Christmas

Happy Holidays to all! Wow, what a season of joy, tears, and wonderment! A special thanks to my friends who organized the barrage of holiday cards, gifts, and ornaments. Our Christmas tree is simply gorgeous, and so uniquely decorated. It seems impossible to thank each person individually, but you are all in our hearts and prayers. I have never been so touched by the display of love and giving from everyone. Cathy and I are truly blessed to have been given so much. I extend my love and gratitude to all of you. May your holiday season continue in the same way you have touched our lives.

An update on my condition--I have had two chemo treatments so far. On Monday, I have a third treatment, and then will have another CAT scan of the brain. The chemo treatments are tough, and make me ill for three to four days. However, right now it is all worth having this time with my girlfriend, friends, and family.

Love and gratitude to all of you,
Ellen

An Ellen Update

Hello
Cathy here. Just want to update you all on Ellen.
To begin, we had a visit from our good and fabulous friend Donna the weekend before Thanksgiving. We shared a lot of laughs and tears, in the usual good way that close friends do. We both felt a lot of positive energy from the visit, even though I did have a bit of a hangover one morning.
We flew to Lafayette the Sunday before Thanksgiving so Ellen could spend some time with her family before beginning chemo treatment. It was a wonderful visit. She shared time with each of her siblings and cried and laughed in the usual good way that family does. We returned home on Thanksgiving day to what we thought would be a quiet and turkeyless evening and discovered our friend Deb had prepared an entire Thanksgiving dinner for us. We were surprised and very touched by her efforts. So we cried and laughed in the way that good friends do and ate turkey with dressing. Our Thanksgiving prayer gave thanks to all of our friends and family for the support and love they share with us and for the blessing of God in our lives each day.
Ellen did have her first chemo treatment on Friday and did not have any severe reactions. She's had a rough weekend of fatigue and nausea, but today, Monday, she is feeling somewhat better. She has an appointment for a port infusion placement this week and another chemo round on the 15th of December.
When we are lying in bed at night, since the chemo, I believe I can hear the cancer cells screaming for their lives. Die you little bastards, die!
Keep thinking good thoughts and thanks so much for all your love and support. It has meant so much to both of us
love,
cathy

More News

Ellen and Cathy received some sobering news on Wednesday. Ellen's follow-up MRI has shown that the tumor has continued to grow in the area that had been previously radiated. She is still planning on starting an IV chemotherapy treatment next week to help with tumor symptoms and to continue to fight this thing. The first treatment will be set up to see if her body can tolerate the chemo cocktail that her doctor is suggesting. Ellen is really hanging in there, but needs our love now more than ever.

Donna 

Good Morning! Just wanted to touch base with all of you after yesterday's second opinion in Jacksonville. The doctor was extremely nice, and after hearing bad news for so many weeks, we finally got a glimmer of hope. After looking at my MRI's Dr. Jaeckle said that he was not so sure that the radiation has not worked. He said that the radiation dye can look like new tumor growth on the image, because the dye can actually leak out and appear like a tumor on the MRI. The bad news is that there were new spots of tumor growth on areas not treated. The bottom line is we need to keep plugging away at this nasty tumor. Today I have another follow-up MRI, and then I finally make a decision about continuing treatment.

Thanks to all of you for your prayers, hopes, and never ending belief that anything is possible.

Love,
Ellen

MRI update

Sorry for not posting Monday or yesterday, but the bad news continues, and I am just doing my best right now. I saw Dr. Nick on Monday morning. The brain tumor has advanced. He said it happens to maybe one in four patients who undergo the radiation/oral chemo. Somehow, don't ask me how, I just knew the news was not going to be good. Basically, Dr. Nick said I have three options: 1) Pursue clinical studies 2) Undergo an IV chemo treatment 3) Let the disease take it's course. Of course, he also suggested I get another opinion, which we are pursuing at this time. I already have an appointment with a doctor in Jacksonville on election day. So, the process moves on.

Thanks to all of you for your unending words of love and support. I have received gifts and notes from countless people. I cherish all of them. Somehow without you holding me in your arms this would be much harder.

All my love,
Ellen

Yes, it has been way too long since I posted. My dear friend, Donna, has finally accomplished the task of getting me to write to you. Since my radiation ended two weeks ago, physically and mentally it has been hard to function. Of course, I always think if I cannot write something positive, then I should not write at all. Everyone who reads and posts on this blog are very special to me. Some, I have never met, yet they write such endearing thoughts of encouragement. If for one day, I can take one thing that was written and focus on it, I can make it until the next day. That's what I have been doing. And sometimes, it is very difficult because you don't know how many days are left. Cathy and I talked about that today. At the beginning of this illness, I thought that by knowing I wasn't going to live until 90, would somehow get me prepared to die. That has not happened yet. Today, I saw a therapist whom I immediately liked and connected with. In a one hour she helped me to realize that I cannot possibly have all the answers now. It seems so simple doesn't it? It is not easy, but knowing that all my friends and family support me is a great comfort.
With love to All,
Ellen

Update

"At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us." —Albert Schweitzer

Ellen is going to need our sparks for the next couple of days! On Thursday, October 16th (at 9:00 a.m.) she has a follow-up MRI to see the results of the first round of radiation and chemotherapy. Then on Monday, October 20th (again at 9:00 a.m.) she meets with Dr. Nicholas Avgeropoulos (Dr. Nick) for the results. This is a very trying time for both Ellen, Cathy, their families and for all of us (their extended family). We are all with you Ellen, and will be sending our light your way. Thanks for letting us be with you on your journey!

The past two weeks have seemed endless, and then again, I never seem to get the things done that I deem important. This blog has been a great inspiration, and a task that seems too hard. I do appreciate all that have posted warm and loving messages. I have four radiation treatments left. Then, I'll have a couple of weeks for my body to recover, and my brain synapses to reconnect. Thanks, thanks, and more thanks, to all who have posted messages, and supported me. Thanks to all of you who sent well wishes, gifts, and messages of support. You have all helped more than you will ever know.
With love,
Ellen

Kansas City

Cathy showed and sold her work at the Plaza Art Fair in Kansas City this past weekend. The show was full of love, hugs and tears for both Ellen and Cathy. Ellen you were very missed by all your friends. Betsy and Sally (bottom photo) have a glass of Boulevard beer waiting for you and expect to see you next year on the Plaza!

Feelings are so difficult to express. Those of you that really know me, know that my feelings are creatures that I covet in some small cave deep within. I am always so touched when you respond to something I have written. It really does make my day a little bit better. I'm working on this new life given to me, and yes at times it is challenging, but I'm also learning a great deal about me and the people that love me. When times are trying, I look back at the blog and realize that so many people really do care. Thanks so much for being a part of this journey.
Love,
Ellen

Good Morning,
It is Monday, and just a gorgeous day in Flordia. Of course it's hot as Hades, but that's to be expected here in September. I had a great weekend. We went to the Morse Art Museum in Winter Park. It is simply gorgeous, and so well assembled. It contains the most work of Tiffany anywhere in the world. The amount of glass, pottery, jewelry, and the spectacular Chicago World's Fair Altar are all on display. I was so moved and impressed. It's so nice to experience that kind of beauty and appreciate the artistry. And it is just minutes away!

I keep finding big or little things that make me happy. It keeps me going. They touch my heart, and for just a moment I'm
experience a great peace of just being.

Love to All (especially Saints fans),
Ellen

Just had a nice cup of coffee, and a not so wonderful bowl of cereal. Food really does not taste very good anymore. But, I still do love sweets. Cathy surprised me yesterday with a heavenly box of sweet cakes from Charlie' Bakery. It definitely is a must try if you are in Orlando. I can absolutely recommend the red velvet cake and carrot cakes.

The weather is wet and rainy here. We are already experiencing effects of Hurricaine
Hannah. My summer of radiation has turned into a mother of a storm season. I hope my daily walk is not curtailed. The Orlando area abounds with lakes. It is really quite lovely. Anyway we have been walking around Lake Davis, which we now call Lake Ellen. It is surrounded by lovely homes and a paved sidewalk. This is the time when I loose myself in the beauty of nature, and try ernestly to forget about my diagnosis, or any other problem that might be plagueing me. Can anyone relate? I'm still waiting to wake up one day, and discover that my diagnosis is a mistake. That's when I have to remind myself that I can only live one day at a time.

Love to all of you, especially all our New Orleans friends.

Ellen

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.

Love,
Ellen

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

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,
Ellen

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,
Ellen

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,
Ellen

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

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,
Ellen

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!

  

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