HewRon@aol.com wrote:
>
> 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
>
Dearest Ron,
we are so thankful that you are on the road to recovery. YOu are an
inspiration to all and your story is as informative as it is
compassionate, thank you.
May I suggest, from experience about neupogen. My Barb had to take
neupogen as well as epoitin (for red cells) after many treatments of
chemotherapy and that was originally on a regimen of ten shots, one for
each day subsequent to chemo. The suggestion is that you recieve a cbc
(complete blood count) test, which I am sure they are doing, after the
fourth day of neupogen. If count is going up or is stable, then to
continue with neuopogen. Then especially take another cbc on the 7th or
8th day, if the count is going up suffiently to stop the neuopogen after
the 8th or 9th day as you are in a sense overdosing from neuopogen and
that is why you are getting the bone aches. For many 8 or 9 days of
neupogen is suffiecient as was the case with my Barb. That way you are
minimizing side effects, thus eliminating that effect so that you can
truly know how you are feeling after the 10th day without being
concerned with side effects from the treatment for the treatment for the
disease. Wow, its confusing but you know what I am saying. Just a
suggestion Ron.
Take care and God Bless YOu
marty auslander
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