Susan’s Cancer Journey
Read Susan’s inspiring journey through cancer treatment, jaw reconstruction and recovery. Learn valuable tips for navigating healthcare with confidence!
30 Stories in 30 Days™ // April 2023
Back in 2005, I noticed a lump in my throat and went to see a local physician. After meeting with an oncologist and undergoing a biopsy, I was diagnosed with squamous cell carcinoma on my tongue. I underwent neck dissection and subsequently began radiation therapy.
I received 40 doses of radiation therapy everyday for eight weeks which felt incredibly intense. While the individual radiation therapy sessions felt short in duration, over the course of eight weeks, the cumulative effects of the radiation left me very tired. The radiation even seemed to slightly affect my hearing. I successfully completed radiation therapy and my cancer did not recur, but in 2009, I was further diagnosed with osteomyelitis – infection of bone – and underwent oral surgery.
About two years ago, I developed an infection in my lower left jaw area. While I did receive antibiotics, this infection eventually resulted in a mandibular fracture and jaw bone necrosis, which would require partial jaw replacement by a head and neck surgeon. I spoke with a periodontist who referred me to experts in jaw reconstruction in New York City. That surgeon took a three-dimensional X-ray, showed me my broken jaw, and meticulously guided my family and I through the next steps. Early last year, I underwent jaw reconstruction using a portion of my fibula.
…the tongue is simply a muscle, and that as long as I continue to exercise it vigorously, then I will regain eating function.
After my surgery, I noticed that I had lots of saliva collecting in my mouth. Fortunately, this saliva did not collect further in my throat. However, pools of saliva collecting in my mouth made it difficult to chew and swallow foods. In addition, during my last surgery, my surgeon had to cut one of the nerves innervating my lower lip and tongue, so I could not feel very much in that area.
Throughout my recovery, I worked with a fantastic team that aided me in regaining my speech and swallowing skills. For several months, my speech and swallow therapist guided me through eating and drinking exercises. The entire team has kept me accountable and encouraged me to continue practicing these exercises. They have taught me that the tongue is simply a muscle, and that as long as I continue to exercise it vigorously, then I will regain eating function. As of now, I have made significant strides in regaining comfort with using my tongue.
I look back on my treatment and can confidently say that I have interacted with the most caring team of healthcare professionals I have ever met. During my care, I learned the following three things. First, I learned that I am a patient for life. Once I began my treatment, I knew that I could continue staying here and receiving treatment, if necessary. Second, I learned that I would work with a team of doctors who specialized in treating patients recovering from oral cancer and radiation treatment. I felt immediately at ease. Third, I learned that I would work with not only a team of amazing physicians, but also exceptional support staff who would empower me through my recovery.
I recommend being very proactive with reaching out and getting as much help as you can.
To this day, I have never felt so supported by hospital staff. At the New York City hospital I frequented, the availability of nurses was truly outstanding—they had a tremendous willingness to answer any and all questions. They listened to my questions, communicated with the doctors, and then relayed the doctors’ responses back to me in a timely manner. Even during the weekends, I would take photos of my jaw to document my recovery progress, and email them to the front office. My family and I would immediately receive a phone call back from the medical staff who informed me that I made tremendous progress in my healing. This speaks to the kindness and generosity of care that I constantly received throughout my journey.
I encourage anyone recovering from cancer to always contact nurses and front office staff. Just email them or call them with any questions! This played such a huge role in my recovery! I recommend being very proactive with reaching out and getting as much help as you can. My family and I now feel confident that we know how to make the most out of our time with doctors.
I strongly believe that if people feel like they are going to heal—if they feel hopeful—they heal better.
During every appointment, we came prepared with a comprehensive list of questions and the doctors we worked with answered our questions with the utmost care and sensitivity. We always had the full, undivided attention of the physicians we spoke with, and I cannot thank them enough for that. I recommend that any patient always come prepared because it is easy to become nervous during an appointment and forget to ask certain questions.
Today, I remain in the process of recovery. I had a feeding tube inserted after my last surgery, but within a couple months, I was determined to have my feeding tube removed and commit to eating only soft foods. In addition, speaking remains quite difficult, especially towards the end of the day, when I feel more tired than usual. However, with the accessible and personable support of front office staff, nurses, speech therapists, and physicians, I truly feel confident after every follow-up appointment. While the commute into New York City is cumbersome, the medical staff we interact with makes the commute worth it!
I want to conclude by encouraging patients to always put themselves out there! If you continue advocating for yourself to receive the best treatment possible, you will eventually meet amazing medical professionals who offer the best support and are a great fit for you. I strongly believe that if people feel like they are going to heal—if they feel hopeful—they heal better.
Interested in Sharing Your Cancer Journey?
For someone recently diagnosed with cancer, reading the stories of other caregivers and survivors can inspire.
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