On-going problems with nutrition, but nurses are taking more care too. Had ice-cream frappe at lunchtime.

Problems with dilaudid: vision blurriness of vision and mild pain with loud noises (not actually problems, but inconvenient), auditory hallucination. Rate is 0.7 mg/hr with clicker that I can use to deliver 05 shots every 7 minutes. But relying more on clicking to deliver extra shots reduces the time that I can do l-brain things, and r-brain things that require concentration. I write in the green record book first which makes it easier to capture events and thoughts promptly.

Read some survivor stories at www.burkitts.org¹. What stuck me was the length of time needed for the treatment. Were more than six months. Also, the wide variety of ways in which the lymphoma exhibits itself in the early stages. Maureen entered the data from my hemo report in the spreadsheet. Of the 22 different tests, 20 have numeric values. I have it set up so that I can see them over time, each on their own tab, with the thresholds for the test (min, max). The purpose is so that I can whether I traveling in the right direction. So far, I’m not, but as I said earlier, I also need to control my own expectation. If all goes as normal, I should reach my nadir by Thurs/Fri this week, and my counts should start moving up.

Got Colm to list for me all the oral meds that I’m supposed to be taking. Not so much that I’m then able to check up on the nurses, but because I want to be able to time my naps around them as much as possible. I have enough problems without also having to deal with someone waking you up to take a med! During the day. if I see that I haven’t received a med that I’m supposed to get, then they may be running late. It’s had to tell what’s going in the ward because I have a private room where the door has to be kept closed all the time. If they haven’t delivered the med after a reasonable period of time then perhaps the nurse needs reminding.

Had a great game of Uno yesterday when Mo and Miranda came in. With three people you really have to concentrate to see which direction the game is going. I’m sure we got it wrong several times. It was the best of four. Mo, Miranda, I each won one hand, followed by a protracted round when we went through the entire deck twice. Eventually, Miranda won. Short visits are good, because even if I’m feeling bad, I can keep I together for a while. Yesterday I felt great, and the memory of it has great sentimental value.

Mo came by herself today since I could barely talk and was feeling really shitty. We put Miranda on speaker phone and she practiced her three songs: ‘Reggae Vibrations”, “10^th Planet”, and “I Want to Hold Your Hand.” She’s really coming on with accuracy and keeping in time. Still needs to work on tone production.

Mo also brought some more CDs. Vision is getting a little blurry so will sign off to take a nap. (They’ll probably pick this time to do a chest x-ray.) Don’t know if they’ll do it in the room or wheel me down there.

1. This site is no longer active ↩︎

Talked with the doctors about my auditory hallucinations brought about by usage of dilaudid. Not unexpected or particularly unpleasant, but not what is desired since the amount of painkiller that I can take and not space out or sink into low state where I don’t care about anything anymore. They gave me a pill that lets me take a higher dosage and allowed me to spend a relatively pain-free night, pain perhaps 3 on a scale of 1 to 10. This 1-10 scale is a scale that every one uses and is very subjective. Then, this morning, Dennis called. I said hang-on and hoisted myself up in bed to turn on the light, and I realized I did not have a cell phone in my hand. I had had another hallucination.

[1:00 pm]

Mo’s here. Just took a shower and Lisa is hooking me back to the IV. Voice very harsh – I sound like Don Corleone.

Coughing continues to be a problem for me. The Teflon pearl seems to help a bit. Trying to get enough dilaudid in me so that the pain is reduced, but would prefer that cough is reduced, but I would prefer that the cough go away forever. Appetite continues mediocre and threw-up. I’m left with a cough. Lisa is going to get me a patch that will dry me up. Not sure that thus will do anything, but I’m willing to try.

Drank the frappe and Boston cream pie. I do not have the taste for anything salty. I am preparing a stash of muffins and Boost that I can order that I can eat later.

Temp is high so I can’t have any blood. Will try to get some sleep.

Falling behind on posting the blog entries. The last posting was day 15 and it is now day 17. I am in a lot of pain and need to be able to take a lot of naps.

I am making a list of what works and what doesn’t work.

Drug Name	Period	# of pills	Purpose
Teflon pearl	3 daily	1	Cough
Saline mist solution	4	Squeeze	Keep mucous membrane soft.
Nystatin	4	sufficient	Mouthwash (gentle)
Alkalol	4	Sufficient	Mouthwash (gentle)
Dyproxa			Reduce effects of pain.
Dilaudid			Control pain
Nexium	2	Three times a day.

Also, have not updated the hemo report spreadsheet actuals from last night (and printed today.)

Will turn in now. Waiting for my temperature to drop so they can give me my blood. The temperature needs to be in a certain range since high temperature makes undesirable side effects of getting blood hard to identify.

Dr. S and J said that the blast # should be zero, because these are the cancerous cells. Original counts of cell are by machine, so they looked at them personally under the microscope and determined that they did not appear cancerous. So this begs the question, if they are not cancerous and not any of the reported types, what are they?

[4:30 pm]

More system safety.

• Overloading poles with bags of meds to be delivered later makes them unstable. Stability is one of the driving design factors of the pole and it’s being overridden. This is just a single instance of a well-known engineering problem. If you build a system with certain passive controls built in, people may be tempted to take advantage of them. You see this in the Big Dig too. The Big Dig was built to allow better traffic flow through Boston. While this may have happened on some routes, it seems to me that the main effect on others has been merely to increase the number of cars on the road and the congestion has remained the same. I’m sure there are numerous examples from aviation but I can’t think of them now.
  
• Variation between hospital staff and equipment and what is measured and how. I had my temperature taken by two different people at two different locations of the body. There are four of them, mouth, left axillary, right axillary, and a fourth that I won’t name – suffice it to say that it has a different color sheath, red as opposed to blue used for the other three spots. I sure hope the person taking my vitals is not color blind! Theoretically you should be able to add one degree to the axillary temperature to yield the oral temperature, but this just that, a rule of thumb, not a real rule. There’s also no reason that both axillary temperatures need be the same. Anyway, as I said, I got three different temperature readings all taken at the same time: 98.5, 99.8, and 94.8). These values show considerable variance. The number entered in the book was the median. The reason that the axillary temperature was taken in the first place was because it was thought that the mouth temp could be abnormally high because of the local hot spot.

Good night’s sleep and woke refreshed. Feel much better and stable. Before I went to bed last night I scanned my emails from the cell phone. It seems that the CSC laptop is coming. Also, from DPT, a newsletter giving me the scoop on the latest Volpe happenings, including JNH’s announcement that he is moving on from the Volpe Center (I can’t imagine that he’s going to stop work altogether – wake vortex is so much part of his life.) Also John LoBue’s sudden departure (verrry interrresting…)

[GROSS ALERT BEGIN]

Sitting up in bed as I write this. I have been vomiting in periods since before the night shift change. Several hours. Vomiting is not the real word, since what I’m vomiting is mucous. Began with some disorienting hallucinations – I knew where I was but was like a bizzarro world version of B&W, as if the current world weren’t bizarre enough. I had an intense urge to vomit. When I do vomit, no food comes up, just mucous, inordinate amounts of it. I lost track of time, but seemed to have slowed down a bit. Mouth is still mucousy and I periodically clean my tongue with the use of a tissue. Sounds disgusting, so it is. It feels as if the fever is breaking, although when I write fever, it’s not something that corresponds to the temperature that they measure when they are doing my vital signs. A sign that I am going to vomit is when I lie down and breathe slowly and get a crackle, if I make a sound I can make it resonate with the sputtering. [Must be that Tuvan throat singing I wrote about the other day.] I sit up abruptly and vomit into whatever I’m using, right now a basin, and my vocalization gets louder. Finally, I’m left with a steady drip of mucous from my mouth, which I will help by grabbing it with a tissue and pulling it out.

[GROSS ALERT END]

Haven’t had a vomiting session in the last half hour and hope that this may be the end of it. I am going to try to clean my self up a bit and see how I feel when I move around.

There, that’s better. It’s 7:52 and I’m writing this in the brief moment of the day when the sun shines into this room. The hospital and adjacent buildings form a well. Three of the buildings are only a few stories higher than this one, but the other side is 40 floors at least.

Tidied up a bit and washed my face which now has a fixed expression; mouth open and lips slightly further apart on the right than on the left.

[GROSS ALERT BEGIN]

Dr. S just stopped by to share the news from my latest hemo report. Not all the results are in, but enough to show that I am past my nadir and on my way up. The symptoms I described in yesterday’s entry are those of mucositis. Looking forward to clawing my way back up and feeling better so I can go home.

Read through the Leukemia and Lymphoma Society’s booklet “Understanding Drug Therapy and Managing Side Effects. I was struck by how unemotional and cold the section “Social and Emotional Effects of Drug Therapy” was. Why should it matter, and what is this emotion thing anyway?

The answers are found, I think, in the left brain/right brain thing.

What is it emotion? For me, good emotions are the pleasure that I get from Mo and Miranda and the wider family. Looking at art and listening to music. Friends. Touch. I think of my walks with Diggory in the town forest, enjoying the current season, whatever it may be. The forest has a special but restrained beauty to me, because I also have in my head what it looked like last month, whether it be seeing the first lady-slipper of the year, or because the first fall of pine needles laid a golden carpet that will last only for a few days before dulling.

In my blog entry earlier [day 13] on atheism and prayer, I referenced Paul Bloom’s article in the Atlantic Monthly. His thesis is that belief in God comes from an overshoot of the perception of a mind/body split. We are pre-wired to be dualists. Once you accept that the spirit (or soul) is different from the physical body then it’s but a short step to God, the creation, and the afterlife.

Scientists broadly reject these three notions, or at least, reject them as science. Theists allow for the existence of all three beliefs (God, Creation, and the Afterlife). There are eight different possible combinations of beliefs and it would be interesting to find out the number of folks that fall into each bucket. Let’s call the following the GCA model. (It’s probably not original but I have not come across it in this way before – and not that I’ve been looking particularly hard.

	GOD	CREATION	AFTERLIFE
YES	a	b	c
NO	d	e	f

Intelligent Design folks, for example, would hold that condition d, b, any is possible, i.e., Creation by an agent other than God. I have met people who believe that condition d, e, c is possible, i.e., there is no God or Creation, but there is some form of Afterlife. And I think that Orthodox Judaism may hold that conditions a and b are true, but not c.

But this model is all red-herring. I think the questions surrounding warmth and caring have to do with the different roles of the left-brain and right brain. It would be interesting to integrate the L/R brain model with the GCA model, but this may prove difficult since the L/R brain model is not a yes/no thing.

I wrote earlier [day 11] about how the mind is involved in the healing process, and in particular, in the reduction of medical error. This is obviously a left-brain thing. When most folks are talking about mind they are talking about a right-brain thing. Monica wrote me afterward about the role of music therapy. She’s right. In my eagerness to play up the rational aspects of mind in the healing process, I downplayed the role of faith and omitted any reference to the role of creativity. It seems a little odd to label creativity as a science, even though recent advances in understanding it have come from scientific research. Betty Edwards talks about research into the corpus callosum and its role in communicating between the left and right hemispheres, and this is a book published in 1970. I would suspect that there have been other advances made since.

Science is often thought of as being analytic, with little or no role for creativity. The biographies of influential scientists show that this is far from true. One of my favorites is Dick Feynman, familiar to physics student for his three classic books, “The Feynman Lectures on Physics.” Non physicists know him better as the member of the Rogers Commission investigating the space shuttle Challenger accident, who, during the hearings on Capitol Hill immersed an O-ring in a cup of iced-water and showed how it became less flexible. He had widespread and curious creative passions, such as his love for Tuvan throat singing. Top doctors are often accomplished in playing classical music. But most of us are not top scientists, and the population at large views science as having no heart.

I don’t know much about music therapy, but I find in my present condition that listening to music helps me in various ways. First, it helps to center me when my mind starts to wander for whatever reason. Secondly, and classical music in its broadest sense, is particularly useful here. Following the story of the music exercises the mind.

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