What are chemo "down days" like?

People always want to know the nasty details and I've been sparing of them. But, now I'll 'fess up.

It feels just like you've been poisoned, I guess. Starting on Friday and lasting about 5 days I feel very weak and shaky. My eyeballs seem to jump around and when I close my eyes they are still jumping around. If I do much work (typing, collecting dog poop from the frozen backyard) I just feel like sitting down for a while. My mind doesn't seem to work too well and doesn't want to do anything very difficult. I find myself thinking "Oh well, I'll deal with that later. I'll fix that later. I'll find that later."

On Saturday, which is the worst day if the chemo was on Wednesday (which seems to be my schedule for the last 3), I wake up around the usual time, about 7:30am, after having woken up about 7 times in the night to go to the bathroom. (They encourage you to drink as much water as possible to help flush out the chemo drugs as fast as possible.) I get up, go to the bathroom once again and wander into the kitchen. Drink more water because my mouth tastes like old metal and I'm thirsty and my stomach hurts. Think about eating. Not very interested but I eat a bit of bagel to get some carb in my stomach to help the acid and hurt.

Go back to bed because I can't think of anything I have the interest or strength to do and the girls aren't up yet anyway (you remember teenagers and weekends...).

Wake up again about 10:30am. The girls are now up so I get up and we have breakfast. I can eat; I don't have any nausea. The food doesn't taste good particularly, but eating makes my stomach feel better. We hang out about an hour -- once they go upstairs to do whatever they do up there (probably go online or play a video game or read), I go back to bed again. Basically my whole day is sleeping, getting up to pee, and the occasional hour awake. I go back to bed for "the night" about 8pm. It's difficult to sleep because of all the sleep I've gotten and all the peeing. But I still sleep most of the night.

The Friday before and the Sunday, Monday & Tues after are not quite as bad. Still feel weak and some shaky, stomach still hurts. My mouth still tastes like old metal. But I can do the things I need to do -- go to work and type, think, decide. Drive the girls around. Warm up food and eat with the girls. But I go to bed early and usually take an afternoon nap.

There. Not as bad as I thought it might be. Probably not as bad as you feared. My friend who has done chemo and I call it "feeling puny." Not really terrible, just unable to DO anything.

I have wondered whether having my worst day be Saturday is "real" or if it is the day that is convenient to "take a day off." Some people have other days that are worst, between 1 and 5 days after chemo. I do think it helps to have "scheduled" this time for myself, when I don't plan to do anything, or go anywhere and can just sleep, watch TV, read, etc. Maybe I'll continue to schedule these down days every 3 weeks, even after I stop chemo! I suppose, in some ways, we all do that, whether we are conscious of it or not.

OK - the bald pictures! View at your own risk!

And don't let my daughter see!

Jean Luc Piccard anyone? (Mom, that's from some newer StarTrek that I don't think I ever watched a whole episode of.)

I think it really emphasizes my new wrinkles. Well, they were there forming before, but I do think the last 3 months have accentuated them.

You can see the port scars, there's the longer one right above the actual port and the smaller one up and to the left. You can't really see the port itself. Well, a bit in the first picture, right under the bigger scar you can see it is a bit raised. There are 3 little nubs underneath the skin, so the nurse knows right where to poke. It is about an inch in diameter, I guess.

In case you've been wondering, I did have my daughter take some of the earlier ones, but it's difficult to catch her when I'm ready. So, then I started taking them myself with a mirror in front of me so I can look in the viewfinder. I feel pretty proud! Also finally got L. to show me how to upload the picture myself, since she never seems to get around to it. Maybe I'll even get those videos posted from the girls play and award ceremony that I promised last year!

More hats

I guess I can only get 6 to a page. I have four more to go.

I'm never sure where these are going to show up on the page, or where the text is going to go.

Right is my black hat over a pink sleep cap. The black hat doesn't show up too well. I even tried to lighten it up some.

Left is my llama hat, a gift from a friend who said it didn't look good on her. I think its cute as can be and I gather from looking at young things that black, cream and brown are quite in fashion. Not that I would know.

Looking silly so you can see my poinsietta pin for Christmas -- its not a red palm tree! (And that's a snowman on my shirt.)

Me looking a bit classic with a black hat over the white sleep hat.

MaryAnne With Hats (may take a long time to load?)

I have been told that I have a good head for hats. And lately I've been told that I am really "stylin'" !! I am not angry in this picture, really, but trying to let you see the side of the hat, which has a funky tie in the blue scarf. The light blue underneath is one of my sleep hats.

This is a rather strange kerchief-type hat that a friend gave me. Luckily, it perfectly matches this shirt!
This and the next are my favorite - my "bucket hat." That's what the website called it that sold it. Very simple, matches my jeans, works with scarves, sleep hats underneath, no hat underneath, with pins, by itself, etc.
Showing off my very Accot bow in back.
A hat given to me by a friend, but not a real cancer hat. It's not big enough, really. It is a pin-stripe fedora, although it doesn't show off too well in this picture, even after I lightened it.
I look very -- what? Like a 1940s matron or something. This is my wool cloche hat with big scarf as band.

3rd Chemo Down, only 1 left!

3rd treatment was yesterday (Jan 20), which means I had that nasty shot today. I am feeling tired and noticing the bones a bit more than last time. Last time I shelled out the big bucks for real Clariton, but this time I got the generic. Oh well. Some Exedrin PM should take care of me tonight I hope. So far I don't think this one is worse, although many people told me to expect it and round 4 to be worse than the first 2 were. Of course, this is only the 2nd day, pretty early in my chemo reaction cycle.

I expect to be pretty tired and out of it for a few days til about Sunday, and then mostly normal but stomach problems, until about Wednesday the 27th. It's only about a week of any complaint, then I'm pretty much back to normal.

It's amazing to me that I'm already this far along! Seems like I'm always complaining that time speeds by, but sometimes it's a good thing!

By the way, I am going to put up some pictures of me in some of my hats and scarves, just so folks can see me! But then, on its own blog post, I am going to put up the pictures of my bald head and you can see my chest port too. (Nothing risque.) I'm warning you now, so that you can avoid those pictures of my bald head if you want to. I know it upsets some people, like my daughter, who still hasn't seen me without me at least wearing my little sleep caps.

2nd Chemo was Dec 30 -- Not as bad as last time

I went in for an afternoon appt this time and boy was it crowded! They were closing early Dec 31 and closed Jan 1, so they had to get us all scheduled and through our treatments before that. I got there about 1:30 and was ready to get a chair by 2:30. (They first have to draw blood and make sure you are "well enough" for them to try to kill you again.)

Well, there was no room at the Inn! The nurse suggested I go get my next appts set up and make myself a cup of tea and then probably something would be freed up. So, I finally got a seat about 3pm and got out of there after 6pm. It went very smoothly with my new port. The needle going in isn't any nicer than an IV poke, but at least you don't have to worry about whether they are going to find your vein.

The last time, I found the Neulasta shot was the worst of it. That's the one that boosts your white blood cells so you don't get so sick from the chemo. That was the one that made my shins and knees ache so bad it woke me up at night. This time I took a Claritin the day before the shot and the morning of the shot and it really hasn't bothered me as much. And the incontinence isn't so bad either, or maybe I'm just prepared with my Poise pads this time.

Anyway, this time on Day 2 I feel fine -- no need for a nap. Had a lot of visitors today and ended up driving 4 hours up to Glenwood Springs for no reason (the "Look Good, Feel Better" class was of course NOT scheduled for New Year's Day but for next Friday!). But it was a lovely drive -- very pretty in the canyons this time of year -- and enjoyed Tom Waits CDs (a very acquired taste - don't rush out and buy any TW CD's without listening to them first).

Each time will be different I hear, and probably will get worse, but for now I feel lucky and blessed to have had such a lovely holiday time, and still have several days left of it!

Happy New Year to All! I'm definitely hoping for a better one than this year!