Thursday, December 31, 2009

New Years Eve

Dear Friends

It's New Years Eve and I am sitting next to Ellen as she rests. The day has been quiet and finally, after another day of rain and gloom, the sun has been shining brightly through the living room window. It's been a long and difficult week so a little sunshine is much appreciated.
Ellen has continued to decline each day. She sleeps most of the time and drinks or eats very little. Her sister, Beth and I tend to her needs. A health care aide comes each day to bath her. Friends and family come and spend time next to her, holding her hand, speaking softly to her. She is treated with such tenderness and love, I know she must feel it in their touch. She is more wakeful in the mornings, more alert and during this time there are fleeting moments when I am sure she feels my presence. Her eyes rarely recognize me, but I know she is comforted by my voice and touch.
This process, transition from life to death, is painful to witness, but it is also a beautiful experience. I feel blessed she has allowed me to be a part of it, to allow me to care, comfort, and stay with her through these past weeks. I am amazed by her strength and comforted in turn by her peaceful acceptance of all that is happening to her body. She has taught me for so long how to truly live every moment and now she is teaching me how to let go. It is such a gift.

I have appreciated, so much, all of your support, kind words and prayers. Your simple messages have brought me comfort when I have needed them most. And I know, I believe, Ellen has heard you all.


Friday, December 25, 2009

Christmas Day

Dear Friends

It's Christmas Day. I am sitting next to Ellen who is lies sleeping in a hospital bed placed in the center of our living room. We are alone and quiet while her sisters, who have been here almost constantly for over a week, attend Christmas mass.
Ellen's cat, Iggy, her companion of 14 years is curled up next to her. It is beautiful to see them find comfort in each other.
Ellen has continued to decline in a short period of time. She is confined to the bed, unable to move as the right side of her body becomes weaker. She eats and drinks in small amounts. She sleeps lengths of time induced by pain relieving morphine. She cannot communicate, but understands those who come to visit. Words are no longer neccesary as she speaks with her eyes and a sweet smile for those lucky enough to catch her awake.
I sleep next to her at night, here on the sofa. I wake up often, checking on her, caring for her, telling her how much she is loved. I know she hears me, but I know she is going deeper and deeper into a place which is hers alone. Yesterday I went to the Father Seelos shrine to pray. Not for healing anymore, now I pray for her freedom. It will be so hard to lose her, but I know she is getting ready to leave.

I am asking you all to continue sending your words of love. I know they comfort her heart when I read them to her and I find great comfort in them as well.

I know she hears you.
much love,

I know she hears you.

Sunday, December 20, 2009

December 20

Dear Friends

In the many times we have written in this blog, both Ellen and I have tried to keep the news positive, always looking forward with hope. This time, I can't give you such an optimistic spin. Ellen declined again this past week, not such a dramatic change, but she became physically weaker and more withdrawn. I hoped it was just a reaction to the chemo, but by the end of the week I had to accept it as tumor progression. After consulting with the Doctor, Ellen's sister and I made a decision to call Hospice. Since Ellen can barely verbalize needs and is now quite weak I was concerned about both her safety and taking proper care of her. Obviously, this was a very difficult choice to make, knowing where it now will lead.

This was a long, hard and painful week. I feel great sadness as I lose a little bit more of this amazing woman every day. She is so strong and full of grace I can't help but accept this is the journey she chooses to make. All I can do now is just love her and stay close.

And that is what I am asking you to do as well. She can understand the messages you send as I relay or read them to her and I know she finds comfort in your prayers. Please keep her close.


Tuesday, December 15, 2009

December mornings

Hello Friends

As usual, it's early morning. We've had several days of gloomy weather with rain and it's almost enough for me to wish we were still in sunny Florida. If it weren't for the occasional shrimp po-boy, we might have fled the city.

Ellen has up and down days, mostly due to the stages in the chemo treatment she took in late November. It affects the bone marrow and her ability to create new red blood cells so at this point her counts are low and she feels really tired. The good news is she is also feeling better some days. If the chemo wasn't having some effect on the tumors she would be declining rapidly. Hopefully, she will begin to have more energy in the coming week, so she can enjoy Christmas.

We have been enjoying a bit of the city, sometimes going to the levy by the river, sometimes a ride through the French Quarter or an ice-cream adventure. She loves trips to the Father Seelos Shrine which is part of a Catholic Church located in the Irish Channel. It's been comforting for her to spend time there in the chapel. On weekends, there's always a Saints game to watch, usually with good friends or family around her. All of it has made the effort of moving here worthwhile as I know she is finally happy and home.

I want to thank all of you again, for all your support and kind thoughts. Ellen has been so appreciative of all your gestures of love. She can't read your cards and can't talk on the phone very well, but she knows you are supporting her and is very much touched by all of it. Me too.
more later.

Friday, December 4, 2009

December Mornings

Hello All
It is early morning here. Ellen is asleep and I am, as usual, up and finding things to do.........
Ellen is stable, growing a little stronger physically, but still having difficulty with communication. It's frustrating for her as she can understand what others are saying to her, but cannot form the words to express herself. We have formed a whole new language with each other that includes a lot of sign language, nodding, and blank stares. Somehow, many times, we actually understand what the other is trying to communicate. Somehow, most of the time, we both end up laughing at how ridiculus we both are.
Since coming home, we have been enjoying the city, but mostly enjoying the frequent visits of friends and family. I think it's the highlight of Ellen's day for people to knock on the door and spend a few minutes chatting with her. To me, it's such a showering of love and it is exactly why I wanted to get her home to New Orleans. Some days are good and full of laughter and some days are hard, long and painful, but I know for her every one of them is precious and appreciated. She is really a strong and amazing woman.
I know some of you might be more comfortable with emailing as a response to this blog--you can connect with me at:
More later

Thursday, November 26, 2009

Dear Friends
Cathy here. It is early Thanksgiving Day. I laid awake at 5:00a.m. and thought about all I am thankful for on this misty New Orleans morning...........

Ellen and I have made the transition home. It hasn't been easy, but we had a lot of help along the way and we are now settled. I can't begin to express how happy Ellen is to be back here, she and I were both in tears as we drove back into the city, and yes, she has already enjoyed her first beignets. I do believe being home has given her the strength to get through this difficult point in her illness and treatment.

This past weekend Ellen's cognitive ability declined rapidly. After a night in the hospital and a number of tests, it was determined the tumors had grown significantly in size. They grew so rapidly they bled in to the brain which in turn affected her speech and short term memory. She did receive a chemo treatment at the hospital, which she tolerated well and will hopefully suppress the tumors for awhile. She is home now, fatigued from the chemo, but feeling a little better. We are learning to communicate in a different way as Ellen can understand what I am saying to her, but cannot express herself.

Despite this turn of events, there are many, many things Ellen and I are both thankful for. We are home, in the city we love, with the beignets we love even more.
We have the most amazing friends and family, who have supported and loved us unconditionaly, who have helped me make the move possible for Ellen. All of you who have called and left messages for us, sent love to Ellen, have prayed for her; thank you so much. We have been carried home, lifted up by your love and support. I am so thankful for all of you.

I'll be posting updates more often now, so I can communicate to more of you what is happening in Ellen's journey.
Again, thanks and love to all of you.

Thursday, October 29, 2009

The Latest News

Hello again.
Cathy here, with an update on the lastest news.
Ellen had an MRI this past Monday with an appointment with Dr.Nick on Tuesday. The tumor area which had recent radiation appears to be stable. The blood which was clouding the MRI has been mostly reabsorbed and Dr.Nick could see the mass had not increased in size. Ellen does have two other areas which have "signaled", meaning there are tumor cells growing. They are small spots, but hopefully will respond to chemo treatment. Dr. Levin, at MDAnderson in Houston, will review her scans and determine if there is a clinical trial available which would benefit Ellen. The back-up plan is a round of chemo treatment which she would begin in 6 weeks.

In the meantime, we are moving! Ellen is very happy and excited about the return home. The movers come on the 9th of November and we should be set up in New Orleans around the 13th. Our new address will be: 1031 Fern St. New Orleans, LA 70118.
We are both looking forward to friends and family, streetcars and crawfish, love and laughter.
I will post another update soon. Thanks for all the loving thoughts and prayers.

Sunday, October 11, 2009

Back to the Big Easy

Hello All
Cathy here again. Just wanted to pass along some good news! Ellen and I will be moving back to New Orleans, hopefully mid November if all goes well. We spent a few days there last week and located a beautiful home in the Riverbend area, which we both love. It will be close to the streetcar, several business's and many friends. I haven't seen Ellen this happy for a very long time, so we both know this is absolutly the best decision in many ways. Ellen will be closer to her family in Lafayette, which is only two hours away. We have met with a Doctor in New Orleans who is experienced in working with the type of cancer Ellen has and who will work with Dr. Nick in Orlando in handling Ellen's care. It is all good and we are both excited to be returning home.
Ellen is doing well right now. We have another MRI and visit with Dr. Nick on October 27. Hopefully, the bleed will have been reabsorbed and a clear view of the tumors will reveal they have become smaller in size. Maybe the damn little bastards have completly disappeared. That is obviously my very most biggest hope. I suspect you all probably feel the same way..............
I'll write again soon.
love to all and thanks so much for your kind thoughts and wonderful prayers.

Thursday, September 17, 2009

Our visit with Dr Nick..........

September 17

Hello--Cathy here.

We learned a lot during our appointment with Dr. Nick this morning. First of all, he believes the radiation has had an effect on the tumors, but the MRI scans are difficult to read because of a large amount of blood in the same area. Apparently, in the week before she began radiation, she had a brain bleed. This was due to either a chemo reaction or the tumors themselves, but was most likely the reason she lost cognitive ability. It will take awhile for this blood to be reabsorbed by the body, but her cognitive ability should improve with time. It is similiar to the effects of a stroke. I can tell you she was very happy to hear there could be improvement!
She will continue with an oral chemo treatment for six weeks and then have another MRI. Hopefully, by that time, the blood will be reabsorbed and a more clear MRI scan will reveal how effective the radiation treatment has been.

We are both relieved and encouraged by this news. We thank all of you for your wonderful messages and powerful positive energy---I am absolutely positive it has made a difference for Ellen.

More soon

Sunday, September 13, 2009

An update on Ellen

Sept.13 2009

Hello everyone, Cathy here, just wanted to get out an update on Ellen.

Ellen finished her radiation treatment two weeks ago and has been slowly recovering from the intense nine day treatment. Fatigue related to the treatment has been keeping her "lying low", but she is slowly getting her energy back. She has also been dealing with some cognitive decline as the tumors grew so rapidly in the two weeks before beginning treatment. We hope, when the swelling from the treatment subsides, she will regain some of her ability. Right now, she has difficulty with reading and short term memory loss, but we continue to work through and around some of the problems related to this. To be honest, it's been a difficult few weeks.

Ellen will have an MRI this coming Wednesday, with an appointment on Thursday for results. This MRI will determine how succesful the radiation treatment has been.
We are hopeful, but anxious. The waiting is always stressful.

All of you have been so wonderful and supportive. Both Ellen and I have so appreciated the positive love and energy you send us. Please, sometime this Tuesday evening, send up a little prayer for Ellen. All that positive energy will be needed for the MRI on Wednesday morning.

Ellen sends her love. Me too.


Tuesday, August 18, 2009

Update on Ellen's Treatment

Hello Friends

Cathy here. Just wanted to fill you all in on recent developments in Ellen's care.

We returned from Houston/MDAnderson somewhat discouraged as Ellen was not eligible for any clinical trials. There was a mix-up with her MRI's not being sent for the appointment and at the time we wondered if we had made a mistake in making the trip. However, once Dr. Levin(the neuro-oncologist in Houston) received all the MRI information he needed, he discovered something very interesting. When Ellen had her initial radiation last Fall we had assumed the treatment had failed as Dr.Nick read the MRI taken after the treatment and determined the tumors were still present. When Dr. Levin read the same MRI he determined the radiation had actually been succesful. Ellen had a rare occurance of radiation necrosis which resembled brain tumor. Her MRI's are difficult to interpret because of this. Dr.'s Nick and Levin had a pow-wow and during this conversation he convinced Dr. Nick a course of radiation would be the best course of treatment.

So, Ellen started a nine day course of radiation today, along with a type of chemo agent which is easy for her to tolerate. It is an intense course of treatment, but she needs to get these tumors under control as soon as possible. We will know more results in a few weeks, but we are very hopeful as there is a fairly high percentage of success this radiation will be effective.

Again, thank-you so much for all your positive thoughts and encouraging prayers. We do feel the power of your love and concern.
More later!
love, cathy

Saturday, July 25, 2009

Heading To Houston

Hello everyone. We had an amazing trip to Lafayette and New Orleans over the Fourth of July holiday. It was great to see my family and so many friends. When we returned to Orlando I had a follow-up appointment with Dr. Nick which showed that the past chemo treatment has not been entirely successful. The original tumor has metastasized into the occipital lobe on the left side of my brain. Dr. Nick has suggested that I travel to M.D. Anderson in Houston to see if I can be accepted into a clinical trial. Cathy and I leave Sunday afternoon for three days of tests. Thank you for thinking about me. I really appreciate your thoughts, your love and your comments. I will keep you posted on my adventures in Houston.
Love, Ellen

Monday, July 13, 2009

Monday, July 13, 2009

Tomorrow morning, Ellen will have her next follow-up MRI. The last one was let's all send some positive energy to Orlando, Florida to keep the positive news coming. We are all praying for you Ellen and clogging the airwaves with love. Love, Donna

Tuesday, June 2, 2009

Positive Energy update

A big thank you to everyone who participated, sent spiritual support, or even gifts to Cathy and me. We received positive news once again. The MRI showed no significant growth in my new tumor, and the original tumor is also stable. Needless to say we are expremely happy, and ready to attack the tumor with another chemotherapy agent. I will begin this new agent, called Vepesid or VP16 this week. The course of treatment calls for three weeks on and three weeks off in addition to the other two agents I receive now. I have been feeling extremely good! Enough, to enjoy a very relaxing trip to New Smyrna Beach. It was incredibly beautiful and relaxing. This next treatment might even include a course of radiation. The important thing is I feel so blessed to had made it to this point in the treatment. So thanks again to all of you, and especially Cathy and Donna who spearheaded the day of prayer and positive energy.
I love you all,

Wednesday, May 27, 2009

May 27, 2009

Cathy and Ellen enjoying the view at "Lake Ellen".

The best remedy for those who are afraid,
lonely or unhappy is to go outside,
somewhere where they can be quiet, alone
with the heavens, nature and God.
Because only then does one feel that
all is as it should be and that
God wishes to see people happy,
amidst the simple beauty of nature.
--Anne Frank

I have been meaning to post this photo for a long time. I took the shot when I visited Ellen and Cathy back in November at a place they like to go for walking and sitting and just being. They appropriately named the body of water Lake Ellen and it makes me feel good whenever I look at the photo.

Cathy asked me to update everyone on the news from the past couple of weeks, so here goes. Two weeks ago Ellen's MRI showed that the tumor had grown back in two places. It is not unusual for this type of tumor, but it does mean that the current chemo combination she was on was not working and would have to be changed. The doctor felt the need to aggressively fight these new tumors with three types of chemo over a three week period. On Tuesday, June 2nd (at 7:45 a.m.) Ellen will receive another MRI to see if the tumors are responding to the treatments. This is where all her friends and family are needed. When she was in surgery, we all did a group prayer, did a meditation, lit a candle, looked at the sky, and sent loads of positive energy her way. She needs that again. So wherever you are on Monday evening, let's help her attack those tumors with all the energy we can muster! And send those positive telepathy, by e-mail and by phone!

We are with you Ellen (and Cathy)...sitting at Lake Ellen and enjoying the view.
Love, Donna

Tuesday, April 7, 2009

april 2009

Hello! Cathy here. Just wanted to give you all a bit of an update.
Ellen continues to do well. She had an MRI last week with results showing improvement in the area where the tumor was.
The little cancer bastards are running like Hell! The two week schedule of chemo is difficult on her, fatigue, nausea and
loss of appetite seem to be the worst. She's getting a little skinny, but still looks pretty good to me.......

We are going to Louisiana the end of this month, me to do Jazzfest, Ellen for a visit with family in Lafayette. I am working
more in the studio, mostly to stay out of trouble, but I have been enjoying the process of creating again. I'm looking forward to seeing friends, selling art and eating White Chocolate Bread Pudding from my favorite vendor at the Fest.

Ellen is looking forward to spending time with family. We are looking at the possibility of moving to Lafayette during the
summer and so will be exploring the area for a place to live during this visit. I'd like a house with extra studio space and a large swimming pool, but so far I haven't been promised anything yet......I'll keep you all posted.

I want to thank everyone for continuing to call, or send cards, or send loving thoughts our way. You really have no idea
how much it helps, how much it keeps both of us in a positive place and how much we appreciate it. Our friends have
carried us when things have been the hardest and neither of us will ever forget that.

Till next time.

Thursday, March 5, 2009


Way too long since my last post. I am doing well. As some of you know we took a trip to Louisiana the weekend prior to Mardi Gras. It was terrific seeing my family, friends, and the beautiful landscapes that I have come to miss. Who would have known that a bayou has such mystic? Our friends, Susan and Sam, hosted a porch party at their home on Saturday afternoon. We sat on the front porch on St. Charles Avenue eating quiche, sipping mimosas, and eating strawberries dipped in some kind of fantastic liquor cream sauce. I really do miss New Orleans!

Anyway, we continue to hang in here. My treatments are still every two weeks, and for the most part I tolerate them fairly well. Cathy has been my rock! Thanks to all of you who keep us in your thoughts and prayers.


Monday, January 5, 2009

2009--the best news

I have the best news to share with you! I saw my doctor today, and he told me that according to the MRI my tumor has shrunk. Cathy and I are so ecstatic. Thank you, thank you, and thank you for all your love and support. We would never have gotten here without your ending faith, hope, and prayers. I thank God too, because none of this is possible without his love and support. I still need to continue with the chemo. Anything is possible--thanks for this miracle.