This being the day after my big Methotrexate infusion I was eagerly awaiting the results of the testing of the blood draw from the night before. A level lower than 1.0 (units unknown) would mean that I would be allowed to go home. Of course, this being the weekend the lab over at Children’s Hospital was closed for the night shift. Then at 9 am Marianne my nurse brought me the news that the machine for testing methotrexate levels was broken. It seems they got it fixed in short order, however, because I got the news by 11:30 that the level was 0.44, and they could send me home with a scrip (prescription) for leucovorin. Mo and Miranda picked me up and we dropped off the scrip at the CVS drive-thru pharmacy in Maynard. Here’s where an error entered into the process. I have no idea what CVS thought they were doing, but they provided way too many pills. I called the hospital back to confirm the dosage. 30 mg every six hours precisely for the next 24 hours. Since I’d already had a dose at the hospital, I was expecting a total of 90 mg – and since each pill is 5 mg, that should have been a total of 18 pills. Instead they gave me 72 pills. The instructions on the CVS container had it right about “6 tablets every 6 hours,” but they missed the fact that this was only for a 24 hours. The defense against this potential overdose was the discussion I’d had with the nurse back at the hospital, plus the overall schedule of medications that Dr. Jacobsen had provided me with back in November. Not to make a fuss, but I’ll give CVS a call on Monday and let them know of the mistake – and ask them what to do with the excess medication!

While in hospital, my room was next to that of an elderly woman. I was only in for two days, but I could hear through the walls that she was obviously in some distress on both evenings that I was there. I asked one of my nurses about this, and she referred to her as a “sundowner.” I’d never heard this term before, but a quick search on Google (ignoring the derogatory definition on Wikipedia) reveals that this is a well known condition, otherwise known as “Sundowner’s Syndrome,” where a person with neurological impairment becomes confused as the sun goes down. Now, I assume that the term is not a precise medical definition, but the distress was clearly real, and it brings to mind yet again the degree of undeserved misery there is in this world. To be a nurse or a doctor working in a cancer ward you are faced with this every day. I suppose you get used to it and just do what you can to alleviate the misery.

Here at B&W they have a series of color codes that they announce over the speaker system. This afternoon, as I was dozing, they announced a code “grey,” which lasted about twenty minutes, followed by a code “blue.” The codes refer to various levels of patient emergency. Immediately following the announcement of the code the level of activity in the ward increases, but I’d never really figured out what the codes meant and I’d never asked. I was reluctant to ask, I think, because I knew that there was a fellow patient involved, and I didn’t like to pry, but my curiosity got the better of me so I asked Dr. Zuckerman and my nurse Eileen. After all – you’re in a hospital and there aren’t a lot of secrets in a hospital.

It turns out that “grey” is security – perhaps a family or patient has gotten into an argument with the nurse, or a patient has wandered off. “Blue” is serious. It means that a patient is in crisis and calls for the immediate assembly of the team. This afternoon when it was called it was accompanied by a call for some piece of medical equipment that I didn’t recognize. Here are some of the other codes that I remember:

• Red: Fire in the building.
• White: Bomb Threat.
• Pink: Possible baby abduction IBaby girls only?). I’ve never heard this, of course, but apparently babies over Children’s get little transponder bracelets, like the one that Martha Stewart had to wear, that trigger automatically when they leave the area.
• Amber: Local disaster – expect an increase in the number of patients. Reminiscent of the helicopters flying in on MASH.

There’s also a green, which is also bad, but I forget exactly what it is.

Chemotherapy has to be one of the simplest treatments there is. I mean, there’s no cutting involved and the only piece of equipment needed is an IV pump. OK, sometimes you have the intrathecal which is a bit tricky, but for the most part a patient could administer it himself/herself. OK, so you’ve got to mix the chemo up correctly: too much boomslang skin in the potion and you’re a gonner! You also have to monitor the blood and urine, and patient physical condition to check what to do next, but I can foresee the day when more of the treatment and process is automated than at present. What this means for the design of system safety is that chemo ought to be one of those treatments that can be made very safe.

Reading the IOM report “To Err is Human” (2000) this morning I was struck by the fact that the statistics on the number of patient deaths resulting from medical error – estimated as high as 98,000 per year in the US in one study – were not further broken down further. Some further studies were cited, focusing on narrower areas, but there is obviously a lot of work still to be done on classifying diseases and treatments, and developing taxonomies of root causes of medical error. Over in the aviation safety domain, we engineers rail at the difficulty of developing defining precise hierarchies of aircraft and engine make/model/series, and developing useful taxonomies of systems and root causes of error. Aviation has made more progress in classifying its domain than medicine has, and I’m not altogether sure that this is solely because medicine is vastly older and more complex than aviation; I suspect also that aviation engineers are by nature more ready to measure their world. Aviation has always been an engineering discipline: medicine is still frequently referred to as an art. We need both engineering and art.

[later]

They’ve just called another code blue, this time with a location in the hospital lobby. It’s been a busy afternoon. I suppose the color blue was chosen deliberately because it’s a neutral color but once you’re in the know, it doesn’t disguise anything; it means another life in crisis. Sitting here is hospital after several days at home, I am brought back to the realization of how much misery there is in this world, and it makes me realize how I value life.

Back at Dana Farber, in the infusion ward awaiting the last few injections and infusions of the CODOX-M treatment, it includes: more Vincristine (the stuff that makes my hands and feet tingle), and 3000 mg/m^2 of Methotrexate delivered intravenously – this is the big one that penetrates my brain for any Burkitt’s cells that my be lurking there; it takes multiple hours and requires my blood to be slightly basic so that the Methotrexate doesn’t crystallize in my blood stream. At some point I expect to get transferred over to Brigham & Women’s but presumably when that is, is a factor of when a suitable bed shows up. I wasn’t sure if I was neutropenic, but I showed up with a mask anyway and they put me in a private room. Finished up my last home infusion of the antibiotic vancomycin this morning, so 1 expect 1) They’ll take more blood cultures to see if the infection cleared up, and 2) they’ll be re-accessing the port on my portacath to put a bigger needle in.

With my new wireless laptop I find there is a local network here at Dana Farber, but it’s private. So no joy there. At least over at B&W I can dial in.

[later] Settled in over at Brigham and Women’s and checked out by the resident. I’m becoming quite an old hand at this! The nurse is going to put in another needle into my portacath. I have what’s called a “double lumen” which means there are two chambers that can be accessed. Right now only one of them is accessed. Judging by my correspondence with other Burkitt’s patients there are a variety of different methods of semi-permanently accessing the veins. All of them, of course, have the advantage that they save the patient numerous sticks, but I wonder what the pros & cons of the various methods are. These are the methods I’ve heard about: Portacath; Groshong; Hickman; and I suppose there are variants of those, and others. How does the medical team decide which method to use?

My Portacath has the disadvantage that the fairly thick needles have to be changed weekly. The first time I had the needles changed I didn’t know what to expect, but now, so long as it’s been done by someone who knows what they’re doing (i.e. no student nurses) it’s not too bad. When I go home and I don’t need it they just take the needles out and I can take showers and baths as normal, without having to get wrapped up in plastic wrap. Note: despite what anyone may tell you, Tegaderm works much better than Press ‘n’ Seal!

Re the earlier question I raised in my blog recent about how doctors decide which regimen to use, here’s the response I received from my oncologist:

“The choice of regimens is largely physician/institution dependent. I view HyperCVAD and the Magrath regimen (the one you are on) as essentially equivalent as the drugs in both regimens are nearly identical, just some differences in the schedule.”

Last day at home before I go into hospital for a few days to finish up round three, and I have been gathering up a few items to keep me company while there. The laptop of course with its new wireless card (Thanks Jimmy) – It’ll be interesting to see if there are any networks available to me at DFBWCC. A few CDs including new arrival “Musical Evenings with the Captain” to accompany the Aubrey-Maturin books. I’ve not done much reading while I’ve been home. Also a couple of DVD’s, including the Roger Corman classic “Rock and Roll High School” Also, some snacks.

Making progress on the long-term-disability front. I got a call from the Hartford looking for more details on admissions and discharges, so with any luck they can cut us a check this week. That’ll help since I’m temporarily off the CSC payroll. For those of you folks that don’t know, CSC stands for Computer Sciences Corporation, and has been around for eons, relatively speaking, having been founded in 1959. All-in-all it’s a pretty good company to work for, and still offers a pension plan, but following IBM’s lead I wonder how much longer that will last!

The weather today is unusually warm and windy, gusting to 60 mph apparently. I swear I just saw a squirrel blow across the front yard. I’m just hoping that the tall spruces in the front make it. Already we have some branches down in the back yard.

Woke up this morning rather stiff in the legs, probably as a result of too much time immobile in front of the computer over the last two days. I also suspect some water retention in the legs. I have the kitchen alarm set to remind me to get up and stretch and do my laps around the house every hour. We’ll see what the doctors say when I’m admitted tomorrow.

Curious to find out the results of the Blood Drivethat was held at the Volpe Center yesterday, under my name. (Again – thanks Jimmy). I’m off the rolls of blood donors permanently, I think, but I used to quite enjoy this social event at the drives held in Stow. You don’t need me to tell you, but if you’re not already a blood donor and are not medically ineligible from becoming one, it’s a virtuous thing to do!

Martin left for Spain yesterday, so we’re now back down to our little family of three: Mo, Miranda, and myself, plus Diggory, the wheaten terrier. The house is a little quieter and I’ve spent a lot of the day corresponding and updating the blog. I know the topics have become a bit academic recently – just an attempt to get my thoughts in order. I also read though another blog of a Burkitt’s patient in the Northwest whose treatment started back in September last year. The treatment is just so long! I always promised myself that if I was laid off for an extended period of time I’d use it to write the great American novel, or to learn to draw. So far not a lot of progress on that front. It’s probably a good warning for what I’ll be like in retirement, laying back in my Lay-Z-Boy, and growing grumpier and grumpier. Actually, although I’m only 54, I think I might actually enjoy retirement, whenever I decide I’m ready for it.

Apparently, I’m unusual in the male population in that I’ve always been attracted to strong women, and Mo certainly falls into that category. Also, we built a lot of shared experience during the 12 years that we knew each other before Miranda was born. Like many others, probably, we started living together in abject poverty without much of a clue as to where we were headed. Walden, NY, in case anyone is wondering. It used to have a knife factory, but when that closed down in the early 1900’s nothing much ever replaced it. We used to hang out at “The Talk of the Town” and play Pac-man on those glass tables, drink beer and smoke cigarettes with Henry and Ellen. From there, things got slowly less sleazy. I met Mo’s parents, and got a reputable job in NYC teaching Advanced Placement Computer Science, having spent the summer studying Nick Wirth’s book Algorithms + Data Structures = Programs; it was the skinniest book I could find on the subject! After we got married Mo joined me in my apartment in Bensonhurst in Brooklyn. (The poor fellow in the apartment next to me, who we never met, got whacked by the mob!). After that we moved to Boerum Hill in Brooklyn, and then, on a whim, to Boston – just because it looked like a nice place.

So, when Miranda finally leaves the nest, but not for a while I hope, I’m actually looking forward to resuming our former life! The coast of Maine looks like a nice place to go. The winters may be a bit tough, but global warming will probably have given it a climate like the coast of North Carolina by then.