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[cancer] Why I talk about the Fear, and about cancer in general - Lakeshore
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Jay Lake
Date: 2009-04-04 08:38
Subject: [cancer] Why I talk about the Fear, and about cancer in general
Security: Public
Tags:cancer, child. calendula, health, personal
Blog traffic has built a lot in the past year, and there's always churn in my readership, so I thought I'd touch on why I talk about the Fear, and cancer in general.

Late in the evening of March 29th of 2008, I was admitted to the OHSU Emergency Room for very serious rectal bleeding. As it happened, I'd had a hematocrit test that morning, so we were later able to establish that I'd lost 25% of my blood volume in an 18-hour period. I collapsed inside the ER with blood pressure too low to measure. Various urgent medical procedures ensued. On March 30th, I was diagnosed with colon cancer, Tubulovillous adenocarcinoma with suspected lymphatic involvement.

I immediately made a decision to go very public with this. Some of that is just symptomatic of my pathological extroversion, but more of it was due to the secretive and shameful nature of cancer. In some very real senses, "cancer" is the last dirty word. I blogged all through the process of diagnosis, treatment and recovery. I talked about the funny bits, the stupid bits, the painful bits, the emotionally damaging bits, and the hopeful bits. See here for the history: [ jlake.com | LiveJournal ]

Why?

Because it shouldn't be a secret. Because far more people than you and I will ever realize have gone through these experiences. Maybe the gal in the cube next to yours at work. Maybe a friend who never mentioned his prostate cancer from fifteen years ago before you knew him. Your boss, your pastor, your grocery store clerk. And while everyone has the absolute right to as much privacy as they wish, no one should be forced to make this journey alone.

My cancer so far has been an amazing gift, filled with hope and benefit and growth for me and many people around me. After these next round of tests on 5/14 and 5/15, I'll be as close to clear as I can be before the five-year survival clock is run out successfully. My story came out well, despite the Fear and the pain.

Not everyone's does.

So I talk about it, because I can. It's my personality, and I have a platform to reach many eyes and ears. Because maybe in talking about it, I can lend courage to other people. Maybe in talking about it I can grant understanding to other people. Maybe in talking about it I can make others' experiences a little better. Maybe in talking about it, I can steal cancer's power away, and give it to everyone who desperately needs a piece of that power for themselves.

And ultimately, talking about is what takes away my own Fear, lets me love the_child and calendula_witch and everyone else in my life as fiercely and as powerfully as I do.

Thank you for listening.

Originally published at jlake.com.

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suelder
User: suelder
Date: 2009-04-04 17:11 (UTC)
Subject: (no subject)
Blessings on you and yours.

Suelder
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farmgirl1146
User: farmgirl1146
Date: 2009-04-04 17:14 (UTC)
Subject: (no subject)
I hope "the fear" keeps you going to the tests on a regular basis. Distraction, good intentions, and a lack of fear give cancer time to grow instead of gotten rid of successfully. Fear is very useful if looked on as a tool.

Glad you wrote this. Thanks.
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torreybird
User: torreybird
Date: 2009-04-04 17:17 (UTC)
Subject: (no subject)
Thank you for writing out loud. I also find it easier to measure the extent and limits of the Fear when it's lit up brightly, whether or not it's comfortable lighting.

Peace and deep breathing :-)
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User: (Anonymous)
Date: 2009-04-04 17:29 (UTC)
Subject: (no subject)
And in stealing Cancer's power away like that, you also help those who fear getting it -- sure it's something many people should be concerned about as they get older, just like the dangers of heart attack or stroke. But Cancer evokes an insidious kind of fear even in healthy people that would be well worth ridding ourselves of.

And anything that takes away your own fear is always a good thing. A life lived in fear... and all that.
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brent_kellmer
User: brent_kellmer
Date: 2009-04-04 21:07 (UTC)
Subject: (no subject)
sorry -- that was me. I somehow got logged out of LJ...
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User: xjenavivex
Date: 2009-04-04 17:57 (UTC)
Subject: (no subject)
Thank you.
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(no subject) - (Anonymous)
User: joycemocha
Date: 2009-04-05 03:07 (UTC)
Subject: (no subject)
I come from a family with a history of colon cancer--paternal grandfather, paternal great-grandfather, paternal great-great-grandfather. My father did not die from colon cancer but from lung cancer (smoker); however, he went in for regular colonoscopies and had precancerous polyps removed on a regular basis. My brothers are both significantly older than I am (17 and 15 years older) and both have had precancerous polyps removed. I have had The Discussion regularly with my Kaiser providers; that said, I had a sigmoidscopy at age 40 for irritable bowel disease and things were clear, so we were comfortable in waiting until age 50 for my first colonoscopy.

It was clear. No polyps--yet.

So hang in there. Neither of my brothers nor my father had to have surgery. You know what you need to do, and you're doing it. Both my brothers are in their 60s and doing well. My understanding (based on my father and what my brother discovered) is that if you keep on top of those polyps and keep them monitored, you're in good shape.

Kind thoughts to you.
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User: mmegaera
Date: 2009-04-04 22:52 (UTC)
Subject: (no subject)
Keyword:garden
My sister is like this about her brittle type 1 diabetes, although not to the degree you are (she doesn't blog about it, to the best of my knowledge, but she has been involved in getting the word out and working with clinical trials and so forth for a very long time). I think it's the most sensible way to treat something like this.

Somehow, taking a disease like this and making it something that people aren't scared to talk about makes the disease smaller somehow. The person is not the disease. The disease is not the person.

And it's damned brave. So there.
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Pam
User: musingaloud
Date: 2009-04-04 23:20 (UTC)
Subject: (no subject)
Thank you for your open-ness. If, God forbid, the dreaded cancer should happen to me, I would remember your courage, and your fear, and know that it's okay to fear. And to come out the other side.
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User: joycemocha
Date: 2009-04-05 03:14 (UTC)
Subject: (no subject)
Thank you for talking about this, Jay. Cancer is a demon I've had to live with since I was 29 and my mother died from liver/stomach cancer. Then my father died from lung cancer five years later (smoker), plus I have a history of colon cancer on my father's side of the family.

I've been running into a lot of breast cancer since I've become a teacher--at least five other teachers in my district have popped up with it in recent years, including one at my school. Another teacher at the school is a breast cancer survivor. Last year, a suspicious lump showed up on her monitoring. She got the call at school, during class time--and lost it. She's a seven year survivor, but she really struggled with The Fear at that point, saying to us, "I don't know if I can go through this again."

For whatever reason, besides breast cancer rates being high in Oregon, I've now learned that rates of breast cancer are extremely high among teachers. We aren't sure why--stress, or exposure to things like laminator fumes and other stuff like that.

After seeing two people close to me die from cancer, and too damned many people I know struggle with treatment (radiation and chemo is no picnic) I've no illusions about the damn thing. I'm so very glad you're doing well.
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Crystal erm Daisuki-chan
User: love_of_anime
Date: 2009-04-05 06:31 (UTC)
Subject: (no subject)
Thank you for sharing. The reason I spoke up is because in '07 my father was diagnosed with level three Non-Hodgkins Lymphoma. Weirdly enough his doctor is up at OHSU also. He had to undergo a type of IV chemo for five hours each month. He just recently went back for a checkup and we haven't heard anything yet. Again big hugs, and I have you in my prayers. :) Enjoy China....
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russ: zen
User: goulo
Date: 2009-04-06 14:06 (UTC)
Subject: (no subject)
Keyword:zen
secretive and shameful nature of cancer. In some very real senses, "cancer" is the last dirty word.

I hesitated to ask about this, but I suppose we know each other well enough, and you're into philosophizing and answering personal questions, so I decided to go ahead and ask: In what sense is "cancer" the last dirty word?

Was this just an off-the-cuff remark, or do you really mean it seriously? Because I feel like I must be misunderstanding what you mean, if you mean it seriously.

Obviously cancer is a serious thing - that's not the point - and I certainly am not trying to pooh-pooh the undeniably huge impact it's had on you, nor am I trying to make some absurd ranking of how serious or tragic various human problems are.

It's simply that I never thought of secrecy or shame as a particularly specific part of the cancer experience, as opposed to any other life-changing life-threatening problem. If someone were to ask me to name some secretive and shameful things, I admit cancer wouldn't leap to my mind. So I wonder what I am missing.

I actually hear and read about cancer frequently, including personal stories of people having it or mentioning a friend or relative having it. (E.g. Anna's mom just mentioned during dinner yesterday that a long-time friend has cancer.) Such discussions almost always prompt sympathy and good wishes... not what I'd expect from something dark and shameful.

In terms of disease, something like HIV/AIDS or any other sexually transmitted disease seems to have a heck of a lot more stigma and taboo, both from judgmental puritanism that the patient deserved it, and from fear of their contagiousness. Leprosy also seems to have a lot more shameful baggage and fear of contagiousness.

And surely various non-standard sexualities (e.g. pedophilia to name an obvious example) would be much more shamefully guarded secrets for many people (including for legal reasons) than having cancer.
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User: mrtact
Date: 2009-04-07 18:43 (UTC)
Subject: (no subject)
My dad got diagnosed in January, after ignoring the warning signs for better than a year. He's managing things, and by all accounts it's going well, but he's at stage 4 and can't be cured. Anything people can do to take the shame and stigma out of this kind of illness is progress, as far as I'm concerned.

Thank you.
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