The call came in around 8:45 am. The diagnosis was stage 2 level 3 breast cancer, triple receptor positive. It was a Monday morning and I was home alone. I knew right when I picked up the phone that it was the doctor himself, no nurse to tell me everything was fine. As I was listening to the doctor, I sat down in my bedroom with the phone at my ear- trembling. I then asked one question, “was I going to die”? I have no idea what the doctor said after that, other than he never answered the question. The rest of the day was a blur.
My younger son was not in boarding school. We told him the night I was diagnosed. He was 11 years old. He too had been suffering because of my arm. The previous year he never knew who was driving him home from school. Between my arm surgeries and physical rehab appointments and then the discovery of the infection, the ramifications that bled through our family were exponential . There was never dinner on the table, I couldn’t cook. I couldn’t drive, I was in bed constantly recouping and coping with pain. My presence as their mom was sporadic and limited. My son would call me after school and ask, ” Mom who’s picking me up today? ” A couple of times I had forgotten to have someone there to get him. I was failing as a mother, the only job I ever really wanted to have. The fear I felt was hideous to me, but the thought of what my children were feeling was paralyzing.
My oncologist was witty and informal which was a relief seeing as though we were there for such a serious reason. I walked in with my husband and the doctor immediately looked over at my casted arm and said in a lighthearted way, “what’s going on over there?” We were off to a good start. He asked me why I had my lumpectomy in Arizona. He said he would have preferred to have done chemo first to shrink the tumor and then surgery. The doctors in Arizona had said the same, but all of the doctors pointed out that the bone grafts on my arm would be destroyed by chemotherapy. Therefore, the decision was made to do the lumpectomy first and buy us some time to allow the grafts to graft.
The lumpectomy would be the first time of many that I had no use of either arm. I was unable to move my right arm from the fusion. It was casted from my fingers to almost my arm pit. The bone grafts on my arm had to stay exactly where they were placed in order to be properly fused. Cancer was on my left breast. After the lumpectomy I had limited movement on my left arm. I couldn’t open a door, bathe, get dressed or feed myself . Putting in my contacts was daunting. I had lymph nodes removed from my arm pit as well so lifting my arm up was not possible. I couldn’t hold a glass to drink. My mom had to hold a straw up to my mouth. Sleeping was almost impossible . I remember laying in my bed at night on my back feeling petrified, exhausted, in pain and confused while desperately wanting to curl up into a fetal position to give myself comfort. The “I couldn’t do’s ” replaced the ” I could do’s”. I couldn’t even wash the hair I was about to lose to chemo. I had gone from being a 41 year old thriving wife and mother with an incredible passion and talent for yoga and other sports to a woman with a fused dominant arm and breast cancer. I had not had a day without pain in almost 3 years. I was the healthiest unhealthy woman I knew.
From October 2012 to March 2013, I had 16 rounds of chemotherapy. I lost all my hair including facial hair, eyebrows and eyelashes. I am 5 feet 9 inches and my weight at the sickest part of my chemotherapy dropped to 98 pounds. In April 2013, I had a mastectomy and then in June that year my first reconstructive surgery. Just 2 months later I had another arm surgery where the metal and screws were removed from my wrist/ forearm . This part of my arm was now totally fused and the hardware was causing my frail arm a lot of additional pain. During these surgeries from April 2013 through December 2013, I continued to have treatments for breast cancer. Starting in April, one week after my mastectomy, I began 12 rounds of a drug called Herceptin that was administered every 3 weeks . I was scheduling chemotherapies around surgeries ! I couldn’t fully wrap my brain around the magnitude of what was going on. I was showing up physically to the surgeries, the appointments, the chemotherapies but emotionally I was dying inside. The days when I wanted to quit were too many. I felt desperate to live to raise my children, but the suffering was endless. My last arm surgery was in August 2013 which brought the grand total to 6. My last breast surgery was in January 2014 and I am not finished with the reconstruction. In total, 12 surgeries in 2 1/2 years and 28 chemotherapies.
My husband had his job and now he had to take over my role as mother, caretaker, carpooler, cook etc. It’s hard to describe the pressure it put on our whole family unit. We were all trying to stay afloat, but there were days where I wondered if people and households could just explode. The tension and pressure was so high. We were trying to function in this new environment and every single day was horribly hard. And as we at home were coping, my son at boarding school was suffering in ways we will never know. I often think about the ghosts of who I used to be and I loved that girl, I’m different now.
My parents were my rocks, my sons out of fear pushed me away, my husband was busy and my friends saved my life.
To be continued………….