Journal

Journal entry by Erik Olin Wright

It is hard not to have a military metaphor for treating cancer. Battling cancer. Putting up a heroic struggle. Chemotherapy is chemical warfare. My doctors are a war cabinet planning their attack. The nurses tend the wounded. And the war has a narrative structure, with skirmishes and battles, strategic retreats, rallying the troops, endlessly spying on the enemy.

Two nights ago was the first serious skirmish: my temperature spiked modestly and I went through  six or seven hours of chills and night sweats (I soaked six hospital gowns in the course of the evening), feeling really awful. Up until that point, I never felt sick. I could gleefully say in emails that the diagnosis was out of the blue -- no symptoms. I was immediately put on various IV-drip prophylactic antibiotics and heightened visits from staff. The fever broke around midnight and I immediately felt much better. The rest of the night was shaky, but not terrible. And during the course of the day I felt continuously better.

The whole episode fits the military metaphor. August, 1914. World War I begins. Cheering in the streets. Young men volunteer in droves in Britain. We'll be back by Christmas. They land in Flanders, march off to Flanders a couple of weeks later. All very Jolly. I was diagnosed April 6, arrive here April 11 symptom-free. I didn't cheer the war, mind you, but there was no real dread. When asked how things were going I would reply, "If I didn't have a dire illness, I would code all of this in the 'interesting' column." The illusion disappeared when I reached the front. All hell breaks loose. Confusion, uncertainty as a lived reality rather than intellectual perspective. Is this what its like? Is this the "New Normal". But then the bombardment suddenly stops. Things calm down. Now a full day later it is like being on leave from the front, hanging out in a pub, comfortable, at ease.

So, what happened was not a "New Normal", but an episode. This is reassuring, of course -- it is easier to tolerate pain knowing it will end. Torturers know this, is why they try to avoid killing someone under torture and promise and end to torture if the target cooperates. I know that there will be much worse episodes in the war ahead and some will be extended for days, maybe longer. But there will also be periods of leave from the front.

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Journal entry by Erik Olin Wright

I am going to keep a running list of all of the positive things about having acute myeloid leukemia. When grad students from California come to Wisconsin and seem worried about the winters I tell them, "You need to find some reason to regret the end of winter." For me it is cross-country skiing. So, here are some items already on my list:

1. I ate my first bowl of ice cream in 25 years. In 1993 I switched to a strict low fat diet for cardio-vascular reasons. At that time the recommendation was just "low fat." Since then there has been a much more nuanced set of recommendations about different kinds of fats, and refined carbohydrates are now seen as especially bad for cardio health. But one constant through the 25 years is that saturated fat is bad for you, so no ice cream for a quarter of a century. The doctors and nutritionist here tell me that I need lots of calories in this battle, and that since my appetite is likely to decline, I should just drop the restrictions. Marcia got me Ben & Jerry's Cherry Garcia ice cream and I ate an entire bowl.

2. Marcia agreed to watch Games of Thrones. I enjoyed listening to the Game of Thrones  audiobooks (while exercising) and had seen some of the episodes in the HBO series, but Marcia doesn't like movies with a lot of violence, so I could never convince her to watch it with me. She felt that "under the circumstances" she would give it a try. She still doesn't watch the many violent bits, but she is enjoying the characters, the saga, and the strange mélange of fantasy and medieval realism.

3. I get a month vacation just with Marcia in an exotic location with beautiful views of Milwaukee from the 8th floor of our "home away from home."

4. For the first time in 42 years as a professor, my must-to-do-with-a-deadline list is empty. 
When I initially got the diagnosis I knew that I would have to cancel a range of plans, especially an interesting trip to give lectures in Italy, Germany and Norway in late May and early June. Once I got here I was told I should basically cancel everything until the end of 2018, and possibly longer. I began by informing anyone whose own plans would be directly affected by my situation, and then cancelled everything. This involved finding other people to take over various responsibilities for some conferences I had organized, arranging for my teaching to be covered one way or another for the rest of the semester, telling graduate students that I wouldn't be able to write comments on dissertation drafts, taking a leave of absence of the Politics & Society editorial board, etc. The result is an empty list of things with deadlines. I still hope to do some writing on the book I am finishing, and perhaps clearing my desk will make this even easier.

I will add more things to this list as time goes by.

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Journal entry by Erik Olin Wright

I have sent many of you the following account of what's going on:

On Friday, April 6, I was diagnosed with acute myeloid leukemia. This was completely out of the blue – I had no symptoms at all. The suspicion was raised as a result of a pretty routine blood test and then confirmed by a bone marrow biopsy. Given my age and the details of the mutations involved, this is not the kind of leukemia that can be kept at bay by periodic cycles of chemo and remission. The only real approach is to try for a complete cure through intensive chemotherapy followed by a stem cell transplant which basically gives me an entirely new immune system. The whole process is fraught with potential problems ranging from glitches to set backs to catastrophes, but there is a non-remote possibility that at the end of the process I’ll be fully back to normal. That’s my plan!

 

We decided to have the treatments at the Froedtert Hospital of the Medical College of Wisconsin in Milwaukee rather than in Madison. I activated my doctorly networks as soon as I had the news – my brother-in-law at the University of Florida medical school, and two doctors in Madison. They each talked to the hematology oncologist they knew with whom they had the most confidence. And all three said that the Medical College of Wisconsin was the place to go for stem cell transplants. I managed to get an appointment for consultations on Tuesday, April 10, with the lead doctors in both the hematology oncology team and the transplant team, and felt extremely good about them as people as well as their approach to the whole endeavor. We could have still done the first phase of the process in Madison, but it seemed better to have everything in one place.

The steps in the process, as best as I can tell, are:

1. A month of chemo, which began April 11, to produce a remission, defined as no longer detectable cancer. The chemo in this phase has a newly approved slow-release formulation which mutes the side-effects while still being more effective. So far, no nausea and no hair loss. If I get a full remission, then I move on to step 2. If not, repeat step 1.

2. 4-6 weeks of recovery from the chemo. If the cancer recurs in that period, go back to step 1. If not, on to step 3. To get the information requires bone marrow biopsies. As a psychologist friend of said, alluding to rat studies, “I wouldn’t press a bar for it.”

3. The stem cell transplant. This involves finding a match from a registry of 27 million donors worldwide. As I understand the process, there are eight specific genetic markers, so a perfect match is 8 for 8. One doesn’t need a perfect match to survive, but it reduces the chances of graft/host disease. Assuming an adequate match is found, then my entire immune system gets wiped out – not just the cancer cells, but everything. This is the kind of powerful high-side effect chemo that I associate with chemotherapy. This is going for broke. If the transplant fails, then that’s it. This is like getting a heart transplant: once the old heart is gone, the new one is what you have. With a good match, then the success rate is pretty high. All of this involves another month in the hospital.

4. Following the transplant hospitalization, we will have to live in Milwaukee fairly close to the hospital for 45 days because we will have frequent outpatient appointments, and there is a significant chance of infections requiring rehospitalization during this period. The big sources of catastrophe are infections and graft-host disease. More bone marrow biopsies. This, more or less, takes us to the end of the summer.

5. If I make it through 4, then we can return to Madison, with lab work being done in Madison, and periodic trip to Milwaukee for clinic visits for six months or so.

6. By sometime next spring, back in the saddle!

I am now in the midst of step 1 of the treatment. As the lemming said in freefall half way down the cliff, "so far so good."  When I wrote this to one of my students, he replied immediately: fortunately there was a trampoline at the bottom of the cliff.  I’m feeling hopeful, and even optimistic, but of course there are so many ways this can be derailed that I also try to be cheerfully realistic. What I absolutely will try my best NOT to do, is let the prospect of dying in the next few months contaminate the time while I am alive. We all die. That’s not news. And the one thing I know for sure that while I am alive I’m not dead. So why spoil it.

I like to think of this as an expedition into an unknown wilderness with perils rather than a catastrophe from which to be rescued. I still have no plans to retire when I get through this adventure and hope to be back in action in 2019.

 

 


 

 

 

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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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