Date sent: Sat 9/7/02 10:45 PM
A Bumpy Road Ahead

 Summary: On August 18th I had my first full-body seizure in many years and the first seizure in 3 years. Though the MRI does not show tumor growth, I continue to experience simple seizures under stress.  So I have chosen to stop working and start Short-Term Disability while I sort out what is going on.  My story follows.  By the way, all my writings can be found at a new address: http://life.katzstein.com.

 I have been doing pretty well – I thought. Working 30 hours/week, taking care of the kids, driving, start to run again.  I even spoke to a local seizure specialist – Dr Smikins about reducing some of my seizure medicines in June.  We decided, “if it ain’t  broke, don’t mess with it.”

 By July, however, Abi was asking me if I thought I was getting weaker on my left.  I did not think so.  Then in early August, I took a stressful trip and after felt bad for several days.

 That Monday, August 12, I went to work, but felt terrible. Driving there, I felt like I might pass out or something bad might happen, and that I should turn around and go home.  I felt similar driving the sitter home after work.

 But I worked 6 hours and the day got better.

 That night after dinner, I played a spirited game of soccer with Zachary, my nephew Justin and friends.  After 15 minutes, my left leg started to weaken.  At first, I ignored it.  But it kept getting weaker so I stopped, walked to the door, and started to open it.

 My leg started to ‘give out,’ so I sat down.  Then it started to cramp, or so I thought.  No it was definitely - a seizing.  AAAHHH!!!!  STOP!!! I thought.  But I felt it spreading, so I laid down.  My whole left side started to jerk uncontrollably. Zachary said, “He’s faking.”

 In a very scared and shaking voice, I said “NO I’M Not!”

 As the jerking spread throughout my body, the kids said “should we call 911?”

 “No,” I said, “call mom on my cell phone.”

 When the seizure had passed, Zachary mentioned that I could not drive anymore. “Who will drive us to school?” Hana worried, trying to express her fear in a concrete way.

 “The doctor lied to us.  They said you wouldn’t have any more seizures,” she said.

 I also felt panic. Having experience with my cancer, I knew a change like this could be an ‘early warning’ of re-growth. So the whole family moved into, “dad’s not well,” mode.  A friend came over to be with the kids while I rested and Abi rushed back from Athens .  I slept most of the next day and Abi took me to get an MRI that evening.  Abi and I compared the films to last years and did not see any difference, so I started to feel a little better.

 That night I laid in bed feeling sorry for myself, but then had the feeling that my soul was still ‘pure and unharmed’ by these events.  I could feel it like a warm energy sphere around my body.  I’ve been reading about how we are more than our physical manifestation, and I could feel that in that moment.  It brought me some comfort.

 The surgeon in Boston confirmed that there was no change in the MRIs from last year, but recommended a 6-month follow-up.

 I was VERY relieved!...but I still did not feel well. I did do work from home, and as long as I kept my activity moderate, rest when I needed to, I was okay.  I tried working for two hours in the office on Thursday, but that was too much.

 Even watching a movie at the ‘wrong time’ or going for a walk and then stopping to talk could trigger an aura.  ‘Something’ happened about twice a week.

 I decided to go on STD till I sorted things out.

 Fast forward to last Wednesday. I saw Dr. Simkins again. He said all the ‘auras’ I’ve been having are really ‘simple seizures.’ Though he did not find many changes since he saw me in June, he said he wanted to follow me closely.  We tweaked the meds a little and he said, “Call in a week and I want to see you in a month.  Don’t even think about going back to work till I see you again.”

 I am in a very weird place.  See MRIs can’t detect changes on the cellular level.  I may not know for months what’s going on.  I’ll be followed closely.  We’ll try to optimize my drugs along the way and in the end – if I show ‘clinical changes’ even without MRI changes – I may need chemo.

 The only known thing is I do not have a confirmed explanation for my current condition.  I only have a watch and wonder explanation.

 I’ve known since the first surgery in 1995 that my tumor type re-grows.

 Someone asked if I thought I was dying. My spirit guides say no.  And I am getting weary of the struggle.

 What keeps me going is love for my family and love exploration.  I want to love Abi and enjoy our children’s growing lives.

 So that is where I am today.  Very glad that Abi is finished with her two years in Athens and back home to do her rotations in Dayton.  The kids are in school.  And I have my books, my computers and a lot of self reflection – one moment at a time.

 With love, kindness, and warn blessings,

 Dan

Dan
http://katzstein.com
http://life.katzstein.com
 

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