Archive for September, 2011

with hairs

The last batch of blood work shows the CEA level dropping..  if only marginally.  My doc is suitably soothed, and doesn’t feel that we need to even look at the blood again for a month.  *sigh*

It’s amazing that our sense of well being can hang on the slight changes of a number that we don’t even understand.  ha.  Just keep rowing!

For your amusement and amazement..   Danny Hart. I apologize for the advertisement in the video, but the commentary is too priceless not to share!

To say

That my touring bike came back from the painter a few days ago, and I managed to get it built up.  I built the frame back in the winter time during a round of chemo that was cut short because of low blood counts.  One day less of the poison made me feel enough better that I was able to get out to the shop for a few days.

The project stalled in that state though until July, after I had finished treatment AND finished the shop renovation.  It feels pretty nice.  The first bike I’ve had with gears in over 15 years!

Adam Leddin from Cycleexif.com was nice enough to interview me for his site.  It went up this morning.  Thanks Adam!  Go take a look.

I had another round of blood work last week.  We should have some results on Monday.  Hoping that this pesky CEA marker has just resolved itself and we get to marvel at the mysterious nature of the body!  I will post the results here when I have them.

Thanks for staying tuned.

Fish tacos, obviously

I was in the shop yesterday morning working on Nose Bike mk2 when I got a call from the doc’s office.

“He wants you to come in right away..”

Fuck.  Usually he’s willing to give me GOOD news over the phone.  I figured this probably meant that they had found metastases.  Was starting to wonder how many months they’d give me, and what sort of motorcycle I would run out and buy (? the odd things that pop into your head when you’re pretty sure you’re going to die).

To re-create the conversation that Hill and I had with the doc, would be a nearly impossible exercise.  After an hour or so, what we were left with was essentially this..   The petscan showed no change and nothing new.

The facts are these:  I have a sudden rise in CEA marker.  A second blood test verifies the rise, and in fact shows a slight climb from the first.  The petscans have shown a spot in the area of the surgery that we have been tracking SINCE surgery which has been trending towards resolution, and which is consistent with the sort of inflammatory response you would expect from such an invasive procedure.  Why it is taking so long to resolve is unclear.  It is not getting worse, however.  There is neither growth, NOR increased uptake.  Because of its location it is not possible to biopsy this spot in a meaningful way.

My doc is feeling pretty freaked out by the elevated CEA markers.  He wants to give me more chemo to see if it makes those levels go down. There is no cancer that we can see, but if the CEA levels go down when I’m on chemo it could indicate that there was some hiding there! (tumors have to be pretty sizable to show up on a petscan).  In other words, using chemotherapy as a diagnostic tool.  I told him that I would not be doing this.  He acknowledged that the approach would be totally renegade and that it is never done, but that he wanted to anyway.

Hill and I got back home yesterday feeling as though we’d been put through a food processor.  When it is entirely plausible that you could be facing terminal illness, and your doc says ‘get in here right away,’ it’s pretty hard not to let your head go to grim places.  Once you’re in that head space, it takes a little while to settle back down.  Still this morning feeling as though I got in a fist fight yesterday.

We will continue to monitor the CEA levels.  We will continue to do frequent petscans.  We will continue to wait around for stage 4 cancer that could be lurking right under the surface.   In the mean time, I’ll be building nose bikes.  (the Cyrano, the Babs, the Steffie, the Shumlin..  the Pinocchio.. you get the idea).  I’m obsessed.

This from my mother yesterday-

Allegory: you are trapped in a dark room with a homicidal maniac.  He might put a knife to your throat any minute — or he might get bored and head off to a bar.  You have the option of wrapping yourself in shit and stinging nettles because word has it that homicidal maniacs hate that combination. Or you can ignore the bastard  and make some fish tacos.