THIS IS NOT MY BEAUTIFUL WIFE!

I’ve had the Talking Head’s “Once in A Lifetime” lyrics running through my head lately. (on the rare occasions that I can get the freakishly insidious kids song “Pig On Her Head” out of my brain). As is typical of me and 80s songs, I didn’t remember the lyrics quite right (I thought the AC/DC song “Dirty Deeds Done Dirt Cheap” was actually saying something about a Thunder Chief until I was 32), but I remembered the “You may ask yourself—how did I get here?” part (thisisnotmybeautifulhouse, thisisnotmybeautifulwife) because sometimes I don’t want to be this person. I had a dream the other night that (I was high school age) I was bopping around doing whatever it is 16 year olds do, wearing this backless sundress, and I could actually feel my hair tickling down to the middle of my back (as it did, before). I woke up all groggy and kinda still in that 16 year old mentality until I went into the bathroom, got a glimpse of my stubbly head in the mirror-- WHAM back to my reality. Sometimes it just hits me like that, and my main (notsobrave notsostrong) thought it I just don’t want to be me, dealing with this. Believe me I know I don’t have a choice, and honestly, I’m happy with myself for doing the best I possibly can, considering-- but I guess that’s why the song is in my head. Funny thing is, when I actually looked at the lyrics, they were comforting somehow…

And you may ask yourself-well...how did I get here?

And you may ask yourself

How do I work this?

And you may tell yourself

This is not my beautiful house!

And you may tell yourself

This is not my beautiful wife!

Letting the days go by/let the water hold me down

Letting the days go by/water flowing underground

Into the blue again/after the money’s gone

Once in a lifetime/water flowing underground.

Same as it ever was...same as it ever was...same as it ever was...

Letting the days go by/let the water hold me down

Letting the days go by/water flowing underground

Into the blue again/in the silent water

Under the rocks and stones/there is water underground.

I had forgotten about the water part. Makes me happy. (I guess I did keep at least part of that dream-16-year-old mentality because I’m finding a lot of hidden meaning in song lyrics.)
Alexander really does think it’s cool that I have removable hair-- so much though, that he likes to tell me to “take off your hair mommy!” when we’re talking to pretty much anyone, including his teacher yesterday. After I told him “maybe later,” she asked him if he could take off his hair, to which he replied: “No, mines stuck. But when I’m big, I’m gonna have boobs, and I’m gonna take off my hair.”
Leave it to a 3 year old to remind me (again) about how great I have it.
Guess it truly is good to be me. (sameasiteverwas…)

A DAY IN THE LIFE

Yesterday was a big day. Alexander had "snack day" and his 3rd bday party at school, and we all (me, jim, liam and alexander) went to my sister's friend's hair salon, Hair People, to get haircuts. My hair was yearning to be free, and grossing me out so I figured we might as well make it a family affair, since Jim and Alexander both needed haircuts and Liam looked like a hobbit since I wouldn't ever let anyone cut his hair. So now I look like a cross between GI Jane and a radiation victim, but as Lisa says, my wig is "way nicer than your hair ever looked-- styled, I mean." (ahh, sisters). Liam got the wiggles and only got part way through his haircut, but I think we both can live with it. The whole hair thing is kindof insult to injury. Chemo: feel crappy, look bad too. At least I got partial lack-of-vanity training for this in college, when I had to wear a Navy uniform once a week-- nothing like looking like a life-sized brown turd on a campus of J. Crew models.... but oh, the character I'm building. And xander is way impressed that he has a mom who can take her hair off (and he was pretty mad he couldn't shave his head too.)
My day in pictures:

my wall of happy thoughts

hair break for freedom

trying to sort out doctor receipts for the flex account

cupcakes for xander's party. He snuck one!

the perfectly shaped head?

post-hobbit liam

LOVED ONES RECALL LOCAL MAN'S COWARDLY BATTLE WITH CANCER

This is a headline from the Onion "Dispatches From the Tenth Circle" book I received several years ago. (Other headlines include "Tenth Circle Added To Rapidly Growing Hell"). I typically think the Onion is hilarious, but this headline has always stuck with me and I've been thinking about it a lot lately.
Who is considered cowardly when battling cancer? Why is it a battle? If I don't "win" is it because I haven't fought hard enough? Can I do anything to fight harder? Why would I possibly want to pump more toxic chemicals into my body just because I don't feel bad enough? (oh, but I would). Yesterday my oncologist told me I was a "Poster Child for Chemo" because I've dealt so well with it so far. Am I supposed to be proud of this? (why am I?) Like people who get miserable sick are somehow worse people than I am somehow? Don't get me wrong, I'm thrilled that things have gone so well so far, but what happens when I do start to feel miserable (which I might) and my hair finally does fall out (which it is starting to) --does that mean I've done something wrong? Like I just didn't have a good enough attitude, or wasn't (*gasp*) getting in enough happy thoughts sent my way?
I've latched onto this Brave and Strong thing because I thought it would help me deal. And it has. I do truly believe that a positive attitude makes a big difference, at least to me. But I'm torn. Part of me wants to be cheery and optimistic and put up a brave face and be strong and witty and all that good stuff. Sometimes I feel like if I'm not then I'm letting everyone down... especially myself and my family. But even when I am upbeat I feel kinda guilty that I'm letting the cancer community down somehow... like playing into the potentially destructive "survival worship" embodied by the whole Lance Armstrong thing. Like it's important I explain that it just really does suck and is miserable sometimes. (And I have it good.)
I used to wear a "LiveStrong" bracelet in support of my friend, who's way more than I brave and strong father had pancreatic cancer. I stopped wearing it for some stupid reason (I think because alexander kept wanting to chew on it). I still have it, but won't wear it now. Because I would feel like a hypocrite. What's that about? It's like I can't (don't want to) identify with the whole cancer community because that would be acknowledging that in some way I am in this life and death fight (there's that battle thing again) that I truly want no part of--and, as my sister would say, don't even have time for? (like anyone has time for this crap).
Really, what I am supposed to say to those well-meaning people who see me in the hall, and, as they realize who they're looking at, stop walking and their faces shift somehow... they inevitably touch me on my arm (note, I'm not a touchy person), look intently into my eyes and say "how are you?!"
"Read the blog." I guess.
How am I? Still feeling remarkably well, really. Tired, and a bit too introspective, obviously. And lucky--that I do feel ok and have so much support and all that good stuff that I really shouldn't feel guilty about.
Better lucky than good, my grandfather always said.

IN OTHER NEWS...

...xander dropped jim's keys down the elevator shaft at daycare. He was inconsolable (xander-- well, probably jim too) But they got them back with little problem. Jim let X carry the keys into school the following day. He held on tight.
...liam is days (maybe hours?) away from crawling. This is going to be the end of our lives as we know them, because a) liam is a "hmmm, I really wonder what this plant tastes like" kinda guy and b) all of xander's toys are small, plastic, and soon to be in reach.
...my mom ultimately signed the papers at the auto body shop, but refused to pay the $250 deductible. They said they will sue her. She said she'll see them on Judge Judy.
...we went to the tubing hill in Fraser when we were up in the mountains this weekend. This is no wussy parking lot sledding. You can't even see the tubers on part of the hill because it's so steep. 2 years olds aren't allowed, but luckily xander doesn't really answer strangers when they ask him questions so we went with the he's 3 theory. He loved it. I got to go too. (maybe there's some of me in him afterall).
...I feel (almost) perfect (if you neglect the fact that if I move my head a certain way it feels strange because there is a tube going from my chest into my jugular vein). We wonder if this means the chemo isn't working? Can they give me a higher dose because I'm handling what I've gotten so well? Am I insane?
...Duke and Florida are in the Sweet 16. Rock on!

Coordinated Happy Thought Alert #2: 9:45 treatment. No surgery beforehand this time. Rock on.

FUZZ UPDATE

The other day I went to a "Look Good Feel Better" Session -- a two hour, hands on workshop that included lessons on makeup and ways to deal with hair loss. The wonderful woman who is a volunteer teacher for the course and recommended it to me said I should go "sooner than later." Apparently, the other ladies there didn't get that same advice, as they were all almost done with their treatment, and quite bald, (and way older than I am.) A bit shocking, but hey. I did get a ton of free makeup, (which brings up my household makeup quota to pretty much nothing+ a ton.) I think the other teacher of the course was a bit exasperated with me because I was so clueless-- ("clarifier? where does that go again?") I think I blew it in the beginning when we were talking about foundation and she complimented me on my use of it... "Uh, I don't wear makeup," I told her sheepishly.
But it is a really amazing program, and, among other things, I learned how to draw on eyebrows, which will come in super-handy when I don't have any. Plus they showed us some really cool things to do with half a t-shirt wrapped around your head. Who knew?
Speaking of hair, I still have all of mine (the short version anyway). I wake up every morning wondering if this will be the day that it starts to fall out in clumps and I'll just go ahead and shave it all off. At most I have another week. But I've enjoyed the short doo... lots of extra time in the morning, and now Liam has had to resort to trying to pull off my lips since he can't yank out my hair. Along those lines, I'm on a leg-shaving boycott because I mean really, I might as well take advantage of something about this. Jim is fairly horrified about this ("we'll have to change the sheets," he mutters). Something else I learned at that class is that your nose-hairs fall out, (I know, TMI-- sorry) and apparently this wrecks havoc on the allergies. Yet another "who knew" nugget (but happily not of the "WHAAA???!!" variety.) Jim keeps telling me I should take up swimming because I'll be so "sleek" (although I remind him that I could have more-easily achieved the same effect with the right kind of swim suit), but I digress...
So, in any event, it good program and the ladies looked great when they left. If you need any blue eyeshadow, please let me know-- (but I'm keeping the eyebrow pencil).

MOOD SWINGS

Yesterday I received a "mood ring" from my sweet sister-in-law fresh from Antartica via New Zealand along with the following note:

Dearest Carolyn,
This mood ring chart will help you read exactly how you
are feeling. It should turn blue when you feel "normal" (whatever
that means) and purple when you feel very happy. However, when you
feel angry, it will leave a big fucking red mark right in the middle
of Jim's forehead.
You better warn him.

:)

Don't try this at home: I've been feeling remarkably good (yeah!) with the notable exception of an ill-advised adventure on Saturday. We drove up to Jim's mom's house in the mountains and took the civic instead of the subaru because it wasn't snowing when we left, and we're, well, cheap (and stupid). Needless to say, it was blizzard conditions by the time we got up there, and the poor little Civic made it about 1/2 way up their crazy dirt road before giving up. Jim set to the precarious task of trying to back down the road without sliding off the cliff... Liam was screaming and stressing him out, so I had the not-so-brilliant idea to just walk the 1/2 mile up the hill with the baby to go get help (I'm so brave, remember...) Yeah, well... 15 minutes later uphill through a blizzard with a screaming, wriggling baby (who has an uncanny knack for head-butting my chest where the port is) I arrived like "a little match girl" (as Carol put it) feeling the worst I've felt. I don't remember what color the mood ring was when I arrived, but Jim kept a fair distance, needless to say.
The lesson I learned (other than to try not to be an idiot, a tall order, apparently) was that I should really really try not to over-exert myself (and that I really do feel well, relatively). An excuse to be lazy-- yippee!!

(JUST SOME OF) THE THINGS YOU LEARN...

• I would've had a better reaction to chemo had I been a bigger drinker in my past (I am not making this up-- my oncologist told me!). (damn clean living) At this point I just feel like I have a hangover all the time, which is probably what most of my Navy friends felt like all the way through college, and they did fine....
• Blog-link connections are far reaching, inspiring, and powerful-- thank you jeannette for getting me hooked into this amazing community!
• Apparently, my skin tone is "medium", as explained to me by the "Look Good Feed Better" sign-up lady over the phone (thus confirming I will have a lot to learn when I attend the class on Monday).
• I have cheekbones (as reported to me by a co-worker upon seeing my new hairdo :) )
• Asking for/accepting help is a good thing.
• Alexander can sing "Monkeys jumping on the bed" for over an hour without stopping.
• I get cold a lot faster without all that hair.
• If you don't take off your pants when they tell you to when changing into those oh-so-lovely gowns at the hospital, they probably won't make you.
• I have the perfectly shaped head.
• I have incredibly wonderful family/friends/colleagues (...but this I knew)

8 LITTLE MONKEYS...

jumping on a bed. One fell off and broke his head. Doctor came over and he said- NO MORE MONKEYS JUMPING ON THE BED!
One down!
It wasn't too bad. Likely due to all of the well-timed support... I can't tell you how much all of your comments/well wishes/happy thoughts, etc. mean to me. Thanks so much!
The port, although good to have, makes me feel a bit like one of the BORG on star treck. I have a tube that runs from up under my collar bone into my jugular vein then down into my heart (?). In any event, I feel/look kinda freaky-scifish. But better then getting IVs all the time.
The actual chemo session wasn't bad at all. I just sat in a chair and hung out with jim. (Jim pointed out I was about 1/3 the age of most people in there) They "pushed" this huge (red) vial of Adriamycin into my port over about 5 minutes. Then they dripped in the Cytoxan over about an hour... along with a bunch of anti-nausea drugs. (As the nurse pointed out, they gave me "everything they've got" for anti-nausea.) Didn't hurt, no immediate effects-- I was just tired from the port surgery in the morning.
It's strange to sit around and wait to see how your body's going to react. It's all so unknown. The good news is that almost all of the symptoms are treatable... better yet, I didn't seem to have that bad of a reaction to anything. Just kinda like a minor hangover-- not bad.
Yesterday, however, was bad in that it overstretched my physical capability and great in that it proved what a tremendous support network we have. I went to work in the morning, during which I felt fine and enjoyed getting lots of compliments on my "new do". In the afternoon I took Liam to the dr. because he's been out of sorts and seemed like he had an ear infection. Sure enough, he does, but they had trouble getting a good pulse ox while he was at the doctor and ended up having him sent to the emergency room in an ambulance. Poor little guy!
As has happened several times in the past, as soon as he got to the hospital, he perked up and seemed fine. Luckily, my mom met me there, as I was pretty well spent because I didn't get a chance to eat and it's still really hard for me to hold liam with port so new and all.
In any event, we ended up just leaving the hospital after several hours of not being seen by a doctor and liam being ok (and me going downhill). Lisa and Tracey picked up my car from the place so it wouln't get towed (I went in the ambulance), Dad picked up the prescriptions, our neighbor brought over dinner, Annie went to pick up jim's mom at the airport, since we couldn't go out, and our pediatrician actually made a house call to make sure that Liam was ok (which he pretty much is). My mom is watching liam today.
So, as for me, as a result of yesterday's exploits, I'm exhausted. What I would do without everyone I have no idea. Luckily I don't have to worry about that.

KEEPING THE WOLVES AT BAY

I really don't understand how people with short hair don't rub their heads all the time... I'm so fuzzy! So Operation Fuzz Head went well. Honestly, I was quite nervous and sorta freaking out right at the beginning, but after she cut off a huge ponytail on the top of my head and pointed out I had a really impressive mullet, I made it over this hair-loss hurdle. Yippee! Physically it's strange to not have my hair to deal with, man do I get bad "bed head", and I'm going to have to switch from my beloved Duke visor to a baseball cap, but all and all, not too bad. (Those detachable ponytails are in the mail!)

So my sister Lisa gave us a huge break last night and watched both kids overnight(!). We went gambling up in Central City. After immediately losing $10 after 10 spins of the $1 slots, I ended up winning over $20 on the nickel slots (!!). There's some lesson there about appreciating the small things, I imagine...

Coordinated Happy Though Alert: I go in for the port surgery tomorrow at 7:30 am. I honestly have very little idea what it will entail, but I think the actually surgery will be around 8:30 and I will be released around 10:30 (?). My chemo appointment is at 1pm (mountain time :) ) and is scheduled for about 2 hours.

Did you ever read any of those Jack Londonish books about the guys up in Alaska out in the middle of nowhere, having crazy adventures and trying not to freeze and/or get eaten by a bear? I kind of feel like one of those guys during the evening after supper... I'm out in the wilderness, but I've built a huge fire and I'm all full and toasty... but the sun will go down soon and I know the wolves are out howling and circling. But I've got a lot of wood and I'm pretty sure I'll make it until morning... but underneath the bravado, I'm pretty darn scared of the wolves.

Just help me keep the fire stoked, kay?

herewego...

HAIR TODAY, GONE TOMORROW

As expected, things are falling into place. Work is caught up, prescriptions are ordered (let's hear it for good health insurance-- $16 copay for a $316 (3 pill) prescription-- and that's just one prescription for one chemo round... mind boggling) I have a dentist appointment at 10 and at 11:30 I'm going to get my hair cut off. This go round, I'm just going to get it cut really short (at least 10 inches cut off, so I can donate it) and I will shave it off in a few weeks. Should be an adventure. The last time I had short hair I was 14 and I decided to grow it out because people couldn't tell I was a girl (I had a long & ugly awkward phase from about 4 to 15). Should be interesting.
A friend of mine, who is pretty much bald, told me it's no big deal-- he oughtta know. Fair enough, I guess-- for him... but it's hard to explain what HAIR means unless you've had A LOT of it for a LONG time. You have a lot of things that accompany it (jim is forever complaining about the barrettes, rubberbands, headbands etc. everywhere... although I never can seem to find one!) Even someone as low maintenance as I am spends a lot of time dealing with it. You can use it to predict the weather (curly = rain on the way). It gets everywhere (e.g., when jim and I went on our trip around the world, and stayed on for the second 6 months without me, he was still finding my hair in/on all his stuff even after we'd been on different continents for months). Alexander and I use it as our secret tunnel and it's a neverending peek-a-boo source of amusement for Liam (at least what he hasn't yanked out yet). You don't often need a hat. You can use it to hide behind. When I was in the navy I had to wear my hair pulled back and up off my collar-- once when I was on leave off the ship, they didn't want to let me back on because they didn't even recognize me with my hair down. Wasn't there even a musical about hair in the 70's?

Let it fly in the breeze

And get caught in the trees

Give a home to the fleas in my hair

A home for fleas

A hive for bees

A nest for birds

There ain't no words

For the beauty, the splendor, the wonder

Of my...

Hair, hair, hair, hair, hair, hair, hair

Flow it,

show it

Long as God can grow it

My hair

(Gotta love the Internet) ...before you start commenting (ben) I do NOT have fleas in my hair... and my favorite verse:

Oh say can you see
My eyes if you can
Then my hair's too short!

Lisa and I are going wig shopping after I get it cut. I'm looking forward to it. A chance to reinvent myself. How many times in life do you give yourself the license to do that?

And better yet, it's on my terms. Best yet, some little kid somewhere will be able to play peek-a-boo with my hair too.

OF OKC, PREGNANCY PARALLELS & IRONY

Friends in low places
I just returned from a quick business trip to Oklahoma City. I've traveled there something like 15 or 20 times during the past few years, so it's sort of like walking into the bar at Cheers (e.g., on my last trip there, I brought Liam, and Gail, the secretary, watched him during my meetings-- how's that for a family friendly office?). In any event, it was great to be face-to-face with people I talk with on the phone almost every day, and to bask in the well wishes of a lot of those (I'm guessing) anonymous time-off donors. I was greeted at the door with a bear hug from the indescribable office manager (larger than life doesn't do him justice) who whisked me into his office and gave me a really wonderful mix cd he'd created for me, and an "Oklahoma T-shirt" which reads: "Ted Kennedy's Car Has Killed More People Than Have Been Killed at GITMO." (He thinks I'm too liberal). I was very touched. (I guess sometimes treasures come in unexpected ways and forms.)

What do you mean it's March?
I feel like I'm running out of time. When am I going to go to the dentist? get new contacts? get my hair cut (off)? pick up my prescriptions? finish my projects at work? be able to travel? I know my life isn't going to come to a screeching halt on Monday, but I know it will change, at least for a bit, and although mentally I think I'm doing pretty well, I'm feeling a bit logistically challenged (especially since we're going to the mountains this weekend). But if there's one thing I learned from maternity leave (alexander's coming 3 weeks early) it's that everything will wait, no worries-- (except for getting the prescriptions part, that I need to find time for). There are a surprising number of parallels I can draw between having chemo and being pregnant/having a baby (but at least I know the due date on this one). Lots of doctor visits... lots of positive attention... believing whole-heartedly in positive attitude & medicine (likely in large and equal doses) getting me through discomfort... I still remember being very physically uncomfortable & extremely tired while I was pregnant, (for a similar amount of time as a the chemo, I think) so hopefully that was good training... and ultimately that it's all so very very worth it. (And at least this go round I'll be able to fit into cars.)

Isn't it ironic, doncha think?
One of the chemo side-effects that I was dreading above most others was the possibility of getting mouth sores, because every so often I'll get a cold sore and I hate them. Today, for the first time in over a year, I got a cold sore-- likely because I got sunburned in Mexico. Go figure.