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[cancer] The strange emotional terrain of cancer - Lakeshore
An author of no particular popularity

Jay Lake
Date: 2011-09-26 05:38
Subject: [cancer] The strange emotional terrain of cancer
Security: Public
Tags:cancer, health, personal

Recently I was chatting online with a friend who has a rather different cancer course than mine, and faces even deeper challenges than I do. We were talking about the emotional context of cancer, how it inflected her primary relationship and had played a key role in the destruction of mine, and how difficult it could be to find support for the fear, desperation and depression that can grip one.

I mentioned that I had rather disturbed my therapist with a recent comment that it would almost be a relief if I received a terminal diagnosis, because at least then I would know what was going to happen and plan accordingly. My friend almost burst out through the chat window, explaining she’d had the very same thought, and wondered if she was just nuts.

As I said to my therapist at the time, no, of course I don’t want a terminal diagnosis. I want to live on in health, very badly do I want that. But what both my friend and I are reacting to in having such thoughts is the profound uncertainty and complete loss of control that cancer brings into our lives.

This is so hard to talk about. That comment about a terminal diagnosis would seriously freak out my friend’s partner if she made it aloud. It would seriously freak out my family if I just dropped it in conversation. The people around me so desperately need me to get better, to be well, to stop living under daily threat. For me to confess such a despairing thought is a direct challenge to what their heads and hearts need.

But the despair is real. The risk is real. The reality is huge.

Often when I talk about this, I am reminded by whomever I’m talking to that we are all mortal, that we could get hit by a bus at any time.

Ok. Listen carefully to me, people.

Fuck that noise.

It does not help, and it’s specious besides.

I am 47 years old. According to the Social Security Administration, the odds of a generic 47 year old American dying within one year, of any causes, are 0.4208%. Slightly less than one in 200. (Assuming I’m reading the table correctly.) They don’t get significantly stronger over the next few years of middle-aged life.

My personal odds of dying within the next five years are 70%. That’s seven out of ten odds.

Take your proverbial bus and shove it. That’s not a meaningful comparison, and it sure as hell doesn’t make me feel any better when someone trots it out. The overwhelming majority of people don’t wake up thinking that at least if they got hit by a bus their life would have some certainty and some closure. They don’t have any reason to.

When you live with cancer, especially an aggressive (in my friend’s case) or persistently recurrent (in my case) cancer, you walk with death on your shoulder every minute of every hour of every day of your life. Every time I look at my daughter, I wonder how much of her life I will get to be a part of. Every time I talk to my parents, I wonder how they’ll survive my funeral if I should die before them.

Is it any wonder we have these odd ideas about dying?

Cancer produces some strange emotional terrain. It produces some strange thoughts, that we can feel guilty, or even crazy, for thinking at all. It opens deep wells of loss and regret that will never be filled, even if we survive.

If you know someone with cancer, one of the best things you can do is make it safe for them to think and say these things. Don’t deny it, don’t talk them out of it, don’t tell them it will be fine. For frick’s sake, don’t tell them that any of us could be hit by a bus tomorrow. Just accept their words with love and friendship and an absence of judgment. Because these are ideas and thoughts that if swallowed up can consume a person from within, until they feel like a hollow shell of desperation.

Some journeys you never come back from. But sometimes the people around you can help you on your way.

Originally published at jlake.com. You can comment here or there.

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mevennen
User: mevennen
Date: 2011-09-26 12:47 (UTC)
Subject: (no subject)
I think that, with these kinds of illnesses, it is better to be absolutely authentic in your responses. Cancer frightens me more than anything else. But I'm not the one who has had it. With your loved ones, they will survive and they won't get over it, but they will come to terms with it. They will be some version of OK. I found a somewhat similar thing with being widowed - a bulletin board called Widownet was a godsend, in that you could say anything, uncensored, and it was a safe space to do so. This illness does not define you, but it is about you, not about other people and you can't and shouldn't manage their reactions: that's for them to work out in their own way. I know this will probably be particularly difficult with your daughter, and she may be the one exception.
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Jay Lake: signs-life_preservers
User: jaylake
Date: 2011-09-26 16:05 (UTC)
Subject: (no subject)
Keyword:signs-life_preservers
I know that you know all too well whereof you speak, and I am sorry that you had to acquire that knowledge.

For my part, I am as authentic as I can be, but it's close to impossible not to self-edit around my family. I do better with my friends. It's like I've said before, and very much to your point, cancer is a social disease. The unthinkable becomes routine, the unsayable tumbles out of one's mouth on all too regular a basis.
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User: australian_joe
Date: 2011-09-26 12:48 (UTC)
Subject: (no subject)
I read all this.

I am profoundly grateful that with your challenges you still find the grace to give the rest of us these sorts of heads up. I dare to hope that I will be a better friend to you and anyone else in your shoes as a result of you writing like this. Thank you.

And yes, I am also learning some good coping strategies to deal with others who might ever offer me well-intentioned-but-actually-worse-than-useless comfort. [wry]

The ideas that you and your friend have had do not seem at all odd to me, FWIW.
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Jay Lake: signs-commit_no-nuisance
User: jaylake
Date: 2011-09-26 16:06 (UTC)
Subject: (no subject)
Keyword:signs-commit_no-nuisance
Thank you, sir.
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adelheid_p
User: adelheid_p
Date: 2011-09-26 12:54 (UTC)
Subject: (no subject)
I can totally understand that you want to know a reliable outcome --that you are cured for good and not until the next test result. Perhaps it's because of my dad's cancer that I would never suggest the universal mortality idea. My dad is extremely fortunate that his cancer was caught as early as it was and surgery has, for the time being been effective at eliminating that particular cancer without the need for chemo. And he was able to resume, for the most part, his regular routines and may actually be a bit healthier as a result. He lost a lot of weight due to the esophageal surgery being essentially a stomach reduction surgery because they pulled up his stomach to replace the portion of esophagus that they removed. He may have been 20 or 30 pounds overweight before the surgery and he lost about 50 lbs and had to gain some to be at a healthy weight. That was a battle and he still has to drink supplements now and then to maintain. I still have no idea how much longer he will be around. The good news is that, as of last Monday, he is one year older than his dad was when he died (possibly of a stroke or aneurysm in 1960 but I don't think the cause was clear as it was sudden).
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Jay Lake
User: jaylake
Date: 2011-09-26 16:07 (UTC)
Subject: (no subject)
Good luck and good health to your dad.
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fledgist
User: fledgist
Date: 2011-09-26 13:01 (UTC)
Subject: (no subject)
Cancer is a very scary thing even to think about.

A bit over two years ago, I went to my regular doctor about a bit of rough skin on my chest, just next to my left nipple, that had been persisting for a while. She looked at it. Then said, "You need to see a dermatologist, it might be pre-cancerous." It took all my courage and calm to walk out normally, call the dermatologist, wait patiently till I could see her, and then go. It turned out to be a fungus, much to my relief. But for a month I was carrying the worry "what if it is skin cancer?" around in my head. That was not fun at all.

Then, a year later, I had my own brush with death. A systemic problem which did not involve cancer. The surgeon told me that there was no sign of cancer when he removed my colon, which was something of a relief.
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Jay Lake
User: jaylake
Date: 2011-09-26 16:09 (UTC)
Subject: (no subject)
This stuff can eat your brain, can't it? And I believe remember when you were going through the other issues. I am glad you are better, and non-cancerous to boot.
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(no subject) - (Anonymous)
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Oz Whiston writing as Oz Drummond
User: birdhousefrog
Date: 2011-09-26 13:24 (UTC)
Subject: (no subject)
Living with uncertainty leads to such thoughts. Because if you knew for certain, you could plan. You could act. Limbo would have an end. And yes, it's ok to have such thoughts. Bus-hitting is random and sudden. You're talking about the desire to bring certainty back into your life, even if it's the worst possible answer. And I think that's ok to express. But then, I'm not weirded out by thoughts of death like some folks are.

Oz
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Jay Lake: pissed-satan
User: jaylake
Date: 2011-09-26 16:11 (UTC)
Subject: (no subject)
Keyword:pissed-satan
I'm not weirded out by thoughts of death. I'm weirded out by thoughts of continuing, endless illness.
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Reynardo the Red
User: reynardo
Date: 2011-09-26 13:31 (UTC)
Subject: (no subject)
I hear you. It's certainty. You'd like to know for certain, so you knew where the hell you are.

Like someone whose child has gone missing and they don't know if the child is dead or alive.

I hear you.
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mcjulie
User: mcjulie
Date: 2011-09-26 13:49 (UTC)
Subject: (no subject)
I think I get it.

On some level all humans have to deal with death all the time because that's the exciting thing about our cognitive ability to anticipate the future. But for most of us, for most of our lives, this dealing-with-death is either abstract -- the bus scenario -- or once-removed, when it happens to people we care about.

Serious life-threatening illnesses, or reaching a certain age, both have the effect of making that dealing-with have to be *real*. Concrete. Personal. Not abstract, not once-removed.

You didn't mention this, but I wonder if some of the almost-relief of a terminal diagnosis is the fact that right now you are FIGHTING SO DAMN HARD TO STAY ALIVE. It's physically and mentally exhausting and painful in a way most of us can imagine only because you've described it so well.
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Jay Lake: sanguine-corn
User: jaylake
Date: 2011-09-26 16:13 (UTC)
Subject: (no subject)
Keyword:sanguine-corn
Yeah, I fight hard, and I won't quit fighting until well past the point of no return. And maybe not even then. But sometimes I imagine what I would be accomplishing with all the energy I've put into cancer. Books written, trips take, loves lived. And that makes me very very sad.
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(no subject) - (Anonymous)
Jay Lake
User: jaylake
Date: 2011-09-26 16:15 (UTC)
Subject: (no subject)
Thank you.

:\
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Matthew S. Rotundo: Radioactive
User: matthewsrotundo
Date: 2011-09-26 13:52 (UTC)
Subject: (no subject)
Keyword:Radioactive
Hell, man, I have a pretty low tolerance for uncertainty myself, and I don't have cancer. I can only imagine your daily stress level. It certainly must wear on one. Yours is a perfectly understandable response. No condemnation from this quarter.

The people around me so desperately need me to get better, to be well, to stop living under daily threat.

Yeah, well, it ain't about us. Our well-being is not your responsibility. You have quite enough on your plate as it is. We'll deal as best we can.
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Jay Lake
User: jaylake
Date: 2011-09-26 16:41 (UTC)
Subject: (no subject)
It ain't you I'm worried about, Matt. As I said upthread, my friends are pretty much bricks. And when they get unbricky, they don't generally do it right in front of me.

It's my family that is such a challenge. And I mean that in the most loving way possible.
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User: brownkitty
Date: 2011-09-26 14:06 (UTC)
Subject: (no subject)
I think if I were diagnosed with cancer, I would have begun acting as if I were dying, if only to myself, just to have a bit of stable ground to stand on.

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biomekanic
User: biomekanic
Date: 2011-09-26 14:13 (UTC)
Subject: (no subject)
I don't think that's an unreasonable reaction at all.
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User: joycemocha
Date: 2011-09-26 14:54 (UTC)
Subject: (no subject)
I think a lot of it also depends upon whether the people you are talking to have had significant close personal losses due to chronic illnesses such as cancer or emphysema. Having gone through the cycle with parents and parishioners (as well as a couple of the son's close circle--trumpet instructor and 4-H leader), my reaction might well be different from someone who's not gone through it before.

Additionally, if there's one thing that my Catholic parishes have done well, it's support of the long-term sick, as well as understanding these feelings. Early on after my conversion (when I was still attending Daily Mass), the parish priest announced to the Mass that a well-loved, active parishioner had made the choice to not follow chemo for her latest outbreak of breast cancer and to pray for her/hold her in their thoughts. The choice was accepted by her peers in the congregation and visitation and support plans were getting set up after Mass--no one blinked an eye, objected to her choice, or found it unreasonable, and in discussions with old-timers since then, as well as observations of past dying processes, making that choice is just plain accepted.

Then again, there's a tradition in Catholic practice of the good death--that is, a peaceful and calm dying process with dignity and control. If there's one thing most Catholic parishes do well, it's support of the sick/dying and their families, especially when you've taken the time to build connections. Even relative newcomers get taken care of. Those caring for the dying and those volunteering to help gain support from the community at large by having openings to share their experiences in casual communications at Masses, and those parishioners who aren't direct participants learn about the process from the stories shared (as well as learning how to appropriately respond). Dying well is modeled within the Church as a result. I've learned a lot from those communications. One of my friends within the parish has freely shared her experiences of attending to her dying son, who passed at age 22 from brain cancer. She really helped me when my son first got sick with Crohn's and I feared he was dying.

The uncertainty at your stage is the frustrating part of cancer. With both of my parents, we essentially had a terminal diagnosis up front with no hope of salvation from chemo. My mother had two months post-diagnosis to demise; my father a year (the differences between liver/stomach cancer and lung cancer/emphysema). They tried one chemo on Mom and it was so awful they didn't try another. She was just that far along. Chemo was never an option for my father. In either case, dealing with the verdict just was.

(and for god's sake, if you've never sat with a dying and fearful person in those last clear hours before the final coma, then you've not known what despair truly is.)
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Jay Lake
User: jaylake
Date: 2011-09-26 16:45 (UTC)
Subject: (no subject)
It's such a weird emotional and mental space. One thing I do envy the religious (speaking as an avowed atheist) is the natural sense of community that arises from a healthy congregation. Specifically around life transition events, I can really see the immense value of that to everyone involved. The principals receive support, everyone else gets to pay forward, and learn a bit more about what to expect in their time.
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Tom
User: voidampersand
Date: 2011-09-26 14:58 (UTC)
Subject: (no subject)
I believe the current vogue is "throw that bus under the bus."
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Little and foxy and sexy... what more do you want?
User: little_foxy
Date: 2011-09-26 15:06 (UTC)
Subject: (no subject)
I actually think that it is a sad reflection on society that the talk of death is one of those tabboo subjects, people don't want to deal with it. And that is often made worse in these sorts of situations.

I can completely understand where you are coming from with that statement. Knowing what will happen with a rough time line is so much easier to deal with than all the what ifs.... especially as you are going through those what ifs every time you go in for treatment.

I hope for your mental sake that things settle down into a pattern and you have a bit more control...

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Jay Lake: sanguine-mushroom
User: jaylake
Date: 2011-09-26 16:47 (UTC)
Subject: (no subject)
Keyword:sanguine-mushroom
Thank you. Settling down would be favorite, yes.
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