What a load of crap!!

Ok, uh, you know how systems tend to power down after surgery (even when you don’t take painkillers) ? Well, uh, since bounding, bouncy exercise isn’t an option right now, I resorted to FIBER as my weapon of choice in this battle.

Lots of fiber.

I mean, really, a literal SHITLOAD of fiber.

And then, well, (blush) with the old powerful antibiotic side effect I think I have, uh, hmmmm… pretty much got that problem SOLVED.

OK. Other news.

Speaking of crap, this cheap keyboard I bought to get me by until tea-fried laptop gets repaired is a PIECE OF IT.

I’m a crappy mother when I get tired and overwhelmed (I actually knew that way before all this cancer stuff, but you might not have known). My particular crappiness really only hurts one child though. Paul is full of crap – so he just shoots it right back at me. Or maybe because he’s so socially intuitive, he just knows how to keep things moving in his favor.

My analytical 8-year old daughter is not so lucky.

Yesterday, at dinner? I’m sitting next to her, openly staring at her while she eats.

I’ve decided dinner is a sport and I’m giving her the play-by-play critique.

“Don’t eat so fast. God you’d think you were starving. We’re not in a barn you know.”

And the worst? The slow dark, disapproving mommy voice:

S-L-O-W D-O-W-N

Followed by a stony lipped glare.

She tries to slow down.

“Why do you bend your head like that into your plate? What is wrong with you? Don’t you know how normal people eat?”

She’s literally taking her fork and using it as paddle to slide food from her plate into her mouth. I mean, the girl isn’t even chewing her meat! If it weren’t for the hand and the fork blurring the picture, she’d be able to pass for my parent’s dachsund. No, wait, their dacshund is much more delicate. She’s more like my sister’s lab.

“Here let me show you how to eat. Sit up straight, like this. Lean your head over your plate, but not down. Now bring your fork to your mouth, not your mouth to your fork.”

She sighs and rolls her eyes at me.

So now she’s piercing pieces of meat with her fork, bringing the meat to her mouth, but being careful to leave the fork outside of her mouth. She grabs the meat with her teeth and kind of does a wierd chin jerk to toss it back into her mouth.

“Why are you eating like that? What do your friends say about the way you eat? Do they think that’s normal?! Why can’t you put the fork IN your mouth??!!!”

Even crazy maman knows she’s gone over at this point. I look at Francois and see he’s not too impressed with my daughter badgering either. And I swear, I have to leave the table because I simply CAN’T STAND HOW SHE EATS!!

Whew.

So you might be thinking I’m all guilt ridden and stuff — but honestly, I’m really very good at forgiving myself. In fact, I think I forgive myself more quickly than my friends and family (pre-cancer, of course) and uh, feeling forgiven before the person who wants to forgive you is ready, well, that can actually kind of rub them the wrong way sometimes.

And I’ve had to live with these crappy mother moments for, oh, what now — 8 years?

I just apologize. Somehow, I think that honesty helps us — and helps Delphine. She needs emotional behavior spelled out. When it comes to emotional perception, Delphine is like a gifted musician with perfect pitch who can’t understand people who enjoy Muzak. The social games we play to cover or distort our authentic reactions and emotions don’t make sense to her.

I’m like a living lab of human behavior for her, complete with a translation device.

So, I’m brushing her hair and I’m telling her how wrong I am to pick at her. I tell her I am sorry I explain my obsessive feelings. I promise her I’ll try not to do it anymore.

We’re all happy and close.

So we go back to the living room to watch the movie we were all viewing together. She asks for some apples and caramel. I bring her some.

She starts eating the apples…

but she won’t use her front teeth. She puts the apple slice back under her molars to bite them off.

“Are your front teeth sensitive?” I ask her, “Do they tingle when you eat something cold?”

😛 @#$%& (Crap!!)

Today’s STATS:

Left Side: GONE!!!
Right Side: 55 ml

(Ooooooohhhh…One more fun detail. When she pulled the tube out, it made that fleshy sucking sound they always use in CSI during the autopsies. Pretty cool. Didn’t hurt a bit. If you really want to know what it looked like, I’ll post something.)

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Feeling MUCH better — but food still tastes like, well, NOTHING!!

I was NOT ready to give up that incredible post-op sense of taste. AND — I think the antibiotics that last a long time are the ones that are affecting my taste and appetite.

Good news!

Left side yesterday: 30 ml!!! And I’m getting even less today.

Right side: 90 ml — and today is looking lighter as well.

Today:

Left side: 17 ml!!

Right side: 68 mil

I’m not in any pain anymore. I can see see redness at the drainage tube exit site, up to the armpit area — but I definitely feel things are getting better fast.

I see Dr. Harrington tomorrow at 2pm. I think the left tube will be going out!

And, by the way, I can type again.

INFECTION!!

Holy SHIT it hurt!! But the antibiotics are working now (I’m on two at the same time ) and I’m starting to feel better.

I think I’m just a pain wimp.

Apparently it’s a skin infection starting at the entrance of my damn right drainage tube!

THANK GOD for Peter Youngs and Kristy Middleton, who took Paul and Delphine today. I slept from 10am to 3pm.

On the up side, it’s the first time I’ve *really* felt like a sick person — so I really really enjoyed the cards from A&H in the mail today! I didn’t think my spirits needed lifting, but I felt very buoyed.

Here’s what sucks — the antibiotics take away my appetite and my ability to taste — that whole post-orgasmic food experience is on hold for while.

sigh.

I’ll write more later. My right arm doesn’t like this typing stuff right now.

Yesterday’s stats:

Left side 40 ml
Right side 105 ml

Dr. appt stats

Dr. Wahl (my oncologist)

The new information was basically about anti-nausea medication, the need to explore radiation as an option, long term hormone medication and then the long term post-cancer maintenance plan. I’ve provide the details below, for those interested in specifics.

Dr. Harrington (my surgeon)

Dr. Harrington suspected I might be secretly working out, thereby increasing my fluid output. I promised her that all I’ve done is go and fetch the newspaper from the driveway. I’m supposed to try not to use my arms so much.

Shoot!! I was enjoying the challenge of reaching the upper shelves in the kitchen.

BUT…she said I could drive! Apparently the restriction is really about pain killers. Since I’m not on them, I’m a free bird!

She took my stitches out– now I’m walking around the house feeling my chest is suddenly going to peel back ((SPROING)) like an overextended window shade ((phwapphwapphwapphwapphwapphwapphwap))

But I get to keep the drainage tubes until I make that magic 30 ml 24 hour total. She said to make an appointment for two weeks — and then call when I made the magic number in either tube.

Having Dr. H nag me about my drainage feels a bit like my mother threatening me with a visit to the gynocologist if I ‘didn’t get my period by age 15’.

My mother’s threat worked.

Dr. Harrington said that at the breast center conference discussion of my case that morning (I was DISCUSSED …How THRILLING!! …I’m so SPECIAL!) there was some debate about whether I should consider radiation therapy or not. Apparently the usual scenario with stage 2b breast cancer is to not do it. But they were discussing some long term study results that showed a significantly higher long term survival rate for estrogen positive cancers diagnosed in young women like myself when those women had radiation therapy.

Here’s the downside. The lymphedema risks increase significantly with radiation therapy, and my risk is pretty high already.

Have I written about lymphedema yet? Lymphedema is when your arm swells up with lymphatic fluid. Once it happens, it’s difficult to reverse. It’s nasty — but not fatal.

I like this website best for their information. I’m linking you directly to their prevention page.

http://www.lymphnet.org/lymphedemaFAQs/riskReduction/riskReduction.htm

Anywhoo — Dr. Wahl will have Dr. Preston (the radiation doctor…radiologist??…)’s office call me and schedule a consultation. I have until February to decide what to do.

So… Dr. Wahl.

You know how stupid you can act when you’re in shock and you think everyone else knows how this works better than you do? Well, I was stupid. I called Dr. Wahl’s office and asked them for an appt on the same day as my post-op appt with Dr. Harrington. That part is fine.

But Dr. Wahl’s receptionist asked me what time my appt with Dr. Harrington was. When I said 3:45, she said she could get me in at 3:20 to see Dr. Wahl.

“Are you sure that will work?” I inquire vaguely.

“You just need a 20 minute appointment, right?”

“I think so.”

“So we’re good.”

Of course, Dr. Wahl had a newly diagnosed patient come in and need some time. Ack! The stress! What idiot WOULDN’T think there might be some delay with a Dr. dealing with so many life and death emotional choices each day!??

I had a NIGHTMARE about this the night before. I dreamnt another Dr. (unkown mousy male generic doctor) kept me too long and made me late for Dr. Wahl. When I finally got to her office, she was all dressed up in her winter coat (??) ready to go home to her little boys.

So, the nurse weighs me (I’ve lost 12 lbs! 4 through diet and exercise, 4 via mastectomy and 4 just hanging out and trying to be healthy post-surgery.) and takes my vitals.

Then, while Francois and I are waiting in the examining room, I call Dr. Harrington’s office to find out if she’s running late.

She’s not. So we inform the nurse why we have to go…and we skip out on Dr. Wahl!! I felt so bad!!

AND she made time for us when we returned. A lot of time. I was ready to just give her my hoped for chemo dates and run, but she had a whole lesson plan prepared!

So unprepared was I that I was scribbling notes on the back of the little blue appointment note she had given me. I hadn’t bothered to get out my calendar or my cancer notebook.

OK. This is Dr. Wahl, mind you. If you are tired of reading this blog entry now, you might as well go take a nap before continuing. This woman packs a lot of information into a small time/space continuum.

Ready?

Anti-Nausea

With the chemo, intravaneously, she’ll give me Aloxi, which she called an anti-nausea medication — but which is also a serotonin inhibitor (read ANTI-DEPRESSANT!) — and decadron, a steriod. The steriod will make me a bit anxious and hyper.

So, uh, Friday nights, I’ll be MANIC.

I’m used to manic.

I can handle manic.

Sounds FUN!

PLUS — she’s prescribed two other anti-nausea medications that I can take as I need, Zofran and Compazine.

Zofran is another serotonin inhibitor. I don’t know much about Compazine. I’ll have to look it up.

And, I’m not supposed to throw up at all. She doesn’t think I need to be nauseous at all.

THAT is the best news ever.

And — I was just reading online that a patient’s anxiety levels impact nausea a great deal. Patients who are very anxious experience worse nausea.

I’m thinking my outlook is pretty good.

Apparently, they want to keep your estrogen levels even lower than post-menopausal levels. I’ll be on Tamoxifen until I’m clinically proven to be permanently in menopause. Then I’ll switch to another drug. I might be on drugs ten years or more — even if they ‘suppress’ my ovaries.

I love that verb.

(Could you supress the barking dog down the street? He’s keeping me awake at night!!)

They have this very cool thing going where they invite new patients in for an orientation to chemo room before your first chemo session. The nurses teach you the ins, outs and practical tricks.

So my nurses teaching session is scheduled for 2pm on Thursday, October 9th. My first chemo is from 11:50 – 3:30 pm on Friday, October 17th.

Open Call for Menopause Horror Stories

‘Move forward ten years. Do not pass go, do not collect $200’

You get a whole deck of interesting game cards with cancer. But that’s the card I have a hard time laughing at.

I’ve been reading that after chemo and hormone therapy, a woman’s body ages about ten years in terms of metabolism and fat/muscle ratios. Add a fast-track into menopause to that.

Good note? I work with a huge group of smart and sexy 50-ish/60-ish types. I can handle being a part of that club.

Bad note? Menopause. Shit.

I just did a hugely hormonal decade of pregnancies and breast-feeding.

My 20s were all about weekend long crying fits on the damn pill.

My 40s, at least my early 40s, were supposed to be a brief period of centeredness and emotional stability!!

So bring them on girlfriends. I need horror stories. When this emotional ship starts hitting those emotional rocks, I want stories of such horror that when I find myself locking bathroom door and running the shower to cover my screams of hormonal frustration, I can remember you and tell myself I’m doing a pretty damn good job at handling it all!!

WARNING: If you are NOT menopausal or post-menopausal, you risk a verbal slap upside the head if you even *try* to participate in this conversation. No cards, no books, no comments from anyone who ain’t been there, done that.

Fluid Stats:

Left side: 50 ml
Right side: 130 ml

Slipping…

Yesterday’s totals:

Left — 55 ml
Right — 120 ml

Paul crawled in my bed last night. This three-year old’s fetish is to push his feet into my side. Before tubes and stitches, I would find the morning imprint of his child foot on my side adorable.

Oops!! 9:20! I’ve got to go shower and take a nap before some friends from work arrive with lunch for a visit.

So much to do, so little time…. (3 hours!!)

BTW, ….I figured out two of the three things I was wondering about yesterday.

I wonder….

I wonder if I will ever have a bm again.

I wonder where the tubes coming out of my body actually come from?

I wonder how come they don’t just pull right out when I accidently catch them on kitchen cabinet door knobs.

Yesterday’s fluid stats:

Left Side — 45 ml (ALMOST THERE!!)
Right Side — 90 ml (Half of yesterday’s total!!)

Remember we’re aiming for less than 30 ml on each side.

The flowers, cards, food and gifts are helping to nurture my 8-year old daughter’s suspicion that I went and got this cancer on purpose — just to make her papa “my servant” and to get out of my regular ‘maman’ duties. I can see where she’s coming from. I feel very very good — so all of this support and attention feels a bit like a vacation. And, uh, (ahem) I have been known to go to great lengths to be the center of attention.

Still, I find her adorable and funny now, but once that chemo puts me in fast-track menopause, she better watch out!! (LOL)

She was very happy to have me brush her hair this morning for school.