[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.

On-going problems with nutrition, but nurses are taking more care too. Had ice-cream frappe at lunchtime.

Problems with dilaudid: vision blurriness of vision and mild pain with loud noises (not actually problems, but inconvenient), auditory hallucination. Rate is 0.7 mg/hr with clicker that I can use to deliver 05 shots every 7 minutes. But relying more on clicking to deliver extra shots reduces the time that I can do l-brain things, and r-brain things that require concentration. I write in the green record book first which makes it easier to capture events and thoughts promptly.

Read some survivor stories at www.burkitts.org¹. What stuck me was the length of time needed for the treatment. Were more than six months. Also, the wide variety of ways in which the lymphoma exhibits itself in the early stages. Maureen entered the data from my hemo report in the spreadsheet. Of the 22 different tests, 20 have numeric values. I have it set up so that I can see them over time, each on their own tab, with the thresholds for the test (min, max). The purpose is so that I can whether I traveling in the right direction. So far, I’m not, but as I said earlier, I also need to control my own expectation. If all goes as normal, I should reach my nadir by Thurs/Fri this week, and my counts should start moving up.

Got Colm to list for me all the oral meds that I’m supposed to be taking. Not so much that I’m then able to check up on the nurses, but because I want to be able to time my naps around them as much as possible. I have enough problems without also having to deal with someone waking you up to take a med! During the day. if I see that I haven’t received a med that I’m supposed to get, then they may be running late. It’s had to tell what’s going in the ward because I have a private room where the door has to be kept closed all the time. If they haven’t delivered the med after a reasonable period of time then perhaps the nurse needs reminding.

Had a great game of Uno yesterday when Mo and Miranda came in. With three people you really have to concentrate to see which direction the game is going. I’m sure we got it wrong several times. It was the best of four. Mo, Miranda, I each won one hand, followed by a protracted round when we went through the entire deck twice. Eventually, Miranda won. Short visits are good, because even if I’m feeling bad, I can keep I together for a while. Yesterday I felt great, and the memory of it has great sentimental value.

Mo came by herself today since I could barely talk and was feeling really shitty. We put Miranda on speaker phone and she practiced her three songs: ‘Reggae Vibrations”, “10^th Planet”, and “I Want to Hold Your Hand.” She’s really coming on with accuracy and keeping in time. Still needs to work on tone production.

Mo also brought some more CDs. Vision is getting a little blurry so will sign off to take a nap. (They’ll probably pick this time to do a chest x-ray.) Don’t know if they’ll do it in the room or wheel me down there.

1. This site is no longer active ↩︎

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…)

[GROSS ALERT BEGIN]

Sitting up in bed as I write this. I have been vomiting in periods since before the night shift change. Several hours. Vomiting is not the real word, since what I’m vomiting is mucous. Began with some disorienting hallucinations – I knew where I was but was like a bizzarro world version of B&W, as if the current world weren’t bizarre enough. I had an intense urge to vomit. When I do vomit, no food comes up, just mucous, inordinate amounts of it. I lost track of time, but seemed to have slowed down a bit. Mouth is still mucousy and I periodically clean my tongue with the use of a tissue. Sounds disgusting, so it is. It feels as if the fever is breaking, although when I write fever, it’s not something that corresponds to the temperature that they measure when they are doing my vital signs. A sign that I am going to vomit is when I lie down and breathe slowly and get a crackle, if I make a sound I can make it resonate with the sputtering. [Must be that Tuvan throat singing I wrote about the other day.] I sit up abruptly and vomit into whatever I’m using, right now a basin, and my vocalization gets louder. Finally, I’m left with a steady drip of mucous from my mouth, which I will help by grabbing it with a tissue and pulling it out.

[GROSS ALERT END]

Haven’t had a vomiting session in the last half hour and hope that this may be the end of it. I am going to try to clean my self up a bit and see how I feel when I move around.

There, that’s better. It’s 7:52 and I’m writing this in the brief moment of the day when the sun shines into this room. The hospital and adjacent buildings form a well. Three of the buildings are only a few stories higher than this one, but the other side is 40 floors at least.

Tidied up a bit and washed my face which now has a fixed expression; mouth open and lips slightly further apart on the right than on the left.

[GROSS ALERT BEGIN]

Dr. S just stopped by to share the news from my latest hemo report. Not all the results are in, but enough to show that I am past my nadir and on my way up. The symptoms I described in yesterday’s entry are those of mucositis. Looking forward to clawing my way back up and feeling better so I can go home.