At that age time seemed to move so slowly and my thoughts and writings, anything I created, seemed to me to be larger than life. It was right about then, at what I perceived to be the peak of my confidence and creativity, that I was dealt a devastating blow. Cancer. I was diagnosed with osteogenic sarcoma, bone cancer, in the left femur and served one year of intensive chemotherapy at the University of Michigan's Mott Children's Hospital in Ann Arbor, Michigan. My heart is in my throat as I recall sitting with my parents in a sterile office, leg in a cast from toes to hip a short day after a biopsy surgery, being educated on all of the chemo drugs I would be given and all of the horrendous side effects that have ever been reported through the life and use of each. I wanted to transfer myself to the other side of the window I was seated beside and to perch outside on the ledge, sitting in the sunshine like one of the birds there. Then, if I could fly away like them too...instead I sat there and cried. This was July 1991, a month before the start of my Senior year of high school; a year that would largely be spent in the hospital. In that moment I could not imagine how I would survive.
But I did survive. I not only survived, but I thrived, as they say. My initial instinct had been to recoil, to turn inward, circle the wagons and hunker down until the danger passed. Instead I made friends. I reached out, nominated my mother and myself as the welcome committee orienting new patient's to the oncology unit. I used humor and laughter, got to know the nurses, made light of the admission paperwork, was real with my doctor, learned to do "the bridge" while shuffling cards. I lived in community. Thank you Channon Boullion and Tami Lickert Harrison for being my dear friends and family, in sickness and in health, for being active parts of that community. What if I had recoiled? What if I had allowed cancer to shut me down? I would have missed the beauty that lies beyond cancer, beyond 1991, beyond the age of 17. At that time it was like groping desperately, trying to grab something just out of reach as I tried to hold onto my Senior year or the age of 17 and 18. Then to grieve their loss from a hospital room. But there was beauty beyond the safety and comfort of my home in Northern Michigan that year found in the friends and community in Ann Arbor hospitals.
It was an amazing, painstaking journey and a life-changing one. While creativity and writing had taken a bit of a back seat to dealing with side effects of treatment, trying to maintain school work while in the hospital and squeezing in as much of a social life a compromised immune system would allow, my heart and soul turned to music for an outlet. One of my favorite bands in the 80's was a Christian rock band named Whiteheart. Their song "Desert Rose" became my theme song.
"If it's a lonely day, know you're on the Father's way. He will hear you when you cry. He will hold you...your Father will hold you. He will love you...He will shelter you. Desert Rose don't you worry, don't be lonely. Heaven knows in a dry and weary land a flower grows. His desert rose."
I had a CD player in my room at all times. This was before the age of iPods. It was during this time that I also received cards and letters through the United States postal services or "mail", the hard copy that gets delivered by a mailman requiring paper, envelopes and stamps. This was before the day of email, or at least for me. I didn't have email until I went away to college.
Those days of life bald and hospitalized, sick and unsure; the era of handwritten notes and face to face encounters seems a life-time ago. As I recall it now, it seems like a different world altogether.
Time went by and then I turned 40. Many years later and with a lot of amazing and interesting things to happen in the mean time, but I'll get to all of that later, I turned 40. I remember when my mom was 40. Actually, I can remember when my mom wasn't yet 30! And here I was, turning 40, holding a 3 month old child in my arms. This babe, nothing short of a miracle, was not supposed to be. One of the side effects of each and every chemo drug I had taken (and had received a lifetime dose of each within that year) reported the side effect of infertility. My son whom I held, my sons surrounding me, all four, each a God-given gift. It amazed me and completely baffled me. Where had time gone?
And then I turned 41. I turned 41 and I had not yet gotten over the fact that I had turned 40. It was a difficult transition for me for some reason. We all see ourselves through misty, foggy or distorted lenses. We judge ourselves based on criteria and expectations spoken over us when we were young or ideals we ourselves determined somewhere along the way. We take joking words or mindless observations spoken and make them important facts about us that must be reckoned with. For me, that was what it meant to turn 41. All of the "over the hill" jokes and "growing old gracefully" commercials were facts I was facing and I didn't feel gracious about it at all. In fact, I struggled.
Marriage and children had continued teaching the lessons of grace and love that I had known about through parents example and in theory during my earlier years. I tried to be a good student. I began to write again in order to gain perspective on my changing life and to share any insight or lessons learned with friends and family. Soon events would come about that would continue to shape the way I felt about and experience growth and change. It was January of 2014 and my mom, Mimi to my children, was diagnosed with breast cancer. It was a shock and something that took me a long time to get a handle on. (Not to say I "handle it" at all times, but have learned to be calm in the midst of the storm.) My parents displayed such a deep sense of peace and rest in the midst of this news. They prayed and waited and weighed all options before deciding on an all-natural approach to treating her cancer. This was not easy for me to accept. After all, when I was diagnosed with cancer it was a matter of 2 days before a port had been placed and chemo had started. I wondered where then was their sense of urgency. There is much more to the process and I've chronicled many of my thoughts and feelings in previous posts. But the long and short of it is, I watched as my mother very consistently and determinedly managed her diet, exercise, supplement regimen and other forms of natural health care. I learned from her discipline and care of herself. I watched my father support her and love her deeply through researching her diagnosis and treatment options, and by staying close to her side through it all. (As I yelled from the sidelines, "Start chemo! Get a mastectomy! What are you waiting for?!" I've since apologized for my frantics.)
It was probably around Christmastime 2014 when I came into the grace of growing. I believe there is grace for us every step of the way in our lives. When I say "I came into the grace of growing" it is because this was a significant moment of change in my journey when I accepted "grace" for myself, grace as Webster's defines it as "ease and suppleness of movement or bearing". At that time I looked at my four beautiful boys playing together in our cozy living room. These healthy, happy, energetic children that were given as gifts to my husband Pete and I. Any lost sleep, stretch marks, c-section pain or scars paled in the light of such a sight. Peaceful perspective. I began to recount all of the blessings in my life: healthy and loving family, faithful friends, employment, Church community and the list went on. This was not the first moment of profound gratitude in my life, I've experienced that time and again, however this moment held a specific message for me regarding growing and aging. My book was not yet written. This beautiful story of love and grace, of peace in the midst of storms, of blessings and babies, had many chapters yet to fill and in that moment I experienced clarity and contentment at the realization of my place in life and time.
And it was around Christmastime that I had pain in my right breast. I imagined I had caught an elbow from one of those beautiful boys I reveled over at a Christmas gathering. The pain went away the next day but a persistent husband asked me to follow up with the OB/GYN. Much of the following events have already been recounted in this blog as well. My first mammogram, breast ultrasound, meeting with a surgeon, biopsy and resulting cancer diagnosis. I was admittedly a little bitter. Hadn't I just turned a corner emotionally even perhaps matured a little in this journey of life? How could another cancer diagnosis in this life be possible?
Last week I received my first chemo treatment at The Block Center in Skokie, IL. Following in the example my parents had set, Pete and I took time to gather information regarding my diagnosis and treatment options. It was an important process as we sought peace in the midst of decision-making and in the selection of our health care/treatment team. We found that peace at The Block Center where they take an Integrative Approach to cancer care. My nutrition, physical activity and emotional state of mind are all considered as well as the cancer diagnosis and conventional chemotherapy treatment. It was during this first treatment for my second primary cancer diagnosis that I learned that I have a mutated cancer-suppressor gene, a syndrome called Li-Fraumeni Syndrome. I am just beginning to learn about this syndrome and what it means for me and my family. At this time I understand that my risk for breast cancer with this syndrome was 3x the average risk. It puts a lot in perspective regarding the sarcoma I had in my teens and now the diagnosis at age 41. Throughout the learning process I will be sharing my thoughts and experiences here. As I have said before, my book is not yet written. There are many more pages to fill. For now, I am present this moment and have come to realize I am unable to handle anything more than that. I have found even praying for my "daily bread" to be a little overwhelming these days. My prayers have been moment by moment.
But I know there is beauty in each moment, each day. I know there is beauty beyond, around and within a cancer diagnosis and a mutated gene. It is for me to see that beauty, to know it, experience it and write about it. I haven't lost sight of the lessons I've learned and know that all the chapters I've lived to this day have served to inform and equip me. I will continue to grow gracefully and to share the beauty of this life.
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