Welcome to My Blog!!!

February 10, 2007 on 10:02 am | In LMS | 2 Comments
     

 

Well, I finally did it.  

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.

That being said, because of the rarity of this disease, the handful of people who actually have it are very few and far between. What I have come to realize is that the amount of people touched by or affected by this disease is HUGE. There may be only HUNDREDS with LMS, but there are THOUSANDS suffering the devastating effects. The realization has had the following effect on me- yes, an AH-HA moment-
As I spent the last few years, since my daughter died from this disease, contemplating how I can best make I difference, I have been heavily involved in helping others heal from grief. It has helped me to heal, and has helped others as well. So I have moved on from one phase of healing to another (over-analyzing every step of the way, I’m sure), but was not ready for THE BIG STEP.   

Actively participating in finding a cure for this disease was overwhelming to me for a lot of reasons.   

First of all, it is so rare, how will I ever find enough people who even care about this little GIGANTIC disease? After all, no senator’s wife, or movie star’s father ever had it (that I know of, anyway), so who is going to listen to me?    

 

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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2 Comments »

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  1. What you are doing is a wonderful thing. My mom and my entire family, even our dogs, [ because without my family, who would spoil them? :) ] thank you.

    You are a wonderful person!

    Love,
    Lacey

    Comment by dyanns2ndkid — February 11, 2007 #

  2. Jeri what you are doing is so wonderful. Letting people know and learn about this horrible disease. I had no idea that it was so rare in people. Leora is loving is Im sure!! Thank you for all your kind words, encouragement and everything!!!

    You are very wonderful!!

    Love,
    Abby

    Comment by Abbs_D — February 13, 2007 #

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