Our Cancer Stories are so similar, mine and Garys!
by Valerie
My story is not a Skin cancer story; it is a Tonsil cancer story. I was diagnosed in November of 09 with Squamous Cell Tonsil cancer, stage 4. I had a 17-hour surgery in February of 2010. My surgery was very extensive and radical and there were complications as the flap failed and twisted so they had to go back in and fix it. I was in the burn unit ICU for over 5 days as my lung collapsed. This is what my sugary consisted of: Transmandibular Transoral Excision of Oropharyngeal Cancer Bilateral Neck Dissection Left Submandibular Gland Transfer Left Radial Forearm Free Flap STSG ( Split Thickness skin graft) from left thigh to left forearm Tracheostomy The surgery was followed by 30 radiations and 3 chemos for enhancing the radiation. Radiation was the worst thing I ever had personally been through. I really thought I was going to die. I had radiation on both my left and right side of my throat and neck as I had lymph nodes that were affected on both sides. I had had a PEG tube installed previous to the radiation and within two weeks in I could not swallow a thing! I am very thankful for having the Peg tube. I though, like everyone else who needs it for cancer could not wait to get rid of it. The following August I started with a group therapy class to start eating and get rid of the tube. Soon everyone was passing me by, they were eating way more then me and got rid of their tubes within about 4 to 6 months. I decided then that I needed a one on one therapist. I started going to this therapist in November and was told that if anyone could get me eating again she could. By Christmas I was eating soups, yoghurts, puddings and mashed potatoes with lots of gravy. I was taking in about 1000 calories by mouth, and it was feeling good. Later on though she decided I was ready for solids even though the video x-rays said different. I kept telling her it was not working and I still was not eating what my 3-year-old grand daughter ate. She kept saying I was doing fine. My video x-rays showed all along that I was aspirating silently. The techs there were quite worried about me getting pneumonia, due to the aspirating. My therapist ignored what they were saying and was sure it was that I just needed to strengthen the muscles in my throat. I ended up with Aspirational Pneumonia at the first of May this year! I was then taken off all food by mouth and told to stay off until I have all the tests done at the first part of July. So now I am back at square one and very frustrated. They will be starting with an other video x-ray followed by a battery of tests. My therapist wants me to practice dry swallowing without wetting the inside of my mouth to strengthen the muscles in my throat. I have talked to many “normal” people and asked if they can do this and they have all said it is impossible to do when their mouths are dry. I will practice and hope I can do it and strengthen my muscles. I am hoping that they do a “esophagus stretch” as I know it shrunk with the radiation I had and feel that it would be the solution or part of the solution to my problems. I am hoping that there is a solution and that I will be able to eat by mouth again. But if it comes to protecting my lungs from pneumonia I will do whatever it takes to keep healthy. If it comes down to being on the tube for life I will deal with that. I won’t give up until I have all the results. I beat cancer and will not let my lungs be destroyed by my aspirating problems, and I will try everything until I run out of options! My doctor has put me on Previcid for acid reflux because if I happen to aspirate the stomach acid it could be deadly. Also they have given me an infant nasal mist for sinus problems that are connected to my condition. He says the normal spray is too easy to be swallowed and aspirated which also would be dangerous for me. Thank you Gary for emailing me back and inviting me to tell my story here. I was so glad to find someone who shares a similar story to mine. I don’t feel quite as alone. Sunshine and Smiles Val
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