Typing While on Pain Meds - Always an Adventure!

Oh goodness.  I just typed an e-mail while on pain meds.  Actually, "typed" is a strong word to use there.  More like, "hit wrong keys and did a ton of backspacing."  Haha!  So, um, we'll see how this goes.

I'm typing this while my whole family is at this really fantastic-sounding children's museum in town. Let us all take a moment of silence for Kar missing out on something fun.

Thank you.  It's been a lifelong problem for me - I HATE missing out on fun stuff.  Which means that I usually push myself to do things that my body isn't ready for yet.  Sigh.  I'm trying to be good today, though.  Rest up.

The surgery went well, and everything seems to be healing up okay.  I have this cool stuff called Silvadene, which has silver in it, which is supposed to help you heal faster!  Cool, right?  I feel so luxurious and decadent, putting ointment made of silver on my wound.

The wound itself isn't terribly painful.  It's the stupid draining tube that hurts.  Man, I hate those things.  I shall always maintain that the worst part of baby delivery is the stupid IV, and the worst part of surgery is the draining tubes.

But I do have a funny story that I forgot to tell you about my draining tubes way back last August.  If you were with me then, you might recall that the bulbs that the tubes led to were unaffectionately nicknamed the Blood Grenades, right?  Because they seriously look like grenades.  Filled with blood.

So I had just had my double mastectomy, and my family all went to the Paul McCartney concert (one of the best experiences of my LIFE).  It's important to note here that I was on pain medication at this time.  So we're going through these checkpoint things so they can make sure you're not bringing contraband or firearms or whatever into the Delta Center, and everyone had to empty their pockets.  I wanted to empty mine, but they had blood grenades in them.  I think any normal person not under the influence of pain meds would have just walked through and not talked about it.

But, because I was on pain meds, in my drugged up stupor, I said, "Hey, what about these grenades??"

And the guards are like, "Wait, WHAT?"

And I pulled them out of my pockets.  "These blood grenades.  I can't unplug them and put them in your little trays..."

I think it was my mom who came to my rescue, saying something to the effect of, "Sorry, guys.  She calls them blood grenades.  She just had surgery.  And she's on pain pills."  They waved us past without further incident.

Haha!  Good times.  Good times.

So yeah, the blood grenade hurts quite a bit, but not the stitched up wound itself.  I still don't have a ton of feeling in my left...side. There's no breast there.  Just a concave indented thing.  I'm grateful that I don't have pain right there.  And hopefully my decadent silver ointment will do the trick to heal it.

From the sounds of it, the tissue expander option for my left side has sailed.  My skin is sufficiently ruined to make that impossible now.  From what my plastic surgeon says, my only option now is to have some kind of tummy tuck type of procedure.  They'll harvest skin from my tummy to make a new breast for my permanent implant.  And they may do the same thing on both sides, for both breasts.  They wonder if doing two different procedures for two different breasts may cause them to behave differently from each other.  So the easy tissue expander option might be out the door for the right side, too.  I'm getting prior authorizations and referrals and all that crap right now to see this lady who does this tummy tuck thing.  I guess she lives in Portland.  I don't know when the surgery will be - no idea.  I'll tell you when I know.

I guess my overall feeling right now is that I'm bummed.  I'm bummed that things didn't work out.  I'm bummed that I have to do more of a major surgery than I had planned on.  I mean, I guess I could just go without a boob there the rest of my life.  I just... want to look halfway normal.  I want to feel good. I want to get started teaching ballet.  In many ways, I've felt like my life has been on "pause" for so, so long.  It's just getting old.  I was just starting to feel good enough to jog, but I've been out of commission since my skin started really burning and since I lost my left boob.  Again.  Sigh.

I just have to keep chanting my mantra to myself.  At least I'm not dead.  At least I'm not dead.  Maybe I should get a less dark mantra.  One that's fun to chant.  Can I tell you the cutest chant my friend Rach used to do with her kids to help them clean up?  I seriously love it:

Pick it up!
Decide what it is!
Decide where it goes!
Put it away!

And then her kids added a line:  "It's not that hard!"

I need something like this.  Maybe something along the lines of:

Get on your knees!
Pray for help!
Get on your feet!
Get to work!
It's not that hard!

I'm up for suggestions.  Help me make a happiness chant, friends.

As of tomorrow, you may call me One-Eyed Willie.

Although it would be an eye without a pupil, if we're speaking metaphorically here.  (Yes, I'm talking about my boobs.)  Maybe One-Eyeballed Willie.  No, wait - Wilhelmina.  One-Eyeballed Wilhelmina.  Let's at least find some. damn. way. to keep me feminine, here...

Let's start from the beginning.  "You told me to go back to the beginning...so I have.  This is where I am, this is where I will stay.  I will NAHBEMOVED!!"  What moooovie?

Kay, so.  I had radiation for six and a half weeks.  All but the last four days were kind of in a big square going from between the boobs and over to my side, and then from just under my boob to my clavicle or so.  And you guys know this.  When my skin started burning, I had a really awesome wound in my armpit.  I'm seriously extremely pleased to report that the armpit has healed up really nicely!  Gorgeous, new, pink skin up in there.  Thank goodness.

The last four days of radiation were called the "bump up" days.  They only radiated along my scar.  Like if there was a big, fat caterpillar on my scar, that's the area that was hit.  And I could tell that the length of time that they hit it was longer.  It buzzed there FOREVER.  I was really glad that I didn't have to breathe shallowly for that part, though.  And I figured that, if I had some blistering and open-wound action in that area, it wouldn't matter that much, because I don't have a ton of feeling on that skin.

As predicted, the area got very red and started blistering.  I was doing the proper burn wound care and all that.  A week ago or so, I was pushing Gage along the street on his bike (he can't figure out how to continuously pedal, and in my overzealousness, I pushed it too hard - kind of my MO), and I pulled my left pec.  Oh the PAIN!!  I don't know what the deal was, but the pec, plus the radiated, messed up flesh in there - the combo was horrible.  I had to stay in bed for two days straight.  Eventually, the pec healed, and I was back to my normal wound care stuff.

I've gone back to my radiologist to have her look at my skin a couple of times, and as recently as Friday, I was doing well.

That all changed today.  I went to change my dressing, and, um, well...if my scar is the zipped up ziplock bag, it had unzipped.  It was so gross, you guys.  SO GROSS!!!!

And I could see my tissue expander right there.  Through the huge gaping hole on my boob.

Sigh.

Again, the pain wasn't horrid, because my nerve endings are pretty much shot right there.  So at least there's that.  I went to my radiologist's office, and she urged me to see my plastic surgeon as soon as possible.  So I got in to see him, and  he told me that sometimes, after you've been radiated, your body is trying heal up the skin and all that jazz, and that's when it finally dawns on your body that you have this foreign tissue expander in.  And it wants to kick that expander out.

So here's the game plan - I have surgery in the morning.  They'll take the tissue expander completely out and sew me shut.  We can't put another one in.  I will be concave on my left.  In a few months, they will have to give me a tummy tuck - yes, you read that right - to harvest skin from my tummy and make essentially a big old patch to put on top of my silicone implant on my left side.  The right side will go as originally planned - deflate my right side tissue expander, make a little cut, slide it out, slide the silicone one in, sew it up.  Badda bing, badda boom.  I wish it could be that simple for Leftie, but that's life, right?

So until then, I will have one fake, hard-as-a-rock boob on the right, and I will be concave on the left.  Yeah.  But I'm not mad about it.  It's just temporary.  I'm soooo past the point of caring about how I look.  I look like Frankenstein.  I've made peace with it.

And I get a tummy tuck out of this!!!!  Once again, let's review.  Would any of you have guessed that Your Dear Kar would end up getting fake boobs?  And a tummy tuck?  I wouldn't have pegged me for that.  Not in a billion years.  It's funny, where life takes you.

This is just going to be a one-day surgical center kind of a deal.  I've got good pain meds, and I'm on antibiotics, and my adorable church ladies are poised and ready to help with food and child care.  They're awesome.  Hopefully this will just be a little blip in the journey.

Wish me luck tomorrow.

Gage's Very Important Minutae

Oh my goodness, my little Gagey is so busy.  So, so busy.  Which is good.  I'd be concerned if he just sat there, staring off into space. 

He doesn't play with toys, per se.  He plays with household objects that he turns into toys.  Anything in the house is his, in his view.  Chopsticks?  Those are Gage's.  Scotch tape?  Solely Gage's.  Mom's decorative cardmaking buttons.  (Grrrr.)  Spoons.  Butter knives.  My armpit ice packs.

And you know, I'm glad that he is using objects in imaginative ways.  I am.  I just wish he'd not be up in my grill about it all day.  I was extremely, extremely ill yesterday (stomach bug of some sort) and totally out of commission on the couch.  Gage didn't have school, so of course, he got to work on his Very Important Gage Projects all day.  My sweet friend Janet had brought some playdoh over for the kids to play with, and Gage wanted me to help him make snowmen out of it.  We couldn't get the balls to stick together, so I grabbed the toothpick box and used them to skewer the snowmen.  Then I lay back down. 

So then, he wanted me to make birthday candles - me making the small flame and then skewering it to the top of a toothpick.  I made like a hundred "candles," making a hundred bathroom breaks in between.  Then it was paper airplanes.  He took page after page out of our paper binder (supposed to be for homework) and asked me to make paper airplane after paper airplane.  Eventually I had to put the paper binder on top of the fridge (that's where we put things so they're out of Gage's reach.  We have a whole buttload of crap on top of our fridge).  Then I lay back down. 

I was just dying.  I was feeling so, so poorly that I called Ben and begged him to come home so I could just sleep.  He did, and I was so glad.  So then Gage had someone else to help him with his Very Important Projects.

Gage has a pretty persistent cough this morning, so I kept him home from school.  As I've been preparing for our Relief Society Inservice meeting that's coming up, he has kept me on my toes.  He asked me to print a picture of a dinosaur.  I did.  He asked me to print fifty other things.  I said no.  Sorry; ink is EXPENSIVE.  Then he wanted me to rip a rectangle surrounding the dinosaur.  Then he got into my buttons again.  Then he got a bowl and filled it with water, and then put the buttons in the water.  Then he decided that he wanted the buttoney water in a baggie.  He specifically wanted me to use a spoon to put the buttoney water in said baggie:

Then the baggie started leaking.  So he emptied a toy bin and had me dump the contents of the baggie into the bin.  Then he got a large freezer ziplock bag.  Then he had me pour the buttoney water into that bag.  Then he asked me to rip some tape pieces from the scotch tape roll.  Then the tape pieces inevitably got stuck onto themselves.  Then I had to unstick the pieces from themselves.  Then he taped the picture of the dinosaur onto his toy bin.  Then I had to cut out the shape of an airplane out of a piece of paper for him.  And then another one.

It goes on and on.  Ay, carumba.  He's killin' me, Smalls!

Cancer stuff:

1.  Ben's skin scan went well. They removed two small moles that could have, in time, become cancerous.  And a skin scan?  It's like four people, searching every inch of Ben's body for moles.  Using these light/magnifying glass thingeys.  While he stands there, in a loincloth.  *Snicker*  Sorry, it's just a funny visual for me.  Poor guy.  But he's good!  He has to go in every three months to get scanned.  In a loincloth.  Hahaha!

2.  Today is my last radiation! I have to have the armpit radiated one last time.  It looks way worse then it did when it had a wound the shape of Louisiana in it.  I'm not going to even take a picture of what it looks like now.  It is seriously so gross.  And let's say that it's no longer Louisiana.  It's more like the Gulf of Mexico.  Yesterday, the doc was like, "Maybe we should wait a week for your armpit to recover..." but I was like, "No.  We're finishing this.  I can do it.  Let's just get the damn thing done."  The radiation to just the scar area hasn't had a bad effect.  Just red, like a sunburn.  I don't have any feeling there, so I'm doing good there.  My armpit - not so good. :(

3.  I was supposed to have my third of 17 Herceptin treatments this morning, but my little Sickie caused me to postpone it.

4.  My bladder still gives me a lot of problems.  My urologist is trying a different medication to help with the constant urgency feelings.  I don't think it's really working.  I get frustrated.  And I use a lot of that AZO stuff that helps with the urgency and discomfort associated with UTI's.  It makes you pee orange.  I LOVE that stuff.

5.  I find myself feeling really, really jealous of healthy people.  People who feel good enough to run, or play with their kids.  Or dance.  Sometimes I wonder if I'll ever feel good again.  The limitations of my body really bum me out. 

6.  I go in next week to get my right boob filled back up again.  And then, in three months, the plastic surgeon will examine my skin and make sure that I've healed sufficiently enough to get my "real" boobs put in.

But let's revisit #2.  Can you believe that today is my last radiation???  This is a cause of celebration, friends!  A huge milestone behind me.

Guess who is being over-ambitious and wanting to run a half-marathon with my friend this summer?  Me, that's 'oo.  I mean, if I feel good enough to train for it and everything.  She will attest to the fact that my health has made me pretty flaky in the running department of my life.  But wouldn't that be cool if I could do that??  It would be close to the one-year mark of my diagnosis, and it would feel so EMPOWERING to do that.  Kind of like, "That's right, Cancer.  I kicked your arse.  Here I am, a year later, alive.  And running.  Even though it's 3.7 mph running.  Most people can walk that fast.  But I digress.  I kicked your ARSE!!!"

Okay, I guess I get to go pop some popcorn for Gage.  Which he will probably use as a toy in some way.

I've got Louisiana in my armpit.

Soooo.... I only have 6 radiation sessions left.  Six!!  It has flown by.  And for the most part, I haven't had too much pain or discomfort.

Until last week.

It was the weirdest thing.  One day, I was fine.  The next day, my armpit/side/former blood grenade spout site hurt like crazy.  I think it finally dawned on my skin that it was being hit daily by radiation, and it got ticked.

The "breast" itself is doing great - just a little pink.  (I put "breast" in quotes because I feel weird referring to it like that.  It's not a breast.  It's a hard balloon filled with fluid, under skin.  There are no ducts.  There is no tissue.)  Above the "breast" - up to the clavicle or so - is kind of rashy-looking and itchy.  My upper left back is red - my masseuse (we'll get into that in a minute) says it's the radiation shooting through my body out to the back skin.  All of these I can deal with.

But what's going on with my armpit - it feels like a wound.  Not a sunburn, like they said.  A wound.  And it's in a bit of a difficult place.  It chafes when I swing my arms while, say, walking.  It chafes when I fold laundry.  It chafes when I bathe Gage.  It chafes when I do dishes.  It's an issue.  I've started kind of walking everywhere and doing everything with my left hand on my hip, a la Daphne:

Perhaps Daphne has been getting radiation in her armpits for the past 40 years and is avoiding chafing.  You never know.

By the way, I don't recommend looking up images of Daphne on the internet.  There are a lot of really sick dudes out there. :(

I've been jogging with a friend, and last week, I had to start jogging with one hand on my hip, elbow kind of flapping in the wind, and one hand swinging front and back like normal.

It's been so painful this week that I haven't been able to jog at all.  Plus my bladder is still causing me some pain, despite $200 medicine that's supposed to make it calm down.  Sigh.  My urologist's diagnosis - irritation - STILL - from having been exposed to Cytoxin, one of the chemo drugs in my cocktail.  He says it should eventually get back to normal.

I hate chemo.  Hate it, but grateful for it.

Anywho, are you ready to see my armpit?  I think it's fascinating, personally:

Did I just lose both of my readers?  Haha!  I hope you're not too grossed out. I just thought you might like to see what radiation does to your skin.  THE PEOPLE NEED TO KNOW!! Those are not droplets of water, my friends.  Those be blisters.  I don't know why they're in a line like that.  The above picture was taken yesterday morning.

This picture was taken this morning:

The blisters are still there, but not in the frame.  I wanted you to get a close-up of the cracking of what used to be just a blackened, sore area.  In the mirror, when I look at it, it looks like the state of Louisiana.  Mentally flip the picture over.  Can you see Louisiana?  I can.  Which is why I'm naming my left armpit Louisiana.  I've never thought of naming my armpits before, but I'm loving the idea.  I'll have to examine my right armpit and come up with something.  Softie?  Happy?  Supple? 

So yeah.  In a teeny bit of pain.  I use this special radiation ointment/cream on it.  I also use these wound dressing thingeys, which provide a tonnn of relief:

They kind of wrinkle and bunch up if I'm doing work around the house, so I save them for when I know I'll be sedate.  I tuck ice packs under my armpit (with protective cloth around them, of course) during the day when I'm cooking, doing chores, etc.  I just kind of hold it on with my upper arm and go about my day.

I have only one more treatment left on Louisiana, and then we'll be done with that part!!  They're going to do the remaining five treatments only around where the scar is on my left "breast."  I think I can handle that okay.  I don't have much feeling in that area, so even if it blisters or cracks, I won't be in much, if any, pain.  I wanted to finish my final armpit session today just to get it OVER with, so that it's not hanging over my head, but my doc wants the armpit to get a rest.  So we'll do five scar area ones (I'm calling them Caterpillars - long, but a little bit thick), and then they'll hit my armpit one last time a week from today.

Then I shall be done with Phase 3.  Phase 1 - Mastectomy.  Check.  Phase 2 - Chemo.  Check.  Phase 3 - Radiation. One week left. Phase 4 - Herceptin, which I've already started.  I go in every three weeks for it - it's an IV that only takes half an hour.  It targets my type of tumor - HER2+.  And it has zero side effects.  I like the sound of that.  I've completed 2 of 17 treatments.

My running buddy and I are thinking of trying to do a half marathon in June.  Eeeee!  I've never done  more than a five-mile relay!  But I so badly want to do it.  It will have been almost a year since my diagnosis, and I just kind of want to feel...empowered.  Like I've really stuck it to cancer and told it who is boss.

Oh, and masseuse - the hospital where they burn Louisiana up offers free Raiki, massage, and acupuncture to cancer treatment patients.  I la-hove this.  My favorite so far is acupuncture.  I basically get to sleep for an hour.  The needles don't hurt one bit.

Kay, my kids are screaming at each other downstairs, so I have to get going.  Pray for Louisiana. :)