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?

My gums feel like jelly and I have to do all sorts of odd mouthwashes, but there’s a cocktail they gave me to help me eat, made of lidocaine, Maalox, and benadryl. You swish it around your mouth for about 20 seconds and then spit it out. About 15 minutes later your mouth is numb enough to let you eat. I wonder who invented this unlikely cocktail – it works pretty well.

The hospital hierarchy is becoming clearer. I’d never really paid much attention to hospitals before and never watched the TV shows – which I’m sure are wrong anyway – so consider these as relatively unbiased impressions.

Daily I see nurses: Co, Ka, etc. They have responsibility for administering medication and finding out changes in my condition. Over time, I imagine that they get to know you pretty well and so can tell if something is drastically awry. They can add a few medications here and there.

There are nurse assistants who take vital signs (three tests from which you get four answers: oxygenation level & pulse, blood pressure (in/out), and temperature. Many of these assistants are immigrants of many years. For example, Al is Haitian and came her 20 years ago. Ro is also Haitian (she loves goat meat, by the way!)

There are the folks who transport you by wheelchair. They may also be Haitian, but could also be poorer. I talked with one the other night wheeling me down to the PET scan. He lives out in Alewife (the projects?) and has a daughter, aged 4. We talked about daughters and I showed him a picture of Miranda and Diggory. He said he would like a dog but wasn’t allowed to have one.

Many of these folks commute vast distances. For shift work perhaps its not so bad however.

There are the various specialist equipment operators like the girl who gave me the baseline ECG the other day.

Then there are the doctors. Multiple sets of them. At the top you have the crème-de-la-crème like Dr. J who is a specialist in lymphoma. Working with him is Dr. S. He does the spinal taps or intrathecals (IT). I’m due for another one this afternoon. They will do longitudinal monitoring of my case throughout the three to four months. Dr. C, my admitting doctor is also a rare breed. She has a specific interest in my type of case and works on something called mouse models.

There’s a thing to be said for having taken so many drugs when I was a kid in Amsterdam. I’ve had so many hallucinogenic episodes over the last few days that I’m not sure if I could have handled them if I hadn’t had earlier spirit guides from the sixties. I do not know where this journey is taking me, or if indeed journey is the right term, but there has been at times a comfort in the return of old friends, such as last night when I listened to an entire movement of Haydn’s London symphony and heard every individual note weigh for eternity.

A mixed day. As I said just now as Rose came in, “I’m getting used to not getting used to anything.”

Some thoughts starting to emerge fleetingly. Hard to shepherd them into any rational system that leads anywhere. I realise how much I adore Mo, and even though I’m self-centered I find there really is a human-being under this skin.

Waiting in the corridor for the PET scan this evening with my mask on, sweating, I had my delusions of grandeur that I’m sure other cancer victims have had; of writing the great disease travelogue best seller, with enough humor and wisdom that it would sell a million copies. But I’m sure this is a worked-over genre. There has to be a better angle than a collection of anecdotes.

I find it interesting about the characters in the hospital. Most of the porters are Haitian and could not afford the insurance I have.