Journal

Journal entry by Erik Olin Wright

1. Another story I composed in my sleep
I don’t know know why my dreams are so full of story writing, but once again last night I dreamt that I was writing a story. This time the character of the dream was a little different. When my children were little I often told them and their cousins stories, especially when we were driving or camping and the like. I never planned them out ahead of time, but they often revolved around a gimmick of some sort. I think of a story-gimmick as a story-generating machine: with a good gimmick in hand I would spin a yarn filled with silly happenings. Usually the kids were in the story as well, as in our endless search for the McMurtry chocolate mine in the Sierra Nevada. One of these stories was about two little kids named Josie and Jessica. The gimmick was that Josie could turn himself into any animal he wanted but he coudld stay that animal for only 30 minutes, and if he did this trick too many times in one day, then he would be stuck as the animal for 24 hours. This story-gimmick opened up a vast array of funny stories. Those were the stories I concocted 30 years ago. 
     Well, I guess it was time to have a new story-generating gimmick for my grandchildren, and in my dream this is what I concocted. The gimmick revolved around a typology of witches (who in the dream were both male and female) — and yes, in the dream this was built around a 2x2 table: (1) are their powers strong or weak; (2) do their powers work at a distance or only by touch. Then there were two other types, not in the basic set: (3) witches who could confer powers for a short time on nonwitches, but themselves had no powers. These witches were especially useful on construction sites where they could confer superhuman strength on a worker for a few hours. (4) Witches who were called “duos” who had a very wide range of powers, but those powers were only active when they were holding the hand of another duo. Most duos never learned that they are in fact duos, for they only become aware of their powers once in physical contact with another duo.
    The opening scene of the story in my dream: Safira was visiting Vernon. Vernon was four years old; Safira five months older. Little Ida was one and a half. Vernon proclaims enthusiastically: “Wouldn’t it be nice if we could fly?” “That would be fun,” Safira says and then hugs Vernon. Their hands touch and they rise from the floor.” And so the story begins.
  Two other parts of the story-sketch. What to do with Ida? She needs to be part of this. This was my solution: Becky and Jenny soon learn that S&V have these powers. They go to the library to research the matter and find a very musty old book that talks about all of the different kinds of witches. In the chapter on duos, the book says that a person only becomes a duo on their fourth birthday. So, the big question is: does Ida have witch power? On Ida's fourth birthday Safira and Vernie hold hands, first just the two of them. They fly around the yard together. Then they land next to Ida, hold her hand and say "let's fly" and they shoot up into the sky like a rocket. They are the first Trio in the history of witches!
   The other element in the story: I am the narrator of the story. I'm explaining various things about witch history and witch powers. I then say, "most witches are lovely people, trying to make life better for people. Sometimes they play tricks, but these are almost always playful. There are, however a few witches who do great harms. They are Evil Witches." Vernie then jumps up and yells, "No evil witches in my story." I explain that there are always bad guys in stories, that this is needed to give the story some conflict and tension. Vernon then says "My Daddy says that you don't need conflict in a story." [Adriano's most recent play, directed by Becky and still playing in Philly, is called "A Perfect Day." It is deliberately a story that is not built around conflict.]
     So, there you have it. Once the kids are a little older -- four-ish I think -- I'll begin telling them the story of the three little witches and their adventures, with no evil witches.

2. Medical Update
I had my first outpatient clinic visit today, preceded by labs. The labs were super-annoying. I was scheduled for 10:20, but the lab had grossly overbooked appointments, so I wasn't seen until 11:05. Then the labs were drawn by a tech in training, so every step had to be checked by her supervisor. They had in their orders that my PICC line dressing needed to be changed, which was in fact an error since the nurse had changed it just before my discharge on Monday, which added another twenty minutes. And then they did not have in their orders that I needed blood drawn directly from my peripheral blood (rather than via the PICC line) to check the level of the anti-rejection drug in my blood. The tech-in-training first tried to get a blood draw from my left arm, but she couldn't get the blood to flow. She wiggled the needle around, trying to find a vein, but to no effect. So, her supervisor took over and took the blood from the back of my hand. She was also a little heavy handed -- no Etienne, alas.
   Then I went to the clinic to see Dr. Hari, the head of my BMT team. Mostly excellent news: Hemoglobin jumped to 9.9, the highest it has been since March; 3,700 neutrophils per microliter; platelets only a little low. But also a slightly ominous number: 2% of my white cells were blasts. Blasts. The dreaded blasts. There are, however, two kinds of blasts: immature neutrophils that spilled out of the bone marrow because it's working in overdrive; and leukemia cells. It could be the case that these are all of the first kind of blast, but I suspect that they are the first reappearance of leukemia. We knew that the chemo and radiation I had in the run-up to the transplant was very unlikely to have obliterated completely my defective hematopoietic stems cells, so it was to be expected that we would have to contend with remnants producing leukemia. I suppose I had thought there would be a longer period before we had to contend with this, but as we say in cancerworld, it is what it is. I will have a bone marrow biopsy next Wednesday, which will definitively tell us what's going on. Dr. Hari said that we are in a very good position to fight this and that they have lots of options. The basic idea is to shift the levels of anti-rejection medications to allow the new neutrophils more room to maneuver in attacking these leukemia cells, to put me back on some oral chemo, and do some other things to strengthen the new donor cells. This is sobering, but I am not discouraged. And perhaps these will, in the end, be the happy blasts rather than the malign ones. No evil witches allowed!

Journal entry by Erik Olin Wright

It as about 10:30 at night. I think I have slept probably 20 hours out of the last 24. Marcia dragged me out of bed to take my night time meds and I seem to be slightly revived, so I’ll write a blogette to keep everyone informed.
     It turns out that we we only had to stay at Kathy’s House one night because the apartment in which we will be staying until January was cleaned and available. It is a sunny, small two bedroom place, perfectly nice for our needs, and very convenient to everything. The second bedroom will make a nice guest room for anyone who visits from out of Wisconsin. Tomorrow morning is my first outpatient clinic visit, so once we have done that our basic medical routine for the next phase of treatment will be in place. Let’s hope the routine is uninterrupted by any exciting symptoms. I am so eager to be a boring patient.

Journal entry by Erik Olin Wright

Noon, November 12. Waiting in 8CFAC room 9 for the pharmacist to come by a go over all of the many many many pills I have to take, then we're out of here. Two and a half months is a long time in a hospital room. It has been a good place to be, enjoyable under the proverbial circumstances. But now I'm ready to go and start the next chapter.

7pm, Kathy’s House. I’m out in the world. I breathed fresh air for the first time since early September — cold, crisp, wonderful Wisconsin autumn air. At 2pm we drove to Kathy’s House, a facility for families and patients at Froedtert. We have a pleasant, comfortable room and access to a fine communal kitchen. I think this will be excellent as the interim place for us to stay until the apartment is ready sometime in the next four or five days. And the biggest surprise of all: this evening I had a proper meal, much to my pleasure and astonishment. The first real meal in about two months. Kathy’s House does not normally provide meals, but tonight there was a special pre-Thanksgiving Thanksgiving dinner — turkey, stuffing, gravey, mashed potatoes, cranberries — provided by volunteers. I suppose there was a small risk involved in actually eating it, but we were told I could now eat at “reputable” restaurants, and we figured this was a close enough facsimile. Before dinner, as suggested by the doctor today, I brushed my tongue with a tooth brush and had an anti-nausea pill just in case. And lo & behold: I could actually eat the food. 

So now we enter a new routine. We have to sort out the 40 pills I take a day (I asked the pharmacist and he counted them) into the times when they need to be taken. Marcia bought a giant pill tray to help us out on this. And we need to organize the day to allow for some gradually increasing exercise. Once we are in the apartment I will join the gym that Marcia joined — she has been swimming half a mile almost every day! — and do some strength training and mild aerobic workouts. Clinic visits will be three times a week. This will be the routine until everything goes haywire with a fever or a symptom of host/graft disease (rashes, nausea, etc.). These happen to roughly 90% of patients who then require brief re-hospitalizations. We’ll try our best to be in the 10%.

At the moment I am feeling very happy to be out of the hospital, as much as because of what this signals — that I am on track — as because of the physical pleasure of being in the world. The fatigue remains the major issue of functioning in this world, but I am assured that this too will gradually abate. 

Journal entry by Erik Olin Wright

Yesterday midday I gave myself a shot of neupogen, a drug that stimulates the bone marrow to ramp up its production of neutrophils. The idea was to get me above 500 neutrophils per micro liter, the threshold for discharge. Yesterday my number was 290. This morning's number: 3,900. Unbelievable. The normal range is 1,500-8,000, so I am smack dab in the center of normality. The level of neutrophils won't stay this high, but is still likely to settle down above 1,000.
      This neutrophil level definitively confirms discharge from the hospital. The plan is for discharge Monday morning. We will then move for a few days into a place called Kathy's House which rents rooms to patients and families who need short turn accommodation near the hospital, and then move to a proper one bedroom apartment owned by the hospital later in the week. We will be there for the next 60 days or so.
       For the moment I am feeling very good and peppy. Since I am now eligible for discharge (even though I will stay here for two more days since Kathy's house is full until Monday), I have been unhooked from the IV. It is wonderful to be untethered -- to walk freely and not get tangled up in tubing. Below is a photo of me freed from Pola, the IV Pole.
       So, next week I will be out in the world, entering the next chapter of this saga. I am not really out of the woods -- there are still real hazards ahead: infections, in spite of my happy neutrophils; graft/host disease, in spite of my perfect match with the donor; and a resurgence of the leukemia, in spite of the grand efforts to eradicate it with radiation and poisons before the transplant. The last of these is the most serious risk;  as the head of the transplant team cheerfully said, "if anything is going to kill you it will probably be a leukemia relapse." Almost for sure remnants of my defective stem cells still exist. The hope is that they will be overwhelmed by the new immune system, but that is a hope rather than a certainty. I feel I have come a long way and been through a lot, and I am feeling happy and optimistic about what lies ahead. I don't worry (much) about relapse, but it is a possibility. I am determined for that possibility in the future not to intrude on my life in the present.

Journal entry by Erik Olin Wright

It looks like I will be discharged from Froedtert on Sunday, November 11. Here's our plan: The first night we will spend at the Marriott Residence Hotel across the street from the hospital. Monday we will move to Kathy's House, a facility for family members and patients, for a few nights until the apartment, five minutes away from the hospital, which we will be renting until the end of December is available. That should be by Wednesday or Thursday. 

I thought this would be a good time to take stock of New Life Experiences that I have had since being diagnosed with acute myeloid leukemia in early April. Here is my provisional list. 

New Experiences since April 2018 because of AML (not all at the same time)

1.     PICC line. There have been some occasions -- like when I spent a night in the hospital after being hit by a car in 2015 or when I had a heart attack in 1993 -- when I have been attached to an IV pole, but I have never had a PICC line installed to deliver drugs and to draw blood. I love my PICC line.

2.      More than a few days straight in a hospital -- ten weeks as of November 9. My hospitalization this fall has been the longest by orders of magnitude. I am ready now to leave because I am feeling well, but at no time during my hospitalization did I feel "stir crazy" or want to be anywhere else. Here I felt safe, protected.

3.      Depth of exhaustion, fatigue, tiredness, day after day. The levels and quality of fatigue I have experienced, especially in recent weeks, is like nothing I can recall in my life. Fatigue that restful sleep does not abate.

4.      Abrupt exhaustion. This is different from just the depth of exhaustion. There are times when I suddenly feel completely depleted – like a car running out of gas. One moment, chugging along just fine. Then, nothing.

5.      Mountain of pills to take every day – over 50 a day. Endless pills of all description. A few of them have really unpleasant casings.

6.      Night sweats – up to 9 t-shirts drenched at night (these ended a month ago!). For many months, my sleep was continually disrupted by wet t-shirts. I would sleep with a stack of fresh t-shirts next to my bed. That suddenly stopped at the end of September, before the final conditioning that destroyed my bone marrow.

7.      Being bald (while not being a baby). I have always been a bit vain about my head of hair, but also curious about what I would look like bald. Just before the conditioning phase of the treatments when I would have lost most of my hair anyway, I decided to shave it all off. It's been fun being bald, even though I still don’t recognize myself in the mirror. I’ve now stopped shaving it off in the shower ever night, so it is growing back. I love when Marcia strokes my head now. With just a stubble of in-coming hair, the feeling is wonderful. It is also noisy, a kind of fluttery-buzzing sound as heard from inside my head.

8.      Taste buds completely screwed up. Almost everything tastes terrible. It is hard to describe the character of the distaste. My mouth is covered with a gummy metallic tasting coating, and when I eat something this gets intensified with saliva and makes the food unpalatable. As a result my diet is mainly liquid – protein-fortified milkshakes and Glucerna (a high protein drink like ensure, but less sweet) – except for cheerios which I can eat if I let it get real soggy. It is hard to get enough calories just from the drinks, so I’ve lost almost 20 pounds since April. I’m told that this issue will slowly resolve itself; there is nothing special to do about it.

9.      Rigors (severe shaking with a fever spike and chills). This only happened once in April, but is really a terrible feeling.

10.  Attached to IV pole day-after-day. My IV pole is named Pola. She’s been very helpful, but it is time to say good-bye.

11.  Bone marrow biopsies. The first one was very painful, but tolerable. Then Janet (my sister-in-law, Marcia's sister) gave me a guided meditation to control pain and what a difference that made.

12.  Blood transfusions to raise hemoglobin and platelets. I’ve had blood transfusions, of course, but never as every other day occurrences. Now it seems this may be over since my new hematopoietic stem cells seem to be producing plenty of platelets – they are now at a normal level! – and even red blood cells. So, no more transfusions, for a while anyway.

13.  Showers beginning with a press & seal wrap and ending with sticky CHG wipes. I take a shower here almost every night. In preparation, my PICC line arm needs to be wrapped to prevent water getting on the PICC line insertion point dressing. Wrapping consists of three layers of press & seal (sort of a sticky saranwrap), and tape at the wrists and upper arms and along the seam of the wrap). After the shower I have to be wiped down with anti-bacterial wipes that leave a slightly sticky residue. The shower here is lovely, but these book-ends make it a chore rather than a pleasure.

14.  Not going outside for weeks and weeks. I would have thought this would have been annoying, but it hasn’t been. I have been happy just staying in my nest in CFAC.

15.  Vitals every four hours and orthostatic vitals (lying down then standing up) once a day. I guess it is standard operating procedure in hospitals to take Blood pressure, oxygenation monitor on finger, and temperature every four hours. I don’t mind much, even in the middle of the night. Generally the nurses here take my midnight vitals at 11 and my 4a.m. vitals at 5:30, so my sleep isn’t too disrupted by that.

16.  Waves of dark emotional intensity that hit suddenly without always any obvious immediate trigger. This has been one of the most unsettling experiences for me. This usually happens when I am physically depleted, but not always. I describe the experience as being hit with an intense wave of dark emotions, not as a gradual build up or slide into sad feelings, but as engulfing, overwhelming feelings. As I experience this, there is no obvious trigger or focus, but Marcia feels that there often is some kind of trigger. Yesterday, for example, I ordered what was described as roasted zucchini and squash, thinking that this would be easy to eat. It turned out to be pretty heavily seasoned, and when I smelled it I knew I couldn’t eat it, and I burst into tears, but was also filled with these intense dark emotions, emotions filled with grief and despair. This generally passes quickly; it doesn’t settle in. But it always leaves me unsettled. It is not surprising, of course, that someone with AML would have dark thoughts and despairing emotions. What is new to me is being abruptly slammed with such feelings.

17.  Ten weeks, 24/7, with Marcia in one room. I have never spent 10 weeks, 24 hours a day, with Marcia in a cozy room together (except for a very few days when Marcia went to Madison for the day). It has been wonderful, totally wonderful. We’ve been together 53 years – we met on a blind date in late October, 1965 – and married 47. If I had been asked before I was sick if Marcia would have been this wonderful, I would have said yes, but I wouldn’t have fully, deeply, understood what that meant. Now I do.


 

 

 

Journal entry by Erik Olin Wright

1. The Art of Phlebotomy
For the past three weeks or so I have had a blood draw every 2-3 days via a direct poke rather than via my PICC line. This was needed to test the level of the key anti-rejection drug in my blood. It tends to concentrate around the PICC line so you can't get an accurate reading from blood taken via the line. No one likes shots. I think that even when you are used to them and get blood draws regularly, there is still a bit of apprehension when the phlebotomist enters the room with the paraphernalia of the trade. At Froedtert Hospital there is one phlebotomist, Etienne P. (I don't know his family name) who has such fantastic technique that when he arrives I greet him with pleasure and no dread. He's older than most people in his role -- in this 50s -- and I think from Haiti judging from his lovely accent. He explained to me how he does it: "It is all in the fingers." He shows me the motion of thumb and index finger touching at the tip and moving back and forth. "Most phlebotomists use their arm muscles to push in the needle. I tell my students that pushing a needle into a vein is like threading a needle -- you just use your fingers. I have them practice by threading a needle. They practice this outside of class to get the signals between the brain and the fingers re-enforced. You line up the needle with the vein and the thread it. And as soon as blood comes out, I stop." Today I literally did not know when he had done the procedure.

2. Strange, interesting dreams
My dreams from last night are quite vividly remembered. In the dreams I was writing short stories. I worked on three. I am used to writing in my sleep when I'm working on academic papers, but I don't remember writing short stories. I suppose this was stimulated by my tale of rugby neutrophils. I didn't finish any of the stories, but here are sketches of what they were about:

#1. Cheating at poker.
The setting
: The Old West, in a settled town probably in Colorado in the 1880s; in the parlor of a fairly fancy house.
The story: The family in the house were avid poker players and invited strangers to play with them on occasion. Pretty high stakes -- thousands of dollars a night. When they played just as a family they used a deck with marked cards so that Grandpa, who was a bit senile, could occasionally win. In the corners of the cards were tiny markings like AS for ace of spaces or 9D for nine of diamonds. They never used the marked cards when strangers were in the game; this was strictly for the low stakes nickel-dime poker they played with Grandpa.
       Well somehow the deck with marked cards was used one evening when a high stakes game was being played. The stranger was a professional poker player who went from town to town to clean out the locals. After loosing the first four or five hands he began to be suspicious and easily figured out what was going on. He then began holding his cards in a way that no one else could see the backs of the cards and won big. At the end of the night one of the family members accused him of cheating. [that's where the story ends in the dream].

#2 Victorian traveler.
 A wealthy Victorian-era British woman spends all of her time living on ships going from one port to another mainly in South Asia, Southeast Asia, an East Asia. She is an avid reader and spends all her time on board reading. To keep a good supply of books, she has a crate shipped from England waiting for her at every port. She is fluent in French, German, Italian. and Russian so that she will never run out of things to read. She arrives in Singapore, but there is no crate of books waiting for her, so she goes ashore to buy books and gets lost in the city and eventually kidnapped. [that's where the story stops]

#3 French inspector of small dams
The story takes place in the present. The first person narrator of the story is the Chief Inspector of Small Dams in France. He talks about his job and how wonderful it is inspect all of the small dams in France, some of which are centuries old. The narrator talks about how some very old dams no longer work -- they have no working flood gates -- and have basically just melded into the landscape. The narrator expresses concern because there has been an increase in dam failures, causing severe flooding. He is trying to figure out why this is happening. Meanwhile Loki (Norse trickster) and Hermes (Greek trickster) have teamed up to transform the countryside of France by mucking about with the small dams. They have a magical super-detailed map of France and when they put an x through a small dam, it freezes up or disappears completely causing floods and either creating new lakes or making lakes disappear. [That's as far as a got with the story.]

These really were stories I was writing in my dreaming last night. I have no idea what the subconscious roots for the three different themes might be.


3. What my new immune system is accomplishing
On October 23rd when I had my transplant, I had no white cells. An average person has somewhere around 50 billion white cells (around 8,000 per microliter; the average human body has about 5 liters of blood). About 50-60% of these are neutrophils, so let's say roughly 25,000,000,000. They live for only 5 hours. So, the new hematopoietic stem cells now constituting my bone marrow have to produce sufficient white blood cells to deal with a turnover of 25 billion every five hours. My current level of neutrophils is 250 per microliter, which would mean about 25 million neutrophils in my body. This needs to be increased 1000-fold to be in the middle of the normal range. It's all pretty amazing to me.

4. CNN, November 8, Milwaukee
After receiving a number of protests over the firing of our in-body reporter as reported yesterday and careful consideration, she has been rehired. The distinguished Colombian Sociologist Tatiana Alfonso made the most compelling argument: "Medical error in media reporting is a constant! Don't fire the reporter; enable her to learn science." We will create a science education program for all our reporters. Before we send her back into the field, we will also make sure this reporter understands the fundamentals of rugby so she can report on some of the rugby matches in the bone marrow.

Journal entry by Erik Olin Wright

I stayed up late watching the Wisconsin elections returns, which weren’t finalized until a bit after 1 a.m., so naturally I am a bit tired today. But this morning’s tiredness is the familiar day-after-election tiredness from not having quite enough sleep rather than the neutropenic deep fatigue of being sleepy because of lack of neutrophils. What a difference! Given that the Wisconsin results were so good, there is even something a little sweet about being a little tired. Today I have no trouble sitting up and writing and carrying out normal activities; with the neutropenic fatigue that just wasn’t possible. My ANC today is 120, triple what it was yesterday. And zero blasts, indicating that these neutrophils are very likely entirely from my new immune system. My platelets and red blood cells are also up without the aid of a transfusion, a sure sign of engraftment. So, on all fronts, I’m definitely on the road of recovery.

CNN Special Report, Milwaukee.
An attending physician at the Center for Advanced Care learned of the interview with a neutrophil yesterday and was shocked by the scientific errors, some of which call into question whether or not the interview actually took place. We feel obligated to correct the errors. The reporter has been fired.

1. Neutrophils only divide when they are still in the bone marrow, so the reporter's claim that his interview was interrupted by the neutrophil's cell division is absurd since the neutrophil was in the peripheral blood rather than in the marrow itself. Neutrophils divide in the marrow and then spill into the blood stream to do their work.

2. Once in the blood stream, neutrophils only live for about five hours during which time they are frenetically busy. It is therefore ridiculous for the neutrophil to talk about rugby practice. Of course there is no time for rugby practice, but there would also be no time for rugby. All rugby played by neutrophils occurs in the bone marrow, not the blood stream itself. This is a well-known fact. 

Journal entry by Erik Olin Wright

CNN, breaking news, Milwaukee
The numbers are in: neutrophils make their first appearance. There have been hints of neutrophils for several days as we have seen some monocytes floating about, since in normal times monocytes mature into neutrophils, but today is the day we have a positive number to report under the Absolute Neutrophil Count (aka "ANC," neutrophils per cubic millimeter): 40. There's still a long way to go until Erik will be declared no longer neutropenic -- 1,000 -- and a bit longer before he is in the normal range of 1500-8000. But it is a start. Once he is above 500 for two days in a row he can be discharged from the hospital, where he has been for over two months. Let's now go into the field where our in-body reporter is ready to interview one of these newly minted neutrophils.

Reporter: Tell me, what's it like being a brand new neutrophil in Erik's body?

Neutrophil: It's great. I'm feeling right at home here. It's nice to get out of the bone marrow and into circulation. The bone marrow was fine, but it's a bit claustrophobic. So, it's good to leave the nest, get out into the world and begin doing our job. Everyone's excited.

Reporter: There's only 40 of you per cubic millimeter. That must pose some big challenges.

Neutrophil: You're right about that. This poor boy has been without any neutrophils for a long time. We can tell that he's loaded down with antibiotics. They've done a good job -- I'm not knocking antibiotics -- but they really aren't a substitute for us. No way. I see that there is a lot of cleaning up for us to do. I have hardly any time for rugby practice, but I've got my priorities straight: protect this body from perils diverse. Uh-oh....I can't talk for a while

Reporter: What's up?

Neutrophil: I'm about to divide.

Reporter: This is quite amazing. We're right here on the front lines watching a young neutrophil divide. Yes, that's what's happening. It's pretty fast. 

Neutrophils (in unison): Ah, that's better. When you gotta go you gotta go.  

Reporter: I just have one other question: what's it like being female neutrophils in a male body? 

Neutrophils: Makes no difference to us. We gotta job to do and we do it. XX or XY, makes no difference. Well, we have to get back to work. Nice talking to you.

Reporter: Well there you have it. Young neutrophils, produced by the transplanted hematopoietic stem cells, working hard.

Journal entry by Erik Olin Wright

These are days forecast by the head of the bone marrow transplant team as being the worst. I have slept almost continuously for two three, getting up mainly to take pills, pile and piles of pills, giant pills, tiny pills, pills in lovely multicolored casings, stupid monsters pills that have rough chalky surfaces making them hard to swallow. Morning pills, noon pills, evening pills and pills in between. And the piece de resistance: the Lovenox shots I give myself in the belly. I have had mild nausea and headaches most of the time these past few days, and last night I had a fever. Aren't I pitiful? But the doctors say these maladies are entirely to be expected and nothing to worry about. So sleeping all the time is a good thing.

                                                                     *

As many of you probably already know, Devah Pager died two days ago. This is heart breaking for everyone who knew her.

Journal entry by Erik Olin Wright

The story of scrambled priorities of a bedraggled bone marrow transplant patient

The Cast of Characters
Erik: the patient
Marcia: the patient's very sensible, diligent CEO
The endocrinology team (ET): very smart doctors and fellows who know a lot about hormones

Wednesday, October 31.
Two members of the Endocrinology team, including the head, visit Erik's room. Erik tells them that it has been over 90 hours since his last dose of desmopressin to treat his diabetes insipidus. Everyone is delighted. "Doesn't this mean that the d.i. is gone?" Erik asks. "It looks that way," the ET head replies. "This deserves as case report," she adds. She decides to gather more specific data on the specific gravity of my urine and the presence of the Vasopressin hormone (the hormone missing in d.i.) in my blood. This is all very interesting. Erik is really into the idea of becoming a case report.

Thursday, November 1
The symptoms of diabetes insipidus slowly return. Erik is peeing every hour and a half to two hours. Erik is disappointed. The ET return. "Maybe this will resolve itself," they speculate. "Can you hold off on taking the desmopressin nasal spray?" "Sure," Erik eagerly replies. "I'll keep a pee log and we can see what the trend is." "Well check back tomorrow," says the ET team.
    Pee log: 8:25 a.m., 9:45, 10:42, 11:30, noon, 1:35, 2:40, 3:50, 4:50, 5:05, 6:25, 7:35, 8:45, 9:45 pm.
    Time for bed. Marcia: "Eriki, you really should take a dose of desmopressin to get a good night's sleep". Erik, "I'd rather keep going with the experiment. I'll talk about it with the ET tomorrow." So the Pee log continued: 11:20, 12:10, 1:45 a.m., 2:25, 3:35, 4:15, 5:45, 6:40, 7:20, 8:10, 8:50. Even with a bedside urinal, that is a lot of sleep disruption. In the morning Erik was exhausted. For some reason, he was surprised about this since the day before he had felt a bit more energetic. "Eriki, what do you expect? You were up every hour to pee." Erik relented and took a dose of desmopressin and fell right back to sleep. At 11 he went to his PT class. At noon he went back to sleep and slept until late afternoon when the nurse came in to give him a unit of red blood cells. When the ET came by they thought it was a good idea  Now he is reasonably peppy.
     The moral of the story: Listen to Marcia.

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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