Friday, March 15, 2013

Roller Coaster


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!