Home Again

Today’s blog is not for the faint of heart or stomach, o fearless readers.   So finish your sandwich or latte and come back when it’s well digested.

You were warned.  🙂

So Monday I went to the hospital and spent most of the day under anesthesia while my surgeons did the complete right mastectomy (pathology was clear on that by the way, yay!) and created a couple of  frankenboobs in their place.  Something I did this time around was look for as many pictures of my procedure as I could so I had a pretty good idea what to expect.  There is a thread on the Young Survival Coalition bulletin board that I highly recommend to people that is devoted to reconstruction.  Brave young women post anonymous pictures of themselves at various stages of their reconstruction so that people like me can get a better idea of what it really looks like.  I plan to post mine as well (though I forgot to take a “before” picture).  Paying it forward and all.  So basically my surgeons are very pleased with how the skin looks (I sort of think frankenlefty looks like a baseball.)  And based on the pictures I saw, my recon is right on schedule.

My chest feels pretty tight (ironically like I’m wearing a bra).  The expanders are in place and I’m pretty sure the plastic surgeon said frankenrighty is already 2/3 expanded.  I have a bazillion medicines to take and I have to admit it freaks me out a little.  I made the rookie mistake of taking 4 ibuprofen at the same time as 2 percocet.  My stomach quickly reprimanded me for that.  I have to give myself  a shot of blood thinner every day.  Which also freaks me out a bit.  Better that than clots though.

As usual, I felt like I received great care at our local hospital.  My room was huge.  Corner suite (or “isolation room” as they call it.)  Apparently word got out about what a scary patient I am.  Grins.  By Wednesday I was regularly walking laps around the cancer ward (I started calling it the Poop Loop.  Anyone who has had surgery can figure that one out.)  The hospital was testing their alarm system on Thursday.  Woo.  One time the alarm was Code Red, so I stuck my head out the door and asked the nurses if we were supposed to be walking out single file.  You can take the teacher out of the school and all…

So lots of people came to visit me at the hospital and I thank everybody who came by 🙂  I had been trying to figure out whether to put my compression sleeve back on and my physical therapist (thanks for visiting!) reminded me that I actually have 4 drains on that side right now and that my arm is probably at an all time low in terms of edema.  Which it was.  I could actually slip all the identification bands off my left arm without cutting them by Thursday.  

So I have 6 drains that I will probably have for a while.  Last time I only had 2 and I had them for weeks.  I still think it’s kind of weird that we have to drain and measure the liquid every day. 

So anyway, that’s what I’m doing, where I’ve been.  I am glad to be home again.

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Perspective

It’s a funny thing how things can change over time. 

When I was first diagnosed, I blogged about my visit to the plastic surgeon.  Weirdly, I was scheduled to see him 2 days after finding out I had cancer.  Looking back now, I realize I was in shock.  I still HAD Lefty and couldn’t even wrap my mind around the idea that it would be gone in a matter of weeks.  Reconstruction was the least of my worries.  I wanted to live, and part of my body was trying to kill me.  I just wanted it gone.  I wrote about how I didn’t care if I was ever reconstructed. 

Now here I am, a year later, not dead.  With lymphedema.  And a cute haircut.  And much disdain for my prosthesis.  Flefty likes to wander up into my armpit.  Which is very attractive.  Most people ask if they have anything in their teeth before going on stage.  I have to ask if the girls are straight.  (Sorry about all the euphemisms, but I’m trying to avoid pRon spam.)  Flefty is hot in a non-sexy way.  And no longer matches Righty.

I’ve also had a lot of time to ponder whether to get Righty removed.  It would help lower my cancer recurrance rate (which is about 60 to 70 percent right now.)  It would probably help my stress level since the need for extensive mammograms would be eliminated.  One less scan, right?  It’s also my best chance for both sides to match, recon or not.

So…I decided to go back to see the plastic surgeon and see what my options were.  I had LOTS of radiation which can make reconstruction difficult.  I flat out asked him which sort of recon would be the most successful.  He said, that in his opinion, making a sort of skin/muscle bra from part of my left back and inserting implants on both sides was my best option.  It’s a 3 to 4 hour surgery with a 4 – 6 week recovery.  I’d have expanders for a while and then exchange them for implants when they’re ready.  I will lose some power on my left side, but I’m not a champion skier or a tennis player, and he assured me it wouldn’t affect my piano skills so I’m think I’m OK with this.

The other perspective change I have is about my plastic surgeon.  He was really nice this visit.  Funny and supportive.  Not like I remember him at all, which makes me wonder if my being in shock had something to do with my impression.  I would like to think that I’m a person who fesses up when they were wrong.   So here I am.  Fessing.

So….sometime in July I will be having surgery.  Again.  But this time it will be because I want it.

The L word

Lymphedema.  Bleah.  Next to chemo it’s sort of the other great unknown in the cancer world.  I know BC (Before Cancer), I had never even heard of it.  I take that back.  I had heard of it by watching those shows about the really big people on the Learning Channel and it was primarily in their legs.  It was definitely not something I associated with cancer.

I had my evaluation last Monday, and I was right.  My left arm was 2 cm larger than my right, and my left hand is swollen.  It hasn’t spread to the fingers yet.  I’m currently in a temporary compression sleeve until I can get the permanent one.  And the gauntlet.  Yep.  Gauntlet.  Awesome.  The lymphedema therapist recommends I wear it 5 out of 7 days.  For the long haul.  I’m not sure how I feel about that.  Annoyed mostly.  I also have been doing Lebed exercises to open the lymphatic channels.

Some of my girls over at Mothers with Cancerhave been dealing with this for a while and have been very supportive.  (Still waiting for that lymphedema post, WhyMommy.  *grins)

Everybody’s got something to hide, except me and my monkey.

I wish I had a clever way to tie that in, but I don’t.  I just like that song.

I realized this morning that I haven’t really posted an update (which would be nice for all the people who read my blog to see how I am.)

I’m ok.  I have hair.  It is red.  I’d post a picture but I can’t find the camera.  (I will be really sad if I lost it.)  I ache a lot.  Who knows why.  Could be tons of reasons.  I ached before I knew I had cancer.  I had an ultrasound of my thyroid done because it was enlarged and bugging me.  Haven’t heard anything yet so I’m going with the “No news is good news” cliche.  I’ve been on Tamoxifen for a while.  Weirdly enough I’ve started having hot flashes again.  Again.  Don’t know why.  Lucky me.  

I have a lymphedema evaluation on Monday.  I think we caught it pretty early.  So that’s good.  Who knows.  I’ll know more on Monday.  I’m at pretty high risk for it.  I’m a big girl.  I had the axillary node dissection.  I had radiation where the nodes used to be.  I have a 3 year old that still wants to be picked up.  All those things factor in to risk.  Lucky me.

Cancer things aside, I’ve been a busy girl.  Play-dates for the kids, accompanying gigs (which actually led to another one in April.  Woo!), trying to do some volunteering.  Basically trying get my life organized.  I’m not an organized person by nature.  Which is weird.  I totally thought I was.  But I’m not.  As it turns out, my mother is a totally organized person and I sponged/modeled myself after her when I was a kid.  Left to my own devices, I’m pretty fly by the seat of my pants.  So I’m trying to channel my mother.  I would try to channel my mother in law because she keeps an immaculate house, but I think I need to start with baby steps.  I did take 3 bags of clothes to the G0odwill.  It’s a start.

In my pursuit of being greener, I quit buying paper napkins.  I replaced them with cloth napkins from the dollar spot at Target and bandannas from Hobby Lobby.  Once I had enough to have a rotation with the laundry, I find I don’t miss them much.  I still use paper towels, but I’m working on that as well.  🙂

But mostly, PirateCancerMommy is in the closet on a poorly organized shelf; taken down only when I have to see the oncologist or late at night when I can’t sleep.  Instead I have been doing the things I couldn’t do last year.

Lucky me.  🙂

 

PS.  My heart and prayers go out to Lisa’s family and friends this week.  She was a wickedly funny lady and I miss her already.

Random Things

Ok.  Does anyone else think this looks like a flower boob?

I was in King Soopers this week (ok.  Every day.  Am I the only one that ends up at the grocery store every frickin’ day?)  And I saw this.

Fighting Breast Cancer, one cracker at a time...

They’re on sale too.   I am grateful for any money that goes towards a cure, but MAN, some of the things that are “pink” amaze me.  Awareness is important, but I think some retailers just slap a ribbon on random products that aren’t selling.  I half expect to see a pink ribbon on last week’s potato rolls.  I’m beginning to think I missed a holiday somewhere because there is this “pink” aisle between the Halloween stuff and the Christmas stuff.  Apparently we’re skipping Thanksgiving this year…

Radiation update: I misunderstood.  I don’t get the scar boost until the end of treatment unless my skin starts coming off or something.  🙂  They just do the simulation early in case they need to switch stuff around.

Radiation, halfway done

This is in the radiation waiting room. Love it.

Radiation is still going well.  I’ve been told to expect some fatigue but it hasn’t shown up yet.  I do have a lovely pink rectangle though.  It reminds of a PBS shape song L has been singing lately.  🙂  (Bear with me, it’s just the way my mind rolls.)  Starting next week, I get what’s called a boost.  Right now I get radiation pretty much all over my upper left torso, but next week they’re going to concentrate on my scar area.  That’s where my cancer is most likely to recur.  The boost will also give the rest of my skin a break, giving it a chance to heal before the home stretch when we go back to irradiating the left side again.   Other than the pink rectangle, the only discomfort I’ve had is when skin touches skin.  Like where my armpit touches my side.  It’s uncomfortable and almost feels like it sticks together, but still nothing like some of the sunburns I’ve had in my life.  Here’s to hoping it won’t be.  🙂

8 down, 4,252,876 to go.

Ok.  Not really.  People keep asking me how many radiation treatments I have left and I never know the answer.  It’s not that I don’t care, I’ve just never been a counter.  When I was teaching, people would ask, “When do you have to go back to school?” 

“Um.  When they call me?” 

or “How many days left until summer break?”  And yes.  I rarely knew the answer to that one either.  (Shocking!)

So, if I sat and thought about it a bit, I could come up with the answer 27.  (Wouldn’t it be cool if it were 42?  Then it could be the ultimate question!)

So here I am.  27 treatments from the end of radiation.  It’s not really as eventful to write about as chemo was.  No dramatic barfing.  No holing up in the bedroom for 4 days watching reality TV (Actually kind of miss that.)  Just 30 minutes, tops (depends if the nurses get me talking about my theories about public education, or more specifically how I believe that music education should be fun, informative and meaningful for all children, not just the ones that have a natural aptitude… wait.  Where was I?)  30 minutes.  This includes the breezy hospital gown, adjustments on the not so comfy board and arm brace, and the quick rays of death that are decreasing my chances of recurrence. 

The biggest difference between radiation and chemo for me is that I do more serious thinking in that 30 minutes than I ever did hooked up to ol’ Jethro the IV pole.  There is almost a social aspect to chemo, where in radiation treatments it’s just you and the big machine and just enough time to ponder Life, the Universe, and Everything.  Did we get it all in the surgery?  Am I holding still enough?  Did the chemo finish it off?  Will the radiation keep it from coming back?  Am I BRCA positive?  Will my daughter have to do this too?  Uck.  Don’t like that one. 

The truth is, I could drive myself crazy with those.  So I plod on, trying to incorporate wellness into my life.  Do the things I know will make me healthy.  Moisturize with aloe 4 times a day.  Ok.  Twice a day for sure.  Eat healthy foods.  (and ice cream.  There must always be ice cream.)  Increase my activity level (Only driving my daughter halfway to school.  Heh.) 

27 more to go.

(This will probably be the last time I know that number.)

You wouldn’t like me when I’m angry…

Heh.  Ok.  I’m not really angry.  Actually I feel just fine.  Had my first radiation treatment today.  I got to sit in the special “Gowned patient waiting room”: James Taylor playing in the background, donuts and coffee available, assorted books for reading.  The windows look out on to the Serenity garden (which actually just makes me think of Firefly, but I’m weird that way.)  So I sat in my breezy hospital gown waiting for my turn in the machine.   I’ve been so lucky, the nurses and therapists are wonderful here too (see entry on awesome chemo nurses).  So I lie down in my Grecian pose and the machine lights up, putting crosshairs on my notaboob, just like David Banner’s head.  As I’m lying there trying to pretend that my skull is glued to the board so I don’t move, I have the Incredible Hulk theme playing in my head.  And then just to change it up, it’s the walking away theme.

I probably dated myself with that one, huh?   So back to the radiation.  Basically there were some whirrs and clicks and I was done.  I feel pretty good.  Haven’t actually been angry yet to find out if my notaboob grows bigger, stronger and green. 

Ok.  So it’s nothing like that.  But wouldn’t it be cool if it were?

Out of whack.

So I went to the Radiation Oncology dept of the hospital all ready to get my new flashy tattoos (OK.  They’re tiny blue freckles.  But we can pretend that they’re cool.)  and found out my CT scan was crooked.  It placed my heart right smack in the field where they were going to radiate, which is no good.  After two more scans it was determined that it was not the scan that was out of whack, it’s that I’m actually crooked.  When you lie flat, your sternum is supposed to be directly above your spine.  Apparently, mine is slightly off, which means in order for it all to line up correctly I actually have to lean slightly to the left, with my arm up in the air and my head turned right to look over my shoulder.  Very comfortable.  If you’re posing for a Grecian vase that is. Figures.

I get my tattoos tomorrow and rads start on Wednesday.  Woo.

Fanny Pak, Kindergarten, and the Radiation Oncologist.

You might be asking yourself, “Self?  What the heck to all these things have to do with one another.”  The answer would be…absolutely nothing. Yep.  Nothing.  I’m going random today.

Number 1 on the agenda.  My beloved Fanny Pak has been voted off the island.  Apparently it’s one of the most controversial votes in the single season history of America’s Best Dance Crew.  (Yes, there is some sarcasm in the previous statement…)  So here they are, a clip from their last show.  Loved those guys.

Fanny Pak are Maniacs

 

Number 2 is that dearest L went to Kindergarten today.  In the same school and same room as I did back in ’79.  Same green carpet.  Same pea gravel.  Totally new Smart Board.  Those things are COOL!

L's first day of Kindergarten

Last, but not least, I saw the Radiation Oncologist today.  7 weeks of radiation, left front, left back, and left axillary nodes (or where they used to be…).  Basically fry me to a crisp.  They do it at an angle so as not to damage the lung and heart, but there is a 5% risk of damage.  There is also an increased risk of lymphedema (yippee.) with the radiation to the lymph nodes.  I go next week for the CT scan and probably will start rads the following week.