His E-mail Bulletins

Bulletin No. 1 from the hospital
Date: Mon, 10 May 1999 03:36:42 -1000
From: "John E. Hall" <jeh@lava.net>

I have a loaner laptop, and have managed to get hooked back up to my
e-mail account, so I'll do mass mailings periodically to keep everyone
up-to-date.

Help, someone! I seem to have misplaced Mary Lou's e-mail, and I want
to add her to this mass mail list.

Today's Bulletin: "NO, I WON'T CRY UNCLE!!!"
The diagnosis is acute myelogenous leukemia; the website for Leukemia
Society has some excellent descriptive material. Oncolink has hot links
to many good resources for both lay level understanding and professional
level understanding.

My first course of chemotherapy was completed about 11:00 p.m. Saturday,
a cause for much internal celebration. I managed to get through it
without any significantly awful side effects. I have a very wide ranging
support network (thank God) and my spirits are still high. The concept of one
month in hospital, two weeks vacation at home, another month in
hospital, another two weeks at home, and a third month in hospital was very hard
to accept. So long as it translates to 80% chance of full remission, I'm
hanging in.

I AIN'T DOWN YET!!! I expect hair loss next week, and am not sure,
after all these years of wearing a beard, that I'll survive the shock of the
real me. I've had offers of fake beards, borrowed wigs, etc. Even
considered having a Picasso face painted on my bald head (my
hematologist/oncologist nixed that one--fear of a contact dermatitis complicating things).

My first bone marrow biopsy, to confirm full suppression of the marrow,
is about 1:30 p.m. today. If fully suppressed, I start on infusion of
"leukines" to stimulate regrowth. Unfortunately, the poisons for the
malignant white cells also are capable of damaging heart muscle; I'll be
having a MUGA heart scan to compare to the baseline done before I
started to confirm (I hope) no damage.

It's a bummer of a diagnosis, and I'm really glad I've had lots of
practice in my life for being a fighter!

More later. . . ALOHA, Jack

(somebody please forward this one to Mary Lou, thanks)

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BULLETIN No. 2
Date: Tue, 11 May 1999 04:49:27 -1000
From: "John E. Hall" <jeh@lava.net>

Just got the good news!! My bone marrow biopsy yesterday at 2:00 showed
"complete remission," meaning all the evil guys got wiped out with the
one week continuous course of chemo. This means no further chemotherapy
during this hospitalization, and they start today the encouragement of new
marrow by daily 1-2 hour infusions of marrow stimulating factor. My current
white blood count is essentially zero, which is why I must stay a while
protected from all those evil germs outside these walls (of course there are NONE
inside a hospital!)

I face two more courses like this one to get my good prognosis, but
since following my first two weeks "vacation" in beautiful Kailua it is
doubtful there will be significant new malignant cells, the course shouldn't be
as stormy concerning fevers, chills, and worry about whether the fever is
from the lysing of cancer cells or from superimposed infection. This time
around, all my fevers turned out to be from dying cancer cells (YAY! the
one time it's OK to cheer death).

Depending on how fast my suppressed marrow recovers, I MAY get to go
home before the original estimated June 1. I MAY complete the full three
courses before Labor Day. I am delighted that I got through with no
significantly bad side effects, and pray the same will be the case
during course 2 and course 3. I must remember to check with my hematologist
about side effects during follow-up courses.

More later

Aloha, Jack

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Bulletin No. 3 -- The Waiting Game
Date: Fri, 14 May 1999 02:35:02 -1000
From: "John E. Hall" <jeh@lava.net>

I feel fine; my energy level is (so far) high, some lethargy expected
later; I still have all my hair, but that's projected to depart next
week.
I've been shopping on the internet (L.L.Bean) for a cotton hat that I
can use to protect my scalp from this Hawaiian sun. I hate hats, so am
being picky. I had planned a Picasso face painting on my head for fun, but
the oncologist nixed that (concerns for developing a contact dermatitis).
My domain is small, and my only complaint is I'm getting cabin fever. Pace,
pace, pace. Today marks 2 weeks in hospital, estimated 2 to go. WAIT,
WAIT, WAIT!

My red/white blood counts are "stable", meaning the blood from donors is
slowly waning from natural attrition, since I haven't started manufacturing
replacements yet. I get infused platelets every 2-3 days, and red cells
1-2 times a week on average. The wait is for my marrow to kick in. I
get a marrow stimulator IV daily, and I do a lot of internal coaxing of my
marrow. The goal is 800 granulocytes = go home. I have 1000 TOTAL
white cells, which is why I must stay in this protected environment. My
doctor marvels at how I'm "sailing through" this; I've tried to tell him about
the Hall gene pool, but I guess that concept is hard to get across.

Send some good marrow-stimulating magic rays my way! I want to go home.
(I am grateful for feeling as good as I do. Just impatient. Does that
sound like a Hall or what?)

Aloha, Jack

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BULLETIN NO. 4--Still Waiting + Altered Plans
Date: Mon, 17 May 1999 01:35:13 -1000
From: "John E. Hall" <jeh@lava.net>

I wait, read books, wait, do puzzles, wait, listen to audio tapes, and
wait. I get platelet infusions about every 2 to 3 days, and red blood
cells about every 3 to 4 days, plus a daily infusion of a bone marrow
stimulator. This morning's blood tests showed a POSSIBLE, TENTATIVE
start of regenerating marrow, not enough to really get excited about. My
doctor said today my stay MIGHT be shortened by about 5 days due to the marrow
stimulator, meaning about another week in here. My hair started staying
with my comb yesterday, and after a shower, with my towel. So far
"little" clumps, no big ones. Still can't tell whether I'll just get thinning or
will get total loss.

I feel energetic, alive, impatient with my small word; also feel well
cared for and optimistic. My support is consistently here, with phone calls,
visits, cards. My chocolate stache is waning from my nibbling. Paul
and a neighbor are bringing me in a gourmet meal on Wednesday to break the
monotony of the institutional food. (I've had two previous bring in
meals, which were GREAT treats).

The altered plans are: instead of a second month in the hospital, when
the second course of chemo comes, it will be a shorter course than the first
with the same chemicals, i.e. 5 consecutive days of one (as opposed to
7) and 2 burst doses of the other (as opposed to 3), THEN I WILL GO HOME
AND BE FOLLOWED AS OUTPATIENT! After recovery from course two (marrow
regrowth), I have a third 5-day course in hospital, followed by
outpatient again. The not before revealed news is that the third course MAY have
more significant side effects--it is the same class of drug, but much more
potent, with the added risk of "rare" neurological effect, mild to
severe, irreversible. This consists of affecting the cerebellum, balance, and
gait. MOST recipients DO NOT get this effect. The more potent chemical
is considered the major reason for the 80% permanent remission, so in my
opinion is worth the risk.

I STILL WON'T CRY UNCLE!!

Aloha, Jack

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BULLETIN NO. 5 -- Eureka!!
Date: Sun, 23 May 1999 07:23:15 -1000
From: "John E. Hall" <jeh@lava.net>

I am delighted to report that this morning's labs showed significant
start of early marrow recovery; the oncologist says once it starts, it becomes
a logarithmic curve, and rapidly returns.

It has been very discouraging going through this waiting game, having
mysterious fevers requiring lots of tests, and experiencing some passing
doubts that I would ever grow blood cells again (and having been totally
dependent on donated blood for weeks). Plus cabin fever!!! What a small
world to spend a month in. I wouldn't wish this ordeal on anyone.

My main residuals now are almost no hair, and tender gums and mouth,
altering any fun in eating. My appetite has remained good, and I've
looked forward to friends bringing in real food occasionally to break the
monotony of institutional food. I can't begin to describe the joy at this
morning's lab results, and the prospect of getting home within the next few days
for a two week rest before starting the whole grueling thing again. It's a
blessing that, because my oncologist believes I responded to
chemotherapy extraordinarily well, with minimal side effects, that he intends to do 5
days chemo to kill off the marrow again, then send me home for the next
waiting game, with daily visits to outpatient. Even that sounds like
heaven--to be in my own shower, and sleeping in my own bed while I wait
for my marrow to recover.

Of my many life challenges, this has been the biggest and the toughest.
I had been lulled into serenity by my belief that I had endured so much
over the years that there could be nothing left on my horizon but peaceful
sailing. How naive (yet somehow a comforting naivete). I'm so glad I'm
a survivor and a fighter! If ever I were to "cry uncle", I'm convinced I
would wither up and fade away forever. I love and enjoy life, and am
happy that my 15 years in Hawaii have been warm and comforting--I have EVERY
DAY in those 15 years taken time to see and hear the birds, flowers, and
rainbows which make this such a paradise. My observations of the world
will be even further enhanced by this enforced imprisonment. I hear
Beethoven's "Ode to Joy" playing in my head over the prospects of being
home in a few days!

Aloha, Jack

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BULLETIN No. 6--Home for a while, but just barely
Date: Wed, 26 May 1999 15:52:36 -1000
From: "John E. Hall" <jeh@lava.net>

Well, I've been home 24 hours, reveling in the smells, sounds, etc., and
reacquainting myself with living here. Almost one full month in that
little room, with horrible feelings, tests, transfusions, etc. Now I
should be home for about two weeks before starting the next course.

I almost didn't get to come home. On Monday I got the morning lab
results from the nurse (they printed them out for me each day); I
thought they were stunning and looked like "home," the residents thought
they looked great and like "home," then my oncologist came in all
disturbed, and thought they showed a really bad trend, the malignant
cells probably were growing right back, and I'd have to stay another
week or ten days for an immediate second course of chemotherapy; and, in
addition, if confirmed, my prognosis was down to 50% chance for even
getting into remission, with remission being 3 months to 3 years. Talk
about a blow between the eyes!! He said there was a remote chance it
could be excessive stimulation from the marrow stimulator, but in his
experience it was usually "refractory leukemia" and not good news.

I put in a terrible 24 hours. He did a bone marrow biopsy early Monday
afternoon, and said the results, not back until at least noon on
Tuesday, would show what was going on and confirm or refute his
expectations. I put on a brave face, spent a lot of time steeling
myself for more horror before going home, and a less-than-thrilling
prognosis. Then, like a miracle, the oncologist came bouncing in
Tuesday morning, without the marrow results, with a cheery: "How would
you like to go home today?" Guess what my answer was.

On that morning's peripheral blood test, my white cells had surged up to
6800 (from 3400 the day before), my platelets were normal, my absolute
granulocyte count (the good guys) was up to well within normal range,
and the disturbing, immature cells he had seen on Monday had reduced
from 22% to 14%. He decided that, since the infectious disease doctor
had stopped all my antibiotics at 5:00 p.m. the day before, that my risk
was decreased, and that whatever the marrow showed, I would be coming in
for a second course anyhow, so why not have a rest at home and he would
call with the marrow results about mid-afternoon, with the true scoop
and decision on whether I would be home 3 or 4 days or 2 or more weeks.

I'm home for at least two weeks. WHEW!! I guess the Hall genes just
don't deal the usual way with malignant white blood cells. My marrow
did NOT show any malignant cells, as he had anticipated, but neither was
it normal. It was loaded with immature, non-malignant cells. The
official name is "myeloid dysplasia" and the informal term is
"pre-leukemic state." He said since most people can live for 3 or more
YEARS with no treatment with this type of marrow before it bursts into
leukemia, I should be able to make it for a few weeks without great
risk. Talk about a cliff-hanger.

Home has never looked or felt so marvelous, even with all its "warts"
(dry rot on some window sills, trim needing paint, shower stall needing
repair, etc.) I am enjoying it "one day at a time." When I go back, it
will be for a course of chemo, then right home, to be followed as an
outpatient, with daily visits for transfusions, blood tests, etc.

My prognosis is not the really poor one, but it is kind of in limbo
until he sees what happens with the second course of treatment. My
major residuals are as reported previously: very little hair, and sore
gums. I'M HOME--EUREKA!!!!

Aloha, Jack

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BULLETIN No. 7 -- Home 9 Days. .WOW!!
Date: Thu, 3 Jun 1999 12:10:35 -1000
From: "John E. Hall" <jeh@lava.net>

Still in limbo. Some difficult choices are on my horizon, none of which
are what I'd like to hear.

At one week home, I had a visit with my oncologist, and my blood counts
were still good, except for persistent anemia (Hemoglobin 9.8, should be
14 or more). No more risk of infection. Mouth almost totally clear;
sore gums gone (going to eat corn on the cob tonight!!!), and only one
small spot left where gums haven't returned to normal. HOWEVER, my
platelet count has soared to twice normal, and my white count is
climbing to the top of the normal range. Had a long discussion with my
doctor, and the choices are not ideal. The clear decision was to wait
one more week; repeat blood counts next Tuesday after two weeks home.
IF they show stability (not continuing to climb, which would suggest
possible return of malignancy) have two options; if climbing, no choice
but go back in for the STRONGEST chemo, as if starting over, with much
higher risk of succumbing to the treatment rather than the disease. And
with added risk (although small) of permanent neurological damage in
exchange for a mediocre prognosis of survival "for a while."

Choices if stable: wait and see how long I remain in the "myeloid
dysplasia" state, with periodic checks. Could be 2 months to 2 years.
However, if leukemia recurs from current "pre-leukemia" state, prognosis
for obtaining complete remission is poor. Could happen with strong
chemo, but could also signal a downhill course. Other choice if stable:
proceed anyhow with second course, hoping to get full remission with the
stronger chemo, but gambling on getting anywhere, and risk of triggering
downhill course. Not exactly "the lady or the tiger"; more like the
choice between the room containing an angry cobra, with me acting as my
own mongoose, versus the room which requires wrestling with a crippling
beast who, if you win, leaves you with some life, but with length and
quality of same uncertain.

I'm really grateful for my support network. The calls, notes, and
letters have really helped me through the difficult times so far. I
still feel positive, especially since I know my basic health before this
disease was excellent, and that even though I'm past the statistical age
for good results (age 65), my personal prognosis is better than average
due to the Hall genes, and due to my having no chronic diseases
weakening my defenses. My oncologist totally agrees with my feeling. I
keep all the positive feelings flowing, and actually FEEL solid healing
taking place. I feel better every day, and more ready to go on with a
normal life. Right now, the most difficult thing is dealing with the
uncertainty. I've gone into my "here and now" and "one day at a time"
mode, with success so far. I WILL NOT CRY UNCLE!! NO I WON'T, AND YOU
CAN'T MAKE ME!! (Any Hall out there who doesn't recognize that feeling?
I doubt it).

My love to all,

Aloha, Jack

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BULLETIN No. 8 -- Some Good News
Date: Tue, 8 Jun 1999 15:57:40 -1000
From: "John E. Hall" <jeh@lava.net>

Well, I guess we have to charge it up to "those Hall genes." I had my
visit with the oncologist today, and he is thrilled to report that (and
mystified by) my marrow's positive activity. From the peripheral blood,
he now believes my marrow is regenerating itself back to normal, that I
am going into remission from the first treatment, and that what he saw
last time was not truly myeloid dysplasia, but my marrow busily working
to get back to normal. I have the M2 subtype of leukemia, and he said
you don't generally see this pattern of recovery with my type of
leukemia. However, it is GOOD NEWS, in that it appears we will be able
to go back to the original plan (and get back to my 80% chance for full
remission).

I get two more weeks rest at home preparing for treatment No. 2, which
now is planned, as it had been originally, to be the same two chemicals,
slightly shorter course (called "consolidation" of remission). To
verify what he believes is happening, next week I go in for a blood test
only, then one week later for a bone marrow biopsy to verify remission
(as opposed to myeloid dysplasia). Then into hospital for 5 days of
continuous infusion of one chemical, and two burst courses of a second,
followed by home, with daily visits to outpatient for tests,
transfusions, etc. as needed, for about one month, then another minimum
two weeks at home resting before treatment No. 3 (the heavy duty
chemical).

My only remaining side effects from the first course are one small area
in my mouth where the gum receded from a tooth (about 90% healed, and
basically now asymptomatic), and dry skin, with facial flaking and
rash. My appetite is, as it always was before this diversion,
excellent. I sleep well. My red blood cells are building nicely, and
my stamina is ALMOST normal. I feel encouraged, and am very grateful
for all the prayers and support I've been getting from all over--all
those "good rays" have converged on me and have aided, as has all the
love beamed my way.

Love to all, Jack

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BULLETIN NO. 9
Date: Tue, 29 Jun 1999 12:52:16 -1000
From: "John E. Hall" <jeh@lava.net>

Well, here I am again, giving them a chance to get rid of the rest of
the hair they missed on round one. I got some good news during outpatient
follow-up last week, which was that my bone marrow biopsy (Wednesday,
6/23) confirmed I was in "solid remission" from my leukemia. It confirmed
that what he had originally diagnosed as "resistant" leukemia with a poor
prognosis (due to marrow hyperactivity, interpreted at first as myeloid
dyplasia) was indeed the Hall way of normalizing marrow destroyed by
poisons. My prognosis is back to 80% chance of complete remission. I
came in hospital Monday 6/28, 8:00 a.m., started the second course of
chemotherapy, which will be 5 days course of the same two chemicals as
before (as opposed to 7 days previously). No new or major side effects
expected, only a replay of the mild diarrhea, the dry skin, the sore
gums. I will go home Saturday, hopefully a.m., July 3, to be followed in
outpatient oncology. Jill will take one day, Chris one day, and Paul
any remaining days to drive me in for tests, transfusions, etc. during
recovery.

If all continues as expected, will recover by second week in August,
then enter for the third course of more potent chemicals. (Jeff in Maryland:
sorry about the delay in my second course; just give a call late July or
early August to check the best dates. Visit is definitely OK, but how
available I'll be to leave the house for fun is in question)

Thanks for all the good support

ALOHA, Jack

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BULLETIN No. 10 - Home Again, Home Again, Jiggety Jig
Date: Sat, 3 Jul 1999 16:31:24 -1000
From: "John E. Hall" <jeh@lava.net>

I'm delighted to report I completed another 5 days of being poisoned,
and came home this morning (Saturday) about 11:00, with so far only an
intermittent queasy stomach from the chemo. This time I get to go
through the plummeting red cells, white cells, and platelets while being
following outpatient. My first OP visit is Tuesday A.M. Recovery
should be about 5 to 6 weeks, then the final course, supposedly also 5
days.

My prognosis is good, my spirits are up, and I WON'T CRY UNCLE!!!

Aloha, Jack

PS to Bill: The picture came through great--could the dog be named
"Lucky" by any chance? By the way, the third course is to search and
destroy the hiding or resistant leukemic cells; he claims that course is
the solidification of the good prognosis. I believe him.

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Finally!!: BULLETIN No. 11
Date: Sun, 8 Aug 1999 13:42:07 -1000
From: "John E. Hall" <jeh@lava.net>

Finally I can report the beginning of recovery of my bone marrow
following course number two of chemo. Yesterday was day 41 (counting
from day 1 of receiving the chemo), and my blood AT LAST showed a surge
of white cells and specifically of neutrophils. This ends the
self-imposed (and doctor recommended) self isolation, and should herald
a rapid rise of resistance. My red cells, however, are still quite low;
however, they are fortunately showing attempts at regenerating. I did
get today off from an outpatient visit; really a great feeling following
34 consecutive days of being checked and being disappointed.

Last course I was at about this point on day 28. I was really concerned
about whether my marrow was permanently suppressed this time, and on the
past few days before yesterday's good news, my doctor was beginning to
show concern also. Must be that Hall gene thing again.

For about the past 5 days I've been feeling more energy, stamina has
increased, in spite of lack of blood tests showing marrow recovery.
This is interpreted as the recovery of all my other body tissues from
the effect of the poisons; it is known it can really effect heart,
liver, kidneys, muscle, etc. So I'm apparently back on the good track
again. I will get about 3 more weeks to recuperate before going back in
(probably kicking and screaming) for the LAST course: 7 days of "high
dose Ara-C". He states the dose is 20 times the previous course; and he
states that he expects me to tolerate it well, since I got minimal side
effects to the first two courses. I'm delighted about his positive
thinking, but I'm concerned about the length of marrow suppression I can
expect. I'll ask lots of questions, and will try to avoid that Hall
thing about "questioning authority" so completely that I refuse to
participate.

I look forward to the day I can look in the mirror and see ME looking
back, estimated at 6 to 9 months, with hair and with glorious pink color
(as opposed to seeing a combination of a very white Banquo's ghost
combined with an albino lab rat, with skin showing through what little
remaining white hair I have left on my head).

I feel fortunate to have all the great support from mainland U.S. and
Oahu; I doubt I could have avoided severe depression without all the
positive input I've had. I'm once again expecting the ultimate result
of a prolonged ("permanent"?) remission.

With love and aloha,

Jack

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BULLETIN No. 12--5-1/2 Weeks after No. 11
Date: Thu, 16 Sep 1999 16:11:16 -1000
From: "John E. Hall" <jeh@lava.net>

Still waiting. . . . . . I found out yesterday I'm apparently
winning at a game of "Stump the Experts." I wasn't even aware I had
been playing. After very slow progress in recovering all three blood
series (red cells, white cells, platelets) in my peripheral circulation
following treatment No. 2, he did, one week ago Wednesday, a bone marrow
biopsy to get a handle on what's going on. Yesterday, armed with the
results of that biopsy, he still isn't exactly sure what is going on.
He has sent copies of my records to two different mainland U.S. mentors
asking their opinion on "wha's happenin'", and how they would proceed
from this point. I have 60 - 70% cellular activity in my marrow; normal
is 40 - 50%; this means plenty of attempt at recovery, but apparently
"stunned" stem cells, which have forgotten how to get those cells out
into my circulation once they complete maturation.

There is no bad news in either the peripheral blood results from the
past two weeks, or from the marrow biopsy results (i.e., no malignant
cells, no untoward immature cells, ample amounts of each of the three
above-named series in the marrow, slowly growing numbers in my
peripheral circulation, etc.) However, now at day 80, I'm still about
where I was at day 30 of the first course in relation to red, white, and
platelets in my peripheral circulation.. Yet, there's nothing seemingly
bad going on. Go figure!! My white cells are at 4,000 (low normal
4,800); my reds are represented by hemoglobin of 11.2 (low normal 14),
and my platelets are at 90 (low normal at 140). And they progress
slowly from week to week.

I have very good energy, am pink, have hair growing (3/4" beard, 1/2"
scalp), and feel excellent. Following his "judgement call" yesterday, we have decided to
indefinitely postpone the third, high-dose treatment, with the idea we
can't see where it would add anything helpful at this point, and
increases my risk of dying from treatment rather than disease.
Statistically, even though all three courses are currently given to all
age groups with my type of leukemia, there is little evidence that the
third course consistently improves prognosis after age 65. I hit 67 on
August 18. Weighing that against the risks, I think we've made a good
choice. He will follow me regularly, and design any future treatment
according to what my (very independent Hall) marrow decides to do from
this point on.

I still feel very positive, but I must admit occasional periods of fear
and trepidation. My support system (both here and mainland U.S.) has
remained excellent, and I'm successfully living each day to the fullest,
enjoying my birds, flowers, rainbows, etc. My hunch is that my marrow
will recover from the "stun" and suddenly I'll have normal peripheral
blood. In the meantime, I eat well, sleep well, and feel good. That
counts for the most. I'm aiming to return to my contract job in
December.

With aloha and love,
Jack

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BULLETIN No. 13 -- What the. . .?
Date: Fri, 15 Oct 1999 12:52:09 -1000
From: "John E. Hall" <jeh@lava.net>

Well, I'm still in "wait and see" mode. Two days ago I had my latest
blood test, expecting more normalization of the three blood lines (red
cells, white cells, and platelets) and got instead partial improvement,
partial worsening, and partial "no change," which resulted in a (still)
puzzled hematology/oncology expert. Red cells showed the "no change"
(neither significant increase NOR decrease, but stabilization at "slight
anemia"). White cells showed "partial improvement" with an increase in
total numbers to within the normal range; HOWEVER, only about 25% of
them were normal granulocytes (the good guys, and the ones which become
malignant in my type of leukemia, and of which you want 60 to 70%). The
rest were immature monocytes (signaling premature release from the
marrow before they complete their programming to become one of the
normal cells). Last, the platelets showed a DECREASE in numbers from
71,000 to 39,000 (Low normal = 150,000). Needless to say, my picture
doesn't fit any text book.

It MAY signal "myeloid dysplasia"; however I confused the picture after
my first course of chemotherapy by doing this same thing, and then
normalizing all three series to "good solid remission" (the exact words
of my hematologist/oncologist). BUT, I did it in about 8 weeks. I am
3½ months past my second course, and apparently only at the point of
recovery that took 2 months before. OR, I'm in trouble with reversion
"only" to myeloid dysplasia, which has an "iffy" prognosis at my age.
There are several approaches to "controlling" it, but not much hope of
long-term delay of return of the malignant white cells, and with any
recurrence, prognosis goes way down.

Again, I MAY be headed for another "good solid remission" instead.
Anyone got a working crystal ball?
Plan is to repeat blood test in one week (next Wednesday) hoping for
reversal of the plummeting platelets, and appearance of more mature
granulocytes; then the following Wednesday another office visit, blood
test, and depending on results, another bone marrow biopsy to "try to
see what's going on."

I'll keep you all posted.

Much Aloha, Jack

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BULLETIN No. 14--AHA!!! The Villain Leaps and Twirls his
Moustache
Date: Thu, 21 Oct 1999 13:30:33 -1000
From: "John E. Hall" <jeh@lava.net>

I had follow-up blood tests yesterday, and, well, the villain stopped
skulking in the closet and came out again. . .I'm in early recurrence of
leukemia, with white count of just under 40,000 (8,000 to 8,500
considered approximately high of normal range). Only a small percent
of the white cells are normal granulocytes. Fortunately, the platelets,
although low, are not critical (I don't need a platelet transfusion
immediately); the red cells are about the same as one week ago, so no
red cell transfusion right away either.

I'm re-entering the hospital tomorrow morning, Friday 10/22, 8:00 a.m.
Hawaii time, scheduled for surgery for placement of a new central line
(Hickman catheter), and the third course of chemotherapy (the same as it
would have been if it had been used earlier as a "consolidation"
treatment--6 days of HIGH DOSE Ara-C). This is called "re-induction"
chemotherapy, meaning we're back at square one, trying for another
remission. I'll be in hospital 7 to 10 days, depending on my response
to the high dose stuff, then followed up by daily outpatient visits as
before. I pray for a max of 7 days in house for my sanity. Prognosis
is much worse than previously, partly due to my age, and partly due to
failure to maintain remission more than a few months.

I will have the portable computer with me, and will welcome e-mail (same
address). I AIN'T DOWN YET! ! ! ! I've gotta, like Molly Brown, stomp
out some more of those aggravating piss ants!!!

Aloha, Jack

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BULLETIN No. 15 - Go, Stompers!!! Death to the Piss Ants!!
Date: Sat, 30 Oct 1999 16:55:19 -1000
From: "John E. Hall" <jeh@lava.net>

I completed my in hospital "re-induction" chemotherapy Thursday morning
about 1:30 a.m. (12 doses of HIGH DOSE stuff). I seem to have gotten a
good response -- all the piss ants were gone, and my platelets, red
cells, and white cells had all responded appropriately. I had minimal
side effects, controllable by medications. The white cell count went
WAY low (which was good, since they were 99.9% bad guys, anyhow). They
drew bloods at 6:00 a.m. to determine my response, doctor came in at
7:15 a.m. and said: "You can go home if you feel like it, and be seen
outpatient for follow-up every other day for the first week" (might
change to daily as full effect of poison ensues). "Only first, I want to
give you one unit of platelets and two units of packed red blood cells."

I had fretted and stewed during the 6 days over the possibility of
neurological damage from this high dose stuff, which can appear at any
time during the course, even the last day, and often is permanent. I
have successfully avoided all that. I felt clearly that I had been hit
with something hard, yet I felt good - hunch that we'd taught those piss
ants a lesson they would not soon forget. The infusions on Thursday
were maddeningly slow and uneventful; I expected to get home by late
afternoon, but was delayed due to slow blood bank, slow infusion, etc.,
so I left at 6:45 p.m., DELIGHTED to be free again.

I've taken good care of myself, taken it easy, rested, slept, eaten. My
first outpatient visit this morning I had good blood count numbers,
needed no additional blood products. I feel good today, within the
parameters of feeling like I'm carrying a 2,000 lb anchor wherever I
go. I have tomorrow off. I have high hopes. Psychologically, I stay
grounded 95% of the time. I have excellent support from many sources.
I do still have panic occasionally, in those wee morning hours when I
wake up and something doesn't "feel quite right." I have 20%
statistical chance of a 3 to 5 year remission (if indeed we determine I
am going into remission rather than suppression), and an 80% statistical
chance of a recurrence in 3 to 5 months.

One day at a time. . .I AIN'T DOWN YET!!!

Aloha, Jack

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Bulletin 16 update
Date: Thu, 11 Nov 1999 13:36:29 -1000
From: "John E. Hall" <jeh@lava.net>

Greetings to family and friends:

     I am writing this brief e-mail on John's behest. He is back in the
hospital, this time with what he believes to be a transfusion reaction
to some blood products that he received earlier in the week -- with
fevers up to 102 and truly whanging headaches -- both his doctor and he
were concerned about the possibility of an infection, so he was
admitted back into Queens Hospital this morning (Nov. 11) about 11 AM.
The plan is to monitor him for a few days, in order to sort out what's
going on. His electronic communication ability is slightly hampered
right now by not having the laptop that he's been using previously,
which is why I'm sending this e-mail out from his computer at home. I'll
be checking his e-mail, so any messages sent here I can print out and
deliver to him. His spirits are good, and I'd like to take this
opportunity to thank each and every one of you for your continued
concerns, thoughts and prayers.

                                  paul beck
                                     for
                                       Jack Hall

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BULLETIN No. 17 -- Cat and Mouse/Fevers with and without
Infection
Date: Thu, 2 Dec 1999 16:29:03 -1000
From: "John E. Hall" <jeh@lava.net>

These past three weeks have been the roughest on me since my diagnosis
on April 30. And I'm hanging in. . .
It has been painful to deal with recurrent, episodic fevers, especially
since up until now in my life, I had had a fever only about four times.
I do not deal well with fevers, because of no experience, and they feel
LOUSY. I've delayed several days getting this bulletin out, hoping to be
able to report a positive change. Hospitalized on 11/11. I'm home
since Friday evening, 11/19, 6:30.   I was very assertive all day Friday
to get my release from prison, and both my doctors (oncologist and
infectious disease [stand-in for my regular, out of town]) said "NO.
Stay the weekend." I pleaded:   Tell me what you can do for me here
that I can't do at home, and I know at home I can eat (I had spent the
past two days unable to eat the hospital swill, primarily because I was
in the 'metallic taste' + angry mouth sores phase of my recovery), sleep
better, and psychologically improve. An intern, female, who had spent 3
months in the hospital earlier this year (aplastic anemia, similar
immune suppression to mine) and was covering my treatment, contacted my
oncologist, and apparently made an impassioned plea on my behalf. I
came home.

The problem: On Wednesday, 11/10, at outpatient, I had two units of
packed red cells. I got home about 40 minutes after the 2nd unit got in
(about 2:00 pm), and immediately had a fever shoot up to 103.4. I
suspected transfusion reaction, started ice packs, Tylenol, and the
fever went down to normal by about 6:00 p.m.   I had a restless night,
with fever vacillating, and at 7:30 am, I called my oncologist with a
fever back up to 102.4. He had me go to outpatient for blood cultures,
with plan for admission direct from outpatient. For any infection to
become "overwhelming" is the death knell for leukemia patients, so I
complied, still believing it had been a transfusion reaction because of
the timing of the fever, and the fact I was on broad spectrum
prophylactic oral antibiotics.

I was in the hospital. The cultures turned positive on the 2nd day. It
had been a Pseudomonas infection (my own gut bacteria); they covered me
with IV antibiotics, broad spectrum, plus oral antifungal. In the
hospital, the Pseudomonas went away, but the fevers never did. I would
range from 99.8 to 101.8; further blood cultures were done, all
NEGATIVE. They did chest x-ray, CT Scan of the sinuses and of the brain
and soft tissues of the head (looking for signs of an opportunistic
infection, probably by Aspergillus [fungus], since that was the only
fungus that had previously NOT been covered by my prophylaxis). All
negative. There was no apparent explanation for my continued fevers.
My Catch-22 became "You can go home as soon as your fevers are gone for
24 hours," while they bombarded me with medications and blood products
all of which can and often do cause fever. I was sinking into despair
and depression. My own oncologist had said that, in his opinion, I
should stay in the hospital until my white cells returned. I'm glad he
can be approached and wheedled, because it's now two more weeks since I
wheedled my way out of the hospital and my white blood cells still
haven't shown signs of recovery. My fevers have continued, erratically,
sporadically. I self-administer IV antibiotics on a regularly scheduled
basis through my Hickman catheter. AND, I sleep better, eat better, and
clearly am doing psychologically better.

I currently rest at home, sleep a lot, concentrate on healing; visit
Outpatient Oncology three times weekly for tests and transfusions; and
see my Infectious Disease doctor once or twice a week for monitoring of
IV antibiotics (they furnish the meds and monitor my response) The
slight ray of hope in this prolonged setback is that: (1) the fever
pattern has now changed to longer periods of normal, and much fewer
spikes to higher ranges; (2) I feel more rested and human, and actually
feel like I'm turning a corner; and (3) On Wednesday 12/1, there was a
minimal increase in my white blood count (100 to 200), and an increase
in "absolute neutrophils"--this MIGHT be the beginning of recovery of
white cells. I have an appointment tomorrow, Friday 12/3 to get tested
on white cell recovery.    PRAY FOR WHITE CELLS. I'll keep you posted.

Aloha, Jack

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I got home from my latest hospitalization yesterday afternoon, totally
pooped out. I had had no effective sleep for three nights, and all
sorts of weird things had been happening in that specific hospital
room. It was an uncomfortable (physically and psychologically) room
with very bad vibes.. In my own bed at home, with all my "necessities"
nearby (water, thermometer, Tylenol, etc.), I slept an excellent 12
(TWELVE) hours last night. Although I felt much better this a.m., I
still have a way to go to feel close to myself. I think I can sleep
another 12 hours this evening without much problem.

Ken Sumida, my oncologist, is quite concerned for me, and said before
discharge: "Frankly, I have to be very blunt--I don't like the way
things are going (in the blood and marrow). If I were you, I would
consider pushing to go to Boston NOW, and if there is a match, you'll be
there for the stem cell protocol. If no match, you are eligible for
another, entirely different, protocol opening up within a few weeks."
This is kind of a "Don't die on my shift" type message. And I know he
is genuinely concerned.

On the other hand, the infectious disease doctor talked with me by phone
after I got home yesterday, and said in his opinion I was doing very
well concerning infection; i.e., he could find no evidence of a
significant infection going on anywhere currently. He has me on optimal
preventive medications, covering bacteria and fungi.

My interpretation: Sumida thinks I am teetering on the edge of a truly
"overwhelming infection" and will have a sudden demise here in Honolulu
unless I can hasten some specific intervention, such as one of the two
protocols at Dana-Farber.

I agreed with Sumida to e-mail Dr. Stone for details on the other
protocol; Sumida remembers talking about it with Dr. Stone, but can't
remember specific details. He feels it will be quicker for me to
inquire. I will so do right away.

My hospitalization this week was for sudden chills and fever (103.7)
Monday early evening, considered the nemesis of a leukemia patient, and
requiring immediate attention. From that point, everything that could
go wrong, went wrong concerning getting that attention. Finally, after
a horror story Queen's Hospital should be thoroughly ashamed of, I get
onto the ward and started receiving my antibiotic 15 minutes after
midnight. FORTUNATELY, the blood cultures (drawn before any medications
administered) remained negative for 72 hours, so the chills had not
represented a significant bacteremia. I had horrendous headaches,
sporadic, with no apparent explanation. All tests, including CT Scan of
the head and sinuses, chest x-ray, etc. were totally normal. The
infectious disease doctor picked up on a visible gingivitis in my left
maxillary area, in one of the locations I had had such horrible mouths
sores and destruction from chemotherapy. With some thinking it through,
I found out that when the headache roared, the teeth were sore to
touch. We now believe the gingivitis is the source of the headaches.
He has tried to cover mouth flora by juggling antibiotics, and it's
somewhat better, and the headaches are somewhat less often. But the
fact I have no functioning white blood cells to eat up the bacteria
leaves all of the healing to the steady flow of antibiotic through the
gums. A slow process.

I will keep y'all posted.

Aloha, Jack

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BULLETIN No. 18 -- Not Good News, but Finally Some Clear
Information
Date: Mon, 10 Jan 2000 19:44:30 -1000
From: "John E. Hall" <jeh@lava.net>

After all the roller coaster rides with high points and bottoming out, I
got the news this morning which finally answered all the questions
concerning where I stand, and my prognosis. The results of Friday's
bone marrow biopsy gave my doctor the information he needed. My
prognosis is "very poor."

The bone marrow biopsy clearly showed smoldering leukemia. I never
achieved remission with that high dose stuff in October [the stuff that
knocked me on my a**], only suppression which has lasted until January,
but is weakening. It is 100% certain the leukemia will spring forth at
any moment, leaving me with few choices. They are:
(1) Accept no further treatment, and survive a few months
(2) Accept chemotherapy here with a chemical "sometimes shown to be
helpful when conventional chemotherapy fails."
(3) Enter a mainland experimental protocol ASAP, if he can get me in.

I searched the internet through National Cancer Institute and found
some protocols, some of which I immediately discarded, such as the one
giving you arsenic trioxide (enough poisons, thanks, with the ones known
to help cancer; forget the ones known to cause death). Of the couple
dozen possibles, two of the most likely looking are in Baltimore at
Johns Hopkins and in Boston, a study being conducted concurrently at
three centers (Dana-Farber Cancer Institute; Mass. General Hospital;
Brigham & Women's Hosp.). All except one are NCI approved, sponsored,
or funded. One is in Philadelphia, and one at Cornell (?at their
hospital in NYC?).

I'm devastated, and struggling to keep grounded. I'm OK 90% of the
time. My local network is being very helpful. I'll keep you posted.

Aloha,
Jack

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Latest on Jack Hall
Date: Sat, 1 Apr 2000 10:49:07 -1000
From: "John E. Hall" <jeh@lava.net>
Dear friends:
     I'm writing this brief note to you all, because it's been a while
since Jack was able to write to you. I have sad news to report, I'm
afraid -- Jack has entered a home hospice program. It is what he wanted
to do. As far as treatments go, he heard from Dr Stock from Chicago (or
his local oncologist did, anyway) and I was given to understand from
Jack that she had nothing new to offer him. He is at home, and will be
receiving palliative treatments as needed.
     His spirits are -- well, it's kinda of hard to say -- he's not
talking much, has very slurred speech, and sleeps a lot. He's not eating
much, either. I feel that he senses that his end is near. Greg and
Katherine arrived here Friday night, and Jeff is here also. Jill, Jason
and Chris live here, so they are here also.
     I want to thank everyone for all their prayers and support for Jack
(and me) through what has been a horrific experience for all concerned.

                                         Thank you all so very, very much,
                                               paul beck

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Dear Family and Friends of Jack:

     I am writing this e-mail to inform you all that John passed away
yesterday afternoon (4/4/2000) at about 2:30 in the afternoon. Members
of his family and I were at the bedside, and the passing was so very
peaceful. There was no pain that we were aware of, and he just slipped
quietly away in his own bed -- his especial wish was to die at home in
bed surrounded with his loved ones. Earlier in the day, I had played
some of his favorite music - a Mahler symphony (# 5), and the glass
harmonica music which was more-or-less responsible for our meeting in
the first place, and the John Field nocturnes. The latter were playing
at the end.

     Thank you all for all of the wonderful support, thoughts, prayers
and loving concern you have expressed throughout this year -- without
them, this experience would have been unbearable. John was truly blessed
to have such friends.

     There will be a seaside ceremony here in Kailua, followed by
dispersion of ashes at sea. I'm not sure of the date yet, but feel sure
it will be before the 15th of April, as his nephew Jeff is going to have
to leave for Australia by then, and his son Greg is here for a visit --
he was planning to leave on the 8th, but now plans to extend a bit, I
believe.

     I feel very fortunate to have spent the last 14 years with John --
his wisdom, humor and zest for living have impacted my life forever. I
know that each and every one of you have a story (or more!) to share
about John -- please post them on the family web page, as that way they
can enter the family archives. Or send them to me, either by mail or
e-mail (my e-mail address is paulb@hawaii.edu) -- and I can post them
for you there. And if you know of anyone that knew John that's not on
this e-mail list, feel free in sharing the news with them. There are so
many people his life touched, I know I can't let everyone know --
indeed, I would hardly know where to start...

     Again -- thank you all so very much. John will live in the hearts
and minds of all who knew him -- a legacy of love.

Aloha nui loa,

Paul Beck

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