My husband was diagnosed with stage 3 squamous cell carcinoma at the base of his tongue in March. On May 7, doctors at University of Pennsylvania performed a near total glossectomy with a total neck dissection removing all the lymph nodes in his neck, part of the pharynx and one tonsil. Thankfully, his lymph nodes were all clear but there is perineural invasion and what the docs called a focal point on the roof of his mouth. Bob was in the hospital for 10 days and then came home with a trach - that is some scary stuff! But it's amazing what you learn to deal with when you have to. Six weeks after surgery, he started six weeks of radiation and had chemo once a week (cisplatin). The last two weeks of radiation were so difficult for him and he did end up in the hospital once with a neutropenic fever but thankfully he made it through. I am still amazed at how long the radiation side effects last. Bob compared it to putting a piece of meat in the microwave and how they always tell you to let it stand for 2 minutes when it's done cooking. His oncologist laughed out loud at the analogy. He can make jokes about it once in a while but I know that inside he's still hurting and scared. He has lymphadema in his neck which makes sleeping difficult which makes him cranky. He's started therapy for that but it's slow going and sometimes I can almost hear his frustration. But I think the thing he's really having a hard time with is eating. He's not been allowed anything by mouth since the surgery until last week when he was given the okay for sipping clear liquids. Almost five months without eating. I would have lost my mind four months ago! He's been seeing a wonderful speech therapist and has definitely made progress but I worry that he won't make enough progress and the PEG will become permanent. I know that was not anything he ever thought was possible and he misses eating along with the social side of things. Our lives have changed so much but I am so thankful he is still here. We have three children who are all grown and independent and I thought now would be when we could really start having fun. I know a lot of people have to deal with these issues and much worse but sometimes, like tonight, I feel a little sorry for myself. I'm sure tomorrow will be a better day.
