It is what it is

My oncologist told me I should play the lottery. There’s a fluid pocket beside your bladder, she said. It’s probably nothing, but maybe it should be drained. I’ll let the surgeon decide. She knows better. If it would go wrong for anyone, it would go wrong for me. At this point I’m a wonder. If my list of complications were attributed to a character in a book, I would mark it with the comment, Not believable. Scale back.

I saw the surgeon. Post-surgery is when you’re allowed to have these fluid build-ups. It’s normal. But given your history, we’ll consider draining. Let me look at how big it is on the CT report and then we’ll decide.”

Nine centimetres. It’s going to be drained. With a giant needle under twilight sedation.

I’m feeling pummeled. A lot has happened over the last three days. Some of it is too personal — to myself and others — to really share here. Some of it is just more of the same. Decisions about treatment. Complications. As mentioned, there is fluid that needs to be drained. Normally it wouldn’t need to be drained, but I’ve had three post-surgical infections that showed up as nothing more than fluid pockets (no pain or fever) until they burst, at which point all three came close to killing me. (Note: you can get really close to death without realizing where you are.) No gambling this time: the fluid goes.

I start chemo on May 16th. If I have the right mutation, I’ll do regular chemo plus an experimental gene therapy drug meant to suppress the expression of some mutant gene. Or something like that. If I don’t have the mutant gene, I’ll just do the regular chemo without the third drug.

People ask me a lot how I’m doing, and I’m generally pretty frank in my answers. I’m not doing well. I’m a mess. Physically, I am fine. I’m the picture of health. But mentally I have more bad days than good. I am on edge all the time. I have three or four days that are nice, and then I plummet for a week.

It’s confusing living in a dichotomous state. For me and others. I can’t really explain how I can be desperately sad at the same time that I am happy. It happens.

It is what is is. I hear this from cancer patients a lot. I use it myself. When I’m trying to explain things, when I’m trying to deflect — it’s a good shorthand. When I start feeling sorry for myself, or try to make sense of everything, it’s a good mantra. It is what it is. This is not a situation I can control. It’s difficult to come to grip with. I am a controlling person. Ask anyone who knows me.

So things are what they are. And that’s okay — this is my decision. I could start treatment tomorrow if I wanted to. But I don’t want to. My disease is stable. My tumor markers are lower now than they were before my surgery. There is little that is changing inside me. The drugs are starting to corral the feelings that are a little too wild. It’s still a big container, but it’s a container.

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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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5 Responses to It is what it is

  1. dusterbed says:

    Did you play the lottery after all? ❤

  2. Sandra says:

    Take a drive to the US and play the Mega Million Tri-State lottery so you can win 1 gazillion dollars 🙂
    xo

  3. Novice says:

    Alicia, it’s great to find you on-line (after meeting you a week ago at Riverdale). You gave very little hint of the gargantuan struggle you are in the midst of. Engaging and humorous, is how I’d describe you, before reading the blog. After reading the blog, I would add “brave.” (I realize you don’t necessarily want to be brave, but you ARE, just for sharing your world with us.) I look forward to reading more of your work.

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