My Drive-By Double Mastectomy

I am not a medical professional.  But I lived with one for 18 years.  My mom is a retired RN, and my sister-in-law has her doctorate in Physical Therapy.  Also, my cousin Jana is a Physician.  None of this is pertinent to the story.  I just thought it would give me some medical street cred and class me up a bit.  Because what I am writing about is mostly about medicine and medical trends.  And this post also has a whole lot to do with insurance.  And a heaping spoonful to do with politics.  And of course, everything to do with money.  In my opinion.  And just to be clear, I am not an expert on any of these topics.  But I have become a bit of an expert on being a patient.  The purpose of this post is to urge breast cancer patients to think twice in regards to same day outpatient surgery.

Those of you that know my writing know that I stay as far away as possible from confrontational or negative topics.  Because I like being happy!  And I love laughing!   But I am almost a month out from my "drive-by" mastectomy and it is time for me to write it all down before my pain killers kill my memory as well.

Here is my breast cancer story in a (buckeye) nut shell.  I was diagnosed on my 40th birthday with Invasive Ductal Carcinoma that was hormone positive.  It was bad.  7 cm tumor and it had spread to my lymph nodes.  I completed 20 weeks of chemo and the next plan of action was a bilateral mastectomy with immediate reconstruction, followed by radiation, hysterectomy, and removal of the ovaries.  My oncologist has now added more chemo (in pill form--a trial) after radiation.  So basically, I didn't just have a "dash" of cancer.  I had the whole enchilada!

I have to give a shout out to my medical team thus far.  Many, many people wanted me to go to Moffitt, the renowned cancer center in Tampa.  But I had a preschooler, kindergartener, and 1st grader all at home that needed their mama.  So I didn't want to have to drive 2 hours north for chemo and doctor's appointments.  Plus, I have the most common kind of breast cancer out there.  So it wasn't like I was a medical mystery that my doctors couldn't figure out.  I loved them all!  Especially my easy on the eyes oncologist!  I was happy with my decision to stay and get my treatment at home.

Delighted with my care up until surgery time.  I received my surgery instructions in the mail and noticed that my surgery was in an out patient surgery center.  Right away I was alarmed.  I need to note that a few months earlier I "woke up" and felt everything in the middle of my port surgery.  Crazy pain and they knocked me out right away.  However, when I woke up after the surgery was complete, I couldn't breathe.  They took X-rays and sent me home not breathing fully.  But that's another story for another day.  My point is that I had a smidge of anxiety having another out patient surgery.  I always calmed myself down by thinking "Girl, you had three C-sections in two and a half years and you recovered great!"  I recovered "great" in a hospital setting where I had a pain pump to get the agony under control and nurses around to help me when I continually vomited from the anesthesia.

So I voiced my concerns to my surgeons.  They were sympathetic and understanding.  Scheduling was blamed for doing the procedure outpatient.  They couldn't schedule me in a hospital.  So a nurse called me and we talked on the phone for over an hour.  I told her I didn't want to end  up like Joan Rivers, dead in a surgery center.  She assured me that mastectomies were done there everyday and I was going to be just fine.  If I wasn't ready to go home, they would transport me to a hospital for an over night stay.  I asked how long they would give me to recover before they sent me home, and she said "Probably an hour."  I was astounded and said, "That's all?!"  She then said "Maybe two hours."  The nurse said that I would be surprised at how fast I would recuperate.  Unfortunately I believed her.

Surgery day.  I'm calm and ready to go.  I generally don't get too worked up about things.  I'm not a cryer.  Actually, I'm kind of like a robot and am a champ at holding in emotions.  My husband and I drive to the surgery center.  I get a little irritated at him because he decides to stop at the gas station to get coffee and now we might be late!  We walk into the center, sign in, and wait with all of the geriatrics there to have bunions removed.  15 minutes later they call my name and tell me I'm in the wrong spot.  Of course.  We walk half a mile around the building to the correct spot.  The first thing they do is collect money.  Lots of it.  That I wasn't supposed to pay because I hit my deductible months ago.  But who cares about feeding my kids, right?  I'll get that money back three years from now.

After they steal my grocery money for three months, they start prepping me for surgery.  The LPN prepping was a doll.  Asking questions about my kids and attentively listened to me ramble on about them.  The anesthesiologist came in and told me she was going to do everything she could to make sure I wasn't sick, in pain, etc.  She even told me that my friend Michelle's anesthesiologist brother called her and told her to take extra good care of me.  My surgeon came in, talked to me, and made me very comfortable.  Everyone was great.  The surgery went great.  I have the best surgeons out there.

The problems started after I came out of my anesthesia fog.  Obviously I was in pain.  I still had an IV in so they pumped me full of pain meds.  My brain was not all there and working properly.  What I do know was that I got a bad apple recovery nurse.  She wouldn't respond to me when I told her I wasn't ready to go home.  She just told me to drink some water and eat a cracker.  I kept falling asleep with my cracker in my hand and partially chewed cracker in my mouth.  Next thing I know she told me that I was leaving.  I told her I wasn't ready.  She told me I was fine and would feel better once I got in my own bed.  She made me get out of bed to go to the bathroom.  I couldn't walk and was starting to feel sick.  In the bathroom I started crying a little and apologized to the nurse and told her "Sorry, I'm not usually like this!"  She did not respond and did not make me feel better in any way.  After the bathroom they put me in my pajamas that I brought.  My pain was really starting to increase and I was getting sicker.  My recovery nurse put a big ace bandage around my chest.  She put it on backwards and another nurse had to correct her.  Again I told her I wasn't ready to go.  She told me I was fine.  Or something like that.  It was obvious she was a new nurse, wanted to go home, and this was just a job for her.  But let me make it clear.  I love nurses and they work harder than anyone.  It is a job I definitely could not do.  My family is chock full of nurses and I have dozens of nurse friends that love their jobs and it is definitely their calling in life.  My luck, I just got a recovery nurse that was having a bad day.

I was barfing in a bag when I was forced into my car.  Just when rush hour was starting.  I was crying, in pain, vomiting, and had to put a seat belt on.  I know they leaned my seat back.  I remember the painful starting and stopping of street lights.  I remember excruciating turns on the 25 minute ride back home.

Once I got home the searing, stabbing pains started.  Take my breath away, most horrific pain I have ever felt in my life.  And it didn't stop.  Then I started vomiting again.  All over my bed and myself.  Now I had to change my clothes and my sheets.  Not a big deal.  Except it is when you have just had body parts amputated and expanders put in under your chest muscles 3 hours earlier.  Indescribable pain all night long.  I remember crying and not being able to make a sound it hurt so bad.  I was terrified my kids would see me like that and kept asking my husband if they were all right. At least I think I did.  I remember thinking it.  Thank goodness for my mom and husband.  My mom is a nurse and knows what she is doing.  My husband did what she told him.

I kept asking for pain relief.  The only thing that was prescribed to me was a low dose Vicodin.  It did zero for my pain.  At one paint, maybe it was 2 in the morning, or maybe it was just 8 pm, my husband, Clay, wanted to take me to the ER it was that bad.  I refused because I couldn't bear getting in a car or moving.  I also didn't want to wait with a bunch of folks that stopped in because they had a cold.  Or needed to get some Oxies.

Bottom line was it was a horrific experience.  I'm pretty sure it would have been less painful to be chased down and ax- murdered by Chucky, Jason, and Freddy Krueger.  This all could have been avoided if I could have spent the night in a hospital to get my pain and vomiting under control.  Even just one night. 

But the fun didn't stop there.  Morning rolled around and a home health nurse showed up to take my blood pressure.  That's all.  My mom emptied my drains and checked bandages and all that gross stuff that I can't imagine doing without losing my cookies.  Meanwhile I am still in debilitating pain.  And now they tell me I have to get in the car AGAIN to have my plastic surgeon check me.  I lost it and refused to go. I cried.  I physically could not imagine getting in a car and driving 25 minutes to the doctor.  Side note.  I live in Florida.  There are lots of snowbirds here who cannot drive.  There is a multitude of slamming of the breaks while driving in SW Florida because a Crown Victoria cut you off.  So it was going to be a painful ride.  And I knew it.  Somehow they got me into my '05 Ford Expedish.  I don't really remember the ride I was in so much pain.  I know I could barely move and had to be held up as I walked into the office.  I must have looked like a monster because the faces in the front office were shocked.  They put me right into a room.  Where I almost started barfing.  Then sat down on the table and said I was going to pass out.  And I did.  I don't remember anything else about that visit.  All I know is that I was prescribed stronger pain pills.  But now I had to drive home.  I would rather dig my eyeballs out with rusty spoons than have to get in a car and drive again.  But I survived.  

This is a really long post.  And if you've made it this far, THANK YOU!  The message I want to get across is, think twice about being talked into a same-day outpatient mastectomy.  Especially if you are young.  My surgeon said that her younger patients seem to have more pain than the older ones.  It seemed like everyone thought I would do great because I was so young and healthy.  It was not the case.  I regret not having this done in a hospital setting and am scared to have any more surgeries done there.  I am sure that some women have done great with this sort of surgery, and it is a big trend in mastectomy surgeries to go home the same day.  I just want my story out there.  This outpatient "drive-by" surgery is not alway rainbows and kitty cats.  Sometimes it's torture.

Me going into surgery.  Before I knew what I was going to have to go through.  My brother jokingly put this on facebook.  "This surgery is soon to be a distant mammary!  Breast joke ever!"  I said that attempting to keep my spirits up!