Sent: Friday, October 08, 1999 2:39 AM
Subject: More than you need to know about my disease and bone
marrowtransplants

Hello to all my old and new friends.  I really appreciate all the support.  
There have been about 20 whole blood donor volunteers with the right blood 
type, and over 100 volunteers for platelets.  Overwhelmed seems the 
appropriate adjective.

I will be sending the volunteer lists to the Presbyterian St Lukes (PSL) 
vampires tomorrow.  One of the many ironies of this whole situation is that I 
have been growing and selling organic garlic for the last few years.  This 
was supposed to keep me away from all those bloodsuckers.  The PSL staff is 
divided into the platelet people and the blood bank.  Potential platelet 
donors will be contacted by phone to make arrangements.  Since platelets 
don't store well, they need to be taken every few days, beginning on my 
transplant day, October 21.  I am not clear if the whole blood donors will be 
contacted by the PSL staff or by me.  Since the blood keeps for about 30 
days, scheduling is more flexible.  I will find out by Monday when these can 
begin.  There have been a few requests to donate in my name at the Bonfils 
center in Denver West.  I realize this is much more convenient for you, but 
organizational issues seem to preclude it.  If I have time, I will look into 
this.  Unless I find out differently, expect to have to go to PSL.  Sorry 
about that.

For some strange reason, it makes me feel better to talk about all that I 
have gone through, and all that I expect to be going through.  

I have been a long term blood donor, and had never been refused for donation 
before my last try.  I went in to Bonfils in Boulder in May to donate the 
unit to complete my 8th gallon.  Went through all the usual questions about 
if I had sex with monkeys in certain African countries since 1976, and then 
got the finger stick.  The phlebotomist (look it up) put the capillary tube 
in the centrifuge to measure my hematocrit.  This is the volume percentage of 
red cells in the total blood volume.  I had always been about 42-43%, and the 
minimum for donating is 38%.  She looked real distressed as she told me that 
I could not donate because I was anemic.  My hematocrit was 27%, and a second 
stick came out at 24%.  I had lost about 1/3 of my red blood cells in the 8 
weeks since the previous donation.  

I am a long term vegetarian, and my instant denial put my thoughts toward a 
vitamin B-12 or iron deficiency.  Low folic acid can also cause anemia, but 
highly unlikely with my diet.  Anyway, I went to my Kaiser doctor for a 
physical.  They took blood for testing.  A few days later he called me with 
the results, and his voice was also highly agitated.  He said that I was 
anemic, and that some of my cells looked a little funny.  He gave me the name 
and number for a specialist that he referred to as a hematologist.  My denial 
told me that that didn't seem too bad.  I called the next morning, and the 
phone was answered "Rocky Mountain Cancer Center".  That was enough to ruin 
my day.  This introduced me to a fact of life with modern health care.  
Unless you are in dire circumstances, (it probably helps to be showing some 
blood) it takes about 10 days to see anybody.  Their business is that good.  
Anyway, I went in for a consult with the oncologist.  He had further results 
from my Kaiser blood test.  All the nutritional causes of anemia were 
eliminated.  My vegetarian diet was good enough to restrict the possibilities 
to the additional results from the blood tests which had taken longer to 
analyze.  The computerized analysis had printed out a list of potential 
causes of my particular pattern of cell counts, and the shortest word on the 
page had about 20 letters.  My choices now included myelodysplasia (what I 
have), myelofibrosis, and various sorts of bone cancers.  To quote WC Fields: 
Frankly, I'd rather be in Philadelphia.

The next step, about 10 days later, was a bone marrow biopsy to narrow down 
the possibilities.  They stick a needle gadget into your pelvis (from the 
back side) and take a core, sort of like how they count tree rings.  I took 
another 10 days until June 21 when my life changed in a major way.  The 
diagnosis was myelodysplasia (MDS), which is a condition that almost always 
worsens into acute myelogenous leukemia (AML).  They were still waiting for 
one more test result, an analysis of the chromosomes in the stem cells from 
the marrow.  Another name for my disease is refractive anemia with excess 
blasts.  Refractive means that diet won't fix it, and the excess blasts are 
the deformed stem cells that should be turning into healthy blood cells, but 
aren't.  

A major impact on all of this was on my engineering business.  I have been 
doing okay for several years, but things started to boom this last spring.  
People starting calling from out of the blue.  I had to turn down a lot of 
contracts, including the energy design on the new building going on at the 
Naropa Institute campus in Boulder.  I was writing a proposal for NREL work 
that I had a pretty good chance of getting, probably would price out at about 
$80K per year for 3 years, when the phone rang.  It was 5:30 on a Thursday, 
and the proposal was due the next day.  A second oncologist I had seen had 
the chromosome results.  I had a deformity in a chromosome which is highly 
correlated with MDS.  This is called an inverted 3 mutation.  The mutation is 
not found in other cells in my body, just in the stem cells.  These cells 
reproduce rapidly, and are more likely to mutate than most other cells.  
Anyway, I asked the doctor what the implications were of the mutation, and he 
said that it meant it increased the chance that I would transform into full 
blown AML sooner rather than later.  I asked what he meant by sooner, and he 
said that he wouldn't be surprised if I was in the hospital within 3 weeks.  
I put down the phone and said out loud "Fuck this proposal!"  

The funny thing about all this was that I showed absolutely no symptoms 
outside of the anemia, which left me weak with no stamina.  Frequent complete 
blood count (CBC) tests showed that while my red cells were low, my white 
cells and platelets were, and still are, in the normal range.  If I didn't 
tell you or we didn't go running, you would not know I was so sick.  

I was referred to the bone marrow transplant (BMT) team at PSL.  When I 
called to get an appointment, and remember, they don't make appointments for 
anybody who is healthy, they said that I could see a doctor in 3 and a half 
weeks.  I told them that I may not be alive at that time, and they found a 
slot for me in the typical 10 days.  

Now, let me tell you about BMTs.  The basic process is pretty simple in 
concept.  I have referred to it as an oil change.  First they kill off my 
stem cells with chemotherapy, lots of it.  The idea is to kill off every last 
one of the little buggers.  Otherwise, it is likely that it will just 
repopulate the marrow after the transplant.  Then they use an IV to put the 
donor stem cells into a vein, and the little guys swim through my blood 
system, find appropriate homes in the marrow of my many bones, and, 
hopefully, take root (engraft).  A major issue is the closeness of the match 
between my cells and the donor cells.  Most of your cells have certain 
proteins that the body's immune system uses to identify whether it should be 
there or not.  In humans, there a 6 human leukocyte antigens (HLA) that are 
used to type the appropriateness of donor cells.  You may be more familiar 
with organ transplants, where the donor organs can be rejected by the host 
immune system because the cells are not totally identical  Well, it is 
reversed in a bone marrow transplant.  My immune system will go away when 
they kill off the stem cells.  I will inherit the immune system of the donor. 
 This is really too bad, since I haven't had as much as a cold in the last 5 
or 6 years (remember all that garlic).  They will do BMTs if 5 of the 6 HLA 
proteins match.  This can either be from a relative or an unrelated donor.  
There is a 25% chance of a perfect match (6 of 6) from a sibling.  Unrelated 
donors are almost always found through the national bone marrow data base.  
It turns out that I was registered in that data base, but, have no fear, I 
have recently been removed from it.  Anyway, I have one brother, and he 
turned out to be a perfect match.  This is about the only real lucky thing 
that happened to me all summer.  This greatly reduces the chance of bad 
immune responses from his stem cells against my various body parts, which are 
generically called graft versus host disease (GVHD).  There are other 
possible genetic differences, even in a perfect sibling match, that can cause 
GVHD, and it can range from minor to real severe.  It is all statistics here, 
and there are no guarantees for any single host and donor.  

After the transplant and before the donor cells engraft I will have no immune 
system, reduced platelets and reduced red blood cells.  This is why I will 
need the donations of blood products.  I enter the hospital next Friday, Oct. 
15, to begin the chemo.  The transplant is scheduled for Oct. 21.  I will be 
in the hospital, if things go well, for about 4 to 6 weeks.  They have a 
special, 10 bed, isolation unit at PSL just for BMT patients.  If the 
transplant engrafts and my cell counts rise to normal levels, I will be 
spending the next 8 to 10 weeks in an apartment a few blocks from the 
hospital.  This is to allow very frequent visits for checkups, tests and 
medications.  I will still be reasonably susceptible to infections during 
this period.  If all is well after this vacation in Denver, I should be back 
at my farm near Longmont by early Spring.  I will then be living in relative 
isolation in my house, and still visiting the doctors every week or so.  

This is far from a guaranteed process.  After all, they do call it the 
practice of medicine.  My chances of getting through this alive and healthy 
are improved by the perfect sibling match, my relatively young age, my good 
health, my lack of previous cancer treatment, the relatively recent onset of 
the disease and my belief that the BMT doctors at PSL are among the best.  
Basically, if I get through the first 6 months or so, my chances of full 
recovery are real good.  I look forward to inviting all of you to a party at 
the farm when I get over this.

I will have email access in the hospital and thereafter, and will try to 
continue to deluge you with more information on this than you probably want 
to know about.  The nurses have told me that some days I may tell you that I 
"feel like crap", but bear with me.  I ask that you continue your good 
thoughts and, especially my old friends, that you lend any support that you 
can to my wife JoAnne, while we are going through this.  

That's all for now.  Enjoy every day of your lives.

Dave