Apr 23, 2010 - 5:28 pm
Been a while since I've posted. As you may recall, I started an eight-week treatment regime on March 15 for Base of Tongue SCC, with mets to lymph nodes on both sides.
So far, I've done five of my eight weeks of radiation and two of my three cisplatin chemo treatments. On Monday, they temporarily stopped my radiation treatments owing to severe skin burns to my neck. From my earlobes to my collarbone I was as red as a brick and peeling, and they said if I didn't take a break, I would shortly have third degree burns. So, I've been sitting at home with my feet up, slathering on the Biofine emulsion, and praying that they will let me begin again next Monday. I don't want to lose any more time.
I started treatment without the PEG, at my oncologist's recommendation. Ha! Based on what I've read here, I should have argued for it at the start. I had the PEG installed after week 4 of my treatment. I dropped a fast 15 pounds during the first four weeks, and now my weight has stabilized and is going back up. I'm using the pump to slow feed overnight, and do two more feedings during the day and it has been a real life saver. I am still able to swallow, it just became too much to choke down enough of the thick shakes with the mucositis.
Hair has thinned, and I have the radiation racing stripes of hairloss up the back of my neck. I may yet lose more, I can't tell.
I have followed up on every recommendation here with regard to medications, mouth rinses, lotions and supplements and my doctors have been willing to write prescriptions for them all. I have more medications than I can use on a daily basis, but they are there if I need them. I'm not suffering severe discomfort. I'm getting enough sleep (hey, I was a light sleeper anyway). Perhaps this short break will make me stronger and more able to face the last 13 radiation treatments and the last cisplatin.
I am anxious, but determined to get through this. Sometimes I feel like I am walking a very steep and narrow path, with a very heavy weight on my back. I am afraid to look away from my own feet for fear I will fall off the path. So, forgive me if I have been out of touch. I've just been afraid to look up and say "Hi."
Before I started this journey, my daughter brought me a collection of really high quality loose teas, both green and red, and tea bags. I've been drinking the tea daily, weakly brewed and cooled, or diluted over ice. I'm convinced that the anti-oxidants and other good things in the tea, and the regular swallowing, are the reasons my throat is doing as well as it is. And, it does help to thin the mucous. So, that is my advice, to add to all the other good advice available on this board.
Thank you all for your support and advice on this journey. I could not have done this without all of you.