I Hate Cancer

Don't even know where to begin this one.  It's only been a day or so but I've lost all sense of time again.  Wasn't it just the other day I was practically bragging about how wonderfully everything was going?  Reveling in the blah-ness of it all?  Extolling the merits of being underwhelmed?  Well, let's just say that ship has sailed.


It started out simply enough in the mid afternoon two days ago.  A mild headache, nothing a few Tylenol couldn't take care of.  That is until a few Tylenol couldn't take care of it and Phil had to move on to the big guns.  By that evening we were making a call to the doctor because 10 mg of oxycodone weren't doing jack-squat and he was in excruciating pain whenever he moved his left eye.  Fortunately for us, and one of God's small mercies, Dr. Kossman was on call.


Before I continue, I have to say this.  It really can't be understated how awesome it is to reach your own doctor when you call the on-call service in a crisis.  There is no explaining to do, no background to give, no time wasted.  You just hit the ground running.  And who's voice do you most want to hear when you're in crisis but the one who's been holding your hand and shepherding you through?  So, when we reached Dr. Kossman I already felt better for Phil and whatever the hell was going on with him.  The Captain was at the helm.


Back to the drama that was unfolding in my bedroom (don't even go there).  After much discussion we decided to try other options for pain relief rather than spend the night in the ER and would check in with Dr. Kossman first thing in the morning.  Despite our best laid plans however, it was a long, pain-filled, sleepless night.  In the morning, because Phil had developed double vision in his left eye and numbness across the left portion of his scalp during the night, we were sent to an ophthalmologist.  By now Phil could barely open his left eye and it was bulging a bit.


After a very thorough eye exam, the working diagnosis was that he had an evolving cranial nerve palsy of the III and V cranial nerves.  The III nerve controls the movements of the eye muscles and the 1st branch of the V nerve controls the sensation across his scalp. Some inflammatory process in the brain was to blame for this.  But what?  Tumor?  Infection?  He needed an MRI STAT.  Sounds like a scene from ER -- but unfortunately it wasn't.  To say he looked like shit is to be flattering and I know he didn't feel much better.


Dr. Kossman, being the consummate physician he is, wanted to order the MRI himself and who am I to stop him?  The guy is freakin awesome.  On a crazy busy clinic day, he walked across the street and spent 30 minutes looking over Phil's MRI from one month ago with two neuro-radiologists before seeing us to discuss our next move.  He's just that kind of doctor.  Oh, and he worked us into his already unforgiving schedule.   When he took Phil's blood it showed the obvious -- profound anemia, next-to-no platelets, and only 200 WBCs.  That alone would make anyone feel like crap but combine it with a bulging eyeball, headache, postchemotherapy, and no sleep...you get the picture.  When given the option to go home after the MRI or go in the hospital for pain control and support, Phil cried "Uncle!" and he got a bed on 3 South faster than I've ever seen.


Things happened pretty fast from there on out.  He had lots of labs drawn including blood cultures.  He was given IV fluids and 2 units of RBCs and platelets.  He had his MRI.  A neurologist (Dr. Evans) consulted on his case.  An infectious disease specialist (Dr. Mayer) consulted on his case.  Dr. Kossman came and rounded on him at the end of his day ~ 8:30p.m.  More blood was drawn.  More platelets were hung.  Vancomycin (an antibiotic), Acyclovir (an antiviral), and Amphotericin (an antifungal) were all hung.  Pretty much the whole kitchen sink was going into the guy.  


And here's why:  According to the MRI the cranial nerve palsy is due to an inflammatory/infectious process going on in and around the L orbit and in the cavernous sinus deeper in the brain.  Shit, his brain is infected.  That's serious.  No wonder there was so much damn foot traffic through his room this evening. Those were my thoughts on the drive home from the hospital last night, when I could start wrapping my mind around what was going on.  It's amazing how long it takes things to sink in when you're in crisis mode.


Today as I write this we now know that his blood cultures are all growing bacteria, gram negative rods for you medical folks.  It is not uncommon for neutrapenic (immunosuppressed) people to grow gram negative rods in their blood cultures.   However, this suggests that Phil may have two separate processes going on.  Dr. Mayer believes that to be the case.  He thought out loud to me that his port could be the source of this blood infection and he will do everything he can to sterilize the blood with the antimicrobials to save the port.  Otherwise he'll need a new port down the line.


As for the infection in the brain, he doubted that was related to the bacteria in the blood but he won't know until the cultures and studies come back in several more days.  Phil did have a blood patch in late August with his first spinal tap which if done with infected blood could have been a source of contamination.  However, Dr. Mayer believes the timing is too far out.  So, we will watch and play the waiting game.  Meanwhile, Phil is very tired, weak and out of it.  Thankfully, he is also mostly out of pain.  


As for the rest of us, well, what can I say?  Our trains are ultimately hitched to Daddio's.  Over the last few days the kids have been spending a lot of time with their Aunt Terry and cousin Josh.  Thankfully and in further evidence that God is a genius, we have them nearby to love on the kids and provide distraction, comfort and a sense of routine.  For Bennett and Olivia, their stress has been showing up with bad dreams and emotional outbursts or for instance, last night Bennett having a "bad headache".   


I think it was at breakfast yesterday when I told Bennett I needed to call the doctor about something and out of nowhere he shouted "I hate cancer!"  I just looked at him and said "I do too honey, we all do."  There was nothing else to say to that.  He nailed it.

Thank You Team Conrad

Today I think I might finally be feeling the fatigue.  In my folly I saved writing this post until late and my brain is competing with the XBOX in the background for my attention to detail.  Truth be told, I also just polished off a big dish of frozen yogurt with chocolate chips and am primed for a food coma to set in.  Reader beware, just saying.   

Seriously,  any thoughts I had of skipping out of posting tonight were quickly extinguished when I saw how many new followers the blog has received since yesterday.  The outpouring of emails, comments and FB posts has been more than amazing and there really aren't words for how loved and supported we feel.  THAT is where my energy comes from tonight.  From you, Team Conrad.

Many of you have written how much the blog has helped you.  What started for me as a simple journal and a way to keep friends and family informed has become a source of tremendous energy and support for me as well.   I love to write knowing that it is giving you information, hope,and inspiration and I feel renewed and connected to our team when I am finished.  So, thanks for being there and for inspiring me.

As for todays news:  The initial spinal tap was read as...NEGATIVE! Praise Jesus. We will hear the final results tomorrow but we are very excited.  If the spinal tap is negative then Phil will only need the intrathecal chemo 3-4 more times and he will NOT need a reservoir (plug!) in his head.  Hallelujah!! Finally some good news after a landslide of crap-o-la!  Stay tuned for the final results.

Tomorrow brings the last 2 chemo agents for this cycle, vincristine and adriamycin.  They are unknowns to us and we will learn what side effects they have to offer over the next 24 hours.  We'll see how they work and hope for the best.  After that, he's coming home to rest at "the big house" (subject of a future post) on Saturday.

Take heart Team Conrad,  Phil's been kicking butt and taking names and is buoyed by your love love love.