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Letters From My Mastectomy

Posted Oct 27 2012 9:59am

Do you ever look at old emails, love letters, and feel a wave of satisfaction because of how far you’ve come?  I was cleaning out my inbox, and I found some correspondence between me and a fellow BRCA1 mutation carrier (who had not had her mastectomy yet) about my mastectomy recovery process.

I’m currently in a great place physically and emotionally, and I wouldn’t change any of my decisions.  Having a bilateral prophylactic mastectomy has given me my life back in ways I didn’t know I had lost it.  I’m free from mammograms, MRI’s, hospitals, biopsies, and anxiety.  Breast cancer is no longer something I’m going to get.  I read somewhere that the mentality of a breast cancer “previvor” (a woman who survives a hereditary predisposition to breast cancer) is much like that of a breast cancer survivor.  There is a lot of fear and anxiety, wondering when and how aggressive the inevitable breast cancer will strike.

I broke down a little bit when reading these letters.  Right after my mastectomy was a really dark period.  I was in excruciating pain, and wondering if I had done the right thing.  I was on painkillers, my chest was bruised and deformed, I had limited arm motion, and I was completely miserable.

I had my mastectomy on July 28th, 2011.  An excerpt from an email I sent 5 days later:

…The bad: I’m not going to lie – the pain is worse than anything I have ever felt before and these drains make it hard to sleep.    I miss having full use of my arms, working out, sleeping on my side, being comfortable, and pooping.  They weren’t kidding about the constipation.  The pressure of the expanders being under my chest muscle is really intense.  My hair is very greasy and I am starting to smell bad.

The good: They were able to keep my nipples and I seem to be healing quickly.  It does get easier everyday to move about.  My main focus now is to heal from this surgery and finish my reconstruction.  Breast cancer is now never going to happen to me.  And at this time next year, I wont remember the bad – only the good :)   It’s also really weird to think that I don’t have breasts anymore.

I hope none of this scares about the surgery – it’s no cake walk – but it’s definitely worth it in the long run.  I just would want someone to be honest with me about what its like.  It’s often easy to forget how major the surgery is when we look at reconstructed breasts.  It’s a very intense process.

I have seen what I look like without the bandages.    My plastic surgeon actually didn’t want me to wear a mastectomy bra until I went home, so I saw right away.  It’s not pretty.  I kind of look like a flat chested version of myself that lost a fight.  Bruises and cuts everywhere.  I can see the outlines of the tissue expanders. The tissue expanders feel like I have two elephants sitting on my chest.  It’s a very weird feeling.  I think I’m going to have Steve take a picture of my boobs every day so I can see the progress.

I felt fine when I woke up from surgery.  I don’t really remember much.  I don’t even remember them putting me under.

I have been on vicodin since Friday afternoon.  The pain probably gets 20% less every day.  I’ve been able to get through today taking it every 5-6 hours.  At first I was taking it every 4 hours and by hour 3 I was dying to get my next pill.  I only have about 5 days of pills because its a really unhealthy drug to be on long-term.  The first night I was hooked up to pain med IV where I could press the button every 10-15 minutes if I was feeling pain.

Thursday night I had terrible nausea from the anesthesia + pain meds.  The first wave happened the first time I tried to stand up.  I started dry heaving into a basin (although nothing came up).  They gave me two types of meds for the nausea.  The first one didn’t work at all and then the second one really worked wonderfully and have the lovely side effect  of drowsiness so I was able to sleep for a few hours.

I have had a few emotional breakdowns along the way.  I cried a lot on Thursday night.  It’s really difficult to see through the pain and I was wondering if I had done the right thing.  Everyone keeps calling me “brave” but I don’t feel brave.  I feel like I chose the lesser of two evils.  I could either spend my life getting tested and biopsied and having anxiety, or I could go through a painful operation and free myself from a lifetime of fear and doctors.

I wish I knew the anesthesia slows down your bladder too so even though I really felt like I had to pee, nothing came out.  very weird.  I must have sat there for 10 minutes.  I finally was able to pee Thursday around 10pm.  Then it was a peeing marathon.  At first I was so confused why I had to pee so badly given how little I was drinking, but they gave me so many fluids that I woke up almost every hour and had to call the nurse to help me go to the bathroom.  Not fun.  Especially since I had these anti blood clot boots on (fabric “boots” that squeeze and release your calves to make sure you don’t get blood clots.  They were on until Friday afternoon).  So in order to get out of bed, I had to get someone to come take my boots off, help me out of bed, walk me with my pole to the bathroom and help me sit on the toilet.

The mastectomy bra is horribly uncomfortable.  They put lace on it to make it look “pretty” but that lace is make me itch.  I often wake up in the middle of the night having opened the bra in my sleep.

The drains have been easily the worst part of this.  its uncomfortable to sleep.  I am wearing Steve’s shirt because none of my button downs fit around the drains.

When they unhooked the pain IV, I had a really bad episode Friday night where everything just started hurting.  My wounds were hot, I had a rash, I was shivering, and I was paralyzed with pain.  It was so awful.  They gave me an injection of something really strong and the anti-nausea meds that worked before.  I was completely high for the rest of the evening.

Steve was so sweet.  He spent both nights with me in the hospital and helped me get up and brush my teeth in the morning (I recommend bringing an electric toothbrush to the hospital so your arms also have no work to do).  We also had a system where he would spread face wash on my face and then give me a damp paper towel and a dry paper towel to wipe it off.

Not washing my hair hasn’t been terrible.  Its greasy and looks awful, but I really wish I could wash my armpits right now.  They are sweaty and smelly and gross.  I have been using baby wipes as a temporary measure to clean my lower half.  I’ve also been able to brush my teeth and wash my face which makes a huge difference.

I don’t know what my filling schedule is yet.  I am seeing my plastic surgeon tomorrow where hopefully the drains will come out and they’ll let me know what the schedule will be….

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