[cancer] Learning to live with limitations, and why I talk about it so much

Much of this cancer game is about learning to live with limitations. I realize that for some people that is a lifelong process, but this is a new issue for me. I retain ambitions that it might not be permanent. As says in her post on living with pain and adversity, Jay has hope that he’ll get through chemo and life will return to some semblance of normal, even though there will be huge changes for him. Nonetheless, here I am today, and here I will be through at least July.

My immediate issues right now are surgical recovery. By and large, they improve almost day to day, though sometimes I do play the two steps forward, one step back game. Our trip to Seattle last weekend set me back a bit, frankly. But this whole issue of resource management, “spoon theory“, will apply just as strongly during chemo, which I am starting in two and half weeks. So for the sake of my own sanity I am viewing the surgical recovery process as contiguous with the chemo experience. You might call it Session Zero.

One of the hardest elements of this for me to manage is my sleep needs. In the days after the partial thoracectomy, I was sleeping as much as twelve hours per day. Much of that was drug-induced, but that’s also what the body does with trauma — it shuts down so that resources can be spent on healing. These days I’m down to about seven and half or eight hours per night, plus one to two naps per day, plus a fair amount of laying about quietly in the name of spoon management.

And it’s driving me nuts.

I’m used to sleeping six hours a night, waking completely rested and energetic, and charging into my day. Let me tell you, I can get a lot done in eighteen productive waking hours per day. Day jobbery. Writing. Parenting. Household chores. Pleasure reading. I’m down to about fourteen or fifteen waking hours right now, and losing about two or three of those to spoon management. It’s like losing a freaking hand or something, in terms of impairing my productivity.

And this is what I have to learn to live with. For slightly different reasons, chemotherapy will have much the same effect on me. I don’t know the severity, or the cycle yet, but it will quite likely be something like this. I am learning to live with the limitations. A lot things just don’t happen the same way around here any more. Housecleaning, laundry, garbage removal. I still haven’t rehung the smoke alarm from last week’s garlic bread incident. (It’s live, just sitting on the kitchen counter instead of hanging over the doorway.) The Genre car needs to go back to the mechanic, has for weeks, simply hasn’t happened.

What I have guarded jealously is my writing time — an hour a day — and my exercise time — 30 minutes to an hour a day. I must keep my purpose going. That is who I am.

As to why I write about this stuff in such detail, even the difficult and weird stuff, like depression and sex; I suppose there’s three reasons.

One, I am an external processor. I babble my way through my troubles anyway. In most of my life, that amounts to a lunchtime chat with or time with . Most issues don’t need a continuous, public airing. The journey of cancer, and its seemingly endless ramifications, has utterly taken over my life. So my need for external processing has amped up. I am a writer, so I write. I would write about it even if you weren’t reading. This could be called the “selfish attention whore” modality.

Two, documentation. This is a hell of a journey. Millions of people make it every year. And almost no one talks about it. So again, I am a writer, I write. For some of you, this is research and reference for your own work. For others, it’s a reflection of life experience in your own circle of friends and family. For others, it might simply be a look into a difficult place. But by documenting this, I expose mysteries and secrets and horrors and shames. That eases my burden, and it (hopefully) increases understanding. Consider this the “peer learning” modality.

Third, because too many people are wrapped in silence, and my words help them. I didn’t know this when I started cancer blogging, and I rarely mention it as I go along, but I get emails, comments, letters; some weeks almost daily. People write and say, “Now I know what my father was going through, though he would never talk about it.” Or, “I have two years to live, and you’ve helped me explain things to my family.” Or, “We went through this with our son, and it really helps me to hear how you’ve handled it.” I get emails that break my heart. I get emails that lift my heart. But it’s become almost the most important reason for me to keep being so clear, so honest, so out there on this. Because cancer and its discontents are largely silent diseases, at least in terms of the individual experience, and I can loan my voice a while to those who have not yet found their own words. Consider this the “speaking to cancer” modality.

If you’re still reading, what does all this say to you? How do you read my cancer journey? I admit to unseemly curiosity.

6 thoughts on “[cancer] Learning to live with limitations, and why I talk about it so much

  1. Laura says:

    I found your reference to the spoons interesting. Where did you hear of it. I myself have spread it far and wide since it applies to anyone who is chronically ill or even temporaily forced to slow down and regroup in order to heal such as yourself, not just those with Lupus which the author of the Spoon Theory suffers from.

    I myself have numerous chronic illnesses that have slowed me down, still I do everything I can to build up with exercise and to eat as well as I can afford too.

    Eat well, don’t deny yourself the rest you need and take lots of Vitamin D throughout your healing.

    1. Jay says:

      I learned about spoons from the blogs of some folks in the MS community, actually. It’s a helpful metaphor.

  2. K.C. Ball says:

    Jay:

    I began following your blog some months ago because I am a writer, too. But I have been reading your cancer posts with much interest because of what your insights say to me as a person.

    I haven’t had to face what you are facing but I do understand some part of it. I’m sixty-three, have had two heart attacks and I’m managing my own set of spoons.

    I can’t run up a flight of stairs the way I used to, not without considering the potential price, and even walking Seattle’s hills takes my breath away. It’s frightening, too, when my heart begins to stutter for no apparent reason and will not settle.

    We all live inside our own heads and it seems to me that we read (and write and talk) to share some part of who we are, so that we are not so much alone.

    So keep up the good words.

    I hope that talking about the process improves your personal well-being. But beyond that, you are doing so much good for so many people. Myself included.

    And I am praying for your full recovery.

    K.C.

  3. Jeff Ford says:

    Jay: Got the Book of Dreams sheets. Thanks. I’m sure that was just what you needed. Hope you and yours have a great holiday. May 2010 find you feeling better and back somewhere close to your old energy level, which, even diminished, probably exceeds that of most human beings.

  4. Cora says:

    I don’t remember how I came across your blog, probably by following a link from somewhere else. I stayed, because I liked your writing process posts and also the link salads and photos.

    There have been a couple of cancer cases in my extended family as well as among friends and acquaintances. What is more, I lost a grandmother to cancer. I never knew her, because she died before I was born, but there is a chance she passed on a genetic predisposition for breast cancer to me.

    I think you’re brave for writing so openly about your cancer experiences. There is very much a taboo surrounding illness – any kind of serious illness – in our society where it’s considered impolite to both discuss illness and ask about it. It’s great that you’re willing to ignore that taboo and talk about your experiences, including stuff like the sex issue that is never mentioned anywhere.

    I’m keeping my fingers crossed that you’ll get through chemo okay and that we can look forward to many Jay Lake novels and stories to come.

  5. Sydney Duncan says:

    Jay, I read because I know you, although not well, and because I am an information gatherer by nature. You are writing well and clearly about issues that arise in all families. Thanks. Keep blogging as long as it helps you — and know that it sure helps those of us reading you.

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