Unfortunately I am still tubed.
I had my bone marrow
Biopsy last week - and the initial results are fine - no sign of the leukaemia
returning - which is as expected, but still nice to
hear.
They want to do closer examination of the
sample and check my
"degree of chimerism".... In non-med-speak that
means they look at the DNA in a selection of the white
cells to see if it is all from my donor - or whether any of them still have my
original DNA.
If
there is a mix it would be bad news - it would mean there are still some of my
old marrow stem cells functioning - meaning there's still potential for them to
go wrong and bring back the leukaemia. It seems there is only one
technician who can do those tests, she's recently back from wedding leave, with
a backlog - so it will be 2-3 weeks at least before we get those
results... Again - I will practice
waiting.
As a side note -
in
medicine a Chimera
is "a person composed of two genetically distinct types of cells". In
Greek mythology it's "a
fire-breathing she-monster with a lion's head and a goat's body and a
serpent's tail". Sounds a lot more interesting, but getting blood transfusions
would be a bitch.
And the Hickman line? It seems they
agreed to remove it because I've been bugging the doctor about it.
But talking to the nurses (who are the ones at the front lines) it turns
out they would all be much happier if I kept it in.
For transplantees
with unrelated donors the line
usually stays in usually in for at least a year post
transplant. I could have it removed
and then re-inserted if needed at some later point - but that would be my 3rd one - and each scar on the vein weakens the the wall a bit more. They could put one in on the left side but that is
harder due to the different
arrangement of veins and arteries
etc.
Also my neutrophil counts were lower again yesterday. The levels fluctuate Normal range is 4 - 6ish and
they dont like to cut you open at all
if you're below 2.. Mine were at 2 and rising when the doctor agreed I could have the tube out, but the last two
counts were 1.5 and 1.3. They want to delay definitely till I'm back and
stable over 2, and "discuss it again then"'. They want me to just let it go until they're ready to
take it out on their own schedule, and I know that's the sensible thing to
do.
It's a bit of a downer, though Kira is more upset than I am - we'd been looking forward to going swimming
again But it's also a
reminder that just because things have been going really smoothly so far I dont have any assurance
that they will continue to do so - and I do still need to be
careful.
"first
thing you learn is that you always gotta wait"
