Marisa’s Cancer Journey

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

In September 2023, we celebrated our 39th anniversary in Cape May, NJ. We headed down to the shore for some total relaxation as the summer crowds had left for the season. We have done this since our children went to college. While there, Gene shared with me that he must have bitten his tongue in his sleep. He began rinsing with salt water and while it brought some relief, it wouldn’t heal. 

Fortunately, within a week or so we were due for our annual checkups. Our doctor suggested Gene have a biopsy since his tongue had been in pain for more than 2 weeks. So, Gene went for the biopsy. During the time it took to get the results, I was convinced that it would come back negative as the sore had appeared to heal. 

You can imagine our shock when he received the call. It was October 23, 2023—the day the carpet was pulled out beneath our feet. He was diagnosed with invasive squamous cell carcinoma. How could this be? Gene doesn’t smoke or drink, and he works out every day!

When you are in a situation like this, you feel that time is of the essence—and it is.

I immediately began searching for specialists and making appointments. I had booked visits with three separate specialists for the following week. When you are in a situation like this, you feel that time is of the essence—and it is. 

The next thing you do is try to learn as much as possible about the disease and the treatment. This is absolutely necessary, as you want to ask them as many questions as possible. There is a lot of good information if you go to reliable sources. Over the years, we have been blessed with good health in our family. So, this diagnosis came out of the blue, and preparing for it was quite the challenge. 

I would suggest to anyone in this same position to immediately schedule various consults and appointments and follow-up with everyone. Make sure to send and receive the slides, or that the PET scan disc is ready for pickup. While in shock and trying to accept your diagnosis, it is important to take a breath and take control wherever you can. Remember that you can ask questions, take notes, and ask more questions until you feel confident in your treatment strategy.

Gene’s surgeon was compassionate and took the time to explain everything. We appreciated that he was conservative in his approach and didn’t do anything radical unless it was deemed necessary. After he explained everything, I distinctly remember both Gene and I took a deep breath and at the same time let out a sigh of relief. Despite knowing this was who needed to perform the surgery we still wanted to meet with the other specialists. As we learned more information, we requested another consult as we had more questions.

Food is medicine. I truly believe it aided in Gene’s healing process.

That weekend all of our children visited, and we discussed everything—the surgery, the three different doctors we met, and their approaches. It was a special time—nothing but love and support. By the end of the weekend, we felt confident in our decision and believed we could maintain a positive attitude which we would need going forward. We feel extremely blessed to have such loving, caring and supportive children.

The surgery was mid-November, and Gene had to stay over. I stayed overnight with him—I am grateful that I was there because he really needed a lot of help during the night. And having me there made it more comfortable for him. Gene had a partial glossectomy, and due to the size of the tumor, he also had a radical neck dissection. 

Even though all the lymph nodes tested negative for disease, radiation was still recommended because of the type of cancer. Over the next 6 weeks, Gene would undergo 30 sessions of radiation. Since he needed so much treatment, I knew I had to nourish him as best as possible. 

Aiding his recovery and preparing him for radiation was my goal. However, he was unable to chew after surgery. I worked with the nutritionist to understand how much protein and how many calories he needed and used that as my guide. So, I decided to make my own nutrition shakes and pureed complete meals to help Gene heal as he recovered from surgery.

Staying positive and persevering can be difficult during these times.

He started radiation the day after Christmas. The first couple of weeks weren’t bad. The side effects increased with time and were the worst after the last session of radiation, as the effects accumulated. Gene is a trooper. He ate everything I gave him and stayed hydrated. Gene did the exercises that the speech pathologist recommended. He rinsed every hour to keep his mouth moist and properly hydrated. Every morning, he also exercised by going on a two-mile walk and continued working from home. 

I found it necessary to set alarms on my phone to not miss the rinsing, exercising and meds. It seemed like my phone was chiming all day long! But the perseverance to do these things and maintain a positive attitude was paramount to getting through.

As the weeks progressed, it became more challenging—it was the most challenging of times , for the both of us. Gene took 2 weeks off from workHe began to struggle more with eating. He was unable to taste anything, however certain foods would cause burning. The symptoms were ever-changing.

I turned to the nutritionist and my own research to keep adapting his food. I researched everything I could about the nutritional content of different foods. For instance, I researched which foods could boost the immune system, and which were antioxidants. I did everything I could to try and provide the best nourishment. Though challenging, it was evident how much this approach aided his recovery and allowed Gene to push through. His weight only dropped 10 lbs. throughout the process. I’m a big believer in the importance of nutrition—food is medicine. I truly believe it aided in Gene’s healing process.

Being a caregiver is a full-time job and emotionally it takes its toll.

As I recall this journey, it has been challenging. It is still part of our lives and yet it seems like it was so long ago. Gene still deals with the effects of radiation and surgery. While the sores are all gone, his sense of taste is slowly returning and he chews all of his meals now. He will live with some side effects from both the surgery and the radiation for the rest of his life. Despite this, he is very disciplined and will continue to work at healing. And I will continue to provide support and nourishment. Staying positive and persevering can be difficult during these times. As time passes and the healing continues, it becomes easier.

When cancer strikes, there is an initial state of shock. You will have to confront your feelings and address your emotional and physical needs in order to get through treatment. I needed to put my emotions on hold so I could take care of the tasks that needed to be done to help Gene with treatment. This involved scheduling and following up on labs, procedures, and reports; buying humidifiers, lotions, dental care products, and prescriptions; providing nourishment, driving to and from treatments, providing emotional support. Honestly, the list goes on. 

I cannot imagine anyone going through something like this without support. Being a caregiver is a full-time job and emotionally it takes its toll. However, when the patient shows signs of progress, it’s a blessing to know that you were able to help. I never felt helpless. And I think that stems from my decision to take control wherever and whenever possible. 

I believe in God and know that He pointed us in the right direction every step of the way. My days start with prayer thanking God for another day. I ask for the guidance and strength to get through the day and to do what I can to assist my husband in the recovery of his health. God has answered my prayers.