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.

In the West, viewed over the long-term of decades, we have seen medical procedures become safer and more effective. Increased safety and effectiveness are often thought to have come exclusively as a result of improvements in medical technology. However, each improvement in medical technology brings with it its own new and interesting risks. Also, modern technical technology is not always available, or affordable in many medical situations. The reliance on improvements in technology to bring improvements in safety obscures much of the work done in understanding individual and organizational error, and in developing quality management systems. Significant improvements in safety and effectives can also result from better safety management systems and education.

In the related arena of aviation, much has been made of safety management systems. The FAA Air Transportation Oversight System that I have worked with evaluates the design of systems and the performance of those systems using six safety attributes:

• Procedures—documented methods to accomplish a process.
• Controls—checks and restraints designed into a process to ensure a desired result.
• Process measures—used to validate a process and identify problems or potential problems in order to correct them.
• Interfaces—interactions between processes that must be managed in order to ensure desired outcomes
• Responsibility—a clearly identifiable, qualified, and knowledgeable person who is accountable for the quality of a process.
• Authority—a clearly identifiable, qualified, and knowledgeable person who has the authority to set up and change a process.

Loosely translated to the medical arena, this means that the systems and procedures established to ensure safety should be well designed to achieve the desired end, and also possess built in controls (or defenses) to ensure that the systems and procedures operate as planned. The systems must be objectively checked to ensure that they are, in fact, in place and proving effective. Objective checking involves oversight by third parties as well as self-reporting of performance measure. Risk management is a third part of this. Safety can never mean freedom from all risk, but hazards and risks can, and should, be identified and managed appropriately. For more on safety management, the reader is referred to MIL-STD-882 as revised.

The previous paragraph focused on safety management, but that it not the whole story in operating a safe system. It is a feature of human nature that we focus on bad news – the accidents that were not prevented. These are the ones that make it on the network news, but there are every day dangerous situations that do not become accidents because of the quick thinking of person on the scene. It is likely that there are more of these accidents prevented by local heroism in the medical arena than there are in the aviation domain, but neither are they totally absent there.

To improve safety, therefore, we need to know more about how to design effective safety systems, and we need to know more about individual decision making. Acting as a backdrop to all of this are the actual cases that we are attempting to make safer. A flight in an airplane may appear fairly routine to most passengers, but in fact, NTSB accident reports bear out that some of the most dangerous parts of a flight are the initial ascent, and the descent. Similarly, while admitting the truth of Bjarne Stroustrup’s words that “Proof by Analogy is Fraud,” it would seem likely that some of the most dangerous parts of a medical case are the period of admission, where not all the factors impacting the case may be known, and the discharge, where a patient is left to carry out instructions regarding dosing and self-monitoring. Clearly there are other periods of increased risk, but I want to focus on just these two: Initial Admission, and interim discharge.

It’s now been four days since I received my last shot in the current CODOX-M regimen and I revisited my blog to see how I was feeling at the similar point last time. Last time I was in hospital and had just about learned the ropes. I had problems with mouth sores which I was keeping in check with the “magic mouthwash”, a cocktail of lidocaine, Maalox (specific variety unknown), and Benadryl. I also had the early symptoms of mucositis. I was also taking dilaudid on a PCA (Patient Controlled Analgesia) device to control the mouth pain, but in hindsight I think it didn’t do much good. Compared to then, I am doing much better at home. I am a little short of breath, and any time I sit down to read or watch TV find myself drifting off to sleep.

I have been corresponding with two other Burkitt’s patients, and a common thread is how difficult it is at the beginning of the treatment.

1. First off, you’re sick. Burkitt’s is incredibly aggressive and exhibits itself in all sorts of ways. In my case, it was almost entirely limited to tongue and the jaw. And even though I was admitted within a few days of the symptoms exhibiting themselves, it was already stage 4.
2. Second, most patients do not know how a hospital works, and it’s far from clear who’s in charge. I met a multitude of doctors in the first few days and they kept asking me the same questions. I assume it was easier for them to ask the questions over and over than to actually take a few minutes and read up on my case.
3. Third: Insurance worries. Fortunately, my wife Mo is very well organized and was able to handle this, but there was a lot of initial paperwork to process, that I simply could not have done myself. Heck – my mouth was so swollen that I couldn’t hold an intelligible phone conversation, and I did not have email access in the first few days.
4. Fourth: The pain medication that you get clouds your ability to think straight.

DFBWCC was very good in providing social work support, and I would like to acknowledge that, but there is only so much they can do.

If anyone else has items to add to this list, please post them or email them to me at [email protected]. I am trying to gather my thoughts for a paper that focuses on 1) increasing the role of the patient as part of the team in medical decision making, and 2) focusing on safety improvements during the particularly vulnerable period of patient admission and initial treatment.