Month: October 2010

The other day in the bathtub thinking about chemotherapy, I had a brief flash of the sort of bravado that I had going into treatment the first time around.  Just a glimmer of “Bring it!”  It passed really quickly.

It’s a good thing that there was any feeling at all of being ready for it, though, because the ball is rolling again.

Today I’m going in for a pet ct.  By Monday we’ll know whether or not the cancer has taken up residence in my liver/lungs etc.. fingers crossed hard.  Next week I’ll have a port placed, and on the 15th I’ll start chemo.  I had to fight for the 15th a little.  He wanted to start on the 8th, but that would have put round two on the week of thanksgiving, instead of making that a week off.

“If we start on the 8th, the week of thanksgiving will be a chemo week.”

“so?..  I’m going to be in town”

“That’s not what I was worried about.  It’s the only holiday I celebrate..  I want to enjoy it.  I cook for a lot of people on thanksgiving..”

“someone else can do the cooking.”

I gave him the steeliest look I could muster and he relented.

So it’s all still a LITTLE way off, but it’s bearing down.  Gah.  No fun.

I’m feeling better and better.  Physically, mentally.  I have moments during the day when I’m pretty comfortable and optimistic (I’m remembering a chocolate genius break up song where he sings “I forget about you at least twice a day”) .  Other moments when the pain gets away from me a little.  Evenings are strangely difficult..  5pm seems to be a real low point.  5pm or so is when I resort to pain meds (and bourbon).  For the last 3 days, though, I haven’t needed any during the rest of the day.  Progress!  In two weeks, when the chemo starts, I’ll probably be feeling pretty good!  *holds head in hands*

I’m getting pretty excited about the Assless returning from the painter with its shiny new paint.  It’s going to have a pretty different look!  Can’t wait.  It’s been about 6 weeks since I’ve ridden a bike.  Even though that thing is a torture machine, I’m looking forward to have my range extended a little.

Just a few days later now and I’m feeling worlds better.

We had Seth and Nicole over for dinner and ate outstanding food, we hung out with Galen from the left coast, I spent a day at the pool hall, Caroline stopped by and helped me clean out my shop which had been just sitting these last 5 or 6 weeks (so sad), Marcus stopped by and dropped off some coffee.  (my buddy S.T. stopped by to show me the fancy new prison issue shoes that he’d gotten during his 30 day stay at Riker’s Island!!  with a big apology that he’d been thinking of me the whole time and felt terrible that he had no way to tell me where he was or why he wasn’t stopping by to check on me! “bro!  I got out 4 hours ago..  I came straight here, buddy.”).

I want to thank you all for your support.

Those of you writing with encouragement, it’s hard for me to even express how important your presence has been for me throughout these last years.  Telling the story of this bloody process has been a powerful tool for me in coming to terms with it all.. in understanding it.  Telling a story without an audience is just talking to yourself (and there’s been some of that too).  Knowing that I can write it down here, and that you’ll read it, is good medicine.  You’re helping me create a valuable record.  Memory is fallible, often mercifully.  I looked back through pictures yesterday and was reminded that just a month ago, I was stuck in a hospital and that just getting out of bed to walk a few steps in a hallway was a complicated process that involved organizing tubes and strategically draping hospital gowns.  There IS progress after all!!  The other day I went out in public for the better part of the day without even wearing a maxi pad!!

Those of you who dug up Megan and Nick’s donation link, it’s really above and beyond the call of duty.  It makes me feel a little awkward to receive money from you all at a time when I know that EVERYONE is stretched.  I am grateful, and I will have to just assume that you are giving within your means.  Thank you.

Ok.  That’s it for now.  Tonight I’ll make some braised lamb shanks and polenta for Katypang.  Maybe tomorrow I’ll finally put up the braising instructions that I’ve been promising!

I’ve been feeling at loss for words over the last little while.  Yet, it’s not really in the spirit of the thing if I only write when I’m feeling up-beat.

I think that the reality of my situation has begun to really sink in, and it’s leaving me feeling pretty bleak.

I shit in a bag now, and on balance I’d say I’m getting sick of it more than I’m getting used to it.  It’s an added appendage in an awkward spot and the knowledge that I’ll have it for the rest of my life is depressing.

I’m in the countdown to 6 bloody months of chemotherapy.  I’ve been through it before and it was awful.  It’s hard to know how to put lipstick on that particular pig.  Especially hard when the chemo is targeting cells that we’re not even sure exist, and where its success will be impossible to measure.

I’m still experiencing a good deal of discomfort from the surgery.  There is progress, but it is incredibly slow.  It makes it very hard to get a good night of sleep.

I am trying to take care of myself..  to relax and give my body a chance to heal (to get healthy enough for the chemo!), but am having to spend an inordinate amount of time on the phone with the insurance company trying to make the case, with little success, that a $1700 reimbursement for a $25K surgery is inadequate. I’ll detail the absurdity of that situation in a separate post.

My family is dealing with the situation admirably, but it’s quite clear that everyone is feeling the weight, and at a time of year when some measure of cheer is necessary to combat quickly shortening days, no one seems to be able to muster it.

I’m worn out.

Being proactive, finding solutions, addressing problems..  It all takes energy, and over the last handful of days I simply haven’t had it.

I can write just as long a list of the the things that I have to be grateful for.. of the reasons that my situation ain’t so bad.  The fact that we have laundry in our house! (over the last few weeks, doing the laundry at a laundromat would have been a full time job at the rate I was soaking through maxi pads!).  The fact that some school mates and professors of Hill’s put enough money on a gift card to our supermarket that we won’t have to pay for groceries until thanksgiving!  But as they say, every silver lining has a cloud.  Lately I’ve been aware of the clouds.  Fuck.

It’ll pass.

The Assless bike made it’s way back a few days ago from a gallery down in Virginia.  With a little help from Ed, I got it all taken apart and packed up to go to the painter for a face lift.  I have trouble sitting on a foam donut at the moment..  a bike seat isn’t even a question.  So it’s back to the assless for the time being.  When I built it, I was so eager to get on and ride the thing, that I just rattle canned it and went.  This time, I’ve got a little more time on my hands..  I think it’ll be a couple of weeks still before I’ve got the flexibility/range of motion in the whiffs to be able to ride the thing.  So.  Look out for a fancy new paint job on the assless.  Hot dog!

I’ve been busy working out my wardrobe.  Well.  That’s not entirely true.  But we might as well discuss it.

The stoma is just above my waistline..  Just above the spot that my pants tend to hit.  Which means that the bag hangs down below.  Or, in other words, the waistband of my pants hits about mid bag.  So.  If I want the bag to be inside my pants (and this is nice to do sometimes, to avoid scaring small children and generally grossing people out..  my first delivery of bags came, and due to an error in product number, they’re all clear!  the sort they use while you’re in the hospital to better monitor what’s going on..) I can’t hold my pants up with a belt.  Nor can I wear pants that are tight enough to stay up on their own.  If I do, I’ll constrict half the bag!  So, SUSPENDERS obviously!  I’ve always loved suspenders.  But I’ve never quite felt I could get away with wearing them..  There was always also the small problem with suspenders that if you wear a shirt OVER them, and have to get your pants down in a hurry, you can be in REAL trouble.  I no longer have any compelling reason to EVER get my pants down in a hurry!!!* As long as my pants have a fly, I’m AOK.  So these days I’m rockin’ big pants and suspenders.  Since I’m about 10 lbs lighter than I was before surgery (and more than 20 lbs lighter than I was when I finished chemo the last time!!), all my pants are big pants at the moment.  As I fatten up again in preparation for the next round of chemo, I may need to get some more pants. I’m also wearing maxi pads!  The perineal incision continues to drain, and without something in there to catch it, I’d soak through a pair of pants in no time.  The great thing about maxi pads is that they have a sticky side!  So unlike gauze pads or something similarly medical, I can stick them strategically to the inside of my pants and get on with my day.

When I last wrote I was dealing with an infection.  It seems to have cleared up with a week long course of antibiotics.  I saw the surgeon yesterday, and he was very pleased with how things are going.  My stomach incision is pretty entirely healed!   The scar is still quite red, but there’s no pain.  There’s no pain at the stoma either.  My ass is taking forever, though.  He explained that this wasn’t that unusual.  A lot of the tissue that they pieced back together there, after removing all that they removed, was tissue that had been heavily irradiated two years ago in preparation for my original surgery.  He said that tissue that’s been exposed to so much radiation can take MUCH longer to heal.  The bright side of this is that they can’t start the chemo until I’m well healed.  The surgeon said yesterday that he felt we needed to wait at least 3 or 4 more weeks.  Music to my ears!  On the less bright side, I continue to be in quite a lot of pain with it.  Sitting is uncomfortable.  Lying down is ok, but only for so long.  My possible lying down positions are limited by concerns like the bag, and the flexibility of the ass incision..  I’m waking up a lot in the night.

My spirits are good.  Or, at any rate, I’m not depressed.  I AM a little lost these days.  Bored, but not finding the right thing to keep me occupied.  During the spring and summer things felt like they were headed in an exciting direction for me.  I felt as though I was really hitting my stride with the bikes.  I had made a string of bikes that to me, in subtle ways, were really getting to be pretty beautiful.  It was feeling as though it was time to get a bigger space, to put myself in a position to be able to up production.  I had a few ideas developing around the fenders, and etc..  It had always been my attitude that while recurrence was a possibility for me, I was unwilling to allow it to keep me from doing daring things.  I wasn’t going to let it scare me from my ambitions.  Now that I HAVE recurred, however, the equation has had to change a little.  Particularly since the cancer has made it into the lymph system, the question is no longer if, but when will I recur, and how bad will it be, and how involved will treatment be. I visited my oncologist yesterday as well, and he informed me that I’d be getting a port again (obviously), and that this one would stay in for 5 years minimum.  It’s a new game.  Between healing, and the sort of unconscious mental work I’m doing coming to terms with the new rules, I’m pretty tired.

The weather here in NYC has been beautiful.  Cool and mostly dry.  My two out of town brothers came to visit over the weekend, and it gave me quite a boost.  It’s a good time of year to eat!  I guess I’ll probably, FINALLY, get around to writing directions for braising weird cuts of meat!

*in addition to having my ass sewn shut, my penis doesn’t seem to get hard.  The doctors ask about it.

“have you had an erection?”

“nope”

“have you tried?”

“Um.. yeah.”

“nothing?”

“not a thing..”

“not even when you wake up in the morning?”

“no doc..  not even then”

Apparently after this sort of surgery, it’s perfectly normal to have no erectile function for a while whether or NOT you’re ever going to get it back..  Just local trauma.  From the nature of their questioning, though, I think I may be getting close to the time when it would be coming back if it was going to..   Fingers crossed.  Erections are fun!

So yesterday turned out to really suck.

I was scheduled to meet with my oncologist at 1:00 to discuss the schedule for treatment.  This wasn’t a conversation I was very excited about.  We had talked about starting chemo a month or so after surgery.  Weirdly, it’s already two weeks after surgery now (!), and I can do the math!  Before chemo begins, I need to have another port put in.  Oh boy.

I woke up feeling not quite right, however.  And by noon, when it was time to think about heading out to the appointment, I felt really crappy.  I called the office.

“Dianne?”

“Daniel..  hi” Daniel is my first name.  Ezra is my middle.  I’ve been Ezra since I was about 2.  Dianne calls me Daniel just because she likes to.

“I have some brand new very acute pain at specific spot on my pereneal incision, a swollen gland in the groin, and a fever of 102.  I assume the doc will want me on antibiotics.  You suppose we could call that in, and I could come visit you another day?”

“Ah.  I’ll check with the Doctor P.”

I knew that there was no way I was going to get away with it.  Thought it was worth a try, though.  I was feeling so crappy that I wasn’t even able to get all that excited about the mailman showing up with my new camera (!!!!).  I’d had chills for the last several hours, and just wanted to get under the covers with the dog and warm up.

No such luck.

“Daniel?  The doctor says that he absolutely needs to see you..  and he called the surgeon, who wants to see you as well..  at 1:00, could you just come here first, and then plan to go there?”  It was 12:30 at this point.  So that’s how our day in taxi cabs began..  fast breaking.

To shorten a long story, I went to see and was examined by both docs.  Both agreed that I probably had some sort of infection and that I should be on meds.  The surgeon, however, wanted a CTscan, just to be sure that there wasn’t some sort of serious abscess that would need to be drained (this, he explained, would mean being re-admitted to the hospital, put on IV antibiotics, and stuck with a big needle.  I’ll pass).  So, off we went again, in our third cab of the day, to east river medical center for a scan where we waited for two hours (an hour to get insurance authorization, and then an hour to drink up the contrast solution), and finally by 5:00 we were in cab #4 headed back home.

The result?  A course of antibiotics. Can’t help but feel that the 4 cabs were unnecessary. Can’t help feeling a little miffed that instead of being snuggled in bed, I had spent the day sitting!  Sitting is not my best sport at the moment.

Better luck today.