How my story begins: Early in 2021, I began to have very slight issues with swallowing. It was noticeable to me, but not painful. I was busy going about my life, so I ignored it. In March I began to have some pain in my left ear and a little swelling in my lymph nodes. I went to urgent care and with great confidence, the doctor declared that I had a blocked salivary gland and it would almost certainly resolve on its own. Well, It didn’t resolve on its own and it took until mid-November to get an accurate diagnosis.
Life before my diagnosis: Prior to my diagnosis, I was a happy, healthy 56-year-old single mom. I was looking forward to retirement in a few years. I enjoyed cooking (and eating!) and singing. My youngest son was 18 and halfway through his senior year of high school. I had recently bought the house next door to my 84-year-old mom, with the intention of being close to her to help her in her later years. There was no cancer in my family and it was definitely not on my radar.
How I felt after diagnosis: I was sitting alone in my car when I received the news. I had just had a CT scan and surgical biopsy. I got a notification from my medical provider’s patient portal. I opened it and saw the words: squamous cell carcinoma, base of tongue, HPV 16 positive. There was a large tumor primarily on the left side of my tongue, crossing the midline over to the right. Multiple malignant lymph nodes on both sides of my neck.
I was stunned. How could this be happening to me? What did I do to cause it? What will treatment be like? Will I be disfigured? Will I still be able to speak, sing, eat? Am I going to make it to my son’s graduation? Am I going to die?
Telling my family and friends: My mom, my boyfriend, and my best friend were aware of my diagnosis right from the beginning, as I had kept them in the loop through the diagnostic process. My sons were 27 and 18 when I was diagnosed. I knew this would be devastating news for them, so I decided to wait until I knew what my prognosis and treatment plan was before telling them.
I will never forget that day. I sat them down and told them everything I knew. My oldest son was typically stoic. My youngest son burst into tears and sobbed inconsolably. I quickly tried to explain that this type of cancer is very responsive to treatment and that I was going to be OK. He later told me he heard nothing I said after the word, “cancer”. The inevitable discussion about HPV came later.
My treatment: My treatment plan consisted of 33 daily radiation treatments (with weekends off) and six rounds of chemotherapy (Cisplatin) to be done weekly.
I remember being very concerned about side effects from chemo. My oncologist looked me right in the eye and said, “It’s not chemo you need to be worried about, it’s the radiation that will be difficult “. He said he created a very aggressive treatment plan and that I needed to brace myself and commit to completing it. I had no idea what I was in for.
Treatment started January 3, 2022. It was very lonely. Because of COVID, they allowed only one person with me at my initial consultation. After that, I was alone at every treatment and every appointment. The first two weeks were a breeze. In the third week, I began to lose my sense of taste and fatigue set in. By week four, I had to have my mom or my boyfriend drive me to appointments. By the fifth week I was not able to eat or drink anything. I was hospitalized in February. I was so weak, they had to suspend treatment briefly and I completed my last chemo and final three radiations in the hospital. After two weeks in the hospital, I was still not able to eat and was sent home with Total Parenteral Nutrition (TPN) through my chemo port.
Over the next several weeks, I endured DVT in my left leg and lungs and MRSA infection in my chemo port. I was hospitalized again for a week in April for sepsis. I lost 55 pounds all together and was very weak.
How I felt after treatment: Out of absolute necessity, I returned to work in May. My chemo port had to be removed, so I struggled mightily to eat and drink enough to sustain me. I would get home from work and immediately fall asleep on the couch. Getting back to “normal “ has been a long, slow process.
What was most difficult for me: I was very disturbed at the thought of not being there for my sons and my mom. I was pretty confident from the beginning that I was going to beat cancer, but the subsequent pulmonary embolism and MRSA/sepsis scared me badly.
It was very difficult going from being a healthy, independent woman, to a sick person, depending on others for my basic needs. The transition back to the “normal” world after treatment has also challenging.
My life after cancer: On May 24, 2022 I had my first follow-up PET scan. Results were as follows: “1. Favorable treatment response with near complete resolution of previous hyperbolic mass at the left posterior base of tongue. Minimal residual metabolic activity may represent post-treatment inflammatory changes versus residual neoplastic disease. Recommend attention on follow-up imaging.
2. Near complete resolution of previous metastatic left cervical lymphadenopathy.
3. No new metastatic disease”
While this is a good result, I have not fully relaxed. I don’t know when or if I will be free from worry about reoccurrence.
Where I am today: I’m very glad to be alive! I made it to my son’s graduation! I have a new appreciation for life and rarely say no to new opportunities. I regularly attended concerts, flower shows, art shows and anything else that brings me joy.
I’ve been able to maintain my weight. It’s a struggle to eat 1500 calories a day, but I manage. I don’t enjoy eating anymore, but still have hope that I will some day. My speaking voice is okay most of the time. Singing is out of the question for now, but I’m working on it. Otherwise, I feel almost normal most days.
How I will try to help others: Throughout my treatment, I found myself thinking that I needed to do everything in my power to keep others from going through this hellish experience. I had a very basic understanding of HPV and related cancers. I knew I wanted to help, but had no idea how to get started.
On October 21, 2022 I boarded a plane headed for Memphis and to the first HPV Cancer Survivors School. It was a tremendous experience which gave me the tools and support to start my patient advocacy journey.