One Quarter Blind

Ok ...

Back to work.  The past week was awful, and every subsequent Temodar cycle is the getting worse and worse.  I don't think that I'm overstating things.  I mean, I know how I feel.    

I started thinking about Temodar, and how the first time I was introduced to it.

I remember the first time Dana and I met with Dr. Rudnick.  It was a Monday, December 3, 2007.  It was first full day of therapies (physical, occupational, speech), and towards the end of the day, we were watching some TV in between sessions.  Rudnick knocked on the door, and the first thought I had was: "Who the hell is this guy?"  Right after that, Julia, the speech therapist, was here for the second speech session (awesome alliteration), and I just assumed that he'd have to wait until the session was done.  At that point, he was just another face in the endless rabble we'd been subjected to in the previous four weeks.  

Guess again.  Rudnick politely asked Julia to give us some time, and then he talk to us about the two kinds of tumors, the enhancing and non-enhancing, and how we'd only been introduced to the former.  We got through the first phase of journey, but there were a lot more to come.  

If I remember correctly, non-enhancing tumors are the part that of the tumor that you cannot operate on, and instead, you radiate them and use chemotherapy to manage them.  Because GBM is so aggressive and so prone to re-growth, you have to manage this equally aggressively to have a chance.

The more he talked, the more I felt like that the original surgery was for naught, like it didn't matter.  I remember either Dana or I asked why you can't just out the non-enhancing tumor as well, and his response was that it would wreck me, physically and emotionally.  

I had no idea how to take that.  Literally.  After Rudnick left, the information started seep in, and I basically lost it.  Just started bawling.  I should clarify that perviously, the only thing that really teared me up was "Hoosiers."  That just wasn't my style.  From there on, though, I was crying about EVERYTHING.  I've read about how different lobes, and how they are effected by brain trauma.  I can't remember exactly what lobe was effected, but I remember hearing about a person came through the surgery with only one emotion, happy.  That wasn't me.  

Management ... basically, that's the operative word in my live now.  Always chasing something beneficial while I'm holding on a tentative status quo.  Like the response to the initial meeting with Rudnick ... the following day, we met with the hospital psychiatrist, and it was awful.  After two days of that, she prescribed Klonopin, an anti-anxiety med to help me cope, and he help a ton, but that's my point ... I'm now always chasing something more beneficial.  It's a kin to the bass gear I have ... the more I acquire good gear, the more better gear I need.  They call it G.A.S., or gear acquisition syndrome.    

To me, about the only difference is, the stakes are little bit higher now.  

A couple days later after the initial meeting, Rudnick introduced us to Temodar, the second iteration.  For the longest time, it was exactly how he described it, basically, if I follow the the instructions correctly, it really shouldn't bother me too much, and for the longest time, that rang true.  However, it's gone wry in the last four or five cycles.  The last one was the worst yet.  Like I said, this is getting problematic.  

Something to talk about next week with Rudnick when we go over the results of my next MRI.

lee 

  

 

True Therapy

This is our "kids", from about 10 minutes ago ....

Esme, lab/pit, and Mijo, chihuahua.

Progress

After I got home from the hospital (first time), I did something that I haven't done in a long time ... I started journaling again.  Funny thing is, my degree is journalism, but after I switched fields, from online writing and copy editing to flexible scope repair, I stopped writing for the longest time.  Every once in a while, I'd get the bug to write, but it was usually fleeting endeavor.  

The way I figured it, writing was always going to be in my DNA, so whenever I decided to get serious about writing, I could just pick it up with no recourse.  

Then I got sick.  It took me a while to realize that the physical challenge of just holding a pencil was a daunting one. 

From December 3, 2007:

And a couple of days later --- progress!  Or something like that  :)

Ok, so what the fuck is "RERATY OCCIT"?  

Or: "Walking upright."

Seriously?  

I think it's code for "You need some more work than you anticipated."

So, to make a comparison from before, some notes I wrote about a song Bob wrote:

 

And now:

Clearly, it's a process, but I don't feel like I HAVE to journal like my life is dependent on it.  

The last journal entry I wrote was from Friday 13, 2009.  It's something.  

lee

Qui Jong

Mood: Sublime.

I'm tired in a good, productive way.  I can dig that.  Earlier today, I went to Venice with my friend Jane to a qui jong session/class.  She's been there before; it was my first time.  Honestly, I don't know much about qui jong, not do I know anything about tai chi.  All I know is that Jane told me that her qui jong master supposedly shrinks cancer and tumors.  

Back it up:  I never gave even one of a fraction of a tiny shit about healing, holistic remedies, and the like, until after I got sick.  I don't mean to say that everything in that realm was total bullshit ... on the contrary, I'm always had a healthy appreciation of yoga, pilates, and the more meditative martial arts.  Just never had the time nor desire so pursue them.

Of course, I did get sick, but even then, I just assumed that I would rehab myself into a normal state of mind.  

Right.

At first, it was to easiest to just ignore it, or maybe pretend to ignore it.  What ever it was, it didn't work.  

So, I got sick again.  Even before that I knew that I had the staph infection, my head was leaking from the original scar point.  I was always tired, but that's what cancer patients dealt with, so I didn't really think about it too much, that was just my lot in life.  

After the second surgery, I had a conversation with Bob, my best friend.  Bob that he had been working with Ron, the energy healer, and of course, I went, have had great results, and now I swear about him.  

And I'm thinking, what else?  Ron had suggested a few things:  coral calcium, deep tissue massages and a high colonic, among other things.  

That's where Jane comes in.  Jane was dating my friend, Buckle (Rob Arbuckle), and the first time I met her, it was neither here nor there.  Nice enough, whatever.

The second time I met her, it was Josh Harrison's birthday.  Again, same story.  Obviously, I was already looking for meditative therapies, to supplement my healing process.  As we left the original party to go to another one, Buckle suggested that Jane could help me.  So, we started talking, and offered to give me a massage, one of the painful deep tissue massage that make you feel like there is a God, and he's a vengeful being.  

Yes, I understand the concept of the deep tissue massage, especially because I had another one today for 15 minutes today, and it was even more painful as the previous one.  But afterwards, I felt amazing.  

Which get me back to the original point ... the master of this particular class is a guy that did some shit that I still not sure if it was real or what.  He never touched me ... but all the same, I swear that I was physically moved.  I could feel my body being pushed and pulled, back and forth.  

It was a 2 hour session, but no one really talked.  I understand that one of the biggest parts or qui jong is meditation, and between the class and the massage, and I feel spent, positively.  I really can't describe into words about the experience.  

lee