Embrace the Chaos

My consultation with the breast surgeon was March 18, 2014. I was very nervous for the appointment because the reality of the surgery finally hit me. I had been thinking about it for approximately 18 months and I knew there was no other choice. I was excited to meet the surgeon and to get a surgery date on the calendar. Josh and I went to the appointment together so we could both have the opportunity to ask questions and to make sure we were both confident in the doctor I was referred to. Within seconds of meeting Dr. Marilee McGinness, I knew she was the perfect surgeon for me. Her bedside manner is phenomenal and I felt extremely comfortable with her. We talked about the different kinds of reconstruction and the timing of my surgery.

Dr. McGinness is a breast surgeon and her objective is to remove as much breast tissue as possible. She explained that nothing is 100% but by having this surgery, I would significantly reduce my chances of breast cancer from 94.5% to less than 5% during my lifetime. She is very meticulous and she said she would take as long as she needed to be sure she removed as much breast tissue as humanly possible.

Dr. McGinness listened to what I wanted and she suggested going with the skin sparring prophylactic bilateral mastectomy with reconstruction. She explained that the breast tissue would be removed, however, the skin from my breasts would be saved for reconstruction purposes. Once the mastectomy is complete, the plastic surgeon comes in the operating room and performs his portion of the surgery.

There is another type of surgery several women opt for called DIEP flap, however, I did not feel this was the right surgery for me. DIEP flap is a type of reconstruction in which blood vessels and the skin and fat connected to them are removed from the lower abdomen and transferred to the chest to reconstruct the breasts without the sacrifice of any of the abdominal muscles. From what I have read, this surgery can last up to 12 hours. Often times, women are sent to the burn unit ICU for the first couple days of their recovery. One major advantage of having this surgery compared to using implants is not having to have replacement surgeries in the future. Implants have a certain lifespan whereas the fat and tissue are there for life. Another advantage is the “tummy tuck” that comes with DIEP flap surgery. The fat from a woman’s stomach is used to reconstruct the breast leaving behind very little extra fat on the stomach.

One of the beauties of modern medicine is choices. I am thankful we are given options so we can choose what suits our needs. I felt more comfortable with using implants rather than the DIEP flap procedure. We discussed the surgery and Dr. McGinness provided a referral for a plastic surgeon.

I was hopeful I could get a surgery date in April 2014 but that was not the case. I was only six months post-partum and I had quit breastfeeding for only two months. Dr. McGinness explained that she likes her patients to be at least six months past breastfeeding because the pre-surgical diagnostic tests can show false positives due to the hormonal changes that take place during pregnancy and breastfeeding. I was adamant that I wanted to have surgery sooner rather than later due to the fear of developing breast cancer. My sister in law was getting married on June 13, 2014. Dr. McGinness suggested I wait until after the wedding therefore we agreed on June 16, 2014 providing the date worked with the plastic surgeon she recommended.

Following my appointment with Dr. McGinness, I met with the scheduling department so we could keep moving forward. I was referred to a very talented plastic surgeon, Dr. Ponnuru. My consultation was scheduled for April Fool’s day. We all laughed a bit when this date was proposed. The date happened to work with Josh’s schedule so we booked it. I typically prefer female doctors but I went into the appointment with an open mind. There are several plastic surgeons to choose from and if the consultation did not go well I could always opt for another.

One requirement before the surgery could take place is a comprehensive pre-surgical diagnostic work up. I told Dr. McGinness I was more nervous for the pre-surgical work up than I was for the surgery. I do not do well with unknowns so I knew getting through the testing process and waiting for results was going to be very stressful for me. I had to have a mammogram and breast MRI before the doctor would agree to do surgery. Even though my surgery was for preventative purposes, they had to rule out any presence of cancer. It was surreal when I booked my mammogram and MRI because they also scheduled me for a biopsy “should I need it.” I appreciated how thorough they were but it made me extremely anxious to see “biopsy” on the calendar containing my appointments. I was hopeful I would not need the biopsy appointment. I really dreaded Friday, May 9, 2014 because that was the day the diagnostic tests would take place.

The morning of April 1, 2014 seemed to drag on. I was hopeful I would connect with the plastic surgeon and I was anxious to see whether or not June 16, 2014 was available on his calendar for my surgery. Josh and I sat in the waiting room for almost an hour before my name was called. Once we got back in the room, the nurse greeted us and took my history. Dr. Ponnuru walked in with a clear container. He introduced himself and he said, “I brought in my dessert tray.” He opened the container and inside of it were several saline and silicone implants! Josh and I laughed and we both agreed he was a good fit. I really liked his sense of humor and I felt comfortable talking about “everything boobs” with him.

Dr. Ponnuru explained he and the breast surgeon work together. Dr. McGinness performs the mastectomy and Dr. Ponnuru reconstructs the area by using tissue expanders. Once the breast tissue is removed, Dr. Ponnuru inserts tissue expanders (balloons) into the skin. The expanders, which are made of cadaver skin, have ports in them so saline can be filled to inflate the expanders. Dr. Ponnuru explained he would fill the expanders during the surgery so I would not wake up completely flat. Dr. Ponnuru informed us I would have a six week lifting restriction and needed to make arrangements to take off at least four weeks of work. The lifting restriction meant I would be unable to pick up my kids for at least six weeks but they were my main motivation for getting the surgery in the first place.

He and Dr. McGinness have worked together several times in the past and they seemed to have a lot of confidence in one another. At the end of the appointment Dr. Ponnuru confirmed his availability on June 16, 2014. In fact, when he opened his calendar, my surgery was already noted on the schedule thanks to the pro staffers at Dr. McGinness’ office.

The breast MRI is very sensitive therefore they try to schedule it around a woman’s monthly cycle. Due to the nerves leading up to the mammogram and MRI, my cycle did not come as planned. You have to be within a certain window before they will perform the MRI otherwise the false positives are rather high. I called the nurse early in the week leading up to my tests. She agreed that I was outside of the preferred window therefore my mammogram and MRI were rescheduled to May13, 2014.

I took off work on May 13th because I knew I would not be able to fully engage following my tests. My first appointment was scheduled for lab work. My doctor ordered a full panel so she could see where all of my numbers were. Thankfully the only thing that came back low was my Vitamin D level. Once all five vials of blood were drawn, Josh and I made our way to the next appointment for my mammogram. I opted to have the 3D ultrasound because the state of the art technology allows the radiologist additional views and it significantly reduces the call back rate.

They called three of us back from the waiting room to the changing room. We were each given a gown and a key for a locker to put our personal items in. I had a hard time figuring out the gown. It appeared as if one of the ties on the inside of the gown was missing. I asked another woman for help and she too had the same problem. We did our best to cover up and we both entered the holding room.

In the past, the holding room has been full of quiet, nervous women. Generally, nobody talks to one another and we each anxiously wait for our name to be called next. When I entered the holding room I couldn’t help but notice a women who was talking (and talking and talking). It was a nice change of pace. As soon as I sat down, a woman beside me asked me if I was having problems with my gown. The wardrobe malfunctions seemed to be a great conversation starter as well as a decent distraction.

Typically I am the youngest woman by at least 10 years. I always feel as if I have to explain why I am there so the other women do not unnecessarily feel sorry for me. As I was telling my story, an older woman, approximately 80 years old asked if I would like some water. I took her up on her offer. Unfortunately she also received a gown with a missing tie. As she was walking back to hand me my water, the front of her gown came open and there were her girls! As she handed me my water, her name was called. She told me she would be praying for me and I thanked her for the water and prayers. I was happy for the distraction and for a moment, I almost forgot why I was there.

The woman who was talking when I entered the holding room continued to talk. She went on and on about everything under the sun. She had on the brightest colored purple sweat pants along with the lovely pink gown that matched the rest of ours! As she got up to throw her cup away, I couldn’t help but notice a long, aqua colored string on the left side of her rear! I literally laughed out loud and then covered it up with a fake cough. I thought of Mom’s humor and I immediately felt a sense of peace. I wanted to grab the string off the back of her pants and add it to my growing collection but I refrained from doing so. My experience in the holding room was out of the ordinary and it was one of the most laid back experiences I have had compared to my prior appointments. Shortly thereafter, my name was called.

I was somewhat tearful during the mammogram due to my nerves. I shared my story with the tech and at the end of the mammogram she gave me a big hug and told me she felt I was doing the right thing by opting to have preventative surgery. The techs are not able to say anything regarding what they see (or do not see) during the mammogram. In the past, I would go back to the holding room and wait for the nurse to tell me my test was clear and to schedule my appointment for another 6 months. When the tech sent me on my way I asked her whether or not I would get the preliminary results that day like I had in the past, rather than waiting for the card in the mail. She told me I would not receive the results on that day and I should get a call within the next 24-48 hours. I desperately tried to get her to budge and give me more information but she did not. I left with a sick feeling in my stomach.

Once the mammogram was complete, Josh and I went to the MRI suite for my final appointment. I had only had one MRI in the past and I did not particularly enjoy it. The only way to get clear images is to lay on your stomach and stay completely still for 30-40 minutes. The tech was a wonderful woman. I expressed my nervousness and I shared my history and Mom’s history with breast cancer. She comforted me by telling me she was a breast cancer survivor of 10+ years. She explained a small spot was detected during a breast MRI. They caught the cancer in its earliest stage, therefore she had a lumpectomy and radiation. In order to get through the MRI without having a nervous breakdown, I repeated songs in my head and tried to think happy thoughts. Once the MRI was complete, Josh and I left the facility.

During our ride home, I told him the mammogram tech made me nervous with her comments. We agreed it did no good to worry about things out of our control. We hoped and prayed for good news so the surgery could go on as planned. I had high hopes of receiving clear results so I could really enjoy the three weeks leading up to June 16, 2014. That evening I sent an email to Lilly to let her know about the aqua colored string. She replied to my email that evening. She reminded me purple is a very significant color in my life.

I returned to work at my normal time on Wednesday, May 14, 2014. I prayed so hard for a call indicating all my tests came back clean. I was looking forward to getting home that evening so we could celebrate Holden’s 4th birthday and my clean tests! Shortly after 11:00 a.m., I received a call from the nurse at Dr. McGinness’ office. As soon as I answered the phone, I could tell she did not have good news to report.

The nurse reported the radiologist saw a suspicious spot on my left side that was picked up on the mammogram. I was trying to comprehend the information when all of a sudden she reported a suspicious spot was also detected on my right side during the MRI. I had a hard time catching my breath. I could not take in all of the information because I was overwhelmed with the shocking results. The nurse told me she had calls to the diagnostic department to find a date and time to get me in for follow up tests. I begged her to get me in as soon as possible so I did not have to play the waiting game.

As I was waiting for a call back from the nurse, I rang my boss and asked him if he had time to visit. Normally he is the one buzzing me but this time the roles were reversed. Mike came to my office and he could tell I was upset. I did my best to relay the information to him about the call I had just received about my diagnostic tests.

The nurse called me back to let me know I had an appointment for Thursday, May 15 at 1:00 p.m. for a follow up mammogram and an appointment at 2:30 p.m. for an ultrasound. She explained to me that if both tests came back negative, I would still have to have an MRI guided biopsy. I was not excited about this but I trusted the process. I was thankful for the quick turnaround time but I wanted to go to the clinic that afternoon. It seemed like an eternity to wait 26 hours. She did a great job explaining the results of both the mammogram and MRI. I put her on speaker so Mike could hear what she had to say. I was still in shock so I was not fully listening and comprehending what she was saying. After the detailed phone call with the nurse, Mike and I spoke a bit longer. He said he could tell the nurse knew what she was talking about and his instincts were telling him I was okay and they were just being thorough given Mom’s history. I felt better once I calmed down. Mike told me to take the rest of the day and to take off as much time as I needed.

I took Mike up on his offer and went home for the day. I accessed my radiology reports online and read them over and over. I typically try to stay off of the internet with medical concerns but I could not help myself. I researched every unknown medical term contained within the dictated reports of my mammogram and MRI. I wanted to be aware of the medical lingo so I could ask meaningful questions at my follow up appointment.

I had a sense of peace but I was nervous about my follow up appointments. Josh took me to my appointment the following day. I did my best to keep busy around the house until it was time to leave. As we were parking the car at the clinic, I shared an email with Josh that I received from Lilly on March 24, 2014, which would have been Mom and Dad’s 35th wedding anniversary. We did not talk about their anniversary during the reading so when I received the mail from her on March 24th I was once again taken back. Amongst other things, Lilly told me in her email “Things will not go as you plan them. Things will be crazy and the schedule will be constantly changing. Embrace the chaos and know there is something great headed your way.” Lilly pointed out she had no idea what the “something great” was but she kept seeing visions of a whole new chapter for me. When I shared the email with Josh, he was shocked. We talked about how things were not going as I had planned. My initial appointment was May 9th but it was changed to May 13th. I did not think I would get a call back or need the biopsy appointment but unfortunately, I ended up having additional appointments. Josh admitted the content of the email was spot on and he was once again in awe by the accuracy of the information provided by Lilly.

Josh and I walked into the familiar office to check in for my repeat mammogram. As I was checking in one of the receptionists said, “You look familiar.” I told her that I was just there two days prior and I got a call back. She had me fill out some forms and she told me my name would be called soon. When my name was called, I headed back to the dressing room and put on one of the pink robes and entered the holding room. The room was rather full that day so I sat in the only chair available. I was nervous but I also knew I was in good hands. Just then I looked down and on the side of the chair was a long white string. Finding the random string was exactly what I needed. As soon as I found it was as if all of my worries were put aside. I took it as a sign from Mom telling me everything was going to be just fine. I can’t really explain it but it was almost as if I could feel her arms wrapped around me. That is just what I needed in that moment.





As I looked around the room, I noticed I was once again the youngest woman by several years. Rather than sitting there in silence, I burst out, “Have any of you ever gotten a call back?” Several women spoke up and confirmed they had gotten call backs in the past and they ultimately got clear results. I then shared my story about choosing to have preventative surgery thanks to the knowledge I was given by genetic testing. Every woman in that room turned to me and all eyes were on me. I felt my palms get sweaty but I also felt a strong desire to talk about Mom. One woman got up from her chair, walked over to me, put her hand on my shoulder and asked the room to join her in prayer! It was truly a very moving experience. As soon as the prayer was concluded with “Amen” my name was called! I thanked the women and walked back with the tech.

Once again I was a bit tearful during the mammogram. When I walked in the room the area of concern was blown up on the computer screen for me to see. The tech had a calming demeanor and I felt completely comfortable. They repeated the mammogram only on the left side. After the mammogram was over, I was directed back to the holding room. I desperately wanted the nurse to tell me they could not find the spot on the repeat exam. The nurse called my name and took me to the dressing room area to give me the report. She said the radiologist looked at my films and he ordered a follow up ultrasound on both the left and right side. I was sickened by the news. In my mind it was clear there was something wrong. I excused myself and went to the waiting room where Josh was. I was crying and I told him, “I am convinced I have breast cancer!” He reassured me and patiently waited. Once I got back to the holding room there were some new faces. One woman had tears in her eyes and she told me she heard my story and she let me know she would say some extra prayers for me.

My name was called a short time after for the bilateral ultrasound. I took my iPod back to the room with me so I could listen to music during the exam. When I had ultrasounds every six months for monitoring, the exam would last approximately 40 minutes. The ultrasound tech was very nice. She let me know the radiologist did not think there was anything to be concerned about on my left side but he wanted to triple check with the ultrasound.

When she was done with left and right side she told me she did not see anything but of course the radiologist had to read the images. She told me not to be paranoid if the doctor comes back in with her to discuss the results. She also told me to try not to worry if the doctor decides to rescan the suspicious areas because in 99% of cases they rescan the area so they can see it for themselves. The tech left the room and I sat on the exam table praying for good news.

The power of prayer is amazing! The doctor came in and told me the suspicious spot on the left side was nothing. He also reported the spot on the right that showed up on the MRI was not found on the ultrasound! I was so relieved I cried. I am usually not a crier until well after the fact but I was so relieved I could not contain my emotions. The doctor told me it was great news the spot on the right didn’t show up on the mammogram or the ultrasound but because it was picked up on the MRI protocol called for an MRI guided biopsy. I was informed that the spot on the right side was “microscopic” and the MRI has the highest false positive rate. He felt fairly confident the spot was hormonal and he estimated there was a less than 10% chance it was cancer. He further said in the off chance it was cancer, it is so small it would have no impact on my lifespan. Generally the treatment for stage 0 breast cancer is a lumpectomy but with my upcoming surgery there would be no need for treatment should it turn out to be an early form of cancer. The MRI guided biopsy was scheduled for May 22, 2014. I felt really good as we pulled away from the facility. We left with the best possible news and scenario. I was not excited about the biopsy but once again I trusted the process and the doctors.

My dear friend Dena offered to take me to the biopsy appointment. She picked me up at work on Thursday, May 22nd. When I got in her car she handed me a large bag full of items. The first thing I pulled out was a beautiful purple running jacket. She said she swore the jacket was dark blue but agreed it definitely was purple. I told her the story of purple being significant and how her giving me a purple jacket on accident was no coincidence. We joked and said our moms are probably high fiving each other in heaven.

The biopsy was uneventful. I went in hoping the spot that was detected on the MRI on May 13th was in fact hormonal and it would not appear during the biopsy. The nurse told me she has experienced that scenario on more than one occasion so I remained hopeful that would be my outcome. The first phase of the procedure was to locate the area so they could perform the biopsy. When the doctor entered the room he reported they found the spot so they were going to move on with the procedure as planned. I was crushed but I told myself the biopsy was a character builder. I kept thinking of how Mom would have handled the situation. I was able to find a positive by thinking of other women I would be able to help by offering my experience with the biopsy.

The biopsy was not painful at all. The doctor did a great job of informing me of everything that was going to happen before he moved on to the next phase. As he was numbing the area he told me it was going to hurt. I informed him I had two C-sections so a little bee sting was nothing. The biopsy was over before I knew it. I continued to lay face down until they told me I could move. During the entire procedure I could hear the doctor’s voice. I imagined him being middle aged so much to my surprise, when I turned my head and looked at him all I could think was “Dr. McSteamy!” He told me the suspicious area was linear and he agreed it was small. He also told me that the results would not be available until the following Tuesday due to the Memorial Day Weekend. The nurse told me they got clear margins and the suspicious area was completely removed during the biopsy. I was told a nurse from the MRI department would follow up with me the following day to see how I was doing.

I returned to work on Friday, May 23, 2014. Around 2:00 p.m. the University of Kansas showed up on my caller ID. I did not have the nervous pit in the bottom of my stomach because I assumed it was the nurse from the MRI department following up. The woman on the other end of the line was a nurse but not the nurse from the MRI department. Instead, Dr. McGinness’ nurse, Mary Jo called with excitement in her voice. The first thing she said was, “Great news! The biopsy results are in and it is benign!” Mary Jo told me she had been watching my case all day because she knew I did not want to wait the long holiday weekend wondering what the results would be. As soon as the results were posted she went straight to the findings and dialed my number. I was very appreciative she let me know so I could enjoy the long holiday weekend.

I really feel our series of unfortunate events happened for a reason and I am on a mission to spread the word about being proactive. Shortly before my pre-surgical workup I spoke on the phone with a woman by the name of Leslee. One thing led to another and during our conversation we started talking about our families. Leslee’s teenage daughter is a non-Hodgkins lymphoma survivor and her mother passed away from breast cancer at a young age. I immediately jumped in and shared our story of Rochelle being non-Hodgkin’s survivor and Mom’s battle with breast cancer. There are many parallels and I felt a connection with her. Her name is spelled “Leslee” and Dad’s given name is spelled “Leslie.” I proceeded to tell her about my upcoming surgery and she was really intrigued. She asked me several questions and I gave her the information to the breast cancer prevention center.

A few weeks later I made a follow up call to Leslee in order to obtain some documents. I could tell she was not engaged about the case and she wanted to pick up where we left off during our prior conversation. She shared with me that our conversation had an impact on her and she decided to schedule a mammogram. She told me there is something in my voice that grabbed her attention and she felt our paths crossed for a reason. Unfortunately a spot was detected on her right breast. At this point it is benign but they want to monitor it every 6 months. She was in tears as she was telling me her story. She said it was because of our conversation she decided to make an appointment. Leslee let me know I am on her mind constantly and she is praying for me. I feel really blessed and fortunate to be able to take our experiences and make other people aware of the importance on being proactive.

Below are the lyrics and a link to the song “You Won’t Let Go” by Michael W. Smith. I heard this song for the first time a few days before my biopsy. I felt an immediate connection to the message the song delivers. This is the same song I listened to during a portion of my ultrasound on May 15, 2014.

https://www.youtube.com/watch?v=MRb_NIQTzyAhttps://www.youtube.com/watch?v=MRb_NIQTzyA

No shadow comes without the light making a way
No raging storm can ever defy one word of faith
My heart remains sure in the wind, sure in the waves

You are the anchor for my soul
You won't let go
You won't let go
No matter what may come I know
You won't let go

No valley low, changes the truth
So I'm not afraid
You hold me close
You lead me through and light up the way

You are the anchor for my soul
You won't let go
You won't let go
No matter what may come I know
You won't let go
You won't let go

Neither life, neither death,
The highest high, the deepest depth
Nothing can
Nothing can separate
Neither tears, neither trials
Certain as the sun will rise
Nothing can
Nothing can separate

You are the anchor for my soul
You won't let go
You won't let go
No matter what may come I know
You won't let go

My heart remains sure in the wind, sure in the waves, always