Right off I want to thank those who have expressed concern because I have
been away longer than expected. I'm the one with acute erythroleukemia
(that's what the doctor told me to put on the insurance claim forms). On
November 6 I was admitted to hospital for my second "consolidation" period,
which lasted five days. On my second day a bacterium was found in my blood,
resulting in two weeks of two different antibiotics administered through my
broviac tubes. (A broviac allows you to get chemo and other stuff without
injections; the stuff flows directly into you via these tubes that enter
through your chest. Sounds ghastly, but the reduction in injections -- save
subcutaneous ones, and blood tests away from the hospital -- is a blessing.)
I missed my daily visits to MOL. If computers were available to patients,
that would certainly be welcomed by yours truly. I really appreciate the
kindness expressed here on MOL, and wish I were an expert who could offer
advice in response to the calls for help you see here. Of course sometimes
people will take advantage of a group like this to push their products, but
one can usually detect the commercialism and just zap those notes, though it
may well be that some of these offerings have merit. We who are climbing the
mountain have to detect the wheat from the chaff. We have to do this even
when dealing with professional medical folk. For instance, in my hospital
stays I have declined certain procedures on several occasions -- mainly
because I thought they didn't accord with my doctor's wishes. It is not wrong
to doubt even highly qualified medicine men and women. We are dealing with
the very lives of ourselves and our loved ones. It is a fundamental right to
doubt and question. (Buddha said "Believe nothing, including what I say, if
it doesn't make sense to you.")
I have arrived home totally exhausted. And since "consolidations" must be
regular, I am due back in hospital for my third one within the next two
weeks. When I asked my doctor if we could leave the next consolidation until
after Christmas he said that would be "silly", since I am doing well. My
white-cell count before leaving hospital was 9,800 -- it had been 90 just a
couple of days earlier. Thus the magic of neupogen. By the way in a previous
note I mentioned aches and pains. When I mentioned these to a nurse, she
pointed out that the vigorous action of neupogen takes place inside the
bones, and that's what causes the discomfort (which is not extreme). A
hospital doctor said the pain was an indication that the medication was
working.
And here we go again. On my re-entry into hospital the chemo will knock my
count right back down to near zero, en route knocking out villains still
lurking in my immune system. Then back home after five days for 10 days of
self-injection with neupogen. And then, God and my body allowing, higher
counts, followed by a couple of weeks at home and then my last period of
consolidation. And then? Hair would be nice! I have now lost even that hair
that is one of the markers of adulthood. In the mirror, now that I have no
head hair whatever and just a smattering of super-white pale beard hair, and
almost none under my arms and points south, I look like a cross between a
prepubescent boy and an old man. I'm not complaining. I am in the best of
hands, I think.
I hope this is true of you, fellow traveller. But do not feel shy about
challenging anything your oncologist or anybody else says. The doctor
probably knows a great deal more than you, but doesn't know everything, and
ought to welcome knowing how you really feel. You may come to love your
doctor (I think I am headed in that direction). It is important to have faith
in your physician. I have faith in mine, but I am ready to question anything.
Of course, if you ask hard questions, you must expect some hard answers. I
have received a few. But the bottom line is, his magic seems to be working.
And here it must be said that I am supplementing his magic with Chinese
herbs, vitamins and soy milk.
Meantime it is good -- no, gorgeous -- to be back in my humble home. On being
brought home by my friend yesterday I astonished myself by bursting into
tears after unlocking the front door and being surrounded by total
familiarity.
That's enough self-revelation for now.
Before I went back into the white house, we went to a favorite Chinese
restaurant. My fortune cookie said "Nature, time and patience are the great
physicians."
God bless.
-- Ron
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