Saturday, February 2, 2013

the picture gets a little clearer.........

     Of the many things that I have learned over the course of having brain cancer thus far, one of the best is that I must do my best to control panic.  Real true panic, not the sweaty palms first date kind, is cruel and mean.  Upon finding out that I had a brain tumor, I would reassure myself that it would be benign, they would take it out, one and done.  If I didn't cling to this belief, I was gonna lose it plain and simple, but more on panic in a second.

      I did my best to forget that my hopes of a cyst had been blown to pieces and that I had a tumor.  (remember my wife and I were on the way to Toys R Us for our son's second birthday when I got the fateful call) I told myself that God will never put more on us than we can bear without giving us a way out (I still tell myself that today).  I did my best to decide that I was going to enjoy the rest of the day regardless of the news I had just received.  I did not want to look back on my boy's second birhday and feel like I ruined it because I was too busy sulking in a corner.  We returned from the store bearing all manner of goodies and went to my wife's sisters house where the party was to be.  My wife and I are from two different cities so the two families are rarely around each other so there was to be another party upon our returning home.  My in-laws quietly asked what we found out and so I told them.  They didn't really react how I would have expected them to, but I didnt react the way I would have guessed either.  They simply offered kind reassurances and said they would hope and pray for the best.  Not much else was discussed about the matter so on with the party!

     We decided to stay in Wichita for a while longer and extend our vist a little, although I really dont know why because at that point I was to wrapped up in fear and misery to be very good company (my birthday attitude was pretty short lived).  I would mope and pout and cry all day and then at the end of the day, I would regret wasting all of it but be too tired to do anything about it and just go to bed.  But the next day would play out the same way in the same viscious cycle.

     So lets discuss what I knew at this point;  I had a brain tumor, status of malignancy unknown,  I was to be scheduled for surgery but I didnt know when.  This is the sum of what my neurosurgeon's office told me followed with a friendly "have a good weekend!".  I would try to call them  but the doc was always too busy in surgery or seeing patients to call me back.  I would be reassured of a call back the next day but it would never come.  So during this time all I felt was sheer panic.  In my head, this is how things were going

        [I have a brain tumor of unknown threat level probably growing vines through my head at blinding speed about to stop all of my life processes and my doctor is too busy to pick up the phone and any other neuro surgeon cant see me for months]

       Now when I say real panic, the previous statement is it.  It is the kind that filters in through every nook and cranny of your being and then twists your gut into a cold knot.

     [NOTE: if you are reading this and are newly diagnosed with a brain tumor, try not to make this mistake.  I am not in any way saying that if you do feel this way you are wrong.  It is totally natural and everybody is different.  In my personal experience when I kept panic at bay I got more accomplished and felt better at the end of each day, but that is just me]

    At this point I was a total wreck,  I felt like there was a giant clock in my head obnoxiously ticking reminding me that I probably had a lot less time than the average joe.  I knew I had to get my feelings under control, but I just didnt know how.  I would stress about having a brain tumor, then I would worry that the stress would make the tumor worse so in turn I was stressing out about stressing out.  This level of emotional behavior takes its toll and it did.  I became irratable, and snappy and generally hard to get along with.  I felt like nobody around me was taking this seriously.  I felt like I could die but that wasn't sinking in to them.  I felt like a wounded dog in a corner, fearing for my life and I was lashing out at those closest to me.  I now know that they just didnt know what to say (i woud not have known what to say in their shoes either).  In hindsight I can tell that my wife is much more amazing than I every could have thought.  She took my general bad mood and crankiness and just dealt with it.  She would be upset that I would treat her badly but was quick to forgive and to understand.  She is an amazing woman. 

    I wasnt getting the answers I wanted hanging around Wichita so we traveled back home.  Let me remark that to me, the process of being diagnosed with brain cancer is kinda like getting handed a new polaroid picture.  The picture starts off really blurry, you know its a picture you just dont know of what the picture is yet.  I knew I had a brain tumor, but not much else.  Well another phone call came.  The lady on the other end of the line said "low grade glioma".  I wasnt sure what that meant I just knew it sounded really scarey.  But the picture was getting a little clearer.  At least I was starting to get a feel for what I was up against.