Archive for September, 2008

heartbreak.

Paul Newman is dead.

Hill and i did the long drive around yesterday, and pulled into the Lewis’ place around 7:45.  We’d been driving right into the hurricane for the last couple hours of the trip, and by the time we arrived it was dark and VERY windy. We stayed the night at the Lewis’ and the wind was so strong that the house, and bed, were moving all night.  Amazing.  Woke up in the morning, and everything was still intact.  No roofs blown off, no capsized boats.  Basically a pretty still morning.  We had coffee and loaded up the boat.  We’re on the island now, with a fire in the stove, and good coffee in mugs.

I got my computer running and acquainted with dial-up (oh god).  There was an email from Bucky that Paul had died (of cancer).  He is a hero for me.  It’s very sad.  An amazing actor who always played imperfect characters (REAL heros), and a very admirable man.  I met him once.  He was tiny and old, still with crystal blue eyes.  Even though he had stopped acting, I’ll miss just knowing that he’s in the world.  Rest peacefully, Paul.

Portland, Me.

Hill and I are in Portland.

The ferry is canceled (hurricane kyle is scheduled to hit N.S. this afternoon), so we’re driving all the way around.  It’s about a 10 hour drive..  ugh.  It’s through some pretty beautiful wilderness, though.  We’ll have fun.  (If you click on the map, you can see it big.  The ferry usually takes you from portland to yarmouth..  It definitely saves some time)

More soon from the Island.

Cancer Free

Ya heard?

Went to the doc yesterday, and while there are still a few stains he wants to do on the biopsies, the results he has show no more malignancy.  That’s code for no more cancer!  All that’s left is an angry little ulcer, which is still causing a certain amount of discomfort, but shouldn’t be for long.  Sigh of relief.

Everyone seems to be on the same page that I WILL need surgery.. that this thing must be taken out.  They seem to agree also, however, that it won’t need to be a complete recection.  That they may in fact be able to cut out the dead tumor by just taking an elliptical section around it, and then closing up the wall of the rectum without affecting the surrounding muscles (i.e. sphincter), leaving me continent.  NICE.  This couldn’t really be better news.  Well..  I guess it could.. “Um.. we went in there, and couldn’t find it..  I mean, it’s just not there..  we’re sort of wondering if the original results were from someone else.. we’re looking into it.  Meanwhile, um..  you’re fine.  Go ride a bike.  Sorry about all that Chemo.”

But fantasy land aside, this is GREAT news.  When I get back from Nova Scotia, we’ll begin preparations for surgery.  Some surgical consults.  Getting several surgeons to agree that this given surgery will work, etc..  Following surgery, I will have 4 months of chemo (oh god).  And get this: I’ll go in every other monday, they’ll give me a dose in the office, but then send me home with a pump stuck in my port that will drip chemo for the next 48 hours.. I’ll then go back to the office on wednesday and have the thing removed, and get a third dose.  Whoa!  You thought it was all matrixy before!

Hill had her second interview and said that it went very well.  No final word yet, but she came away from it feeling pretty confident.  I’m honestly a little more excited and nervous about this than my own news.  This job would be such a good fit for her.  She’d be in charge of recruiting and managing all volunteers for trans-alt..  as an example, for the new york century (trans-alt’s big annual event) they had over 500 volunteers working.  Holy cow.  She’ll be up to her eyeballs, but it’ll be great fun.  The orginazation is doing such great work, and it seems appropriate for someone living here at the VT. house to be involved in the advocacy side of cycling.  SO.  Keep thinking good thoughts for Hill.  We should hear sometime today or tomorrow.

That’s it.  We’re going to sit down with coffee and see what needs to be packed.. make a list of things we’re likely to be forgetting.  Then, up to VT to pick up an international 14 that someone gave us (yeah timmy!), on to portland to spend the night with kimmy and jon, my best friends from college, before hopping on the ferry in the midst of hurricane kyle, and floating up to NS (we may end up having to drive all the way around).  Ta da!

Oh.  and cancer, you shoulda done some fucking research.  I’m ezra.

I understand there was a little mischief.

Megan told me that I wasn’t allowed to visit the blog yesterday.  I complied.  I’m back now and it looks as though nothing has changed..  I feel quite sure that something sneaky is going on!

The endoscopy went fine.  The drugs were good.  i woke up while he was doing the biopsies, and got to watch..  whoa.  Weird.  Seeing forceps grabbing chunks of stuff, and being able to feel it, but not caring a bit. Straaaange.

The bad news is:  He assured me before the procedure (and after) that I WOULD be needing surgery.  Clearly I have docs on different pages.  I will need lots more information.

The good news is:  Well..  I don’t really have anything definitive yet.  I have an appointment tomorrow morning at 11:00 (just as Hill is having her second interview with trans-alt.  NICE!) to discuss the biopsy results.  The doc did note in the report that the tumor had shrunk and therefore seems to have responded to the chemo and radiation.

More tomorrow in the early afternoon.

It looks as though we will be leaving town on friday to head up to N.S.  It’s much needed, and will be a terrific relief to get there.

Productive Sunday.

Hot dog! I just had the first productive day I’ve had in..  well weeks, at least.  Cleaned and re-arranged the entire downstairs of the house with the help of my good friend Marian.  What a nice feeling.

Now I’m sitting here waiting for the Mag. Citrate to start to kick in (to clean out my own downstairs).  I’ve got a follow-up endoscopy tomorrow, complete with needle biopsies of the now hopefully dead tumor.  I should know by the end of the week how succesful the last six weeks of treatment have been.  This will be the third I’ve had this summer..  after 34 years of nary a one.  The first time I had to do the preparation, I was pretty horrified by the whole ordeal.  Not eating for a full 24 hours leading up to it..  taking POWERFUL laxatives to clean you out..  spending the entire evening near a toilet.  Really charming stuff.  But at this point, after what I’ve been put through since, it doesn’t seem so bad at all.

Alberto has made the suggestion that there is a chance, just a chance, that I won’t need surgery at all.  The needle biopsies will help determine this.  They need to feel quite sure that there are NO living cancer cells left to be willing to leave it alone.  Apparently, if there’s anything left at all, it can come back with a real vengance.  And lemme tell you, if I NEVER have to go through this again, it’ll be too soon, so I’m not all that interested in taking chances.  Still, the possibility of NOT having to go into the hospital for surgery, and stay there for 10 days, and emerge with a permantent colostomy, is hard not to be pretty excited about.

Please cross your fingers for me tomorrow.  I’ll update as soon as I know.

1!

and stay down.

2

This is going to hurt you more than it hurts me, my friend.

That seems to be the core of this whole cancer treatment thing.

Gotta hop in the shower and hop on the bike.

Thanks all for being here with me in count down mode..  This is better than the last few days of elementary school before summer vacation.  (strange that it’s happening as everyone is headed back to school.. I feel out of synch!)

3 left.

Please count down with me.

I’ve had a hard time writing lately, because I feel like I’ve got little positive to say.  I’m whiney these days.  Sick of feeling sick.  Chemo was over LAST WEEK!  But I’m still just dragging ass.  I wake up each morning thinking “Today I will feel good again.  Like myself.  Faaaaast.”  And then it doesn’t happen.

The external burns from the radiation have gotten pretty irritating.  I won’t bother to describe it with any detail.

I need to take a shower now, hop on the bike, and go.  Three more treatments left, and then I’m hoping to pronounce this thing dead..     3, 2, 1, DEAD.  Like that.

Hi.

I apologize for radio silence.

I think I mentioned before how the effect of this stuff is cumulative.  Recovering from this last round of chemo is definitely taking some time.  Thursday was the last day, and my stomach is still not back to normal.

Some nice little moments, however:

Yesterday morning.  I woke up and was suddenly clear headed.  After ten days of chemo-brain, I felt sharp, quick, lucid.

This morning, I rode my bike to radiation.  First ride in over a week and a half.  Even those of you who ride bikes daily experience that child-like AWE when you first get on your bike in the morning..  It glides, it swoops..  magically you stay upright.  It’s heaven.  All I can say is that when you take some time off, that feeling is amplified.

That’s it for now.  More tomorrow.

It’s a sad and beautiful world.

Done!

With chemo, that is. No more until after surgery.  And that will be a much less rigorous schedule, with much less toxic drugs.

It was a brutal three days, but it’s over.  I went for early morning radiation today, and now I’m free until monday morning.  What a relief.  Next week I’ll have radiation every morning, but then I’m done entirely!  GREAT!

I’m feeling about as lousy as I’ve ever felt.  Puking up nothing but bile.  Haven’t kept anything down in several days.  Peristant headache.  If I move too fast my chest hurts.  Somehow though, I’m feeling very upbeat.

I WIN motherfucker!  Now I think I’ll go lay down.