YOU Again?

Well, Crap …

My husband had the champagne waiting in the refrigerator. Two years is an important milestone for staying cancer free and we were going to celebrate. Things look more promising after the initial two years so this is good news. (Many of you know the relief of hitting two years, five years, ten years and beyond). On this day, I went for my two year anniversary mammogram. (I was having mammograms every six months). I was given an all clear! Woohoo! Time to celebrate …. wait, why is the clinic calling me back? Something didn’t look quite right to my doctor once she received the report, but this time it was the right breast. Something looked suspicious and it would need to have another look. Well, crap. The champagne would have to wait. My doctor said that if this new concern turned out to be cancer then it was a new primary and not a recurrence (secondary). Recurrences travel another path (other organs) and do not move over to the other breast. A new primary would actually be the better outcome because no one wanted to see that any of my first cancer had survived.

I was scheduled for a MRI guided needle biopsy…. another big donut hole scanner thingy. This time was different, though. The table I was asked to lay on had two large side by side holes in it. (Many of you have seen these two holes for yourself and you probably caught on faster than I did). Hmmmm. It took me a moment to see that this was going to be different. I would be laying face down this time with my “girls’ delicately placed in those holes. The nurse couldn't have been more supportive as she explained what was about to happen. At one point, she laughed and proudly shared that she was the “model” for those holes. Haha! I was with a celebrity. This scan would provide the imaging to guide them into the area they needed to test and take a sample. Another phone call to wait for.

I told myself that if this was cancer, these breasts were not worth risking time with my family. For ME, a second breast cancer diagnosis would be a turning point. They had to go. I also realized that I might want them gone even if it turned out not to be cancer. I could greatly reduce my risk of any additional future battles and that held incredible value to me. It was not lost on me that if I had chosen a double mastectomy the first time around, I would have avoided this moment. I went home that night and stood in my bathroom looking at my breasts and seeing things from a well earned perspective. The phone call came the next day. Well, crap. I heard the words I dreaded. I would enter another battle.  I was shocked, scared, angry and VERY disappointed.  I wondered why me, but I knew I would never know that answer.  I didn’t have time now for a pity party anyway. What I did know was that God would continue to walk with me.

I felt bad about having to tell my children that our lives were back in the realm of uncertainty. They were both in college now and I worried about what they might feel while I was going through this battle again. They had so much to focus on and I hated to add to their burden. They were supportive and loving. My husband, Scott, would be a valuable source of strength to navigate these waters and help them feel reassured that things were going well. I felt the courage start to rise up because I knew I was stronger now. “Whatever it takes,” I thought.  Friends, I was about to learn it can take A LOT sometimes.

I met with my doctor again, but things were different now.  I was ready to let go of my breasts and what they represented in my life now. Everyone’s choice for treatment for their body is theirs to make. What is good for one person may not be the best choice for another. I would soon learn that I could go into the operating room with breasts and come back out with breasts. A double mastectomy with reconstruction, reportedly a 12 hour surgery. I assumed it would involve implants…wrong. 

Mastectomy and Reconstruction …When Things Go Wrong

My husband and I soon met with a highly recommended plastic surgeon. I discovered that my options did not involve implants after all. My doctor shared that when a breast is radiated, the skin does not stretch and adjust the way it would have normally. What my option really came down to was a DIEP flap which shocked me a bit to understand what that involved. I would have an incision made from hip to hip and my excess material (read FAT here) would be moved up to fill in and shape my breasts. Help me, Lord. I certainly had plenty to donate to the harvest, but I felt my bravery hiccup a bit. After that initial shock, the doctor said many things over the next ten minutes that were a bit foggy, but I eventually heard the words “you might never need to do another sit up in your life”… Annnnnnddddd, I’m back! 

My tummy pooch had been my lifelong companion, no matter how much exercising I ever did. I was intrigued about having a chance to say goodbye to it. Now, I am not trying to sound fearless about the pain that this journey would involve. I am not a fan of pain. I can strangely say that it scares me as much as it hurts me. I can still hear my delivery doctor with my firstborn saying, “Daddy, help get Mommy under control” as a big contraction was building.  Evidently, I wasn't handling them very well. She should have been saying, “Mommy, quit giving Daddy the death stare,” but that is another story for another day. 

I prayed for courage and stepped towards a much bigger surgery than I had hoped for. I know there are plenty of much bigger, riskier life or death surgeries to be endured. I respect all of them and the courage it takes to make these choices and then recover from these efforts. I am saying that for ME, in THIS moment where I was mentally still wrestling with accepting that I had cancer again, I could not imagine a bigger step to take and it scared me. There would be two steps to my surgery. First a double mastectomy would remove as much breast tissue as could be found and then, secondly, the reconstruction would create two breasts from my stomach fat.  I felt as much in transition as a butterfly might feel fighting against the confusing struggle to emerge from the cocoon in a completely different form. I love the quote by Richard Bach, “What the caterpillar calls the end of the world, the Master calls a butterfly.”

The big day arrives and I head to the hospital full of hope and prayers. My children joined family and friends in the waiting area and I felt comforted by their presence nearby. I assumed I would be prepped soon for the procedure, but instead, my husband and I were placed in a room to wait and speak with the reconstruction team. I was instructed to undress to my underwear and put on a robe. Let me paint you a picture now. This is a well-lit room (not the nice ambient lighting of a restaurant, but a “surface of the sun” kind of lighting) with an examination table and two stools on wheels. In comes my reconstruction doctor with a second surgeon who would be helping that day. They both had sharpie markers in their hands and asked me to remove my robe and stand in the room with my arms out to my sides. (Remember the bright lights? Nothing hides in bright lights). 

As I stood there trying to go to my “happy” place, these two doctors sat on stools searching and marking all potential harvest locations and then marked where it would be re-purposed. My stomach, hips and breasts were marked like a map of a battle plan as they gently assessed my potential to donate to the cause. Standing directly behind me, and leaning on the wall, was my poor husband who I prayed would be temporarily blinded.  He, unfortunately, witnessed this marker jamboree and saw all of me in a whole new “light.”   No more hiding any stretch mark or dimple. No, friends, it was all there in bright technicolor. 

My surgery finally started and my family was prepped for the 12 hours of waiting. Well, somewhere in the reconstruction phase of the surgery, my right breast decided it was having no part of this endeavor. It is not often that a breast reconstruction fails, but it does happen. It looked like I would be my surgeon’s second or third in hundreds of surgeries for this to happen. My 12 hour surgery slowly marched on and became a 21 hour battle. Let me repeat that …. 21 hours. (I still feel so bad for my family who slept in that waiting room all night). 

I was moved to my hospital room and rested for five or six hours. I was then taken back into surgery for another seven hours for an issue surrounding blood flow to my problematic breast. In my first surgery, my reconstruction had been completed by adding a flap of skin from my stomach to close the opening. A flap of skin needs to establish a network of little highways of blood flow to sustain it. These connections were not being developed properly in my right breast and this is where my trouble started. I would eventually have a third surgery later that same night, but it only lasted around two hours and was mostly exploratory.  Thirty hours of surgery in two days. My breast was fighting this process and it was winning.

On a happy note, between my second and third surgery, my surgeon found me as I was being wheeled back to my room and told me that this cancer had stayed within the milk duct and did not travel to my lymph nodes. I would not require another bout of chemotherapy or radiation.  I responded, in my groggy medicated state, by reaching for her arm and slurring the words “I LUFF YOU”. No, not once, but about four times I told my surgeon I “luffed” her right there by the elevator surrounded by nurses. Bless her.

I appreciated the incredible effort, though, and the wonderful care I was given. I was placed in intensive care because of the multiple surgeries, heavy load of anesthesia and round the clock observation for blood flow. I had a Doppler type device brought in repeatedly and placed on my breast to detect blood flow rhythmic sounds. So much hope and effort was given to restore blood flow.  I wish my right breast had responded, but it was fighting too hard against us.

As many of you who have had surgeries know, pain medicine helps transition you through recovery.  I spent the first few days in the hospital on some pretty strong pain medicine.  I had conversations with my son and daughter that I will never remember.  My daughter did tell me that, on one occasion, I started singing a song about a fraternity from my college days.  It was not a song I would ever knowingly sing out loud, if you get what I am saying. She thought it was funny, though, and had me repeat it until she could remember the words herself.  She also mentioned that I would occasionally fist pump my upper chest and flash her a peace sign as she left the room.  Soooo, evidently pain medicine opens new doors in my brain.

“I Have An Idea.”

A day or so after my surgeries, I was still having blood flow issues with the flap enclosure on my right breast. My surgeon came to us and said, “I have an idea.”  He mentioned that I might have success if I would be open to using a hand from mother nature, namely… leeches.  (That is when the title to the book in my mind went from “The Breast Story in Town” to “You Want to do What?!”).

Evidently, leeches have been used since ancient times to help with various medical procedures.  In my case, leeches would feed on the flap on my breast and release blood thinners into the tissue which would allow continuous blood circulation and encourage new vein growth.  The targeted area for the leeches would be the oval shaped flap created for closing my surgery procedure.

Now, before I sound incredibly brave, let me say that I had no feeling in the flap itself since nerves were severed in the reconstruction surgery.  I might have made a different choice if I was going to feel everything those ugly creatures were up to.  I agreed to give it a try, again, pain medicine makes you do silly things. The next day a doctor and a nurse walked in my room carrying a glass bowl with a bunch of my new buddies swimming around in there.  I was surprised how skinny they looked to me, almost like big worms.  (If that sounds kind of icky or gross to you, you might not want to read the rest of this.  Go have a cup of coffee and relax somewhere with a good book.  I don’t blame you).

When the time came, a pair of long tongs became the go to fishing instrument for grabbing each of these swimmers. The treatment plan would be two leeches on my breast every three hours.  (That was not a sentence I thought I would ever type).  The first time we attempted to apply a leech, I refused to watch and kept my eyes glued to the TV mounted to the top of the wall in the corner.   I could tell by the discussion that the nurse was new to this as well.  Evidently you have to hold one end of the leech while the other end blindly searches for a good spot to latch on to.  Then the other end is guided to attach itself nearby.  Two leeches, four points of contact which should take around 20 minutes.  I could not feel them attach, but eventually I could feel a very slight pulsating sensation. Once my two buddies were occupied, I still couldn’t make myself look down at them.  Nope.  Not happening.  

After the leeches were in place, I was surprised when my doctor and nurse both left the room. I think I assumed this was good entertainment and they would stay. So now I am a lonely hostess at a picnic wishing it were over.   A few minutes later, my sweet daughter came in to check on me and said, “ooooh, a leech.”   Did you catch it?  A leech?  I asked her how many she saw and when she said, “one, why?” I started yelling,  “Get the nurse!   Find it!  Find it!” 

My friends, evidently when a leech gets full, he detaches to go sleep it off somewhere.   All I knew was that there was a leech who detached early and may still be looking for some action.   Within a minute, it was found in the sheets by my side and I learned a very valuable lesson. I became my own advocate, as every patient should do, and said that I would never be left alone when they were placed on me. I also decided I would suck it up (no pun intended) and watch these little scavengers every time.  

After a few days, the newness of this endeavor wore off, at least it did for me.  I was watching these little guys all the time now. I felt for them because the moment they were happy and full, they would be placed in a liquid and sent to leech heaven.  I had other nurses and doctors come by my room and ask if they could watch.  I remember thinking I needed a velvet rope in the corner and possibly sell tickets.  I soon started telling new nurses how to handle the leeches and giving them pep talks.  There was one funny nurse’s assistant that came in one day so excited she could hardly contain herself.  “I told my husband all about this!   I can’t wait to see it!”  She pulled a chair up by my bed, had her head about ten inches from my breast and she was smiling from ear to ear.   I actually felt concerned that she might not find it as fascinating as she had imagined it in her mind.  Performance anxiety?  Seriously?

On another occasion, late one night, the door opened and my day nurse walked in with the new night shift nurse who was about to take over.  By the look on his face, I could tell he was told about my swimming buddies seconds before he walked in.  He looked like he was in shock.  I can still see his eyes.  (I would later learn that he had been brought in from another floor to take the place of the nurse who was not able to be there that night.)   When he walked in, he went straight to the farthest corner of the room from the glass bowl of my buddies.   The nurse was trying to show him what he would be doing that evening and she finally said, “don’t you want to come over here?”  He responded, “I can see fine from here.”  When she finished the demonstration, I knew that I had to speak up.  I looked at him and said, “I am sure you are a fine nurse, but you will  NOT be MY nurse tonight.”   He looked instantly relieved, clapped his hands together and said, “THANK YOU!” as he ran out of the room. 

Another amusing moment developed when a technician came into my room one afternoon dragging a machine behind him. Thinking it was the Doppler type device to listen for blood flow sounds again, I pulled down my robe to make my struggling breast available to him.   Well, evidently he was just there to take my blood pressure from my ankle.  He had no idea what surgery I had done and by the look of confusion on his face, he also had no idea what he was looking at and why I felt the need to show it to him.  Bless his confused self.

My children would eventually leave for college while I was still in the hospital.  I have always been bothered by the timing of my ordeal. I wanted them to see me home and on the mend before they had to leave, but we don’t always get what we want.  I would finally leave the hospital with the knowledge that my right breast was not going to make it. I would start a new path to letting it die and rebuilding it through three more surgeries.  But, before I move on to talk about that next path, there is one final story I want to share about my time in the hospital that impacted me beyond words.

Human Moments

Within the walls of a hospital, there are many human moments taking place.  These moments are found in heartfelt feelings of fear, sadness, despair, joy, anger or whatever reflects the raw intensity of parts of ourselves that we cannot contain. I had many moments of overwhelming fear and crying was my only release. I battled depression and prayed for strength to accept and find peace with what was happening to me. I was very scared, but trying to see the good in everything and everyone I crossed paths with.

After about a week into my hospital stay, I found myself giving in to a human moment.  Up until this night, I had made a point not to look at my body in the mirror or even glance down whenever I had my gown replaced.  I knew I had been forever changed and I wanted to wait until I was ready to face my scars.   (You can read denial here). 

Around 3:00 a.m. one night, my regular nurse and an assistant came in to check on me.  My nurse that evening was a large woman with an accent I guessed to be Jamaican. She was thoughtful and caring and I loved to hear her speak.   In the dim light of the room, they both quickly noticed that I had been bleeding a bit from my previous leech treatment.  My gown and sheets needed changing and I was taken from the bed and placed on a chair a few feet away.  My gown was removed and the sheets were pulled from the bed.  My nurse was called away at that moment to take care of another matter and her assistant continued replacing the sheets on the bed first before she provided me a new gown.

As I sat there, I felt myself surrender.  I looked down at my body for the first time.  I was instantly overwhelmed at all the stitches and drains I saw.  I had a very human moment sitting in that chair and I felt a wave of sympathy for the parts of myself that had been invaded.  I started to cry.  The assistant noticed my tears and told me everything was going to be okay.  She dressed me and gently helped me get back in bed.  She smiled and patted my arm before she left me and I appreciated her compassion.

A few minutes later, with tears still streaming down my face, my regular nurse came back in the room. As she turned towards me our eyes met.  She instantly tossed her head back and confronted me with a loud challenging, “WHAT?!”   Startled, I started to speak and she said “NO, YOU don’t cry! YOU don’t cry. There are women on the other side of this hallway that will NOT live, but YOU will.   I AM glad you will survive and go home soon and see what God has planned for the rest of your life, but YOU don’t cry.”

I recognized the hurt on her face and I knew she was having a human moment of her own.  My tears had touched a very raw nerve in her. She had a wounded heart that night from witnessing the many tears of women crying as they grieved for their lost time. She loved her patients and she was heartbroken for those that would lose their battle after seeing how hard they fought.  She knew I was going to survive and she wished that future for the others as well.  She gathered herself and came to the side of my bed (I am actually crying as I type this) and she grabbed both of my hands and told me to bow my head.  In the still quiet of a dimly lit room in the middle of the night, this beautiful soul prayed over me with such strength and passion that I knew God was right there using this moment to soothe both of our human hearts. 

Leaning on Others

Sometimes we are asked to overcome hurdles so big that they distract us from the fact that our close family and friends are being impacted and learning to be brave in new ways themselves.  Maybe you have been the patient.  Maybe you have been the one sitting in the chair next to the patient.  If you sat in that chair, I understand that it is a very difficult place to be.  You feel helpless at times because you want to make things better and keep your loved ones from their pain and possibly a very hard path.   

My family endured a lot of fear and worry.  As the patient, it is hard to focus on others because you are the one whose life is being threatened.  Please understand that your feelings matter to us and we will come to see the struggle you are enduring when the fog begins to lift from our eyes.  

When I came home from the hospital, my husband became my nurse and cleaned my wounds, applied ointment, changed bandages and checked drains.  Bless him and his big heart.  After 23 years of marriage, at that time, I really didn’t think there was anything new to learn about him.  I was wrong.  

My body was focused on healing an area that would eventually be removed, but we had to let the process work.  I would have three more surgeries to reconstruct my damaged breast with my back muscle and thigh material (again, read fat here).  Can you imagine the confusion that my mind and body are still trying to deal with?   My left breast is my stomach tissue and my right breast holds parts of my back and thighs. What a team effort.  I hear circus music playing.

When you have fat removed from your thighs to be re-purposed, I can only assume that it must be quite an intrusive task to retrieve it.  A day or two after my liposuction harvest, I noticed huge dark blue and purple bruises on my legs.  I texted my doctor (he probably regretted giving me his personal number) and asked him if at any point in my surgery, did I roll off the table and hit the floor.  I am not sure he found my question as amusing as I did, but he assured me I had stayed on the table.

The dust would finally settle from all of the surgeries. I was left with a body that I needed to reintroduce myself to. I saw familiar parts to it, but they were overshadowed by all of the evidence left behind from trying to live my lifetime. I walked this four year battle tackling both cancers with family and friends by my side. I will always cherish the love I felt and the prayers that carried my name. My older sister, my butterfly soulmate, had been my lifelong guardian angel and she showed me beautiful strength and love. My mom’s hugs were like gold to me and reassured me that there is power in a mother’s prayer. I had an amazing group of friends, angels walking this earth with hearts as big as the moon, who gave of their time and resources to provide food on my doorstep, companionship, phone calls, visits, a listening ear and the human touch of many hugs.

I almost missed this amazing gift of receiving the love and support from my friends. One of them once told me I was a hard nut to crack. I didn’t realize my lifelong battle with building walls was as noticeable as it was. I had given much thought to keeping my battle private and soldiering on with my family for support. What a weight that would have been on them to bear alone. I am glad I opened the gates surrounding my heart and let myself share in the love and support of these strong women who rallied around their wounded friend. I hope many of you have also had friends that support you in times of need. God uses these moments to teach us His desire for us to care for one another. Some of you, though, may not have had the support you needed during hard times and were left to struggle alone. Sometimes our family and friend’s fears can stop them cold from giving us what we need. Sometimes we stay with a choice to soldier alone. I pray you feel the love of the many reading this who wish that everyone could know the blessings of receiving from others in their times of trouble.

My daughter and son, in the midst of their fear and concern, were a healing presence to me through our soul’s connection. My husband’s strength and determination to make sure I was given great care gave me the freedom to focus on healing and on my next steps. He was my rock. I leaned on many hearts and they supported the weight of all of my tears and fears. Most importantly, I leaned on God’s love and grace. He is and will always be my greatest refuge. I hope He is your refuge as well because He wants to be.

Looking Forward

Many survivors charge forth with such courage that they spit in the face of cancer.  They refuse to give it another second of their time and they live with a thirst for life that is unwavering.  While I did feel courage and determination many times, I also found moments where I struggled to accept that I had survived my journey.  That sounds a bit strange, doesn’t it?  All survivors are well aware that some people don’t win their battle who fight just as hard as those that do.  Remission is a blessing beyond words, but many people do struggle with it. Why us?  Why not them? Survivors sometimes need a little time to look forward and embrace what is waiting for them. That is normal. There is a lot waiting, though.

When I was first diagnosed, I called a friend of mine who had already survived two breast cancer battles.  I wanted advice and to know her story of survival.   Her strength was amazing.  She thoughtfully and lovingly advised me and answered my questions.  She was a fierce warrior who had endured chemotherapy in both battles.

One evening at a dinner party, she shared that she had breast cancer for a third time.  This brave woman would again have chemotherapy.  I sat there stunned. Every fear I had fought to overcome in my journey rushed into my mind all at once.  How could this happen?  Why her?  When she and her husband left that evening, she turned at the door and noticed me staring at her.  I will always remember the gentle look on her face as she said, “Janet, this is my journey.  Not yours.”   Bless her for that moment of grace and compassion in the midst of her despair.  

This brave warrior would lose her third battle.  Her funeral was a beautiful celebration of her life. I thought about her strength and I was humbled by the footprints she left in this world.  I pray for peace and comfort for all of the warrior’s families that have to face the same unfathomable loss.

Survivors need to look forward because there is much waiting for you. I want to live a life discovering new layers of bravery within myself and gratefully cherishing every sunrise.  While I have traveled my journey at times with great strength, I have occasionally had an anchor appear out of nowhere and drag me to a slow crawl.  Fear can cripple you if you give it the space to grow.  We survivors owe it to all of those warriors that do not prevail to live a life worthy of honoring them. Faith and fear cannot exist together.  Faith has won over my fear and here we are together in this moment.   How patient my Father is with me.  How patient He is with you.

I choose daily to show up and travel the path before me. Sometimes I fall down on my path. Sometimes I stay too long at a rest stop. But, I always get back up. Where are you right now?   Are you on the side of the road?   Do you think that is where God wants you?  Your life is a gift.  Listen to the voice from inside and do not let anyone or anything slow you down.  No matter what obstacles you are facing, I am here to tell you that you are stronger than you think you are.  Stand up, walk or even crawl down your path.  Will it be scary?  Yes.  Will it be worth it?  My friend, no matter what the outcome, showing up will always be worth it.  Honor the adventure that is YOU!

Thank you for reading my story. I hope you share yours as well because all of our journeys are worthy of being heard.