Tried to sleep but couldn’t, despite having two ambiens in me. The air is very dry in here and they keep it so to minimize the risk of infection. No new symptoms, and in fact my temperature has been down to 98°. But I have all the old ones. I need to moisten my lips with petroleum jelly (manufactured in New Paltz, NY, where Mo and I had our first date – the Northern Light?) otherwise they’d stick together. I have to cough every five minutes or so. Trying to do less dilaudid – since I stated the other day I’ve become very itchy indeed, one of the side effects of the drug – a synthetic morphine. (Not sure if I wrote this already, but I am on a PCA where, within certain limits, I can self-administer the amount of pain medication I receive. My settings are a steady rate of 0.6 mg/hr, with extra shots of 0.5 mg allowed every 7 minutes. Sort of like ordering an espresso!). I am comfortable with my mouth open or closed – opening and closing it hurts my lips – but keeping it open means I dry out more quickly. Keeping it closed increases the amount of pain that I notice coming from the sores in the roof of my mouth and gums. I am, truth be told, a bit afraid to sleep since I wake up so disoriented.

On the positive side, my skin itch is much lessened as well as my bedsores. All the doctors and nurses and PCAs and other specialist staff continue to take excellent care of me here. Well, they forgot my ice cream on the dinner tray this afternoon, AGAIN! Paula took care of me and rustled some up later in the evening. Food tastes better and I’ve figured out what I like and don’t like.

I finished another exercise from “Drawing on the Right Side of the Brain.” This time of the square-rigged ship at the beginning of the Aubrey-Maturin books. This is the exercise where you copy a picture upside-down in an effort to trick the right brain stay out of it and focus on shapes, lines, and their relationship to other shapes and lines. The problem in this case is that the picture is intended as a left-brain illustration, since it names all the 21 sails – not that I know the names of all of them. I also could not stop myself from counting the gun-ports – thirteen on each side (well, on the larboard side, at least.) Towards the end, Rose came in to take my vitals and broke my concentration. When I got back into it I wanted to rush, and surprisingly this seemed to work better. I need a better picture, but not much around here.

Spent some time this afternoon fixing the links on my website and adding a few photos that I’d taken with my cell-phone. Maureen sent me a shot of the fireplace at home with stockings hung and the angels on the mantle. I have that as the wallpaper on my cell phone. Mo also sent a picture of the tree, strung with lights. Working on this stuff keeps my mind active and I don’t mind the pain so much and that means I don’t scratch so much.

When will all this go away? It’s hard to say. Dr. Sloan stopped by before leaving for the weekend and went through my hematology report. The report lists the results of tests that the lab performs on blood samples that the nurse draws daily through my portacath, every morning at 4 am. The report lists:

1) Test name. Some are obvious, for example WBC means White Blood Cell count, while others I will have to look up.

2) The actual quantitative result of the test

3) Whether the test is in the normal or abnormal range, or has changed significantly (over the last 24 hrs?)

4) The units of the measurement. WBC, for example, is measured in K/ul, which I read to mean 1000s per microliter.

For my 12/9/05 report, of the 22 tests conducted, 12 were flagged as abnormal. The key metric to look for, apparently, is WBC * POLY. When this exceed 0.5 my body will take over and clear up all my aches and pains within 24 hours. Currently, WBC = 0.23 K/ul, and POLY = 72%, so the magic metric is 0.166. Still a ways to go. I’ll start entering this in an Excel spreadsheet so I can track my progress. Measuring stuff is pretty much the same in medicine as it is in FAA Flight Standards.

Had a good night’s sleep. Got over my fear of sleeping by playing an Afrocelts CD (Volume 1, Sound Magic) followed by Seed. http://www.afrocelts.org/ Slid into blissful union with the music where it felt as if my friends were listening with me too. Slept until 4 am and woke not disoriented at all.

There’s a nice class of combinatorial problems that nurses solve every day, to do with the order in which drugs on the pole are fed in to me. As an example, my antifungal medication is in a D5W (dextrose) solution and has to be by itself; the others, in saline, can be in different orders.

My portacath has two lines that go directly into a reservoir that was inserted in my chest, located on the right side above the nipple and level with the armpit. The nurse has discretion, within the rules of drug interaction and delivering only those medications prescribed for me, for when to feed the medication and what other drugs to feed it with. Other constraints include the overall volume of liquid pumped into me, and, in the case of blood, my temperature – blood cannot be fed in you are running a fever since it independently causes your body temperature to rise a few degrees. There is a potential source of error here because of the wide range of solutions to the problem of how to administer the medication. It’s also potentially a time waster since the nurse may have to solve the problem many times over during the shift. In addition, it’s subject to interruption as the doctor may add, modify, or delete a medication order.

Another method of delivering medication is oral. For example, flagyl can be oral or IV. It is preferably given oral to reduce the space required on the pole. However, flagyl tastes extremely nasty and the first time I took it I threw up. For a few times after that I took it in gelcaps, which is where the nurse cuts up a pill and puts it in a gelatin capsule. The merest grain of flagyl on the outside of the capsule, left there by accident as a result of cutting up the pill in house, can still cause me to throw up. And this is what I did. Now I take flagyl by IV, which further reduces the amount of space on the pole.

Yet another method is injection. I get my G-CSF this way via a shot in the belly.

I have not counted the number of different medications and additives (potassium, magnesium, etc.) that I’m taking, but it’s a lot. For the chemo drugs alone, I’m taking 13 different drugs, which in some cases must be given both IV (intravenous) and IT (intrathecal, or direct into the spinal column). So, there are many ways to screw up, as well as very severe consequences in some cases if you overdose or omit the dose. [See James Reason, Beyond the organizational accident: the need for “error wisdom” on the frontline. Quality Safety Health Care 2004:13:28-33]

There is a reverse danger. If all decisions are automated, nurses may perceive that someone is trying to turn them into automatons. While I think there are, and will continue to be better and more sophisticated automated solutions for heath care delivery, we need to make sure that nurses don’t lose opportunities for patient interaction when they can check other less measurable aspects, such as the patient’s mood. [It is commonly held that 80% of all human communication is non-verbal]. Also, nurses take justifiable pride in their ability to solve problems of drug interaction and delivery, and pride in one’s work is a key attribute of a well functioning team

Temperature has remained in the 100s, dipping down to 99 at one time. This is all due to the secondary infection, which exhibits itself as a dry cough. The infection is not getting any worse and I have high hopes of it being overcome in a few more days. The excretion of the methotrexate is proceeding as planned. The bottom line is that my discharge home for a few days has been delayed. Mo already got her flu shot and Miranda will get her’s tomorrow, so we should be all set when I do get home.

Talked with Pat, the social worker, about the divisiveness of religion in the US these days. In his recent Atlantic Monthly article “Is God an Accident” (www.theatlantic.com/200512/god-accident) Paul Bloom points out that there are no significant differences between the US and Europe in the number of people that believe in God, or what they believe in. My great-grandmother, for example, lived in England and was a member of the Assemblies of God, which is, I understand, a fundamentalist church popular in the US. She apparently held that the pictures (movies in the US) were the work of the devil.

Although less extreme, as a child, I regularly attended and enjoyed church (Church of England. A former teacher remembers me attending Holy Communion daily in the small chapel in the school basement; this was in England, remember, where religion is, or was then, allowed in schools. I think that I did not keep this up for long. I may have done it for Lent, shortly before or after my confirmation. Also, this was 40 years ago.]

Today, church attendance in Europe is much lower than in the US. Why is this and does it matter?

I remember when first coming to Stow being asked if I would like to join a men’s group to study the bible. My response was, sure, if they didn’t mind having an atheist join them. The invitation was dropped.

I see many of my friends in their guestbook entries offer prayers. I’m sure that some of them don’t know that I’m an atheist, but that’s not the point – they are not. I do not find the offering of prayers at all offensive. You can even pray for my conversion if you will (unlikely) – but please don’t proselytize. In the reverse situation, if you were the one in hospital and I were the one signing the guestbook, it would be meaningless for me to pray to God for you. I would offer my deepest good wishes to you for support and recovery. Being an atheist does not mean that you become incapable of caring.

My problem with religion is when it becomes divisive.

One of the reasons, I think, why church attendance is less in the UK, at least, than in the US is because community also exists in the local pub culture. Having worked the vendage in France one year, I know that France also has its café culture. In the US we do not have anything like this spread throughout the country, but the US does have certain non-religious communities, such as soccer mums and school groups. It’s not the same, however. These communities are often tightly scheduled and have high demands on time; being a member of them can often feel more like a job than time-off. Also they are exclusive – you can’t be a member of a school group if you don’t have school age kids. What is needed is more opportunities for community (non-alcoholic included).

Mo and I and Miranda tried a few of the churches in the local area and settled, for a while, on an Episcopalian church, the Church of the Good Shepherd in Acton. It has a dynamic music director

[By the way – there’s great anagram pair in English: Episcopal:Pepsi Cola / Presbyterians:Britney Spears]

The problem was that the church made more and more demands on Mo’s time – there appeared to be no middle way. It’s difficult to avoid feelings of guilt when you turn down an invitation to play in the pageant, or help out in ushering.

Some of the mega-churches that I hear of down South have very sophisticated approaches to marketing and providing services to the community. All well and good, if that is what you want, but harmful if it competes with other communities – either national or international. It’s fine for the church to offer health care and services to the homeless, but that’s not its principal job, and if it means that government thinks it can skip providing these services then we have a problem.

Although an atheist, I see a lot of good in religion. Simon Blackburn, in his book “Being Good – A Short Introduction to Ethics” does a fine job at dismantling the traditional religious explanations for ethics (is something ethical because God says it is, or does God say it’s ethical because it is?). Blackburn then goes on to talk about Benthamism and Utilitarianism, which provides a much stronger argument for ethical behavior – but it still does not explain Mother Teresa.

Snowing today – 10 inches expected in Stow so Maureen cannot come in. The parent/teacher conferences were canceled as well. I am pretty much insulated from all of this. I can see thin snow falling diagonally from right to left at a 45° angle. My window is largely obscured by the huge get-well card from Miranda’s 6^th grade classmates. Surrounding them on three sides are 12 get-well cards from friends and relatives. At the top is the hand-turkey that Miranda made for me when I was first admitted. It brightens the room up a bit, but I find myself craving visual stimulation. For the first ten days I had signed up for the extended set of TV channels at $5 a day, but I found myself watching it less and less, till I only watched it meal times for distraction. The rest of the time it quickly grew annoying with the endless repetition of news stories, in the vain hope, apparently, that repetition could bring about penetration. The local channel, WBZ is also free, as are two Spanish stations and two public TV stations, although one of them seems to be restricted to showing Andre Rieu concerts.

My room is on the 5^th floor. Outside I see two brick/glass buildings and miscellaneous ductwork. If I walk to the window I see the bridge that links Dana Farber to Brigham & Women’s, with hospital staff walking across. You can tell doctors by their white coats and porters by their blue ones. Under the bridge I see the street and what appears to be a parking garage. I see the occasional taxi drive slowly by, and pedestrians trudging through the slush, head down and wrapped up.

A rough night where my temperature was up over 100 for a bit and I wondered where it was going to stop. A lot of mouth pain. I did get a lot of sleep however. I could not focus on reading or even listening to the radio. I confirmed with Dr. S this morning that the new IV antibiotics they have me on are going to delay my going home. They have to stabilize me before letting me go. Both Dr. S and Dr. J confirm that I am doing very well in this treatment – touch wood when you write that – so I am obviously encouraged. Handling expectations of success and failure is going to be crucial during this episode.

Mo and I had a long talk with Dr. J yesterday, about my condition and life in general. I like him – I wonder if I talk too much though – I’ve become quite the gossip while laid up here. I am sensitive that my observations about hazards and risks in medicine could be taken the wrong way, to mean that one associates blame with them. I’m not, as most FAA inspectors could tell you. Read James Reason. (By the way, I had heard that he had moved on from aviation safety to medical safety, but I have not seen anything published recently. Can anyone tell me what he’s up to?) The notions of assignment of blame are hard to shake, as is the domino theory of accidents. I see these notions used daily, by politicians, and, of course, in litigation. It seems as if we are pre-wired to the need to assign meaning and cause and responsibility for every adverse event. We hardly ever do this for favorable events. It seems to me that one must allow that some things happen for no reason at all. Saying that does not preclude looking for causes and factors, but some things happen for no reason whatever. Perhaps Burkitt Lymphoma is one such event. It is interesting to study the disease in depth and to understand the mechanisms involved, but at some level surely one must that it happened at random.

As my mother used to say when I would whine “It’s not fair!” “Well, life’s not fair!” It is only recently in the last few years that I have begun to understand this. Not sure where she got it from – perhaps from living through the war and cast off at an early age to live with her grandmother.

The other side of the coin, of course, is gratitude. I think that Thanksgiving is perhaps one of the best of America’s many good ideas. A purely secular holiday that presumably has its origins in the harvest festival. I am prodigiously grateful for the opportunity to take a sabbatical and write this blog. Something I’ve wanted to do for a long time.

Another thing that I’m grateful for is the way that the Stow community has rallied to support Mo and Miranda. Martha has been walking and taking care of Diggory (our wheaten terrier) and this allows Mo to visit me every day. Kathy, Lynn, and Mary, to mention but a few, have been bringing in cooked meals to Bradley Lane. The school has been wonderful supporting Miranda. I have, up on my window, a huge homemade get well card with good wishes from all the children in Miranda’s 6^th grade at Hale.