Mo is here taking down the posters and packing stuff away. I’m going home this evening – yeah! Dr. S Stopped by and gave us the good news. Now the bad news is that I start IVAC (round 2 of chemo) on Monday.

I woke this morning with a clear head and a certainty that I was on the mend. I had not let myself dare hope that today would be the day, and indeed, in discussions with the other doctors, they seemed to think that I would not be able to go home until Monday. But Sloan and Jacobson are my cancer doctors and they get to decide. They want to push on with the chemo before the Burkitts cells get to build up again. My WBC right now, having been zero, is above the norm, and is presumably creating antibodies to fight off the nasty secondary infection. So, I should start to feel better. What I feel right now is tired. My muscles ache which is hardly surprising since I have not had much chance for exercise over the last three weeks.

[2:45]

Colm came in. He’s monitoring the infusions of the various chemicals, such as potassium, into my body to keep the blood chemistry correct. He’s also just shut off the PCA (pain control) to see how well I do without it. Here goes…

[9:30 pm Stow]

Got home about 8:45 and got sorted. Still not much of an appetite, but boy, it is good to be home, lying in bed upstairs with Diggory crashed out beside me. He has that doggie 6^th sense that allows him to sense mood, and although obviously excited to see me, he has been very restrained. I looked at myself in the mirror – I look pale, but already I can feel energy from familiar and happy surroundings leak back into me. And oh, the bed is so much more comfortable.

Another brutal night. I don’t know what it is about this secondary infection that makes it this way. A lot of doctors were helping me but I had this fantasy in my head that not all of them had my best intentions at heart. Yelling and retching every 19 minutes or so all through the morning when the doctors stopped by. [With hindsight, I realize that the fantasy was a side of effect of the dilaudid]. The doctors confirm that mucositis is what I have but there is not much apparently that can be done. We just have to rely on my rising numbers of white blood cells to make enough antibodies to see it off.

I was still very mucousy and distraught when Mo came in this morning. It’s good to see her and she can give me a read on my long-term progress. She can only get a window during the day. I can start a day feeling crappy and end up fine, and vice versa. Anyway, she says that I’m looking much better than when she last saw me on day 18. I actually feel a bit worse. But no matter, I need to do what I can to get fit. Mo helped me with breakfast and re-nuked many of the items that I had allowed to grow cold.

I felt drowsy and slept a bit and then felt stronger. There wasn’t a lot of time to do anything. We talked about how Miranda already knows that I won’t be home at Xmas. After this weekend pass (fingers crossed) I go right back in to chemo. Supper’s here so will stop now.

[later]

Did some more work, updating the journal and posting to the website. Recent entries have been pretty sparse, reflecting, perhaps, my mood and energy level. Have not, for example, had the energy to pick up my Aubrey-Maturin book for several days.

[later]

Felt tired and went back to bed where I slept for a few hours. The lips are now the main problem area. They are swollen and not properly lubricated. I use Vaseline but that’s not the same. I can’t close them when I’m speaking because then they stick together. When I do close them then I have to use my tongue to ease them apart. I tend to sleep with my mouth open. No real appetite. I made myself eat the lemon chiffon pie and the custard. Remarkably, tea tastes almost like it should and I do enjoy it.

[later]

Took another nap because I felt tired, and slept uninterrupted by nature’s calls, and woke with renewed energy. The nurse says I look better too. Oh, if only – if only I can get a good night’s sleep and avoid the nightmares of the last two, I would be so happy. I do feel I’m getting better. Some of my coughs now are normal coughs, not ones that require me to expectorate crap into a bowl.

Vitals: Oral temp: 99.2, O2 97 percent, pulse 112, blood pressure 116/70

[GROSS ALERT – BEGIN]

Coughed up some chunks after squeezing the saline mist and clearing my throat. Feels that they are chunks of skin. This the second time this has happened. Talked with a nurse last night and apparently this is normal. Will check with the doctor today. (I did, he has a much better explanation. A coating has grown around the tubes in my lungs, and when I cough some pieces break off. Sometimes a whole section – say one inch long, 1/8 inch in diameter, will break of. The resulting shape is therefore a cylinder.

[GROSS ALERT – END]

A new nurse, Vitas, asked me about the use of Gluconate. Currently I use it two times a day. I started at two times per day, but we had upped it for a couple of days to four times a day. This didn’t seem to do too much and so we went back down. Vitas asked “Did I not feel it harsh?” And I said “Yes, but I’m not sure why because it doesn’t have any alcohol in it.” “Oh yes it does,” he said, and he showed me the contents lists: 11.6% alcohol. The mouthwash Alkalol that I’m also using, has a mere 0.02%, which is negligible in drying. Apparently there is a product similar to Gluconate that does not have the alcohol. Will ask DiCaprio what it is. I think that one of the reasons that I did not think that Gluconate had any alcohol in it was because I have a similar product back home, prescribed by my tooth extraction surgeon, and I know that doesn’t have any alcohol. Two system safety issues here:

1. Moving nursing staff around can be a good thing, because, even though they may not know the patient that well, they can pick up on things that previous nurses missed.
2. Always read the contents label on the bottle, to make sure you’re not getting something that you don’t want.

I heard Vitas and Rose and someone else talking about recording the temps in my case, and how they should measure and how often. Did not hear the decision, but it sounded as if there was some rank being pulled. From a safety angle, this is the classic team-building problem of pulling or deferring to rank, plus this team also has a high degree of changeover. There is, in fact, a measure that you can use to measure how a team is working. The problem is similar to that of crew resource management in the FAA. You can read more about this at Hofstede’s Cultural Dimensions Theory.

Had another conversation with Vitas, the nurse who has my case tonight. He’s on staff, but there are contract staff too. He’s been a nurse for only a few years, and before that he was a Pinkerton. He left because he was being asked to do things that he was not comfortable with. He said I would be surprised as what is legal. I said I wouldn’t because I was a member of a jury a couple of years ago, and had seen a detective being interviewed on the stand describe some of the things that he did, such as snapping pictures of the plaintiff’s daughter filling up with gas

Walked around the room and got everything arranged the way I want. When you get this far into a treatment you want to make life as simple as possible. Sat at my desk, actually one of those hospital tables, and got caught up on email and getting the notes from previous sessions typed up, proofed, and entered into the weblog.

It’s a sucky application because it objects to certain characters. Two of them I have found being the greater than/less than characters pair (angle brackets). Also, a single journal entry can be no more than 5000 characters. One more limitation, you can only post 6 pictures at a time. I may have to consider a new blog hoster if this goes on.

A very quiet day since Mo didn’t visit. I wrote five Xmas cards.

In the evening, while getting back into bed, I accidentally stepped on one of my lines. I called the nurse: the whole line and bag had been compromised. The trouble was, he did not know if there was another bag on floor, or whether pharmacy could make something up.

Realize that when I am walking around I am drawing three or four tubes behind me, so my motions have to be very studied to make sure the lines don’t get caught up in anything, or that I accidentally step on things.

Talked with the doctors about my auditory hallucinations brought about by usage of dilaudid. Not unexpected or particularly unpleasant, but not what is desired since the amount of painkiller that I can take and not space out or sink into low state where I don’t care about anything anymore. They gave me a pill that lets me take a higher dosage and allowed me to spend a relatively pain-free night, pain perhaps 3 on a scale of 1 to 10. This 1-10 scale is a scale that every one uses and is very subjective. Then, this morning, Dennis called. I said hang-on and hoisted myself up in bed to turn on the light, and I realized I did not have a cell phone in my hand. I had had another hallucination.

[1:00 pm]

Mo’s here. Just took a shower and Lisa is hooking me back to the IV. Voice very harsh – I sound like Don Corleone.

Coughing continues to be a problem for me. The Teflon pearl seems to help a bit. Trying to get enough dilaudid in me so that the pain is reduced, but would prefer that cough is reduced, but I would prefer that the cough go away forever. Appetite continues mediocre and threw-up. I’m left with a cough. Lisa is going to get me a patch that will dry me up. Not sure that thus will do anything, but I’m willing to try.

Drank the frappe and Boston cream pie. I do not have the taste for anything salty. I am preparing a stash of muffins and Boost that I can order that I can eat later.

Temp is high so I can’t have any blood. Will try to get some sleep.

Falling behind on posting the blog entries. The last posting was day 15 and it is now day 17. I am in a lot of pain and need to be able to take a lot of naps.

I am making a list of what works and what doesn’t work.

Drug Name	Period	# of pills	Purpose
Teflon pearl	3 daily	1	Cough
Saline mist solution	4	Squeeze	Keep mucous membrane soft.
Nystatin	4	sufficient	Mouthwash (gentle)
Alkalol	4	Sufficient	Mouthwash (gentle)
Dyproxa			Reduce effects of pain.
Dilaudid			Control pain
Nexium	2	Three times a day.

Also, have not updated the hemo report spreadsheet actuals from last night (and printed today.)

Will turn in now. Waiting for my temperature to drop so they can give me my blood. The temperature needs to be in a certain range since high temperature makes undesirable side effects of getting blood hard to identify.

Dr. S and J said that the blast # should be zero, because these are the cancerous cells. Original counts of cell are by machine, so they looked at them personally under the microscope and determined that they did not appear cancerous. So this begs the question, if they are not cancerous and not any of the reported types, what are they?

[4:30 pm]

More system safety.

• Overloading poles with bags of meds to be delivered later makes them unstable. Stability is one of the driving design factors of the pole and it’s being overridden. This is just a single instance of a well-known engineering problem. If you build a system with certain passive controls built in, people may be tempted to take advantage of them. You see this in the Big Dig too. The Big Dig was built to allow better traffic flow through Boston. While this may have happened on some routes, it seems to me that the main effect on others has been merely to increase the number of cars on the road and the congestion has remained the same. I’m sure there are numerous examples from aviation but I can’t think of them now.
  
• Variation between hospital staff and equipment and what is measured and how. I had my temperature taken by two different people at two different locations of the body. There are four of them, mouth, left axillary, right axillary, and a fourth that I won’t name – suffice it to say that it has a different color sheath, red as opposed to blue used for the other three spots. I sure hope the person taking my vitals is not color blind! Theoretically you should be able to add one degree to the axillary temperature to yield the oral temperature, but this just that, a rule of thumb, not a real rule. There’s also no reason that both axillary temperatures need be the same. Anyway, as I said, I got three different temperature readings all taken at the same time: 98.5, 99.8, and 94.8). These values show considerable variance. The number entered in the book was the median. The reason that the axillary temperature was taken in the first place was because it was thought that the mouth temp could be abnormally high because of the local hot spot.

Good night’s sleep and woke refreshed. Feel much better and stable. Before I went to bed last night I scanned my emails from the cell phone. It seems that the CSC laptop is coming. Also, from DPT, a newsletter giving me the scoop on the latest Volpe happenings, including JNH’s announcement that he is moving on from the Volpe Center (I can’t imagine that he’s going to stop work altogether – wake vortex is so much part of his life.) Also John LoBue’s sudden departure (verrry interrresting…)