Yesterday’s highs were wonderful, but the reality is that it
was a milestone and there is a long, arduous road ahead of me. I had an
appointment with neuro-ophthalmology in the afternoon to address something that
had developed early in February, but didn’t seem like a big deal. It was very
odd in that if I tilted my head to the left, everything was normal, but if I
tilted my head to the right, my vision split. This double vision was one of the
criteria that made my initial admission a medical emergency. There was valid concern that cancer had
spread to my brain. After an MRI that first night and a clear lumbar puncture
(spinal tap), I was cleared of that hell. What the ophthalmologist told me was
that the double vision was very likely the single presenting symptom for my
leukemia. It has something to do with the nerves controlling my eye movement
being affected by the marrow in my skull…I don’t understand the connection, but
someone with a very clean white coat who could look into my eyes and tell me I
have beautiful macula! And I mean, who sweet-talks like that anymore? And who
would have put double vision and leukemia together?
It became painfully clear even during that appointment
upstairs that I was dealing with fever in an embarrassing way. I was sweating profusely so when I got back
to the room, a shower was in order. It was also clear that blood cultures were
in order to find out what exactly was causing the fever. It apparently has to
be drawn when the fever spikes…and the unfortunate part here is that they can’t
pull it out of my PICC line. They had to
stick me. Over the next hour, they got
two of these cocktail bottles filled, but the remaining two they wanted out of
the other arm (don’t ask me why they had to do twice as many today) weren’t
coming. The fishing expedition with the
needle finally got to be too much and I asked for someone else to do it. I have a pretty high threshold of pain, but
this guy pushed right past it twice and I was in no-kidding pain. We ended up
getting the other two done, but not until some additional expeditionary needlework.
The rest of the night was the cycle between chills, kicking
the covers off, and sweating. Trying to find the comfortable place was not an
easy thing. And unfortunately, that roller coaster of fever is where I am
today. The docs that have come in don’t
know exactly what’s causing the fever, but I’m being infused with some pretty
powerful antibiotics. I even awoke from one of my 15-minute mico naps to see
two people I hadn’t met before. They
introduced themselves as from “Infectious Diseases.” No, leukemia is not
infectious, but apparently, they were concerned that my fever may have resulted
from either the blood transfusions or from MRSA (hospital born staph
nastiness). Like every other time, there was nothing they could hang their hat
on and nothing on my person they could sample and look at under a microscope. I
have very, very few white blood cells, so I generate no puss, I have no
lesions, no rashes, no other indications of infections, so they almost appeared
crestfallen when I wasn’t able to answer affirmatively to any of their
questions. I hate disappointing doctors, I do, but the last thing I need to add
to my list of ills is something infectious!
The one thing today that really had me bummin’ was that even
though I had a clean MRI, the docs are wanting to give me chemo directly into
my spinal cord. Did you cringe like I did when she delivered the news? Cringe
again, dear reader. I get to do this four consecutive weeks. On the one hand,
it should ensure there’s nothing going on in my brain, on the other…come on!
Cut a guy a break. Not a happy camper.
So, there are definitely ups and downs on this very windy
road and while my overall attitude hasn’t changed, today was a healthy dose of
reality.
Keep those positive vibes of all stripes inbound. “Combat Air Support” of any kind is
gratefully acknowledged and received.
Be well, stay strong, much love to you all!
