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Jay Lake
Date: 2010-08-24 05:26
Subject: [personal] Fatherhood in the time of cancer
Security: Public
Tags:books, calendula, cancer, child, family, health, personal, writing
Driving home last night from dinner, I was listening to NPR. Terri Gross was interviewing Scott Simon about his book on adoption, Baby We Were Meant For Each Other. Simon was talking about the mechanics of the adoption process in China, which are very familiar to me as that is how the_child joined our family. Then he started talking about child abandonment and orphanage life in China, which saddened me. Those are realities with which I am reasonably conversant, in the context of being a complete outsider, and they are certainly the realities of my daughter's early life.

What really broke me was when he then started talking about being an older parent (Simon was 50 when he and his wife adopted their first daughter), and what it would mean when he passed away and left his children behind.

When you peel back all the prognoses and tests and procedures and psychotherapy and family support and love, underneath it all, I truly no longer expect to live to be old. This conviction didn't emerge until the first metastasis in my lung. The second metastasis which I'm currently dealing with in my liver has only deepened my sense of fatalism. These days, I define a successful life as one in which I survive in reasonable health long enough to see the_child graduate from high school. She's about to start seventh grade, which means I need to hang in for six more years. Or, given the current metrics, through six more recurrences of my cancer.

None of this is logical. It's probably not even all that mentally healthy. On a day to day basis, I work at being positive, and I believe I largely succeed at it. (Though calendula_witch might beg to disagree.) But when I'm being honest down to the bone, I don't see a long future for myself.

That just is. And in some ways, I think I've accepted my sense of mortality. I will fight for every inch, all the way to full cure or to the end, whichever comes first. If it does come as I fear, I will have many regrets — books unwritten, places unvisited, people not yet loved, the grief and loss of my parents. But what I want the most is to see the_child into adulthood in good order. What I fear the most is never being able to do that.

Sometimes love is a bitter cup.

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Kari Sperring
User: la_marquise_de_
Date: 2010-08-24 13:14 (UTC)
Subject: (no subject)
Build good memories, too. Which you are already doing.
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User: barry_king
Date: 2010-08-24 13:52 (UTC)
Subject: (no subject)
It's not how long you live. It's what you do together during the time you're alive. You'll just have to trust me on that one, 'cause I know what I'm talking about.
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User: nancyfulda
Date: 2010-08-24 14:28 (UTC)
Subject: (no subject)
I agree, it's having children that makes the prospect of an early death so frightening. So far I haven't metastasised, and God willing I never will, but the possibility still hangs like an ominous cloud.

I would hate to leave Fabian alone for so many years, but it's the kids that make my heart hurt. I feel like it's my job to see them safely through their early years, and abandoning my husband to be an only parent before they're grown feels... just wrong.

I also feel guilty because if things go sour, I know I'll have the easy part. Dying isn't so hard as being left behind, I think.

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Mary Dell
User: marydell
Date: 2010-08-24 14:39 (UTC)
Subject: (no subject)
I hope and pray that you have many years of fatherhood ahead of you.

For whatever it's worth: my husband lost his dad at 14, and my mom lost hers at 15. Both of them still feel their dads as a strong influence in their lives, and can say in any number of situations how their dads would have reacted, what they would have thought, what they would have laughed about. The strong relationships they had with their dads in childhood and adolescence really carried them through the experience of losing them.

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User: joycemocha
Date: 2010-08-24 15:00 (UTC)
Subject: (no subject)
This is one of the challenges of parenting.

And yet...I remember, pre-cancer, you expressing the same feeling, only attributing it to your cardiovascular system failing you, not cancer.

Me? If I make 70--less than 20 years away--I'll be very much like my oldest brother, and celebrate that I outlived my mom...who should still be alive today. These days I face a very stark calculus that I've passed midlife, and should not let opportunities slide by. I suspect being married to a 58 year old who's also aware of his mortality does that as well. We were both born to older parents and both sets of parents died in their late 60s/early 70s, so that really does add to your consciousness of mortality, as you approach the age that your parents died. That's the piece of it from the other end. Even though we were young to early middle-aged adults when our parents died, that whole process affected us significantly. Death of a parent, death of a child. Worrying about the future of a young child as you die is a terrifying prospect.

I do remember my father's mood as he approached the age his father died (57, to colon cancer). He expressed the same feelings of freedom and survival at age 58 as my brother just did upon reaching age 70.

Do I let that affect my mood? Not usually. I find the Catholic mentality to be very different from the Protestant one in contemplating late life. The number of Catholic elders I've known who've said "It's time" and died without fuss is a telling point. One quiet feature of lay Catholic practice is the focus on making a "good death." That is, continuing your daily life up to the very end, then dying quietly at home and making your peace with family, friends and God. That's the ideal, and "good death" stories get told and retold within the congregation. You don't hear about them from outside, it's very much a private, parish thing.

Which is good, because the memory of my mother's dying was not very pleasant or good, and I was there for most of it. It was a hard death. I could not manage being at my father's death with the same intensity, especially since I had a young child, so I wasn't there. But reports from one of my adult nieces were that his death was much the same. A fighting death, with regrets, is not pleasant to be around. I think most of the "good death" stories come from people who have reconciled with their mortality in whatever form that takes, and have confronted all their fears and doubts. Then, when the mind goes cloudy before death, the wandering and loss of awareness is not defensive but peaceful.

My in-laws both died in their sleep, at home.

One of my dear friends lost her son to brain cancer in his early twenties. He died at home, under her care, with hospice assistance. She has very vivid descriptions of his near-death experiences, and it was, for the most part, very peaceful (even with morphine, if the mind is not at rest at the end, it becomes very hard).

One of the women on my working mom's elist is dying from pancreatic cancer. She's on chemo round 3, and is a high school biology teacher. She manages to keep on ticking teaching high school biology, including AP. But she recently broke down on the list because her children are high school-aged, and they're making college visits now, while she's still able to participate. One of these visits (and the one that caused the breakdown) was to her undergrad school, where she was arranging her bequest and other end-of-life plans. It's slamming home that she will probably not live to see her kids graduate from college, and it's iffy that she'll live to see both of them graduate from high school.

(There was also an e-group reunion this summer that I couldn't attend due to other commitments, specifically so that we could spend time with her. Much fun was had.)

Lots of rambling on this comment, but it's been useful for me, and I hope it's useful for you (or for others) to read.
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Jay Lake
User: jaylake
Date: 2010-08-24 15:17 (UTC)
Subject: (no subject)
Thanks, Joyce. The main difference between my historical comments about my cardio-vascular system is that we've transitioned from a view of risk factors colored by family history to immediate and relentless illness. Sigh.
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User: joycemocha
Date: 2010-08-24 15:41 (UTC)
Subject: (no subject)
Understood. And since I appear to have inherited my mother's cardiovascular system (her autopsy findings revealed pliable veins and arteries, no arteriosclerosis despite a cholesterol-heavy farmer diet all her life), I have the shadow of cancer looming for my family risk factors. Not a pleasant thing to consider.

Though, given that she was married to a heavy tobacco smoker, and lived downwind from Hanford for a year, plus pesticide exposures, there could be other factors involved. But I had the same tobacco and pesticide exposures (Chlordane in irrigation well in my teens), so I do worry.
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User: the_ogre
Date: 2010-08-24 15:37 (UTC)
Subject: ...
Keyword:Marin Headlands
All I can really say, Jay, is that I hope you are wrong about your longevity. I don't have any arguments to that point - you know your situation far better than anyone else here does - I just hope you are mistaken, because whenever it happens, you will be missed.

Me, I'm staying optimistic - which is certainly easier for me to do.

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User: e_bourne
Date: 2010-08-24 15:44 (UTC)
Subject: (no subject)
Many hugs to you. It would be impossible not to have your medical condition affect everything. How could it not?

However, it's possible to survive. Some of it's medical science. Some of it's the ineffable part of you.

My mother survived colon cancer against the odds, against her doctors saying so, against all logic. One day, it just freaking stopped. She had almost no innards left due to years of surgery cutting this and that out. No one still knows why it just stopped eating her up.

She claimed it was because she could not let me go. My father was an abusive alcoholic, and what would happen to me if she died? Therefore she couldn't die.

Did that make a difference? She thought it did.

Her doctors thought it miraculous. She was cancer free until her early 70s when she had breast cancer. She survived that as well and passed her 5 years. She died at 79 basically because she decided it was time.

So, I give you that story for what it's worth. It is possible for things to go differently. It is possible to suffer from cancer for years, most of my childhood, as my mother did, having your large and small intestines removed, you liver cut away, your stomach almost gone, your teeth completely disintegrate from treatment, your bones be made into matchsticks, and live well for a long time after.

She became a wonderful photographer in her fifties, after my father died of prostate cancer. It's a funny old world.
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Deza: Kids 2008
User: deza
Date: 2010-08-24 18:27 (UTC)
Subject: (no subject)
Keyword:Kids 2008
In 2004, I was told I'd be lucky to live to see my son graduate high school. He's starting fourth grade this week, and with the way my health has deteriorated over the last year it's looking like making it another 8 years may be a stretch.

My daughter, a year younger than yours, knows this. It's not something we obsess on, of course, but she knows I'm on limited time. I feel that I owe it to my kids to not keep them in the dark about any unpleasant realities. When I'm gone, they'll have memories; I want to make sure we all work to make those memories as awesome as possible.

That being said, I'm already on granted time - time that I shouldn't have had. Statisticly, there is no reason I should still be here 18 years after breast cancer. I've already beat the odds. I may not do that as well as my mother has (aggressive melanoma that took over her lymphatic system; she was given 6 months to live 35 years ago and is still going strong), but I really shouldn't complain.

It's hard to face the idea of your kids going on without you. The only sane way to handle that is to make sure those kids are as prepared as possible. *hugs*
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User: barbarienne
Date: 2010-08-24 18:41 (UTC)
Subject: (no subject)
I hope that you get to dance with your daughter at her wedding. And that she doesn't get married until she's 40.

You amaze me, Jay, that you're able to look at all this and think about it and not go retreating into piles of denial. Hang tough, man.
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User: keikaimalu
Date: 2010-08-24 20:43 (UTC)
Subject: (no subject)
I don't think acceptance of mortality is negative thinking. I think it's quiet realism of a kind most people don't have to face till quite a bit older. To me, negative thinking is more of the teeth-gnashing, bitter, resentful, victimish kind, the kind that creates less peace.

My various cancer experiences over the past 7 years have taught me, basically, that everyone dies, including me. There's something strangely freeing about that -- there's no test of goodness or hard work that, if passed, grants immortality.

I wish you and yours the very best lives you can have, for as long as you have. And I hope you have a good long time.
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Anna Feruglio Dal Dan
User: annafdd
Date: 2010-08-24 21:20 (UTC)
Subject: (no subject)
When she will lose her dad, she will go through what we all go through at some point, unless we are unlucky enough to die before our parents. She may be younger and less prepared, but something she will have is the knowledge that she has been fiercely wanted, cherished, and that you crossed the Earth to embrace her.

I don't have kids, because I never could, not for lack of wanting them, but one thing that scared me, and made me not press my various partners, was that having a child means that you will never know how their life will go on after you. The thought that you fling the thing you most love in the world and you will never know where it falls.

All the children I know of people who died before their time (not that they are a huge sample, but still) treasured their memories more than felt their grief. You tiptoe around words like "mother" and "cancer", but they will speak about their lost ones cheerfully and fondly. I suppose they were prepared. It's the sudden death that is more devastating.

This said, you are young and strong, so I say your chances of seeing her graduate are still reasonable.
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User: farmgirl1146
Date: 2010-08-24 22:15 (UTC)
Subject: (no subject)
Keep her close and help her become fearless.
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User: bookish_girl_
Date: 2010-08-25 00:24 (UTC)
Subject: (no subject)
I heard the same story on NPR, and thought of you and yours. I know that my dear ones (though not related by biology) who have passed on are still as near to me as they were before. I still speak with them every day, and their presence is no less vital to my world.
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