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.

Dr. S is concerned about my fever – 99.3 on two successive readings – since I have zero resistance right now. They wheeled in a portable X-ray machine and took a plate. I feel good, however. Appetite is good as well as thirst – three days in a row now.

Went through my address books that Rick sent to Maureen and contracted a few folks that I had phone numbers for, but have not talked to for years. I called, I guess, because I have valued them all as friends and have learned from them. Also, I figure they’d be interested in the blog. There are so many names that I don’t have addresses.

For those of you reading this, the blog is the best way to learn of my condition. Send me email, by all means, at [email protected], but I need to manage my correspondence. And please, also, no large attachments since I’m on dial-up.

As I wrote earlier, my speech has been affected, and because of dry-mouth and soreness it will sometimes be difficult to talk. Finally, the blog lets me correspond at my own speed, which varies from day-to-day.

Tonight, well tomorrow really at 2 am, I get my antidote, the leucovorin, to counter the methotrexate, as well as another G-CSF to bring my white blood cell count up.

Finished the “Fortune of War.” The last part, about Jack and Steven’s adventures in Boston are one of my favorite episodes.

her religions too, though I do not have experience here. This is also true of non-religious medicine such as yoga, homeopathy, and macrobiotics, to the extent that they attempt to substitute for mainstream medicine, rather than complement it. This is not to say that mainstream medicine is always correct – after all it is science and therefore falsifiable – whereas the others appear to me to lack the crucial characteristic of falsifiability.

[later]

There may be some permanent, or very slowly healing nerve damage, including partial paralysis of my lower lip and deviation of the tongue. Because I am now so careful in enunciating my words it appears that my accent has reverted to being yet more British. I may also need speech therapy to deal with this nerve damage.

Met with Dr. S. Sounds like the IT methotexrate is scheduled first and I get the methotexrate IV later when I start peeing alkaline. They give me a large dose, based on my skin area — calculated from height and weight – so that it can penetrate the brain and kill the cancer cells up there. It’s a pretty severe poison and they have to time it all so that they can give me the antidote (leucovarin) in time.

[later]

A crack appearing in system safety. It appears I’ve lost about 20 pounds over the last 5-6 days. From about 180 when admitted, then up to 190, and now down to 170. My weight was stable for a while but was not monitored daily. Of course, I had no appetite for a while, food tasted really bad, and it was physically difficult to eat. I’ve been chugging Boost, but apparently not enough. And then, this morning, when I finally had an appetite, they didn’t deliver the apple muffin that I’d ordered as part of breakfast. I did suck down the cream of wheat however and the over cooked boiled egg and toast. Biggest breakfast I’ve had for a while. It turns out that the reason that they didn’t deliver the muffin was because they were out pf them. No donuts or beignets or brioches or croissants to be had anywhere. God, I could die for a donut — a nice jam-filled donut sprinkled with powdered sugar! So here I am, crunching Graham crackers and chugging Boost again. And yes, dear reader, I did discuss this with my nurse (Ana) and Dr. S.

[later]

Reading Watts Humphrey’s article in this month’s Crosstalk “Acquiring Software Quality.¹” Obviously this project meets Quality Principle No. 1. In fact, there are lots of parallels with this project. The article also reminded me, yet again, of the importance of having developers who take pride in their work [Quality Principle No. 6]. I am really eager to do the PSP. Watts makes a cogent argument for the connection between team pride and product quality. Of course, everyone knows this, but it is to measure the returns.

[5:40 pm]

Talked with Mo about eating problems and concerns and asked her to talk with the dietician tomorrow. Lots of good hints in the NIH National Cancer Institute booklet “Eating Hints for Cancer Patients.” Enough bitching – they’ve just brought my food!

[later]

Back to system safety, in general, as well as in respect to diet. Clearly the patient has an important role to play. Education programs are also part of cancer treatment. I’m nature inquisitive and talk a lot with the doctors, nurses, and nurse’s aids about what’s going on. Some of the above are very good at educating me, but not all. Initially I came in here knowing very little about hospitals (see the day 4 entry) and obviously very little about chemotherapy. I am learning day-by-day.

[later]

Had a long talk with Allison about food in general, and my concerns. She admits that the catering is not all it could be. We also touched on my theory why most people, not born to it, dislike vegemite / marmite – but of course Aunt Julia disproves this theory!

1. Article no longer posted, but see: PSP: A Self-Improvement Process for Software Engineers | CMU Software Engineering Institute ↩︎

A good night. Had my dilaudid and listened to Haydn symphonies 88-92 followed by a light but restful sleep. It’s best if I keep my mouth and tongue immobile. I find I’m looking forward to the next movement of chemo today because I know it’s followed by intermission.