THE CANCER DIARY

           
     This is more or less self-explanatory, written in real-time on my laptop, first at home, then from a hospital bed, and posted in real-time to a group email of friends and on Facebook, hence raw and repetative, but I believe, useful and honest in original form except for spelling check.
   I think AN AGNOSTIC'S PRAYER may be of free-standing interest itself independent of the personal story which finds me writing this, having created this blog, still recovering, but, not 100% cured and in for some more chemotherapy, so I will post that separately too.


           March 23

       I have been diagnosed with stomach cancer and told that it is presently inoperable due to involvement of a mesentery lymph node, and my only chance to even live out the year is to undergo prior chemotherapy of one kind or another to shrink the secondary in order to make the primary operable.
     I’m in the hands of Sloan-Kettering, which is supposed to be the best there is at least in the US, but I am dubious and skeptical about chemo, at least conventional chemo, which basically delivers toxins of one kind or another to fast growing cells--cancer, but also others, such as hair follicles, which is why your hair tends to fall out--hence the panoply of bad side effects. 
     And the paradox of it is, except for an anemia which I’ve successfully been treating with mega Iron and mega B-12, I have no real symptoms.  Can’t say I feel 100% all the time, but some days I do, and the rest maybe 80%.  So I have some difficult scientific and existential decisions to make, and any wisdom or knowledge would be appreciated.
      I learned of the situation yesterday, as y’all might imagine, slept badly, and what came to me was something that seemed totally obvious, namely what I called the “cryogenic needle.”  Real simple, but it is sort of rocket science.  Shorn of bells and whistles, it amounts to bringing the temperature of a needle down to cryogenic levels using liquid oxygen or liquid nitrogen and sticking it in a tumor to crystallize it.  Unlike cutting with a scalpel, zero chance of releasing cancer cell to metastasize, and when the tumor comes back up to room temperature, it’s long dead and perhaps even disintegrated.
     Dona, who long ago had the process, reminded me that something similar has long been done to remove pre-cancerous cells from the cervix.  And today I did a little more research and found out that something like it is already being done on some cancers as front-line treatment.
  So if anyone knows more about this, or where I just might go to try and get such treatment, do let me know.  Conventionally speaking, and I’m being treated by as good a conventional oncology program as there is, the prognosis is otherwise pretty dire.
   Unless, of course, someone out there has an even more brilliant idea.
       March 23

     Y’all forgive me for this forthright group email, but it’s not impersonal at all from my point of view, and I can’t think of any better way to deal with the situation.  Many of you on this list already know that I’ve been diagnosed with stomach cancer, many of you have lent me much welcome and touching psychological, spiritual, and practical support, and many of you have asked to be kept up to date.
      As y’all might imagine, telling this dire news to friends over and over again on a one-on-one basis is rather agonizing, and, however bizarre it may sound under the circumstances, actually boring.  Hence this mode...
     It it does not mean than I won’t communicate individually by email or phone, just that this bulletin from the trenches and whatever may follow will avoid my having to be repetitive, and of course any of you who want to be removed from this admittedly bummer update thing have only to ask, and I will fully understand.
    I have now been told that my stomach cancer is presently inoperable due to involvement of a mesentery lymph node, and my only chance to even live out the year is to undergo prior chemotherapy of one kind or another to shrink the secondary in order to make the primary operable.
    I’m in the hands of Sloan-Kettering, which is supposed to be the best there is at least in the US, but I am dubious and skeptical about chemo, at least conventional chemo, which basically delivers toxins of one kind or another to fast growing cells--cancer, but also others, such as hair follicules, which is why your hair tends to fall out--hence the panoply of bad side effects. 
   And the paradox of it is, except for an anemia which I’ve successfully been treating with mega Iron and mega B-12, I have no real symptoms.  Can’t say I feel 100% all the time, but some days I do, and the rest maybe 80%.  So I have some difficult scientific and existential decisions to make, and any wisdom or knowledge would be appreciated.
     I learned of the situation yesterday, as y’all might imagine, slept badly, and what came to me was something that seemed totally obvious, namely what I called the “cryogenic needle.”  Real simple, but it is sort of rocket science.  Shorn of bells and whistles, it amounts to bringing the temperature of a needle down to cryogenic levels using liquid oxygen or liquid nitrogen and sticking it in a tumor to crystallize it.  Unlike cutting with a scalpel, zero chance of releasing cancer cell to metastasize, and when the tumor comes back up to room temperature, it’s long dead and perhaps even disintegrated.
      Dona, who long ago had the process, reminded me that something similar has long been done to remove pre-cancerous cells from the cervix.  And today I did a little more research and found out that something like it is already being done on some cancers as front-line treatment.
     So if anyone knows more about this, or where I just might go to try and get such treatment, do let me know.  Conventionally speaking, and I’m being treated by as good a conventional oncology program as there is, the prognosis is otherwise pretty dire.
      Unless, of course, someone out there has an even more brilliant idea.
 

                                      March 25
   The update on my condition is that as of now, the primary stomach cancer is not now operable, due to spread to some lymph nodes.  I’m starting chemo on  Monday to try to reduce that, and if it works, a month or two from now at least, it may then be operable.  I am at least now convinced that I’m in the hands of the best there is, at least in the US, and the doctor, himself rather bald, says that with what’s being tried now at least, I’ll keep my hair.  So as an article of faith, I’ve just gotten a haircut.

                        March 31

      Had my first chemo infusions two days ago, plus pills, more traditional stuff plus an advanced monoclonal antibody therapy.  So far none of the dreaded side effects at all.  But a mysterious positive one--I’m physically stronger that I have been in months.  And I know this precisely because I’ve been doing hard hatha yoga for decades and know what relative shape I’m in every day. Plus I started hand weights again after years off, and since the chemo am able to do 25% more.  Maybe it has something to do with the things I’m taking on my own, which the doctor does not disapprove of.  Never heard of anything like this. Hope it lasts.

                       April 1
      I’ve been asked (by Greg Benford) just what it is I’m taking, scientific curiosity, or whatever, so:
     Two fairly traditional drugs, Xeloda and Oxaliplatin, which basically attack fast-growing cells, cancer or not, which is why the usually expected side effects, for instance, losing hair because the folicules are fast growing.
      Herceptin.  This is the cutting edge, a monoclonal antibody (“humanized mouse molecule”) that attacks only cancer cells, and only cancer cells with a certain gene, by stopping them from reproducing.  First approved for aggressive breast cancer (this form has the gene), now beginning to be used on gastric cancer, potentially for more general use.  But only about 25% of cancers have this gene, and I lucked into one that does.
      That’s the Sloan-Kettering cocktail.
      But what sold me on SK, and particularly on my oncologist, Dr. David Ilson, is that he had no objections, with minor adjustments that made sense, to also continuing my own witch doctor treatment:
    3000 mg Vit. C
     500 mg curcumin--derived from turmeric, which both Vedantic and traditional Chinese medicine have used as anti-cancer medicine for a millenium or two with different questionable theories, but its usefulness verified in some refereed western papers.
     2000 mg Arginine/Ornithine.  These are body (muscle)building amino acids, big dose, been taking it for a while before the diagnosis, in conjunction with my (mostly)daily 45 minutes or so of Hatha yoga and now with a hand weight regime.
    That’s how I can know that I’ve thusfar been getting stronger.  I count breaths with the asanas, and I’m now holding the strength ones longer and longer, and speedily upping the number of light weight lifting repetitions.
    So what I’m doing is complicated, and it’s hard, if not impossible to sort out the synergies.  But scientifically interesting to try.

                               April 8
     Well, it’s been a first week of chemo, then a first week of rest from it, the regime being one week on, one week off, and thusfar none of the feared and warned of nasty side effects.  This turned out to be not that much of a surprise to my doctor, who said that a lot of progress has been made in that regard.
    The strange thing is that my growing strength has continued to grow, and rapidly.  I’m now doing more strenuous yoga than ever before in my life, and after years of laying off, back to hand weights, and very rapid progress in terms of repetitions and increasing weight.  Is this the way it usually goes?  Any one of y’all into this weight stuff?
      Also a shift in perception of cancer as a condition.  Serious and life-threatening though it is, at least right now, it seems more like a chronic condition that has to be dealt with long-term, something like, say diabetes, or Dona’s own sciatica.  The doctor talks about months of chemo before, if it even works well enough to satisfy the surgeon, to make my condition operable.
      But manageable.  We’re already making plans to go to Paris the end of May for the launch there of OSAMA TGE GUN, and Los Angeles in July for Dona’s niece’s wedding, and maybe in the late fall, when the climate there is tolerable, New Orleans for necessary research for a novel.
  Oubla-di, oubla-da, and all that jazz....
            
      May 16--from the hospital
    After five weeks of chemotherapy with no ill effects, I got whacked about 10 days ago by an upper intestine blockage that has made it impossible to eat or even drink.  First attempt to clear it has failed, some procedure next week.  I’m on IV and suction, losing a lot of weight.  Dona, bless her mighty loving courage is camped out here with me.  I am not at death’s door, but the situation is serious, scary, and very unpleasant and unconfortable.
                     
                                                      May 16-from the hospital
                                  Report & thoughts from dire straights

    Well, after over a whole month of chemotherapy for my stomach cancer without any negative side effects, indeed getting stronger and stronger thanks to 45 minutes of Hatha Yoga and 20 minutes of hand weights daily, I got whacked by an intestinal blockage which had me unable to eat or drink without puking and has landed me in the Sloan Kettering hospital for the past week.  The first attempt to at least deal with this intermediary condition failed and they’ll be trying to do something else next week.

      Sloan Kettering has an apparently well-earned reputation as the best cancer hospital in the US, just as the US has the well-earned reputation as having the worst health care system in the developed world.  It’s an almost luxurious place, or would be if it weren’t a hospital.  But if I weren’t on Medicare, I would be entirely fucked, I couldn’t possibly afford it, and Obamacare would be no help.

     Until I ended up here, I was doing my own witchdoctory in addition to the chemotherapy--curcumin, certain vitamins, etc.  Now I can’t do it and am entirely in the hands of the hospital and the medical establishment, and there is a great feeling of powerlessness and frustration.

       This is compounded by the rigid and basically inhumane rules, protocols, and schedules of even this, the best of hospitals.  Unimportant vital signs measurements at 4 am. Various people barging in and out with paper to sign, this and that, without a by your leave.  No recognition that even a healthy person needs their eight hours of sleep.  They don’t call someone in my position a “patient” for nothing!  Patient is what you are forced to be.  The doctors, the nurses, and maybe half of the orderlies, are sympathetic human beings, but the system itself is not only programmed to be heartless but even indifferent to some counterproductive health consequences of its unfeeling bureaucratic bullshit.  The interruptions of sleep for example, having to wait 2 hours for some simple eye drops to be authorized by a doctor who never even saw me for another.
    I don’t know whether I will survive this hospital stay, or for how long afterward if I do--weeks, months, years--but this experience is certainly memento mori that will not allow me to ever forget that I am mortal, and so are you, and so is everyone.
        And whatever you do or do not believe, Christian, Jewish, Muslim, Buddhist, whatever, or even agnostic like me this is surely the genesis of all religion.

                             May 18--from the hospital
          Dire straights have gotten more existentially dire.  I have not been able to eat or drink for over a week now, on saline & glucose IV and vacuum tube down my nose and into my stomach. If nothing is done, this is slow death by starvation.
    So Thursday I will have an operation.  The surgeon, Dr. Daniel Coit, is top drawer, and unlike some of the lower orders here at Sloan Kettering, a man of honest truth and gentle compassion. There’s a Plan A and a Plan B. 
    Plan A is to remove part of the stomach above the blocking tumor, and part of  the small intestine below, and hook them up, in which case I will be able to eat and drink and get my shrinking ass out of here.  On plumbing level, this would be a no brainer, but there may or may not blockages further down, and rather to my surprise, I was told that that none of the advanced scanners can tell.  So the surgeon says he won’t know if he can execute plan A until he opens me up, and gives me a 60-40 chance.
          Plan B, if that doesn’t work, is a feeding tube and an exhaust tube.  I could hang around slowly deteriorating that way, but it wouldn’t be much of a life.
      So it’s scary on that level, and made worse by my existential dread of general anesthesia, of being made unconscious not know if I would wake up.  So I don’t know if I’ll be around for a Friday update, or whether this will turn out to be hail and farewell.
                                                      May 18--from the hospital

                           DOCTORS, HOSPITALS, CANCER, AND  EXISTENTIAL  REALITY     
     I’ve been getting a lot of hospital horror stories since I barely alluded to mine, and been told any number of times that I was doing a public service.  So, some balanced thought....
     Sloan Kettering is acknowledged as the best cancer hospital in the US if not the world, and I can’t deny that on a scientific level, and it’s very well endowed because it’s the cancer hospital of choice for the world’s elite patients.
     But it is also a huge establishment run, as most such operations are, according to rigid, often counterproductive rules and protocols which are cold, unfeeling, unspirited, and turn much of the lower staff levels into acting like inhuman robots--this is the schedule, this is my routine, and if you don’t like it, tough shit.  So they wake you at 4 am to administer unimportant tests, depriving you of sleep, likewise with room cleaning, housekeeping, etc.
    There is a so-called “Patient’s Representative,” who here in SK is really the bureaucracy’s representative, an ice-cold, slick as goose-grease bitch whose really job is to stone-wall patients by quoting arbitrary rules to keep complainants from any administration pooh-bahs with the power to fix anything.
     This is a national disgrace, it wouldn’t be that hard to fix if there was a will, a heart, and a public demand to do it.  All it would really take is to rewrite hospital rules and protocols based on the prime directive, that the patient’s physical, health, emotional, and spiritual well being, or as much of it as can possibly be maintained, comes first, not the convenience or arbitrary rules of the administrative ass-covering bureaucracy.
     That much being said, something both more positive and not so positive must be said about the doctors, nurses, and researchers working in the field of cancer treatment.  The cold equations are that in terms of actually curing cancer, they succeed less than half the time.  So in order to stay sane in careers where failure is really more prevalent than true success, they redefine “success” in terms of additional months of patient life.
     I can see how they must do this, they really are heroic, but I can also see why tons of money have been wasted in the so-called “war on cancer” in terms of research and why there is so much mealy-mouthing and obfuscation when confronting human beings in dire straights.
                                                  

                                       AN AGNOSTIC’S PRAYER
                                               by Norman Spinrad

              agnostic (common definition): someone who neither believes nor disbelieves in God
              gnosis:literally knowledge
              gnosis mystical and philosophical definition: direct experience of the transcendent
              gnostic: one who believes that faith or the acquisition thereof must be based on such
                direct interior gnosis rather than dogma or scripture.

   As I write this I’m sitting in a hospital bed with stomach cancer after a serious setback, and because of who I am, all I’ve written for four decades, and my connection to extensive networks of good and caring people all over the world, I know, because they have told me, that many people, some believing Christians, Jews, maybe Muslims, are praying for me to the versions of God in which they have the sort of faith that I do not, some like me, agnostics, but giving it a try.

I am encouraged and deeply touched by all these prayers, and I somehow feel guilty for not being able to join them with prayers of my own, for obviously I would like nothing better than for my prayer and theirs to reach the ears of a benevolent, loving, omnipotent God who will then rescue me from this grave disease.

But I’m a gnostic, I suppose, I only believe in what I know or experience.  I have had what I do consider transcendent experiences, and indeed over 4 decades ago one of them did save my life.  But when it comes to such direct experience of the grace of Jesus, Jehovah, or Allah, I remain agnostic, having never been touched by such a thing.

And so, an Agnostic’s Prayer, 100% in public domain, do with it what thou wilt:

Dear God, Jesus, Jehovah, Allah, or similar caring, loving, transcendent being by whatever other name, I don’t know if you’re out there, but if you are give me a sign, touch my soul, fill me with your grace, and thereby prove to me that you exist.

By whatever means you choose, by whatever means necessary.  That’s not really very much to ask from such a God.  I ask for that now, and for my personal salvation afterward, only when and if I know in my heart and soul that I’m not whistling Dixie and praying a Hail Mary into nothing but the void.

All believers in you wrestle with the problem of evil and injustice rampant in a world supposedly created by a deity who is omniscient, omnipotent, loving, and just, a glaring paradox which can neither be denied nor explained by any scripture or logic.  To worship such a god blindly, a god who is the moral inferior of his human creations, is to simply bow the knee to superior power.

Of course those who do not believe in such a god have no such  problem, not believing that any natural morality, goodness, or for that matter evil, is inherent in the structure of the universe.

So God, Jesus, Jehovah, Allah, or whatever caring, loving, transcendent being by whatever other name who may be out there hearing this prayer, give me a sign.  I’m not praying for a burning bush or a physical manifestation of any kind, just the grace of gnosis of your existence in my soul and in my heart.

And then I will pray to you for my salvation as so many believers already are.  And then I will, like them, pray for the salvation of others in dire straights, and for the salvation of the world.

Over to you, Big Boy. If you’re out there, show me your face.

                  May 27--from the hospital
                                             GOING HOME
   I'm still in the hospital, will go home Monday or Tuesday. The operation went very well, maybe curative, but I've got a lot of recovering to do even at home, visiting nurse, nightly feeding tube to supplement what I eat, having lost a lot of weight. Gonna take a month or so, and then really getting aback into shape. Just dawning on me how close I was to buying the farm, if the operation hadn't work, it would probably have been terminal hospital on the feeding tube slowly starving to death.
This I will remember when the recovery process gets too depressing. And I will remember all the love, support, prayers, and energy sent my way by so many people by various means.
And maybe being open about this and writing about it in real time will pay some of it forward and help and encourage other people finding themselves in the same boat.
But I don't plan to make this the centerpiece of the rest of my writing career, and/or, become some kind of guru of some kind of cancer fandom.