These are the drugs I take on a daily basis: Bupropion HCL XL, 300 mg, norepinephrine-dopamine reuptake inhibitor; depression. Citalopram, 40 mg, selective serotonin reuptake inhibitor; anxiety. Mylan-zopiclone, 15 mg; insomnia.

These are the drugs I take on a regular, as-needed basis: Oxazepam, 10-20 mg, benzodiazepine; anxiety. Prochlorperazine, dopamine receptor antagonist, 10 mg; nausea (though it apparently is also a potent antipsychotic). Ondansetron, 1 mg, serotonin 5-HT3 receptor antagonist; nausea.

These are the drugs administered as part of the chemotherapy: Paclitaxel, intravenous dose unknown, mitotic inhibitor; cancer. Carboplatin, intravenous dose unknown; Target unknown (to me); cancer. Diphenhydramine (Benadryl), intravenous dose unknown, antihistamine. Pegfilgrastim, 1 mg, subcutaneous injection; stimulates white blood cells. Dexamethasone, intravenous dose unknown, anti-inflammatory and immunosuppressant; nausea. I think it might also work with the Benadryl to prevent allergic reactions to the chemo agents, but I’m not sure. It is the worst of everything listed, even the pegfilgrastim which leaves me feeling like my bones are being broken from the inside (but the pain can be controlled by narcotics). It makes me want to crawl out of my skin and I opt out of taking the three days of oral dex, preferring nausea to the feeling of sharing my skin with some reptilian other.

I was talking to my psychiatrist about my compulsion to tell people about my cancer recurrence. He asked me about the context — if I feel this need to talk with my support group, with family, with close friends, with acquaintances. I nixed family from the list — too loaded and difficult, and besides, they read my blog — and added strangers and people I’ve just met. He mentioned a few times that my support group is an appropriate place to talk about whatever I need to talk about. I assume he was suggesting by omission that other places and people, outside of close friends, are perhaps not appropriate.

He asked me about this compulsion and what drives it. Control was one of my answers. I don’t want to be pitied (which at one point I sobbed out to him with such heaving breaths that “pity” was lost in strangulation, both swallowed and spit out at the same time, which is ironic considering that a person crying with such verve that they can’t even croak out the word “pity” is emblematic of someone who is, at the very least, pitiful) and if I bypass people finding out about my situation by other means, and deliver what needs to be known about me in a matter-of-fact tone, that I can keep people from feeling sorry for me because I don’t feel sorry for myself. I also postulated that I like to be in control of what information is disseminated about me because if I don’t, it’s only a matter of time before I hear that I died last week and was buried on Tuesday.

He said that it sounded like I was afraid of breaking down in front of other people, any people, and asked what would happen if I did. I laughed. I’m not afraid of breaking down in front of other people, I do it frequently, I said. Sometimes it’s cathartic, sometimes it feels as though some kind of connection was made, but often it is mundane, even alienating. And I can’t do it all the time, I finished, it’s exhausting.

I’m not sure what he was suggesting or asking me to think about. I break down. More than most people, less than some. I cry more often in front of people than I do when I’m alone. It starts to feel disingenuous after a while.

I said I felt like the Ancient Mariner. He said I was distressed. I started crying and said in a voice that sounded childish and sulky and sorry for myself, I am distressed. No stress on any of those words.

He wasn’t incorrect in his observation and I wasn’t incorrect in my agreement. But as I sat there crying, it felt less correct.

He asked me why I felt like I had to disclose my situation to everyone, if I could just choose not to. Why tell everyone? he asked. It isn’t necessary for them to know.

But it is necessary, or it is for me. I felt myself getting defensive when I tried to explain myself to him. The problem (in my eyes) is that we were focusing the discussion on why I need to talk about the cancer. But it’s not just the cancer. I talk about everything. Sometimes I feel like I open my mouth and it’s like I’ve dropped a spool of ribbon down a steep and long hill. Words keep unraveling from my mouth and getting tangled and knotted and I have little control or maybe it’s care about where the ribbon ends up. It’ll run out eventually, and then it will stop. I don’t feel like I have to disclose. I just disclose.

And maybe I’m distressed. But I’m not distressed in the same way all the time. When I found out about this most recent recurrence, I was distressed. Distraught, overwrought, beside myself. But with the assistance of about half the drugs listed above, the volume on that was turned down. There’s less feedback and distortion. If I am distressed, it is about the same things lots of other people are distressed about. How do I live in the world without feeling like I’m wearing a mask I don’t know well enough to tear off? How do I communicate and connect when words are so often inadequate? How do I present myself in a way that feels most like myself when so much of myself feels alien?

Of course I’m distressed. Most of us are.


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.
This entry was posted in psychosocial oncology, this is me and tagged , , . Bookmark the permalink.

6 Responses to Appropriate

  1. Oh Alicia. I adore and admire you — everything BUT pity you — and I am so thankful you DO tell. Please never stop. Please.

    Maybe it’s selfish to say it but you help me more than you know. I bet I’m not the only one.

    • Alicia says:

      I couldn’t stop if I wanted to. I’m a washed-out dam.
      And thank you. I feel really humbled. It’s never really occurred to me my rambling might be of any use to anyone but myself. I am mightily honoured that you would say that. (And I adore and admire you, too! We’re going to meet some time in Real Life, I guarantee it.)

  2. Heather C. says:

    I’ve had plenty of experiences where self-disclosure has been really, really helpful – to both the discloser and the disclosee. And I’ve been on both sides of it. I believe that sharing, and witnessing, and knowing that we are not alone in our feelings, is crucial.

    Some witnesses are better than others, some disclosures are better timed and/or worded than others, and sometimes the damn thing doesn’t work the way you wanted it to. But telling people that I am on anti-depressants, that i am queer, that I’m breaking up with someone or being broken up with, that I’ve just been fired, whatever – telling people those things has helped me to connect with them and to be more myself.

    I also think about the things that I don’t disclose, and/or the people to whom I don’t disclose, and the reasons for that, and generally those are people and situations in which I don’t feel very safe or comfortable.

    Pity is such a strange word. I never pity someone who is ill or dying or bereaved, but I feel sad for them. I feel sad for whatever ways that impinges upon my relationship with them. Which feels different than pity, somehow. I’m sad that you have to go through chemo and feeling shitty. I’m sad that cancer exists. I’m sad for the barriers that put up around what is appropriate for us to talk about, but I’m also glad for boundaries being clearly stated and respected.

    Now I’m just yammering on, but I wanted to let you know that I resonated to so much in this post, and I am so thankful that you are writing this blog.

  3. Nancy says:

    I cannot even begin to imagine, on any real level, what it must feel like to be you. But your words paint such a vivid picture that I can see your feelings.

  4. Pingback: Words matter (Part 2) | Second Verse

  5. Andrea says:

    I can really relate to the spool of ribbon. I have pictured mine as a spool of thread and i am holding the end and have dropped it and as i chase it the unravelling continues.

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