Journal

Journal entry by Erik Olin Wright

I have roughly three weeks left of existence. Three weeks. Let's call that January, 2019. January 2019: my month, my last month. There can be surprises -- both ways of course. My liver is the main source of leukemia's havoc. It is greatly enlarged now, filled with AML. This is why I need transfusions of platelets and red blood cells every day. The graft did not survive the return of AML so it produces no products, and the AML-clogged liver seems to be filtering out some of the transfusions so I am not getting full benefit from those. The result is that my platelets remain extremely low even after a platelet transfusion and my hemoglobin remains very low even after a hemoglobin transfusion. So, eventually these become too low to sustain life, or an opportunistic infection does me in. The doctors say "a few weeks" -- a nice surprise would be to slide into February; my birthday is February 9. We’ll see what happens.

This is all hard to take in fully. I am not in great turmoil over dying. I am sad about many things, desperately sad about those connected to my family. But I'm not afraid. I wrote about this early on; my feelings haven't changed: I am stardust that randomly ended up in this marvelous corner of the milky way where some stardust ended up in conditions where it became complexly organized in a way we term "alive." And then even more complexly— conscious stardust that is fully aware that it is conscious:   amazing -- stardust, inanimate products of exploding supernova, organized in such a complex way that it is conscious of its own aliveness and consciousness -- the greatest privilege in the whole, immense universe. It may be for a limited time -- this complex organization ends and the stardust that is me will dissipate back to the more ordinary state of matter. Nothing to do about that. As creative fanciful minds, we humans are good at inventing ways for our existence as conscious beings to continue after the stardust dissipates. It would be nice. I don't believe in that sort of thing, but I'll find out  by some time in February.

Journal entry by Erik Olin Wright

I can now give more definitive news about my medical situation. According to the latest indicators, I have three or four weeks left to live. There may be surprises of course, this happens. And I continue to make use of whatever chemo is left to fight the AML, but the fact of the matter is we have run out of options. And the doctors feel there are something like three or four weeks left.

This means I've shifted into a different mode of operation. I told the doctors that my priorities are unequivocally to maximize the amount of energy I have, to be able to write, and enjoy my family in these last days.  But I do plan to write if I have the energy to do so. I'm happy to have visitors. But I can't plan and coordinate them. So I'm telling people to just come by for a short visit, even if there's overlaps with other people.  I suppose the one nice thing about this dreadful news is that I can drop the food restrictions that are concerned with food borne illnesses.  We're thus having a sushi banquet tonight. If my taste buds don't cooperate, I'll kill them! 

Looking forward, I will continue the blog, but it will be a bit more intermittent, since I have other writing priorities that are more important.  In particular, the letter to my grandchildren. If any significant change in my condition occurs, of course I will do a blog post on that. 

Love, 
Erik

Journal entry by Erik Olin Wright

I am dictating this to Marcia because I am finding it extremely hard to write, extremely hard to keep my eyes open and therefore to write. The past two days, I have mostly spent in bed, sleeping. And I haven't had a chance to follow up with other doctors yet about the "six month stretch" comment in my previous blog post.  
I am feeling a bit more optimistic, as many people in your wonderful comments have reminded me of the difficulties of reasonable statistical estimates and the many experiences people have had of being told they had little time left and then living a long time after.  
So I will get back to the business of living and leave the business of dying to the doctors.

Journal entry by Erik Olin Wright

I decided that it was time for me to get a better sense of where I stood with respect to the likely course of the disease. Various hints over the past week indicated that things weren't going so well, but it was all vague-- we were focused on the debilitating immediate symptoms: dry mouth, fatigue, fevers. 
    So, today I had this conversation with the HemOnc doctor: "I know it is pretty remote that I will survive this. But what can I realistically expect? A few months? Six months? A year, maybe more than a year?"
   "Six months would be a stretch", he said.
There you have it, from the HemOnc doctor on the floor. I will gather other views so there may be more variation. But I don't imagine the basic picture will change much.

In the coming days I am going to try organize the practical tasks ahead: clear out my office library with different destinations for different books (eg.My books and translations should be kept together); filing cabinets; journals (nearly complete NLR); artwork of various sorts; a lot of posters that we haven't used in the Havens Center, etc.  
So, we have to find a destination for everything.  I don't want to make any money off all the books in my library; that is, I don't want to have a book sale.
There are also filing cobinets filled with data from my 1980 study somewhere in the bowels of the social science building.  All the original surveys.  Unless somebody is tempted to do a follow-up study 50 years later, these probably should be trashed.  
I'm listing these things just to alert my friends and colleagues that there is a lot of practical work to do.
I'm happy for many of the books to go to students who actually have libraries.  
Anyone who is interested in helping with this should let me know.  But we can figure out the practical logistics of all this later.  

Journal entry by Erik Olin Wright

I will dictate to Marcia relatively short medical updates, just so basic information gets to you in a timely manner. 

Here is a quick update:  this is a serious moment, struggling simultaneously on many fronts.  For the first time, the doctor suggests that the outcome of this crisis is uncertain.  Here are the issues:

1.  spleen; the spleen enlargement continues and if anything is a little worse;

2.  intestinal/colon infection with fever and constipation; constipation is aggravated by enlarged spleen inhibiting movement of intestine. 

3.  elevated sodium from trying to manage diabetes insipidus.

4.  trying to deal with all this by having a few days taking nothing by mouth and restricting oral fluids to rest the gut, as well as IV antibiotics. Unbearably dry mouth and interruption of chemo temporarily.

Goal is to make it through this very rough period and get all these symptoms under control.

Journal entry by Erik Olin Wright

Pure self-interest instantly flipped into pure altruism. Phooey.   When I woke up this morning the fist thing that came to mind was coffee. Strong, black, unadulterated coffee. I told Gay how Marcia makes good coffee here with our little drip machine. Gay dutifully did everything she was told to do, and poured herself a cup. "Just pour me a half a cup in the The World's Coolest Grand Pa cup," I said. The moment I said this, I realized I couldn't actually have any coffee because of the strict 'nothing by month order'. But where's the altruism now? The self-sacrifice? Giving up something so that someone else can flourish? Gay made the coffee; I hadn't exerted myself at all. Aroma. I now could smell the coffee but not drink it. So it goes.

Now for a quick update: feeling significantly better than yesterday, so in terms of feeling, moving in the right direction. Marcia will be back in half an hour. All of the numbers seem to be improving. So, maybe things are getting better.

Journal entry by Erik Olin Wright

My health situation has deteriorated over the past two days. It makes me feel that I had a pretty glib view of being miserable, and a nuanced way to talking about happiness and wellness before. Here's the situation: After a CT-scan of my abdomen yesterday, two things were discovered, (1) a mild splenic infarction, resulting in the death of some spleen tissue; 2) an infected part of my colon. The splenic infarction is like a heart attack, only in the spleen. Part of the spleen was enlarged to the point that it did not receive adequate blood and eventually dies. That is part of where the spleen pain comes from. The infection is more worrisome because it could lead to a rupture of the colon which in turn could lead to sepsis, one of the ways AML could kill me. 
    As a result I have been taken off all food and drink by mouth. I get hydrated intravenously, and so far only get nutrition in a minimal form. I just returned from intravenous radiology where I got an extra connector added to my PICC line through which a concoction that is more like "food" can be administered. At the moment I'm famished, not having as much as a glucerna or anything else for three days and constantly parched. When I wake up my lips are glued together and I have zero saliva a loosen tings up. I'm allowed to sip some water and swish it around, but told absolutely not to swallow anything. Apparently water in my bowels increases the risk of rupture.
  The overall result of this is tat I feel CRUMMY. That should be a dance set to the Bernstein's song "I Feel Pretty" from "West Side Story:"  "I feel pretty, oh so pretty" would become, "I feel crummy, oh so crummy."
     I have to stop now. There is much more to write, but I'm exhausted, really spent. Marcia is in Burlington, Vermont, where she has been helping her Dad get settled in a Hospice Residence. Cathy and Jeanette spent the night with me last night, which of course was not necessary but incredibly sweet, and Gay will take over from them now. So, good night.

Journal entry by Erik Olin Wright

Happiness: authentic versus artificial?
This is going to be a winding account of a particular moment of emotional volatility. This seems like the best way to write it, especially given my current fatigue level -- I keep falling asleep while writing, so I'm constantly stopping and starting, which makes this is a bit disjointed. 
      
There is a longstanding issue in philosophy around the concept of happiness that concerns the vulnerability of this idea to various forms of manipulation. In Marxism this is reflected in the critiques of "job satisfaction" in analyses of alienation: workers may say that they are satisfied with their jobs because the range of alternatives is so limited that what they have seems pretty good compared to the alternatives. Workers on a production line with the high division of labor ought to be unhappy. People are prone to adaptive preference formation -- the sour grapes story in Aesop's fables. And then there is the "happiness pill" problem: a pill could be slipped in the water supply that was completely undetectable and would make everyone feel profoundly happy, except when there were good, objective reasons to feel sad -- like with the death of a loved one. Would the world be a better place with a happiness pill in the water supply?
   I have engaged these issues a bit in my discussions of social justice. I have framed a just society as one in which "all people had equal access to the social and material means necessary to live a flourishing life." I didn't say "...necessary to be happy". Of course, being unhappy interferes with flourishing, so the practical significance may not matter so much: the social institutions which are conducive to access to the conditions for happiness will also be conducive to flourishing, but I felt that happiness was a more superficial cut into the problem. This is overlain with the problem of the  "happiness industry", the commercialization of easy ways to be happy, from recreational drugs to hyper-consumerism.
     A different angle: In talking with Janet about meditation, she recently suggested that I meditate on a feeling of wellness rather than on eliminating the sickness, more specifically, a feeling of wholeness and bodily contentment. So I've been doing this. And I've been writing in the blog about how thoroughly happy I am and how this is unaffected by how miserable I might be about the disease.
     On Friday night I woke up around midnight, and wrote Janet this email: "Dearest Janet, I drifted awake this evening with a full and profound feeling of wellness, I was sleeping deeply, peacefully. I didn't wake up abruptly, but slowly. No sense of discontinuity between me and the world -- really at one in the ways we've talked about. So sweet." 
    The next morning I was talking to Marcia about various things. I'm not sure what the trigger was, but I suddenly started crying. It seemed to me out of the blue -- tears and sobs without focus. To comfort me Marcia looked up the side effects of the dilaudid pain medication I'm taking. One side effect listed was dysphoria, a feeling of sadness and unhappiness. But also listed was euphoria, deep feelings of contentment. Medication that would eliminate the first of these (dysphoria) would be a good thing. I deeply believe that depression and other disruptions of our ability to enjoy the world are a real source of suffering and are often to a substantial extent neurochemical in their causes. They should be treated like other ailments that interfere with healthy functioning. No one should feel stigma for taking an artificial hormone spray to deal with diabetes insipidus; the same applies to various kinds of antidepressants. Fine. That is absolutely clear to me, but somehow when I heard that my feelings of profound and pervasive happiness and contentment were also potential side-effects of dilaudid, I felt threatened.
       I know this doesn't make sense -- I had been writing about my feelings of happiness long before I took any dilaudid, so at most the dilaudid intensified feelings already present. But I am not talking here about a rational assessment, but of what I experienced. I was proud of my resilience in the face of AML; I felt that the equilibrium I reached was a real achievement, not some pharmacological trick. It is one thing to say that the reduction of pain as such contributes to happiness since pain renders one unhappy; what was disturbing was hearing that some of my more profound contentment as such might be coming directly from the pain medication. This somehow made me feel cheated out of an authentic experience of those emotions.

A lemming named Bubber
For the past week or so, Marcia has been reading Alan Arkin's wonderful book, The Clearing, to me at night. The story revolves around a superb character, Bubber, who happens to be a lemming. He is terrified of being a lemming because of their reputation for jumping off cliffs, but he doesn't find simply becoming an unlemming a satisfactory alternative. This resonates with the real utopia theme of seeking a positive alternative that is not just a negation of something, but a full bore affirmation of positive values. I first read this book 30 years ago. It is gloriously funny, and a really terrific book to read out loud, but also I think, a deep rumination on meaning, A ten year old and a seventy year can both enjoy it. It surprises me that it is not seen as a classic piece of allegorical literature.
      Anyway, one of the themes of the book is that each of animals in the book is seeking their inner "lion". Only one of the critters believes she has found her lion, Marion the duck. She's not completely certain of this, but the other animals in the clearing are pretty sure this has happened. Lots of discussion of what this all means. Bubber is always confused, but this is mainly because the world is so consistently absurd.
    Well, last Friday Betseygail was visiting from Texas and while walking across an open field between our apartment on Glenview avenue and the hospital, she found a little toy lion (in the photo below). What a deliciously remarkable coincidence.

Journal entry by Erik Olin Wright

I decided to open this CaringBridge website to make it easier for people to get updates on my health status, but I still very much enjoy personal emails and letters rather than having all communications take the form of journal postings + comment threads. So don't hesitate to write to me directly at eowright@wisc.edu.  

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Erik’s Story

Site created on April 19, 2018

Erik is in treatment for acute myeloid leukemia. He is keeping this journal to share his musings on this experience as well as to update people on his condition.

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