Thursday, August 28, 2008

Hi Everyone,

Just wanted to send love and prayers to all our friends in New Orleans. We are watching the tropical updates, and well to put it lightly it freaks us out. There are so many people there that we love. Please everyone send love to all our loved ones in New Orleans and along the Gulf Coast.

Just wanted to acknowledge how much the post Cathy made means to me. Having her and this relationship really helps right now. I pray for the ease and love we have to continue through whatever we have to face.


Thursday, August 28, 2008

Hello to all.
Cathy here.
This is my favorite all time story about Ellen. We met over seven years ago at Jazzfest in New Orleans. She walked into my art booth on the first day of the show and was attracted to a painting I had done of a woman who had birds balanced on her arms. The painting was named "Grace" and since I was fond of the painting myself, I had a big price tag on it. She and I talked for a few minutes about the painting and, although she was interested, she told me she would wait until Sunday and if I still had the painting maybe she could get a good deal on the price. As she said this, she looked at me out of the corner of her eye with a huge smile on her face. I was immediately smitten. Permanently smitten. When she left I removed the painting from the wall and hid it in the back of my booth. And waited for Sunday. She came back, of course, and was delighted with her extraordinarily large discount on the price..........
We didn't get together for another year, but eventually, "Grace" came back into my life. She hangs in our home as a sweet reminder of how Ellen and I found each other.
Ellen and I went to the beach last Saturday, looking for the sun after five days of rain. We sat on lounge chairs under a big umbrella and watched the waves crashing on the beach for a long time. Despite everything else going on in her life, when I looked over at her she had the most beautiful, peaceful and serene smile on her face. She was loving every minute of being there. Grace is like that. Sometimes, we're lucky enough to witness it.
And I'm still permanently smitten.

Monday, August 25, 2008

Monday, August 25,2008

Wow, I guess the routiness of my days are starting to set in! I keep thinking I want to get a volunteer job, or something to keep me occupied while Cathy works and I putz around or sleep. My appointment today went fine. It's over before you know what's happened. As the day goes on I start to feel a little tired--I've been warned about that. The most uncomfortable thing is the incision spot in one area. I was told that nerve endings are cut through, and that is part of the reason for the stinging and pain. I have 27 more radiation treatments. Unbelievable? Have I mentioned that patience is not one of my virtures. From what I have written I'm assuming you may have guessed the above mentioned.

Life changes so quickly. Since I have been with Cathy I've tried to live one day at a time, but getting devastating news always seems to change my reaction to the moment. Any suggestions about volunteer work would be greatly appreciated.
Love to Everyone,

Thursday, August 21, 2008

First day of radiation/chemo

On Thursday, August 21,2008, I had my first radiation and oral chemo treatment. All went well! Aside from being a little anxious, O.K., petrified, I held my own. I keep waiting for someone to tell me there has been a mistake, and I really don't have a brain tumor. Guess I'm just in the first stage, huh? I keep thinking about everyone who has written in. Some I know, some I know through Cathy, or Donna, or whoever. Everyone has been such a great support. This is so foreign from anything that happens in a "normal" life. Boy, that sounds like B.S., but sorry I can't think of any other way to express it.

If anyone is interested in the actual treatment, here's what I can muster. You go into the treatment room. The techs place a soft mask on your face, which was molded from a soft plastic--sort of like fishing plastic, but thicker. They did some markings on the mask--made sure it was correct--then did the actual treatment. I was laying on a hard table with a pillow under my knees. A large round radiation device hovered above my head in three places. It took maybe 4 minutes. I felt O.K. afterwards. It was all very surreal. Again, is this really happening. Part of me cannot comprehend.

I'm just living one day at a time, and so far it hasn't been too bad. Please pray for me and for this persistent rain to stop.

Love to All,

Sunday, August 17, 2008

August 17, 2008

It has been a couple of days since my last post. Thanks to everyone who has been checking the site, and adding their comments. It is very uplifting to read what you are thinking, and then writing. I know I am only at the beginning of this brain tumor ordeal, but somehow kind words from the heart help so much. Emotionally, I know I have not even skimmed the surface of what I'm feeling. I want to know everything, but then somehow think if I'm awake at 3am, it will somehow prevent me from ever sleeping again. Just taking it one day at a time.

We went to the beach Friday and yesterday. We drove from here to Clearwater. It was beautiful, calming, and very relaxing. Highly recommended for anyone who needs great R & R. I'm doing some of what I have always wanted to do. Victoria, you are so right about love leading the way.

Love to all,

P.S. Tuesday is my first radiation/chemo treatment.

Thursday, August 14, 2008

August 15, 2008

Today is August 15, 2008. Thanks so much for staying in touch via this amazing site, compliments on Donna M. It's been one month since my brain surgery. Interesting experience, but try to avoid if at all possible! I feel better with each new day. At first it was difficult to distinguish the small gains I made on a daily basis, but now I'm on a different medication to prevent seizures, and noticable changes are happening daily. You guys are the best support system ever. Just knowing so many people are interested, care , and love me makes every day worthwhile! Support, support, support! Can't imagine doing this without you.

On Tuesday I met with the radiation/oncologist. Dr. Sombeck was amazingly kind and considerate. He wanted to answer any question we had for him. At this point I want answers, but have limitations on how much I want to know. I actually got to see the MRI of my brain--before and after surgery. (It was quite awesome to see the details!) So anyway, I'm gathering information at a rate I can handle. Lots I do know already, because of my training. Information is power, so before long I know I'll be deeply embedded in lots of tumor information.

Thanks again for all your love and support. I'll continue to send more updates. And thanks too, for loving and supporting Cathy.

Lots of love,

Monday, August 11, 2008

Visiting Lafayette and New Orleans

Photo from left: Cathy, Ellen, Nancy, Marie & Liz.
Ellen and Cathy spent the weekend traveling to Lafayette, Louisiana to spend time with Ellen's family and then to New Orleans to visit friends. Dinner at Nancy and Greg's house was a great time with good friends Nancy, Greg, Marie, Liz, Susan, Sam and Nori. Nancy said Ellen looked great and they all laughed so hard their cheeks hurt. But then, that's what friends are for!

Thursday, August 7, 2008

Treatment Information

On Monday, August 4th, Ellen met with her oncologist to map out her treatment for the glioblastoma multiforme tumor she had surgically removed on July 15, 2008 . She will receive a round of radiation therapy along with chemotherapy for a period of six weeks. Ellen is a patient of Dr. Nicholas Avgeropoulos at the MD Anderson Cancer Center in Orlando, Florida. Following the first round of treatment, she will receive another MRI and they will evaluate the next step.   (God Speed Ellen...we are all rooting for you.)

Note: Shortly, Ellen will begin her diary and I, on occasion, will add updates to this blog about Ellen's treatment so that all her friends and extended family can get information quickly. Please feel free to pass this on to others who know and love Ellen and would like to be kept up to date. Thanks, Donna Musarra