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[cancer] Dipping from the wells of disappointment - Lakeshore
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Jay Lake
Date: 2010-08-13 05:29
Subject: [cancer] Dipping from the wells of disappointment
Security: Public
Tags:calendula, cancer, health, healthcare, personal, religion, travel
Some more semirandom observations about cancer and its discontents.

...

This morning in Link Salad I included a link to a Roger Ebert essay about Christopher Hitchens and cancer. Ebert says a number of interesting things about dying, religion and self. As I highlighted this morning, he comments that being sick is worse than dying, at least in some ways. That was the point of my jeremiad yesterday about my cancer fears.

I also rather like the comments on prayer. As anyone who pays attention to me for more than a few moments probably knows, I am a staunch atheist. This has been a frequent topic of discussion on the blog in the past, my view of religion as such falling somewhere between the Pink Unicorn fallacy and Last Thursdayism. On the other hand, my view of human nature and the human spirit requires that I acknowledge both logos and mythos. That duality for many people is best expressed through faith.

I have one acquaintance who's a committed Evangelical Christian, and has been pressing me hard to "get right with God." It strikes me as moral cowardice of the worst sort for to me surrender my intellectual principles now in the face of fear of death. If I'm willing to live with my beliefs (or lack thereof, in the religious sense), I should certainly be willing to die with them. Otherwise I'm guilty of the same hypocrisy I so constantly rail against.

That being said, for all my quarrels with the formal worldly incarnations of mythos, I do have an immense respect for it, and for the value of spiritual truth. When someone says they are praying for me, I hear love and respect and caring, because I understand the importance of that prayer for them. Likewise, when people light a candle or send me energy, or whatever their spiritual practice suggests to them. That is a focus of goodwill on me that I would not dare deny for simple civility if nothing else, and far more than that, something I welcome and appreciate and for which I am profoundly grateful.

...

Coming at this from another angle, I find the response of my doctors to the latest round of cancer to be a bit unsettling. My medical oncologist was visibly upset about the new metastasis, which is decidedly not her usual modus operandi. The surgical oncologist also found this new round quite surprising. This continues to suggest to me what I've thought for a while, that the progress of my disease is pretty far out on the edges of what is expected for this type of cancer, and pushing the boundaries what the treatment protocols indicate.

I was discussing this with my therapist yesterday. He asked if at some point I would need to leave my current hospital and seek treatment elsewhere, at a dedicated cancer center. Since my cancer is arguably aggressive and almost certainly chemo-resistant (at least to the FOLFOX cocktail), this is not a bad question. I have a great deal of confidence in my current oncology team and in the treatments to date, but obviously the progress of my disease is ahead of the effectiveness of those treatments.

So, I don't know. Some research on my part (or possibly on my behalf) is required. I cannot see any reason not to proceed with the current plan, but if it comes back again, especially with a repeat of the swift intensity of this most recent metastasis, I am going to have to rethink. One thing I will be asking for is a 3-month CT scan during the chemo cycle. Had we done this on the last go-round, we would have discovered far sooner the ineffectiveness of the chemo regime I spent the first six months of this year enduring for what turns out to be no good at all.

In the mean while, we await the results of Wednesday's CT scan to determine whether calendula_witch and I get to go traveling, or just dive back into the medical system that much sooner. Not that I've really left it...

I say to you again that I do not recommend cancer as a hobby.

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cathshaffer
User: cathshaffer
Date: 2010-08-13 12:43 (UTC)
Subject: (no subject)
I support the idea of a second opinion at a nationally ranked cancer center, and I am not sure it's safe to wait until after this treatment cycle. I know it takes time and energy. I wish I could loan you some. I know you did it once before, and the recommendations were the same, but the new treatment plan seems so similar to the old one that failed...

Regarding religious conversion, would you think someone was a hypocrite who was a lifelong christian, but decided that they no longer believed in god? Change and conversion are different than hypocrisy. And it is not hypocritical to recognize that there are aspects of your personhood which are not addressed by atheism and that you might like to explore another spiritual practice for tools you can use to cope with the ongoing crisis in your life, if that is how you feel.

Now, I think it's more than a bit impolite to press someone who is suffering from cancer to "get right with god." Sort of implies you did something wrong, but you did nothing wrong.
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User: joycemocha
Date: 2010-08-13 12:53 (UTC)
Subject: (no subject)
I have to second this last about the impoliteness of "getting right with God" from the evangelical friend (and wince, and sigh). Yeah, I know it's the hallmark of the evangelical, but still...

I don't know. The most peaceful and accepting passings I've known have been of fellow Catholics. Not of Evangelicals. I suspect that more than anything else, it has more to do with the rituals the Church has around extreme illness and dying (the Sacrament of the Sick, which used to be called Extreme Unction and only given to the dying, now given in extreme illness). But those rituals aren't just for the sick and dying, they're also for those around them.

But Jay, peace be upon you, and may this latest result not be what you (and we) fear may be the trend.

And yeah, I also second the idea of a second opinion given the aggressiveness of this cancer. Perhaps a center experienced in those who've had the youthful exposures you've had, if there's any such thing out there.
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Jay Lake
User: jaylake
Date: 2010-08-13 12:55 (UTC)
Subject: (no subject)
Getting a second opinion is probably a good idea. At this point, I don't see how the surgery is *not* going to happen, if you take my drift, so I may wait until afterward to seek it, as the post-operative treatment strikes me as more at issue.

I believe I will call the insurance company today and see what they have to say. They funded me getting a second last year.
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cathshaffer
User: cathshaffer
Date: 2010-08-13 13:05 (UTC)
Subject: (no subject)
Makes total sense. Your second opinion will want the surgery/biopsy, too.
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Jay Lake
User: jaylake
Date: 2010-08-13 12:58 (UTC)
Subject: (no subject)
Regarding religious conversion, would you think someone was a hypocrite who was a lifelong christian, but decided that they no longer believed in god? Change and conversion are different than hypocrisy.

Hmm. Good point. I shall have to think on it, since I'm certainly guilty of observer bias here. (Ie, my very first response to your question was to think, "Well, they'd have come to their senses", but that is unfair of me, and wrong on a number of levels.) Thank you.
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cathshaffer
User: cathshaffer
Date: 2010-08-13 13:05 (UTC)
Subject: (no subject)
LOL! You do what you need to do to take care of you. *hugs*
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daveraines
User: daveraines
Date: 2010-08-13 16:56 (UTC)
Subject: (no subject)
>> Change and conversion are different than hypocrisy.

I ditto. Life is change, new data, new experience, and so on.

Re: get right with God -- I speak Evangelical, but only as a second language. Though Evangelical still sounds odd and even rude to me, it's often (not always) meant kindly. It may be the only language your friend knows for subjects like this.

Someday I'll make a list of Great Overlooked Bible Prooftexts. This one, from St. Paul, is among my favorites: "What business is it of mine to judge those outside the church?" (1 Corinthians 5:12).
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martyn44
User: martyn44
Date: 2010-08-13 12:44 (UTC)
Subject: (no subject)
Anyone who thinks you need to 'get right with God' (or anyone/thing else) doesn't really understand. My understanding is that while God might appreciate nice words well sung she really appreciates good deeds, and can see through flim flam like its not there. Death bed conversions don't mean much. A person of principle who throws up their hands when the going gets tough isn't really that much of a person on principle. And you give the impression of being a person of principle even when the going gets about as tough as it can get. Stay that way. Don't give that to cancer.

Me, I'll continue to pray for you because that's what I do and I don't think it can do you any harm, and I don't care about your relationship with God, because that's your business and none of mine. Be strong. Get well. Live a fine life with those who love you. Like the song says, love like a man.
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Talekyn
User: talekyn
Date: 2010-08-13 13:14 (UTC)
Subject: (no subject)
*sigh* The whole "get right with God" thing always rankles me a bit. I often refer to myself as a "recovering Roman Catholic," or I revert to the old Shakespearian "There are more things in Heaven and Earth than are dreamt of in your philosophy" line to describe what I believe. This isn't the place to go into my particular belief system, of course. More my way of saying "I know where you're coming from." I have a very close friend who is a fairly "Fundamentalist" Evangelical Christian. Early on in our friendship, she told me she prayed for me every day, that I would "get right with God and give up homosexuality." That could have been the breaking point of our friendship -- and had I been a more close-minded person, I might have ended it right there. But just as I have the right to be who I am, she has the right to be who she is. And through my cancer experience, she was one of the strongest emotional supports I had. So I also agree with you that accepting people's prayers / positive energy / whathaveyou is not just polite, but on some primal level I think it's beneficial to the sender as much as the receiver.

Glad to hear you're thinking of a Cancer Center consult after the surgery. It'll be expensive, but maybe a fresh set of eyes will see something your team missed.
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lotusice
User: lotusice
Date: 2010-08-13 13:26 (UTC)
Subject: (no subject)
I happened to have moved towards the end of things, so I went from one style of followup to another. My MA doc was conservative in her approach, my first MD doc bordered on the histrionic. I realized that my philosophies about my risk and my body didn't really mesh well with this second doc. She was of the "moar scans all the time" school, which doesn't work for me at a number of levels, starting with the stress of the scan/wait for results process, and moving onto the fact that a lot of the scans aren't good for me either.

I got a recommendation to another really good doc, who is calm, reasonable, has a priority system about these things that makes sense to me, and really respected my wishes about not going through a scan/diagnosis process once a month just because it might be safer. As it turned out, he's been the best doc to have across the board and as much as I love my doc back in MA, I kind of wish I'd had him from the start.

Which is all by longwinded way of saying that my situation is of course different from yours, but... there are so many unknowns, and so few securities, so the idea of changing docs wasn't even something I considered, when my initial doc was wonderful and I adored her and she made a heinous process more bearable. Her sons all played hockey in Russia, and we talked hockey and she was like a mom and I wouldn't have even considered leaving her practice.

OTOH, the move forced my hand and as much as I love my old doc, I love my new doc more, and in terms of care, he's just... better. He's just as personable, but he's also just better in many ways, and I agree with his approaches more. The specialists he sends me to are without question better.

So, yeah. I get that it's a hard leap to make, hard steps to take when you're already feeling overwhelmed and burnt out and eaten alive by the stupid process. But it's also sometimes worth pursuing.
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e_bourne
User: e_bourne
Date: 2010-08-13 14:15 (UTC)
Subject: (no subject)
Might it be possible, after surgery, to ask your doctors advice on going to a more specialized facility? My experience is that, while they won't volunteer, if asked they will be forthcoming. And, if they aren't, that also tells you something.

Also, I believe it helps with your insurance company to swallow that pill if it ends up being a path you want to pursue.
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fjm
User: fjm
Date: 2010-08-13 14:31 (UTC)
Subject: (no subject)
Of course, "Christian" is only a subsection of "believer in God" anyway, and it strikes me as rather impertinent to assume that a human can tell whether God thinks you are "right" with him or her.
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Anna Feruglio Dal Dan
User: annafdd
Date: 2010-08-13 15:55 (UTC)
Subject: (no subject)
Oh yeah. This.

For me as an atheist in a sense it's easier to pray for believing friends that it is to deal with atheist friends. I pray for my grandmother - I don't believe but she did, and although I can't explain why, it seems to be that I am pleasing her in hindsight, if you know what I mean. I didn't pray with her when she was alive, because that would have been a lie. Yeah, I know, not rational, is it?

Me and my atheist friends share the awareness that there really isn't any way for us to control the universe and make it do what we would prefer. It's a hard awareness, and as Robert Sapolsky said, demonstrably leading to more stress, reduced quality of life, and so on. But it happens to be what we believe in.
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adelheid_p
User: adelheid_p
Date: 2010-08-13 14:45 (UTC)
Subject: (no subject)
On the whole spirituality/faith issue, it is my opinion which is based loosely on observation and some fact, that everyone has a different level of spiritual need and that this level of need changes. You and my husband have little or no need and so are comfortable with your atheist stance. I have always had some spiritual need and have become a Unitarian. There are times when my need is greater (notably when my mom had a third of her lung removed due to cancer and when my father had stents put in for a mild heart attack) and I have then sought out services in other denominations. At those times, for me, it wasn't about faith so much as about seeking to satisfy some additional spiritual need. I acknowledge that there is probably a neurochemical reason. Is that a cop out?
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Jay Lake
User: jaylake
Date: 2010-08-13 14:50 (UTC)
Subject: (no subject)
I acknowledge that there is probably a neurochemical reason. Is that a cop out?

I don't think so, actually. (I'm a lot less forceful and judgmental about this than I used to be.) If it's a need, it's a need, doesn't really matter what the wellspring is.

Besides, isn't everything about the conscious experience of being human ultimately neurochemical? :D
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Anna Feruglio Dal Dan
User: annafdd
Date: 2010-08-13 15:56 (UTC)
Subject: (no subject)
Yes, but you can be an atheist and be spiritual. I know I am. I don't believe in the supernatural, but I do think that love, caring, compassion, open-heartedness and all those things make life better. What is that if not a need for spirituality?
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adelheid_p
User: adelheid_p
Date: 2010-08-13 18:03 (UTC)
Subject: (no subject)
I agree, note that I don't claim to be religious or believe in a God. :-)
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adelheid_p
User: adelheid_p
Date: 2010-08-13 14:53 (UTC)
Subject: (no subject)
As an addendum to my last comment, I also agree that the urging on the part of your friend to get "Right with God" is phrased in an insulting and insinuating way.

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Keffy: alexbot
User: kehrli
Date: 2010-08-13 15:23 (UTC)
Subject: (no subject)
Keyword:alexbot
I use a nebulous idea of luck to fill in the spaces where my ability to observe can't reach. It's silly, it's superstitious, I'll talk about it to others, but I won't expect them to join in. It drives me nuts when people wrap themselves in their superstition and refuse to acknowledge reality.

When I told other people in junior high and high school that I was an atheist, at least before joining the debate team and finding the other screaming liberals of Mount Vernon (our team was known for running anarchy as a counter-plan solution to all the other teams' problems...) the conversation usually involved this:

"Why don't you go to church anyway, just in case?"

To which I explained that it seemed disrespectful to the other people at the church. I also explained that since I was pretty sure a deity would be able to tell if I was lying or not, it'd just be a waste of everybody's time.

"But even if you're a good person, God will still send you to Hell if you don't believe in him, so you should believe just in case."

To which I explained that as far as I was concerned, if their deity was really that petty, I'd rather face the music than do as I was told by something I couldn't respect.

I also remember a friend of mine at 13 telling me that he was going to confess all his sins and convert to Christianity when he was old and about to die. I remember feeling betrayed and horrified, because suddenly I was the only atheist I knew again, and I was going to have to go back to searching through dogpile and reading articles by Objectivists as to why it as OK not to believe in a god. I mean, sure, he said he was an atheist still, but if he was that concerned, it suggested to me he entertained more of a god than I did, and was just actively denying that. Which doesn't bother me now, but I was a snotty teenager back at the time.

Of course, then there were those days when I had a Darwin fish on my backpack, which was my response to the number of kids with Christian fish on theirs, and just wearing that made a bunch of people rather angry. This isn't surprising, considering a) racist-supreme Glenn Beck is from MV and b) the nearby town of Burlington had a "please make your biology teacher stop teaching intelligent design" debacle.

So I feel you on not wanting to "Get Right With God" or whatever just because you're sick. You'll be spending all the time you could spend on joining a religion with your friends and family instead, and I think that's a better use of time in general, even if you're not sick.
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barbarienne
User: barbarienne
Date: 2010-08-13 17:40 (UTC)
Subject: (no subject)
Pascal's Wager ("God will still send you to Hell if you don't believe in him, so you should believe just in case") is so easily refuted I remain surprised that people continue to use it.

My response to that one has become, "But Zeus and Athena and Horus and Shiva will still be angry. I don't have time to placate them all."
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barbarienne
User: barbarienne
Date: 2010-08-13 17:31 (UTC)
Subject: (no subject)
I think at this point you no longer qualify as a hobbyist cancer patient but have achieved full professional status. No cancer Olympics for you!

(beg pardon; dark levity is my family's way of dealing with stuff, and you strike me as being somewhat in that vein)
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Jay Lake
User: jaylake
Date: 2010-08-13 17:38 (UTC)
Subject: (no subject)
Hmm, do you suppose someone makes "Professional Cancer Patient" gear? :p
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sheelangig
User: sheelangig
Date: 2010-08-13 21:51 (UTC)
Subject: (no subject)

If they don't, there's always Cafe Press and that ilk.

I got Pam a baseball cap that said in huge letter, "Brain Tumor". It scared the crap out of most folks who looked at it and they wouldn't talk to her. She laughed and laughed and laughed at the folks who just sort of backed away from her and her hat.
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User: deborahjross
Date: 2010-08-13 21:27 (UTC)
Subject: (no subject)
Lots of thoughtful discussion here.

Second opinions can be helpful even when they contribute no new information or plan of action. This is scary stuff. What do your docs think about consulting a cancer specialty center?

In my version of Judaism, what one believes is of no consequence compared to what one does. Be kind. Fight injustice. Take care of those less fortunate. Share joy. Act with integrity.

Our deeds, not our thoughts, bring grace to the world.
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sheelangig
User: sheelangig
Date: 2010-08-13 21:53 (UTC)
Subject: (no subject)

I find that I'm relieved to find that you don't mind that I pray for you. You have probably said that before, but I missed it or lost it somewhere. So I've been keeping it on the down low.

Just so you know. Every. Damn. Day.



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Jay Lake
User: jaylake
Date: 2010-08-13 21:58 (UTC)
Subject: (no subject)
'tis all good. :)
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