This Is Spinal Tap

How many times can one lose all sense of time before one loses ALL sense of time?  


It's been four long days since my last post and I've received several anxious emails from friends and family wondering if everything was alright.  It's touching to know that what I write for personal catharsis has had an impact on folks.  How difficult it must be to have to assume that "no news is good news",to wait for the next installment to appear, not knowing when that will be or what news it will contain.   Well, the news is finally good but the hills and valleys we've traversed have precluded me from writing a blessed word until now.


The point of this hospitalization was to sort out the incapacitating headache Phil was enduring.  For you fellow migraineurs out there, I'm told what he was going through pales in comparison to our troubles.  And I have suffered through some seriously bad 3 day juju, let me tell you what.  This deal Phil had needed time to declare itself clearly and was finally given a name -- "spinal headache" or post dural puncture headache (PDPH).  Although it is rare for a headache to occur so many days after the spinal tap (5 days) there is nothing like a spinal headache - it feels like the worst headache you've ever had complete with nausea and vomiting when you are sitting up and it quickly resolves when you lie down.  


WARNING:  we're gonna get a little graphic here.  During a lumbar puncture (aka: spinal tap, intrathecal chemo) a large spinal needle is inserted between two vertebrae and pushed in until there is a "give" that indicates the needle is past the dura mater, the outermost and toughest layer covering the spinal cord. The needle is again pushed until there is a second 'give' that indicates the needle is now past the arachnoid mater, the delicate fibrous middle membrane covering the spinal cord.  The stylet from the spinal needle is then withdrawn and drops of cerebrospinal fluid (CSF) are collected from within this subarachnoid space.  Phil then has to lie on his back for six hours to prevent the "spinal headache" and any leakage of CSF.  


In a normal situation this would go smoothly and all would be well.  For Phil, the first several days did go well and he felt good which we marveled at considering the cocktail of chemotherapy he was taking.  While he was preparing to leave the hospital from his first round of chemo he was just starting to feel a mild head and neck ache settle in but by the time he'd been gone for 30 minutes it hit him like a ton of bricks.  Although it would take several days to ferret it out, Phil was leaking CSF and having classic symptoms of spinal headache.  But the challenge with a patient on chemo is determining what to attribute these symptoms to.  Dehydration?  Side effects?  Fatigue?  All of the above?  Phil said it well about the ER docs.  They have an unknown patient land in their lap in major distress and they have to deal with it.  Like trying to find their way through a maze -- all comers.  Respect those Doctors.


Thankfully, after lots of rest, fluids, pain and anti-nausea meds and good old common sense it became clear what was going on.  With spinal headache, the treatment is straight-forward.  With what's called an epidural blood patch a small amount of Phil's blood was injected into the epidural space near the site of the original puncture and the resulting blood clot then "patches" the leak.  It is amazing how quickly my man went from a babbling zombie to a happy humorous virtually pain free man in the span of about 2-3 hours.  In another day or 2 he progressed back onto a solid diet and was able to come home last night.


When we drove up to the big house we heard the sound of laughing and kids playing in the pool.  Thinking he'd want to lie down, I headed for the bedroom but he was happy just to sit in the night air and watch them cavorting around.  But, of course.  What must it be like to have the rug pulled out from under you?  First with the diagnosis, again with the chemo and then again with the side effects and spinal headache.    Phil missed out on the kids first day of school, suffered a major set back in his recovery, came home neutropenic (very low white cell count) and immunocompromised and has a hematocrit of about 30 which translates into profound fatigue.  


I've noticed some definite changes in Phil.   He has a chronic little cough from the meds and he naps 4-5 times a day.  His appetite has gone down and he's losing some weight.  He's not as fit as he used to be and just being on his feet for long periods of time make him tired.  This is Phil we're talking about -- it's crazy but true.  But I've noticed some other things as well.  He's never once thrown a pity party.  He's never said "why me?", never renounced God and never considered quitting the chemo.  He's definitely not lost his sense of humor either.


He's home now where he belongs and he's ready for more.  There's plenty of fight left in the ol' boy yet.