Journal

Journal entry by Erik Olin Wright

I'm bit ragged around the edges as we are trying to get so many "numbers" and conditions into their proper place. I'll update you on these things here and then, tomorrow talk about some interesting (for me anyway) new thoughts about various aspects of my treatment and Life at Froedtert.
     Sodium. My diabetes insipidus continues to mess with my sodium levels and we keep oscillating between different strategies to deal with this. Yesterday I went 36 hours without a dose of desmopressin and ended up peeing 40 times in an 18 hour span with a constant terribly dry mouth and unquenchable thirst. But of course nearly every medicine I am taking lists "dry mouth" as a possible side effect. My sodium had been as low as 129 and then had risen to 135, the edge of the normal range. 
     Pooping. Dealing with constipation is also a perpetual theme. I am not backed up with hard lumpy stool, but I am still backed up. Yesterday evening we threw everything at the problem: Senna, Miralax, Lactulose. Gurgling occurred but no action. At 2:00 a.m., to check out an issue connected to the diabetes insipidus, the night nurse did a bladder scan -- basically kind of a portable echo scan using a wand -- to see how much urine I still had in my bladder once I had urinated. That involved pushing a wand with some pressure over my lower abdomen and bladder. This triggered significant cramps. "Gotta get to the bathroom" I proclaimed. I made it, and after some preliminary tooting, I dumped a massive load. The doctors wanted to be able to evaluate event, so they had put what they call a "hat" in the toilet to capture the stool. It was filled to the absolute brim and looked like pudding. The nurse went in and proclaimed "Wow". I asked if by nursely standards this was impressive. "You betcha". 
     Potassium. That had been rising, which raises potential problems with cardiac arrhythmias, but now the level seems OK.
     CMV. Childhood virus that virtually everyone has. Often this becomes a problem with post-transplant immune systems. IVIG is used to treat it, but that is now off the table because of my reaction last week.  Ultimately restoring an immune system will be the way to treat it. The viral load of this particular problem had been cut in half, but this is not yet "under control." That will get remeasured tomorrow.
    White cells, neutrophils, platelets, and hemoglobin. Then of course there is a issue at the heart of my illness: white blood cells. That is what the chemo is dealing with while trying to keep platelets (for clotting) and hemoglobin up. So far, almost every day I need a transfusion of blood products.
    So, you can see, there is a lot going on, lots of interacting moving parts. I think once I am fever free for a few days and they feel I am in some sort of rough equilibrium on these various concerns, I will be discharged. I'll know more tomorrow.

Journal entry by Erik Olin Wright

I was all ready to be discharged this morning when my fever jumped across the 100.4 F line. I haven’t had a fever in weeks, the number mostly sitting happily in the 97s and 98s. Then last night I had a reading of 99.1F. Not to worry, the nurse said. Next reading was back to 98.7F See, nothing to worry about. But I had seen this pattern before: a bit of instability, a little rise, then we cross the threshold. That’s what happened. In mid-morning the temperature went up to 102F. No ambiguity there. So, blood cultures had to be drawn afresh. Sepsis is one of the ways to die from leukemia and the doctors don’t want to take any chances. 
   The fever spike only lasted a short while — perhaps 20 minutes. Since then I have been back to the low variance condition. But I also felt really lousy for most of the day and so I wasn’t unhappy being under the care of the ward.
    It’s late now; I need to get back to sleep. But I am finding that letting all of you know how I am doing is part of what makes me feel so connected to everyone, and so even a brief update feels good.

Journal entry by Erik Olin Wright

Yesterday early evening I had one of the most extraordinary conversations of my life. The head doctor of my hematology oncology team. Laura Michaelis, had been away for a few days at an important annual national meeting. This was our first encounter since she got back. All told, we probably talked for nearly an hour. She noted how awful the rigors incident had been and said that I would not be subjected IVIG treatment again.
     I then said to Laura, "That wasn't my worst moment since being here. I also had the most horrifying dream of my life." I then told her about my nightmare of December 1. Here's what I wrote in the blog on December 2, the day after that dream:

"I was hesitant to write about this incident because it is so hard to put it into words and it was so powerfully disturbing. I was sleeping yesterday afternoon and had an extremely brief dream snippet, not a full-blown dream with a narrative structure. The whole thing probably lasted a second or less. It was a malevolent scene, not a story: I opened a door to a room that was filled with everyone I love and who loves me -- all my immediate family, grandchildren, extended family, friends, students, colleagues. Everyone. And they were all laughing at me, mocking my efforts to understand my illness in my blog, saying I was ridiculous. There were no words but there was an instantaneous conveyance of meaning. I let out a scream and woke up sobbing, gasping. This, I feel, was the worst nightmare possible -- the very foundation of my life, love, became empty. I have firmer beliefs in the love I experience in the world than in my critique of capitalism. If love is false, there is nothing, nothing." 

Laura then quietly said, "You know Erik, I am a devout Catholic. This is just what Jesus said on the cross during the crucifixion: My God, my God, why hast thou forsaken me."

These are perhaps the most important words Jesus spoke in the central narrative of the crucifixion. I imagine they are the words from the Gospels that are most familiar to people.We were both crying, but continued to talk. The deep parallel between Jesus's deepest moment of despair and mine was profound. I'm sure that my unconscious was not tapping into these words from scripture in my dream; they were a direct expression of a universal fear -- utter, total abandonment by the most fundamental source of meaning in one's life. The Christian God is the God of Love; or perhaps as some Christian's would express it, God IS Love. Jesus's despair is therefore: why has Love forsaken me. "If love is false, there is nothing, nothing", is how I experienced this.
 

Journal entry by Erik Olin Wright

It is a brilliantly sunny, cold winter day in Milwaukee, early in the day with the sun low in the horizon. I won't directly experience this weather; I am in my cozy room on the 8th floor of CFACF looking more or less to the South.  Yellow warm glow.

1.Sunday's skype seminar
Marcia remarked that when  I get into an animated discussion with students, especially around abstract theoretical issues in sociology, I often shed my exhaustion. I have had a number of recent visits from students past & present, and colleagues that went this way. We'd begin with catching up, me talking about my illness; students talking about what's going on in their lives. Wonderful to reconnect, to share, but I would feel the limits of my energy. Then we would drift into a theoretical discussion -- about functional explanation in World Systems theory or the contradictions inside of the state, or the implications of taking seriously the idea of inescapable dilemmas, and suddenly my energy level would increase the more intensively we would talk.  Sunday was like that (see group photo below.) It is the reason I can still imagine in spite of everything that I might be able to teach  a grad seminar next semester.

2. Singing on the floor with Ida. 
This past weekend was a completely glorious immersion in the life of my youngest grandchild, Ida. She was not allowed on the cancer ward itself, but just outside the doors to the ward, by the elevators, is a small family respite room which can be reserved. This is in addition to a large family lounge with a big LED TV and comfortable chairs, big round tables for games and other things. The respite room is small, but large enough for three couches for naps plus a recliner plus floor space to lay out a blanket for a baby to roll around on. The room has blackening shades and dimming shades and a private bathroom. We reserved it for the whole weekend, but said we could be displaced if there was a more pressing need. We basically set up camp there for the weekend, and this made possible such a deep, relaxed, meaningful time for me. Attached below is a snippet of my singing the last part of my song to my grandchildren, lying on the floor with wee Ida.

3. Attack of the Kleenex box.
This is a true story. To get discharged there are two main tasks along with some minor ones: getting the pain under better control, and getting my bowels back to a more regular rhythm. These were connected insofar as the pain management involved opioids which are constipating. As I have written before I have been very reluctant to use any opioids, but I am now a convert to good pain management. I have gradually accepted new forms (for me) of pain medication, and each time the added relief was significant. Yesterday afternoon the palliative care doctor convinced me to use a fentanyl patch -- "Don't worry," she said, "it is NOT that fentanlyl" -- and unquestionably it is an improvement. I have reduced the Dilaudid and I really feel good, I'm back home in my body at ease, and without any loopiness. So I'm on tack on the pain issue. But then there is the constipation, the dreaded locking down of the gut. All opioids are seriously constipating. That was the original reason for my strong no-opioids injunction and the reason the Poop Queen has pursued such an aggressive prophylactic anti-constipation strategy.
      Well, as I think I wrote a few days ago, that strategy got torpedoed by the floor doc on the weekend who canceled the prescription for Senna since it had triggered diarrhea. This was the first significant breakdown in good communication with docs over the 8 months I've been in treatment.  Since then we have been working hard to undo the mistake: miralax, triple dose Senna morning and night, hydration, and some other concoctions. 
     What does this have to do with a Kleenex Box, you might well ask. Well, at night I prop up a Kleenex box against the railing on the right hand side of my bed so I can find it in the middle of the night. It was about 4:30 a.m. this morning. I was sleeping very soundly and, it seems, I had gradually scooched over to the lurking Kleenex box, to the point where the sharp corner of the box was pressing against my forehead. Suddenly I crossed some tipping point and woke up with a shriek. Marcia leaped out of her bed and came to my side. There was a big dent in my forehead. In the darkness she couldn't tell what had happened. "Eriki, what happened?" she asked with some alarm. The pain instantly subsided, but the dent continued. I sat up, probably said something about the Kleenex box attacking me, got out of bed and went to the bathroom. And dumped a load. What sweet relief. The next day I told the Queen of Poop that she needed to add to her strategy of constipation management, attacks by Kleenex boxes.

4. What what Whatwhat whatwhatwhat What?
Prior to my illness my hearing was pretty good. Judging from the preferred volume of the TV, Marcia's has been in the slow slippery-slope decline for some time, the fate of most members of our species. Since my illness, alas, my hearing as well seems flukey. Its a bit like coming in for a landing in an airplane without being able to clear the tubes out. The result is that the most frequent word used between us in our little world is "What". This is especially the case at night when I am in my hospital bed and Marcia in her couch-bed. I sleep on my right side so my right ear is on the pillow. My right ear has, I think, a bit better hearing than my left ear. So when I'm snuggled down I often miss 50% of what Marcia might be saying. What? What did you say Marcia?

Journal entry by Erik Olin Wright

My Day:
1. Hung out with Joel, Becky, Ida & Marcia for an hour or so in the morning. Talk about politics, the collapse of the Wisconsin model of decent state level progressive politics, but in spite of all that, the sources of hope and even optimism.
2. mini-nap.
3. Went for a half-mile walk around the CFAC8 corridors with Becky  
4. Delicious Mini-nap in room with Ida chattering away.
5. More general hanging out with Becky and Ida, and marveling at the weirdness of feeling so happy and content
6. Chemo infusion and chemo pills. Still no relief on spleen pain, but white cell count down. Potassium is also declining so perhaps I'll be disconnected from telemetry tonight.
7. Nearly two-hour skype seminar with a reading group of Canadian activists in which David Calnitsky's younger sister, Shauna, is involved. They read the final version of my How to Be in Anti-capitalist book. The session was beautiful, completely absorbing and inspiring for me. It felt wonderful to be in such deep dialogue with young activists. I was asked how I managed to remain so optimistic and hopeful. I said it was an interesting question at this specific moment because optimism/hope refers both to my body and to the world. I explained why I disagreed with Gramsci's aphorism about optimism of will the and pessimism of the intellect -- without some optimism of the intellect it wasn't possible to sustain optimism of the will. Besides, it is too easy to be pessimistic -- there is no intellectual challenge there. Optimism takes work!
8. Took shower.
9. Wrote this blog.
10. Time to watch an episode of The Marvelous Mrs. Maisel.

Journal entry by Erik Olin Wright

I keep trying to figure out exactly how I can feel such total, deep happiness at the moment given my illness and that I am not in denial about its prospects. I don’t quite have the words to describe the feeling. I Know about “resilience”, about the unity of mind and body or emotion and body (although that could just as easily evoke despair), about “compartmentalizing” certain feelings. I talk about these things, say these words, and they tap into the reality/unreality of what is happening, how I’m feeling, but they do not convey things fully.
    This weekend Becky is visiting with Ida. Jenny came from Madison this afternoon, but Safira had a runny nose so she had to stay home. We hung out in the wonderful family respite room much of the day. Marcia, Jenny, Becky and Ida and me. I went on and on about love, fullness, happiness “all the way down”, and how this was unsullied by the physical state I was in or the prospects of dying. Then at 3 p.m. I needed to return to room 31 for my chemo. I stood up. It is a two minute walk. I suddenly felt unglued. That is the word and image that came to mind. Like there was a wall with nicely-glued seams that started to leak and then began to burst — a wooden wall that was also a dam of some sort. It burst and I was overhwelmed with emotion — a flood of emotion?  I was walking ahead of Marcia and staggered down the corridor. Spleen pain once again. I had been trying to stretch the pain medication. The pain was not all that terrible, but it played into the inner sense of things falling apart. I fell into bed. Soon the intensity subsided. The emotional flood retreated. I slept a little and awoke reglued. 
     This isn’t in any way shocking, certainly not surprising, or even disturbing. I am deeply happy, and I am deathly ill. That is the reality/unreality in which I live. Maybe there is nothing more to figure out.

Journal entry by Erik Olin Wright

medical update. I am now in full bore attack mode with the new chemo combo. So far no noticeable side effects. There are only two things I've been contending with: high potassium & mild constipation. The high potassium is a problem because it can trigger heart rhythm problems, and given the episode of atrial flutter, we can't have that. I'm taking various meds to deal with that, but until the number comes down I have to wear annoying heart telemetry. As for the dreaded constipation, the "Poop Queen" (who proclaims she wears her crown proudly) has pretty much solved that by segueing me delicately from mild constipation to mild diarrhea -- a fair enough switch in my book.  
     I will have a total of five days of the decitabine chemo infusion along with the venetoclax fancy chemo pills. After that I should be off the infusion for 22 days and hope to be discharged from the hospital. That would probably be on Tuesday, December 11. All of this is intended to fight the aggressive relapsed AML to create the environment for my engrafted transplant to function and start producing active T-cells to join the fight. If it were a spectator sport it would be exciting.

wonderful day
Becky and Ida arrived last night and are staying in our little apartment 3 minutes from the hospital. The hospital ward also has a family respite room which we reserved for the daytimes of their visit. It is wonderful --comfy seating and couches for naps, totally quiet, and with shades down, dark for Ida to nap, with a private bathroom. We spent nearly all day hanging out. This time, like my visit with Jenny yesterday, is the deepest happiness for me; happiness all the way down, unsullied by the health difficulties and the prospects of dying. I'm surprised by this in some ways. I desperately want to live. But I also could not feel more fulfilled and happy than I do right now in this present moment. I am not saying that the prospect of dying never interferes with my happiness, but not yesterday and not today.  

Journal entry by Erik Olin Wright

No drama today -- what a relief. Everything has stabilized. The new chemo medicine, venetoclax, has finally arrived, all obstacles overcome, and I just took the first pill. This is the chemo that was just approved by the FDA for AML and is supposed to block cell division for cells that express a particular protein (or something like that). This turns out to differentiate between my donor white cells and the cancerous AML white cells. The head of the HemOnc team, Dr. Michaelis, also decided to restart the new chemo infusion that had been interrupted by my fever last week, decitabine, which I will get as an infusion for five straight days simultaneously with the venetoclax. This is going after the core disease processes "with all guns blazing", knowing that there will be side effects to deal with, but wanting to get on with the central task of this battle. (Again: in spite of my values, I can't see how to avoid the military metaphor. It seems to fit the symbolic realities of what is going on in my body, so I'm not going to worry about it any more). I expect therefore to be sicker in the days to come -- hopefully nothing like the previous few days, but sicker nevertheless. I should have some tumor lysis -- the dying off of tumor cells. If this occurs too rapidly you can have a draining off of electrolytes, which can cause havoc with kidneys especially. Rigors is also listed as a potential side effect, but certainly not as intense as on December 4th, and in any case I don't think would trigger the panic I experienced then. So, once more into the breach! I'm excited.

Visit from from Jenny
I had a wonderful, deeply moving visit from Jenny and Mark this afternoon. They are staying at our house in Madison while Mark finds a job in Atmospheric sciences. It works perfectly that Madison can be a base of operation and that Safira is in a fantastic Montessori preschool program. Becky and baby Ida are coming for three days starting tonight, and Jenny will come back for a visit with Safira on Saturday. So I will be engulfed with the presence of my two daughters and two of the three grandchildren. The best medicine possible.

Journal entry by Erik Olin Wright

At the moment, the morning of Wednesday, December 5, I am feeling terrific -- negligible pain, inner calm, good enough energy, well rested. This is important to keep in mind: I can have a day like the one I report below which resolves itself into a feeling of wellness. But yesterday was something else. The story has four episodes.

Episode I. How not to figure out level of pain medicines. 
On Monday I was shifted from the IV Dilaudid pain medicine to oral medicine. This was part of a general move to get me off of IV medications which is needed for me to eventually be discharged. The issue then becomes the dosage, because the levels for oral are different from IV delivery. Dosage has two dimensions: how much (mg/dose) and how frequently (scheduled as every two hours or "as needed"). And then there is the monitoring for pain issue: should I be woken up to see what my pain level is on the 10-point subjective pain scale? I tried to explain to the night nurse that I had no basis for making a choice, since I didn't know the trade-offs among alternatives. I initially had a preference for no narcotics whatsoever, but once I was in the world of active pain-management, then I needed guidance, I needed someone who would give me professional guidance, tell me what the trade-offs were, etc. Instead, on the night of Monday-to-Tuesday, I had a night nurse who insisted on getting me to make a choice about everything every time. The night nurse was not one of my regular nurses but was filling in, and for whatever reason we couldn't get through to each other on this issue. Every time I was given pain meds I was asked to make choices. With one exception: my preference  over whether I should be woken up to check on pain levels was ignored. The point of the pain medication is mainly to get me comfortable enough to sleep, so why wake me up to see where my pain level is on the 0-10 scale?  All night like that. Somehow we never could sort this out. The next afternoon I had one of the best of my regular nurses. She shared all information and then made the choices for me when I asked her to. And now everything is going smoothly.
     This episode brought home the complex issue around preferences and choices. This is such a salient thing in the current era -- the mantra of choice dominates the health care discussion, so people using Obamacare are required to go over alternative plans and make a choice. But to make choices with complex trade-offs when it is basically impossible to have a meaningful understanding of what is in play in those tradeoffs is exhausting. (Single payer healthcare would solve this problem of course!!) The same goes for investment decisions and smart phones. Sometimes what is better than having unconstrained choice is having trust in someone who really knows what's important, what the risks are, someone who is really an expert and will act on your behalf. That is what I needed -- to be relieved of the burden of choice. I had one preference: to have my pain managed well-enough that it didn't interfere with sleep. Translating that into a dosage regime was something I was happy to delegate to someone I trusted who knew what they were doing.

Episode II. Intravenous Immunoglobulin (IVIG) and Rigors
As part of the strategy to control the growth of the CMV virus I need a transfusion of immunoglobulin. This fluid is gathered from healthy adults and contains their antibodies which help repress all sorts of viruses. People with permanently depressed immune systems often get monthly infusions of IVIG. But it is very tricky to administer. Since nearly everyone is vulnerable to allergic reactions to something in the infusion, they load you up with pre-meds -- Benadryl + steroids -- and administer the transfusion at a very slow rate, only increasing the rate in small steps in light of the reactions. Well, yesterday all went well for the first 50% of the transfusion. Then, one tiny increment in the increase in rate and kapowie, I was hit with extraordinarily intense rigors. I was rigoring.
      I have had one prior episode of rigors here which I reported on in the blog in the summer. Rigors (pronounced Rye-gors) is a condition of severe shaking with chills, bone-rattling shaking that seems uncontrollable. That is what I experienced in the summer. It was terrible. This time was much worse. I was sitting up when it started. In addition to the shaking all over I had muscular lock-down in my legs and torso and jaw. I could barely speak. I screamed out, I need help.  My heart rate went up to a dangerous level. My breathing increased to rapid, shallow breathing. Marcia was at my side stroking my head, holding me, urging me to slow down my breathing and take deep breaths. I tried. I tried over and over, but I just could not control anything. Through clenched teeth I tried to say "I can't", but I wasn't sure anyone could understand me. 
     The nurses immediately sprung into action, and the PA was called to the room. They remained completely calm and outwardly just taking care of business. Later I commented on this and was told that inwardly everyone was tense and in high-intensity mode. Emotionally, for me, I am not sure what would have been most reassuring, more calming to my completely panicked emotional state: getting clear signals that the staff also saw this as a serious crisis and expressed this in their voices, or the extremely calm and matter-of-fact way in which their communications took place. For me, the world was becoming unglued, breaking apart. The pain was intense, but of a kind that suggested something could burst or collapse at any moment. But everyone in my environment was so cool headed. That was probably for the best, I am sure.
     It took about 15 minutes for any alleviation of these symptoms at all. The transfusion was immediately stopped and I was given high doses of steroids, Demerol and Benadryl, all IV. The first administration of these didn't have an effect, but the second did. The shaking abated a bit and the lock-down eased off rapidly. By the time I was no longer rigoring, a half hour had passed, but it took a bit longer for my blood pressure, heart rate and other things to settle down. With all of the drugs pumped into me, I then drifted off to sleep.

Episode III. The IVIG Party
Sleep, of course, was just what I needed. Some of my sleep was deep, but much was the kind of liminal sleep that moves back and forth across the boundary of being asleep and awake. The boundary is one in which I felt I was simultaneously awake and asleep rather than simply "half awake". I had, repeatedly over three or four cycles of this, the following conversation with Marcia:
    "Where's the IVIG Party?"
    "What do you mean?" Marcia asked.
    "We were at the IVIG Party, " I said in all seriousness. "The men were all wearing tuxedos and the women poufy dresses that made loud crinkly sounds when they walked around. You were wearing one of those. We need to go to Chicago for the rest of the Party"
     "Honey, we're in Froedtert Hospital in Milwaukee, " Marcia patiently explained. "you're here for treatments for Leukemia."
      "I know that!", I replied with some irritation. "But where's the party?" In my dream-mind we were in the corner of some vast warehouse-type room. In the distance was a party, with men in tuxes and women in crinkly. There were also giraffes at the party for some reason.
      Marcia stayed by my side, stroking my head. "It's OK. We're in Froedtert"
      "We need to go to the Party. But what's the point? What's the point of the Party?"
      I drifted back to sleep.
      I woke up. "What's the point of the Party?" 
      Marcia suggested that we could sort that out tomorrow.  
      Gradually over several cycles of this, my confusions dissipated. I no longer had any delusions about the party. All that was left was the question, What's the point? But that was clearly a question about leukemia, not the party.
      What's the point of leukemia? That is a really stupid question. Our human effort to cure the disease has a point -- a purpose laden with meaning -- but the disease itself isn't there for a purpose.

Episode IV. Aftermath
I slept beautifully last night, even though my night-sweats have returned with vigor (five t-shirt changes last night). My peaceful sleep may be due to all the drugs I got yesterday afternoon to deal with the IVIG rigors, but those should pretty much be completely out of my system by now. In any case, for whatever reason, today I am at-ease physically and mellow in the aftermath of yesterday's intensity. 
      The main immediate concern ahead lies in getting my white cell count down in order to control the blasts and significantly reduce the enlargement of the spleen, which would also eliminate the spleen pain. The delicate trick here is to do all this in a way that minimizes harm to my new transplanted immune system.

Journal entry by Erik Olin Wright

A true fact
Everyone knows that one of the side effects of chemo is loss of hair on the head. We all have images of bald chemo patients. Men tend to display their bald heads; women often want wigs or use scarves to deal with baldness. Some, like me, shave off all their hair before they are completely bald just to see what it is like. Pretty cool I thought. But there is more to chemo hair loss than bald pates.
    One of these is loss of inner nostril hair. Not a big deal, but if you tend to get a runny nose in the winter -- not as a cold or infection, but just a condition -- then the drip of clear liquid from the nose can become more or less constant with nothing to impede its flow. Periodic splashes of runny nose on the keyboard while typing. Constant reaching for tissues.
    There is more.
    Remember when hair began to grow in new places when you were an early teenager? Yes: pubic hair, nearly all gone. No big surprise there.  But there is an aspect of this for us boy persons that I didn't expect, never realized. Puberty also brought tiny hair follicles to the scrotum, the sacks into which testicles descend as Boys turn into Men (drum roll). I never once thought about this. Maybe this was because I never tended a boy baby; both our children are girls. Well those tiny hair follicles turn out to have a real function. They prevent the scrotum from sticking to the inner thighs. So, if you are a male (like me) and at night you sleep on your side (like me) or in the day you sit with your legs close together and crossed (like me), then when you get up and separate your legs, your scrotum is stuck to your thighs, kind of like the way silly putty sticks to things. Never thought I'd write a sentence likening my scrotum to silly putty, but so it goes. 

medical update
I had hoped to be discharged today. I had been told on Saturday that I needed 24 hours free of fever for discharge, which in practice means 36 hours. Well, I have been fever-free for over 48 hours. Unfortunately, a new complication has occurred.
      There is a virus that virtually everyone has had since being a baby, CMV. Harmless in general, completely suppressed by even moderately functioning immune systems. But in post-transplant patients this can flourish and become a really nasty complication. So, the doctors test for CMV as soon as one has had a transplant. For a month my levels were undetectable. Then last week in the lab there appeared what was described as 300 copies of CMV in the relevant unit of blood (probably a micro-liter, although I didn't ask). That is not a level that poses any risk. The issue is whether it was rising and how fast. New tests were done last Friday the 30th, but the results were only available today. The level is over 4000, so treatment for this is needed. Alas, none of the treatments are ideal for the overall situation I'm in. They are all filled with side effects, including side effects on my immune system rather than just the virus in question. Nevertheless, I will begin later today taking pills to deal with the CMV. And this will require careful daily monitoring, so it was best to stay in the hospital.
        One final reason I need to stay in Froedtert: the core new chemo I will be taking that will deal more aggressively with my nasty refractory AML has finally been approved by my insurance. It was just approved for my disease a week ago by the FDA, but the insurance company required more documentation. That drug, venetoclax, apparently identifies a protein in the AML white cells that is not present in healthy white cells, and while it suppresses all white cells, it does so more effectively for the leukemia cells. Or something like that. But, as usual, it has potentially serious side effects, so close monitoring is needed initially.  
       Thus, here we will stay for an indeterminate time. They say maybe we'll be discharged by the end of the week. I say, sometime next week. Place your bets. So it goes.

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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