Yesterday we met with Dr. J. We discussed the various
symptoms and side effects I’m having,
as the list progressively gets
longer. Most of these, while troublesome, are considered to be in the range of ‘normal’
chemo reactions while on my particular chemotherapy regimen. He gave me a couple
of prescriptions to better manage those, which should hopefully make cycle 4
next week easier.
For me it has been difficult to handle some of the physical
effects, but even more frustrating to deal with ‘chemo brain’ as they call it.
It isn’t just a matter of my short term memory shorting out; I find that I am
losing words. When referring to
something on the street I couldn’t
remember ‘road’ so substituted it for the closest thing that came to mind,
which was ‘floor’. Language has been my love since as long as I can
remember. I’m a writer… where would I be
without words, without the ability to express myself exactly as I need to? This
part wears me down, and I’m told even after chemo ends it may be months before
my brain recovers.
The one thing that really troubled him though ( and us!)
have been the sudden drops in blood pressure and the passing out /near passing
out. He let us know that he has never heard of it happening because of chemo,
and like the ER doctor ( he had all his notes and lab tests, yay) he thought it
is likely a form of vasovagal syncope.
Likely, in his opinion, a combination of the really extensive surgery (
definitely called MOAS for a reason!) and the battering from the chemo.
There are some things that have to be ruled out that could
point to more serious complications. He didn’t elaborate on those, but he did
schedule a series of tests for me. The first is tomorrow (… okay, today, since
it is now 3:33 am), designed to test my adrenal system to see if there are
issues there. He is also scheduling a few heart tests, some next week and some
whenever they can fit me in. In his
opinion its very, very unlikely… but then I seem to be the queen of unlikely
things, so we need to rule things out.
As for the chemo regimen, we continue with the same drugs
and dosage, as he feels the side effects don’t warrant a change. He will be starting me on some type of
steroids after the tests come back though, to help with some of the issues. He also agreed that 12 cycles was extremely
ambitious, given the extensive MOAS it was any wonder they could give me any
chemo at all. We agreed that given that there is no research on whether chemo
does anything for my type of cancer 6 cycles was a reasonable goal.
I can do that. As hard as 3 have been, if we get to the
bottom of the passing out I can do another three. That’s only another month and
a half. I would be done before Aiden’s birthday! I can do that, I can do that, like the little
engine that could!
That being said, we wait on tests and monitor. Next cycle is
# 4 for me, which had been Dr. T’s initial suggestion in Calgary ( though he
defers to the expert here, Dr. J). From here on we mostly play it by ear cycle
by cycle, with the goal to try and make it to the 6th. At the end of the day there has to be a cost
benefit analysis to the whole thing --
am I benefiting from it, or is it just making my body weak all over
again?
Fact is there simply is no research on it, and as Dr. J said
none that he’s aware of to be made in the foreseeable future. There’s just too
few of us affected, not enough research funds.
Anyhow, he’s also started the process of requesting the MRI
I’m to have in December, to see how this whole year panned out.
I’m tired, and cranky, and not looking to be up in three
hours so they can poke me some more… but if its for another month and a half
only, bring it on!
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