The doctors stopped by very late this morning, about 9:30 am. I guess they wanted to keep me in suspense. The good news is that the CT scan did not reveal any abscessing, so I won’t be needed any amputations just yet. The good news was tempered by the bad news that one of my blood cultures had tested positive for an infection; later another one tested positive too. What this means is that they have to keep me on a wide range of antibiotics for a while. Most likely, the infection is in one of the ports of my port-a-cath, that ingenious device that was implanted in my chest earlier, from which my twice-daily blood draws are taken, and through which I receive my daily infusions.

As I understand it, the port-a-cath serves as an expanded vein providing a reservoir of blood just below the skin. There are two external access ports to the port-a-cath that each consist of a needle that accesses the reservoir internally, and externally has a little box thingamajig about three centimeters long and 0.5 centimeters wide, resting on a pad of gauze, and standing out from the chest. The box thingamajig is connected to a length of plastic tubing about ten inches long and terminates in a blue plastic screw connector. There is a clamp on this tube allowing flow to be shut off. This connector is connected and disconnected several times daily. To draw blood, for example, you (the nurse) must disconnect the tube from the IV and draw off some blood (10 cc). This blood goes to waste because it is mixed with whatever you were just being infused with. Then the nurse gets the needed blood sample by connecting the tube to a color coded vial containing a vacuum. The blood is drawn into the vial by the vacuum. The vial is disconnected and the nurse injects saline into the line. Each time the tube is disconnected you have to wipe the connecter with an alcohol wipe. If the tube is to be disconnected for any length of time—for example when I am disconnected from the IV to take a shower— the tubes have to be flushed with Heparin, a substance that prevents clotting.

My blood cultures are being re-checked. As well as drawing blood from both ports, they also sent a phlebotomist who drew blood directly from the vein. It takes about a day to run the cultures, so I hope to get more info tomorrow. How this impacts the beginning of my next round of chemo is not yet clear. Dr. Jacobson is out of town and the residents have been emailing him. My guess is that Dr. J. will want to start the CODOX-M round as soon as possible. Whether this changes the math about whether CODOX-M is done in-patient or out-patient is also unclear. The antibiotics that I’m on have to be delivered IV and there is the possibility that this too can be done at home. I think Mo is none too thrilled about the prospect of having to manage IV at home! Hopefully the doctors will be able to agree on the plan tomorrow and let Mo and I know what’s going on. The uncertainty grates.

Read the Penn Jillette article that Charles Jowett posted a link to earlier. He makes the point that there is a step beyond mere atheism, where you go beyond not believing in God, to a state where you actively believe that there is no God. Now I would call the first mere agnosticism, but no matter. For me, to be an atheist means that I believe there is no God influencing the events of the world, there was no creator, and there is no afterlife.

Penn puts is this way:

“..Everything in the world is plenty for me. It seems just rude to beg the invisible for more. Just the love of my family that raised me and the family I’m raising now is enough that I don’t need heaven. I won the huge genetic lottery and I get joy every day.”

Becoming an atheist is liberating: I offer the following passage from POB’s [Patrick O’Brian] “Ionian Mission,” describing the Bach Partita in D Minor. The pure simple English expressing powerful ideas is one of the reasons why I love POB’s writing so much.

“It was as though he were fox-hunting, mounted on a powerful, spirited horse, and as though on leaping a bank, perfectly in hand, the animal changed foot. And with the change of foot came a change in its being so that it was no longer a horse he was sitting on but a great rough beast, far more powerful, that was swarming along at great speed over an unknown countryside in pursuit of a quarry – what quarry he could not tell, but it was no longer the simple fox.”

Feeling much better. Spent a couple of hours last night relearning Cribbage and playing it on the computer. I think it would go so much better with a couple of pints though!

My appetite is coming back. Made a good attempt at a new year’s lunch of turkey, cornbread stuffing, potatoes, and peas and onions. Not the way Mo and would have cooked it, and I regret that I wasn’t able to palate Xmas dinner when I was back home. I also miss Miranda’s shakes and smoothies. They don’t seem to understand what it means to make a “malted shake” here (duh – you make it with malted milk!).

Got myself disconnected from the infernal infusion device for a few hours today and walked around the ward, and also around the wards one floor down. I’m on the sixth floor and have a bit of a view of another hospital – Mass Baptist I think it is. I’m curious where Choate’s sanatorium, one of the Boston locations mentioned in POB’s Surgeon’s Mate was located. Given POB’s attention to detail I would guess that it was based on a real sanatorium. From the description in the book, it had a view of the harbor and was located on a hill. The harbor in 1815, I fancy, was bigger than it is today, but Aubrey was able to see far out to where the British blockade lay, so the location should still have a view of the harbor. The name of the owner, Choate, I assume is also based on a real person. There was a Choate-Symes hospital around the corner when Mo and I lived on Lawrence Street in Woburn.

Talked with Martin this afternoon and am looking forward to his visit a week on Monday. Not sure what I’ll be doing then, but I assume some sort of outpatient visits for the CODOX regimen, so he’ll be able to relieve Mo of some taxi duty for a coupe of days. It’ll also be nice for him to get to know Mo and Miranda better.

I have a CT scan schedule for this afternoon to image my left leg. I’ve been having muscle pain down there, and it’s possible that it’s abscessed. Watch this space! (i.e., stay tuned!)

One important difference between medical and aviation safety systems, that I’m not sure I have adequately addressed yet, has to do with short-staffing. In aviation, if the crew doesn’t show up the plane doesn’t fly. The customer is inconvenienced, but, except in rare cases, not put in any danger. In medicine, if the staff is not available, the work still needs to be done, and has to be shared with other staff, and the customer *is* put at risk. Here, at DFBWCC, in the oncology ward that I’m in, the nurse:patient ratio is 1:3. Also, there are PCAs (Patient Care Assistants) that support the nurses by taking vital signs and responding to non-medical patient requests, and alerting nurses in case a situation needs to be escalated. Some PCAs are student nurses and can perform other tasks, such as disconnecting patients from their IVs.

At DFBWCC, I gather from the literature that staffing ratios were significantly improved following the Betsy Lehman accident, but obviously, the ratio is still subject to perturbations. I gather that in certain units, such as an ICU, they can call up extra staff if they are short, but in other units, and particularly around this time of year, with the holidays and increased likelihood of bad weather and resultant travel delays, there remains the possibility of short staffing. Yesterday, for example, I had no PCA. A very minor impact obviously, but still one that increased the nurse’s workload.

An obvious performance measure to track is the actual staffing level vs. the planned staffing level. There are controls in place to avoid inadequate staffing levels; for example, a nurse may have to work a double shift if his/her replacement is not available. How often those controls are invoked, and measuring staffing levels that do not invoke controls, could help tell what pressures are acting on minimum standards.

One of my nurses tells me that a friend of hers works at another hospital where the nurse:patient ratio is 1:6. She thinks this is too low, but I suspect it is not uncommon.

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.