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.