[cancer|writing] And inexorably, ever more is stolen from me

I spent much of yesterday being angry and depressed. A whole host of frustrations are simply my daily lot here in cancerland, but this week’s been a bit extra cruel.

A couple of days ago, I posted about hitting the wall [ jlake.com | LiveJournal ]. That’s a transition point I’ve been expecting for a while, and in fact I got some extra time that I didn’t expect, to be productive on Little Dog and some other, smaller projects.

Still, hitting the wall means Sunspin is definitely sidelined until early 2012. This in turn has implications for when I can go to market, when the book might be contracted, whether I’ll have a trade book out in 2013 (2012 will see Kalimpura in print), whether I’ll have the money for an active con schedule in 2012 (probably not). In other words, I will stumble over a whole basket of career and financial consequences for not being able to get the book trimmed up and out the door this fall as originally planned. That’s been in the wind for a while, so it’s not exactly a shock, but I’m definitely disappointed, frustrated and daunted.

Then yesterday Viable Paradise and I came to a regretful parting of the ways. The workshop needs to confirm instructor availability about ten months in advance, for planning purposes. There’s at least even odds I’ll be in treatment again next year. Given my four month scan-and-hold cycle, even if I end this chemo cycle clear, I can’t firmly commit anything to anyone more than four months out. So having missed being an instructor this year due to this metastasis, I’m now out for the indefinite future. Even if I stay clean for the time being, it will be five years before I can commit to long range plans without the ever-present caveat about me possibly going back into treatment.

I am bitterly disappointed about this. Not at the VP folks, they need to run the workshop with some stability, and I’m completely on board with their reasoning. But I am disappointed with myself. Just as cancer has stolen so much from me emotionally and socially, just as cancer has stolen almost half my writing time these past two years, just as cancer has stolen my Sunspin deadlines, now cancer has stolen an instructing gig I was very excited about and highly committed to. Maybe in five years I can try again if I’m still alive, but I wanted to do it now, at this time in my life, at this point in my career.

I’ve realized that my most basic problem is that I still think of myself as a healthy person. My self-image is that of someone whose life permits him to make long-range plans and keep commitments. That hasn’t been true for over three and a half years now, but I have not internalized myself as the sick man that I very demonstrably am. That the world keeps forcefully reminding me I am by stripping me of opportunities.

In it’s way, that’s an odd form of privilege. The fact that I can even hold the illusion of being normal and healthy is a function of the way cancer works. If I had any number of other major diseases, I wouldn’t have the hope of respite to keep touching back on.

On top of that (or perhaps underneath), I’ve really lost my optimism this year. I made it through the first two cancers convinced everything was going to turn out fine. I don’t believe that any more. Not down in my bones. These days I’m pretty sure I’m going to die of this in the next few years. The things I aspire to, the things I’ve worked hard for, the things I’ve wanted to do — they’re being taken away, piece by piece.

Cancer is a fucking thief. It starts and ends with stealing the heart out of me. Along the way it steals my love life, my writing career, my daughter’s childhood and everything else it can get its bloody hands on.

Take care of yourselves. Do the preventative things you can do for your lifestyle, your genetic history, your age cohort. Trust me, you never want to go down this road.

5 thoughts on “[cancer|writing] And inexorably, ever more is stolen from me

  1. For decades now I’ve had a disease that’s eaten big pieces of my life. I passionately hate having a role in doing that to someone else, but I won’t pretend that it hurts as much as being on the receiving end, because nothing does.

  2. Jan says:

    God I hear you and can feel what you are saying Jay. Even though I have had 2 sessions of cancer, surgery did the trick. What did not was my Mum getting breast cancer. She ignored the signs and by the time it was found it was too late. I cared for her the last few years of her life.

    I remember talking to her about so much of what you are saying. The fear, being sick was wearing here down. But we came together in spirit of ‘don’t let the bastards get you’.

    Jay, please don’t let ‘the bastards get you’.

    Ever need a hug, message me. I will always be here.


  3. Harald Striepe says:

    I am Atheist, although perhaps believing in fantasy would have helped me in various places of my journey. But one tenet of the Buddhist philosophy I find very meaningful: The root of all suffering is that we want life to be different.

    I think that truly accepting death is likely the most liberating growth all of us can achieve, freeing us from the self focus preventing true empathy. I say likely because I am also not quite there yet. But death is certain, more certain than taxes. So not accepting it is silly, and I do not believe that fearing it is a requirement for wanting to live.

    Like you, I’ve had a troubling journey. I’ve only been to stage IIIA so far, but had a very bumpy year after surgery due to chemo complications. Next week is another milestone, bad or good. 2 1/2 years survival drops the probability of recurrence by an undetermined value, I estimate it from 30% to 20% 5 year mortality. You would not fly a plane with those odds. I think about it, but am not mortified. Once cancer has occurred, even in remission it becomes part of your daily mental milieux.

    Cancer is one of the most transformative experiences precisely because it gives you plenty of time. It passes you through horror unlike other experiences. Loss of control, violation and maiming of your body, pain, suffering, fear, mental retardation with full awareness, emotional depression, social isolation. All stretched over plenty of time, which dilates the worse it gets.

    The latter is interesting, because one somehow moves into a different world. I did not realize the absolute horror, fear, and concern my teenage kids felt because of me. And I was puzzled about my wife and companion, who felt angry at me for getting the disease. But I do understand them now. It was born from deep love, and knowledge of our interdependency. But I was isolated in the bubble, and live(d) in a different world.

    Then there were the feelings of anger, fear, resignation, determination. The clearest feelings for me were feeling helpless and afraid of death. But the scariest of all was coming to a moment, when I wished for death! I had not overcome my fear of death, I was simply so miserable and done with it all, I wanted it to be over! I still remember that precipice, in the middle of a Tuesday night in my isolation room in the cancer ward. Tubes were running in an out, I had the peculiar smell and taste all those drugs can give. I have never been more desperate and resigned.

    But despite the fog, I realized, where I was, and that I HAD to make a choice. I chose YES, and past that everything was clearer. Having a goal and actions defined (no matter how trivial) made a difference. I reached my goal, and stumbled out of hospital refusing a wheel chair that Friday. The journey was far from over, but it had become very different.

    I have moved closer to acceptance of my mortality, but admitting one’s other weaknesses (I talk and lecture too much) is a lot easier. For me true acceptance has become an internal goal, because I am convinced, it will free me of all fear. It will allow me to experience this life more fully, to become more empathetic and accepting, to appreciate it all. Life is not about the time, but the density of experience, and growth! And most of all, it is about the feeling of love and connectedness to our world’s fabric.

    I did not intend to write so much about me, but at the same time cannot relate my thoughts to you in any other way. Experiences relate better than the dry conclusions. For me what mattered was not esoteric philosophy about life, but the vicarious experiences of others that were authentic.

    The most profound experience prior to cancer that truly prepared me for the journey was my 16 year old daughter preparing and playing Vivian in Wit, the story of the cancer journey to death and liberation of a 50 year old professor of John Dunne, who learns that a touch of human kindness is worth more than all the wit in the world. Mike Nichols (HBO) did a fairly close movie version (that went a little easier on the medical community than the play) with Emma Thompson.

    The other is my work with HeartMath, which teaches you to learn take control of your Heart Rhythms (Heart Rate Variability -HRV- Patterns) via training. I design the emWave HRV feedback devices that help. You can achieve a state of psycho-physiological coherence that synchronizes systemic functions, and prevent your brain from moving into decoherence/cortical inhibition. The latter is the feeling of panic, anger, despair. You can easily measure the impact of the states through blood and standardized performance tests related to your ECG. After a bit of training, you can recall this state in a moment, and you also change you habituation over time. I remember rolling into the surgery for my colectomy, and thinking – “now we will see, whether this stuff really works!” It helped tremendously to the point that the oncologist was joking about my coolness every time he saw me!

    Where am I going with all of this?
    – Fear of death: we will not be free to enjoy and profit from life to the fullest – no matter how much we have – until we move beyond that fear. It is a mind worm. I see cancer as a transformative experience that can help this. None of us know, how long we have. But we do know, it is certain.
    – There is a stage worse than fear of death, which is wanting it! This is not acceptance, but want. I think that is even more blind in the end. For most of us, the worst moments do pass, we can look beyond it, and defining action to move beyond it helps us do better.
    – In the deepest hell, and in general, I found Quick Coherence developed by Doc Childre to be the most useful to allow me to move beyond it. It has similarity with heart/breath meditation in Buddhism, but can be practiced at any time:
    1. Heart Focus: quiet you attention and focus on the area of your heart.
    2. Heart Breathing: breathe deeply and slowly through your heart, exhaling through your solar plexus. If your mind wanders, pull it back to just feeling the breath. Continue, until you feel a comfortable pattern doing this.
    3. Heart Feeling: as you maintain the heart focus and breathing, activate a positive feeling by remembering something you love or cherish, bathe in that feeling, and maintain the state. I tend to remember the moment of birth of my children.

    This is what I used to pull me back from my death wish, and what let me to start thinking again.

    I truly hope that things get a little easier for you. Just like Steve Jobs, there is a lot left to do for you that all of us would like. And life is mostly fun!

    Despite the opportunity for life change, we’ve all had enough of it. Cancer sucks…

    — Harald

    1. Jay says:

      Harald –

      For what it’s worth, at the moment I’m not particularly afraid of death. Not that I won’t rediscover that fear if it comes to me, but death has become something of an old if unwelcome friend. It’s the loss of the richness of my life I fear and hate. The spiral of limitation. I’m also pretty clear that right now, 80% of the way through my second chemo course, I am experiencing what could charitably be called hard-of-thinking-hood. Your ‘retardation with full awareness’. Which impairs my emotions every bit as much as it impairs my thoughts.


  4. Harald Striepe says:

    A relief that you are not rattling at the thought of the grim reaper… Fear is a terrible thing to feel.

    I remember that overall dullness. I was surprised at recalling the total state world, while methodically wiping the kitchen counter prior to preparing some snack some 14 months after my last chemo day.

    It is a ritual I got into while fearing infection due to neutropenia (and all that wonderful GCI stuff), yet having to eat regularly and on time.

    I was amazed at suddenly being swept by a complete memory of the chemo state, after recovering and forgetting quickly. Man, felt sooo good to feel normal!

    There is no dualism.
    It will pass.

    Good for that! Anyway, I think of you at least once a day due to a strange kinship.

    The odd thing is that although I have been reading Science Fiction voraciously since my youth, and probably share the same idols (Chip Delany at the top starting with Dhalgren), I have never read any of your books.

    I finally added some on my Kindle today…

    BTW, the new basic Kindle 3 is nice for reading, since it is so light, and has great contrast. I also use iPad and iPhone, but the iPad gets heavy, and the iPhone is small. And yes, my eyes went to hell during chemo. Mostly recovered, the rest might be just decrepitude of aging.

    – Harald

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