Sent: Monday, October 25, 1999 7:39 AM
Subject: T+4, early morning

Wasting away again in neutropeniaville.

Betcha never got an email before from somebody without any white blood cells 
or an immune system.  

I am officially neutropenic, without white blood cells.  They take a blood 
sample from me each morning at 4 AM, through one of the chest tubes, and send 
it to their lab.  This sample is used for both blood cell counts and blood 
chemistry tests.  There is a report available on this in time to set the 
theme of the daily medication requirements, and the doctor's early morning 
meetings.  They have also provided a complete print out with everything on it 
when I asked, but it has more info than even I am interested in. 

It's a little weird, no, it's very weird.  I have been getting complete blood 
counts (CBCs) all summer, about every two weeks, to see if I was running into 
some kind of crisis.  My main problem was anemia, which would show up in 
lower hemoglobin and hematocrit levels.  My initial CBC prior to diagnosis 
had a crit of about 27, compared to my normal 43 or so at the time I gave 
blood in March.  Basically, if you drop to 25 or below, they give you 
transfusions, which is why I have had transfusions on 2 days since coming in 
here.  I also worried about my platelets and white blood cells all summer, 
certainly reacting each time they took a little dip or rise.  Knowing what I 
know about measurements, I shouldn't have been too concerned about this 
jitter because nobody could tell me how repeatably the measurements were.  
You tend to react differently when you are looking at numbers for you blood 
cells than from a similar looking graph for a thermocouple. 

I have attached a spreadsheet that I have been keeping since way back when.  
There are two worksheets, showing my blood cell counts and my exercise 
record.  By the way, I have walked about 3.3 miles since coming in here.  
This is in excel, and I hope this is compatible with your software.  I 
decided it might be interesting for at least some of you to keep up with 
these numbers, and will try to remember to put each new day's numbers in 
these emails.  You can update these graphs on your own.  Please ignore this 
at your own pleasure.

You can see on the graphs that my white cells have dropped like a rock, the 
platelets are down about 75%, while the other two, representative of the red 
blood cells, are more or less where I started from.  These results are all 
exactly the goal of everything that I went through here last week, and are 
completely normal for someone in my position.  If the wbcs or platelets had 
not dropped significantly, I would probably be asking for a refund by now.  
The choppiness in some of the counts, particularly on the first few days, is 
attributable not to anything that was really happening to me per se, but 
because of the large amounts of IV fluids, chemo drugs, etc. that they were 
pumping through my plumbing.  Note also the days when the hematocrit drops 
below 25.  This signals them to come in here and put me on a whole blood 
transfusion, which has happened twice.  

The lowered platelet counts is why I requested platelet donors.  I don't know 
where these have to drop to before they start giving me these cells, but 
would not be surprised at any time.  As I have said before, the platelets 
have a shelf life (which brings up an interesting vision in my mind) of only 
a few days and this is why they have staggered the donations over a long 
period of time.  Keep those cells and letters coming. 

Now about being neutropenic, without white blood cells.  I was told yesterday 
that I am in the most critical period for infection, my open Petri dish mode. 
 You don't want to know the problems that I can get into from the various 
bacteria, molds, viruses, etc. that are floating around you right now, or 
living somewhere in your bodies.  I have been sitting here for 11 days, and 
have had a lot of time to ponder how one of these little critters could 
circumvent every system and procedure that I have seen around here, and get 
to me.  Did you ever see the movie Outbreak.  It's about an ebola virus that 
is introduced into northern California through an illegaly smuggled monkey, 
and infects the whole of this small town.  There is a scene in a movie 
theater where a guy sneezes, and they show a computer graphic of a virus 
particle coming out of the nose, flying through the air and going up someone 
else's nose.  Of course, both end up, well, you get the idea.  Basically, it 
would seem incredibly easy for some nasty thing to get in here.  We have 
asked repeatedly why I am not in total isolation, why things are not set up 
like a real clean room, why they still allow visitors, dozens of questions.  
They keep telling me that many such environments were set up for just the 
obvious purpose of trying to radically reduce any risk of exposure.  
Amazingly, study after study has also shown that there is no significant 
difference in infection results from one transplant center to the next, even 
with very different facility's capabillities and protocols.  The one thing 
that does seem to correlate, and this is on signs all around here, is that 
people need to wash their hands with anti-whatever soap before entering a 
patient's room, and they cannot be sick.  You saw yesterday that I was out in 
the hallway, which is considered no big deal here.  There are also numerous 
visitors to the unit hallway, ranging from medical people to hospital staff 
to patient friends and family.  It's hard to imagine how the can't be sick 
rule is upheld for all these people, but they keep telling me that what they 
are doing here really does work.  This is an almost new, supposedly state of 
the art facility.  When asked, some of the staff who have been at other 
places have mentioned things like 'you should see what some other place is 
like.'  I keep thinking of things that I would change around here to 
incrementally improve a patient's (my) chances of getting through all this.  
You know, a 1/4 percent improvement here or there.  These things seem like 
they could add up.  You place an entirely new focus on round-off and all 
those small statistical things when you are talking about improving your 
chances to survive by even the tinyest amount. 

The above would be truly amazing to me, except for something else they have 
told me.  Basically, the risk of infection is by far the greatest from 
organisms that I brought in here with me, in my mouth, gut, other places.  
They had me on antibiotics for about 2 weeks before coming in, a pre-emptive 
strike.  There are specific other antibiotics and other potions that are 
designed to attach specific bugs in specific locations.  They are even 
checking my stool samples to find the presence of what they call CDif 
(clostridium something or other) which, if found, is not serious, but 
requires some changes in my medication.  They appear to be on top of all this.

In other news.  I am still feeling great.  I noticed that my mouth feels 
different the day before last, no sores or pain, just different.  They 
verified this at yesterday's rounds, and said that the white color inside my 
cheeks shows that the epithelial cells there are dying and starting to slough 
off.  This is as natural as day follows night, considering what I went 
through with the chemo and radiation.  If this didn't show up, then they 
weren't doing their jobs.  I am still active, and amazingly happy.  It is 
about 5:30 am, and I am actually real, real hungry, which shows my relative 
health stature.  Most people would have been one or more of the following by 
now: bed ridden, nauseous, semi conscious, not alive , you get the picture.  
I am planning on working on my juggling today!

Dave