Head like a hole

I'm back already to share some good news as a result of some tests last week that gave me the heebie jeebies so much that I didn't really want to share them with anyone until I knew what they actually meant.

So let me back up a little bit...last Tuesday, while listening to U2's greatest hits on all-plastic headphones, I had a brain MRI just to establish baseline conditions of my Ommaya port and all that.  Then on Friday, I get a call scheduling a last-minute appointment with a neuro-oncologist at 4:30 p.m to review my MRI results.  The neuro sits me down and shows me on the MRI how the neurosurgeons that installed my Ommaya first put the catheter one way through my brain, then another way, leaving a small hole IN MY BRAIN in the first location "that doesn't mean much of anything for you, it's just interesting," according to the neuronc.  But it kind of meant a lot to me, what with how long it took me to remember the name of the show "Twin Peaks" the other day, until he said: "But what I'm really concerned about is this."  And he showed me this little bright round spot, at the base of my pituitary stalk, which is right below the pituitary gland.  Then I found something else to worry about.

"Well, what is it?"  we asked.  "Well, I don't know," said the doc.  "Is it more leukemia (it sometime organizes itself into masses called chloromas)?" we asked.  "Well, that would be unlikely given your treatment," said the doc.  "Then what does it mean?" "Gee, I don't know."  Seriously, this is how the conversation went.  He never even ventured a guess, just kept looking from the bright spot to me with bewilderment.  Finally he clapped his hands to his knees and said, "Well, I wouldn't put all my money on a bet against cancer.  I'm going to need a more detailed look at this."  So he scheduled me for another MRI next (this) week.  "Have a good weekend!"  he said.  I could imagine how carefree and awesome my weekend would be, with this fantastic uncertainty sitting at the back of my twice-punctured mind.  But I decided to save the hysterics for after he had his closer look and could give me a reasonably doctor-like diagnosis, and I did have a great weekend actually.

After the second MRI (Amy Winehouse on the headphones this time), I met with my team on Tuesday (my PA, attending MD, and RN) and they hadn't heard anything from neuro yet.  Apparently, he was going to have a conference with his department on Wednesday to decide what it was.  But from my team's perspective, if the lesion was anything but benign, I would have to do like 5 days of cranial radiation in addition to body irradiation.  Bleh.  That was on top of the news that I am a leper and a typhoid Mary.

But as they sometimes do, things turned around some today, and in my follow-up appointment with the neuro-oncologist he came in and said, "Good news!  It's a perfectly normal variant."  Translation: it's just how I'm built, with a little thing on my pituitary stalk.  I've heard the word "normal" so rarely in the course of this disease I almost fell off my chair.  He continued, "also, I would not recommend cranial radiation for this or for your CNS (central nervous system) disease (remember, I once had leukemia in my cerebral spinal fluid, hence the Ommaya port).  Just one more injection of chemo instead."  I never thought I'd live a life in which that was the best news I'd heard in a week, but it was.

So I got on the horn to the RN on my team to see what else was new.  She had heard the good news, and also informed me that all my counts are up, and my neutrophil count is up to 1650.  Finally!  Not normal range yet, but getting a lot further from neutropenia.  She ALSO told me that my virus test came back negative, so I am no longer a total isolation patient, and I can ride the Hutch shuttles again (did I mention I had also been banned from the shuttles?  The humiliation!) which is good since I have appointments at University of Washington Med Center today.

So that's what I've been sitting on for the past while, which is also probably why I didn't blog.  Either that, or I'm lazy as ever.  Yes, I guess mostly the second one.

Happy Thursday,
jq