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Patty A – Journal Part 2

Preparation and the beginning of treatment

The rest of September was filled with appointments to discuss treatment and visits to the dentist to prepare for eventual radiation treatments. Oral cancer radiation treatments as well as chemo damage healthy cells in the mouth. Radiation slows saliva production and can damage teeth. Dentists like to remove any bad teeth before you start treatment. It’s best to get your teeth checked out before treatment.

In October, the chemo port and peg were inserted. Tom was fitted for a radiation mask. Chemo and radiation began that month.

Throughout the process, the Sparrow dietitian Wendy LaFontaine was a great help to us. Wendy emphasized the importance of good nutrition and staying hydrated. It became more difficult for Tom to eat as his mouth and tongue were affected by the radiation. “Dry mouth” is a symptom of radiation but this phrase is an understatement. The radiation caused a thick mucus build-up in the mouth that needed to be suctioned out. Oftentimes, the mucus was bloody. Tom had difficulty even swallowing water. As a result, he became dehydrated. At an early November appointment, the radiation oncologist told us he was “afraid.” He told Tom, “You meet the criteria of malnutrition.” He scheduled several infusions for him for hydration and from this point forward, we spent many hours at the infusion center battling dehydration. Shortly after that, Tom started tube feedings. Even after the tube feedings, dehydration remained a problem. (to be continued)

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Upcoming Lugnuts game

We are thinking of going to a Lugnuts game sometime in July. I am just trying to get an idea if there is an interest. THERE IS NO OBLIGATION AT THIS TIME. Just let me know if you like the idea. I understand that it may depend on the dates and times chosen but at this point in the process, I just want to know if there is an interest.  I expect it to be open to all your friends and family.

TomA@TenaciousWarriors.com

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Patty A – Journal Part 1

The diagnosis

Our journey with head and neck cancer began in July 2016. Our daughter and 2-year-old grandson were visiting us. My husband, Tom, was away on a business trip. He called me from Atlanta to tell me that he thought he had the mumps. He could not move his neck and there was a large lump on the left side. I dismissed the mumps idea. I had no idea what the problem was but I didn’t think it was the mumps. I talked to my daughter and she felt nervous about her dad coming home with a possible infection that her son might catch. Before stopping home, Tom stopped off at our family physician in town. Thinking it might be an infection, the doctor prescribed antibiotics. Tom came home but kept a safe distance from the family.

Throughout July, Tom had an ultrasound done and a blood test. Not finding the problem, the family doctor referred him to an ear-nose-throat specialist (ENT).

At first, I was leery of the ENT specialist. His website and literature in his waiting room showed an emphasis on cosmetic plastic surgery. I was suspicious that he would not be the best doctor for the situation. I could not have been more wrong. In August, he examined Tom and did a localized biopsy in the office. When the results were negative for cancer, the doctor “didn’t like the results” and scheduled a guided biopsy. In September, two months after the initial lump appeared, Tom was diagnosed with squamous cell carcinoma. Even after a PET scan, the exact location of the cancer was not known till a September 27 triple endoscopy revealed the location as base of tongue. We learned later that base of tongue cancers often are not detected until Stage 4 because they don’t show up until they travel to another part of the body. In Tom’s case, it traveled from the tongue to the neck in the lymph nodes.

If not for the specialist’s persistence and hesitancy to accept the original findings of the test results, Tom’s cancer would have continued unchecked.

Soon after, Tom began preparation for cancer treatment. (to be continued)

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Beth D – Journal Part 1

My husband Mariano is a Tenacious Warrior!

 We had no idea from the very beginning the magnitude of what we were about to embark upon in the many months following his diagnosis.  The purpose of sharing our story is to help others diagnosed with a form of head and neck cancer prepare for their Warrior journey.   We wish to provide support before, during and after treatment. 

Mariano was diagnosed in the fall of 2017 with Stage 3 Nasopharyngeal Cancer.  His tumor was located at the very back of his nasal cavity and top of his throat.  His treatment would consist of 33 radiation treatments and 7 Chemotherapy treatments over the course of 7 weeks (Dec 2017 – Jan 2018).  He had an additional round of Chemo in March 2018 as well.    

We had an excellent care team.  Mariano’s Oncologist, Radiation Oncologist and ENT physician were amazing as well as their respective nurses, technicians and therapists.  During treatment Mariano had 3 short stays in the hospital.  Two related to his feeding tube and one for fevers to rule out sepsis.  What I found to be a challenge was figuring out how to manage the side effects at home.  He battled; nausea, vomiting, constipation, diarrhea, mouth sores, mucus and pain.  There were several times along our journey that I felt it would have been helpful to talk to someone who had already fought this battle.  I could have used ideas as to how others handled care at home.  Someone to troubleshoot strategies with, not to mention reduce stress in an already exhaustive endeavor.  What worked best for nausea?  When did they have the feeding tube placed?  How often did they use a laxative/stool softener to prevent constipation from the narcotic pain reliever? That’s just a snippet of obstacles we overcame. This is why we feel passionate about reaching out to others with head/neck cancer.  We want to let them know that they are not alone in this battle. 

Mariano is doing well today and is back to work.  He has had 2 clean PET scans and continues to be in the monitoring state of scans every 6 months for a few years.  We attribute our success with battling this cancer to our faith in God, positive thinking and our amazing care team and family.  If anyone would like to talk about our experiences in caring for head and neck cancer at home in greater detail, please do not hesitate to contact me through this website email (bethd@tenaciouswarriors.com). 

Best wishes and Godspeed on your healing journey.

Beth D.