Susan’s Cancer Journey

Susan // 30 Stories Campaign™ // Oral Cancer Awareness

In May 2020, right in the heart of the pandemic, I found myself facing an unexpected journey: I received a diagnosis of oral cancer. I saw my dentists every 4–6 weeks however during one of my visits I expressed discomfort on my left gum. My dentist completed a brush biopsy that initially came back negative. I was relieved this area showed no cancer. However for some time, the pain and discomfort continued in that area of my cheek. This prompted me to be my own advocate and researcher to try to learn more. I found a local ENT who specializes in the mouth and he confirmed my worst fears. I had cancer.

Fortunately, we caught it early, and within four weeks of my diagnosis, I underwent my first surgery. The procedure involved a left buccal resection to remove the cancerous section from my inner cheek and a marginal mandibulectomy to remove part of my jaw bone.

The fear of a recurrence haunts me… We live three months at a time, wondering what the next scan will show.

After surgery, my physicians debated the next treatment steps. They sent my case to the tumor board, a group of doctors from a variety of specialties. They were divided on continuing with radiation. Eventually, we opted for a conservative approach. Yet, eight weeks later, they found evidence that disease was still present. As a result, they need to approach my situation more aggressively. I had a left mandibulectomy, removal of my left jaw, and a fibula free flap, taking bone from my leg to reconstruct my jaw.

In addition to these efforts, my medical team recommended that I follow up with a combination of advanced medical procedures. This involved adjunctive chemotherapy (a type of cancer treatment using medications), radiation (using high-energy waves to target cancer cells), and immunotherapy (boosting the body’s natural defenses to fight cancer). Among these was a high dosage of cisplatin, a powerful chemotherapy medication known for its effectiveness against cancer, along with 33 separate sessions of radiation treatment. Each of these treatments, while aiming to combat the cancer, came with their own intense side effects, affecting my body in various challenging ways.

Moreover, because of the adjunctive radiation, I had to have a second mandibulectomy on the right side due to osteonecrosis, a side effect of the radiation treatment. Wanting to spend quality time with my family before another surgery, I delayed it. However, my physicians stressed the urgency as my right jaw’s condition worsened. Failing hardware on my left side had exposed and compromised the first mandibulectomy.

You have to make the most of every moment, cancer or not. Time is so short for all of us.

Currently, my medical team monitors my condition closely every three months. The fear of a recurrence haunts me, even as recently as my last visit. A suspicious PET scan thankfully came back negative, but it really tested my strength.

Almost four years from my initial cancer diagnosis, the threat of recurrence never leaves us. We live in a state of “scan anxiety,” always wondering what the next scan will reveal and if I can endure another procedure. We live three months at a time, wondering what the next scan will show. Will it be positive? What will the next procedure entail? I’m left wondering: “can I endure this?”

Unlike what we see on television and in movies, I have never asked any physician for a timeline of my life expectancy. I didn’t feel having that conversation would benefit my goal to live the best I can one day at a time. I have felt this uncertainty slowly reveal a silver lining. It motivates me to cherish every moment.

You have to make the most of every moment, cancer or not. You have to claw and grab for anything that resembles normalcy. Your new normal. Time is so short for all of us. As a result, I have come to internalize this idea of living each moment to the fullest.

Support groups offer an amazing environment to find quality advice and personal insight.

For anyone starting this journey, maintain your sense of humor—it’s crucial. Laughter helps to dissipate my grief, fear and sadness. My husband and I often use dark humor as a form of catharsis, joking about being stuck in a burning building, for instance. While this type of humor might not be everyone’s cup of tea, it provides us with a way to face our situation with a bit of levity and joy. It is very much like the Carrie Fisher quote: “If my life wasn’t funny it would just be true, and that is unacceptable.”

I advise against diving too deeply into “Doctor Google.” Instead, wait to discuss the results from a lab or imaging scan with your doctor—that has certainly proven beneficial to me. Connecting with others through online support groups has also helped, though it’s important to approach these interactions with a positive mindset. Support groups offer an amazing environment to find quality advice and personal insight.

My husband, Matthew, and I… When one of us feels down, the other is always there to lift us up.

Lastly, I would suggest asking your physician to recommend mental health resources . It’s easy to overlook this. So, I really emphasize that you seek a professional who can focus on your mental health so you can continue treatment in a positive direction.

Throughout this journey, my husband and family have been my beacon of hope. My husband, Matthew and I complement each other perfectly. When one of us feels down, the other is always there to lift us up. I remember hoping during my radiation treatments that I would make it through to watch my sons graduate, to see my daughter turn 30, or to watch my middle daughter earn a Master’s degree in England. Celebrating their graduations and my oldest child’s milestone birthday was a highlight for us. In July, we will travel to see our middle daughter accept her degree from The University of Manchester, all a testament to the motivation they continue to provide me.

My family’s support was crucial in keeping me going. My children’s incredible resilience fills me with pride, yet it also breaks my heart and brings guilt. I never intended to expose them to harm, but I’ve learned the importance of granting oneself grace in these moments. Despite the guilt I feel for the stress and sadness my condition may have caused my family, my husband especially reassures me that my presence brings immense joy to their lives.

I remember my husband cleverly acting as if I were hard of hearing to the security and nurses. This ruse allowed him to accompany me for hospital treatments, skillfully bypassing the hospital’s strict COVID protocols that otherwise made the experience isolating.

This experience has brought our family closer, especially my relationship with my husband.

Matthew would drop me off for chemo and radiation, never leaving the parking lot for the entire five hours, despite our home being about 15 minutes away. He has been a constant source of support, from attending appointments to providing emotional comfort.

Spending time with my family has brought me immense joy and happiness. Traveling together over the new year was a highlight (see picture below). Making memories and spending time with them is what I cherish most. Matthew often says, “Every morning, I wake up before my wife, and my greatest joy is seeing her, sharing a coffee, and giving her a hug.” This experience has brought our family closer, especially my relationship with my husband.

My husband has been my steadfast support.He ensured that I never felt alone, accompanying me to every doctor’s appointment and treatment. He has balanced his career with being a caregiver and works primarily to support our family. Fortunately, he has an understanding employer who allows him to prioritize my treatments.

We take life one day at a time… focusing on the present moment.

For him, family comes first, emphasizing that love must prevail over challenges. Out of this experience, he has considered changing his career to become an oncology nurse. Our life together is a rollercoaster of moment-to-moment experiences, where we find joy in family, the people around us, and the life we live together. “There is no greater honor than caring for your loved one,” he says, offering calm and support through both good days and bad.

We take life one day at a time, one hour at a time, focusing on the present moment. Despite the uncertainty that has become our new normal, adapting day by day allows us to find joy and even “dance in the woods.”