before the storm

I’m headed to the hospital in about an hour for this initial procedure.  They’ll remove as much of the lesion/ulcer as they can, in order to slice it up and get good diagnostic information.  They should have a better idea by wednesday or thursday about just how much they’re going to have to remove next week. They should be able to give me a clearer sense of the risk of ED.. maybe even a clearer sense of the need (or not) for follow up chemo.

Yesterday really felt like the calm before the storm.  It was a still, cool day in New York.  A last day before things start rolling fast.  Tomorrow, I’m guessing that I’ll be in a fair amount of discomfort.  Wednesday and Thursday, I’m guessing I’ll have appointments to discuss the findings and prepare me for what’s to come.  Friday or Saturday, I’ll obviously have to throw some sort of “fairwell to assholes” party.  And Sunday, undoubtedly, I will need to empty myself out entirely for the surgery.  I feel as though it’s all going to happen instantly.  I’m already dreading a week in the hospital.  One thing at a time!

Wish me luck.

UPDATE:

I’m home.  It was a long day.  It’s definitely cancer again, and they will definitely be amputating.  There is no bone involvement (this is the good news, though I didn’t even know it was a risk!!).  It is unclear when exactly this will be.  Maybe not monday after all.  Probably next week still..  slim chance that it’ll be the following week.

Thanks for all your good thoughts and well wishes.  I’ll write a real one in the morning.

waiting game

We’re in a bit of a hurry-up-and-wait holding pattern at the moment.  There are little odds and ends that need to be taken care of – chest x-ray yesterday, ekg today.  standard pre-op requirements – but we’re basically just hanging out waiting for monday, and then the monday after that. While I’m not in a complete panic,  I AM finding it pretty hard to focus on much of anything (haven’t been out to the shop since monday).  I’ve received a mountain of emails from you all, and I hope you’ll understand if I’m not on top of responding to them individually.  They mean the world to me and please keep them coming, but I’m a little distracted.

In the absence of any kind of real update, I’d like to propose a bit of a design challenge.  I’m a little freaked out about the idea of ending up with an asshole on my torso.  Real vanity left me years ago when I developed an second head of hair surrounding my bellybutton and realized that I’d never really be beautiful without a shirt on, but THIS is a new level entirely!  I think it may be time to get all inked up.  There are two sort of obvious approaches..  my first thought (best thought) was the literal:  I’ll tattoo a very accurate looking large intestine terminating in the new spot, just to clear up any kind of confusion that might result.  Then there’s the camouflage approach..  perhaps a big rose bush where the stoma is just one of a whole bunch of roses.  You get the idea.  My brother suggested a mess of puncture wounds.  That’s a little gross.

Please post your ideas!  In written form would be fine..  but drawings would be even better!  I’ll post them!!  (maybe it’s possible to even put them in your comments?  anyone know?  Megan?  oh..  and any tattoo artists out there who want to be involved, I am quite serious about this!)

Thank you thank you for staying tuned.  Thank you to all who’ve written.  Thank you for your thoughts and prayers.  This would be a pretty lonely/scary time for me and Hill without family and friends.

UPDATE!!

Kafkaesq on flickr did a little gallery of ideas on top of the “shape of things” photo.  I particularly like the tomato!  (click on the image to go to his flickr stream and see the rest!  thanks, Gene.)

So I decided to furnish you all with a slightly easier shot to work with!  Get it here

Here’s the colon idea.

The shape of things.

Thank you all so very much.  After the kind of support that you offered during the first go around, I shouldn’t be surprised by this sort of outpouring..  but I am.  I’m once again humbled and grateful.

Here’s what I know after yesterday:

Monday the 12th I will go on the table for a look see. He will take extensive biopsies.  If he can remove the entire lesion, he will.  The location of the lesion is not precisely where the old tumor was.  The biopsies will help determine whether this is a new primary, or a recurrence (though it’s a little unclear what the implication of either is).  During this procedure, the surgeon will gather what information he needs in order to proceed with the actual surgery. Like getting measured for a suit..

Monday the 19th I will go back in and be eviscerated.  It sounds as though there is less than a snowball’s chance in hell that this can be avoided.  The operating room has already been reserved. They will remove my sphincter/rectum and the lower portion of my colon, and re-route the plumbing to the front side of me..  Gross.  If you are compelled to feel really sorry for me, you can google up some images of colostomies.  They’re super yucky.

I will spend a week in the hospital post surgery.  I’m not sure how I’ll manage that.  I can’t imagine that the coffee is any good.

When I asked about follow-up chemo, my doc said that there wasn’t likely to be any.  Then he told me about the drugs they would use if they DID do any.  I don’t feel very reassured.  My surgeon will remove lymph nodes while he’s in there.  Tons of them.  If they find any cancer in the lymph nodes, chemotherapy will be necessary.  The sense is, however, that if cancer had spread to the lymph nodes it would have showed up in my blood work, and it has not.  That’s good.

Apparently there is a significant risk that I will loose erectile function.  hmm.  I guess we’ll burn that bridge when we come to it.

This is all happening pretty quickly.  Tuesday morning, for all I knew, I was cancer free and the lesion they had seen was nothing but the body’s response to copious amounts of chemo/radiation and surgery.  Something that was treatable with some sort of suppository..  (ha!!  which sounded pretty distasteful to me.  This new version puts THAT in stunning perspective!)

Hill and I are doing well.  Maybe it’s shock.  I think more likely it’s just reality.  We’re surprised again by the calm with which it’s possible to adjust to something when it simply IS.  There is very little question that this will be a huge adjustment.  (I’m appropriately terrified, to be frank.)

regretably

The short version is that I have cancer again.

Two weeks ago I had a regularly scheduled colonoscopy.  They found a lesion very near the site of my original tumor and surgery.  As a precaution, the doctor took a biopsy.  I got the results finally yesterday, and they found viable cancer cells.

I met with my surgeon yesterday afternoon.  He has maintained all along that the route we took was a risky one.  The gold standard in a case like mine is complete resection..  to speak plainly, ass amputation.  We had gone the route that we did to try and preserve my continence.

Most immediately, the course of action will be to take more thorough biopsies in order to determine what sort of margins will be necessary.  That procedure is scheduled for Monday.

I don’t know yet what the full ark of the treatment will look like.  I don’t know how soon surgery will be or whether or not it will be followed by chemotherapy.  This is all pretty fast breaking.  I should know more by the end of the day.

The good news is that this gives me something concrete to write about!  For the last nine months or so, I have been dealing with an increasing level of discomfort/pain that seemed to be connected to the treatment of the original cancer, whether that was chemo-radiation, or the surgery itself.  I had not found a way to share that part of the story here on the blog.  It was hard to see a way to discuss unexplained aches and pains and the accompanying listlessness/depression without sounding pretty ungrateful to simply be alive! It has always been my intention on this blog to be as honest and forthright about my situation as I can be, and yet describing the last year has been difficult.  On some level, surviving cancer has been as difficult as treating it, but in a way that is much less concrete and as such, much harder to describe.

I will post updates as they come.