First Look

I cannot talk about my surgery and those first days without talking about the "first look"  Now I am not a vain person, I am comfortable in my own skin, and have said during this entire journey "it's just a boob."  With that being said, I was terrified of seeing myself post-mastectomy.  Completely and utterly terrified.  I didn't look when the doctors checked me, because I didn't want to become an emotional blubbering mess in front of them.

The first look came the next day when it was time to get dressed.  With Jay and my mom there I looked, and was completely shocked.  I wasn't shocked by what it looked like, I was shocked at how much it really didn't affect me.  I'm pretty sure I even said aloud "Wow, I am definitely flat"  I really had no feelings neither here nor there about how it looked, which surprised me.

That does not mean it looked beautiful.  I definitely lost my breast (and my nipple because of another mass behind it), and my scar that was previously half the width of my breast was now across three quarters of it.  It looked like something I had never seen before. 

But, at the same time, it looked like hope to ME.  Something that had a high probability to make me sick or kill me was gone.  I had ended one scary ass journey and was beginning one of rebuilding and health.  No matter what I looked like now, I knew it was temporary.  That is what I held on to. 

Early Days Of Recovery

Being stubborn and independent in nature has worked in my favor throughout this journey.  The first few days of recovery was no different.  From the first morning at home, I was determined to do as much as I could by myself.  I did my arm exercises, and by day two at home, I took my inside-laps-around-the-living-room-walk to a walk around a portion of our complex.

Mind you, I was not setting any land speed records, and still was rocking a Trex arm, but everyday was better than the day before.  That became my new motto - today is better than yesterday.  My fingers inched higher on the wall during my wall climbs, the stretches became less painful, and I could get in and our of bed by myself.  It was ugly, but I could do it.

Many of those recovery days were spent having quality time with my Momma.  We watched some of the silliest of show (Lifetime's Devious Maids anyone?!) and I was subjected to her "stories" on a daily basis.  I did not enjoy getting a mastectomy, but I honestly did enjoy getting to spend two plus weeks literally just hanging out with my mom.  We would chat, watch shows, I'd nap, she'd help with my exercises.  We had no agenda, we were just being. Together.  I loved it.  I did feel bad that she was on her "summer vacation" and spent it inside (if there is sun out, my mom usually NEEDS to be in it) and doing a whole lot of nothing.  I was thankful to have her with me during those days while Jay was at work.

I was not where I wanted to be after a couple of days, but I was progressing forward and I had to keep focused on that...

Friendship

I have to take time to mention my wonderful, beautiful, and loving friends.  I cannot discuss my journey without mentioning them.  I have had the pleasure of working side by side with some of the most amazing and inspirational women while teaching.  These women have gone from "colleagues" to friends to family.  Some have left our school, but remain in my heart and life.  When all of this began, I was determined not to discuss it with many, but with this group of women it is pretty hard for any of us to hide anything from each other.  I am happy I let them in, as I do not know where I would be without them.  I also can't forget that I do have other wonderful friends who I know would have stood alongside me as well, and do feel bad that I sort of robbed them of that, but it was what I needed to do.  But I am still sorry..

I will never have the words to express the thanks and appreciation for all of the love, support, and encouragement I got from them.  Before my surgery, I had visits, texts, and calls full of loving and positive words.  The night before my surgery, one called not expecting me to pick up, but I did.  I spent the next 45 min talking and laughing with her.  It was a wonderful distraction.  The morning of, I woke up to encouragement that continued all the way up until I turned my phone off. After my mastectomy, they went above and beyond.  Many nights (starting the night I got home) we had meals, complete with wine and dessert delivered to us.  Everything was so delicious.  It was nice for Jay and my mom not to have to worry about making dinner and could really just have a semi break and enjoy the evenings. I had the most beautiful flowers, cards, and princess pictures surrounding me on a daily basis.  Before my surgery, during a visit, one of my friends told me "you have a lot of us that love you and want to help, you just need to let us know."  Clearly they know me, they know that's not me, and devised a plan.  And for that, I love them even more.

I love these women, I always have, and always will.  

The First Night (Mastectomy Part 4)

The first night was HORRIBLE.  Actually, it was worse than horrible.  Unfortunately, I really only have myself to blame.  Prior to surgery, I really wasn't sure how I was going to sleep once I got home.  All of my blog research had most people sleeping in recliners, so I initially thought that was the plan of action, and Jay even agreed to sleep on the couch so I would be alone.  Well, that is the first place I went when I got home, and NO, not going to happen.  It was so incredibly uncomfortable and painful for me.  The couch was fine for naps and laying about, but I knew it would not happen for nighttime.

One big problem with our bed is the height.  On a good day I need to giddy up a bit to get it.  Clearly there was going to be no giddy up to be had.  Husband to the rescue - he brought home a step ladder, but then even that had a flaw at first.  It was wonderful for sitting down on the bed, but attempting to lay down had be in pain and on the verge of tears.  So, he stepped in and helped me lower myself with the least amount of pain.  We bought a pregnancy pillow that could be unvelcroed and assembled in various ways, so we made a big U with it and I was enveloped in pillows and couldn't roll over if I wanted to.  Great! Took pain meds, and good night!

Throughout all of these surgeries, I have tried to limit my use of pain pills.  Normally I would take them before bed and then wait to retake them until the morning.  Well...I woke up and was in pain, but thought "ahh, Ill just go back to sleep" I woke up again and was in even more pain and really had to go to the bathroom.  What to do? What to do?  I can't get out of bed alone, and really didn't want to wake Jay.  So, I lay there a little longer, then I couldn't wait.  While stifling sobs, I begin to poke Jay (this is all I can do, sadly) and call his name,  He finally wakes up and agrees to help me up and to the bathroom.

I do not think I have cried that hard since I was a baby.  I was in SO MUCH pain!  At one point, while trying to sit in the bathroom, I momentarily threw up the white flag.  I told him I couldn't do it.  At that moment I was so discouraged and scared that this was my future now - lots of pain and no independence.  Thankfully my husband is wonderful and knows me.  He snapped me out of it and I was put on notice that an alarm would be set and from now on during the night I would not be going 12+ hours between meds.  Of course I happily agreed to this plan.

After that, and once the meds kicked in, I was back to sleep and was fine.

Trying To Go Home (Mastectomy Part 3)

 

The morning after my mastectomy was one filled with anxiety and dread for me.  I had one goal - to get released and get home ASAP!  I also knew their were hoops I would need to jump through to get that to happen, and that is were the anxiety and dread came in.

Two tasks I had to complete was to sit in a chair for an extended amount of time, and to walk around the wing of the hospital several times.  Both of these tasks scared me quite frankly.  The pain I felt when I went to the restroom was enough for me to want to be wrapped in a swaddle and not be forced to move for a month.  However, my urge to be on my couch (and in clothing that had a backside) was greater.  So, I got my breakfast ordered (I had to keep down food as well) and ate most of it.  I was shocked at how edible it was, and the choices I had.  I ordered OJ as well...that would come back to haunt me later.  

Once I ate, I was ready to tackle the walking thing - I figured the sooner I got that done, the sooner I could get outta there.  So, with my Mom on one side and another kind and caring nurse, I began my walk.  I didn't want to do my sloth shuffle, I wanted to really walk.  Again, I am stubborn and REALLY wanted to go home.  So we walked, slowly, but we walked and talked.  The kind nurse asked what my major was.  Kind, but I'm positive that I do not look college age.

After that, I sat in the chair, and that was no fun.  It wasn't a comfy chair (I do not know how my husband "slept" in it) and had me sitting in a way that induced more pain.  Well, I got nauseous and when asking the nurse for a bucket she at first refused to give it to me and wanted me to smell an alcohol pad (by the time she got it out I was fine) which, of course, annoyed the hell out of me.  

All of my doctors came by and checked on me and gave me the thumbs up to head out.  Awesome! Nurse said they would start my discharge process.  That was around 11:30.  Well...I got nauseous again, and this time I threw up.  Now, I HATE throwing up.  I hated it even more this time, because I was sure it would set me back in the discharge process, which it would have if my oncologist was not practical.  I felt fine after and we discussed the OJ and its probable involvement.  Still...I had to now order and eat some lunch.  So I did...and it stayed down.

Once Jay got to the hospital, the nurse gave all 3 of us the tutorial on how to care for my drains and showed me my arm and chest exercises I would need to do 3 times a day.  I was so sad and frustrated by the lack of motion and what seemed like strength in my Trex arm.  

Next it was time to get dressed! Wahoo!! One more step closer to getting home.  That did not go smoothly.  We (and yes, it was all hands on deck at this point) went to put on my surgical bra.  I had one the week before - It had velcro along the front for closing and is pretty self explanatory and painless..most of the time.  Once we began trying to close it I felt like I was being crushed and put the breaks on it.  It felt so tight and small.  So, we take it off and realize that it is a medium.  A MEDIUM!  I know I just had one of my breasts removed, but I do not think that I magically now wear a Medium.  At this point, I am told that my plastic surgeon stayed with me in recovery for a while (and had the surgical bra removed) because my drains were filling up scary fast.  Well duh! How did they even get me in that medium in the first place?!  We ask the nurse for the correct size and then wait...

Between the bra, the prescription  for physical therapy, and lord knows what else...we waited for hours! I became THAT patient - calling, buzzing, reminding them I needed to be discharged.  I put in my order for my wheelchair, they tell me its coming, and Jay goes to get the car.  After waiting even more, I walk out to the nurses station and ask where the wheel chair is.  She tells me that its been ordered and is on its way but not close.  So then I ask if I can walk out and she says fine, so I begin out.  I'm not sure how my mom actually felt about this, but she knew I wanted out and she is fully aware of how stubborn her daughter is.  

Finally, I walk downstairs, get in the car and am on my way home -- all I have wanted since the day before.  Much of the rest of the afternoon I do not remember, because most of it consisted of me being in and out of sleep on the couch.

Waking up...My Mastectomy Surgery (Part 2)

Waking up after this surgery was more difficult than the others.  There were moments of fogginess, where I wanted to wake up and wanted to see my family, but just couldn't.  In one of these moments of fogginess, I remember hearing the concerned voice of my PS, and feel people removing compression from my chest, but then I was out again.  When I finally came to, I was back in the cattle call room and Jay and my mom were there.  That was all I wanted, to see them and to know it was done.

I was in the cattle call room for awhile, and boy was that interesting - you could hear everything about everyone around you.  The guy next to me kept saying he was dying, until the nurse had to tell him that in recovery we don't joke around about that.  Finally they told me I would be going to my room (in the cancer tower) and that both Jay and my mom could stay.  Yay!

As I was getting wheeled through the underground tunnel to the tower I remember being a lil in and out of it, but still with it to be the only person in the conversation to remember times and room numbers that were discussed in recovery.  Go me and that mental alertness!  I kept picking on Jay and my mom about that one.

When we got to my room I met my two very kind nurses.  One was a cancer survivor herself, and had a double mastectomy a couple of years before.  She was so helpful and informative over the night and into the next day.

I remember being so afraid to move.  I didn't want to move because I did not want to be in pain.  Like only wanted to move my head, type of not want to move.  I was also afraid to look at my drains at first.  I still vividly remember my Dad's drain in his leg and how much it scared me, and thought it would be that way again.  I had held up pretty well, at least in my opinion, throughout this journey, but was afraid that I wouldn't be able to keep it together if I was in pain or saw that drain.

My room was nice.  There was a fold out little couch and a chair and a TV with a DVD player.  My mom was sad my dad didn't have rooms like this one all the times he had chemo.  She took pictures and sent them to him - he was jealous :)  By this time it was well past 9 at night.  I got to talk to my dad and Kods, which was nice.  Jay left to get some food for him and my mom and also got me some things and some DVDs.  (He brought me back Despicable Me!!)

I was tired, and really just wanted to sleep.  All of my Drs. came by to check on me and make sure I had everything I needed, and then my hourly checks began.  Until about 3 in the morning, the nurse came in to check my blood pressure and my temperature.  It was quite annoying, but necessary I know.

I chose to begin the oral meds as soon as I got to the room, because I wanted to get used to how I would feel once I left, and not be blindsided by the pain once home.  The nurse looked at me a little oddly when I chose the oral meds, but hey, that's how I roll :)

Finally I had to move, I had to go to the bathroom.  I wanted to do it on my own, even though I had 3 eager and willing people there ready to support me.  I shuffled (vveerryy slowly shuffled) to the bathroom and was shocked at how difficult it was to actually sit down.  It hurt.  A lot.  I could not believe it.  Not to mention, the range of motion in my right arm was non existent.  It was rather exhausting just to use the restroom, but I was still determined to do everything with as little support as possible. Yes, I am stubborn, but let's all not act like that is a surprise to anyone who knows me.

Once again, I love my husband.  He slept in a chair so my mom could have the mini bed, and he pulled it right up next to my bed so he could lay right next to me, without hurting me in anyway.  He had to work for a couple of hours the next day, but stayed with me until he had to absolutely leave.  So much so, that one of nurses (who knew when he had to be at work) came in to double check that he was up and asked when he was leaving.

He left early the next morning, and I slept a little longer, and then began one of the more frustrating days of my life..

Fighting Like Hell...My Mastectomy Surgery (Part I)

The day was finally here - Mastectomy Day.  I woke up ready to go, ready to fight for my health and my future.  I also woke up to a lot of love and support.  My phone was buzzing all morning with encouraging text messages from friends and family.  I can honestly say I was not scared or sad, I was ready.  Those messages made me even more ready.

Jay and my mom were so great helping me get everything ready to go.  My mom gave me her Alex and Ani anchor bracelet that morning, which really touched me.  I recently told her that I wanted an anchor tattoo and that anchors now meant a lot to me.  (In the beginning of my journey I saw a picture of an anchor with a quote saying "I will not sink" and held that close to me the entire journey)  I wore the bracelet all the way until I had to change, and then had her wear it for me.

As we left the house, Jay looked at me very seriously and asked if I was ready.  I told him "Yes! Let's go get this done.   Team healthy!"  He just kinda looked at me, then smiled and hugged me.  I can say that I surprised myself with my attitude,  but really, how else could I be?

We got to Shands, and checked in and sat in a room full of people (and lots of children)  We waited for over an hour and a half.  I am not a fan of waiting, but especially not when I was not allowed to eat or drink past midnight, and was now STARVING!  When I was called, it was like a cattle call - 5 patients and their families are ushered down the hall and up an elevator, to one big room of beds and curtains.  This was nothing like all of my other preops and kind of freaked me out, to be honest.

Preop again was filled with lots of people, signing, and stats.  The same nurse who jacked up my IV showed up again, and we all just exchanged knowing looks.  This time was no different, he had his issues, but oh well...

Every person that came I kept asking if I was staying overnight (My PS wasn't sure ahead of time) and most could not give me a definitive answer.  THAT was my biggest concern of the day.  Yes, I know that may seem weird.  I have never been admitted to a hospital, and also did not want to spend the night alone.  I wanted to be with my family, so I was hoping I could go home.  Finally, I got "Yes, you will be staying" by my oncologist and I responded with a very loud "shit"  Luckily, my Dr is awesome and said she was going to push really hard to get me admitted to the Cancer tower because it was much nicer, and my family could stay. (Even more of a reason to love her)

Speaking of that, come to find out that the only surgery that initially got in the books was my PS placing the tissue expander, which was why I had such a late check in time and why I was in the main hospital and not the nice Cancer tower.  Once again, my oncologist stepped in and got things straightened out.

My PS came in again, and drew all over me, while we joked that I would have one of the most unique "what I did over summer break" essays come back to school.  This is why I love my doctors - even in totally awkward situations they get me and my personality and treat me the way I want to be treated.  I cannot say enough great things about them.

After that, we met my anesthesiologist - Dr. Dreamy - as my mom and I call him.  He was way cute and referred to all of my meds as my margaritas.  Cute and knows my drink of choice?! Too bad I didn't get to see much of him, because he was just to damn good at his job :)

Finally, it was time to get rolling.  It was game time, and oddly, I couldn't wait.  I could see the look of concern on both Jay and my mom's faces, and I really wanted to tell them it was okay, but would they really believe me?  I told them I'd see them soon and was off...

Gearing up...

So, I had less than a week between my 3rd surgery and my mastectomy, and honestly, I am thrilled it wasn't any longer.  I was ready.  Actually, I had been ready.  I was tired of the waiting until this to decide that, and was tired of living from appointment to appointment.  I wanted to get it done and begin moving on in the recovery process, both physically and mentally.

I had my final meetings with both of my doctors, and was once again so very thankful to be in their hands.  Both sat with me and explained every step of the process and what my options were and helped me devise a plan.  The biggest planning took place with my plastic surgeon.  Initially, I was very against being reconstructed with implants.  I did not want something foreign in my body, and I did not want to have to maintain it every 10 yrs or so.  Well....when he laid out the specifics of the plans and the recovery time, my mind was blown (and changed instantly)  Although the implants would require more surgery, and would be a longer process, it was ultimately the right choice for me and where I am in my life.

Being the planner that I am, I began to ready my life for the days and weeks that were to come after my mastectomy.  My mom was already coming back for a few days regardless of what the surgery would be, but after talking to my PS I called and asked if she could stay longer.  Being as wonderful as she is, she said yes, and my just as wonderful father kept moving her flight dates to accommodate my needs.  I started researching and thinking about things that would make my life easier (and those around me), and began buying.  I am soo happy I did this!  (I am planning a post about things I could NOT live without later)

I was not particularly scared or freaked out about the surgery, but was a little hesitant about when I would leave the house after and  how to look normal.  I was worried about the drains and worried about being lopsided.  Not overly worried, but still worried.  After some research, I found out that there are camisoles made for mastectomy patients that have pockets for drains and pockets for pads to be placed to "even" you out.  After even more research, I found out that there was a store in town that sells them and other breast cancer (and pregnancy) needs.

I went to the store ready to purchase two of these camisoles.  The woman at the store was so kind and helpful!  She tells me that usually insurance covers it, but it takes a day for the paperwork.  I was having my surgery the next day, but knew I prob wouldn't wear it that day so I figured why not try to get it covered.  She helped me get fitted and said she would hold them for me.

Well...then the breast coordinator called me later that day and proceeded to lecture me that she got the request, but didn't think it would be covered because I didn't have breast cancer.  She spent a great deal of time telling me (nice and slow) "You are getting a mastectomy, but not because you have cancer.  You do know you do not have cancer correct?"  Um, yes, thanks lady.  I know I do not have cancer at the moment, but I am not getting a mastectomy because I have nothing better to do on a Thursday! I have no choice, thank you very much.  She also kept complaining that she didn't have a code for me, so she was going to have to figure out what to code it.  Not my problem lady.  After many strong words, I finally convinced her to at least attempt to send it in.  If I had to pay for them, fine, but doesn't hurt to try.  (And by the way - insurance covered them 100%)

I also received no call about preop labs and check in time, so I call to clarify and get my bff Mrs.You-know-you-don't-have cancer breast coordinator, who tells me she does not have me on the books as having surgery the next day.  Umm..look again, its happening, and has been planned since June.  After waiting, she finally gets it cleared up and tells me to come in at 11:00 the next day at the main hospital. 

With everything in place, off to bed I went ready to take on the next day (and surgery).