Vicki Strong, Long Term Thriver
By Vicki Strong, 2/2/20
My journey, as is the case with many leiomyosarcoma journeys, began with a phone call from someone I met just once, a surgeon charged with removing a growth of unknown origin from my body.
In my case, that surgeon was an oral surgeon who used a dental pick to hack away a 3.5 cm mass between my teeth and lower lip that had grown from pea-size in just two weeks. The mass was so large, and had so impacted my lower jaw, that all of my lower teeth had to be removed, too. He later told my local dentist he knew as soon as he started cutting it was nothing he had ever seen before, but he kept going.
And sent me home after three hours (for what was scheduled to be a 45-60 minute procedure), my mouth packed with gauze, about 10% of the growth open and bleeding in my crumbling jawbone.
On Friday afternoon at noon (don’t we all remember the exact day and time the news came?), he called. With no small talk, he dove right in. (Oral surgeons are likely not given a whole lot of training in delivering really bad news.)
“Well, I am shocked and upset. Your biopsy results came back and you have cancer. A very bad kind. You need to find an oncologist. I will see you next Tuesday. If you don’t have any questions, have a good weekend.”
He’s shocked? My first thought was, “I am as good as dead.” My second was, “How do I tell Bruce?” (My husband had just completed his own 16-month trip to hell and back after a diagnosis of acute myeloid leukemia, which put him in the hospital for 160 days.)
On Tuesday, we learned that it was leiomyosarcoma -- rare, aggressive, very high grade, and incurable. The oral surgeon (with the limited patient skills) handed me a brochure from the Sarcoma Center at the Masonic Cancer Center at the University of Minnesota. “It belonged to my (practice) partner’s wife. He doesn’t need it; she is dead.”
As friends and our church family rallied around us, my terror settled into an uneasy fear, even as that little bit of tumor grew back to 3.7 cm. (It left no room to close my mouth, even without my lower teeth.)
My jaw transplant was delayed two months, while a reconstructive surgeon fine tuned his skills, and created a model for my new jaw, a medical-first fashioned in plastic with a 3D printer. (I am written up in medical journals. My LMS claim to fame.)
Prayer circles with many girlfriends, gatherings that involved a great deal of laughter and soft foods (my friends all learned to relish soup and pudding), and watching our first grandchild grow (Emma was four-months old when I found my tumor) helped pass the time. Other than a battery of scans and pre-surgical appointments, LMS took a backseat to basking in the love of those around me.
Soon the night before surgery arrived. A phone call late that night from Patti McClary, an ACOR member and LMS patient I had never met in person (she found a phone number she hoped was mine through the internet White Pages), gave me strength. At the hospital in the morning, my surgical team was warm, and prayerful, and confident.
When I was brought out of a medically-induced coma three days later and my vent was removed, my husband gave me a writing pad and a pen because I could not speak. It was Stage 4, thanks to the carelessness of the oral surgeon, and I was told (very kindly by Dr. Ondrey, one of two ENTs who did the 13-hour transplant of my fibula to rebuild my lower jaw), it was likely just a matter of time before LMS returned. I wrote on that pad: “Miracles. I will have a miracle.” And I had Patti, my first LMS friend.
In spite of my initial hope, five months later, LMS returned, in the lymph nodes in my neck. Another neck dissection (I had one with the original surgery to place a temporary trach) was followed by 36 rounds of radiation that destroyed one salivary gland and my thyroid, and damaged my vocal cords, esophagus, and trachea.
Eighteen months of NED gave my body some time to heal and my ENTs the opportunity to do a little more jaw reconstruction. A year after the transplant, they removed the titanium track that held my fibular bone, now fused and fully functional on its own.
But, two years to the day of my jaw transplant, I had VATs surgery for a single lung tumor in my lower left lung. I think that surgery was harder to accept than the first. And then Patti died two weeks later, saying weeks earlier she was fearful we were both on a “slippery slope.” I vowed to live for both of us.
Four months later came the first of two thoracotomies (three more tumors), and months later, the removal of three ribs, followed by SBRT, for a large tumor that broke ribs 8-9-10. I had still one more thoracic surgery in my left lung pleural lining and diaphragm at the four-year mark in my journey. (My thoracic surgeon thanked me for helping him pay to put his youngest through college.) Then I had an adrenalectomy six months later -- the only tumor that impacted the right side of my body.
I steeled myself for a life of surgeries, the sarcoma equivalent of the game of “wack-a-mole."
That was 7 ½ years ago. And LMS has fallen silent in my body. Once sure I was as good as dead, I have lived exactly 12 years since that day in February 2010, when I heard the words, “It’s cancer. A bad kind.”
I have traveled the US from the Florida Keys to the Pacific Northwest with my husband and our daughter Shaina, and we recently bought a travel trailer to aid our travels, We are working through our bucket list of classic rock concerts. We celebrated the wedding of our son, watched our children mature into kind and successful adults, and (best of all) welcomed five more grandchildren, who are now between the ages of 4 and 12.
The miracle came in finding that my most fulfilling life purpose grew out of my LMS journey.
I have started several church and community programs to meet the physical, emotional and spiritual needs of people with cancer. I served on the board of Leiomyosarcoma Support & Direct Research Foundation and still represent them in many capacities. If you are in our Facebook group, I likely approved your request to join. If you called our hotline, we have talked. If you have ribbons, they more than likely came from my extra bedroom closet. I also facilitate a monthly support group for a regional group in Minnesota, and serve on their PR and communications team. And my favorite: Facilitating a monthly Zoom chat for LMSDR’s new members. The spirit of Patti McClary lives in me as I pay it forward.
I also started a Christian Cancer Support blog seven years ago on Facebook that continues today. (www.facebook.com/groups/keeplookinguppsalm121
For someone who once thought I was as good as dead, life is very good! I owe it to groups like LMSDR and Rein in Sarcoma, but even more so, to the people in these groups. Together, we are doing life on our terms, even when it means clinging to a slippery slope. That, on its own, is a miracle.