No, it doesn’t always get better

My nurse called me on my way to the hospital this morning and told me I had to stop at the eye clinic to redo part of the test from last week. The doctor at the clinic explained that my ocular pressure was a little high last week–not much, 22 mm Hg, the normal range is 10-21–so he needed to test the pressure again and measure the thickness of my cornea. Normal cornea, ocular pressure still 22. He tells me to ask my nurse if she wanted him to prescribe eye drops. I couldn’t get a hold of her, so I paged my oncologist. She wasn’t available, so someone else from her team called me back. Yes, he said, get him to prescribe the drops. 

So I go over to the hospital and have my blood taken and go upstairs to meet my nurse to start the trial. It’s busy and I have to wait awhile before I get a room, but I get one eventually and the oncologist taking the place of Dr. Siu came in with my nurse and started talking about the eye thing, how they didn’t know what was causing the pressure–the doctor said it’s probably not an issue, I might just have a higher than normal baseline, everything else is fine–but because the MEK inhibitor was known to cause eye problems, they had to watch out for these things, and he kept on talking without really saying anything, so I finally said, are you telling me I’m not starting the trial today? and he said that was right, but that maybe with the drops, if the pressure goes down, I can start next week, and again spoke without saying anything until I said, you’re saying that even if the pressure goes down, I might not be accepted for the trial at all, and he said, well, the drugs aren’t approved yet, they are still investigational right now and so they have to be careful and they don’t bend on the eligibility guidelines, but we might be able to make a case, but you know it’s ‘first, do no harm’ and I argued that while the drug may harm my vision, the cancer will definitely harm me to death, so what about that? and I said all that as I was putting on my coat because after I heard I wasn’t starting the study today, I just wanted to get out of there.

Then I was crying in the elevator and some woman got on and said, it will get better, it always does, it doesn’t feel like it, but it gets better, and I laughed and looked up at the ceiling and said, no, it doesn’t, and she just said it again, it doesn’t feel like it, but it does get better and I insisted once again that she didn’t have any idea what she was talking about.

When I was busy gathering my things so I could run away from the exam room, the oncologist said, we need to strategize, and I don’t know what that means exactly and I didn’t feel like playing 20 questions with him again to try to figure it out, and just said wryly (or as wryly as you can when you are sobbing), strategize what? This was my strategy. I keep failing treatments and this is the one treatment that has shown to have good response rates with my cancer and you’re telling me I might not be able to get the drug because my eye pressure is one point too high and I can’t even say that I don’t care about the risk to my eyes, that’s not even an option for me? He said Dr. Siu would call me after they talked about my case, and I said whatever and told my nurse to book me another CT scan and tell me when to show up. Then I left. 

There’s nothing I can write to convey how angry I am about this.

*Update*

My oncologist emailed the drug company. If the pressure in my eyes can be brought below 21 with the drops, they’ll let me enroll as long as I keep treating the ocular hypertension.

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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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6 Responses to No, it doesn’t always get better

  1. Oh God. You are so right, it doesn’t always get better. I hope this does, though – how awful being at that cliff where you’d even have to debate keeping your vision. Thanks, as always, for posting.

  2. malawson says:

    Alicia,
    You are a brilliant amazing woman. Your words tell truth. My tears and prayers are with you.

  3. Amy says:

    Alicia,
    I always love the precision in your writing- maybe because we have the same kind of cancer its not that I ignore the subject matter but it makes it easier to focus on the writing. I really don’t want to say sorry because it isn’t the right word; I think this week has been a shittacular one and I hope they can make the case for you to be on the trial drug since you and your team have moved in that direction for so long. I know there probably isn’t anything I can do to make it feel better but if you want to go out and get your mind off of things (if its possible) I would love to do something. As cheesy as this sounds- things might not work out the way we want them to but they have some way of working in a larger perspective that we can’t sometimes envision. But then again, everything I wrote could be all crap.
    I’m thinking of you and i am scheduled to be in next week a few days

  4. Anne says:

    the drugs and trials have failed you – you didn’t fail anything. I would suggest quite the contrary in fact….

  5. Connie says:

    just plain rotten

  6. Michelle says:

    Fruuuuustrating. I hope the pressure goes down enough, though.

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