November, 2001 | Jan Harley

Thanksgiving was around the corner.  I had been driving Nicole to one of her appointments when she exclaimed that her hair was falling out in clumps. I handed her a trash bag and she began pulling out big clumps of beautiful sun streaked blond hair from her head. Hair strands were dancing around the car like butterflies fluttering about a meadow.  I didn’t stop Nicole from pulling her hair out but let her experience this phenomenon free from any comments or judgment.  When she was satisfied with her ritual and realized she was now sporting only a few long wisps of hair on her head, she pulled down the car visor. I noticed Nicole’s big blue eyes welling up with tears.  We both sat in silence as I drove on, both of us with tears gently falling down our faces.

Al was flying in for the Thanksgiving holiday. I picked him up at the Rochester airport and we proceeded to drive to my place to prepare our feast. Despite Nicole’s nausea from the chemo, we wanted to share the bounty with her in the hospital.  We brought her a dinner plate with all the Thanksgiving fixings.  Despite Nicole’s tough time with chemo that week, she willingly ate with approval.  Al would read to Nicole and help her with her homework.  They eagerly played their Game Boys together.  Al would quietly sit with Nicole when she was not feeling well and they would watch cartoons together.  A sweet relationship between the two of them was unfolding.  I was filled with gratitude for this new beginning of another family unit for Nicole.

I dropped Al off at the airport for his flight back to Michigan.  We tearfully said good-bye and held each other for as long as we could before it was time for him to board his flight.  The ride back to my place was quiet and peaceful.  As I drove up 52 north and waited patiently in line for traffic to ease up, I deliberated the next hurdle in Nicole’s treatment.  An oncology team meeting was coming up in which the doctors would determine the progress that her chemotherapy had made on her tumor and what their next course of treatment would be.

The oncology appointment came up fast.  As I proceeded down the sidewalk to the Mayo Clinic building, the cold Minnesota winter wind blew right through me.  With chattering teeth, I observed the Christmas Holiday in full bloom around me.  The Salvation Army bell ringers were stationed periodically at the fronts of store entrances.  Their constant ringing reminded me of my resolve to keep on going.  The downtown area of Rochester was lit up like a Christmas tree with white twinkle lights, red ribbons and beautiful wreath displays sprinkled with multicolored bulbs.

As I walked into the medical building and pushed the elevator button, I closed my eyes and brushed aside any fears that were tugging at me. As I sat in the office I looked up to see Nicole and her Dad walk in.  Nicole was walking quite well on her crutches.  I had made padded armpit covers with material depicting different sports themes.  Nicole helped me pick out the material and we both had fun designing and sewing them.

Soon the entire team of surgeons and oncology staff filed in.  The room was filled up with professionals in all specialties dealing with the treatment of cancer. It was this team of experts sharing their knowledge and strategizing treatment options together that Mayo Clinic is renowned for.  X-rays were promptly put up on the screen for us to view.  I stepped up and looked over the head surgeon to get a clear view of the x-rays.  It looked like abstract art to me with black and gray images of bones with a few dark black blobs the artist left on there perhaps by mistake.

The head surgeon began his discussion, it was soon apparent that the news was not good.  Here we go again I thought; the wave of anxiety slowly gripped my throat and I stood silent as he continued his discussion.  The physician explained to us that the chemotherapy had not reduced the size of the tumor enough to give them a safe clearance or margin away from the growth plate above the ankle in which to simply remove the tumor.  The doctors further explained that if they were to save the leg by removing the tumor without safe margins and the cancer came back at the site of the removed tumor, Nicole would have less than 1% chance of survival.  This prognosis was based on the fact that if the cancer did return, it would be extremely aggressive and would be radically immune to the current and only chemotherapy available to treat this bone cancer. There was also the risk that the cancer would spread and metastasize into her lungs and would eventually become fatal.  There were further discussions of the complexities of removing her tumor from the site and the intricacies of the surgical techniques involved.  Clearly, all the issues were complicated and charged with emotion.

Hearing the information regarding the risk of cancer returning at the site of the removed tumor and a bleak survival rate, convinced me there was no other option than to amputate her leg below the knee.  What an option I thought to myself. How can anyone be expected to willingly agree to remove part of his or her own body? Nicole’s life could not be jeopardized at any cost.  The doctors explained to us that it was ultimately Nicole’s decision to make.

Silence once again fell upon the captivated audience and we retreated from the office in a solemn parade out the door and down the hall.  It was a slow walk through the hospital.  It felt like an eternity.  My heart ached for Nicole and numbness began to fill my soul.  My faith was being tested to new limits I had never experienced before.  I reflected on the saying, “Faith can move mountains” and I hung onto that thought and embraced it like a sailor embracing a piece of wood she found floating in the ocean after the ship had been capsized at sea and the waves were engulfing her.

As Nicole and I walked back to our car together in silence, I delicately asked Nicole what she was thinking.  Nicole told me it was ok they had to remove her leg.  I shuttered at the thought.  She told me she wanted to live and this was the only way to get rid of the cancer.  I assured her this was her decision to make and praised her at how strong and courageous she was.  I told her she was my bold and brave hero and I would be right beside her in whatever decision and course of treatment that would ultimately unfold.

This simple, yet insightful explanation by Nicole, indicated to me that she had already internalized the answer to this problem and she was preparing herself for an amputation.  Nicole somehow innately knew the answer to this very intricate puzzle.  From the innocence of a child comes the wisdom of ages.

In the days to come, the oncology team confirmed their recommendation for below the knee amputation.  The challenge now ahead of us was how to deal with the surgery and subsequent recovery while continuing an aggressive chemotherapy treatment.  The amputation surgery date was set for mid-January.