May 222005

Spike and I went to the cancer agency a few days ago to get her quarterly blood test results. The doctor cheerfully said to Spike that she was (and I quote) disgustingly healthy. Yes! Woo hoo! We love hearing superlatives attached to the word “healthy”.

Here’s the thing I wanna share, though…

Funny thing. The chemotherapy side-effects look like the disease itself. So when a cancer patient finishes the chemo that’s 3/4 killing them in hopes of all-the-way killing the cancer cells, and they start looking more like a regular human again, and being able to walk around the block without pausing to rest six times… well, it just seems like they’re better. Folks congratulate them on beating cancer.

Except… cancer is the monster that waits around the corner. Surgery carves out all the cancer that can be seen and reached. Chemo tries to kill any remaining cells. Then the patient is discharged, and… and… waits seven goddamn years for a clean bill of health — waits to find out if the radical surgery and the shocking illness caused by chemo did the job. The intervening time is spent (1) enjoying the heck out of life and (2) if one values ones sanity, not thinking too much about the monster that may be laying in wait.

Here’s more info on recurrence: Dancing with NED

I restrain myself from peering fearfully around corners. But still…

Here’s the problem:

Both Spike and I do well in adverse situations if there’s something to be done about them.

“In order to survive this, I gotta move this mountain from this place to that place? Okay, lemme get my shovel.”

So the whole freakish last year has been a lot of work (each of us with different things to do), and lot of enduring the shitty stuff, and a lot of planning and changing our diet to eliminate chemicals and hormones and additives and such… and even cleaning the doorknobs when Spike’s immune system was down, and, well, there was always so much to do. And with a great deal of help from our friends, we did it.

And here we are, on the other side of the treatment, with nuthin’ to complain about… and now I’m more frightened than I have words to express.

I wouldn’t want to experience my life without Spike in it. She’s wise and warm and brave and funny and she matches me like no other. Her kindness inspires me. Her insight makes me think. I love her because of who she is in the world, and you should too. I will marry her, and in doing so will become the luckiest person alive.
On a visceral level, if I imagine a time when I can’t roll over in the morning and see her smiling at me from the next pillow over, I feel like curling up in a ball and crying. If I imagine a time when I can’t turn excitedly to her and share some new knowledge, or talk over a trouble… the pang of loss — just from imagination — feels like a stab wound. And when I consider the possibility of a recurrence of her cancer taking her from me… I experience terrible feelings of fear and helplessness.

Because, you see, we can’t just plunge in and apply hard work to make the best outcome. We did that part, and we continue to do healthy lifestyle kinda stuff, and besides that we don’t really have any control left, besides avoid-high-tension-power-lines and don’t-get-a-coal-burning-chimney. Our future together is dictated by a toss of the cellular dice, tossed by a universe indifferent to personal loss. And every three months, we go see a doctor, who matter-of-factly reports on the results of the toss.

So for those of you who wonder why I spend a week out of every three months walking around with my teeth chattering — now you know. But I guess it’s the only game in town.

 Posted by at 5:21 pm

  7 Responses to “A note about fear (Post by Elaine)”

  1. E,

    I’ve nothing clever or heartwarming or charming to say. You’re a gift to each other; that much is clear. Thanks for loving someone I love very much.


  2. Elaine,

    I love you so much …


  3. Elaine,I have been down this path,so I know of what you speak.The difference is, that my loved one was my mother …not a life partner.I cannot even begin to fathom the creeping cyclical dread you (both) must feel.

    Hold fast Dear sister,& as I Know you are,experience each moment, hour & day to the Fullest …etch these in your garden of memories …as must she …for who really knows what will happen …despite what must seem some days like stacked odds.

    If you two ever need anything …no matter how small ….please do not hesitate to contact me.

    Sincerely Wolf

  4. I admire you both so much.

    *hugs and kisses*


  5. …and thus doth apprehension maketh cowards of us all.

    The worst fear of my life came to pass, and I lost all that you now enjoy for ever. But the world goes on, and you get used to it, just like everything else. After a while, it’s just another fuckin’ thing that hurts, that’s all.

    It’s never so bad that it couldn’t be worse, and this is one of the fundemental truths about the human predicament you just have to live with, or slash: those are the alternatives at bottom.

    Spike could have been wrenched from you in an instant in a motor vehicle accident, by a fall in the shower, by a stray bullet in a drive by shooting, by countless other completely futile accidents to which mortal flesh is the heir. But she wasn’t: because of the skill and dedication of countless people, she had a fighting chance, and won, which is a heck of lot better deal than most people get on this rotten little midden heap of a planet.

    So face your fear, and eat it. Draw an angry strength from it, and enjoy the victory that has been wrested from the vicious teeth of mortality. Snap your fingers in the face of death that is beaten back, but never vanquished. Eventually Spike will die, as will you, and I, and everyone else. It’s not the destination that matters, it’s how you choose to get there.

    And travelling in fear sucks.


  6. Yeah… it’s a strange thing — if it were bears at the door, or bug-eyed people-eating monsters from outer space, the fear would be flash-fried by anger and determination in a hot second. (“Pass me my axe. Oh, and that carving knife…”)

    It’s the invisible and uncombatible nature of the enemy that’s so… difficult.

    Still learning….

  7. Hey guys,

    Long time, no comment. But here I am. As I read about the uncertainty of cancer striking again, I think a few things. First of all congrats on the positive progress. I recently had a close friend go through chemo and be declared cancer free. I had another acquaintance succumb not that long ago too. I guess ya never know. But it seems like you both have done everything you can to get better.

    Now my Daddy has fairly advanced lung cancer, is refusing chemo and still smokes like a chimney. While it is his choice, it is tough to know we only have 2-5 years or so. It is tough that he chooses some unhealthy things and that as a starving artist he can’t be kept as comfortable as I would like or be able to afford. He also has AIDS so he feels the chemo will kill him before the cancer. He did one round a few years back and won’t do it again. He is 60 and feels he has lived a good life.

    But the positive part of all this is that the quality of those years he has left will be improved in knowing what limited time we have. Nothing like the threat of death to make you value good living more. And at least he gets to say goodbye as he wants on his terms. He has always lived his life on his terms and I would expect nothing different in his dealing with illness. I wouldn’t make the same choices, but I have to respect his.

    Thanks for sharing your journey with this. Hugs to both of you!

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