Kicking Breast Cancer's Butt

DIEP flap reconstruction

I’ve noticed and commented on it my whole life, yet it never ceases to amaze me how my real life experience changes my priorities.

Readers of this blog know all too well what I obsessively worried about when I first began treatment for cancer.  The side effects from chemo were no joke – nausea (we have medication for that now), heart damage from the taxol (years from now) and lung damage from the radiation (small possibility, but by no means a certainty – I’ll worry about it when and if the time comes).  What I was obsessively concerned about – when will my hair start falling out?  Every time I shampooed, I asked myself – Is today the day?  Is today the day it comes out in clumps in my hands?  Sometimes I’d get out of the shower and just sob – my loss of hair wasn’t total, but my already fine hair was becoming increasingly thin.  I knew I should have it cut very short, but I dreaded going to the salon, leaning back into the shampoo sink, and worried that that would be the moment my hair as a unit would simply fall out into my hairdressers hands.  It didn’t.

After a time, though, I finally made an appointment to have my hair completely shaved off.  The woman who shaved my head was wonderful, and I was surprised at how normal it felt to talk to her about it.  When it was done, I didn’t wear the scarf or hat I had brought with me to wear out in public.  It just didn’t seem like that big a deal, and in the short walk to the car I wasn’t worried about anyone seeing my bald head.  Anyone following this blog knows that often during my treatment I would frankly just forget I didn’t have any hair, and would be surprised when someone would notice.  Plus it was the middle of the summer, and I was having hot flashes from the chemo, so quite often I would look at people with a full head of hair, and wonder how they could stand it.

Being a one-breasted bald woman was also strangely empowering, as I found out one day when a salesman came to the door, unfortunately for him when I was in one of my “moods” (for details, see post “Bald Is Power” http://wp.me/p3b1hy-7g).  So much for loss of hair being the end of my world.

Now we’re through with what I considered the hard part, treatment, and I can collect my reward, the tummy-tuck reconstruction.  Yippee!  I survived the first surgery, 20 weeks of chemo, and 6 weeks of radiation.  We made it through the requisite number of weeks recovery, it was now time to plan the surgery.  The preparatory phone calls and discussing the schedule for 3 weeks before, 2 weeks before, the week before, the night before, and the morning of the surgery.  Crap.  Now I’m remembering the details from the first surgery, and I start worrying and obsessing about everything.  Ugh.  More incisions, more drains, more IV needles, more pain.  What was I thinking?  Do I REALLY need two boobs?

Before I had even begun my treatment, I so looked forward to the reconstruction.  The words “tummy tuck” breast reconstruction were nirvana to me.  A new boob and a flat belly would be my reward at the end of the battle, after getting through the mastectomy (which I thought was the hard part – fool), the chemotherapy, and the radiation.  As we have since learned, all the treatment was nothing compared to the endurance it has taken to get through recovery.  What a slog.

However, once we started to get close to reconstruction surgery day, I started to worry about waking up in the recovery room.  Well, waking up, period.  It’s always a risk, isn’t it, when you go under anesthesia for surgery?  Then I started worrying about pain management.  I don’t do well with most pain medication, but I learned the hard way, after the mastectomy, the groggy, zombie-like feeling I had on the pain medication was infinitely better than digging myself out the pit of despair I’d gotten myself into by thinking “my pain’s not bad enough for a prescription drug.”  Ha!

And then there was the constant nausea I experienced the last time I had surgery - I couldn’t even keep the anti-nausea medication down!  But thankfully, we found something that worked for me (a scolpolomine patch, which is applied behind your ear), and so I was able to apply that experience to the new surgery.  A conversation with the anesthesia team, and I was able to get what I wanted – the patch to prevent nausea, rather than experiment with various medications to combat the nausea –  before I woke up in the recovery room.

But you know what kept nagging me at the back of my mind?  The thing that really had me questioning if this was the right procedure for me?  I knew I would end up with a smaller cup size at the end of this, than I had when I began it.  I liked my boobs they way they were!  Can’t we just put in an implant the same size as my tumor was?  But when I signed up for this, all I could see was a flatter stomach – my reward, right, for having a boob cut off?

Fast forward to post surgery.  I am back home, Ken and I settle into a routine – I sleep in the recliner on the main floor, but I call him on his cell phone whenever I need to use the bathroom, as we have no bathroom on the main floor (who’s the idiot who fell in love with a house in which you must either ascend or descend stairs to find a bathroom?  Oh, yeah.  It was me.) and I am not to be trusted going up or down on my own.  The first couple of days, I have to pee every two hours, disrupting Ken’s sleep, but less so than if I took a spill down the stairs and end up back in the hospital, so we deal with it.  By the end of the first night, I think Ken’s so used to it, he can spot me during my nightly stair climb in his sleep.  But by the end of the second night, it’s getting old for both of us, and I’m fed up with sleeping in the recliner.  My feet hang off the end, due to the quantity of pillows around and under me, which exacerbates the neuropathy, and makes my feet feel cold.  I’m under doctor’s orders to avoid coffee, so this, among so many other things, is off the charts frustrating.  My mood is irascible, when I’m not sleepy, or a puddle of tears.  Sometimes even when I’m a puddle of tears, and I feel as if, sympathetic as he is to my troubles, my husband doesn’t fully “get” how terrible this all is for poor little put-upon me.  I can’t use my right arm, I can’t have coffee, no one does the dishes the way I like them done, and I haven’t pooped since I came home from the hospital.  Again and again I ask myself – what have I done?  I was feeling pretty okay (so I had neuropathy and no stamina – at least I could use both arms, I could bend at the waist, and I was pooping fine!), why did I DO this to myself?  I think that was the worst.  I CHOSE to do this.  I have energy to shower only about every three days, I can’t wear any clothes except camisoles and pajama pants, and I don’t want anyone to see me, other than my husband (he’s seen me worse) and my daughter (she’s used to seeing me look like a slob).

But gradually, the effects from the pain medication wears off, and I have my two-week post operative visit with my reconstructive surgeon, who gives me the all clear to return to my first love, coffee.  After that I have fewer hours of self-pity and sadness, fewer episodes of unexplained crying (“Poor mama.  You need some coffee, don’t you?” my wise 0-year-old once observed), and other than one frightening run to the emergency room in the wee hours of a Monday morning (I was pooping by this time, but apparently not enough, as I was painfully constipated – sorry to be so frank, but there it is), things have been steadily improving.  I can go up and down stairs by myself.  I can stand up in the shower (though I’m still very careful, and I worry all the time about falling), and I can do a load of laundry.  Oh, and my caffeine consumption is up to a level that I find beneficial to my mood, as well as motility (nothing like coffee to get things moving).

I can now wear a soft, stretchy bra (so my one remaining original breast has support as well), and this past Monday I was able to put on a pair of jeans over my yoga pants, and zip them up.  I’m told that some “flappers” (the adorable term used by posters on Breastcancer.org, to describe those of us who have had a DIEP flap breast reconstruction) have swelling in their abdominal area for weeks or even months after surgery, and being able to wear a pair of jeans over bike shorts or Spanx is a huge deal.  For me, it was just exciting to have something different to wear, even if it was a little uncomfortable, and I did in fact take my jeans off immediately once I got home.

I’m now about 8 weeks post surgery, and I’m pleased to say I’m taking all of these milestones for granted.  My hair is growing (still have some chemo curl left), and so now I have to do something with it when I go out of the house.  Well, I don’t have to, but at least now I think about it, and sometimes I even give it a try.

Sometimes I brush against my new boob, and for a split second, I think it’s just the pillow padding that came with my surgical bra.  Then I remember, I have two boobs again!  And then I have to have a sneak a peek at my chest.  Oh, I have cleavage again!

And you know what?  My new boob doesn’t have a nipple yet, it’s sort of a funny shape, it’s got a couple of divots, and it’s surrounded my scars.  It’s smaller (for now) than the “natural” boob, but it’s perky, it’s soft, and it’s warm.  It’s all me, and it doesn’t contain a big, fat lump of cancer.  And I love it.

I wonder if this is how astronauts feel?

Three days out from surgery day, and I’m starting to tweak out.  I have only one half of a Xanax left, and if my primary care physician doesn’t approve a refill, I need to save that for surgery day just to get me in the door of the surgery center.

I’m waiting on the call from the surgeon’s office, to tell me when I need to check in.  I had planned to veg out over Perry Mason and forget everything else, but I have not been able to relax.  I keep thinking about how after this weekend, when Michaela goes back to school, I will be going into surgery.  And I. Am. Freaking. Out.

We’re 11 days out from stage I of the DIEP flap surgery.  It’s sort of daunting, thinking about what I’m about to undertake, and how much I have ahead of me, and how much I’m going to be hurting.  Then there are the incisions and drains, and worrying how I’m going to wash my hair when I can’t lift my arms over my head for at least 4 weeks…

Then I think about how very far I’ve come already, and I know.   I’ve got this.