The Things That Wake Me Up At Night

I am starting to understand why I am not receiving treatment. It doesn’t mean I won’t be asking for other opinions, but it’s starting to sink in that there just isn’t any effective treatment out there right now. And I’m not going to keep looking for opinions until I find someone who is willing to throw chemotherapy at me or cut me open — I am starting to hear from other women living with this, and those receiving active treatment seem to be no better off than those whose surgeons intervene only when a bowel is blocked, a kidney touched, a liver spotted.

I am trying to keep in mind what one woman wrote to me. I don’t want to try and spin this for you, she said, but you need to remember that if you have recurrent ovarian cancer, this is the best news you can get. Time is on your side. And she’s right. Time is on my side — the problem is, I don’t know how much time that is. And blah, blah, blah, I know that no one knows how much time they have, but most people can reasonably expect to live past 40. Or 50. But I can’t. So I fall asleep making lists of things I need to do before I die, and I wake up in the middle of the night to check my email to see if someone has shared anything hopeful, and I add more to my lists.

And with respect to the quote above, sometimes the best news you can get is still incredibly shitty.

I find myself teetering on a line between acceptance and denial — performing a balancing act between understanding that this disease will in all likelihood kill me, that I am actively, though slowly, in the process of dying, and to yet refuse this knowledge. I know it, but I don’t accept it. I am still so discombobulated by the revelation that I have an untreatable cancer that I find it hard to deny that this will kill me. So much energy is spent being sad that I am going to die that it’s hard to muster enough to simultaneously convince myself that I will be the miracle, the exception to the rule. It takes a lot to balance conflicting beliefs.

But here’s the thing. Everywhere I go, there is a shortage of tissue. I cry in all manner of places, places you would expect to cry, even — therapists’ offices, support groups, friends’ houses, the naturopath’s when I’ve warned her I will spend half the visit crying — and there is never enough Kleeenex. At the most, there are three or four. Many times, there’s none. The universe will only let me weep briefly. So unless I want to be the girl who walks around with tears streaming down her face while she wipes her nose on her sleeve in public (what happens in the privacy of my room is sacrosanct), I am going to have to listen to the universe and move past being sad. Then I’ll have the energy to convince myself of miracles and the patience to wait for whatever it is that will facilitate my miracle. Also, it will help me keep my friends. Because no one wants to be friends with the girl with a mucousy sleeve.


About Alicia Louise

I'm a writer, editor, fact checker, storyteller, events organizer, chronically busy yet endlessly lazy, mildly neurotic (though I keep the neuroses well-hidden, one hopes) 32-year-old with recurrent ovarian cancer. I like people and good writing and straight talk. I have a hard time feeling sorry for people, including myself, but the people that I love, I love passionately; one may even say creepily. I try to keep that mostly to myself. I'd like to be charming, but I'm usually just a mess. I'm like a gull slamming into your windshield.
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3 Responses to The Things That Wake Me Up At Night

  1. TW says:

    Those tissues turn into scrunched linty balls in a matter of seconds. And you’re right. There are never enough.

  2. j. says:

    The angels told you that there would be a kleenex shortage.

  3. Aurelia says:

    I will always happily be the friend of the girl with the drippy face.

    Because I have been that girl, for years on end.

    And you could live for a long long time, we don’t know. But we’ll be friends throughout, mucus and all.

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