Got AML?

Better late than never, or the early edition?

Whatever you prefer, another "sunday" update is due, I know its Saturday,
dont worry. I was in the spirit of writing something, first time in a few
days, so better GIT to it.

We left off after my third round of Chemo, at that point I was in full
remission ie. cancer free. The chance of a fall back was as I mentioned in
a post or two ago 50/50. The docs at St. Olav had allready been clear that
I was in a group that would benefit from a bonemarrow transplant, but this
was for me to decide. Like I would know the first thing about it?!
I had allready read up alot on AML, and felt I had a understanding of it,
but bonemarrow transplant, that didnt sound good, the more I read, the
scarier it became. So many things could go wrong during the post-op
periode, I felt ill just thinking of it. But I eventually had to make a
choice, so after playing devils advocate with the docs at St. Olav, I felt
I atleast should fly down to Bergen and meet & talk to the persons who
would perform the magic. Cause this is all magic to me, to this day I
still cant believe how it works.

For me the scale tipped in its favour after reading a recent study on
JAMA(The Journal of the American Medical Association), where AML
patients in my sub-group benefited greatly from a transplant when they
were in first remission. Another very good point made by Dr Sjo was that
they might not be able to get me in remission if the cancer returned.

But lets jump back a bit, my bro & I left for Bergen and where supposed
to have a 2 day show & tell, where hopefully most Q's would be answered.
I was warned by the nurses & docs at St Olav that this could be a hefty
trip, they were known to talk straight & leave no gory details out.
I didnt quiet get why this was a bad thing, its just how I want it ffs!

We had planned this to be a last bro's before hoe's tour, and had set
our minds at hitting the bars that evening/night. But we should have
known that wouldnt happen. During the blood works on day 1 my bro
started to feel sick, pale, had to lay down. And eventually ended up
getting married to the porcelain god the same evening. I couldnt be
close to him, so I walked aimlessly around and tried to kill time as
best I could. Next day his shape had not improved, so I flew solo
during those sessions as well. A bit shame really, cause alot of the
info were aimed at the donor. We had to post-pone departure with a
day due to him being sick. But we both agreed it had been a great
bro's tour, you might say we set the bar low, and you might be right.

I could still pull out, but not to loose a "slot" in the queue, I
decided to initiate the process while we were there.

After we came home I ones again started the mental prep, this is no
doubt the hardest part Ive found. I can take physical beating, to the
point where its just ridiculous, but loose your top-floor, and all is
lost. Going through any serious illness where death is breathing down
your neck, your mind is what win or loose the battle in my opinion.
My approach is to disconnect, and tap in every so often, I know it
might sound odd. But you cannot be "in it" 24/7, you will go stark
mad if you do. I pictured the post-op period to be 3x as bad as the
first high dosage chemo. I dont think *anything* can be much worse
than that, ok, water boarding & a week of hefty torture perhaps..

I ate alot too, whenever I had a craving I tried to satisfy it, I
knew I would loose weight, but had no idea how much. So those that
visited me at home during that time would see me chew on something
most of the time.

I think we are almost caught up to todays events, no? If you feel
something is missing, feel free to throw questions my way. Either
here, via µblog or email: aml (AT) ohhh (DOT) no

Oh, right, the pictures? Nothing big really, just my first walk
outside since isolation. Muhahahaha, oh yeah, it felt as great as
it looks.

   

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