It’s always about baseball in Grandma’s eyes.

This has been a pretty remarkable week.  So much has happened.  I received a phone call from a pharmaceutical company somewhere in Kansas telling me that I had been approved for their “Commitment to Care” program.  What that means in a nutshell is that they have agreed to cover my prescription costs for 12 months.  That’s no small gesture!  The interferon shots that I started yesterday will run approximately $85,000.  This is truly an answer to prayer and nothing short of a miracle.  I also found out that I was approved for Medicaid, so that should help with the costs of the surgeries.

I have to comment on the election last week.  Not a political comment, but a funny anecdote.  My first response when the election was called was that I wanted to speak with my Grandmother to see what her perspective was.  I asked her if she ever thought she would she would ever see a black President.  She responded by telling me that she never knew it was something she could think about.  I thought that was a wonderfully insightful response.  Then she continued by asking me, “Did you see Reggie Jackson in the audience.  He was crying.” 

“Um, Grandma….. I think that was Jesse Jackson”.

“Oh… well Opal was crying, too”.

“Yeah, um, Grandma…. her name is Oprah“.

YESTERDAY

I started the next phase of treatment yesterday.  It was kicked off by having some bloodwork done.  Evidently, even though most of my bloodwork came back fine last week, for some reason my bilirubin counts continued to climb slightly, so they needed to recheck that.  The injection was a piece of cake: a little swab, a little pinch, and a little stick.  All done. 

The effects came on much quicker than I had anticipated.  I had actually sat down to update the journal when around 630pm I started shaking.  No little quivers, no tiny chills…. just went right into the shakes.  I laid on the recliner for about half an hour trying just to control my breathing to see if I could calm things down.  No luck.  I had just done laundry so I grabbed my sheets and went to put them on the bed.  I got two pillowcases done and realized that it wasn’t happening.  I grabbed on of my little blue bags just in case and fell into bed.  After another 20 minutes or so, I was still shaking and knew I needed something.  Getting out of bed was not an option, I knew this.   I started to get a little scared because I was by myself for the first time.  During all of my other treatments someone had been with me 24 hours a day.  I called a friend from school and asked her to come over for a while, she agreed without hesitation. 

I’m really not sure what time it was when things settled down.  Sandy was still here when what little fever I had broke, it must have been around 930pm or 10pm, I’m guessing.  I woke up once more around 1am and then slept through the night until 930 this morning. 

The reaction last night was similar to when I first started treatment at the end of September.  The only difference I remember was last time there was more fever and less shakes.  I’m hoping it all subsides after the first few treatments.

Hospital Hi-jinx

Driving to the hospital on the morning of the surgeries, I was excited to get a wonderful treat (aside from Mom GPSing her way all the way to the hospital on the ONE street we had to drive to get there).  My cell phone rang and on the display was an area code I’d never seen before.  I answered the phone and received the most awesome suprise… the call was coming from PFC Andrew Ostgaard.  In my mind Andrew is a three year old running around with a book in each hand.  In reality, he’s now a Marine recently stationed in Iraq.  VERY recently.  Like two weeks or so recently. 

“I’m glad I caught you before you went in to surgery.”  I was speechless and in tears.

Ok.  Wow.  Just plain wow.  24 hours later I received another call.  “Just wanted to check and see how you were doing.”  I was totally blown away.  Thanks, Andy….  those calls meant the world to me.

Just a little change of plans for this week.  Dr. Flux Capacitor is off until Thursday.  He’s the radiologist who will be performing the CT Liver biopsy and if necessary the Radio Frequency Ablation.  My understanding is that the RFA uses microwaves to kill off any undesirable tissue.  Microwaves, huh?  I’m definitely bringing some popcorn.

PFC ANDREW HAROLD OSTGAARD

I’m definitely concerned…

These were the words from a doctor I met yesterday.  This doctor would begin to tell me that the lump on my head that I have come to know and love as a friendly neighborhood cyst, in fact, probably wasn’t. 

I’ve told people over and over again that I have a firm policy against worrying unless I have a specific reason to worry.  It drives me nuts when people freak out as their doctor gives them a list of all the possibilities.  My perspective has always been that unless the doctor tells me that something is absolutely wrong then the possibility exists that it’s really nothing bad.  Assuming either way isn’t helpful.

So the doctor spent what seemed like 30 minutes pulling and cutting and tugging inside my head yesterday.  Luckily, I didnt’ feel a thing.  They did an excellent job of numbing me up.  They (by ‘they’ I mean the doctor and the nurse) seemed to be having some difficulty stopping the bleeding.  After about 6 or 7 minutes of searching for where the blood was coming from and several zaps of the cauterizing instrument, the bleeding was controlled with some extra stitches and he was ready to close.  Eight more stitches on top of the scalp and I was able to sit up for the first time in about 90 minutes. 

I glanced over to the tray the doc had been working from and saw what looked like part of one of my old Lincoln Log toys.  “Is that it?”, I thought.  It was twice the size of the lump I felt on my head.  I would soon come to find out that he hadn’t even removed half of what he saw.  I asked about this and he explained that he didn’t feel comfortable removing any more of it in an office setting.  Anything more would require surgery.  Like in an operating room. 

The doc went on to explain it would take 7-10 days to get the results from the lab and added that he liked the lab here in town as they were very quick and thorough.  In the meantime keep the wound dry and come back next week to get the stitches out. 

The nurse dressed the incision and I set up the follow-up appointment. 

My phone rang a few minutes ago.  It was the nurse.  The doctor has my results and wants me back in his office at 4pm today.  When I hesistated she said they could possibly wait until first thing tomorrow morning but the doc needs to see me as soon as possible ”to discuss the options”.  This is never good news.  So much for having 7 – 10 days.