Week 95?

Hello,

Again, sorry for the sporadic posts but it's been a very difficult few months. After continued testing and multiple doctors visits, scans, etc. my latest issues that put me in the hospital around the middle of August were swallowing problems. I was not able to eat or drink because the muscles that control my swallowing in my throat were forcing food and drink back up my nose when I tried to swallow instead of down into my stomach. The same day this started I had numbness/weakness in my left arm and finally agreed to go to the emergency room. I was in the hospital for 8 days while they pumped me full of steroids, pain meds because of the pains in my left side of my neck and shoulder that has been another on going issue over the past two months and my oncologist again tried to contact Neurosurgeons or any other doctors who could help him determine how to help me. After meeting with a Board of Neurosurgeons in Peoria in addition to the Neurosurgeon from Northwestern my doctor was advised that surgery to remove the tumor in my skull that they believed was the primary cause for many of my problems was simply too risky and not an option for me at all. Too many nerves in the location, too much liability for anyone to take a chance. My doctor then consulted with Doctors from Central DuPage Hospital who have a Proton Radiation facility in Warrenville and thought this might be something that can help pin point the tumor and shrink it. I was released from the Rockford hospital (OSF St. Anthony) on a Thursday, went to CDH the next day, Friday and had one round of regular radiation to a couple small spots of cancer on the back of my spine. I had the same type of radiation in early February 2011 and for no-known reason I had an allergic reaction immediately following this radiation and was then rushed to the emergency room at CDH where I stayed for about 5 hours until I was taken by ambulance back to Rockford and admitted for another 2 or 3 days until they were sure I was stable again. Since then I have been at home and in bed pretty much round the clock. Initially I had to have IV fluids hooked up each night so I didn't dehydrate and didn't end up back in the hospital. Chris moved out here as soon as I went in the hospital and if it weren't for him I would still be in the hospital today because I am unable to take care of myself due to all the constant pain, medication requirements, etc. They also put me on the pill form of Chemo in efforts to shrink the tumor, however, that caused such bad blistering in my mouth and tongue I had to stop after 11 days and struggle terribly everytime I try to eat because everything burns. The swallowing is better now but the blisters make it impossible to eat anything other than pudding, cottage cheese, frozen yogurt etc. because of the acids in most food. Have to stick to very plain, cold things. I can't wait to be able to eat again. :(

As of today I am scheduled to begin the Proton Radiation this Wednesday and will go everyday for at least two weeks but they said they will let me know more next week when we begin. Since they have no idea why I had a reaction to the regular radiation a few weeks ago everyone is a little nervous what will happen with the Proton therapy but hopefully my body is strong enough to handle it. Again the hope is this Proton radiation will shrink the tumor and alleviate the pinching and/or damage to my nerves so that I will be able to swallow, talk and eat again. I am also not able to move my neck due to the pain and that too is suppose to improve but of course no one has any idea that it will. Everything at this point is just a hope no guarantee.

The kids are back to school and doing ok so far. Of course this has been very hard for them and we are taking everything one day at a time and hope it won't be too much longer before we can see some great improvements.

Sorry the tone of this blog isn't very positive and please know I have not lost my positive focus just a very tough time and too many medications right now to be in my right frame of mind. Not being able to take care of myself, work and stress over bills and constant pain is just not a fun place to be right now. :( I know I'll get thru this just as in the past and as always am thankful to all of you who remind me daily I'm in your thoughts and prayers. I will update again as soon as I can. Love to all!!!!