Archive for September, 2010

Finally

At rounds yesterday morning, the crew decided that it was time for me to get out of there.  They planned to irrigate and were quite sure that it would produce something.  I started to pack up my bags and called my mom to come down to the hospital and help me carry out the bags.

It didn’t work.  I still haven’t actually produced anything, for those of you who are curious.  The surgeon had a look at me, though, and felt that pending a good abdominal x-ray showing things headed in the right direction, I could go home.  That was at 9:30 AM.  Finally at 3:00 in the afternoon a “transporter” came to take me down to x-ray on a stretcher.  Hospital policy.  Obviously I don’t need to remind any of you that I’ve spent the last 4 or 5 days walking maniacally (over 14 miles by my estimation).  I could have walked down there at 10!!  Nope.  Not how we do things around here.

I was back on the stretcher ready to go back upstairs after the x-ray when the surgeon and my oncologist showed up.  They took a look at the films and cleared me on the spot.

“Now Ezra.”

“yes”

“we have gotten back the initial results from the pathology, and 6 out of 20 lymph nodes are involved.”

“you mean, “involved” with cancer?”

“yes”

“so chemo is certain?”

“yes”

“6 months of it?”

“yes..   starting in about a month”

“and the prognosis?”

“we can’t say.  You have stage 3 cancer. Maybe we got everything. The tumor is out and so are those lymph nodes”

“but it may be in my liver and lungs?”

“yes..  Or anywhere.  That’s why we have to do the chemo.”

“If the chemo didn’t work last time, what makes us feel it will do anything this time?”

“we don’t know.”

“Ok.”

“And, Ezra.”

“Yes”

“no heavy lifting for the next three months.”

“what’s heavy?”

“nothing heavier than a laptop”

“My wife is heavier than a laptop.”   (“That’s what I’M talkin’ about,” said the transporter..  I’d forgotten he was there.  He was clearly feeling pretty disturbed by the news.)

At that point my 70 year old surgeon said something about allowing Hillary to be on top for a while.  wow.

I am incredibly happy to be home.  It’s hard to put into words.  Last night my parents and Thomas and Evans and Beth came by for dinner.  I made bolognese.    Same thing I made two weeks ago after getting out of the hospital after the exploratory surgery.  Hmm.  A tradition!  I will post directions!

It was a nice evening.  It was a restless night.  Great to be back in my own bed, but sore and anxious.  Today I am having to think about what the next 7 or 8 months will look like.  Obviously I will not be able to work in the shop for a while.  Nothing heavier than a laptop rules out enough of the activity in the shop, that it’s probably wisest if I just don’t go out there.  Two winters ago when I was going through chemo (on the same drugs that I will be doing again) the neuropathy in my hands made it impossible to work all but two or three days out of every two weeks.  It may have seemed pretty tough of me to be “working” right through treatment, but the truth is that I wasn’t working.  Not really.  I spent most of my time feeling anxious about how much I was NOT working.  I think that this time around it may make quite a lot more sense just to find a different job.  Find some other projects to work on.  Ones that don’t involve feeling in the fingers.  Focusing on photography for a while…  I don’t know what, really.

It’s pretty wild coming to terms with just how quickly I’ve gone from being “cancer free” to having stage three cancer.  I can’t articulate it well.  I’m feeling pretty beat up.  Pretty calm at the same time.  I guess I’ve had the last year and a half or so to prepare for this possibility/(eventuality?).

I will go to the surgeon’s office tomorrow for a follow up visit and will probably get more information on the pathology, maybe a clearer sense of what it means.  Probably not!  Ha!  If I do, I’ll report it here.

False alarm

I was hoping to write triumphantly from home tonight about my successful jail break.  It was looking good in the early part of the day.

Yesterday they removed everything but the IV.  Having no bags hanging around my legs felt like such freedom!  My doc told me to walk A LOT.  100 laps in the hallway, he said.  I mapped it with google maps pedometer.  100 laps would have been 15 miles.  I don’t think he meant it.  I did 4 miles.  Another 5 today so far.  It really does help.  Last night was pretty rough.  I had a hard time during the day getting my bladder to function properly.  Pathetic little pees.  It got much worse during the night, and kept me from getting any sleep.  At 5:30 this morning I discovered that if I walked a good piece, I’d get a decent pee as a reward, and with it some much needed relief.  By the time my docs stopped in at 8:00 I was feeling pretty good.  They were both feeling very positive about my progress and said that I could leave as soon as I produced some real stool.

“It’s on!” I thought.  I can do this!

Still waiting, I’m afraid.

In the meantime, since percocet has a negative effect on the movement of your bowels, at the suggestion of my doc, i tried cutting the dose in half.  Serious mistake.  Instead of walking out of here in style, I’ve spent the afternoon writhing around trying to get comfortable.  The pain is finally under control, but it’s pretty clear that I’m here for the night.  GAH!  I was pretty excited about cooking dinner in my own kitchen, and snuggling with my wife and my dog for the night without the beeps and honks of medical equipment all around.  Tomorrow!

On a brighter note, they even removed the IV today, so my movements are unrestricted!  I’ve still got the tail stuck in my arm so that they can re-connect me overnight should they choose, but it feels great to be free of strings..  like a real boy.  I took a sink bath this morning, and put on my street clothes (so sure was I that I’d be leaving!).  It’s been pretty funny wandering the halls today, the IV tail, hospital bracelet and funny hospital socks the only evidence that I’m a patient and not a volunteer of some sort.

Blah blah blah.

Triumph tomorrow.

best monday morning ever

Hi.  Yesterday they capped the epidural in the morning.  They didn’t seem to have all that concrete an alternate plan in place.  There were oral and iv narcotics slated, but since I had only been cleared for a clear liquid diet so far, they weren’t sure about giving me the oral version.. and something about the iv..  Upshot was that by about noon I was feeling EVERYTHING that has been done to me in the last week, and oh my!  Spent most of the day just getting the pain under control.  Pulling the epidural, however, is a very important step to getting me out of here!  Not just because I can’t take it with me, but also because they don’t want to remove the catheter until the epidural is out, and the bowel doesn’t function at it’s fullest with epidural drugs.

SO!!  TODAY!!  I get my drainage tube out (in fact it happened just moments ago..  A resident removed it like she was starting a lawnmower), I get the catheter out, I’m cleared for ALL foods (in small quantities)..  does bourbon count under “all foods”?

“Coffee?” I asked?  “with cream?”

“sure,” she said, “you could have had that already, though..  I mean I know it’s not a clear liquid, but..”

“Ohhh…  you tell me NOW.”

Oh well.

So by the end of the day, I’ll be nearly tube free (I’ll still have an IV), I’ll have eaten food (for the first time in a full week!), I’ll have drunk good coffee, I’ll have peed like a big boy, and I’ll be just about ready to get out of here.  If there are no hitches, they should discharge me tomorrow.  I guess that’s when the real fun begins.

The week has left me feeling pretty weak.  Getting back into the swing of life is going to take a minute.  They’re saying a couple of months before I can lift anything heavy (is a dutch oven heavy?  how about my dog?), or ride a bike.  We’ll see.  I’m trying not to be overambitious.  Planning to go home and get comfortable.  Hopefully be able to contribute around the place, cooking etc.. but not trying to work for a while.  I’ll try to just spend a few weeks being pretty quiet.  Like I said..  we’ll see.

UPDATE!!!!

Catheter is out!  I’m freee!

UPDATE 2!!! Hill has arrived and I’m drinking coffee.  My day nurse is a little puritanical about the pain meds, and held out on me for a while.  All good now, though..  Coffee and percocet.  A winning combo.  Hill is here.  She’s going to get dry (rode here through the rain to bring me coffee..  I don’t have much in this life to complain about when it really comes down to it), and get settled in to do some school work.  I’m going to watch a movie and sip coffee.  More as the day progresses.

Update 3!!  Walked 4 miles today!  Most boring walking you ever saw.  Relearning how to pee.  Weird.  Some muscles have been removed that used to get in on the act.  I continue to be pretty comfortable as long as I get my percocet on time.  Looks like there’s a slim chance that this is my last night here..  It’ll depend a little on whether or not my new ass manages to produce anything besides gas in the next bunch of hours.  They really wanna see some poop before I go!

new room

Yesterday turned out to be  great day. During my final walk of the day, a small miracle occurred and when we got back to the room, everything had been moved! I got a new room! And it’s beautiful!  I big window looking at points east.  I’m on the tenth floor, so it makes for quite a view.

This new room doesn’t have quite the same triage vibe as the step down unit.  Much more civilized.  No alarms going.. no TVs blaring.  I couldn’t be happier.

I slept very well last night.  I had normal dreams.  Not the sort of topical and obsessive ones that have been the norm for these last weeks.  I slept soundly enough that I woke up a few times a little unclear on where I was exactly!  Perfect!

As you can see, the main dressing is off.  Not sure if you can really tell at this resolution that those are all staples.  Roughly 60 of them!  They’ll come out before I leave.  I have to admit that seems a little miraculous.  I mean, it’s a BIG incision!  In just a week, it’ll have healed enough that I won’t risk opening it back up when I’m playing handball?? *winks*

oops

Didn’t manage to get back to any writing yesterday.  Things took a bit of a turn for the worse in the afternoon.  I’m in a step down unit with a couple of patients with elusive ailments.  Both had TONS of visitors yesterday.  The old lady next to me has four sons, all doctors, and they took it in turns to show up, present their credentials, and then act quite indignant about mom’s care.  The guy across from me is a pickup football player, and the entire team spent the day here yesterday hanging out flirting with the nurses..  I think that’s where some of my care slipped through the cracks.

In the late afternoon I started feeling some serious pain.  Suddenly very aware of everything they did to me on tuesday. Someone from the pain management team came and whacked up my dosage..  at the same time, one of the nurses noticed that my catheter wasn’t draining.  Somehow in the shuffle of getting out of bed to test my legs and getting back in, the line had been routed badly, and the bag had been placed too high.  So TONS of urine was building up in my bladder, and I think really contributing to the pain..

After a short nap, I noticed that the sump from my abdomen wasn’t draining..  One of the nurses came and turned up the suction, and it vigorously emptied out and then started making the noise it makes when you’ve reached the bottom of a milkshake with a straw..  I could feel air being sucked into my body and gurgling around and coming back out..  Very disconcerting.  The most troubling thing about the it all was that no one seemed to know how it was SUPPOSED to work.  At some point in here a nurse came to take my vitals, and realized that they hadn’t been taken since morning, and that I had a fever.  By 8:00 I was feeling as though the lunatics were running the asylum and had I been able to stand up and walk, I’d have left!  The final straw was when a nurse removed the suction from the drainage tube, and just taped a rubber glove on the end of it instead.

At this point I did something that I find very embarrassing.  I complained.  Vigorously.  It felt very foreign.  As a rule, I’m not a whiner.  But I raised hell. I was put in a situation where I suddenly felt no confidence in the care, and it was very scary.

in retrospect, I think the fact that i hadn’t slept at all the night before, and hadn’t eaten since sunday were probably contributing factors in my snap.

Last night went much better than the night before.  The nurses were much more aware of the lights, and the noise level.  I slept very well.  Woke up feeling fine.  Today has been a good day.  My main dressing was removed this morning, revealing an 8 inch strip of staples.  Crazy.  I got out of bed several times and went walking.  My right leg seems not to be connected to my abdomen in any way..  not sure whether it’s just numbness from the epidural, or a reaction to having my abdominal muscles sliced up.  I guess I’ll find out in time!  The second walk was much better than the first, though.

No definite word yet on moving to another room yet.  It keeps being mentioned, but not materializing.

day 1

I’ve been out of surgery for almost 24 hours now.  It went very well.  All the margins were clean, which means that the tumor has been completely removed.  Whether or not the cancer has spread remains to be determined.  I feel optimisitic, however.  The care I’m receiving is top notch.

They’ve made some pretty drastic adjustments to my body!  Pictures soon!  I’m currently attached to many tubes.  I’m catheterized..  There’s an 8 inch incision going straight past my belly button.  This is closed with staples.  no kidding.  There’s a sump pump inserted into my abdomen through this incision, to suck out any liquid that builds up.  An IV into my wrist dripping gatorade.  And a tube going into my spinal column delivering the good dope that’s keeping me pain free (and doing an amazing job!).

I was in and out for most of the afternoon yesterday.  But perked up at night and didn’t end up getting much sleep.  From around 12:30 to 4:30 I took a bunch of 30 second naps.  I’m in a room with 3 room-mates, and there’s a lot of action.  Constant checking of vitals, changing IVs, pulse-ox alarms going off to no avail, room-mates snoring, TVs blaring with no one watching etc..  They said something about moving me to a quieter room for tonight.  We’ll hope!

uf…  can’t keep my eyes open.  More in a little while.

still here!

hi.

thanks for the mojo.

an early start

Hill and I rode in to the surgeon’s office this morning to get the final marching orders.  Surgery is at 8am tomorrow.  We have to be at the hospital at 6.  I have to wake up and give myself an enema first.

“May I have just a little cup of espresso?”

“No.”

4:30 am wake up for an enema and no coffee?  I want my money back.

If all goes to schedule, I should be waking up from surgery around 1:00.  I’ll be intubated and catheterized.  The tube will come out of my throat as soon as I’m showing signs of life, and breathing on my own.  The catheter will stay in for some days.

The whole thing has happened so quickly.  Sort of hard to believe.  During the afternoon I’ve been doing a final clean out.. strange to know that it’s the last I’ll ever need to sit on a toilet!!  Think about that one for a minute!

Sort of at a loss for words, I’m afraid.  Please do your mojo for me tomorrow.

EDIT:

I’m up.  Pretty lousy sleep as was expected.  I was up running back and forth to the bathroom until a little after midnight.  Was just settling into a nice non-anxiety dream when the alarm went off.  Got up.  Made Hill some coffee, and here we are.  About to do my final preparations *coughs*.  Laptop and books are all packed up..  special blanket for the hospital that came in the mail from a friend..  Think I’m good to go.  More from the other side of this thing!

Sunday

I don’t mind admitting to you all that I’m afraid.

At lunch the other day I asked my doctor what we’d be looking at IF chemo was necessary.

“just like before, but without the avastin”

“6 months!!!??”

“Yes”

My heart broke.

The criteria are pretty simple.  They will remove TONS of lymph nodes while they’re taking out the bottom end of my colon.  If they find ANY involvement in the lymph nodes, I will have to do Chemo.  My surgeon said he though it was about a 50/50 chance.

I’m a reasonably tough guy, and I feel as though I’ve been a pretty good sport through all of this, but I don’t like those odds, and the idea of 6 months of that shit..  AGAIN..  puts me in a mild state of panic.  In the context of more chemotherapy, the surgery feels like a walk in the park.

If it IS necessary, I’ll get 4-6 weeks to recover from the surgery, and get used to shitting in a bag and then I’ll get another port, and off we’ll go.  It’s hard for me to find a nice light to shine on it.

I guess we’ll know in a few days.  It feels pretty crazy to be going into this surgery feeling more anxious about the news I’ll get when I wake up than I am about the radical changes they’re going to make to my body.  It’s a crazy world.

It’s on! (like donkey kong)

Yesterday evening, as the tornado was rolling through, my surgeon called.  I didn’t hear the phone.. (there was a tornado rolling through.. !), but he left a message.  Surgery will be on Tuesday.  He will confirm the exact time of day on Monday.  That suddenly seems very soon!  Immediately counting in my head the number of times I have left to poop on the pot like a big boy!  (whoa..  just occurred to me..  toilet training my kids will be pretty strange!)

I was feeling pretty crappy yesterday.  Hurting. Nauseous. Listless, etc.  Having the date set really made for a mental shift, though.  I somehow hadn’t been thinking about what’s coming up in really concrete terms.  Imagining the adjustment, yes..  Thinking about the time in the hospital, and how intensely boring that will be.  Dreading being catheterized (in the context of things, a strange thing to be anxious about!) What they’re getting ready to do is pretty crazy, though.  It bears noting.  I mean, moving the main waste line in a house would be no small task..  digging in to the walls and breaking into a gigantic black pipe stack, changing it’s course and taking it out the front to a new septic tank, instead of allowing it to go deep into the street and connect to the main city sewer line.  But it makes sense..  you can imagine that.  These guys are planning to do that to my BODY!!  WTF!  That’s nuts.  Who even figured out that it could be done!  It sounds like science fiction to me.  I wonder if there are any other general plumbing modifications that it would make sense to have them do while they’re in there!  I mean.. not to make light, but it seems crazy that you can think of the body as a bunch of systems that can be modified like that.

I’ll be speaking with the surgeon when he gets in to his office at 10.  Lunch at noon with my main doc.  I may have an update later on.

Thank you all for reading.  It continues to be a great source of comfort for us to know that you’re out there following along.