yesterday (graphic.. if you have a heart condition be warned)

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.

as promised

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.

incidentaly

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!”

emerging from fog

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.

wednesday

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.

tomorrow is the day

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.