Sent: Monday, November 22, 1999 12:02 AM
Subject: T+31, evening, My 1 month birthday!

Well gang, it's been a while, and I had a relatively rough week, but things 
are now OK on this end.  Feel real good today.

Today marks my one month birthday since the transplant, and, coincidentally, 
5 months since my formal diagnosis on the Summer Solstice.  

Here's what's going on with my health, and why this week was what it was for 
me.  The gvh rash has not subsided, which, as you may recall, is also 
maintaining the graft versus leukemia effect.  The doctor's have increased my 
Cyclosporine dose to bring the levels of it in my blood up to the desired 
therapeutic levels.  This was based on blood tests that indicated that my 
original dosage of oral Cyclosporine was too low, and needed to be increased. 
 This is similar to what I went through in the hospital, when the IV 
Cyclosporine dose was changed a few times until they got things right.  They 
have to work this out with the oral Cyclosporine, since the blood levels are 
also affected by how much actually gets into my blood through my digestive 
tract.  The increased Cyclosporine levels are designed to keep the gvh within 
the mild range, so it doesn't start getting more serious.  It has also had 
the unfortunate side effects of causing hand shaking, which has made it 
difficult to type, hence no emails for a while, and had produced a strange 
feeling in my feet, that is hard to describe, annoying, and basically has 
made it real hard to sleep.  The second drug that they have started me on to 
deal with the gvh is a steroid call Prednisone that apparently deactivates 
the donor T-cells, which are the front-line of defense for the new immune 
system.  This and the increased Cyclosporine rates should keep the gvh in 
check, while maintaining the gvl effect.  The Prednisone has some weird 
effects, including turning my face real red, and seems to increase my 
appetite.  It can also have some nasty, long term health implications, but 
the dosage and time that I am likely to be on it are likely to minimize such 
problems.  

Now, some combination of the gvh and the new drugs and levels caused me to 
have a low level fever for about 5 days this week.  This was not too bad, 
other than continually worrying about if the fever was the result of the 
above or if I had some kind of infection/disease which could have put things 
into a whole new arena.  They did blood tests and a chest x-ray, and the 
results, along with the fact that my temp never got above 100.7, indicated 
there was no infection or disease.  That was good news.  I also developed a 
persistent cough, possibly coming from a whole range of potential causes.  I 
also finally got hit by the effects of the transplant, and, along with my low 
red cells, found me real weak all week, no pun intended.  So, basically, I 
was weak when I was awake, and couldn't sleep all week because of the drug 
reactions, persistent cough and low grade fever.  This was probably my worse 
week in the whole process, including the hospital stay, but compared to what 
I was expecting to go through, the entire experience still qualifies as a 
walk in the park on a nice spring day.  

There is no indication of any long-term health problems from the gvh, and as 
of this moment, it should still be working for me by cleaning out any 
possible remaining original stem cells.  By the way, I went through my 3rd 
bone marrow biopsy on Wednesday, this one with the intention of determining 
just how many of my old stem cells might still be around.  I will likely get 
preliminary results tomorrow, Monday, which are based on looking at the cells 
through a microscope, and more definitive results within a few weeks, the 
latter based on DNA sequencing to match cells to my old ones or my brother's 
new ones.  The idea is to adjust the Cyclosporine and Prednisone based on 
these results, since if the old cells are basically not there, they will be 
more aggressive in going after the gvh, and the converse is also true.

Today's trivia:  In the classic Hitchcock movie, The Birds, where is the 
film's location, who were the main female and male leads, and what 2 types of 
birds did all the damage?

Last weekend, before I got weak, and today, when I felt better, JoAnne and I 
went for walks around the Lake in Washington Park in Denver.  This is a real 
special place for me, as I used to do my Marathon training on the road there, 
hundreds and hundreds of laps.  I went 0.75, 1.5 and about 1 mile on these 
three walks.  We would have gone farther today, but it started snowing, and 
discretion indicated I should stop.  It was truly great getting out in the 
fresh air for a real walk.  The 1.5 mile walk really exhausted me, but even 
that felt good.

My release date from the apartment, unless something unusual happens between 
now and then, is still planned to be day T+60, or about Dec. 20, less than a 
month away.  I am eagerly looking forward to it, but will find myself in a 
similar isolation mode in the basement of our farmhouse.  I will be able to 
go for local walks, but will need to avoid the horses and dogs, so will 
likely walk in the subdivision across the street.  I have definitely weakened 
since coming into the apartment, and have lost a lot of weight, so my ability 
to rebound quickly and regain my strength soon is a little more doubtful than 
before.  However, I expect that it may be possible to get some easy x-country 
skiing in this winter, if there ever is any decent snow.  A 6 inch snowfall 
in Longmont should be enough so I can tour around the hay field.  The drugs 
also affect my ability to control my body temp somewhat, so this may be as 
ambitious as I might try for the coming season.  In any case, this is way 
beyond any expectation that I had for skiing soon, as my personal agenda was 
to wait 2-3 years before trying that again.  I also read a copy  of Runner's 
World at the clinic, and they have a medical advice column about how to 
train.  I am thinking of sending them my situation, and asking them about 
advice on how to gear up to run another marathon.  Seems a little far fetched 
to me earlier in the week, but the way I feel today indicates that it may 
really be possible.  I've already lost a lot of the weight.   They probably 
never got such a letter from a bmt survivor before.

I have been told that I may get permission to drive a car by next weekend.  
This will greatly ease a lot of problems around here, including boredom, 
freedom and ability to go out and get what we need.

Finally, one of the hardest things to deal with is not the medical stuff, but 
real world out there.  I am applying for Social Security Disability payments 
to cover my time lost from my business, both in the past several months and 
any in the future.  On the day I got the application from the SS people, they 
also sent me a letter from another office indicating that I refused the 
payments.  This never happened.  On top of that, I needed a certified copy of 
my birth certificate.  JoAnne contacted the people in Cook County, and they 
indicate I was not born.  Don't tell my insurance company.

Dave