2009

Since I last wrote we’ve had Christmas and a new year.  It’s been a pretty wonderful time.  My step father has been in town from Kathmandu, my older brother and nephew got into town on new year’s eve and are staying through until tomorrow.  It has felt great to have family around, and has felt great to have Hill be a part of that family.

The combination of the avastin and the oral 5FU have left me feeling pretty flat.  No nausea, really, which is a huge relief, but no energy either.  The pins and needles in the hands have persisted to enough of a degree that I haven’t really trusted myself to work in the shop.  I have been using the time to learn some very powerful 3D CAD software (solidworks).  If I can’t actually go out into the shop and build it, at least I can model it in CAD and take a look..  see if it’s worth making once I’m able.  That’s been pretty fun.

Yesterday morning by 11:00 I was in an MRI tube having my brain scanned.  Very early yesterday morning (2:41) I had a pretty big seizure.  I’m nearly certain that it was the scariest thing I’ve lived through.  I got up during the night to use the bathroom.  I was pretty dizzy on the way there, and felt disoriented on the toilet.  After an unproductive sit, I went back to bed.. still dizzy, and lay down.  I’ve been having some chest pain associated with exertion, just as I did over the summer when I got anemic.  When I lay down in bed, my chest was tight, and sore, and I could feel my heart pounding. I must have blacked out.  I woke up convulsing and pissing myself in bed, with the lights on, and Hillary standing over me crying.  It was about 15 or 20 seconds before I could even respond to tell her I was ok (and apologize for wetting the bed..  how embarrassing).  As soon as I was able to move I went to the bathroom and puked up the contents of my stomach.  Hillary called my parents, and they were there in about 30 seconds flat.  My step father is an MD, and asked the important questions.  He called Alberto.  I went back to bed, exhausted.

The scan ruled out a bleed in the brain, and RPLS which is a pretty rare but reversible reaction to Avastin.  No one has any other specific ideas about what might have caused it.  We’re in a bit of a wait and see pattern now.  If I never have another seizure, it will be too soon.

In researching the whole thing, Alberto discovered a rare (2 in a 1000) alergy to the oral 5FU that causes bronchio spasm (the same thing that Asthmatics suffer).  He’s pretty sure that’s what’s causing the chest tightness/pain I’ve been experiencing (though not the seizure).  Needless to say, I’m off the drug.  Back to the I.V. version.  I’ll start up again in ten days.  In the mean time, I get a little break.  I need it.

0 Replies to “2009”

  1. Oh, Ezra, babe.
    That’s a MASSIVE bitch. Please please please stay safe and be careful.

    Please please keep us posted.

    I’m thinking of you.
    *big hug*

  2. My brother had a seizure that was totally scary- he was non-responsive and convulsing, and then when he came to he couldn’t move his right arm for like 15 minutes. He went through similar testing and they found nothing, and he’s never had a problem since. It’s really scary when it happens, but it sometimes does just happen for no predictable reason. Take heart.

    Good hearing from you, and best wishes for a warm, loving, and healthy new year.

  3. my wife used to have occasional seizures, generally in the immediate aftermath of a stressful period, particularly if dehydration was involved (such as from post-stress alcohol use). very scary to witness (i feel you, hill). last one was 15 years ago. no cause ever identified, no treatment ever undertaken. not part of our lives now. this is just to say that sometimes it’s nothing. and you’ve certainly been under a lot of stress, bad and good. big hug. you’re an inspiration, unwitting i’m sure, for transcendently graceful response to harsh circumstance.

  4. Whoa –
    Scary. The nurse in me wants to know if they are going to start you on Dilantin ???

    I hope that never happens again.

    As always,
    Sending good thoughts/

  5. You are in my thoughts and I wish all this to be behind you! I hope your New Year will just bring better and better health your way. I hope you or Hill never experience anything as frightening as that seizure again.

  6. dear ezra. dear hillary! crap. scary and unnerving. glad you have so many folks around you to help out. i’m sorry you had to go through that. thinking of you….

  7. Wow, this is so scary! I can’t even imagine. I am glad to hear nothing severe has been discovered to be the cause.

    I had an allergic reaction to the Oxycontin they had me on after I tore my leg off, and it scared me to death. I was alert, but couldn’t speak and my eyes were bugging out and bulging. I couldn’t breath. My mom walked in saw me and called my doc right away. I didn’t even realize anything was happening because I was so out of it from all the meds.

    You will continue to be in my prayers. Cheers to a new year, and more hope. 🙂

  8. hi ez. for no justifiable reason, i found myself low and listless tonight, wandering aimlessly ’round the ‘net. took a cruise through your flickr archive, which helped (damn, your stuff is so good…the whimsical shots never cease to make me smile). came over here and, ironically, this latest news helped as well. here’s how: your strength (and Hillary’s, to be sure) is infectious. what you’re fighting is obviously elusive and unforgiving. yet you keep going, keep shooting beautiful photos, keep working towards the future that will soon be yours. and keep sharing your story. so thank you. for your strength. and, one day, for the FBC you’ll make for me, and make me smile with every pedalstroke.

  9. Whoa, seizures are scary enough as an observer. I can’t imagine actually having one as you described it. Hope you get better soon. Keep up the fight Ezra. Warm wishes for 2009!

  10. holy crap Ezra, that’s some scary stuff! Hang in there and keep getting healthier, we’re praying for you out here on the West Coast. Puts my minor problems back into perspective.

  11. Oh Ez, what a scary experience, for both of you. I hope you never have to go through that again. Lots of love to you and Hill from all of us.

  12. God! So sorry, Ez! That is so frightening. Keep thinking about beautiful projects for the future. I think enthusiasm and creativity must have some white-blood cell building properties. That’s a totally woo woo thing to say, but I believe it…I am thinking of you always.

  13. Damn you, mystery seizure!

    I’m really glad you went in for the MRI,etc. even if they couldn’t determine the cause. I hope this is a one-time thing, never to return. Somtimes they are like that…

  14. Bless your hearts. How absolutely mortifying for you. You can probably get through just about anything now. Bless, bless, bless both your hearts.