Dec 11, 2012 - 5:33 pm
I want to thank all you head and neck people for becoming part of my family. This has been a very hard and dark place for me the past few months. Today I was doing some figuring and it has been 139 days since my husband has kissed me and 83 since our last hug. It is so hard seeing my best friend so sick and trying to maintain hope, when everything suggests that without a miracle he will die. It is even harder not having any physical contact from him to comfort me during this time. I am not a very touchy/feely person so people know to stay their distance from me when it comes to this. Well right now I need a hug, a shoulder to cry on. It is hard I feel all alone here. One thing that keeps me going and gives me a little recharge is the wonderful people on this site. David has lots of people rooting for him and caring for him, but I feel like you guys are my cheering section. Of course you want David to live because you care about me and you know I absolutely adore him. You make me laugh when no one else can and you reach down and touch my soul at times and let me have that cathartic cry I so desperately need sometimes. Rick I want to say I really appreciate you. Even though you are going through your personal battle with Arlene by your side, you take time to lift me up. Thank you. Everyone else and there are so many of you that are so important to me thank you. I came here thinking David and I would be finishing chemo and radiation and start the healing process from the BOT cancer. I never in a million years thought I would be going through this. I feel so alienated from everyone. You know there isn't a support group for PPCL. When I go to leukemia sites they don't know what to do with me. Some people tell us to hold on and try to make it until they find a cure. Don't get me wrong, I want a cure, the thing is why would they be trying to cure something that 1:100,000,000 have when there are so many people with other cancers that can benefit from cures. It is so much easier to have clinical trials when you can have large control groups. Honestly our doctors are trying their best, but they even admit they don't know much about this. Our doctor said that one person responded well to this therapy and they lived for months. I say months do not make me feel better. We are talking of months of chemo, BMT, not going out in crowds because of low immune systems. Without a miracle what quality of life will my husband have. They aren't even going to let him go home. When he gets well enough to leave the Markey Center they will transfer him to Cardinal Hill Hospital for long term care. OK so I have digressed I am sorry. See you are family. I can be disfunctional and you guys still love me. I pray a special blessing for each and everyone of you this holiday season. May you have a season that is feeled with happiness and love.