FYI to anyone who loves someone with cancer
April 3, 2007 on 5:06 pm | In LMS | No Comments|
Hello my friends
Yesterday I sent out the donation announcement. Today, this drives it all home for me. It is clearly up to us as individuals to find a cure.
I do not usually talk politics, but this is a MUST-READ
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FYI to anyone who loves someone with cancer-
Our fearless leader, George DUBYA Bush partially funded his war by doing the following- “In December 2005, President Bush signed a bill that provided $31 million less for cancer research than the year before, according to the American Association for Cancer Research. This was the first hard cut since the passage of the National Cancer Act in 1971. More recently, the president announced his proposed budget for fiscal year 2007 – it slashes an additional $40 million from the already reduced 2006 funding level.” Even I, with my limited math skills, can add up the $71,000,000 taken from cancer research. REMINDER- This is why we have to get our own funding, and remember, SARCOMAS account for about 1% of all cancers. Leiomyosarcoma accounts for about 7% of all SARCOMAS. NOW YOU DO THE MATH. PLEASE MAKE A DONATION TODAY. www.LeorasLegacy.com
I apologize in advance to anyone I am about to offend, but I am furious about this news.
So my daughter’s dead…at least we killed a bunch of people in some foreign country.
Please repost
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Leora’s Legacy Donation page is active!! PLEASE PASS IT ON!
April 2, 2007 on 3:53 pm | In LMS | No Comments
Leora’s funeral service – I finally watched it
March 8, 2007 on 2:52 pm | In LMS | No Comments
It’s been almost four years now.
Today I took the mini tape that Echo’s mom gave me of Leora’s service to the video store and had it converted to DVD.
It is an hour long. I came home, put it in the computer and watched it by myself.
This tape has been all over my house. Mostly, it has been in this little basket by my front door, where we keep the mail. I guess it was a good place to keep it in case I had some spur of the moment bug up my ass and decided to take it with and have the DVD made. Lately, it has been sitting right on the base of my monitor, staring at me.
On Monday, I made a list of all the phonecalls I have been neglecting – dental appointments for the boys, Sky’s glasses, doctor for Travis, paint job for my car, oh yeah – and find someone who can convert THE TAPE to DVD…
Every so often, somebody asks me if I have done it yet, and I say, “No, but I will soon.” Tara was the latest one. Coincidentally, I actually had called and found a place the day she asked. It still took two days to get it there, but I have done it! BIG step.
So there I was today, holding my breath, waiting to see all the things that I almost immediately forgot so long ago.
To my complete surprise, there were messages from many of you kids and other people who were there too. The first face was Scott Botting, our own personal family cop- Margate’s finest. There were Leora’s wish grantors, Bruce And Nancy, our channel 4 news friends, Lynne and Sean, the lawyer team and families from Tripp Scott, who helped us so much. I haven’t seen these faces in so long.
Then there were the messages from the kids. Dear god. I thought my heart would explode. So many of you were so full of emotion, you couldn’t speak, or you couldn’t finish the message. As the camera frequently pans around the sea of pink, I see faces I love, faces I don’t recognize, many faces I have met since that day, and some faces I had forgotten. I saw pain and love and smiles.
As I watched all of this, plus my best friends talking, then myself talking (on and on and on…), and the girls who tried to gather themselves together long enough to read the poems they had written, I cried harder than I have cried for a long time. But it wasn’t that gut-wrenching, agonizing crying that came so often back then. I cried over the feeling of overwhelming love and true, raw emotion that I could feel just watching this. It took me right back there to the time when we all hung onto each other, and nobody held anything back. We all felt everything that day.
I realize that I have recently come to a new place in my grief and my healing that made me ready to watch the service. I just couldn’t do it up to now. I was afraid to go back there. After the service, I literally forgot almost everything about that day. I honestly don’t remember the day after she died, the week between then and her service, of most of the first several months after she was gone. To be honest, my memory sucks! It’s never been the same since then. They say it’s trauma, and it’s common. It gets frustrating at times, but I guess it’s a protective thing. I mean, who could really stand to remember all that?
I am mentally exhausted after my viewing today. I did all I could for one day. Tomorrow I will see if I will be able to burn copies, and I will post a bulletin to let you all know.
I did actually have a point through all my ramblings here.
To all of you who were there through it all, I love you, and I thank you. You are so incredibly courageous.
To those who couldn’t be there when it was happening, be glad you can remember Leora the way she was. I am thankful that some people remember her before cancer.
To those of you who were there because of her cancer, bless you for the often heartbreaking choice you have made in life to help people like us.
To those who took her loss, and bettered yourself because of it, I am so very proud of you.
To those who fell back because of her loss, find a way to pull yourself up. Use her as an example of how to live. No one had it harder than she did, and she never gave up. Your body and your life are a gift. Treasure them.
To those who never knew Leora, there are a million stories out there about her, and how she fought to be happy all her life, then she fought to the death to live. She inspired us all, she made us laugh, and she made us all realize what really was important.
Just for a minute, we all had one heart, one mind, and one soul we shared with each other, with no walls and no defenses. We need to remember that feeling, because that is one of the many gifts this child gave us.
We need to tell her story over and over for the hundreds of others who are still suffering. The world needs to know Leora. They need to know that our enemy is Leiomyosarcoma. It killed my daughter, and it is killing others. But it isn’t killing enough people to get attention. So it is up to us to be Leora’s voice now that she cannot speak.
I have to believe that everything happens for a reason. Her death cannot be for nothing. As much of a lesson as we all learned about life from her, there is a higher purpose to her death as well. LMS has always been just a handful of adults who die. It never got attention. People pay attention when children die. Leora is the face of Leiomyosarcoma that I want to show the public. Funding is needed for research, and those suffering need a cure. They need Leora and her story to save them.
We know what happens to the friends and families left behind, and WE WILL NEVER FORGET.
I will be starting fundraising events this year. Any of you who are interested, let me know.
Much, much love, Jeri
Just when I thought I knew myself so well…
February 14, 2007 on 6:03 pm | In LMS | No Comments
I have a MySpace – okay, I have THREE MySpaces – for three different purposes.
I have my personal friend page and my business page, where I sell my products (www.myspace.com/boobease).The most recent page is the newest phase of my grieving process. I didn’t know it was, but [my higher power I choose for simplicity's sake to call] God led me to it. I have been compelled for the better part of the last four years to raise awareness that Leiomyosarcoma (the cancer that killed my daughter) exists. Because it is a rare cancer, it does not receive funding for research like the more common cancers do. Those of us who have been affected by this disease are driven to help find a cure.I suddenly became ready, about a month ago, to post my page. I called it “Leora’s Legacy”, and gave a little background and info. WOW- what a response the page has received!
Upon thinking about how I should have done this a long time ago, I realized that I was not ready before now. I spent the last few years sorting things out, and taking care of my little family, so we could heal. Hindsight being what it is, I am seeing how I have gone through this odyssey we call grief just as I was meant to. I have progressively risen to different levels of healing as I go. Of course, I would prefer to know I am doing this as I go, but for whatever reason, I guess I am not meant to know until I have moved through it.
When I posted the MySpace page (http://www.myspace.com/leoraslegacy) a floodgate was opened of others affected by this disease. People from everywhere are contacting me. LMS attacks only hundreds of people, but the ripple effect is enormous. Each one of those hundreds has many people who love them. I realized this is not a futile cause! Awareness is not hopeless!I’ve spent the last several weeks trying to analyze the intense emotions I have been feeling. At dinner the other night, Fran and I sat across the table from each other, and he asked me how my page was going. My eyes immediately welled up, and I felt as though I would burst. The best I could explain to him what was happening is that I feel this tremendous power inside of me. My body buzzes, and I feel so emotional. All of these people are reaching out to me, and I FEEL them. I feel their love, their strength, their fear & frustration, their anger, and their need to reach out to me as if I am their hope.
He asked me if this power was a good or bad thing. I told him I wasn’t sure, and that it scares me to death. He said, “Maybe it’s divine.”
I instantly knew what he meant. This man that I share my life with struggles with his own relationship with his own higher power, but I knew at that moment that underneath it all, he believes. He had probably made the most profound statement to me that I had ever heard.
I instantly knew what he meant. This man that I share my life with struggles with his own relationship with his own higher power, but I knew at that moment that underneath it all, he believes. He had probably made the most profound statement to me that I had ever heard.I am not a religious person. I am not a Christian. I am spiritual – VERY spiritual. I choose to call my universal power God in most circles, so everone can relate to who I am speaking of. I don’t believe that we have to believe in what anyone else tells us to. But I do think we have to believe in SOMETHING if we want to heal.
During this conversation with Fran, I knew right away that God was doing what God does best – working through other people. If God was sitting across from me, he would’ve said, “DUH!” It WAS divine. This power is something I have never experienced before. I feel a connection to the whole Universe in a way I never imagined. This “power” does not belong to me. It is coming through me. I blocked the flow at first, because it was so powerful that it frightened me. I am now making a conscious effort to let it flow. My mind is now calm, and all of the ideas I have been rolling around in my head are becoming complete.I am asking for guidance through this stage of healing. I didn’t realize how much I had stopped feeling until this hit me. Part of the trauma of losing my daughter, I’m sure must have caused certain parts of me to shut down somewhat. It wasn’t enough for anyone who knows me to notice. It wasn’t even enough for me to notice myself. In fact, I didn’t realize this until just now as I am writing this (ahhhh, the power of writing…) I have been just as loving and affectionate as always. I am still attentive, and open. All this time we all thought I was doing so well after I lost Leora, who would’ve known that I was so different on the inside? I was Me, only a different Me – but not THAT different.
This new rush of emotions has been quite overwhelming. Ever since Leora has been gone, I have been committed to helping others, whether it be grief support, fundraising, or anything related to the issues close to my heart. I have spent the last few years helping others heal from grief, especially those who had lost someone to cancer, and those who have lost children. What I stopped short of, however, was helping the people who were actually afflicted with the disease, or the children who were dying. I could volunteer for Make-A-Wish, but could not meet the Wish Kids. I could spread the word about LMS, but I could not become personal with the people who have the disease.
These things I “could not do” have turned out to be the things that are suddenly accelerating my healing. When I posted the page on MySpace, I was immediately befriended by people with this rare and cureless cancer, and their friends & families. I couldn’t help myself. I was compelled to love them back, and I can’t stop.
So how do we know when we are truly healing? Maybe it is when we are willing to risk it all and love someone we know we may lose, just because it would make life so much more empty if we didn’t do it. And that, as Fran said, must be divine.
Welcome to My Blog!!!
February 10, 2007 on 10:02 am | In LMS | 2 Comments
I am not quite sure why it took me so long. I have been suspiciously eyeballing the “Start a Blog” button on my administrative control panel for about two years now, but could never quite bring myself to hit the button.
As most of you know, the Shining Light Grief Support website has been up for about a half a year now, along with the monthly newsletter. The response has been steady (slow & steady wins the race, right?), and very positive.
But Ahhhh, I never imagined the power of MySpace! A few weeks ago, I woke up out of an apparent three and a half year sleep, and thought, “Hmmmm, I need to create the Leiomyosarcoma Awareness page that I have been rolling around in my head for the last few years.” I decided to create it on MySpace.
HOLY COW!!! You could’ve knocked me over with a feather…the response to this page is unbelieveable.
Quick education of what Leiomyosarcoma is: It is an extremely rare and aggressive cancer that constitutes about four in every million cancer cases. It usually affects people middle age and older, but can affect people younger as well. Leiomyosarcoma, also called LMS, is an unusual cancer that affects the soft tissues of the body in the trunk, limbs or head. Attaching itself to blood vessels, it spreads through the blood stream, affecting other areas such as the liver, lungs, and other soft tissue areas of the body. Surgery is the first plan of action for this cancer, due to the resistance it has to chemotherapy and radiation. Frequently, however, many surgeries are needed due to the aggressive nature of the disease. Tumors tend to grow large and fast. There is no cure at the present time for LMS, and remission is difficult to attain. CT scans are needed for the patient’s lifetime, because this cancer can resurface any time in any part of the body.
Because LMS is so rare, most doctors have never seen it, and most of the public has never even heard of it. There are a handful of specialists in just a few teaching hospitals around the country. As a result, little funding is given to researching this cancer to try and find a cure, and many oncologists do not treat it properly.
Secondly – and I struggled with a lot of guilt over this one – I thought that if they found a cure within the fist couple of years after Leora died, I would go crazy, because we could’ve gone to extremes and performed heriocs to keep her alive longer. But her quality of life would’ve been horrible. Her case was too aggressive and too extreme.
I realize now, of course, that these are very normal things to have go through my head, and I just needed time to work them out. I have let things just sort of flow in the natural progression of things, and miracles continue to be placed at my feet.
By posting the awareness page, I have realized by the overwhelming response, that I CAN make a big difference. There aren’t just hundreds of peole who live with LMS. There are thousands! They consist of those stricken with the disease, those in remission, those who did not survive, those who loved and lost them, and those who live with the uncertainty of life every day that someone they love may not be here tomorrow because of LMS. We are everywhere, and we are HUGE!!!
Good God, how did I not see???
By creating that page, I have, for the first time since I lost my daughter, befriended people who are fighting this disease, whether in remission or currently active and the people who dearly love them. It was too hard for me to get close, and possibly lose again. But how can I not love? It just wasn’t me. I don’t know how I ever lived without knowing Robin - who told me I MUST share my stories - while she fiercely battles this disease, and Dyann and her NINE kids that share their intimacy as a family and a tighter family bond than I think I have ever seen. I want to find a cure for them- for the ones who still are fighting and have a chance.
I can see my loss in the grand scheme of things now. I can see Leora was lost so that others may live. Without her loss, who would listen to me? I lost a child. Everyone listens to me. That is the gift that we have all been given. My daughter, like all of us, was put here to fulfill a much higher purpose than anyone knew. She finished her work here. She showed me where she left off and I begin. I have much more work to do now.
Now I am unafraid, and the battle is escalating to new heights…
Stay with me, my friends. We have a long way to go, but together we can make it!
Much, much love, Jeri
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