Tuesday, May 14, 2013

On being seen as "dead soon"

I seem to have a different projection for myself in terms of how long I might live. Sure, I have cancer in a variety of shapes and sizes - from a few centimeters down to a few millimeters and no doubt more that's too small to detect - in my lungs, brain, liver, spine, sacrum, and hip bones, spleen, and adrenal glands. This is what the mechanical eyes that see into my body project onto the television. It's all on paper, on screens.

My daily experience is completely different from this, quite the opposite actually. I am dealing with drugs and treatment side effects. But in spite of that, or no doubt sometimes because of it, and perhaps because of the excellent conditions I find myself in, I am positively burning with life. I think I may have another year or two in me yet, because of my "high performance status" in the words of Dr. Patel, or more subjectively because I have no cancer symptoms. The degree to which I do feel sick is due to treatment, not disease.

It's also true that more than a year or two out, I have no future thoughts of myself stored in the "largely unconscious projections about the future" section of my brain, which used to have a lot more content. But for now, I do not feel, physically, like I am dying. I manage side effects, but do not feel sick. I know that I will. It is not clear to me now that that will be soon.

Side effects update

On the plane back from Orange County I wasn't able to do an "easy" sudoku. It seemed really difficult. Then I started a "moderate" one and got more numbers, but many ended up being wrong. There could be other reasons for this, like lack of sleep, but it makes me nervous.

I have very itchy ear canals and throat, maybe from allergies or radiation, or both, a sunburned forehead, heartburn from the alz. drug (.05% chance of that happening), and somewhat painful urination (could be fibrosis from previous radiation.) I sleep hours less per night than usual, and wake up every hour or two, even when I take Ambien, which I used to think was strong. And my hair is starting to fall out.

Today is the last day of radiation, after which I will start tapering off steroids and get very tired. I will meet with the nurse afterwards and hear her suggestions. 


  1. I really appreciated these first three paragraphs, as well as the title. There's often, I think, a lot of contrast between our daily ongoing subjective experience and the more distant, 'objective', data-driven analysis. It seems to me you have the two in a proper balance. I do not think of you as 'Dead Soon', either. Maybe it's the discrepancy between what you look and act like (someone dealing with treatments and their side effects) and the expectations I've been conditioned to have around the lab/scan findings. It's so good to get reminded of the difference because it's helpful to maintaining a closer acquaintance with Reality and sanity. So thank you for the wonderful clarity you share with us!

    Hooray for the last day of zapping! I'm in awe that you can even DO suduko! I'm totally lame at it, no matter how easy. Every time I think of you I fell great love----XOXO

    1. Oh, bah! Seems I'm sometimes shockingly lame at proofreading, too! It's "feel", though I also fall all too often! :)

  2. What an interesting paradox you are in. And fascinating to hear your reflections on it. The most beautiful thing you said is how you are "burning with life". It just reminds me how important the present moment is. No matter what happens in the future to any of us (and we will ALL be dead relatively soon in the grand scheme), we are alive now. You are alive NOW. That is the only thing that is known, that is true, that is real.
    Here's hoping your discomfort eases up and you can enjoy being alive more.