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.

Had a shower this morning. Glorious! Very out of breath though and am now receiving platelet transfusion.

Mo and Miranda are here and just went to get something to eat. Miranda is proudly wearing an “I love (heart) my Dad” t-shirt. We took a walk around the ward and I showed her the layout and what the various parts of the ward were for.

Mary G. bought me some note cards for me to send out to some of the folks that were involved in my early diagnosis and I plan to send them out as I can.

/More information on Burkitt Lymphoma can be found by Googling it. Some of the best links are in the links section of this blog, as are details on the particular treatment program that I’m undergoing at Dana-Farber (CODOX-M, IVAC)/

Today will be another day off the chemicals and I must build up my strength. Somewhat nervous in advance of Monday when I will again get vincristine, and methotrexate both intravenously (IV) and intrathecally (IT). We’ll see how I do. Then I get to recuperate again with healthy doses of leucovarin to counteract the methotrexate. Per the schedule, I get to go home for a few days beginning day 14 (December 9). I rest up and when ready I come back for the biggest broadside yet when I move to IVAC. (The current regimen is CODOX-M). You could liken this to an 1800’s naval battle, with IVAC and CODOX-M wearing and throwing huge weights of metal at the enemy ship Lymphoma. I hope their aim is good and they hit the right things because I’m also on that ship.

My mouth continues to be very sore, but twice now over the last two days I’ve gotten a tingle in it, reminiscent of the earliest sign of the disease, which leads me to hope that it will eventually get back to normal. I wish, of course, that I had immediately reported the original tingling in the jaw to my GP, but I also had not recognized the significance of the night sweats. At any rate, I am sure that most GPs are not equipped to recognize the symptoms of this particular lymphoma. During my admission he finally realized that my cranial nerves had been affected, but thought perhaps that I had had a stroke.

Had a good visit with Mo yesterday. She is looking tired but beautiful. She got her walk with Diggory yesterday, with Martha and Iona too. Martha lent me some books that I have not started since I am now on to “The Fortune of War” in the Aubrey-Maturin series.

Grandma and Granpa visited Bradley Lane yesterday and brought a foosball machine. I talked to both Norm and Gerry on the cell phone. They are staying over night. It is times like these that help families grow.

I have pretty much mastered the cell phone [Motorola e815] and added a bunch of sites to my mobile web favorites. The one site that Verizon doesn’t list that everyone should have is the BBC site [www.bbb.co.uk], which works great on this phone. I’ve also got VCAST and spent time yesterday watching segments from “The Daily Show” and the “Colbert Report.” I love the feature where you can rotate the picture 90 degrees and can watch it like a mini-TV. Of course, I’ve got the phone fully loaded, whereas Mo doesn’t. I guess I was always a little scared of cell phones before, because they loaded them up with features that I didn’t know how to use. Input is still clunky and non-standard among the various apps.

Miranda, of course, still wants her own cell phone, but I think we are right to continue to deny it to her. She’ll get one in a couple of years, by which time it’ll be essential, much as a desktop is essential today for doing research and writing papers. Give her one today and she’d be playing too much texting her friends. Better to develop social community face-to-face.

Slow day to day. Feeling a lot better but also itching. I reported this earlier to the night nurse and she thought it might be a side-effect of the dilaudid that I took earlier for a headache (gave me mild hallucinations which music cures.) Took some time to read over the drug fact sheets and what they do and what side effects to look out for. It turns out that the itchiness is a possible side effect of the G-CSF. The day nurse stopped by and will report it to Dr. C.

The whole topic of system safety in medicine is, of course, very interesting to me as a devotee of James Reason and my work with FAA Flight Standards. There are clearly zillions of procedures for doing things, from the simplest procedures of the porters calling for elevators and doing pick-up; thru the slightly more complicated procedure of taking vital signs; up to the ordering and dispensation of drugs. Many of these procedures require placarding, i.e., instructions in English that must be followed, including the matching of the patient ID tag before executing them. This particular one is an easy one to omit. Other procedures, it appears, could be executed incorrectly, such as the taking of vital signs; obviously those executing those procedures need to be trained. Patients and visitors must also follow procedures and are less easy to train.

The role of the hospital administrator does not appear to cover the design and establishment of procedures, or the internal overview of them, so I wonder who does it? Who, in the hospital, has the system overview for safety?

Obviously the patient himself has a role here, to educate himself on what looks right and wrong. That thought, actually, was what prompted me to read over the drug fact sheets earlier today.

Some of the hazards are mitigated by physical design. For how the tubes connect and for the color-coding of the various blood vials. But here again this opens the door to human error. One of my daily blood samples has to be in a tube with a light green top, but when I asked the nurse what would happen if you developed poor color vision she didn’t know. “I suppose you can’t be color blind.” There’s obviously a lot of safety designed into the more sophisticated items, such as the pumps and the Alaris computer that delivers the drugs and saline solutions through my porta-cath. Even less sophisticated items have safety designed in, such as the pole with its 5 wheels that is probably – haven’t tried it – almost impossible to topple over.

Another thing I have not figured out yet is, who is responsible for oversight of the safety procedures? What are the roles of the hospital, the state, and the federal government in this regard?