Sunday, January 15, 2012


All over FaceBook lately is talk about a Barbie to recognize childhood cancer hair loss. I personally think it's a great idea however, I also have some personal thoughts that should be looked at. In the year 1985 at the age of 15, I was that child diagnosed with Hodgkin's Disease, a childhood cancer. I did not lose all of my hair, but I did lose some hair due to the radiation. In fact I was diagnosed with Hodgkin's when NON Hodgkin's wasn't even a name of a disease yet. The radiation I rec'd to my body during that time saved my life. BUT - The lung cancer that is inoperable and has spread through out my body now for the past 19 months is there because of that radiation. Throughout the years I have been a part of the ACS Relay for Life raising money for cancer research and speaking at different public events. At times I became complacent in my life and even forgot from time to time that cancer could return. Well It did return and with a vengeance. I never thought that when I was diagnosed that so many people I consider friends and sisters would also be diagnosed. All of us becoming BALD and dealing with our own insecurities. One thing we first nnoticed was that those who were dealing with Breast Cancer were so lucky. The research and strides made to win against Breast Cancer have been tremendous over the years. Thanks to powerful women and the Susan G Koman Foundation, Breast Cancer is beatable! Avon's upcoming Houston Walk is another example of major fundraising for breast cancer.

Childhood cancers also need that kind of support and I think it will need major celebrity backing. Disney/Mattell need to do it and make it really big. They have the money and power. I think it should be more than childhood cancers though. The Barbie should be dressed in jeans with a t-shirt. On the Tshirt is the cancer ribbon the color of the cancer you are supporting research on - binged out of course and the Barbie must come with a wig. Wigs are fun and little girls do play dress up with them. I wear mine all the time! So there you go......The back cover of the box could be the chart showing the ribbon colors for each cancer. All we ever hear about is PINK for Breast Cancer. Even the NFL celebrates it. Well Lung Cancer month is November....didn't know that did ya?  I hope something happens, any awareness is a blessing, just thought I would share my feelings and maybe something will happen.....we will see.....Ellen

Thursday, January 12, 2012

Satisfaction and Dr Settle's radiation

I am currently in Houston to receive radiation to my spine on the T10 and L4. This is the last of the radiation that my spine can handle and it has to be delivered so precise. These 10 treatments over the course of 15 days is not meant to make me walk (that would be a miracle). The radiation is being done to stop the pain (the pain was around a 6 when I started radiation in Jan 3. , with daily pain meds I can get it to about a comfy 2. ) It was also being done to try and delay (prolong)any permanant leg paralysis. When I arrived I had: 1. NO feeling in either leg 2. The numbness in my legs, feet, buttucks etc. was painful and I was in pain no matter how I sat, laid, twisted or turned. 3. I began to lose my upper body stregnth which is detremental to everything. 4. I could no longer stand cause I could not feeel the bottoms of my feet at all. 5. I couldn't be moved from wheelchair to bed, vice versa, to shower, to car or anywhere without Wayne lifting me. I am dead weight literally from the waist down. I use to be able to do lots of leg excercises and they just stopped. My legs just stopped moving and thats a terrible feeling. Well this morning before my 6th treatment I was able to see Dr Settle. He is my gentle giant. When he came in the room he asked if I felt like there was any improvement in my legs. Being the drama queen I am, (Acadamy Award's to my right plz) I threw back my blanket from my lap and began to rock my knees back and forth together. Dr Settle literally JUMPED BACK and said "WOW! I can't believe this, its incredible to see that kind of improvement in only-6 treatments!" He is so satisfied. Like he said - I may not WALK again but with the movement and feeling coming back to my left leg (yesI feel the bottom of my foot and that helps me steady my weight for wayne when he lifts me)  it will help me with a better quality if life and delay the paralysis some and as for the pain - its under control as well. If God wants me to walk again I will. If its not part of the plan we move along to what is. What else can I say. HeckI felt so good today that after radiation Wayne and I drove around looking for some good food and a Barnes and Nobles just to kick back at for a while. It felt good to be out and actually laugh a little. Of course this road is very long and very winding, but when you forget the bad stuff and enjoy the golden moments that are so satisfying the day becomes so bright and warm. I really enjoyed it. Now tomorrow is treatment 8 and its at 6:45 am and its gonna be 29 degrees without the wind chill factor. So I guess we will be coming straight back to the apt after, brrrrrr. We get a break over the holiday weekend and then Tues and Wed am we do last  ones and head home. I will do follow up MRI's to back in 4-6 weeks but will do a brain MRI at end of January in Slidell just to make sure there are no issues there. 

Just a side note: I have been reading the book by Joel Osteen - Everyday a Friday. I know its written by a preacher but its more than that. Every chapter feels like it was writen for me in my lifes order and as I read it daily I get a new message and its right there in my face, no denying any of it. On top of it I received several texts today about dreams people are having and some sent me some Bible verses via text that actually would be perfect captions for the dream and even for some of what I am reading. They say that God works in mysterious ways - no he doesnt. He stands right there and does what he has to until you open your eyes, your mind and heart to him and when you finally "get it" its like fireworks going off and you love every minute of it. I hate to say it Wayne, today I actually felt light as you picked me up and moved me around all day instead of the heaviness I have felt in the past. To me this is a sign that I am getting beter baby. I hope you all keep enjoying my blog. I promise to keep it up. Also, check out Eric Haas' blog here as well. he is the son of a friend's, friend in Canada. On google ericsfight (I think). You can find info and links on my facebook too. As always, God Bless everyone for my payers and love. I thank Father Seelos, Saint Pio, Sr Dulce (still recovering from surgery MOM - forgot to tell you - infection it sounds like but getting better) and of course our Lord Jesus- I am so blessed.  I will find a pic of Dr Settle when I get home......Ellen