Yesterday afternoon I had the worst time I’ve had yet with chemo.

I went in as usual to get plugged in for my three day stint.  I showed the doc what was happening with my skin.  There was gleeful hand rubbing.

“what you have is probably about a 2 out of 5.. no 6!”

“I don’t find that comforting, doc.”

We elected to wait until tuesday (today) to do the erbitux, just to avoid a full six hours in the chair.  So what I had was identical to what I was getting every two weeks for those six months in 08/09.

As we were finishing up, and he was setting up the pump to send me home, I started to feel nauseous.  I decided to sit for a moment before leaving.  It finally overcame me and I went to the bathroom to puke.  Felt much better then, and decided that I should probably make a break for it and head home.

I went outside and flagged down a cab (those of you who know me know that this is already pretty grim).  I got in.

“122nd and Manhattan ave, please”

“Ok”

We were at a light.  There was a pause.  I looked around the cab..  looked out the window.

“Um.  I’m really sorry.  I’m going to vomit.  I think I’d better get out.”

“Ok”

I got out of the car and went to a trash can, and puked up something that I know I hadn’t eaten..  Foam and sickly yellow bile.  On the upper east side of NYC.  People walking by. “drunk..” they were thinking. “how embarrassing at 2:30 in the afternoon.”

This is when I made what, in retrospect, I realize was a really bad decision.  Once again, I felt as though puking had fixed me up a little.  I really wanted to get home.  So I decided to walk.  I was only a half block from my doctors office, but wanted to be home.  It’s only three miles.  And I knew that if I stated by walking across central park, I could take a cab, or the train, on the other side if I felt that the fresh air had fixed me up enough.

As I entered the park, I called Hill.  Realized that I was having a little trouble speaking.  Tried to tell her the situation, but just at the mention of puking I had to do some more, “I have to get off the phone..”

She called me back 5 minutes later.  Enough time for me to scare some more upper east siders.

“where are you.  I’m coming to find you.”

I told her were I was headed, and kept picking my way across the park.  I didn’t get too far.  I stopped on a bench for a while..  puked over the back of it, and then just settled into the grass where I thought I might be more comfortable.  I simply couldn’t move.  Every three minutes or so I would puke up more bile.  This seemed to be accompanied with intestinal spasms, and before long I was aware that my shit bag was filling up with what I had to guess was diarrhea.  I’m not sure that I’ve ever felt more powerless.  Where on earth was the steel will when I needed it!  I could feel my brain drifting back into my head taking a more and more dreamy observant roll.

By the time Hill found me, I was collapsed on the ground, exhausted.  I knew it would still be impossible to get in a cab.  At this point we were about a third of the way into the park and the only way to get back out was to walk.  The most pressing issue *cough* had become the fact that my shit bag was full to bursting with what I knew was going to be some pretty messy shit.

Hill called the office to see if we could come back and use the bathroom. After pointing out that he was aware that I was vomiting, and there was nothing he could do for it, he said that he was on his way out, but that Dianne was there and of course we could come back.   Hill helped me up and we started to walk.  Longest half mile ever.  I realized just how cold I had gotten from being under dressed on the cold damp ground.  The neuropathy in my hands and face had kicked in full force.  I was numb.  One numb hand in my vest pocket to stay warm.  The other down my pants to keep the shit bag from unclasping, or falling off.  Staggering down the street with HIll holding me up..  “Oh my.. some nice cyclist girl decided to help that drunk homeless man..  I wonder if she knows what she’s getting herself into?”  If they knew just what a profound question that was, they’d demand that she be canonized on the spot.

We got back to office.  Barely.  I had to run to the toilet and let loose.. first from the top.  Then emptied the bag.  It was full. Absolutely full.  I would have to guess that in its full state it holds a shade under a liter. I released the velcro clasp and the thing ruptured into the toilet..  mostly..  and before I could clean it up and re close the bag another volley passed right through it.  Up to a liter now, no question.

I went back to the chemo chair I’d been in all day and collapsed.  They covered me in blankets, but I was still shaking uncontrollably.  My temperature was 92.5.  That’s a little low.

I was still farther back in my brain at this point.  Aware of people speaking, but nearly unable to respond.  They were just a couple of feet away speaking about me in the third person.  I tried to drink some water.  It came back up.  It was pretty clear that I had become severely dehydrated.  The doc came back from his home.  They dripped me with lots of fluids and some anti-nausea, and some benedryl.  I dozed in and out, convulsing under the covers a little less and less.  An hour or so later, my body had calmed down.

My prize for all of this is that the doc disconnected the pump and sent me home without it for the night.

Hill’s brother, Tripp is in town, and he came into the office as well.  Accompanied me home in a cab while hill rode (she arrived as we put the key in the door).  I lay on the couch and ate crackers.  My folks came by.  Emily made a big pot of beautiful soup.  My mom rubbed my feet.  I felt better.  I slept well.

Now I need to stop writing and go back in for more.

Another dose of humility.

By evening time on tuesday, I could really feel my skin starting to react to the erbitux.  Strange that the first week it did almost nothing, but then snapped to with the dose on monday.  It has been getting progressively worse and more evident since.  The slight embarrassment at looking like a pimply teen aside, it is incredibly painful (much more so than it looks).  A feeling that mixes the best parts of deep seeded acne and wind/sunburn.  It occurs to me that this is the first side effect that has a really visible manifestation.  (um..  what about loosing all your hair and getting all freckly from the 5fu last time, Caldwell?  Oh yeah..  right.  but that wasn’t ugly.. or painful).  What I mean is that you can’t SEE nausea or chemo brain or headache or joint pain.  Last time I went through a 6 month stint of chemo people would say, “gosh.. but you look great!” and I could say, “thanks.. I’m hanging in there..”  Already this time it’s different.  People see me and ask how I’m doing, and I feel compelled to explain why I don’t look so good.. “the chemo’s really kicking the shit out of me.”

I don’t love it.  It will get much worse.

My energy level has been ok.  The monday top up only set me back for a day or so.  Wednesday I felt more or less energetic and I’ve been holding steady since then.  So the addition of the off week dose seems like it’ll shorten, but not do away with, my every other week window of feeling ok.

We had a great Thanksgiving.  In the end we were a motley crew of around 20 people.  I dry-brined the turkey this year, which is a misnomer, but it’s what I’ve been calling it anyway.  Brine, by definition, is wet.  True brining is also kind of messy and takes up a lot of room in your fridge since you need a container that can hold everything.  Instead I made a dry rub of salt and zizzed up herbs, covered the bird with it, and put it in the fridge in an oven bag for a few days.

Last year, some of you may remember, I dressed the turkey in a bacon sweater.  This year, when I stopped by the pig folks at the farmer’s market, they were already out of bacon, but had fat back for a dollar a pound.  NICE!  So this year the turkey got a down comforter!!

Perhaps not as cute as the sweater, but let me tell you, it did the trick!  It was without question the best bird I’ve made.  Super tender breast meat without the sogginess that can happen if you’re not careful with brine. After just 15 years or so of making thanksgiving dinner, I think I’ve landed on the way I like to do the bird.

My ass isn’t really hurting anymore.  Haven’t taken any pain meds in over a week. Maybe this is just a question of new and more insidious forms of discomfort masking it, but whatever!!  I’ll take it!  I can sit comfortably!

Yesterday’s erbitux top up went just fine.  No allergic reaction this time.  I had a pretty groggy rest of the day but didn’t feel too bad.  I’m feeling fine this morning, except for the fact that I haven’t slept through the night for 4 days.  Don’t know what’s going on.  I’ve woken up at 2 the last couple of days and not managed to get back to sleep.  I was blaming steroids that the doc had me on as a preventive measure against the allergic reaction.  My doc didn’t find this compelling.  Said it was in my head.  Hmm.  He also said that my particularly bad week last week had nothing to do with all the benadryl and double dose of erbitux.  He pointed out that I’ve been through a lot..  um.  yeah.  I guess.

I asked if he was encouraged that I hadn’t broken out in a rash yet.

“No.  I’m not.  If you don’t have some sort of reaction SOMEWHERE, I’ll be disappointed.”

His general reaction to the side effects is a gleeful rubbing of the hands..   “it’s woooooorkiiiingg”

“Doc.  I feel like hell.”

“Great!”

I’m feeling a little better.

It was a pretty tough week.  I don’t really remember this stuff beating me up quite so badly, though maybe all I have to do is look back at some blog entries from a couple years ago!

I have not puked.  Acne has not started.  My hair hasn’t started falling out in clumps.

I do have slightly tingly fingers already.. something that didn’t start until round 2 of the oxaliplatin last time.

I have had a few nose bleeds.. something that we had been blaming the avastin for last time, but I’m not on that stuff this time around!  YAY!!  More nose bleed photos!

I have DEFINITELY been experiencing chemo brain in a big way.  Total inability to focus.  I feel as though there are some things that took a while to develop the last time, that are cropping RIGHT back up this time around.  Maybe just because they know how!  It’s as though the body says, “oh yeah.. this stuff..  I remember how to react to this stuff!”

Thursday was pretty bad.  I stayed in bed for most of the day.  I watched Efren Reyes play one pocket (that’s pool.. an old man’s game, that I love..  and that is like watching paint dry for those who don’t know what they’re looking at!) against Shannon Daulton, for over 2 and a half hours.  I manged finally to get out of bed at around 3:30 to make some pork chile verde for Glen H, Samamidon, and brother Doveman who all came to dinner, strangely all overlapping in town at the same time for just one night.  The chile verde was really good.  It was a second stab at a method I dreamed up a couple of weeks ago.  I will share it here next time I have the mind to.

On friday, I felt a little bit better, but still basically flat.  I’ve had a frustrating level of headache and borderline nausea that makes it really difficult to nap.  Or to sleep well, really.  I was up at 4 this morning, but waited patiently in bed until 5:30 before getting up to make coffee and answer emails.  (maybe not THAT patiently.  I tried some really creative snuggling with Hill to see if it would make me tired.  I couldn’t find Putney in the covers.  After a while Hill said, “baby.. maybe you should put your headphones on and watch something on netflix.  Or read..”).  Our wonderful housemate Emmy Oz had friends over to make apple pie in the evening and I thought it fitting to make them Pizza pie as a snack (one with potato/pesto/feta..   and another with prosciutto and ribbons of delicata squash and sundried tomatoes..  sounds really haute, but was actually just yummy).

One moment.  Hill’s alarm just went off.  I’ll make her some coffee and come back.

Saturday, yesterday, I left the house!  Twice!  Hill and I went down town and did some errands together, until I was pretty much done with walking around.  Came home to rest for a while.  Then after a quick dinner (pasta with pumpkin and anchovies..  parsley, browned onions, bread crumbs and parmesan) we went out again to hear Sam’s show at the Kitchen.  He was wonderful.  At the end when I said, “baby!  let’s make a break for it!” Hill assumed that I was being my normal socially impatient self, eager to avoid the after concert chit chat and etc..  We haven’t yet come up with a short hand for Shit Bag emergencies.  Perhaps, “baby.  I really need to GO now..”  with wide eyes.  Wasn’t sure I’d make it home.  I did.

That’s it.  Up to date.  Today I’ll try and get a few things done around the house.  Move some bike crates (with help, of course.. still not allowed to lift!!  GAH!!) from the bike room to the shop, to make a little room for thanks giving.

Tomorrow I’ll go in for a top up of erbitux.  Hoping that the allergic reaction was a one time deal.  Hoping also that the stuff on its own and at normal dose isn’t so bad.  Hoping that the associated leprosy continues to stay away.

Monday was pretty rough.  I did manage to eat when I got home.  It did stay down.

I had intense body aches, though.  Upper spine, sternum, elbows, wrists, shoulders.  I got very little sleep.

Tuesday was a little scary.  My doc wanted to wait until tuesday to start the erbitux, because the first dose is twice the size, and comes with lots of pre-medications.  About two minutes into it something strange started to happen.  I felt a swelling tingle in my chest and arms and neck and finally face.  I started having trouble breathing.  “Um doc.  Something’s not right.”  It got pretty hard to talk after that.  He stopped the erbitux and filled me up with benadryl.  The reaction slowly subsided and he was able to finish the dose.  He says that it can happen the first time, and usually not again.  We’ll see next monday, I guess!

Today was wednesday.  I went in, and got unplugged.  Done with the first round, but not feeling any better than I have for the last two evenings.  A bit worse, in fact.  I’ve got lingering nausea and general exhaustion.  I got home from the office and made it as far as the couch.  Spent about 4 hours there.  uhg.  Here we go again.

Tomorrow should be better!

Now, I think I’ll bathe and get in bed.

After getting the port in on wednesday, I was looking forward to four days off with no appointments of any sort.  It has gone by pretty quickly, and I’m feeling as though I REALLY haven’t taken advantage of the time.  I went out to the shop for a while yesterday, with the best intentions, and ended up just staring blankly at tools.  I’m almost relieved to be starting the chemo tomorrow, just so that I can stop ANTICIPATING it.  It’s my hope that when I start, I can just get into the rhythm of doing the stuff.  Of getting it done.  That I’ll get familiar again with just what I’m dealing with, and I’ll be able to roll with it.  The last few weeks have just been full of a sort of crippling dread of what’s to come.  Once it HAS come, maybe I won’t dread it any more.  That’s what I’m hoping.

I remember from last time that getting unplugged on day 3 was like the last day of school.  You wake up and know that you only have to make it through that day and then it’s summer vacation.  So here’s to wednesday.  Looking forward to wednesday.

My new port went in this morning.  Oh well.

I got up at 6:30, put on an acceptable hospital outfit, and walked down to Mt. Sinai.  They’re getting pretty used to me down there.  Maybe I can get some sort of customer reward card.

The surgeon did the procedure without any sedative.. just local.  Yikes.  My face was tented so that I couldn’t watch, but he had an anesthesiology resident scrubbed in with him, and was describing what he was doing with enough detail that I didn’t really NEED to be able to see.  I’ve got a decent imagination.

“So, there you can see the pectoralis, and here, the deltoid..  you follow this line between them seperating the.. “  Etc..     “Nurse, may I have a rake?”  A RAKE!??  What on earth are you planning to do with a rake?

It’s on the left side this time.  And this time he went into the subclavian vein, instead of the jugular, which I’m guessing will mean that you won’t be able to see the tube running under the skin the way you could on my last one.

The course of treatment has been settled on, and I’ll start on monday.  To say that I’m not looking forward to it would be a little coy.  I am dreading it.  I’ve done it before, so I know what I’m getting into, and that’s just the problem!  This time there will also be the addition of a drug that will make me break out with acne.  I had terrible acne as a teen, and I really hated it..  It was such a blow to confidence!  I hope I’m able to handle it a little better as an adult.  This acne drug also has to be dripped every week, instead of every two..  so it’s going to make the schedule just a little more grueling.

Seth and Eunice recently sent me some really nice polenta after Eunice posted some particularly nice looking cornbread on flickr and I said “nom nom.”  It inspired this meal last night.  We’ve been buying some beautiful duck from the farmer’s market recently.  Really hard to beat.  There is SO much amazing fat on the breasts, that if you render it out you can use it for all sorts of things..  In this case, for frying up the parsnips!  wow.

I cooked up the polenta with some chicken stock, then poured it out onto the counter, and spread it nice and thin.  Once it cooled, I cut it into fingers, lightly coated it with oil, and put it in a hot oven (450 or so) until the fingers were nicely browned.  So good.  This polenta they sent was just amazing.  Dried corn that still tastes like CORN!

But here’s the thing I want to talk about:  Escarole.  When I eat escarole, I’m with the one I love.

For a while now I’ve been wandering around in the produce section just knowing that there’s some vegetable that’s been missing.  It’s escarole!  It’s not that I hadn’t had the stuff before..  but I have recently fallen in love.  We have it about every other night lately, and I’ve come up with a great simple way to make it.

Thinly slice some garlic and slowly brown it in plenty of olive oil.  Empty out the pan through a strainer into a bowl or something and set aside the garlic.  Now you’ve got beautiful garlic oil AND nice garlic chips to garnish.

Get a flashy pan nice and hot, add the garlic oil, and just before it starts smoking like mad, throw in the escarole (washed and chopped with the wash water still clinging to it..).  Keep the escarole moving until the pan cools down a little, then cover it for 30 seconds or so to steam.  Check on it.  Don’t over cook it.  Salt and pepper..  don’t fuck it up.  Turn the pan out into a bowl and top with the garlic chips.  Too many beautiful.  (oh oh!!  and lately it’s been $0.49 per lb at our local super market!!).

Ok.

I got home yesterday from a third opinion appointment that just served to confuse things a little more and  found a big wooden crate waiting for me.  The ASSLESS is back!  I built it up post haste.  I know that there will be those out there that miss the matte black rattle can job, and think that I’m messing with an icon to change anything!!   Those maybe who feel that this new approach is a little too flashy.. maybe even a little too literal! (“Come on, Ezra..  an angry red ass on the assless!!???”).  To you, I say.. get over it.  I’m the one who has to ride the bloody torture machine, and I felt that it was time for a change.  So I present to you the Assless Mark II.

I had such a nice time putting it back together. It was the first I’d done anything with my hands in almost 2 months!  It made me really miss it all.  Riding it feels fine.  Just as tiring as I remember it!  I took a nice flat ride over to Modsquad cycles to pick up some new grips for it this morning, just to test things out (and by “things,” I mean the anatomical adjustments to my whatsis.. ) and when that seemed fine, I made the climb up the big hill to Grant’s Tomb to take a few pictures.  I’m guessing I’ll feel it later, but maybe not. I will not always need to ride this thing.  Just for the time being while the perineal incision heals.  The docs haven’t exactly cleared me to ride it..  but I figure, what they don’t know can’t hurt me.

This weekend I’m in the throws of trying to come to terms with these second and third opinions that I got over the last few days.  The good news is that both docs felt that it wasn’t unreasonable to expect that this could be a cure!  That I could go through the 6 months of chemo and then be done.. never have to deal with it again.  This is a FAR more optimistic outlook than we had been allowing ourselves to have!  They both agreed that I needed to do the chemo (BLAST!!  was hoping that one would say, “ah shit..  don’t bother.. I’m guessing you’re cured NOW!!  Get back to work.. go build some bikes.”  No. wait.  What I was actually hoping for was that they’d come back from going over my films and say, “Um.. daniel.  We’ve got some great news!  Uh..   there was a bit of a mix up with the pathology reports..  These weren’t yours, in fact.  There’s nothing wrong with YOU.  This other guys is in pretty serious trouble, however..  Oh.  And we’re SUPER sorry about that colostomy!” at which point we could discuss the exact figures of the settlement).  What they’re disagreeing on is what drugs to use.  I won’t go into the details.  It boils down to using a drug that I’ve had before, which obviously didn’t work, or using a different drug which has a much lower success rate.  Use the really big gun that didn’t work last time and hope that it works this time, or use the pea shooter, just in case my cancer is really defenseless against pea shooters.  Hard choice.

Yesterday was somehow filled by back to back appointments with my oncologist and the surgeon.  Always amazing to me how two quick appointments can fill up the day.  I think the three hour nap I took when I got home helped!  It was the sleep of intense relief.

I didn’t really realize until getting the pet scan, and waiting through the weekend for the results, just how anxious I was about it.  It has been the assumption all along that the cancer had not taken hold elsewhere, and yet we had no hard evidence that this was the case.  I spent the weekend feeling pretty gloomy, and imagining what it would mean if they found tumors in the liver.. in the lungs.  So a clean scan, despite the fact that it was precisely what we were expecting, was an intense relief.  (“yipeeee….  it’s still stage IIIc not stage IV!!!”)

It doesn’t, however, mean much of anything about course of treatment.  I will still be receiving 6 months of chemotherapy.  This will include a drug called Erbitux (I just made the mistake of looking up images of the side effects.  Yikes!) It will also include Oxaliplatin, the drug responsible for the numb hands and eventually feet that I experienced last time around.  It is definitely feeling harder this time to march into 6 months of chemo, KNOWING what it does.  Last time I was able to take a real, “hey.. how bad can it be?” approach.

Knowing what’s coming, we’re being a little more proactive this time about finding ways to diminish the side effects, most especially the nausea.  Unfortunately, there’s no way of knowing if any of it works until you’re in the middle of it!

Today is my own.  I have no appointments scheduled.  I will spend it at the pool hall.  On thursday and friday, we will be getting second and third opinions that will most likely confirm the need for the chemo, and reassure us that we’re on the right course.  Early next week I will probably have the port placed, though it isn’t scheduled yet.  Chemo will start on the 15th.  One of the things that I’ve hated most about being sick over these years has been the loss of control.. the feeling that your time stops being your own.  To some degree it will be a relief to get into the rhythm of chemotherapy.  To know that the first three days of every two weeks will suck, and that I’ll be attached to a pump, but that after that I’ll be left alone for 10 days to recover.

Tomorrow byram healthcare supplies will be shipping out my next order of bags.  This time opaque!!!  Also, from a different company that makes products geared towards a more active lifestyle.. lower profile and more flexible.  I think this will be a real improvement.  I’ll keep you posted.  Given the side effects of some of the drugs I’ll be on, I don’t think that the sort of bowel regularity necessary for the irrigation approach be expected until after treatment ends.  In the mean time, I’ll be trying to find the least offensive products possible!

The Assless should be back in my hands on friday!  Sweet!

That’s it.