Drains

OK. So plain and simple, the drains are the worst part of the whole experience.  First of all, they are gross.  They start off looking like there is just fruit punch in there, but they get nastier.  They have to be cleaned out at least twice a day, depending on how much you are draining.  

So they are plastic tubes coming out of your body.  I had one on each side.  Each tube feeds into a plastic bulb.  The bulbs are what needs to be emptied out.  If you don't empty them it will leak all over you.  But because there is body fluid coming out, you have to make sure nothing gets clogged in the tubes.  The nurses taught me how to "milk" the drains.  It was hard at first, when I couldn't move too well, but after a couple of days, it was pretty easy.  They also had my log the amount of fluid each time I emptied them so that we would know when we could take the drains out.  That was frustrating for me because they told me that I could have them removed when the amount was under 20 in each side over a 24 hour period of time.  Well, it seemed like that would never happen.  It was very depressing to go in to empty them and see the bulb very filled.  It did decrease every day, but not as quickly as I would have hoped.

And I looked online for other people's stories with the drains.  Not the best idea.  There are posts from people who had the drains in for months.  The problem with the drains is that on top of the fact that I had no breasts except nasty looking scars, I had these 2 big bulbs to deal with.  I didn't want to go anywhere because I didn't know how to hide it all.  I was very self conscious.  

Looking back now I realize that I only had to deal with the drains for about 10 days.  The first few days I was not interested in leaving the house anyway.  So it was a week of torture.  Honestly, that's not so bad.

Home from the hospital

Well, it was great to get home.  I was sore and tired and it was hard to get comfortable. I had no problem just laying around the whole day.  Sleep was something I wasn't looking forward to because I couldn't imagine how I would get comfortable.  My husband is the best and he slept downstairs so I could just use all the pillows to pretty much sit up and sleep. He brought up the zero gravity chair from the outside deck and put soft blankets and pillows on it.  We set up a snack table and I was all set.  It's definitely something I didn't plan to deal with, so I would recommend looking into comfortable ways to sleep if you have a mastectomy.  I learned after the fact that they sell sleeping pillows and things, which I would have bought if I had known.  

They sent me home with a lot of pain meds, but I found I didn't really need them after the first couple of days.  I just took ibuprofen when I went to bed for a while. 

It actually wasn't really so bad as long as I rested.  That's hard for me.  But it was also hard to just get up and move too much, so I watched a lot of Netflix and played online alot.  I would suggest making sure you have things to do.  If you like to read, make sure you have a lot of books.  If you like to watch TV and movies, have everything handy.

Days when I tried to do too much definitely made me tired and the next day I couldn't do a whole lot at all.  So, my suggestion is to rest rest rest.

recovery

I had a private room at the end of the hall.  My surgeon said it was like the penthouse suite.  I was pretty out of it for that night.  Pain meds were good but they made me so sleepy.   I couldn't even visit with Paul and the girls.  I had some pretty good nausea from the anesthesia.  They have an amazing pill that makes it go away though.  So it was a tough night.  Trying to get comfortable wasn't easy and then when I was finally asleep either someone came in the check me or the IV machine would start to beep.  At least 3 different nurses came in to try to fix it but it would just keep happening until finally at about 8am they decided I didn't need the fluids anymore.  I felt ok, but groggy.  

At about 10am two really young nurses came in and taught me how to care for my drains.  Yup, drains...I kind of forgot that I would have them.  I hadn't read anything about the procedure before hand because I was avoiding thinking about it, so it was all new to me.  The drains were these tubes that literally came right out of my body, under my armpit.  They drained fluid into these plastic bulbs that were safety pinned to my beautiful hospital gown.  I had to "milk" them 3 times a day to make sure that they were flowing right and then I would have to empty the bulbs regularly and keep track of how much fluid came out each time.  When the fluid dropped to 20 cc's in 24 hours they would take them out.  They said it would be between a week and 10 days.  The nurses then gave me two "camisoles" to wear.  They had pockets on the inside to put the drains and bulbs into.  It was better than safety pins at least.  

Then Dr. Krieinberg came in to check me.   It was nice to see her.  Paul came and we waited for discharge, which takes forever.  Poor guy had to wait there for a while. By the way, I tried to eat dinner and breakfast, but yuck !!!  Even the coffee was nasty.  When I was finally discharged I made Paul bring me right to Dunkin Donuts for a coffee !!!  Getting into the car wasn't easy.  But I did it and got home around noon.

Surgery Part 1

In order to start the process for my prophylactic mastectomy I had to first meet with Dr. Suzanne Kreienberg, a general surgeon.  She was wonderful.  My husband came to the appointment with me.  She went over everything thoroughly and in layman's terms.  Next step was to meet with the plastic surgeon, Dr. Debbie Kennedy.  Again, a wonderful experience.  In the spring I called to ask for the surgery date, so we came up with September 19th.  

I really tried not to think about it all and I did a pretty good job of that.  Surgery was set for 10am on a Friday, so I worked through Thursday and attended a community meeting that evening so my mind was occupied.  

Got to the hospital and I know my father was with me.  The receptionist checking people in was someone I knew.  She said she never works there but they needed someone to fill in.  Anyway, seeing a familiar face relaxed me.  Filled out tons of paperwork and then they took me into the pre-op bay.  Paul had to stay in the waiting room for a while which I didn't like.  Anyway, my favorite numbers have always been 8 and 18.  I was put into bay 18.  I took that as a sign.  Both surgeons came in to talk to me as well as a wonderful nurse.  Paul came in while we were with Dr. Kennedy and so we talked for quite some time.  Then the anesthesiologist came in and gave me a valium like medicine which relaxed me.  Thank goodness because I was starting to want to just leave and forget the whole thing.  Then they wheeled me away and I said goodbye to Paul.  I remember laying in the OR looking around at all of the lights and machines and wondering where the doctors all were.  Next thing I knew I heard a woman's voice calling my name.  I was in recovery in bay #8.  Crazy!!!  She said everything went well and they brought me to my room.  Paul came in.  It was only 1pm.  Everything went faster than we thought.

First blog ever part II

So, in addition to the ovary removal, I also had to go every 6 months to have either a mammogram or a breast MRI.  Mammos are not an issue for me...they aren't uncomfortable, etc.  But I hated the MRI's.  They are long and boring and just overall not fun at all.  I decided I would do this until I couldn't take it anymore and then I would have a mastectomy.  I also wanted to lose 20 lbs.  So this went on for about 3 years.  All the tests always came back fine.

In Nov. 2013 my world changed.  My father was diagnosed with colon cancer that spread to his liver.  He began treatment and was scheduled for surgery over the summer.  Again, a different blog for that.  But it brought the topic of my mastectomy back up again.  He passed away that September.  

My ob/gyn contacted me to see how I was doing with the genetic issue.  A good friend was diagnosed with breast cancer and then my mammogram showed something they wanted to look at more closely.  It turned out to be nothing, but it was like someone was trying to tell me something, maybe my dad !!!  So, I went in for my annual exam and told my NP that I wanted to go ahead with it.  She gave me the names of surgeons and then I contacted a woman in my school district who had the same surgeries and she used those same surgeons.  This person has been incredibly helpful to me throughout this adventure.  

Next blog will be all about the surgery, pre, during and post.

First blog ever !! part 1

I never thought I would start a blog.  But I've noticed myself reading other people's blogs very often lately and they have been very helpful to me for so many reasons, so why not start my own.   Hopefully I can help someone.

A bunch of years ago, I have no idea how long ago, my mother was diagnosed with breast cancer.  Not a surprise though because her mom had it and had a double mastectomy. Mom opted for a lumpectomy and did fine...until the second diagnosis.  At that point she had a double mastectomy, no reconstruction though.  She was also tested for the BRCA genes and of course she had one.  She tormented me for a long time to get tested myself.  I knew I had to go and do it but I also knew it would mean many big decisions for me and I wasn't ready for that.  But then I started hearing about many people that I adore becoming diagnosed with the horrible illness so I went for the testing.

The doctor that worked with me was incredible.  She really seemed to understand everything going on in my mind.  Well of course I tested positive for the gene or I wouldn't be here blogging about it.  Again, I wasn't surprised but very sad and worried.  She recommended that I have my ovaries removed first, an oophorectomy because it would lower my risk and its a good start.  So I got right on that.  That was an easy decision.  I knew I didn't want to have anymore children.  I was about 42 at that time.  I had only two concerns with it   I would go into immediate menapause and that was scary to me since I had seen others have a difficult time with that.  I was also very concerned about missing work for 3 weeks...silly, I know.  But I went ahead and had it done and it went perfectly.  I felt great after 2 weeks.  Menapause wasn't bad, similar to how my mom's went.  Just bad night sweats and a lot of sweating if I had alcohol.  But it lasted a few months and then never again.  I think my thyroid got messed up around then though, but that's another story. But, no more menstrual cycle.  Jackpot !!!