Sent: Saturday, January 29, 2000 12:48 PM
Subject: T+100

Greetings.

It's been quite a while since I sent out a general update on my condition, 
but today is sort of a special day.  I've made it to 100 days since the 
transplant, which is viewed as a milestone, both in changes in my treatment 
as well as improved possibilities of long term survival.  Basically, today I 
have a 90% long term survival chance, at least statistically.  Personally, 
because of my excellent progress through the transplant and recovery, I have 
viewed myself at this position for quite a while.  

In order to celebrate T+100, I had made plans to go x-country skiing today.  
However, a recent bout with low grade fevers and the very cold outdoor 
temperatures made me change my plans.  If anyone is interested in some easy 
touring, maybe in the National Park, in the next few weeks, let me know.

Generally, the time since the last update has been kind to me, with few 
health related problems.  The Gancyclovir they gave me beat the cmv virus 
within 2 weeks, and it has not reappeared.  The major issues I have been 
dealing with are the inevitable side effects of the drugs that they are 
giving me to ensure the success of the transplant (Cyclosporine), and to 
fight off the graft versus host (GVH) disease that showed up on my skin way 
back on day about T+12 or so (Prednisone).  

The Cyclosporine produces an annoying shaking in my hands as well as loss of 
nerve sensitivity and a tingling in both my hands and feet.  Basically, it 
keeps me in a state of mechanical ineptitude, and I am always dropping 
things, and don't trust myself to be near anything sharp.  The docs have said 
that they will probably start tapering me off the Cyclosporine in about 2 
months, but I will likely be on it at some dosage for 1 to 2 years.  While on 
the Cyclosporine, my immune system is also suppressed, so I will need to 
limit contact with people and other potential sources of the various 
infectious microbes that are waiting out there for people like me.  The 
Cyclosporine also reduces my muscle mass, and makes it difficult to build 
myself back up.

Prednisone is a steroid that deactivates the T-cells in my immune system, 
similar to what the AIDS virus does.  It is intended to specifically prevent 
the GVH, and has, so far, performed admirably.  They have gradually reduced 
the dosage to about 40% of the original, and no signs of GVH have reappeared. 
 Basically, they periodically lower the dosage, and watch me for a few weeks 
to see if any symptoms of the GVH are apparent.  So far so good, and I hope 
to be off this potentially nasty drug within a month or two.  

The only recent health problem that I have had is an on again/off again low 
grade fever that first showed up about 8 days ago.  My situation is such that 
any health changes need to be taken seriously because they could progress to 
something which is very serious.  These fevers have been more an annoyance 
than anything that is threatening, but they have caught my attention.  The 
nurses at the clinic have taken blood cultures to try to grow any infectious 
microorganisms that might be causing this problem, and I am supposed to get 
results back on Monday.  The fevers baffle me, because they come and go, with 
many hours each day in the normal temperature range, and then going up to the 
100 to 101 range for a period of time.  By the way, 101.5 is the trigger 
point where something serious may be happening which needs to be immediately 
taken care of with a trip to the clinic or a hospital.  There really are no 
other symptoms associated with these fevers, other than my ears get warm.

I know that a lot of people out there have been suffering through a range of 
recent miseries, including the flu and various other cruds that are 
circulating through the population.  I have spoken to many of you who are 
frankly, feeling a whole lot worse than anything I have experienced during 
the whole transplant and recovery period.  My sympathy goes out to all you 
sufferers.  Because of all the infection running around out there, I have had 
to severely limit my potential for contact with other people, and have 
greatly reduced both visits to my house as well as field trips to the food 
stores, library, etc.  I should be able to resume a more 'normal' existence 
in a few months, when these winter diseases run their course, and the hopeful 
elimination of the Prednisone should give my immune system a relative boost.

I had a 4th bone marrow biopsy a week ago Thursday, and the initial results 
indicate that there is no leukemia evident.  The genetic test results are due 
sometime next week.

I have been in contact with people at the Bonfils blood center, and may get 
involved with their fund raising activities.  This would use the concept that 
my giving blood helped in the early detection of my leukemia, and, I believe, 
actively contributed to saving my life as well as making my treatment easier 
than it would have been if detected later.  They have mentioned some 
activities where I would tell my story to potential monetary donors.  An 
interesting sidebar to my Bonfils discussions is that their CEO and head 
doctor did not preclude the possibility of my contributing more blood through 
them in the future.  Basically, they have a 1 year moratorium after a person 
receives blood products from someone else, which I am still getting in the 
form of immunoglobulin once a week.  The purpose is to reduce the chances of 
transmitting the various blood born diseases, like AIDS and hepatitis., that 
can be transmitted through donation.  I got the impression that no one who 
has been through a bmt has ever volunteered before, so they will probably 
have to think this one through.  If this happens, mine may be the most 
expensive blood they have ever had donated.

Speaking of my blood.  My blood counts are now generally strictly street 
legal, with the platelets, white cells and red cells typically showing up in 
their normal ranges.  My hematocrit has been as high as 42, with is about 
what it was when I last donated blood back in March.  

In summary, I am basically healthy and very happy about my condition.  The 
incoming calls and emails has dropped dramatically since the last general 
update, but if anyone wants to get in touch, feel free.  It would be good to 
hear from you.

Dave