Symposium and Craig Update
WOW!! This symposium was by far the most insightful, emotional, personal and influential one I have been to. I spent the ENTIRE day Thursday going from Senator's office to Senator's office then to Congressman's offices. I think I have a blister the size of Rhode Island on my big toe. 
I did not get to meet with many directly. However, according to Sue Vento, who's husband was a Senator and died of meso, explained to me that it is better to talk to their staff because they are the ones that will do the research and actually bring it to the Senator's attention. She said that the Senator's do not have time to go through everything that cross their desk and they have people who actually research what the Senator sees. I thought that was pretty interesting!!
It was by coincidence that this bill was "hot lined" (that's DC lingo, for getting something passed quickly) on the day we were there. Senator Patty Murray sponsored the bill and told us to pass a hot line bill you need 100% yes votes. So she told us to go in and tell our personal stories and off we went like little soldiers. When we talked to some of the Senator's staff they were amazed that asbestos was still legal in the USA, that little funding was being put towards finding a cure, and that the Dept. of Defense does not spend one penny towards helping to find a cure even though 1/3 of meso victims are veterans. When we told them that this bill would ban asbestos, help fund research and help in getting treatment easier for patients, they all seemed to support it. Many of them were quite young and when we told them that they to could one day be an innocent victim because it was in basically all houses built from 1940 -1980 I think it opened their eyes to how easy it is to be exposed and not even know it.
So now the hour comes. Senator Murray says it is time to go to the floor of the Senate and present the bill. ALL of us sat and waited......It was only about 20 minutes later and in came champagne! It passed the Senate. Now we have to get it through the House. So if you would like to email me I will give you the information when I get it. If you could write your congressman about Craig's story and how it has affected our lives and yours we would really appreciate it. Senator Murray said that being an election year really helps and that personal letters do make a difference.
This is about as close as I have ever come to being an activist! But I really do believe this is a life or death product that should have been banned years ago. It also deserves research dollars. We as patients and friends of patients are one of the biggest contributors in finding a cure. And let me tell you in the scope of cancers (breast, prostate, colon, etc) it is not much. We need government funding, but first we need them to admit this is a dangerous product and to stop putting us all at risk.
After all of the above went on we had a candlelight vigil on the lawn of the Capital. I cannot put into words how beautiful, touching and emotional this was. It was at sundown, with the Capital in the front and the Washington Monument in the back. We stood shoulder to shoulder those fighting the disease, caregivers, those who were grieving the loss of a loved one. Strangers united. As we lit our votives we were instructed to say out loud people we were thinking of. People we were honoring, memorializing, thanking. As each votive was lit, Craig and I said the names of those we lost, those who are battling and those who have blessed our lives. All of you were collectively named as a blessing in our lives. I can tell you there was not a dry eye. We were reaching out and holding onto two women who were there alone. I am sure they were there remembering a loved one. We did not speak a word. Just a hug.
Craig wrote about my speech. I have to say that Deb, I did FLY!! I think for the first time, I wasn't afraid. I spoke from my heart. The words just came out and people listened. The other speech went fine and the break out session was good too. So I have to say for my first time as the Volunteer Coordinator for the Mesothelioma Applied Research Foundation, I am proud of the job that I did and that we did as a group!
CRAIG UPDATE:
Craig is going to have surgery in NOV. For sure he will have a skin graft. Dr. Chabot is not quite sure how to handle the fistulas. We asked him about total removal of the non-functional bowel. He said that he thought that this would be a life threatening operation. He also said Craig could lose his leg or a kidney due to scar tissue connecting to these or other vital things. So Craig is going to get a fistula gram this week and we will send Dr. Chabot the results. He may be able to do something to help with the drainage, but we may have to live with this forever. I'll take drainage if it means having Craig!! He is up to 180#. He does have a new little problem...frozen shoulder. This has been causing him quite a bit of pain. He starts physical therapy and had two cortisone shots, so hopefully that will start filling better soon.
BELIEVING.....Shelly
I did not get to meet with many directly. However, according to Sue Vento, who's husband was a Senator and died of meso, explained to me that it is better to talk to their staff because they are the ones that will do the research and actually bring it to the Senator's attention. She said that the Senator's do not have time to go through everything that cross their desk and they have people who actually research what the Senator sees. I thought that was pretty interesting!!It was by coincidence that this bill was "hot lined" (that's DC lingo, for getting something passed quickly
) on the day we were there. Senator Patty Murray sponsored the bill and told us to pass a hot line bill you need 100% yes votes. So she told us to go in and tell our personal stories and off we went like little soldiers. When we talked to some of the Senator's staff they were amazed that asbestos was still legal in the USA, that little funding was being put towards finding a cure, and that the Dept. of Defense does not spend one penny towards helping to find a cure even though 1/3 of meso victims are veterans. When we told them that this bill would ban asbestos, help fund research and help in getting treatment easier for patients, they all seemed to support it. Many of them were quite young and when we told them that they to could one day be an innocent victim because it was in basically all houses built from 1940 -1980 I think it opened their eyes to how easy it is to be exposed and not even know it.So now the hour comes. Senator Murray says it is time to go to the floor of the Senate and present the bill. ALL of us sat and waited......It was only about 20 minutes later and in came champagne! It passed the Senate.
Now we have to get it through the House. So if you would like to email me I will give you the information when I get it. If you could write your congressman about Craig's story and how it has affected our lives and yours we would really appreciate it. Senator Murray said that being an election year really helps and that personal letters do make a difference.This is about as close as I have ever come to being an activist!
But I really do believe this is a life or death product that should have been banned years ago. It also deserves research dollars. We as patients and friends of patients are one of the biggest contributors in finding a cure. And let me tell you in the scope of cancers (breast, prostate, colon, etc) it is not much. We need government funding, but first we need them to admit this is a dangerous product and to stop putting us all at risk.After all of the above went on we had a candlelight vigil on the lawn of the Capital. I cannot put into words how beautiful, touching and emotional this was. It was at sundown, with the Capital in the front and the Washington Monument in the back. We stood shoulder to shoulder those fighting the disease, caregivers, those who were grieving the loss of a loved one. Strangers united. As we lit our votives we were instructed to say out loud people we were thinking of. People we were honoring, memorializing, thanking. As each votive was lit, Craig and I said the names of those we lost, those who are battling and those who have blessed our lives. All of you were collectively named as a blessing in our lives. I can tell you there was not a dry eye. We were reaching out and holding onto two women who were there alone. I am sure they were there remembering a loved one. We did not speak a word. Just a hug.
Craig wrote about my speech. I have to say that Deb, I did FLY!! I think for the first time, I wasn't afraid. I spoke from my heart. The words just came out and people listened. The other speech went fine and the break out session was good too. So I have to say for my first time as the Volunteer Coordinator for the Mesothelioma Applied Research Foundation, I am proud of the job that I did and that we did as a group!
CRAIG UPDATE:
Craig is going to have surgery in NOV. For sure he will have a skin graft. Dr. Chabot is not quite sure how to handle the fistulas. We asked him about total removal of the non-functional bowel. He said that he thought that this would be a life threatening operation. He also said Craig could lose his leg or a kidney due to scar tissue connecting to these or other vital things. So Craig is going to get a fistula gram this week and we will send Dr. Chabot the results. He may be able to do something to help with the drainage, but we may have to live with this forever. I'll take drainage if it means having Craig!! He is up to 180#. He does have a new little problem...frozen shoulder. This has been causing him quite a bit of pain. He starts physical therapy and had two cortisone shots, so hopefully that will start filling better soon.
BELIEVING.....Shelly
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