This is Maureen letting Bob’s friends and family know he went back into the hospital tonight. He is extremely weak and had a low-grade fever. They put him on IV fluids, Tylenol, and antibiotics in the emergency room and his fever dropped before he was moved upstairs. He will stay in the hospital until his WBC is back to normal, and possibly until he’s strong enough for round 3. Thank you all for your support and wishes. He’ll be back in his journal as soon as he starts to bounce back a bit. He has his cell phone with him. We wish you all a Happy New Year.

Love, Maureen, Bob, and Miranda

===

12/30/05

Still at a low point, but the saline and platelet infusions did me some good. I can now make short trips to the bathroom and around the room without losing breath. I have odd muscle pains in my upper right wrist. The great thing today is that I can breathe with my mouth closed, although keeping it closed requires conscious effort. The paralysis in the lower lip, although not painful, is very inconveneient. I spent a lot of time last night in bed awake: not doing anything or thinking of much; just breathing.

From my sick bed I see the top of a bare tree over the top of the blinds. Maybe I’ll spend some time downstairs later today. The view is more interesting.

[later]

Not doing well at all. Mo checked my temperature and it was 100.7 F. Called Sloan and he said to monitor for an hour. 45 minutes later my heart started racing so I rechecked my temperature; 101.3 F. Off to the hospital to be readmitted.

[later]

In the hospital and it’s clear that I’m quite a mess. Blood pressure is very low 80/45. Shivering at times.

[later]

Now, after a night of multiple infusions, including two units of blood, I feel the best I’ve felt for many days. I’ll be laid up here until my counts come back up, then they’ll start the Codox as outpatient.

White Blood Cell Count: 0.1 K/UL (low: range – 4.4 -10.8)

Platelets: 12 K/UL (v low, range 150 – 400).

Severely neutropenic and the low platelet count explain that shortness of breath. Back for a scheduled appointment at DF in the infusion ward. Out-patient only. At my nadir after IVAC (begin + 10 days) and need to stabilize before start the next round – round 3. Began to feel very weak and short of breath yesterday. Appetite mediocre. Reduced to drinking milk-shakes only. Have just received liquids to get me re-hydrated – it’s simply not possible to drink enough liquids orally. Blood pressure this morning was 95/70.

Dr. Sloan came by to get my consent on the form that allows them to give me platelets. It’s interesting the insistence that have on getting patient consent. Dr. S/ contrasted the procedure with his experiences in Africa where decisions are made under different circumstances, including survivability and availability (triage). This whole patient consent thing strikes me as a bit bogus. I know that there are various sects that have religious strictures about receiving blood, but leaving those aside, if a doctor recommends a procedure, I am likely to follow it, rather than pick and choose. So the decision has already been made when I elected for the treatment.

Where I may choose to exercise discretion is in making sure that the folks administering the procedures understand them, know what they are doing and are executing them correctly.

Doctors can make big errors, such as misdiagnosis, but there’s not a lot a patient can do at this point except to ask for a second opinion – and frequently the opportunity for that has already passed. In my case for example, any delay in administering the treatment would have been very serious indeed.

A little more on the name Diggory. I think it’s actually better as a Dog’s name. Within the Doutch/Douch family, trying out names on pets before we use them for children is not uncommon, (Lady Hamilton – Hamish, Sophie/Sophie) but I doubt in the final analysis if it would make a good first name for a Doutch. The alliteration of Hickory Diggory Doutch is a little too obvious, whereas Hickory Diggory Dog is just fun. If anyone else has literary sightings of the name Diggory, please send them in.

Regarding the name Miranda, my daughter’s name. It comes from the character Miranda, Prospero’s daughter, in Shakespeare’s Tempest. The particular words that resonate for me come from Miranda’s speech in Act V, Scene I:

“O wonder!

How many goodly creatures are there here!How beautious [sic] mankind is!

O brave new world,

That has such people in’t!”

The line “O brave new world,” of course was picked up by Aldous Huxley for his dystopian novel. I prefer to read it here in all its innocence. In the US now, of course, Miranda is commonly a last name of Latin origin. In fact, one of my PCAs at the hospital is called Ana Miranda. I don’t know how common the name Miranda was as a last name in Shakespeare’s time. Does anyone know?

A quick word on the name Diggory. I first came across the name in Thomas Hardy’s “The Return of the Native” where Diggory Venn is a reddleman. A reddleman, I take it, is someone who sells reddle, or iron ore pigment. I have always liked the name, and thought perhaps if I had a son I would call him Diggory – a nice masculine sounding name, that abbreviates to Dig, or Digger. Convenient for a football player. Of course, when we decided not to have any more children and looked around for a dog, the name was too good to waste – perfect for a dog, especially a terrier who likes to dig.

Other literary sightings of Diggory, include Uncle Digory (one ‘g’, I think, from C.S. Lewis’s “Magician’s Nephew”), and more recently, “Cedric Diggory,” Harry Potter’s ill-fated competitor in “The Goblet of Fire.”

Back home again after 5 days of IVAC. Aunt Kathy and Uncle Dave are here and we’ll have a quiet time. They’re doing Chinese Food tonight, but I’m not allowed restaurant food. Ate chicken soup with toast and hummus.

Maureen injected me with a $500 Neulasta rescue shot tonight to help my body recover from all the toxins. Amazing what stuff costs. According to Bill Banks, a single bag of Rituximab, of which I’ve had two, costs $13,000. Of course, it’s grown from mouse cells so you would expect it to be pretty pricey. Not much juice in a mouse.

Have been corresponding with Lisa Kearns who sent me an article on system safety from the 2004 National Patient Safety Congress in Boston. 

http://www.ajj.com/services/pblshng/nej/article024245.pdf¹

It’s interesting and bears out my recent conclusions that 1) DFBWCC is in the lead in implementing system safety, and 2) there are multiple channels in the medical world where it is already being implemented and/or could be done better. If I write a paper based on my experiences, I think I will focus on the patient in system safety. The patient, if active and engaged – we’ll assume motivation – can be a valuable member of the team, and if educated in what is going on has much to contributes. I think this also ties in well with ideas if agile development in the software field, where the client is very much part of the team and knows broadly what he or she wants, but not how to get it.

1. This link is no longer active ↩︎