[writing|cancer] Plowing ahead with books and chemo

Yesterday my oncologist informed me that I had lost all my nose hairs. Full nasal Brazilian, that’s me. Which explains the odd booger-to-finger ratio lately, as I commented on my Twitter and Facebook feeds. And the perpetually runny nose. It’s like being three years old again. I shall attempt to maintain nasal dignity at tonight’s Powell’s reading and signing for the release of Endurancejlake.com | LiveJournal ]. Do come if you’re in the PDX area. Given that I actually slept well last night, I might even be lively!

The postponed chemo ten of twelve starts tomorrow. I passed my blood tests yesterday, and we discussed whether my ongoing head cold was of concern. So long as I don’t run a fever or slide back into GI terror, they’re going to plug and run me.

Meanwhile, plans are stirring for the spring. I expect to have the first volume of Sunspin, Calamity of So Long a Life, revised and back to my agent by the beginning of March so it can finally go to market. I have a few travel itineraries coming together. Look for me at RadCon, unless I’m feeling desperately broke in February, with other appearances to be announced.

I don’t have my writing brain or my normal life back yet, but I can see them from here. Tonight’s reading and signing will be a nice reminder.

6 thoughts on “[writing|cancer] Plowing ahead with books and chemo

  1. Jay,

    I’m also a novelist who’s been battling Stave IV cancer (metastatic carcinoid) since May 2006.

    I believe all the chemo and other varying chemical cocktails that’s been either pumped through my arteries or stuck in me as an intramuscular shot has given me what’s known as ‘chemo brain,’ (see http://en.wikipedia.org/wiki/Chemo_brain) something the doctors refuse to admit exists, but I believe does.

    Every day, I find it more difficult to find the words to finish my writing projects because of it and the oncologist laughs at my questions about it.

    I certainly hope you don’t find yourself worrying about this… or suffering from it.

    1. Jay says:

      Trust me, I am intimately familiar with chemo brain and how it stops me dead in my tracks with my writing. I’m on my second metastasis, and second round of chemo right now, and my experience on a six month chemo course is I lose all ability to write for the last 2.5 months and the initial trailing month. Not to mention a host of mild to moderate cognitive impairments including short and long term memory loss, innumeracy, attention span issues and so forth. How much of these are direct drug effects and how much are aspects of the intense chemo fatigue is an open question, but chemo brain is a huge part of my life. And in my case, my oncologists acknowledge it and are supportive of my concerns. Unfortunately, there’s damn all anyone can do about it. Even diddling the doses of my helper drugs doesn’t do much, given how much of the chemo brain is driven by the primary cocktail.

      1. gyanavani says:

        Hi Jay,
        Years ago, (2002/Seattle) you critiqued a story of mine. Since then I have moved to India adopted a daughter (I had a son at that time)taken care of various extended family members and through it all struggle to write.

        This is not about me the writer. This is about me the psoriasis sufferer.

        When you met me 90% of my body was marked by psoriasis. Basically I never saw a clear piece of skin. And the care it required was draining. I lost a whole decade of my life. I was also severely depressed.

        I was willing to go through with all that. What I did not look forward to was well meaning questions from strangers I met in the mall or the grocery store. ( Admittedly these were better than those others who surreptitiously pulled away their children from me.) None of them understood the problem was not simply skin deep so I would make up all kinds of stories that would be dramatic enough to satisfy them.

        When I read your blog I was truly saddened to hear that you are fighting cancer. I was reminded of my own lonely struggle. There were people all around me but no one truly understood what it felt like to deny yourself new clothes because you didn’t want them blood stained.

        I don’t want to irritate you with well-meaning questions. But I do think that cliche is true that just when we think we can’t bear it any more we find a new source of strength. In my case it was my son. I faced each day for him. Even now I call him my knight in shining armor.

        I too am in remission. And every time my father goes to the hospital or my son sinks into depression and talks of death being beautiful and satisfying spots appear.

        I sincerely hope that a few years from now you too will be writing such a mail looking back on pain analytically.


  2. Jaws says:

    Have you considered wearing tasteful Hawaiian-print noseplugs for your readings to keep the runniness under control? <vbeg>

  3. Lisa Harrigan says:

    Noseplugs, EWE.
    But some large Hawaiian Print Hankies to mop up the drips, now That would be Classy. 😉

  4. Harald Striepe says:

    Chemo brain has recently been scientifically validated by a Hutchinson Center study led by Dr. Karen Syrjala. It is not any longer a figment of patient imagination. Most of it passes, but there are measurable deficits for more than 5 years in some cases.

    In my case, I actively practice to overcome some of the issues. If I do not remember something, I will work in my mind to recover it, etc. I believe, this helps to recover damaged connections and pathways.

    Apart from the ravages of old age in this regard, I feel ok almost two years later. Thanksgiving is my 2nd anniversary of the cessation of chemo.

    Good luck on the next cycle, Jay!

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