Wednesday, November 12, 2014

Knowledge Is Power



Once I received the benign results of the biopsy, I felt as if the weight of the world had been lifted from my shoulders.  I was really looking forward to spending the days leading up to my surgery as stress free as possible.  I wanted to get as much done around the house and at work because I was not sure what to expect following the surgery.  The plastic surgeon emphasized the importance of adhering to the six week lifting restriction as well as taking time to recover.  We were getting ready to celebrate the marriage of my sister-in-law Betsy to her wonderful fiancé on Friday, June 13, 2014.  I am so thankful I was able to help Betsy and her bridal party with decorating as well as really enjoying time with family and friends. 

After the wedding, we returned home on Saturday, June 14, 2014.  As I was in Holden’s room hanging up clothes, a noticed a AA battery at my feet.  I was not sure where the battery came from but I immediately picked it up off the floor so I did not have to worry about Layton choking on it.  At that moment, I felt an overwhelming urge to check on Layton.  He is a very busy boy and he gets around the house rather quickly.  I went to our room and found Layton getting ready to put a battery in his mouth.  In the short time I was in Holden’s room, Layton found the remote and unfortunately the back of the remote fell off, allowing him to access the batteries.  In the four years Holden has been in his room, not once have I found a battery in there.   I firmly believe Mom is our personal guardian angel and she was there in that moment protecting Layton from harm’s way.   The battery scenario brought back memories when Holden fell in the 4 ½ window well in October 2012 and miraculously walked away without any injuries.  When I shared this story with my family we agreed Mom is working overtime to protect her grandchildren!  I could hear her say, “You guys! Seriously?  Do not let anything happen to my grandchildren!”

I could not wait to have my surgery!  I had the date circled, starred and highlighted on my calendar at work and at home.  I was not afraid of the pain because I knew it would be temporary.  I was really excited to rid myself of the fear of breast cancer and I was excited to really start living!   I was only 10 years old when Mom was diagnosed the first time so the thought of reducing my lifetime risk of developing breast cancer was the most liberating feeling.  I promised Mom I would be proactive and I knew she would be watching over me during the surgery and recovery.   

Sunday, June 15, 2014 was father’s day.  We celebrated all of the wonderful men in our lives by hosting a barbecue at our house.   It was a lot of fun to relax and hang out in the hours leading up to my surgery.


We had I slept really well the night before my surgery.  I embraced sleeping on my stomach because I was not sure how long it would be before I would be able to comfortably sleep on my stomach following the surgery.  I was at peace as my head hit the pillow.  Rochelle, Scot and the girls were planning on staying at our house to take care of the boys.  Dad and Deanna made a special trip so they could be at the hospital during my surgery.  My mother in law and Dena Bartlett made plans to meet up and to be at the hospital during my surgery as well.

I had to check in at the hospital at 5:30 a.m. as I was scheduled for surgery at 8:00 a.m.  We set the alarm for 4:00 so we could allow ourselves plenty of time.  I could not believe how relaxed I was.  I figured the nerves would set in a bit but honestly they never did. I was so thankful to be given the opportunity to have preventative surgery rather than waiting for cancer to strike.  Josh, Dad, Deanna and I left our house as planned and headed to the hospital.  We got to the hospital and I got checked in.  We were directed to the surgery waiting room where we waited along with several other patients and their families.  As we were waiting, I gave paper copies of the blog to Dad, Deanna and Josh.  At that time, I had approximately 12 entries typed.  Initially I set a goal  to have a majority of the blog done so my family could be distracted during my surgery. 

I got called back to the pre-op room and was prepped for surgery.  I still was not nervous!  The pre-surgical nurse that was assigned to me was incredible.  We connected right away and we shared stories of our families.  She teared up as she shared the story of losing her daughter only a few years prior.  She told me she was going to look for me in recovery because she felt a strong connection with me.  I lost count of the number of doctors, residents, administrators, assistants, etc. that came in and out of my pre-op room.   I continued to remain relaxed and to embrace the chaos as Lilly pointed out in a prior email.  Once I was settled in, Josh came back to hang out before surgery.  I asked him how Dad was doing and he said he did not make it through the first page of my blog without crying.  I felt bad because the goal was to distract my family not to make them cry!

In my mind, I kept replaying a line from another email from Lilly about the big event that was planned for me.  Often times you hear stories about people having near death experiences and getting a tour of heaven.  I was not hoping for a near death experience but I thought possibly Mom would come to me in a dream while I was having surgery.  Unfortunately this did not happen but thankfully the surgery was uneventful and it went as planned. 

The last thing I remember is the anesthesiologist putting the mask over my face and telling me to have a nice nap.  It seemed like I was out for only a short time when I was awakened to the sound of a man moaning.  It took me a few minutes to figure out where I was at.  I remember asking the nurse for my husband.  A few minutes later Josh was at my side and I started coming out of the anesthesia.  The nurse informed me I had been in surgery for approximately 7 hours.  I immediately thought about how anxious Dad must have been during my surgery.  Josh said the staff did a great job of providing periodic updates during the surgery.   I do not have a good track record with anesthesia so they took extra precautions and time with me in recovery.  Whatever they did worked wonders because not once did I feel nauseous.  I remember feeling incredibly sore.  My chest hurt something fierce but I kept reminding myself the pain was worth the mental relief. 

I could not help but notice all of the moaning that was going on in the recovery room.  There was a gentleman to my right that was moaning and just as he would let up, the gentleman to my left started up.  It is almost as if they were feeding off of each other.  I laughed and told the nurse I did not expect her to respond to my comment.  She smiled and asked what I had to say.  I said, “Men!”  She laughed hysterically.  She desperately wanted to respond but knew she couldn’t.  After about an hour in the recovery room, I was stable enough to be moved to my assigned room.  The nurse told me to hit the button on my pain pump one more time before they wheeled me out of the recovery room.  As I was being transferred to my room, we stopped by the waiting room to pick up Dad and Deanna.  Linda and Dena had left the hospital once they found out I was doing well.  Dad and Deanna followed us to my room.  I absolutely dreaded being moved from the gurney to the bed in my room.  I was in a lot of pain and I was questioning how they would successfully get me from one bed to the other without creating more pain.  I stared panicking a bit and just then I felt like I was in a hammock and was being swung into my bed.  That was the first time I found myself in tears.  It was the most excruciating pain I have ever experienced.  I was put in a Tropicana room for recovery purposes.  When Dr. McGinnes told me she ordered a Tropicana room she assured me there were not palm trees and pina coladas!  The room was set to 80 degrees to promote active blood flow.   I do not like being hot so between being and pain and the room being 80 degrees, I was uncomfortable.  I tried to keep the big picture in mind as I fought the pain.  I was so thankful the surgery was behind me and I felt more empowered and liberated than ever!

My hospital stay went really well.  I ended up staying two nights.  When people would call and ask how I was doing I told them it was definitely more painful than I anticipated but it was worth it!  It was nice to be home with the boys and to have our family under one roof.  Rochelle and Scott stayed an extra day to help out.  The boys had a great time and they enjoyed all of the fun being with Rochelle, Scott and the girls.  It was comforting having a nurse in the house who I could turn to for help with the drains as well as questions regarding all of the medications I was on. 

Josh assumed the care taker role with ease.  He did not hesitate to jump in and take care of me during my recovery phase.  We adapted the method of organizing all of my medications similar to way Dad handled Mom’s.  We kept a piece of paper by all of the bottles of medication and kept a detailed schedule of what time I took which medication.  I could not believe all of the medications I was prescribed.  Generally, I am one who will only take a couple Tylenol per year so it was a bit intimidating being prescribed six medications at one time.  I was definitely on some heavy duty medications during the first few weeks of my recovery.   I spent a majority of my day resting and occasionally working on the blog.  I also got caught up on the boys scrapbooks.  My personality does not allow me to sit around and do nothing.  I wanted to keep my mind busy so the transition back to work would not be as difficult.   The most challenging part of recovery was not being able to be as involved with the boys.  I could not pick up Layton and I did not get to spend as much time with the boys during the day. 

Prior to my surgery, Josh, Bryson and Holden signed up for family camp weekend with the cub scouts.  They planned on leaving Friday, June 20 and would return on Sunday.  Josh’s mom, Linda came over to our house to help out with Layton and to keep me company.  We had a nice weekend visiting and I greatly appreciated the help.  I was happy Bryson and Holden were able to go camping with Josh.  Mom’s theme of normalcy definitely rubbed off on me.  I did not want the boys to feel like we could not do normal family things because of my surgery.  I wanted them to be busy being kids rather than sitting around the house worrying about me.  Being the patient and a mom rather than the care taker made me appreciate Mom’s emphasis on normalcy.  I wanted my boys to be happy and carefree.  I had Mom to thank for her ability to emphasize normalcy during her multiple illnesses. 

Our family, neighbors, friends and “friends of friends” took great care of our family in the days and weeks following my surgery. A meal train was put in place by my friend Gloria and the wonderful women at her church.  We were provided with delicious home cooked meals.  Our family, neighbors and friends also provided us with meals, groceries and other acts of kindness. 

I had an appointment with Dr. McGinness one week after surgery.  It felt really good when she reported the pathology came back clean following the surgery!  I did not anticipate the pathology to come back positive but you just never know.   Throughout Mom’s experiences and Rochelle’s experience, I learned to expect the worst and hope and pray for the best. 

My recovery was fairly uneventful, however, I had minimal problems with the left surgical drain.  The right one was draining how the doctors explained the process but the left one was not following suit.  The left drain was not putting out as much as it should and the color was a lot darker than the right side.  Rather than following up with my plastic surgeon two weeks after the surgery like we previously planned, I had several unscheduled visits at the plastic surgeon’s office due to the potential infection.

Early one morning I was reading through my email and I was excited when I saw I had a new message from Lilly.  Her email was in response to the one I sent after I found out the results of the biopsy.  She let me know she is happy for me and God is good!  The second part of her message is as follows: “I do have to say, I feel that you may have another baby in the future which could have been why there was such indifferent energy when we first met.”  Her email brought a smile to my face.  I shared the message with Josh and he just smiled and playfully shook his head in disbelief.

During the reading Lilly kept having visions of Mom walking with a little girl.  She could not tell whether the little girl was me or somebody else.  I thought about this a lot and talked with some friends.  One friend thought it could have been an image of the daughter I longed for and another friend suggested it could be a symbol of me being able to live a worry free life as I should have when I was little.  We are happy with our three boys and we feel our family is complete.  We learned through Rochelle’s situation if a baby is meant to be than it will happen whether or not we plan on it.   I like to tease Josh by reminding him he never liked to argue with Mom.  I recently found this picture of me when I was little. 



Once June 24, 2014 I called the nurse at my plastic surgeon’s office because the left drain was continuing to not properly drain.  She told me to come in at 9:00.  We had very little time to get ready and to arrange for a babysitter so we took the boys with us.  Josh stayed with the boys in the waiting room as I was examined by the doctor.  The doctor was glad I called but reassured me the drain was not problematic but he encouraged me to continue to keep a watchful eye on it.  As we were walking out of the plastic surgeon’s office, a maintenance worker turned off his vacuum and talked to us as we were passing by.  He said, “You have three boys?” I responded by saying yes and I am the “queen bee” of our house!  He pointed to the sky with his right pointer finger and said, “You need to have one more baby.  It will be a girl.”   Josh and I were speechless and we looked at each other and smiled.  We try to not read too much into things but this chain of events makes us wonder whether a daughter is in our future.  We joke and say if we were to try we would probably have twin boys.  We know it is in God’s hands and we are at peace with whatever happens.

About three weeks after my surgery, my drains were removed.  The drains were not as bothersome as I had anticipated but I was glad to get rid of them.  I was nice to check that portion off of the list and move forward with the next step—the expansion process.  I received my first fill on Tuesday, July 8, 2014.  I arrived at the plastic surgeon’s office expecting to have an ultrasound on the left side due to the fluid that had been building up under my skin rather than draining.  When I showed up he looked at the area and decided there was no need for an ultrasound because the fluid had reabsorbed into my body.  While I was there he asked if I was ready for a fill.  I was anxious to get my first fill out of the way because I was planning on returning to work on Wednesday, July 16, 2014. 

Before the nurse came in to do the fill, I asked the doctor if there was any way I would be able to have my replacement surgery on October 13th.  At first he said he thought that would be pushing it but he also said it was not impossible.  He requires the last fill to take place two months before the replacement surgery.  He said I would have to get to my desired size in a short period of time in order to allow for the two month waiting period.  I emphasized how much it would mean for me to have my replacement surgery on the two year anniversary of Mom passing away.  I felt it would be very symbolic to start a whole new chapter in my life on the anniversary of Mom’s death but I also wanted to complete the process when my body was ready rather than rushing it just to hit an self imposed deadline.  He looked at his calendar to see if October 13, 2014 was available on his calendar and he reported he only had one other surgery scheduled on that day.  We agreed to revisit the issue in a few weeks.

I made each appointment on Friday afternoons at 3:40 p.m. so I would not have to miss work and so I would have the weekend to recover.  The filling process was a lot more painful than I anticipated.  I really started questioning my pain tolerance through this process.  I read other women say they had no problems or pain through the process while other women compared it to childbirth.  I assumed I would fall right in the middle of the spectrum but I was closer to the childbirth scenario rather than the “pain free” scenario.  

The plastic surgeon filled me to 350 cc during the surgery.  He said it is a delicate balance of having the woman wake up feeling whole again versus the pain level.  The more saline he puts in during surgery the more pain the woman will be in when she wakes up.   It felt as if a truck was sitting on my chest after surgery and during the weeks following surgery.  I was just starting to feel somewhat normal then my first fill took place.  He suggested stating with 25 cc on each side then working up to 50 cc.  I wanted to have a little more “volume” when I showed up to work so I asked if he would allow 50 cc on the first fill and he agreed.  I was a little nervous for the fill but I was also excited to get it out of the way so I knew what to expect in the upcoming weeks.  The nurse found used a hand held device to locate the magnetic ports in the expanders.  Once she located the ports she marked them with a purple pen and inserted a large needle into the port.  Once the needle was in place she filled the expander with saline.  I no longer have feeling therefore the procedure was not painful.  As she was filling the expanders, I told her I felt like “the Rock.”  My chest felt tight and my upper back started to spasm.   
I really struggled with the first fill.  That evening I told Josh I might just stop at 400 cc and forget about the rest.  I was in so much pain and the medications did not seem to do much.  Every time I stood up gravity worked against me.  I have never experienced a heart attack but I am wondering if it is similar to how I felt during the fill process.  After about 4 days I started feeling better.  I dreaded the next fill because I did look forward to feeling bad for another 4 days.  The nurse put in 60 cc during the next appointment and it was more uncomfortable than the first round.  I was miserable for 5 days.  At the following appointment I reported how miserable I had been for the last 2 weeks and she agreed there was no need to rush the process. We backed off to 40 cc on each side and I was prescribed a different muscle relaxer.  The combination of less fluid and a different medication did the trick.  I felt much better and I found a new sense of determination and energy to get through the next appointments. 

After approximately one month the nurse suggested I meet with the plastic surgeon so he could evaluate me and to make sure I was proportionate.  When I met with the plastic surgeon he agreed I was proportionate and asked if I was comfortable stopping the fill process and scheduling my replacement surgery.  He explained he orders three different sizes of implants and tries them out during surgery.  He explained different sizes and shapes look different on every woman and it makes the most sense to have a variety to choose from during surgery.  I trust him whole heartedly and agreed it was time to schedule the surgery.   He explained the surgery is an outpatient procedure and I would not have drains.  He also noted another six week lifting restriction would be ordered and we discussed the importance of not lifting more than 10 pounds following the replacement surgery.

He remembered our conversation about October 13th and he said he still had a spot open on that day.  I asked him to pencil me in and I would have to check my calendar at work to make sure there were no conflicts with trial dates.  The following day I checked the trial calendar and I was disappointed when I saw an out of state trial starting on Monday, October 13.  I emailed his nurse and asked her to schedule my surgery for the Monday before Thanksgiving.   I thought the timing would be perfect given the Thanksgiving holiday.  I would only have to miss three actual days of work rather than five.   The nurse confirmed my surgery and I circulated an email to everyone at work to let them know. 

One Friday afternoon at work my boss and I were talking about the chances of the October 13th trial actually taking place.  He estimated a 50% chance of it actually going forward.  In the next sentence he said the client would never pay for a paralegal to go to trial therefore he and the other attorney on the file would be the only two going.  I asked him whether or not he would be comfortable with me scheduling my replacement surgery for October 13th and he said, “Absolutely!  Get it scheduled!”  I was so excited.  He has been on this entire journey with me and he knows how special and symbolic it would be for me and my family.  I emailed the nurse and asked her to switch my surgery day.  I received a call that evening at home confirming October 13, 2014 was still available for my replacement surgery!  I had the date scheduled for a couple of months but my doctor and I agreed it would be best to delay my surgery until December 8, 2014.

 I feel as if Mom has been by my side guiding me through this process.  I know she is smiling down from heaven watching me go through this journey.  Mom felt guilty about being a carrier of the BRCA2 mutation.  She prayed so hard that neither Rochelle or I would have to ever experience breast cancer.  I am so thankful she insisted on us getting tested and being proactive with our health.  I highly doubt I would have gotten genetically tested had Mom not pressed the issue.  I used to put my head in the sand and maintain “ignorance is bliss” but with I was able to take charge of my life and have the preventative surgery thanks to modern medicine and Mom’s persistence!  Mom saved Rochelle’s life and my life.   I now see that her early death was purposeful and it was part of God’s master plan.  During Mom’s illness I wanted to know why everything was happening the way it was.  It was hard to understand why such a young, vibrant woman was being denied the chance to live and to see her grandchildren and great grandchildren grow up.  We still do not have all of the answers to our questions but I know our faith is stronger than ever and I have developed a relationship with God that I never knew existed.  Along with our faith and modern medicine, Rochelle and I have been given the chance to be mothers to our children.  Who knows how long Rochelle would have gone on before discovering her cancer but thanks to her fulfilling her promise to Mom to be proactive, mammography detected Non-Hodgkin’s Lymphoma in her left axillary.  Who knows if I would have been diagnosed with triple negative breast cancer at the age of 36 like Mom was.  The doctor at the Breast Cancer Prevention Center told me, “more times than not, daughter’s follow in their mother’s footsteps.” 

The last string I found was on June 2, 2014, two weeks before my surgery.  The timing of finding the random strings were perfect each and every time.  I felt a sense of peace and comfort when I would find them.  I honestly feel the strings were from above and they were the physical signs I needed to get though a stressful time.  Since my surgery, I have had a whole new outlook on life.  I no longer dread and fear breast cancer.  Instead, I am excited to see what each new day is going to bring and I want to help empower other women to be proactive with their health.  Mom’s light continues to shine and I want her legacy to live on.  Her life and death were purposeful and even though she is not physically here her spirit is present in my life and my family’s lives every day! 

On August 10, 2014 we walked in the Komen Race for the Cure in Kansas City.  Our team, Hakuna Ma-TA-TA’s raised over $10,000 in the fight against breast cancer.  Despite the rain the morning of the race, we had a great time walking three miles in downtown Kansas City along with approximately 20,000 other participants.

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