Month: December 2010

I hiked across the park to the doc’s office yesterday to start this round of treatment.  The snow has slowly started to be pushed to the sides, and there are places to walk.  The middle of the street still works best, but the cars have started to come back.  It has been sort of amazing and beautiful to see the city brought to a halt.  Jackasses trying to get out in their cars only to have to abandon them in the middle of the street a half block away because they’ve been spinning their tires the whole way, and they’re bald now..  Making that particular street impassible for the snow plow.  People are complaining about how slow the snow removal has been, but are conveniently forgetting that when election time rolls around they refuse to vote for someone who says, “naturally to pay for all the services you have come to expect, we will have to raise your taxes.”  “Oh HELL no!  I’ll take my chances”  (there’s that soap box again..  sorry.  By now I’m sure many of you know where I stand).

Doc took a look at my mouth and thought for a minute.

“It’s herpes.”

“What!??”

“well..  A type of herpes.”

“Ok.”

Then he looked at my tongue and thought for another moment..

“Nope.  It’s the 5fu.  for sure.”  (hands rubbing with glee…  “eeeeexcelent.. it’s woooorking”)

“If I give you treatment today, I will have to cut the f5u to SUCH a degree that it may be worth just waiting until next week to start you up again.  Would that be ok?  Otherwise this will just get worse.”

“Sounds good to me, doc.  You’ll never get an argument from me for putting off the poison.”

“So I’ll just give you erbitux today.”

The Erbitux continues to give me mange (thanks antoine, I think mange is even more apt than leprosy).  The picture up top is from a few days ago..  I’m up early and there’s not enough light yet to take one for today, but you can take my word for it.. I don’t look great.

Naturally I will spend some of my free time playing pool with Jeremiah, who is quickly becoming a close friend.  I’ll also probably try to put up a few new pictures on Etsy. (my continued gratitude to those of you who have stopped in.  It’s actually drawing a bit of an income, which really helps take at least some of the mental pressure off the situation.  To be able to still contribute, beyond just cooking dinner, is a real comfort. It has also been a chance to really look at some of the photos, and to see them in PRINT, which is really so different from seeing them on screen.)

Hill is a little anxious about the schedule change.  She had planned a trip down to NC to see family and friends for NEXT week when I’d be OFF.  Makes her a little nervous to leave me during a treatment week, even though we have so many other folks around who can help out.  Naturally, I will be fine.

I have been receiving some really beautiful emails from many of you.  Some who knew me before and have discovered this blog and done some catching up.  Others that I’ve never met.  It is beautiful, and humbling, and very fortifying!  I’m grateful.  I’m sorry to those that slip through the cracks and don’t get a quick response.  Please know that I read it all and am grateful.  Thank you.

That’s all.

WEEEEEEE!  I won’t start chemo ’til tomorrow.  The northeast is buried in snow, so I get a one day reprieve.  I called my doc last night and suggested that maybe we delay a day, if that made no difference to him.  He said, “it makes no difference at all..   in fact, I think it would be prudent.”  I think he was probably imagining me taking one of my walks through the park to get home and decided he couldn’t be responsible for me being found in a snow bank somewhere.

The snow started yesterday morning, and went right through the night.  We’ve definitely had worse here in the city, but this one is pretty good.  All airports closed.  Very little public transportation.. etc.  A car goes by every five minutes or so, but mostly the street is for pedestrians today.  One of my favorite sights!  Watching people walk right down the middle of the street on their way to the subway.

I’m feeling a little frustrated by my physical state.  Not allowed to shovel snow.  Not allowed to throw studded tires on the getter and go get in trouble..  We DID however take the dogs to the park and let them get their ya yas out.

We had a nice xmas.  Family, friends from vt and nyc, and a rather lean goose(?).  I’ve encountered a new side effect, though.  I’ve got canker sores inside my mouth that simple won’t go away.  SUPER painful.  I’m mostly fine as long as I don’t eat or talk.  A good thing that I don’t like either activity very much.  Hrumph..  It has put a bit of a damper on the last handful of days.  Amazing how such a small thing can change your mood so drastically.  I’d honestly rather be a little nauseous. HEY!  By tomorrow afternoon I’ll get BOTH!

It’s happened.  After greasing up my face last night to help with the erbitux rash, I ran the extra through my hair to do a little hair sculpture!  It was the perfect length.  I got a real bobo the clown look going.  But then noticed that my hands had come away furry.  Oh damn.  I grabbed a chunk and pulled.  Out it came.  This morning when I tested it, it gave even less resistance.  Oh well.  So I took it off.  No sense in waiting for it to become a nuisance..  hair on the pillow, etc.

Besides.  I really LIKE being bald.  I think it feels great.  When I’m not on chemo, my hair is so bloody thick that I really don’t have much excuse to take it off..  I mean, if it were thinning, I’d say ‘to hell with it’ and shave it off..  But it’s NOT.  At ALL.  It’s like a make up brush!  So for me, this is really one of the big upsides to getting chemo.  I get to be bald for a while.  Love it.

Over the weekend, I managed to turn 37 without incident. Not that this was unexpected, but these landmarks take on some significance when you’re not well! Hurrah.

The week that was SO easy compared to the others really caught up with me in the end. I’ve been feeling pretty crappy over the last few days. Unfortunately those days have coincided with birthday and early family xmas. My sister has been in town for a few days and we decided to celebrate xmas early, with breakfast on Sunday, followed immediately by a joint bday party for me and special Ed in the evening. I made cochinita pibil for twenty, though I think we ended up being 14 or so and there are some leftovers!

The erbitux has started to do new and colorful things. Wow. It seems as though each round it picks a new part of my face to ravish and then moves on. First it was around the nose, then across the cheeks, then my eyelids got super dry and chapped feeling, and now this!!?? The good news is that once it does some real damage to an area, that area seems to be much less affected down the road.  Almost as though the skin gets vaccinated by the experience. Maybe soon it’ll move on to parts of my body that are more typically covered up! That would be a nice change. I got my usual monday top up today (followed by a 4 hour benadryl nap), so we’ll find out soon enough!

Thanks very much to all of you who bought prints on Etsy. Too kind!

It’s wednesday just like that. Headed in to get unplugged. This round was a breeze. Don’t know what to say. Monday I came home without incident.. slept for 5 hours. Got up and made dinner, and went straight back to bed.

Yesterday was a snap. Came home and played with making videos from rapid fire stills (see above.. this one from this morning).
Took a long hot bath. Cooked dinner. Went to bed.

Now it’s wednesday morning and I’m off to get unplugged. Thinking I’ll take my cue with me just in case I feel moved to travel on from the doc’s office to the pool hall.. could happen. I think last time I was going through this BS, I managed to play some handball on an unplug day. (it was the one time that bucky ever beat me!! though she refuses to count it as a victory. HA! stubborn). So I figure a little pool might be possible seeing how well this round has gone.

So what was different? Beats the hell out of me. We’ll just try to repeat the same mojo next round. The erbitux seems not to be doing as much to me.. Though I won’t know for sure until this evening or tomorrow morning. I’m thinking good thoughts.

X-mas is coming. I’ve been hesitant to really plug it here, at the risk of mixing the blog with commerce, but I DID start an Etsy shop a while ago with some photographic prints for sale. No books yet, I’m afraid, but a few pictures. I print them all here at the house on very nice paper with very nice ink. If you’re at a loss for x-mas presents, maybe this is the answer! (there’s a link over on the sidebar to the right). If there are particular photos that you’d like in print from my flickr pages, please feel free to make a request. I may not agree!! ha. I’m trying only to print things that I think make particularly nice PRINTS. Some stuff looks much better on the interweb than it does in print and vice versa. I hope this plug doesn’t feel dirty to all of you good readers.

The last couple of days have been great. I’ve been feeling well. Also somehow managed to play a cumulative 10 hours of straight pool with my new friend Jeremiah.

After my visit to the doc on monday for a top up of erbitux, he told me that my skin was bad enough to warrant a couple of days worth of tetracycline (antibiotic), which does seem to have helped the situation a little.  I’m getting used to looking like a teenager (albeit a sort of furry one), and it’s not hurting nearly as badly.  The only drawback with the tetracycline is that it’s an immunosuppressant. So as the chemo drugs do their work and build up in my system, knocking down my white cell count and etc, it will not be possible to take the stuff like candy.

Two more lovely days before I head back in for more.  Three more dinners!  Tonight will be tacos.   Steak AND fish (in separate tacos mind you!  I just didn’t have enough left over hanger steak to marinate for the number of people eating.. soo  surf and turf taco platter!  ha!) .  MMM.  Haven’t decided about tomorrow yet, though we HAVE decided that tomorrow evening we’ll go pick up a x-mas tree.

That’s all.

Oh.  This is my new friend Jeremiah.  He’s a super classy guy, and a pretty good pool player!