the way, I wanted to comment on your other post yesterday, but was puking my guts out from flu and didn't have the strength to type--I think you can totally pull a Lance Armstrong and come back even stronger than you were before. You're a writer. Every tragedy, every setback, every overflowed toilet is an opportunity for growth and deepening the well of creativity.
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Jay Lake
User: jaylake
Date: 2008-05-04 15:41 (UTC)
Subject: (no subject)
I'm sorry you were so ill. And yes, I will make great quantities of hay out of this...
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Gary Emenitove
User: garyomaha
Date: 2008-05-04 13:02 (UTC)
Subject: (no subject)
When I asked one parent how she was doing, she said, "That's not the question, how are you doing?"

Precisely the response I almost always give to someone I know who is less-than-well. I never considered that my response might be taken for less than genuine. (Personally, I dislike the "How are you?" greeting, and more often than not I respond with something other than "Fine" anyway.)

Remember, too, that not everyone is as gregarious and extroverted as you are. You share your love of life with all, and that's a large part of what makes you "Jay." Some folks may not be so comfortable with a big, happy fellow in the first place, and when you place on top of that one of the scariest words in our language, they may not mean to be rude but they just cannot cope.
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Ann
User: ann1962
Date: 2008-05-04 13:46 (UTC)
Subject: (no subject)
I'm making it mine.

That is what you can do. But what you will do, or the cancer will, as any huge life event does, is challenge everyone around you, which reveals who they are. Some will be frightened by that and some will step up. How this shakes out is always surprising.

I think you are remarkable in how you are handling this.
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Hyacinths
User: wordswoman
Date: 2008-05-04 14:00 (UTC)
Subject: (no subject)
This struck a chord for me. My father has brain cancer, and he is so weary of being asked how he feels. Everybody asks, and with each query he feels less and less "normal". He doesn't want to be the 24-hour Cancer Show; he wants to talk about the weather and the baseball game like he always did. But it's hard to avoid being in that cancer spotlight, especially when you've got a form like his where it really isn't going to be cured.
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Pam
User: musingaloud
Date: 2008-05-04 14:32 (UTC)
Subject: (no subject)
My husband is a cancer survivor. He didn't mind talking about it. I remember all the phone calls that came in after the surgery and wondering to myself why he didn't get tired of telling everyone The Story over and over. It would have bothered me, being a more private type person. I wonder if this is the difference with some of the ones who turned away. If they are private people too and know that in your shoes, they'd rather not be asked, or at least *think* they'd rather not be asked, having never been in the situation, and so they think they're being kind by giving you space. And then again, there are those who are scared as hell and don't know what to say.

As for my hubby? We just call him one-nutter now and laugh. He's got a great sense of humor about it, which is pretty important to have.
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(no subject) - (Anonymous)
Jay Lake
User: jaylake
Date: 2008-05-04 14:58 (UTC)
Subject: (no subject)
I understand. I had no ill-will in myself towards those folks, and I also felt very awkward. We don't know what to do, and no one ever knows what's driving someone else inside.
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Rafe
User: etcet
Date: 2008-05-04 15:53 (UTC)
Subject: (no subject)
When my dad went through something similar, it was... well, we pretty much ignored it, other than a possible running gag about "being a pain in the ass."

Given the perceived-to-be-low threat level your Macaroni Invader presents, you'll be seeing no difference in behavior from this quarter.

The high-water mark for colon cancer wit, at least in my experience, was done by some anonymous Buffalo Bills fan, when then-coach Marv Levy returned from getting treated for it, and was met with a bedsheet-sized sign emblazoned with "MARV, HOW'S YOUR ASS?"

I come from a tactful town....
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User: joycemocha
Date: 2008-05-04 16:11 (UTC)
Subject: (no subject)
Many people are afraid of cancer. It's hard to say why those folks turned away--there are many reasons for it that you've already had listed here.

This is for everyone else, but this includes you and yours, Jay--what kind of support do you want in place to help during surgery and chemo? One thing we did for the teacher who had breast cancer year before last was set up a rotating list of people who provided easy meals that were diet-appropriate to have handy during chemo sessions. Something like cook a bland but easy to handle casserole--so you don't have to cook, so your caregivers don't have to cook, so that all they have to do is focus on helping you. It worked out to like maybe 1-2 dishes per week. I can ask our 4/5 grade team for more details as they coordinated it.

Since I've seen it in action at least once, I'm willing to help coordinate something like this.
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User: joycemocha
Date: 2008-05-04 17:49 (UTC)
Subject: (no subject)
Oh, and for anyone who might want to respond but not publicly--send me a message.
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Jay Lake
User: jaylake
Date: 2008-05-05 17:48 (UTC)
Subject: (no subject)
Thank you, Joyce. We're looking at the issue now, it may well be important. I really appreciate your thinking this through.
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User: dirkcjelli
Date: 2008-05-04 16:13 (UTC)
Subject: (no subject)
Well, I'm really not sure what to say, and have been unsure since I heard. I'm glad that they've found this relatively early, concerned that you'll have to go through more stuff, but glad you've got a positive outlook and that this is a very treatable cancer once caught.

-- Brian
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Jay Lake
User: jaylake
Date: 2008-05-05 04:04 (UTC)
Subject: (no subject)
Brian -- thank you. This sucks for me, but it sucks for everyone who knows me, too. I appreciate your care, very much so.
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debbiemumford
User: debbiemumford
Date: 2008-05-04 17:59 (UTC)
Subject: (no subject)
As you said, we're all just people. Some are more at ease with words than others. Some more aware of their emotions and hot-buttons than others. The one thing I know about you, though, is that you will take this experience and create stories that will help folk understand their own experiences, limitations, and knee-jerk reactions.

You're a class act, Jay. Thanks for being a person who can be up front about this big, magic cancer hat.
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jenntheamazon
User: jenntheamazon
Date: 2008-05-04 19:40 (UTC)
Subject: (no subject)
Good for you. :-) Too many people take the "whoa is me" attitude. I'm glad you aren't.

From one with medical challenges (I don't call them problems anymore) to another...I salute you.
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maryrobinette
User: maryrobinette
Date: 2008-05-04 23:27 (UTC)
Subject: (no subject)
You are my hero for how you are handling this.
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