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[personal|cancer] This and that and Edith Throckmorton - Lakeshore
An author of no particular popularity

Jay Lake
Date: 2011-03-29 05:15
Subject: [personal|cancer] This and that and Edith Throckmorton
Security: Public
Tags:books, calamity, cancer, conventions, family, health, interviews, personal, sunspin, travel, writing
First, a note on my recently posted travel schedule [ jlake.com | LiveJournal ]. I accidentally omitted my presence as an instructor at the Surrey International Writers' Conference 10/21-10/23. I'm very pleased to be a part of their program!

Also, don't forget the reader interview with me is still open [ jlake.com | LiveJournal ]. Toss me a question or two if you'd like, I'll be answering them sometime in the next few days.

In the writing world, I'm nearly finished with my light revision pass of the first draft of the current tranche of Sunspin. That would be the middle third of Calamity of So Long a Life. Probably that will go out to my first readers sometime this afternoon. Upcoming, a handful of short story commitments and a deep revision pass on Kalimpura. I'll be back on Sunspin in about a month, once I have those other projects dealt with. If you're an editor pining for a new short story from me, now would be a good time to mention it.

Today I'm over to the hospital again for visitation. My friend in the oncology ward is up and down. I continue to be sobered by his experience in a deeply personal way. I also recognize that his approach to his illness is very different than mine. While his story is not mine to tell here, in my case, I fought every inch and step of the way that I humanly could. This I learned from my late friend Edith Throckmorton, who lived into her eighties with injuries and health problems that probably should have laid her under decades earlier.

[info]tillyjane, a/k/a my mom, provided most of Edith's late-life medical advocacy and personal support, acting as a surrogate daughter. That's how I knew Edith — the two of them were church friends, originally.

Edith never gave an inch. Frankly, sharp and witty and kind as she was, Edith was also a dreadful old bat. I know she would have smiled to hear me say that. Because being a dreadful old bat is what kept her going years past the point when any reasonable person would have laid down their burdens. She knew that every surrender was permanent, and was quite vocal about her convictions. Chemo was kind of like eldering, except reversible. Everything I gave up, I lost until well after I was done with the process. I'm still getting things back now, nine months after finishing chemo.

Edith was and is an inspiration to me, even when people around me were telling me that I was fighting it too hard, that I should accept the process.

Never fucking accept anything about cancer.

Three weeks from now, I'll know what it is I have to fight next. If I'm lucky, nothing but fear of the future. If I'm unlucky, then, well, I get to spend another 15-18 months being inspired by Edith on my next journey through hell.

I am afraid.

Post A Comment | 18 Comments | | Link






User: joycemocha
Date: 2011-03-29 13:00 (UTC)
Subject: (no subject)
I found out yesterday that an e-list friend of mine has breast cancer. Stage 1, slow-moving, very minor. Now the joy of this particular list connection is that we also have the cancer radiologist on it (the woman who wrote the purse-holding article), and the two women are both list administrators. So my friend went to the radiation oncologist and consulted with her as well.

She plans to fight her cancer as aggressively as possible. Another writer person, this time editor/nonfiction writer. She hopes to keep competing in bicycle racing throughout treatment (no chemo, just radiation. Well, not just radiation. Radiation is its own personal hell).

Fighting hard is how I plan to meet the big C, should it come to me. Given my family history, odds are good I'll have to confront it at some point.
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Stone of stumbling and rock of offense
User: wordweaverlynn
Date: 2011-03-29 13:13 (UTC)
Subject: (no subject)
My best wishes to you in this fight.
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Kari Sperring
User: la_marquise_de_
Date: 2011-03-29 13:40 (UTC)
Subject: (no subject)
She sounds wonderful.
Hug.
Kari xx
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Hyacinths
User: wordswoman
Date: 2011-03-29 14:30 (UTC)
Subject: (no subject)
I've followed your cancer story with great respect for your determination and strength...and all hope for your good health and long life.

But after my father's death from brain cancer, I became profoundly uneasy with much of the "battle" and "war" language that surrounds cancer. I loathe it almost as much as I loathe the positive-thinking litanies (prayer/faith-based and otherwise) about cancer. I hate the implication that if my father had only fought or believed harder, or pleased God more, he'd have "won" and still be here. He wouldn't. Dad could "fight" stage IV primary brain cancer about as effectively as a rabbit on a highway could "fight" the 16-wheeler he used to drive.

Many many cancers can indeed be fought. Most can, these days. But there remain a few that can only be appeased for a short while, and with those, the "battle to the last" mindset sometimes does more harm than good.
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Jay Lake: cancer-scars
User: jaylake
Date: 2011-03-29 14:32 (UTC)
Subject: (no subject)
Keyword:cancer-scars
I respect your position, and am very sorry to hear of your loss.

Note that I'm not urging my viewpoint on anyone else. It's not a prescription, it's a description.

For my own part, even if this went terminal, I'm pretty sure I'd battle to the bitter end. Because that's me.
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Hyacinths
User: wordswoman
Date: 2011-03-29 14:55 (UTC)
Subject: (no subject)
Oh, understood. And I have been cheering you on, and admiring the hell out of your "Eff you, cancer!" attitude. You wouldn't be the person you are if you could take it any other way.

I just worry that the battleground language has so permeated our culture that those cancer patients whose genuine wish *is* to cease interventions and treatments feel obligated to go on, feel it's expected of them.
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Jay Lake
User: jaylake
Date: 2011-03-29 15:01 (UTC)
Subject: (no subject)
Agreed. And I could imagine reaching a point where, fight or no fight, I don't want to keep being treated.

Thankfully, that's not the path I'm on at the moment.
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shelly_rae
User: shelly_rae
Date: 2011-03-29 16:30 (UTC)
Subject: (no subject)
I'm a 3 time cancer patient. I'm also uncomfortable with the fighting and battle words as well as survivor words. I deal with what life has given me and it's given me cancer and now TBI. But life is dang good and there's so much I want and CAN do. Cancer is not a lifestyle but it's the life I've got and I live it the best I can. Cancer has taken so very much from me. Sometimes the grief of that is overwhelming. But still here. Because life IS good. I was on my bike yesterday, birds were singing, the water of the sound spread wide to the far mountains, dogs wagged hellos and a flock of pigeons raced me along the waterfront their wings creating breezes near my face and it was joyous!

It's not a battle for me to keep going, it's living with joy. Even in the cancer/chemo wards I keep going. I talk to families, other patients, we laugh, joke, commiserate and well I guess we fight but I need a different word. We live.

That being said, death is part of living too. Without it we probably wouldn't know the joys of life (although I'd be willing to test that theory).

And now I've blathered on too much. So...
Anon
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cathshaffer
User: cathshaffer
Date: 2011-03-29 14:39 (UTC)
Subject: (no subject)
I am trying to find a way to address this myself without spending half a day writing a manifesto. Studies show that cancer patients who "fight" fare no better than those that "accept." Ultimately, you are at the mercy of fate--how aggressive is your cancer, is the therapy effective, did your doctor choose the right therapy first time out, or run through four or five others while you got worse, etc. etc.

The language of "battling" and "fighting" cancer valorizes people who survive the disease and denigrates those who "lose" the battle.

Naturally, I don't advocate "giving up" in the sense that you drop all of your work, aspiration, hobbies, and interests and lie in bed waiting to be healed. (I've seen people do this.) However, you can practice acceptance of cancer through the treatment process while still engaging with life and with the world, and not letting the disease define who you are and what you can do. I think this latter is what Jay means, but I wouldn't want people to get the idea that they can will themselves through a potentially terminal disease, and that if they don't get better it's somehow their own fault. It's also good to remember that your body does need rest to heal, and pushing too hard can delay one's recovery.
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Jay Lake: cancer-do-not-want
User: jaylake
Date: 2011-03-29 14:47 (UTC)
Subject: (no subject)
Keyword:cancer-do-not-want
It's not about willing one's way through a terminal disease. My sense of "fight" wasn't with the cancer itself, but rather with the compromises my body and health were making with the treatment. (And "compromises" is putting it very mildly.) It's about willing one's way through daily life, and maintaining some quality of existence in the face of the enormity of the treatment process.

Maybe I'm making a distinction without a difference, and a lot of people argued against my perspective at the time, but it sure helped me cope.
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cathshaffer
User: cathshaffer
Date: 2011-03-29 14:53 (UTC)
Subject: (no subject)
I don't hold with arguing people into acceptance, or any other perceived "correct" emotional state when they are dealing with something difficult. I remember when I was in labor with my son, the nurse at the hospital coached me in lamaze breathing, which I was not a believer in and had not pursued before. I followed her instructions and mimicked the breathing and was praised when I made the "hee hee hoo" breaths through a contraction. "You're doing so well," they said. You know what? It hurt just as much as when I yelled through a contraction. Thus, my conclusion was that the breathing was for the comfort of people around me, not for me. I think the emotions of cancer can be like that, too. I think it's entirely possible that people coach cancer patients to be serene and accepting, because that makes THEM feel better. We have this rather repulsive myth of the cancer patient who is emaciated and bald, but also enlightened, and thankful to God (or Buddha or whatever) that he/she was given ordeal of cancer in order to reach a higher state. Ugh.

To me, I am fine with yelling. Go for it. Cancer sucks. The only thing I take issue with is the idea that you can fight off your cancer by having a good attitude, which doesn't seem to be what you're saying here.
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Twilight: Daria
User: twilight2000
Date: 2011-03-29 15:03 (UTC)
Subject: (no subject)
Keyword:Daria
As much as I suspect we'll end up either agreeing to disagree or something less civilized, I've read (and cannot currently point to, but will hunt same up if necessary) a fair amount of research that specifically says the attitude of the patient is *paramount* to successfully overcoming a disease.
Mind you, there are still those that get you - but the patient that has a positive outlook (not faeries and unicorns, just a healthy forward looking outlook) and doesn't give up is far more likely to do well in recovery from those diseases that *can* be recovered from than those who give up and accept "the end".
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cathshaffer
User: cathshaffer
Date: 2011-03-29 15:08 (UTC)
Subject: (no subject)
No, this is categorically not true and a very harmful myth. Your attitude does not affect your cancer care outcome. I don't have time to write a convincing, referenced article for you--I am on deadline with paying projects. But I am exceedingly knowledgeable about the science of cancer and clinical cancer therapy. Unfortunately, the popular media does buy into the myth that a good attitude will improve your odds of survival, and it's extremely damaging to patients and families that either cannot summon up a suitably "positive" attitude, or end up getting blamed for their own treatment failures. Like I said, I wish I could go get you some well referenced reading material on this, but my time is short. The good news is that cancer therapies are getting better, and there is more hope than ever for people diagnosed with cancer today.
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Msconduct
User: msconduct
Date: 2011-03-30 02:57 (UTC)
Subject: (no subject)
Barbara Ehrenreich has a good summary of this research in Smile Or Die: How the Relentless Promotion of Positive Thinking Has Undermined America.
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mlerules: hedgehead
User: mlerules
Date: 2011-03-29 15:58 (UTC)
Subject: (no subject)
Keyword:hedgehead
Good reason to go get s'more mud under your fingernails NOW.

*hoping fervently for good news in another 3 weeks, but also ready to spend some time bedside as desired and needed if need be*

*heartfelt bear hug*
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Keikaimalu
User: keikaimalu
Date: 2011-03-29 16:48 (UTC)
Subject: (no subject)
I think the battle is to stay yourself, and to hold as much ground as you can against the inevitable changes that cancer brings to your body and mind. The battle can also be not to give in to the mind-numbing panic that makes you a docile sheep who follows the most inflammatory and excessive recommendations of medical professionals. Finding *your* way through -- and not necessarily your doctors' -- can be a triumph, and a reassertion of self.

The biggest risk in cancer is losing not just your life but yourself.

Once the ghost of cancer has entered your life, you can always feel it peering over your shoulder, and sometimes you feel it pressing down on you, pushing you off-balance. For me, the struggle is to figure out who I am now, afterward, and to find my way back to balance.

Edith sounds like a wonderful inspiration to have known. I'm glad she was part of your life, Jay.
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Keikaimalu
User: keikaimalu
Date: 2011-03-29 16:49 (UTC)
Subject: (no subject)
And -- best wishes for clear test results, Jay. Now and always.
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shelly_rae
User: shelly_rae
Date: 2011-03-29 21:25 (UTC)
Subject: (no subject)
Yup. Cancer is a bad roommate. Cancer makes a mess, doesn't tidy up, leaves rings in the bathtub and always drinks the last of the milk.

Trouble is, cancer never really gets evicted. There's always something left behind to annoy.

Or that cancer might come back for.

I know your fear Jay. It's mine too.
Anon

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