No More Fills

Yesterday was my last appointment before my exchange surgery.  We saw the Breast Surgeon and the Plastic Surgeon and officially established that I don't need another fill into the tissue expanders.  

The implants are 100% silicone.  I will have the smallest size or the 2nd smallest size available.  They will determine which size fits the best in my chest cavity.  The fit has to be tight to prevent the implant from rotating or from "wrinkling" under the skin. It also needs to be big enough to keep the skin tight or the skin would have a greater chance of dying.  

After my appointment, we went to lunch at PF Changs to celebrate.  I typically follow the Autoimmune Paleo Diet (AIP) with some reintroductions (wine, eggs, chocolate).  I have been following it for about 19 months and because I know that it truly helps (lowers inflammation in the body and significantly helps with autoimmune flares), I really do stick with it every single day except for on a rare occasion like yesterday at PF Channgs!

Although I am a firm believer in the diet, I also believe it is OK to stray from it once in a great while.  That is what I did yesterday.  A little soy, a little rice, a little refined sugar.  Not my usual but yesterday we feasted and I enjoyed every bite.  Plus at PF Changs, they have a fantastic gluten free menu.  I always stay gluten free.  

I am so glad to not have anymore fills.  

3 Requirements for Exchange Surgery:

~8 weeks from mastectomy 

~4 weeks from last fill

~No bruising left 

So, the earliest I could have surgery would be August 24th.  The scheduler should be calling on Monday.  

I also found out the surgery should be about an hour and I will be under general anesthesia.  

After the exchange surgery, I feel like the real healing can start.  Otherwise this next surgery is just looming in the back of my mind.  

Healing The Scars & Bruises

After doing a little research, I found that Arnica Oil can help with bruising and Vitamin E oil can help fade scars.  I ordered both on Amazon.  I love Amazon.  Especially Prime. 

I have been applying the arnica oil at night and the vitamin E oil in the morning and if I remember, I will apply one or both at various times during the day.  I really do notice a difference.  The most noticeable difference is in my bruising.  This will also help to prevent stretch marks. 

 

Grateful & Thankful

I truly have never received more cards, texts, emails, and/or gifts in my life.  Not even when we had our babies!  These cards cover this entire entrance from our kitchen into our dining room. 

 

As hard as this journey has been so far, our friends and family have made it so much easier just by being here for us.  We appreciate the love, the support, and the prayers very much. 

 

With all of the complications I may have had going into surgery, and then not having one single problem...well, that is pretty amazing.  That is the power of prayer.

 

I found these outside of my front door

Luke made me this

 

 

Thank you, all.  We love you.

 

Starting Physical Therapy

Today I started Physical Therapy.  I am seeing a Physical Therapist named Shelly.  I liked her right away.  Not only is she a Physical Therapist but she is a Lymphedema Specialist and the owner of her Physical Therapy business.  Women who have had mastectomies come from all over the area to see her and I can see why.  She is exactly what I would want in a Physical Therapist:  kind and friendly yet gets right down to business and has high expectations.  Exactly what I need. 

First, she evaluated my range of motion in my arms.  It is better than she expected at 3.5 weeks post-surgery.  Hooray!  I will take that as a win.  My left arm continues to be better than my right arm because Dr. Lisa took out the lymph tissue on my right side, so it has more healing to do than my left. 

My arms have come a long way.  For about 10 days, maybe even 2 weeks, after surgery, Chris and the boys told me I had "T-Rex arms." 

These days, I can shampoo my own hair, blow dry it, and pull it into a pony tail by myself.  I know that doesn't sound like much, but if you have been through this, you know it is a BIG DEAL! 

I still can't scoop my own ice cream (Coconut Bliss!  I will talk more about my diet later) or open a bottle of wine or vacuum...all things I would like to do, but I am getting there.   I also can't carry full laundry baskets, but I am going to milk that one as long as I can!

After my arms, Shelly evaluated my shoulders.  My shoulders are not in the best shape.  They are supposed to sit down and back and mine are up and forward, common among women who have had mastectomies.  We want to hunch forward and in because it hurts to put our shoulders down and back.  If we don't work on this, it can become a significant problem. 

We did several stretched for both my arms and my shoulders and I am very sore afterwards.  I will continue to work on the exercises at home and see her again next week. 

Finally, she evaluated me for lymphedema. 

Lymphedema is a life-long condition where the lymph fluid doesn't drain properly and creates swelling - in this case - of the arms.  The swelling can be moderate or very severe and can come and go as "flares." 

People who have mastectomies are at risk of developing Lymphedema in their arms.  If they have lymph nodes or lymph tissue removed, the risk increases.  The more lymph nodes that are removed, the greater the risk.  If one has radiation on top of that, the risk is even greater because radiation can further damage the lymph system. 

The good news for me is that I only had lymph tissue removed on my right side.  I do not need radiation or chemo so my risk is slightly lower, however it is there.  Shelly said I will continue to have a slight risk on my left side as the tissue was slightly disrupted, but for sure the risk on my right side is much higher. 

Shelly scared me just a little bit when she measured my arms and found my right arm to be slightly bigger than my left arm. 

Also- she asked me if I had any swelling in my hands or fingers and I actually have had swelling in my right hand.  It happened twice when I was walking around the loop in my neighborhood (I just started back to walking & it feels great).  Both times, the swelling was significant enough for my ring not to come off.  I didn't think much of it at the time, but hand swelling is definitely not normal for me.  It was not something I had prior to surgery. 

I am reminding myself that it could also be swelling because of my kidneys which I know are not great right now - post surgery. 

I am not overly concerned about my right arm being slightly bigger than my left as I am right handed and do much more with my right arm, so maybe that arm is stronger? 

She was not overly concerned, but she did say it was something to watch. 

I ordered my first "sleeve" which is a compression sleeve for my right arm. 

I would have needed one anyways, despite the "red flags," as a preventative measure.  I ordered a pink one.  I should have it by my next appointment next week. 

She said to wear it when I am walking, running, gardening, and/or doing anything more strenuous than usual. 

Here's hoping I don't develop lymphedema. 

Tissue Expanders

I hate tissue expanders.  The end.

Well, OK.  I know they serve a purpose, but still they are horrendous. 

The best way I can describe the tissue expanders is to compare it to taking a heavy paper bag and crushing it into a ball and shoving it under your chest wall.  I can literally feel the hard edges to the tissue expander in there.  There are sharp edges and folds and it feels very uncomfortable.  Sometimes I can feel it shifting or moving just a little and it is like nails on a chalkboard for me.  Not painful (the expanding is what is painful) but just so so SO uncomfortable.  I can now understand why people say they can't wait to get the exchange surgery.  I am now in that boat too. 

I have to wait a full 4 weeks after my last fill to have the exchange surgery (swapping tissue expanders for implants).  All of the bruising has to be gone before surgery and I have a lot of bruising still from the surgery and also fresh from my fall.  The last requirement is that the exchange surgery can't take place sooner than 8 full weeks out from the  mastectomy surgery.  So, at the very earliest, I could have the surgery August 24th, assuming my bruising is gone. 

The good news is that I won't need drains for this next surgery!  Hooray!

We have decided it would be nice to have the surgery before school starts as somehow that seems easier with the boys.  So, our goal is to have it by the end of August.

We are thinking I will need one more fill next week but it will be a much smaller fill, so hopefully not nearly as painful as this last one. 

 

Reconstruction: A Lot of Uncertainty

I am absolutely an "order need" and always have been.  I like to order my Brooks running shoes in a 7.5 and know without a shadow of a doubt that they will fit perfectly.   Much to my dismay, reconstruction is not as easy.  There are a lot of unknowns. 

I went to the Plastic Surgeon's office yesterday for another "fill."  Once again, it is a highly emotional appointment as you watch them blow up a fake breast on your chest.  I was more prepared for it this time though and it wasn't quite as bad as the first one. 

She put in 90cc on both sides. 

I have made it very clear that I want to be about the same size that I was prior to surgery.  No one has been able to assure me that I will be. 

There has been a lot of talk of "well, you'll be somewhere between 350cc - 450cc depending on how the implants fit."  Or "You'll end up being a little bigger."  Well, why??  Why such a large range on the estimate?

Today I told the NP "If I wake up from surgery a lot larger than I was, I will be devastated." 

It all depends on how much space is in your chest cavity.  They have to be sure to fill it entirely because if they don't, scar tissue can form and cause complications.  Also, they need the skin to be completely tight so that it has less risk of dying.  All of that is to say, it is harder for them to do a smaller implant. 

Because I did the nipple sparing surgery, they can't take away any skin because then the nipples wouldn't be in their natural location. 

So, I am praying that all will go well.  I have been warned that when I wake up from surgery, I will look MUCH bigger than I want to because of swelling.  They told me to give it a good 6 months before I will be down to my new normal size. 

As for the fill itself, this morning I am having major muscle spasms in my neck, my lower back, my upper back and even my sides.  I am having much more discomfort than last time but this was a much bigger fill. 

I will avoid driving today with how sore and tight I am.  I am back to taking the muscle relaxers around the clock. 

 

First Day Driving

There have been a lot of firsts for me these last few weeks!  Today was my first day to drive.  Just one day shy of 3 weeks post-surgery.  I think I would have been driving a little sooner if I didn't fall.
The fall set me back a few days.  The doctor said I likely popped a couple of internal stitches and had me continue to wear a compression bra 24 hours a day and said not to use my right arm for a day (that is hard!).  She said if I suddenly went flat or one side was bigger than the other, it would indicate a leak in the expander, which would mean an additional surgery.  I am thanking the Lord that hasn't happened.  I did have tremendous swelling and some bruising and additional pain but I am improving a bit each day again.

I drove with my pillow between my chest and the seatbelt & other than being extra sore when turning the steering wheel, I did great!

Chris surprised me with a survivor magnet for my car.  He was so happy to put that on.
This experience makes you appreciate each day more than you thought possible.

My big drive was just a couple minutes to the village to watch the end of Luke's lacrosse practice and then to drive him home.  Watching his scrimmage at the end of practice was especially exciting for me since I haven't seen the kids play their sports in 3 weeks!

After I drove Luke home to shower and grab a snack, I drove him back to town for his violin lesson.  Chris had taken 2 full weeks off of work and now was working just a little more than a half a day at the office.  Today was the longest day I was on my own and here I drove twice!  I was feeling partly like Super Woman and partly like I was crazy and needed to go to bed (which I did for 2 hours after we got home!).   I waited the 30 minutes outside of his lesson room and then we drove home. 

By the time I drove back to town the 2nd time for Luke's lesson, I was getting really sore.  The hard part is turning the steering wheel, especially if it is a hand-over-hand ..pull...pull...pull... situation, which it was fairly often on the way down and back.  I got so sore that Luke had to open the close the car door for me, but we did it!

Cherishing each day.  A little healing everyday is good stuff.  Physically and emotionally.

The Big Fall & My First Day Out

Chris bought me a "bed wedge" from Bed, Bath, & Beyond and it is fantastic.  It props me up, not quite as much as the recliner, but close.  It has allowed me to sleep in my bed again.

Last night was my 2nd night in our bed and I was doing so well, I could even get in and out of bed on my own. 

I had recently started taking my lupus drug again (I had to go off of it for surgery) and it disrupts my sleep for about 2 weeks when I first start taking it. 

So, I woke up in the middle of the night and decided to get up to use the bathroom.

Not wanting to wake Chris, I felt very accomplished getting out of bed on my own and then snuck around the end of the bed in the dark to make my way to the bathroom. 

As I rounded the corner, I tripped on my treadmill.  My feet got tangled up and I fell directly on my hands and arms. 

Remember me saying how difficult my arms are right now?  How I can hardly use them?  Yeah.

Somehow I was able to keep my chest from hitting the floor and was literally in a plank. 

I found myself screaming in some serious pain and Chris turned on the light and flew out of bed.  I was convinced my incisions were split wide open but they weren't. 

This morning, I felt horrible.  I was totally swollen and had brand new bruising on my right side.  It was discouraging to say the least.  I had been doing so well and then today it felt like I went backwards by about 4 days. 

We decided I should put on the tightest sports bra I could handle so that I could have compression around the bruising.  If there was internal bleeding, it stopped.  The swelling went down quite a bit over the next couple of hours. 

We laid low until about 2pm today and then we decided it was time to get out of the house for the very first time (except for doctor appointments).  It was 80 degrees and sunny and time to take a little outing to the lake!

 

In the car with my pillow.

 

 

 

 

 

 

At the lake!  It was so good to get out of the house and see some friends.  It is renewing for the soul.  Day 19 post-surgery.

 

 

Post-Surgery Arms

After surgery, I realized I could literally not move my arms - almost at all.  My right arm was much worse than my left arm as it was the right side where Dr. Lisa removed the lymph tissue. 

In addition, my entire chest area is completely numb and the numbness wraps around through my arm pit area and to part of my back on my right side.  Since all of the nerves were cut, this numbness may last forever or I may regain some of the feeling in some areas. 

Not only could I not move my arms but I couldn't put any pressure on them...no pushing and no pulling and no lifting of any kind.  It was very overwhelming.  Initially I could not lift a glass to my lips. I have already bought straws in preparation for the next surgery. 

Post-surgery Arms:  Things That Are Hard/Impossible:

Getting in and out of bed
Getting out of recliner
Pulling lever to recline the recliner
Getting dressed / undressed
Eating with right arm (or side that had lymph nodes out)
Managing Hair:  Brushing, Shampooing, Pulling Back into Pony Tail, etc.
Pulling shirts over head
Open kitchen drawers
Open fridge, microwave, or dishwasher
Twist open jars, including medicine
Open or close car door or sliding glass door
Holding cell phone up to ear
Scratching forehead
brushing teeth
Reaching up high (reaching up at all!)
Putting on makeup, especially mascara
Clasping a necklace behind your neck
Lifting anything heavier than a small glass of water


Chris did literally everything for me that first week or 10 days.  He even shampooed my hair in the kitchen sink and then dried it for me.  He still does a lot for me, but I have come a long way. 

 



After about a week, I was able to sit on the deck for short periods of time.  Chris had to open and close the screen for me.  It was so nice to have a change in scenery!


Now that I am 19 days out, my arms are greatly improved.  They started getting a lot better after the drains were removed.  They are still very sore and I still can't lift them over my head but I am getting much better.  The Physical Therapy will help me to regain that mobility even more.  I still can't handle big stuff like closing or opening car doors, but I can open the fridge and the kitchen drawers now, and that is a bonus! 

It is amazing how much we take for granted when we are healthy & well. 

 

The Pathology Report

Getting the pathology report was the most important appointment post-surgery.  We met with Dr. Lisa and she went over the details with us. 

The cancer was completely contained to the ducts and was only in the right breast.  The margins and lymph tissue was clear and I would not need chemo.  It was simply the best news ever.  Our hearts were light and we were overjoyed.  This was the news we needed to see the light at the end of the tunnel.

This meant I had to power through the rest of the fills, go to physical therapy to regain mobility in my arms, and do my final reconstruction surgery hopefully in September. 

I could do this. 

 

The First Fill Post-Surgery

I am not sure that the magnitude of what has happened truly hit me until the day I was in the plastic surgeon office getting my first "fill" 13 days after surgery. 

During the surgery, the Plastic Surgeon put a tissue expander (aka: a plastic bag with a metal port on the front) behind my chest wall.  Naturally it is very tight as nothing really belongs back there!  During the surgery, they filled the tissue expander with air. 

On my first fill day, they used a magnet to find the port on the front of the tissue expander.  After finding the port, they inserted a needle to extract the air.  Then they put in 150cc of saline.  I am told the first fill is the hardest fill. 

Physically, I found it to be very uncomfortable.  The expanders are meant to stretch the chest muscles to make room for the implants and stretch they do!  It seems almost every movement I make pulls my chest wall.  I took the muscle relaxers around the clock for 5 days.  Then, after 5 days, it started to ease up some. 

Emotionally, it was the hardest day I have had.  There is something totally surreal about watching them blow up a fake breast like a balloon on your chest. 

I'm not sure exactly what triggered it, but I felt totally repulsed and shocked at what was happening.  I think it was a mixture of having the drains pulled out, the needle pushed into the port... the air coming out, deflating the "breast" and then filling back up again... just all so unreal.  I had this moment of:  I can't believe this is my life right now.

Still, I have no regrets.  I am grateful for many things and although I waivered a bit on doing the reconstruction to begin with, I am glad I am doing it. 

When I left that day, I was convinced that I would not need any additional fills and that the size was good.  The PA assured me that things would look very different in the coming days as things "settle."  She was absolutely right.

On the day that I left her office, I looked to be about the same size I was before surgery and my skin was smooth. 

6 days later, I am about half of the size and I can now see the expander under the skin.  The saline has definitely "settled."

This was discouraging to me as it made me realize that I need another fill.  I hear the next one will be easier.  I hope so.

The Drains

 

 

 



I had the drains removed 13 days post-surgery and it was SUCH a relief to have them out.  I had to deal with a blockage in my right drain twice during those 13 days and it was very painful.  Little pieces of tissue from the surgery can get stuck in the drain and then the whole chest area swells up with the backed up fluid.  The way to fix this is to "strip the drains" over and over and hope it clears.  Not fun stuff but I am glad I had them.  They kept the fluid down to a reasonable level and helped me to heal. 

Chris had to empty the drains every morning and measure the amount of fluid that came out.  When the fluid is low enough, the surgeon's office will remove them.  I was told I would have to have them for 2-3 weeks and I was fortunate to get them out on day 13. 

Having the drains removed didn't cause a large amount of pain.  I would describe it as uncomfortable with a lot of pulling and pinching.  There is approx. 12-15 inches of tubing inside of the body on each side with another 12-15 inches outside of the body.  So, when they pull it out, it is a very odd feeling.  We could actually see the tubes moving under my skin.  It was not fun but a huge relief to have them out.  I was surprised that they didn't close the incision where the tube came out.  Instead they clipped the stitches that were on either side of the tube and left it open and bandaged it up.  I had a little more fluid drain out there over the next few days, so maybe that is why they leave it open?  It seems odd to have a gaping hole in each side. 


After the drains come out, life is greatly improved.  I can move around much better and have started to gain some more mobility in my arms. 

This is the view from my recliner.  I have spent countless hours here.  It has been so good to have this recliner!  I don't know what I would've done without it. 

Day 18:  I have not been out of the house yet except for 3 doctor appointments. We discovered putting a pillow under the seat belt is a lifesaver. 

 

Bilateral Mastectomy with Reconstruction Day

The day arrived.  I woke up and took my valium.  I highly recommend it on surgery day especially.

We got the kids up and grabbed the bags and were on our way to the hospital.

Maybe I need a frequent flier card or something but we know many of the people at the surgery center in our hospital.  That is probably because this was my 3rd surgery there within a year.  Everyone was so nice.  We could not have been happier with our experience.  I was even able to have a friend of mine from high school be my Anesthesiologist.  Things were coming together.

We had no trouble getting my IV in. 

Then they did injections into the cancer site with a radioactive dye.  During the surgery, they follow the dye to the closest lymph nodes.  Those nodes are called the sentinel nodes.  The plan was to remove 1-3 sentinel nodes for biopsy. 

After I was all set with IV and injections, I got to see Chris and the boys.  My parents came to see me too.  My sister and her family drove over an hour very early in the morning to see me. 

Our friends Nancy, Ellen, and our friend & Priest, Becky all came to see me.  It was so nice to see so many people we love come to support us -- and so early in the morning!  I will never forget that. 

Right before they took me back into surgery, it was just Chris with me.  It was a very emotional moment.  Up until then, I had held it together very well.  This is when the tears started up a bit.  The nurse told me, "This is a big deal and it's OK to cry."  Well, that was it for me.  Cry I did. 

The surgery itself could not have gone better.  All of the potential complications we were worried about with my lupus issues and MTHFR issues never happened.  They didn't need to give me cortisol during the surgery and my heart did just fine.  They removed all of the breast tissue, the lymph tissue, and were able to spare the nipples and all of my own skin.  The plastic surgeon placed the tissue expanders behind my chest wall and filled them with air.  I had the incisions below the breasts at the natural skin fold and also had a drain on each side of my torso, a few inches below the incision lines.   The drain tubes were inside wrapped around both breast sites to help drain excess fluid.  The fluid collected outside of my body in little drains that Chris emptied every morning and night. 

While I was in surgery, Chris, the boys, my parents, my sister and her family all waited.  Gary brought Chris lunch and sat with him awhile.  Lynda picked up our kids and took them home for a few hours and let them hang out with her kids.  She brought them back all before I was in my hospital room. 

When I woke up, I felt some pain but overall not too bad.  They had used some sort of numbing cream inside at the end of the surgery which helped a lot with the pain when I woke up.  Then they started morphine in my IV. 

It wasn't too long and the took me to my hospital room.  That is where I got to see Chris and my parents and sister and within a few minutes Lynda and the kids came.  Also our friend, Chuck came from church.  It was so nice having everyone there. 

It wasn't too long at all and the nausea started.  At first we thought it was from the pain but after a few doses of morphine, I realized it was probably from the morphine itself.  It was so bad that I actually vomited ..only I vomited nothing since I still had nothing in my system.  It was awful.  I was so nauseous it was debilitating.  They started me on Zofran.  I felt a bit better.

My parents ended up bringing the boys to their house to spend the night which was not our original plan.  Originally, Chris was going to take them home and come back for me in the morning.  Thank goodness my parents took them and Chris stayed because it was a very long and difficult night. 

The very first time I stood up to use the bathroom, the pain was absolutely excruciating.  It was very intense.  After that very first time getting up though, it got a little easier each time after that.  I have had 2 c-sections and let me tell you, this pain seemed worse and I have a pretty good tolerance for pain. 

The pain would cause waves of nausea to come and the night was very long. 

The next morning, I was surprised how quickly we could discharge.  I was glad though.  I wanted to be home.  Chris left early to pick up the boys from my parent's house and came back to get me.  We got me into my new PJs from my friend, Lori.  Button down is the only way to go. 

 

 

 
Notice my pink drain belt.  The drains were a big source of discomfort over the 12 days.  The drain belt is essential though to keep them from pulling on your skin.  I got this from Amazon.

This picture was from many days later when I could stand up pretty well!

The ride home was very hard....the seatbelt is impossible across the chest, and I felt every single little bump. 

We got home and I got situated in a new reclining chair that my parents bought us.  It has been a lifesaver.  Even more than 2 weeks out now, I use it all day long.  If you are about to have this surgery, consider a recliner.  It is worth every penny. 

I spent most of the first week sleeping.  I was given Tylenol with Codeine and Oxycodone along with muscle relaxers.  I was not able to take any NSAIDs due to my kidney function.  I took the pain meds for a good 6 days and then had to give them up.  They made me extremely nauseous and at some point I decided that the pain was better than the nausea.  I am still taking the muscle relaxers and that is something that will continue after each "fill" with the reconstruction. 

Hooray for drain belts, recliners, and button down PJs!
 

The Anxiety: Just take the meds

I had never had true anxiety in my life until I had the diagnosis of breast cancer and was waiting for the surgery.  What an unbelievable time. 

I couldn't sleep. 

I could hardly eat.  I was losing weight (well, that seemed like a bonus). 

I was having nightmares. 

I couldn't concentrate. 

I have known many people that suffer from anxiety and I myself had never truly experienced it until now.  I sure have a lot of respect for people who have to struggle through this on a regular basis.  It is not easy. It is really hard.

My primary care doctor, who is also a dear friend, wrote me a script for valium.  I had taken it prior to a couple of my breast biopsies and so it wasn't new to me.  Somehow I was afraid to take it still. 

I took it a few times in the evening when I knew we had no plans and I could just go to bed early.  Looking back on it, I would have taken it more as I needed it.  I was a nervous nelly.  Still am.  Let me tell you that when I did take it, it sure did help.  You have to do what you can to get by.  This was not an easy time.  It was hard.  Really really hard. 

I found it challenging to be in normal social situations and not talk about the fact that I was about to have my breasts removed.  I couldn't get it out of my mind.  All of the what ifs.  What if I needed chemo? What if they found it outside of the ducts?  What if it was in the left side?  What if my kidneys failed?  What if my cortisol fails?  What if I have a heart attack during the surgery?  What if I don't make it?  I won't see my kids graduate from high school, go to college, and get married?  What will Chris do without me? 

I found myself feeling annoyed with people for stressing over what seemed like nothing compared to having this surgery within days.  People saying "can you believe all of this rain we have had?  The weeds in my garden are out of control!"

I wanted to scream, "Can you BELIEVE I have to have my breasts taken off next week?!?" 

It was an awkward waiting period.  I felt unable to function. 

Then there were the people who knew but didn't know what to say.  We would chat and I could somehow tell that they knew but they didn't say anything.  I understood.  What would they say?

I continued to go to lacrosse games and baseball games.  We celebrated Chris's birthday.  We celebrated Father's Day.  We had the year-end school parties.  We had the year-end PTC meeting.  I ran as much as possible.  I laid out in the sun as much as I could.  I went shopping for button-down shirts, front zip sports bras, drain belts, and button down PJs. 

I even went surfing for the very first time behind our boat. 

Life continues despite the fact that you don't feel like yourself and you can't seem to cope. 

It was super awkward to run into people who didn't know.

"Hi!  How are you?"

an awkward pause.. what to say?  Should I just post this on Facebook and be done with it?  How to explain to people? 

"Do you have a chair to pull up and talk for an hour?"


The biggest surprise was to find out how many people love us.  I have never received more cards, flowers, gifts, balloons, texts, emails, and Facebook messages in my life.  Both before the surgery and after.  People from just about every phase of my life were contacting me and praying for me.  It was incredibly humbling.  It was just unbelievable.  We had friends taking our kids to and from school so we could get to appointments.  Friends picking up the boys for practices or games. 

I even received a card with a Panera gift card from some of my son's Middle School teachers.  I was blown away. 

I got cards from some of my friend's parents and even my parent's friends.  I received a prayer shawl from my Mom's prayer group in Florida.  I received emails from old high school friends that I hadn't talked to in years. 

My Godmother made me a beautiful quilt and prayed over while she made it.  I opened it two days after my surgery.  It made me cry.  People truly care about us.  It was very eye-opening.  It was the fact that people took the time to let us know how much we meant to them.  For them to pray for us was just incredible. 

On my surgery day, our Priest, Becky, came to the hospital to pray over us.  Also our friends from church - Nancy, Ellen, and Chuck came.  My parents, my sister and her family, Lynda and Gary came.  Lynda and Gary took the kids out after I went into surgery and brought them back just as I got out of recovery.  Gary brought lunch for Chris during my surgery. 

Just an incredible outpouring of love. 

It was a time of anxiety but also a time I don't think I have ever felt more loved.  It was and continues to be a blessing to have all of these people in my life.  We will be forever grateful. 

The 2nd Opinion

We knew right from the start that we should and would get a 2nd opinion.  It is always good to have a fresh set of eyes look at the whole picture. 

For our 2nd opinion, we traveled to Buffalo, NY to the Roswell Park Cancer Institute.

We dropped our boys off with some of our dearest friends, Gary & Lynda.  It was early in the morning. 

I realized we have dropped the kids off with them many times very early in the morning.  I have had many medical issues over the years that required early mornings and I am telling you, true friends will wake up before the crack of dawn to take your kids.  They have even done it on their son's birthday!  We couldn't appreciate them more.  They truly are family to us.

Lynda took the kids to school along with her own kids.  It was the very last day of school and so it was a half day.  That meant she picked up the big kids at 10:15am and the younger kids at 11:15am.  She made the day extra special taking the kids out to lunch and then back to swim in the pool.  We wouldn't be back until just before dinner time. 

In Buffalo, we met with a breast surgeon team there and absolutely loved them. 

Our strategy was to not say anything about what our doctors back home recommended and just see what these doctors said.

It was a relief to us that they recommended exactly the same surgery.  Literally exactly. 

We were there for hours and had to go over all of my medical history.  I had some complications to go over. 

I have many autoimmune disorders including Hashimoto's, Lupus, and several other more minor conditions.  I have most recently had issues with my hormone levels being extremely low.. including cortisol levels which could complicate surgery. 

Those potential complications were a big focus of our discussions both with Buffalo and with Dr. Lisa and Dr. U back home. 

The best news was that everyone was on the same page.

Before we left Buffalo, we met one more time with the breast surgeon to let her know that we had decided to have the surgery back home. We loved our team at home too and didn't want to have travel complicate things.  She was very kind and understanding and away we went. 

We got back home to get the kids and check out the year-end report cards.  It was an exhausting day but worth it.  I highly recommend at least a 2nd opinion.  We were open to a 3rd opinion but decided we didn't need it.

So, the date stayed on the calendar.  June 28th.  Now, I felt an overwhelming urge to get everything ready.  Freeze meals, clean the house, get the kids organized. 

It was much like nesting before having a baby.  For real.  Nesting. 

Plus I had to meet with the Endocrinologist and the Nephrologist prior to surgery to be sure I was cleared for surgery. 

So much to do.  6 days to go.

Meeting with the Plastic Surgeon: Whoa...

Right after we met with Dr. Lisa, we immediately met with Dr. U, the Plastic Surgeon who would eventually do my reconstruction surgery. 

I hardly remember anything about this appointment. 

Thank goodness Chris was there.

Remember, as we met with Dr. U, we had already just spent about 2 hours meeting with Dr. Lisa.  I think my brain was overloaded at this point.

Dr. U showed us breast implants.  He had us hold them and feel them.  It was so bizarre.  I felt like I was watching myself from a distance.  I was in a fog. 

He showed us pictures of before and after of other women and their reconstruction results.  I was completely and totally overwhelmed. 

We talked about tissue expanders and how he would put them behind my chest muscles to hold them in place.  He also talked about using cadaver tissue to also help hold them in place.

Cadaver tissue?  Excuse me?

He measured my breasts.  He then took multiple pictures of me.  I guess they were my before pictures.

Despite my inability to form words at that moment, we liked Dr. U a lot.  He explained that he and Dr. Lisa would do the surgery together.  She would do the mastectomies and lymph node removal and he would place the tissue expanders to begin the reconstruction.

I made it clear to Dr. U that I didn't want to be any bigger than I was then.  I was happy with what God gave me and I had no intention to go bigger.  Plus, I am a runner and I don't want my chest getting in my way. 

By the way, this news seems shocking to many people.  Not to Dr. U, but when I shared this with some other people later, several people seemed surprised as if to say, why would you pass up the opportunity to go bigger??  Well, as I said, I am happy with what God gave me.  And I am. 

We left there feeling the kind of confidence that you want to feel when making such big decisions.  We were really happy with our team.  We had a date on the calendar.  We were ready to get this behind us. 

It wasn't quite so simple though.  We knew it would not be wise to skip a 2nd opinion.  That is what we worked on next. 

Meeting with the Breast Surgeon: Making BIG decisions

Monday, June 12th, 2017 was our 18th wedding anniversary.  I can't remember if we actually celebrated.  I don't think we did. I do remember Chris brought me 4 dozen roses the day before.  They were beautiful.  It was the first time I have ever had roses completely fill my favorite vase. 

We spent 4 hours of that day at the breast surgeon's office where we met with both the breast surgeon and the plastic surgeon. 

We dropped the boys off at school and off we went to meet with Dr. Lisa, the woman who would do my bilateral mastectomy in a matter of weeks. 

When she walked into the room, we immediately noticed how young she looked.  I think Chris and I might have looked like deer in the headlights but Chris very calmly asked, "How long have you been with this practice?" 

As in "how old are you!?!?!"  "Can you drink alcohol?!?" "How long have you had your drivers license?"

She very professionally replied that she had been there for 9 months and explained about her fellowship and residency prior to being with this group. 

We continued to stare. 

She continued by telling us that if we would rather see a more experienced surgeon, she was sure her partner would be happy to see us.

There was something about her.  I liked her right away.  I thought to myself, if we weren't in this situation, I am positive we'd be good friends outside of this. 

We right away assured her that no, we were absolutely comfortable, and we were.  100%.  It turned out that the more we got to know her, not only were we comfortable but we were thanking God for bringing us to Lisa.  She went above and beyond for us and we will be forever grateful.  I don't think a woman could ever forget the surgeon who did such a delicate surgery, such an emotional surgery.  The woman who not only removes the cancer but removes your breasts.  A piece of you.  Part of your femininity.  The breasts that nursed your babies.  Lisa had that compassion that was so comforting. 

Lisa also had some newer techniques that we appreciated.  She makes the incision under the breasts, in the natural fold, therefore the scarring is much less noticeable than the traditional across the center of the breast incisions.  Also, she said I was a candidate for "nipple sparing" meaning I could retain my own nipples.  I learned that nipples are considered to be skin and so as long as the cancer is not too close to the nipples, we could save them. 

Lisa went over all of our options.  We listened and so did she. 

I could have a lumpectomy with mandatory radiation. 

Something remarkable about Lisa was that she understood that radiation would be especially difficult for me because I have a gene mutation called MTHFR gene and it causes my body not to methylate properly and therefore it would be difficult for me to process the radiation.  The remarkable part was that she knew that.  Most doctors don't understand the MTHFR gene mutation as it is a relatively new concept to the medical world. 

Having said that, we focused on discussing a mastectomy or a double mastectomy. 

I was very clear in wanting a double mastectomy.  I never once hesitated in that decision. 

My reasoning:

1 - I had a high chance of recurrence given my age, my personal history, and my family history. 

2 - I didn't want to go have scans every 4 months anymore.  No more MRI contrast dye affecting my delicate kidneys, no more mammograms, and especially no more biopsies.  Those things are awful.

3 - I knew of two women right in my own town that had lumpectomies only to have the cancer return and then they both had mastectomies.  I wanted to avoid that route. 

4 - Because my kidney function had been very poor for months, I did not have my routine breast MRI because my kidneys were not able to tolerate the contrast dye.  After my biopsy showed cancer, my kidney function had started to rebound back into the normal range but we still decided the MRI was not a good idea because it might put my kidneys right back to a very poor level and that would not be wise just prior to a huge surgery with 5 hours of anesthesia for my kidneys to process.  Having said all of that, we were not 100% sure that the cancer was completely contained.  We couldn't be totally sure that it wasn't outside of the ducts or even in the other breast.  They would stage the cancer after the pathology came back.  We would not know if I needed chemo until then. 

I didn't want to mess around.  It was all or none for me.

With Dr. Lisa's full support, we scheduled my bilateral mastectomy with right lymph node removal with reconstruction for June 28, 2017.  Life would never again be exactly the same but life would go on. 

This was when the anxiety really set in.