Reflecting

It's New Year's Eve.  The ending of a year, and while my journey is not finished, I do feel like I am in the home stretch.  This journey, although I would not wish it on anyone else, has taught me a lot:

1.  Even in the darkest of times, there is at least one thing you can be grateful for.  This is something that on a daily basis I wasn't always good at during this journey, but I got better at it.  No matter how rough you may have it, there are people who have it far worse.  Find something, anything, each day and be grateful.

2.  It's NOT that serious...seriously...something like this will really put things into perspective for you.  I have learned to be better (I am a work in progress) at not sweating the "small stuff." 

3.  Surround yourself with people who will bring positivity into your life.  I am SO LUCKY.  I have amazing family members and wonderful friends.  I knew this before.  It was confirmed throughout this process.  I have really realized who is truly there for me and not what they can get from me.  I have eliminated some people from my life and strengthened other relationships based off of this.  Life is too short to waste time and energy on people who don;t have true intentions.

4.  Make memories!  Tomorrow is not guaranteed for any of us.  Take the time to make the most of your days and make those memories. 

5.  I am stronger than I ever imagined I was.  You never know how strong you are until you need to be - no truer words have been spoken.  I have surprised myself both physically and mentally.  Had you told me a year ago that I would be sitting here today and had gone through all that I did, I would have rolled my eyes and laughed, all while making a sarcastic comment.  

6.  Finally, I am so blessed.  Sure, I have been on one hell of a rollercoaster, and one that is not yet finished, but I am a better person because of it.  Yes, I have many scars (inside and out), they are not pretty, and they are going to be with me forever.  But they are mine.  They are my journey. You have to take the good with the bad right?! 

My Other Half

 

There is no way I can talk about my journey, without mentioning my husband.  I love my husband.  If there were a word greater than love I would feel that.  From the day I met him in high school, I knew he was an amazing guy.  I didn't know that I would have the privilege of being married to that amazing guy, however.   He has ALWAYS been loving and supportive, but I never knew the lengths of that love and support...

He has been my rock.  He has kept all of my pieces together when I wanted to break into a million of them.  He has anticipated my needs and filled them, even when I was not sure myself what it was I needed.  He has stopped what he is doing to help me in any way, even if it meant driving back home to do so.  Waking up early so he could help me get dressed (without being asked), doing my hair, washing my hair or aiding in showering (for 7 weeks, nonetheless), stripping and emptying drains, being my favorite nurse...the list could go on for pages.

He did this all with unconditional kindness and love.  Never once did he make me feel like I was a burden - even when I had to wake him in the middle of the night to help me get out of bed and to the bathroom when he would have to be up and at work in a few short hours.  There were days when I would apologize for being so needy and he would just hug me.  

He has been at every doctor's appointment (minus maybe 1 or 2) - no matter how minor - and has rearranged his schedule without asking to be sure he was.  He held my hand when I needed it, or made faces if I needed lightening up.

I never had to face anything alone.  He was always by my side.  I will never have the words to truly express what he has been to me this year or to thank him for being so selfless and loving.  I do know that I couldn't have done it without him and that I love him, more and more each day.

Recovering...Again..

Ugh.  That's how I feel about recovering..AGAIN.  I don't do well with not being independent, and the more I do it, the less patience I have for it.  Also, I really did not anticipate how much pain I was going to be in on my reduction side.  My implant side instantly felt better because it wasn't hard as a rock, but was still sore.  I can handle sore.  My reduction and lift side?! HOLY CRAP!  Talk about feeling like you got hit by a truck! No fun. 

On Thursday, I had an appointment with my PS to check on everything.  I did NOT feel like going, but put on my zip up hoodie and shuffled my way in there.  My PA came in, took off the surgical bra, removed all of the gauze and lit up.  She smiled, clapped, and kept gushing that "they look SO good!"  She asked if I thought they looked good.  I just looked at her - A) I have not ventured to look at them yet and B) You are an expert - if you are excited, I am excited.  She told me she was so excited for me, and I take that as a win.  Jay later said how it was as if she was the one with the new boobs.  Lol, gotta love her.

I still wasn't in the mood to look, so I didn't ask for the mirror.  On the way home, while telling Jay I felt like a semi truck had hit me in the chest, he told me that my reduction/lift side looked like I had attempted to stop a truck with my boob.  Yep..sounds about right.

The next day, when it was time to shower I caught a glimpse of that side in the mirror and wanted to throw up.  It was swollen and every.single.color.of.the.rainbow.  Who knew one could bruise in so many colors?!  The steri strip tape covering my incisions was all over.  My incision is an in the shape of an anchor - around my nipple, straight down, and then underneath the entire boob.  The left side of the bottom incision is halfway to my armpit.  I also had a decent size blood blister that doesn't make for easy viewing either.  Once again, I had to remind myself that it is only temporary.

Being that Christmas fell during my recovery (thankfully because I do not think that my original plan of a week and a half off (when my PS told me at least 2 full weeks) would have been enough) we visited family.  Even days off just being up and running a few errands really exhausted me.  I stopped the pain meds after about a week, but was still uncomfortable and occasionally had spasms that would stop me in my tracks.

After Christmas, I had yet another appointment with my PA.  She was still very complimentary about how everything looked and was still excited for me.  She then said she was going to help some of the steri strips come off, and then proceeded to take them all off.  Shockingly, once she took off the steri strips, my incisions looked less scary.  Don't get me wrong, they still aren't beautiful, but they did not look as bad as I had envisioned.

She prescribed me a cream that is usually used on burn victims for the area were my blood blister was, and then told me I had to come back to get the few non dissolvable stitches removed.  Oh joy!

Exchange and "Update" (Surgery #5)

After a couple of reschedules, the date was set - Dec. 10.  I would have to take 9 days off of work, which gave me tons of anxiety, but I was ready to get this surgery done and over with.  The surgery would take place at the main Shands, which meant I'd be back in the main cattle call that is pre op there.  Not my idea of fun, but once again..let's get this over with.

In pre op, the usual activities occurred and I met my "team."  Once again, I kept asking "Do I have to stay overnight?!"  Everyone kept deferring to my PS.  When I asked him, he first shook his head (because I am sure he knew it was coming) and then told me he couldn't tell me a definitive yes or no.  It all depended on what time the surgery ended, if I had a drain, etc.  NOT the answer I was looking for, but oh well.  He also told me he had just found out that my implant he ordered for me was not at Shands because of the weather in the Northeast, but had secured me one very similar.  No stress - I trust him and didn't even know what the missing one was anyways. 

Next came the part that I always find myself laughing about at some point - the drawing and pictures.  Before every surgery with him, my PS takes out his handy blue marker, measuring tape, and various tools, and turns my chest into a Pictionary game.  He commented that this would be our last "drawing session" and reminisced on our conversations the first time.  He was also explaining a lot because he had a resident surgeon with him.  He again brought up the length of my scar due to "previous surgeries at an outside institution" and how he wishes he could fix them for me.  Once again, I reminded him that it didn't matter to me.  After the blue marker explosion on my chest, we took the pictures and then it was pretty much go time.  

Got into the OR and got introduced to the remaining members of my team, and got to finally see my PS in scrubs! I had only ever seen him in a suit and tie before.  The head anesthesiologist came in and asked for the diagnosis.  Without a hesitation, my PS said "Breast Cancer."  My face must have given me away, because he quickly grabbed my hand and said "but it is all gone now.  We are just finishing up the journey."

He continued to hold my hand until the anesthesia kicked in.

When I came to, I was in recovery and my Jay was there smiling at me. Eating Flips.  Yep.  That's my husband.  Wouldn't expect it any other way :)  I very quickly asked "Am I staying?" and Jay nodded his head.  He also told me that when my PS told him that he asked him if he would tell me.  My PS quickly said "No, sorry...I have an appointment." Makes me laugh because I can totally see this conversation taking place.  I also had an oxygen tube in my nose.  This was a first for me, and honestly freaked me out a little.

For hours, they kept telling me they were trying to find me a room.  Around 11, my nurse got me an actual bed, which made a huge difference.  They also told me they got word that there would possibly be a room at some point.  Around 11:30, my night nurse came.  She was WONDERFUL.  She didn't seem to think I would be getting a room anytime soon, and I was the only one still in there, so she went to the discharge section and got a recliner for Jay to sleep in.  She also turned all of the lights out and I even heard her at some point shushing people.  She even turned down my monitors so the beeping wouldn't keep me up.  She believed that sleep was the most important thing for healing and made sure that I would get enough.  So yes, I had to sleep in recovery, my Nurse Jackie made it as comfortable as possible for me and I will love her forever for that.

The next morning, my PS stuck his head around the curtain and asked if I wanted to hit him for making me stay the night, and in the recovery room nonetheless.  I told him of course not, but was still not happy about it.  He checked me out and said all looked good.  He also said he would start working on getting me out by mid morning.  I wish my morning nurse was on the same page.  She was awful. And Lazy.  She seemed more interested in cleaning and organizing then actually helping.  I even heard other nurses snapping at her for essentially being in the way.  After her telling us she was doing one thing, and then sitting and waiting...and waiting...Jay finally snapped into "Mr." mode and lit a fire under her.

Soon I had a man from plastics down to pull my drain.  Yes, I had another drain, but thankfully not long enough to even name it.  After him, I had another lovely nurse who was amazing at moving along my discharge process so that I could get home.  What a difference a nice and competent nurse makes!

The next step was in the car, home, and on the couch.  Boy was I happy to be in my yoga pants and on my own couch!

Cancer.

Cancer.  Six little letters that when arranged in a certain order fill me with hate.  I hate cancer (not that I think many people like it).  I watched my dad battle it like hell when I was in high school and watched what it did to him.  It's awful and terrible. 

Throughout all of this, I have felt sort of in a grey area.  I've had people ask, did/do you have cancer and I always answer "no."  But my tumor was borderline, and aggressive enough that I had to have a mastectomy.  It wasn't completely benign, but also wasn't completely malignant.  But, I liked to live in the lollipops and unicorns world of "No."

Well... the Tuesday before Thanksgiving, Kods went with me for my preop labs.  Something happened during that appointment that I don't think I will soon forget.  After waiting for HOURS to be called back, I went back for the standard tests - weight, height, bp etc.  While watching the woman type in my numbers in the computer, there it was in black and white all caps, under diagnosis - CANCER. 

I almost threw up all over her.  I was numb and quite honestly do not remember most of the remaining portions of the appointment. 

Cancer.  On my medical history. In black and white.  I am logical enough to realize that it was definitely a possibility, and that the appropriate steps were taken, but I still have odd and confused feelings about seeing it on that screen.

I make plans to shelve it for now and will make plans to discuss it with my Oncologist at my 6 month appointment in January.

Until then, Cancer - I still hate you.

Dealing with the Wrench..My Way

So, I had begun to entertain the idea of having the reduction and lift.  I did a lot of soul searching and thinking, and to be honest, staring at my hard as a rock "foob" in the mirror.  However, I was not entertaining the idea of having yet another surgery and prolonging the process any further.  There were discussions to be had.

I got to the size I felt was a good size by my first appointment of Oct., so it was time for the discussion.  My PA came in and asked me what I had decided.  I told her I was going to do the reduction, but wanted it done in the same surgery.  She then talked me through what my PS reaction (and following discussion) would be.  She then had to leave to deal with another patient.

Next, my PS and another PA walked in.  The PA expanded me (you have to be overfilled once you hit your ideal size) and then came the discussion I had been waiting for.  As predicted, my PS rreeaallyy wanted (and lobbied hardcore for) the two surgery approach.  I love my PS, but he is definitely a perfectionist.  He really wanted to do my exchange surgery (taking out my tissue expander and replacing it with my implant) first, and then let it settle for some time.  After that, he would then do the reduction and left to "near perfectly" match the other side.   I'm a logical person, I understand his viewpoint and the advantages to that approach.  However, I'm also the person who has and is going through this process.  At some point in the conversation, I looked my PS in the eye and said "Please.  I am tired.  I really just want to close this chapter and move on to the next chapter in my life."  At that point, he gave me his kind smile and agreed.  We started discussing scheduling.

Once again, I had a plan.  Once again, the plan got thrown a curveball.  My plan was to schedule the surgery my surgery for mid week before Thanksgiving.  My idea was then that I would only have to take half a week off because we had the entire week of Thanksgiving off.  Well..no go.  My PS was at a conference that week.  So, we discussed doing it the Tuesday before Thanksgiving.  I thought, okay, same idea, just back a week.  He ended the conversation by telling me to schedule it with his secretary.

That left the PA with me to discuss getting ready for the surgery.  Before she left, I asked how many more times I needed to be overfilled.  "This was it! You're done!"  she cheerfully responded.  Say what?! That was it??  Oddly, I was a little let down.  It seemed to "end" unceremoniously, without me realizing it.  I was also a little bummed because it had ended without my usual PA, who had been there every step of the way with me. 

So, I was done with the expansions.  Now I just had to "be" for the next month and some change.  I could handle that..

Being thrown a wrench

Going into my expansions, I had a plan.  My plan was to get my right side as close as possible to my left side and then get the implant.  One surgery, one side.  After 4 surgeries already, I really wanted only one more and with the least amount as work as possible.  Well, like with all great plans - I got thrown a wrench.

At one of my expansion appointments my PA decided that I should "check in" with my PS and discuss the long range goals again.  At this point, he discussed the pros and cons to my plan.  Kept reminding me that I am "so young" (I guess in comparison to his usual patient, but hey I'll take it) and really need to think long term.  His suggestion (which was also my oncologist a week after my mastectomy)  was to find a size in the expansion process that I was comfortable with and then we could reduce and lift the left size to match.  In his ideal world this would be done in two surgeries with a couple months between them.

This discussion deflated me.  I felt like I had been hit in the stomach.  I had pep talked myself up for the current process and had a finish line in sight, this changed all of that.  I promised to think about it and left the office.

That night was spent over analyzing and rehashing the discussion with Jay.  Once I took the emotion out of it, it seemed the logical decision in the long run. 

Now the biggest question I had -- how do you pick out your boobs?!  During a rant while talking to my mom, she jokingly suggested asking my PS for a catalog.  At some point, I actually considered it. :)

Going Back To Work

Going back to work was something I had anxiety about.  My goal was to have my 2nd drain out before I went back so that I could at least "look" normal on the outside, no matter how I felt.  Well, that didn't happen.  I was also anxious about how I would get everything done, while still keeping true to my current restrictions. 

There were a couple of things that made my going back easier.  First, my boss allowed me to get in my room the week before.  Every day, once Jay got off of work, we would go over to school for a couple of hours and knock off items on my to do list.  I'm not going to lie, I didn't do much outside of point and move the occasional light pile, but I would be EXHAUSTED by the end of a couple of hours.  Thanks to the hard work of my husband, my room was pretty well set up before preplanning even started.

Also, I decided to post the beginning posts of my blog before we went back to school.  I started blogging then, because I felt in a good mind frame to do it, but it also was good timing with school.  It let many of my school friends know what was going on without me really having to talk about it. 

I didn't sleep much the night before the first day of preplanning.  I had spent some time picking out an outfit for grade level pictures so that I wouldn't look weird with my drain, but still had soo many things running through my head.  It was all for nothing.  My first day back was so nice.  It was nice to see many of my friends and it was incredibly nice to feel all of the love they shared with me.  Many warm hugs, knowing smiles, and pop ins to my room to check on me.  It was also nice to have other things to focus my mind and attention on.

We always start the morning of the first day with a staff breakfast and some kind of "Hello, My name is..."  This year, tables were arranged in a circle and our principal asked us to introduce ourselves and share our "big memory" of the summer.  I instantly let out a little chuckle when she said this.  I had joked with my PS that I would have one hell of a "What I did on my summer break" story.  No, I did not stand up and say "Hi, I'm Kristin, I teach 3rd grade, and this summer I got a mastectomy."  I shared about my trip to Curacao. :)

I tell you what, though, preplanning and the first week back to school took a lot out of me.  I sat often (I never sit), was uncomfortable frequently, and completely exhausted by the end of the day.  But each day got better than the day before, and that's all I need.

Tissue Expander

When I had my mastectomy, a tissue expander was also put in place.  My tissue expander looks similar to the ones above.  Usually, at about a month post op, weekly expansions begin.  Due to my recovery, my weekly expansions started a little before 3 weeks.  Below is a diagram that quickly explains the entire process.

This was another step that I was super nervous about.  Once again, all of my research was split on whether or not this was a painful experience.  The process took place weekly, in my case every Friday.  Yes, that is how I began my weekend. EVERY SINGLE WEEK.  It was usually a short and sweet visit.  Usually, when we walked into the room, this was waiting for me (shown with my phone for size reference):

My PA would come in, use a magnet to find the port and make an indentation, and then would insert the needle and inject the saline.  I got 60ccs every week.  I couldn't watch the needle go in, but always felt it.  Once done, she would put a little bandaid on, and off we'd go.  Less then 15 minutes.

For the most part it, the actual injection was not painful.  With the exception of twice, I would just feel extra uncomfortable Fri night through Saturday morning.  Twice I had a horrible time, and actually felt like the tissue expander was going to come through my chest later that night. It was bizarre to see my chest "grow" weekly. 

The tissue expander is not comfortable, at all.  I constantly felt like a rock was sitting on my chest all day, everyday.  My chest was tight and hard as a rock for many months.  I just had to keep reminding myself it was only temporary..

The Daily Pain that is JP Drains

Jackson Pratt Drains. Bane of my existence throughout the entire mastectomy process.  They.Are.Awful! When I woke up from my surgery, I had two of these coming out from below where my right breast had been.  They feel weird, they look weird, there is nothing positive about these drains.

The anatomy of the drain - There is a flat tube with holes that is inside your body.  That tube is connected to a closed tube that is outside the body, and stitched to the body.  At the end of that tube is a grenade looking bulb.  When compressed and closed, the drain creates a suction that helps remove excess fluid from the body.

As if having these drains weren't bad enough, you have to "strip" (squeeze and flatten the drain to force liquid in bulb) the drains, empty the fluid and then measure and record the amount and color.  Sound fun right?! Yeah...no..

The output over 24 hrs had to be less than 20ccs for 2 days before my PS would remove them.  My first one was pulled about 2 weeks after my surgery.  I was SO NERVOUS about it getting pulled.  I had (of course) researched online, and had seen both sides - worst pain ever and not too bad.  I couldn't watch her pull it.  I could definitely feel it snaking out of me, but it was more of a weird sensation than it was painful.

My second one was pulled after 7.5  weeks.  Yes - SEVEN AND A HALF WEEKS!!

Seven whole weeks of having at least 1 drain.  Seven weeks of drain maintenance.  Seven weeks of alternating through the few "Flowy" shirts in attempts to hide the drain.  Seven weeks of no fun.

The 2nd drain spent about 2 weeks toying with my emotions.  It would get down around 20 for a day then shoot back up to over 30 ccs.  I was googling and trying any trick to get the output down..and to no avail.  The drain had been in me for so long, my skin began to grow over parts of the sutures. I began to think we would be connected for the rest of my life.

After 7.5 weeks, my PA decided that the output was close enough to 20 (many PS want it under 30, but mine is conservative) and she pulled it.  The removal of the sutures was more painful than the actual drain removal, but it still was not a comfortable experience.  But it was OUT!! Wahoo!!!  One of the happiest days!

Recovery Lifesavers!

Recovery is not a pleasant process, but there are somethings that I found (either through others blogs or trial & error) that made it a little easier.  These are my life savers.

1.  Mastectomy Camisoles - If I had a double, I would have LIVED in these.  These camisoles came with breast forms you can slide in built in pockets and had pockets you could velcro in to hold your drains.  I never wore these out of the house, since I still needed some support on the left side, but these were wonderful to sleep in.  They kept my drains safe and comfy while I slept.  My insurance covered two of these, but I was totally willing to pay for them if needed.

2.  Pregnancy Pillow - Sounds silly I'm sure.  With my first 3 surgeries, sleeping was an issue. I am naturally a side/stomach sleeper.  We tried all sorts of configurations with pillows and it just never worked out.  So, we decided to try a pregnancy pillow.  I got the one from the Boppy, and configured it so it was basically a boppy for an adult.  This made such a difference in sleeping for me.  It was supportive and made it virtually impossible for me to even attempt to sleep on my side.

3. Cup with a lid & straw - Keeping up with your water consumption is so important, but doing this while laying down isn't always the easiest to accomplish without wearing half of your cup.  The Bubba cup I made for our Curacao trip came in SUPER handy with all of my surgeries.  The lid and bendy straw made drinking easy no matter what position I was in. 

4.  Dry Shampoo & Baby Wipes - Full on showers are somewhat limited during this time.  Some Dr. don't want you to fully shower until the drains are out (thank God mine didn't follow this!) and sometimes you just don't feel like exerting all of the effort that comes along with a shower. Because of this, dry shampoo and baby wipes become your BFF. 

Other notable mentions - 5. throat drops - my throat was really sore for a couple of days after surgery.  6. Netflix, Hulu, etc - there is a decent amount of downtime between naps, why not fill it with random TV shows?!

First Appointments...

The first week after my mastectomy I had to go see ALL of my doctors.  I was not excited.  Not because I had to leave the house, but because I really just wanted to be.  I didn't want to be poked and prodded, etc.  However, I understood the need and went.  I'm a rule follower like that.

First up, plastics appointment on Monday (4 days post op)  Instead of meeting with my PS, I was now meeting with his PA.  This appointment was ROUGH on me.  She came in and was a lil on the aggressive side.  While "helping" me take off my surgical bra, she was all sorts of quick and rough.  My TRex arms were not up to bending the way she wanted them to.  Then, she, without warning, ripped (yes ripped!!) off the tape covering my incision.  I was thisclose to smacking her.  It was awful and I wanted to cry.  Leaving the appointment, I told my mom and Jay that I refused to let her touch me again if I came in and she was my person.  Well, she became "my person" and I ended up LOVING her.  She must have been having a bad day....

On Wednesday, I had my first physical therapy appointment and my post op appointment with my oncologist.  Both of these appointments were a pain as well.  Partially because I was just plain over doctors and appointments...

Physical Therapy - located in the "Cancer Pavilion" and located right next to the chemo and radiation wing.  I saw that and it was like I was punched in the stomach immediately.  Crazy how a few words can affect you.  At this appointment I met my PT, who is super nice, but a bit of a close talker.  I also met her current two interns as she gushed "I remember you from the board meeting!" and "This is a rare case, so you are going to want to be in here!"  The better part of my appointment was spent being a teaching tool of sorts.  I didn't really mind, but can see how some people would loathe it.  My feeling is if they can learn something from me to save someone else, then by all means - study away!!  After the lesson, she began stretching and doing exercises with me.  I have never been so frustrated with my body.  Simple things had be on mt verge of tears.  But still..stubbornness won the battle and I vowed to be better by the next week.  I left there sore.

Oncologist - this appointment went pretty well.  I had a fever, which led her to realize that no one had given me antibiotics when I was discharged.  This was a problem, as I had two drains (basically open holes) in my side.  She brought out the final pathology report from the mastectomy and began to read it and explain it to us.  She said that there were still tumor cells in the tissue, so it was the right decision.  She also said that the report said the margins used in this last surgery were clear.  I am all clear!  Afterwards, my Mom told me she almost broke into tears at that point.  Confused, I asker her why.  She quickly answered "Because it is all gone."  I guess I never really allowed myself to wander that road of thought, so when my oncologist said it was clear, in my mind it was just confirmation.  It wasn't until later, much later, I realized that the report really was a big idea. 

With those appointments behind me, it was time to continue the recovery process.

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).

Here we go again (Surgery #3)

We got back from vacation and my mom and brother were in town.  We got to hang out and spend time together before my surgery on that Friday.  Luckily my surgery was the day after July 4th, so I got to enjoy pool days and BBQs with them.  This was another great distraction.  I love being with family, especially my brother.  He gets me and he gets what I need - if its a silly distraction, he will surely provide that.  Prime example - he gave me a minion for "good booby luck" on my surgery.

So, the morning of surgery #3.  Same as the other 3.  Get up, reshower with the special soap, get dressed in my surgery uniform - yoga pants and oversized wildcat shirt.  We were to check in at 6:30 at the Cancer tower.  Even if you do not have cancer, it is still alarming to have that printed on your armband. 

Preop - Got into my lil preop room and into the fun attire.  All of my support staff (Jay, Kods, Mom) are squished in there with me and I find a dance documentary on the TV to watch - lucky them :)  Then comes the revolving door of Drs..Dr Spiguel has a resident and 3 interns..talk about a packed house!  The nurse is talking Auburn football as he keeps jabbing me attempting to insert the IV.  I wanted to smack his hand!!  I got a field trip to the ultrasound room, so that they could mark the second lump and devise a plan for its removal.  Once again, a packed house for this viewing.  (The joys of being in a teaching hospital)

Once back in the preop room, Dr Singhal comes in and bulls out a blue marker.  Tells me its time to draw.  At this point Kods leaves the room.  My chest, both sides now becomes a map of blue lines as he measures and draws and takes pictures.  It was a very interesting process.  When finished, it;s go time!

I get rolled into the once again, packed house, of an operating room.  After some IV replacement issues, followed by blood pressure issues, followed by anesthesia issues (couldn't knock me out no matter how much I kept breathing in the gas) I was knocked out and surgery was completed.

I woke up in recovery and while still a little hazy, Dr Spiguel came in to discuss the surgery with me.  She tells me that too much tissue was compromised and with the margins not negative, she was concerned.  With the size of my tumor and being phyllodes, I had an over 60% chance of the tumor reoccurring within the next 1 - 5 years and  with mine being borderline, an even higher chance of it being malignant.  Mastectomy it is.  I immediately start balling.  I knew it was an option, but not what I wanted.  She also tells me due to the placement of the fibroadenoma, and its interference with the blood supply, that they will have to take my nipple.  It was all a bit much for me and I had a five min pity party while she explains to me while its the best (and really only) option but gives me an option of delaying my 4th surgery.  After 5 minutes, my rational side returns and I tell her to keep my surgery for next week. 

I got back to postop and all of my support are there looking like they swallowed a canary.  At this point I do not know what they know, so I go to tell them I have to get a mastectomy and start crying again.  After consoling, they help me get dressed and we are on our way home. 

As I lay on the couch recovering, my wonderful brother cooked us all breakfast for dinner.  It was over dinner that someone drops the info that apparently I will get a nipple tattoo.  Say what?! This is news to me..

Heaven on Earth

 

What started out as a conversation between Jay and his Dad about a weekend in the Bahamas during his sisters baby shower, slowly morphed into a Caribbean summer vacation.  Throughout a series of flight changes and needed relaxation, it went from 4 days to 7.  After much back and forth, we ended up choosing Curacao and the last week of June.

All of this planned and booked before I found my lump.  Once the craziness began, on the hardest of days, we would just focus on the trip.  Without even knowing it, we planned the trip at the perfect time.  I was healed enough from my first two surgeries and had my next two after.  

Curacao was beautiful! Heaven on Earth.  Everything I needed for a week and more.  I can't talk about my journey without briefly mentioning this trip.

We were giddy in the weeks and days leading up to it.  I had made countdown frames that we changed daily.  I even had an app on my phone.  Silly I know, but I needed distractions. 

We had an amazing flight there - free unlimited drinks (rum & coke) and the entire back half of the plane to ourselves.  The views were breath taking and made me even more excited.  The further we got from Miami, the more I felt my stress and worries start to lessen.  By the time we stepped onto our resort grounds I could have sworn I was 10 pounds lighter from the stress lifted from my shoulders.

We checked in and started heading to our rooms.  Last I heard, we were staying in ocean view rooms.  That was something I really wanted, I just wanted to open the windows and see the beautiful blue water.  Boy, was I shocked when we actually opened the door to our room!  As a surprise to me, my MIL and FIL had our room upgraded to a Beachfront Junior Suite, with wrap around windows! Champagne and goodies were waiting for us, and we wasted no time popping the bottle.  It was night when we got there, but this is what we woke up to..

It was a wonderful week!  Beautiful beaches and pools.  We stayed at an all inclusive, so we had all of the drinks and food we could ever want.  The entertainment was so much fun.  We had a couple of excursions of the resort - animal encounter snorkeling and horseback riding - and also spent a day sightseeing in the capital city and one all around the island.  I will never forget this trip.

Not once did I think about what was waiting for me at home.  I was completely in the moment and loving it.  I didn't wear a watch or have my phone all week.  We were completely off the grid and loving it.  We were a part of the preferred club, so we had internet access, but I didn't feel the need. 

Curacao now holds a special place in my heart and I can't wait to go back.  That trip was what I needed - for a week I could just enjoy the beach and spend time with my fantastic husband.  I was rejuvenated and ready to tackle this next chapter with all of my strength.

How beautiful is this water?!

Answers..

For as much information I had received at my last two doctor's appointments, I still had a lot of uncertainty swirling around in my life.  Was their sarcoma present in the tumor?  Would I have a reduction or a total mastectomy?  The sarcoma was the one that weighed heavily on me.  My dad had a sarcoma in his leg when he was diagnosed, so I truly understood what that would me for me, and it scared the HELL out of me.  I continued to try not to worry too much until I knew for certain, but after over a month of uncertainty, my resolve was starting to crumble.

On Father's Day (yes a Sunday), we were up and at Shands MRI at 7:30 in the morning.  Once again, my Jay was right by my side.  This morning he proved not so helpful at one point...so I was having regular MRI images done, and then images with contrast.  In order to do this, they would have to put an IV in my arm.  So, before we were to walk in the underground tunnel under Archer to get to the Cancer tower for my breast MRI, I had to get the port (I am sure that's not what they call it) placed.  I NEVER watch IVs, blood drawing needles.  I am not afraid, per se, but I don;t enjoy watching them go into my body.  Jay is sitting next to me, so I decided to look at him, hoping it will calm me.  WRONG.  I am feel the needle go in, and I feel the wiggling of it.  At that point I look at Jay, who has a look of concern and "Uh oh" on his face. NOT what you want to see.  I then make the dumb mistake of looking at my arm - blood dripping down it!! I instantly feel nauseous.  I don't know what happened - Jay told me something about the nurse's glove being to big and him moving it...I don't know.  It didn't hurt after he got it placed properly, but I did have to sit for a min to collect myself.

MRI went smoothly.  I don't like them - to closed in for me, but the lady was very kind.  I had headphones, got to pick my music, and after I told her I was afraid I was going to get claustrophobic, she would warn me before sending me in so I could close my eyes, and then would give me time count downs while inside.  I had ones taken on my back, and then the fun ones - on my stomach, with my breasts in plastic cups.  I was in and out in an hour with a glowing report from the tech on how well I did.

The ultrasound later in the week was to further look into another lump that was found in the same breast.  These images were done at Shands breast imaging (all women) office.  Both the tech and radiologists were very sweet and informative.  They told me what they were looking at and that for the first part they would be silent, but that did not necessarily mean anything bad.  I left with them telling me it was a fibroadenoma. 

After all this was said and done, it was the end of the week, and we were about to be heading out of town (and the country) to Curacao for a week vacation.  I was hoping to have a plan of action before then..and then Dr. Spiguel called with the same intent.  She wanted me to enjoy my trip and wanted to share everything with me before then.  Told you she was totally lovable!!

She calls and tells me she has more information for me.  I sit down on the bed and grab the closest piece of scrap paper and a pen.  And hold my breath.  She begins with she took my case to the breast board and they agree on the phyllodes diagnosis.  They also agree on the two surgical options.  She then tells me pathology came back and was negative for sarcoma.  At this point I start to cry.  Tears of relief streaming down my face.  For the rest of the conversation I was listening, but not listening.  I got off the phone with notes scratched all over the paper, but can't remember hearing her say any of it.

No sarcoma. No cancer. No chemo. No radiation.  As much as I kept telling myself that was not an option, I am still rational and a part of me had to accept it might be a reality.  No it had been ruled out and I could breathe.  So thankful.

At this point, Dr. S needed to go in and look at the cavity from the last surgery and look at the tissues/margins.  Dr. Singhal would scrub in with her and be their to see what he was working with and discuss my case with her.  So, we scheduled my 3rd surgery the week after our vacation with my 4th scheduled a week after that.  We still did not know what that 4th surgery would be.  My fingers were still crossed for a reduction.

Skin..

So...my first appointment with my plastic surgeon was one that filled me with so much anxiety.  I did not know what to expect from the Dr or the actual logistics of the appointment.  Sitting in the waiting room did nothing for my anxiety - it was a mix of patients - women waiting for botox, toddlers with cleft pallets, and women who were clearly going through chemo and reconstruction.  I felt nauseous.  Jay held my hand and quietly reassured me it was fine.

When we finally got back to see the Dr, I was shocked. In a good way.  I am not sure what exactly I was expecting, but Dr. Singhal was not it.  He was younger than what I expected and so very kind.  He through me off early in the conversation by saying, "So when were you diagnosed?"  My heart stopped and I just stared at him.  He proceeded to explain the grey area that phyllodes sort of exists in.  He was very reassuring about the "diagnosis" and what would come ahead.

Next came the not so comforting part - the measuring and planning.  Now, by this point in my journey, I was really no longer uncomfortable topless in a Dr office.  I mean, I was that way at least 3 times a week for a month now, so it was "normal" to me.  Sadly.  But this appt was so different...there I sat on the chair/table as the Dr measured, sat back and thought (complete with hand on chin) and measured some more.  Most of this was done without any conversation.  Even Jay commented afterwards on how awkward HE felt throughout the process.

Once that was over, we began discussing the possible options - a reduction to both breasts or a mastectomy on my right.  At this point it was up in the air until more was known.  He was very forthcoming with the details of all of my options in both situations.  When asking what my expectations were, I just kept responding " I don't really care what my breast ends up looking like.  I just want to be healthy."  I don't think he believed me at first.  He kept saying its not a vanity thing, I want you to be happy and comfortable.  By the end of our conversation, he got it.  I am not attached to my breasts, I want to live, and if that means losing one or both, let's do it.

When we started talking mastectomy, I was initially adamant that I wanted to use my own tissue.  I did not want anything foreign in me or something that required maintenance.  Well, as he explained those options, I started to waiver on my decision.  Instead of worrying, I decided just to continue hope of having a reduction.

I left his office in LOVE with yet another Dr, lots of information, and a sense of relief and comfort that I had a highly capable team in my corner fighting with me.

Next on the calendar - MRI and another ultrasound...

Hope..

 After the last appointment, I was so ready to be done with that Dr.  Unfortunately, I still had half of my staples in and would have to go back at the end of the next week to get them removed.  I was also STILL waiting on pathology.  We were at week 3 at this point.  The original lab sent it to Shands for a 2nd opinion.

While my lovely tumor was making its trek to Shands, I was making the same direction.  I had an appointment with a Breast Specialist/Oncologist early the next week.  After researching the new Dr.  I got excited.  She's a woman! Not only that but she specializes in breast preservation and high risk patients.  Good hands to be in.

We arrived at Shands for the appointment, and the waiting room was a lil scary - mostly older women, and many of them look sick.  And I know that kind of sick, I have seen it before on my dad.  It's that exhausted, fighting for life chemo/radiation sick.  Is that going to be me?  I found myself asking in my head.  After a little more thought (the wait was long)  I thought...I hope not, but if it is I'll fight it as best I can.

As soon as I met Dr. Spiguel I LOVED her.  She is so down to Earth and doesn't mess around.  She is a little older than I am, but knows her stuff!! She sat down and asked me to bring her up to speed.  When I told her the little I knew, and the lot I didn't know, she stepped in and saved the day.

She had pathology results! (Enter a chorus of Hallelujahs) Once I became her patient, she stepped in with pathology.  She wanted an answer - she got it Phyllodes, borderline.  She then explained it in detail with us,  as well as what it meant for me in the long run.  She also said that she had ordered more stains on the tumor to rule out sarcoma.  

When she did the examination, she was not thrilled with the staples either.  I started to feel like maybe I should be angry, but I still wasn't.  It's a shoulder shrug issue to me.  She check my nodes, went over my imaging, and then we got down to a plan.

We discussed margins, which is important, especially with phyllodes.  We want negative margins, meaning no tumor cells present, at a determined distance from the tissue still remaining in the breast. Well, hooray, hooray, the previous lab did not orient the tumor before they sliced it, so if there are any positive margins she will have to rove more tissue all the way around because she wont know which side it's from...Thanks lab!  She also wanted me to get an MRI so she can have even more data for her decisions.

Finally, we discussed the two paths I had laid out before me.  I had 1, possibly 2 more surgeries.  The final surgery options were a reduction of my breast (even there was enough viable tissue) or a skin sparring mastectomy.  It was all dependent on further imaging, the continued pathology, and board discussions.  

She referred me to a plastic surgeon she has worked with in these types of cases, and sent me on my way.  I left there with more hope.  She reassured me that the first priority was my health and trying to preserve as much of my own breast as possible.