Dear Friends and Family,
December 2019 marks 10 years since I wrote my last holiday letter. This year I am breaking through my writer’s block and re-establishing this tradition. Here is why I haven’t written. After my last letter in 2009, I was diagnosed with high-grade soft-tissue sarcoma in my left thigh the volume of a softball. I would spend the entire next year fighting myxofibrosarcoma made up of mean pleomorphic cells. I had a 40% chance of surviving past 5 years.
2010 was filled with two surgeries, twenty-five rounds of radiation and six 21-day cycles of chemotherapy. Chemo side effects resulted in three blood transfusions and five trips to the hospital. Kayla was in 7th grade when we received my diagnosis and in 8th grade when we finished chemo.
While I was in no shape to send a holiday letter in 2010, I found it hard to write a letter the next year too. How do you keep the cancer experience from monopolizing the letter when it is monopolizing your family’s life? Each time I began composing my holiday message, I wanted to share the life lessons I had learned from fighting cancer.
We learned to accept help from others and to express our fears and needs. We cannot adequately express how grateful and blessed we are for the help, prayers and support we received from our friends, work colleagues, church and family. All the love we received inspires us to share our story and help others facing similar challenges. In fact, I have been leading a Sarcoma Support Group at UT Health San Antonio MD Anderson Cancer Center for 9 years.
Many people ask what is sarcoma? Sarcoma is cancer of bones, muscle and connective tissue. Sarcomas are rare yet there are many varieties requiring different treatments and research. I had adult soft-tissue sarcoma and these sarcomas make up less than 1% of new cancer diagnoses each year.
While we were recovering, Kayla had a successful high school and college experience, and she graduated with a Bachelor’s in Biology this past May from the University of Texas. While at Texas, she joined Texas 4000 for Cancer and rode a bicycle from Austin, Texas to Anchorage, Alaska. A new group of UT students make the ride each year after training 18 months for the 70-day ride. This was Kayla’s victory over my cancer. Kayla’s Texas 4000 experience helped heal our family as she shared with us and her peers what it was like to be a 13-year old when her mom was fighting cancer. We are so thankful to the wonderful families who adopted Kayla, giving her their love and support when Mike and I had to be focused on cancer treatments. Kayla expressed it best when she said, “I want to ride so little girls don’t have to worry about losing their mothers.”
Mike’s mom died of breast cancer, and her experience had a large impact on me. Bernice endured harsh radiation and chemo treatments in the early 1980’s. She meticulously followed the doctor’s after-cancer regimen of maintenance drugs and received clear chest x-rays results. Eight years later, she and the doctors found her original breast cancer had spread and had ravaged her ovaries. Bernice was angry – she had done everything she was supposed to do. I regret Bernice and I never really said goodbye. I felt speaking of death with her was not allowed because she was so fiercely intent on not letting the cancer beat her. Seven weeks later, Bernice had a stroke during chemo leaving her completely paralyzed, unable to move, eat or speak. It felt like her unresponsive physical body was trapping this intelligent woman’s mind in a jail cell. Bernice died a few weeks later.
Sarcoma chemo treatments in 2010 were still using the harsh drugs from the 1980’s because of the rareness of sarcoma and the lack of drug development. One could go to a dark place equating my diagnosis with a death sentence. I chose a different outlook. I had utmost confidence in my orthopaedic oncologist who was my surgeon and primary cancer doctor. I did whatever he said to do for my leg, and I asked everyone to pray my cancer did not spread. In the roughest days of chemo, I learned to let God have control. I remember asking God, was I so stubborn that I had to go through surgery, radiation and chemo to give up control.
Being part of a monthly support group with other sarcoma survivors really helped me heal emotionally and cope with the chronic side-effects. I am inspired by the faith and courage of my fellow survivors, both those still fighting and those now cancer-free.
Because I have chosen to remain involved as a volunteer in the cancer community, I do face times when cancer takes a life. I have tremendous respect for how medical professionals treating cancer patients must deal with patients’ dying, and as a cancer survivor, I need to live life without fearing the cancer will return. After my cancer treatments, I heard a song that has become my touchstone, and I would like to share it with you in hopes it will give you peace with whatever you and your family may be facing.
In March 2012, one of our charter Sarcoma Support group members, Bernie Magnobosco, passed away after living with sarcoma and participating in Phase 1 Clinical trials. I really started listening to “Psalm 91” by the Mark Swayze Band on my way to Bernie’s funeral. I played the song over and over connecting to how it said, “He walks with me in times of trouble”. For the next few years, I listened to the song at least 15 times a week and it became my personal prayer. I would listen to it repeatedly in the car as I drove to and from cancer tests and doctor visits. It is referred to as the “Soldiers’ Prayer”. I interpret “Psalm 91” as I and others, including doctors, nurses, caregivers and everyone fighting cancer, as soldiers on the front line. When the song reaches its pinnacle of “I will not fear”, for me that is I will not fear the cancer returning. When I listen to it, I am calm and open to receiving those prompts from God as he fills my heart to do good things as his instrument. “Psalm 91” gives me peace and courage to go out of my comfort zone and live life for today for none of us have control of what may come into our lives tomorrow. It keeps me centered so I have strength to be there for others in difficult times and it reminds me to put myself in God’s hands.
In 2019, we celebrated Kayla’s college graduation and we also celebrated my walking again after having a titanium rod inserted into the length of my femur bone. We have learned the greatest riches are the memories you make with your family and the positive impact you make on other people’s lives.
May your 2020 be filled with many happy memories.
Vicki and Mike Shapiro
At YouTube.com, you can find “Psalm 91 Mark Swayze Band” and see our family’s story in the “2018 Texas 4000 Tribute Feature Film”. My thanks to the “Curtain Up Cancer Foundation” offering their “Voices of Recovery” workshop to cancer survivors helping me break through my writer’s block.