Last May I participated in Brain Tumor Action Week in Washington DC. I received training from the North American Brain Tumor Coalition in how to lobby congress. We visited our Senators and Representatives just before Lance Armstrong and Elizabeth Edwards testified before full congress. Our part was to encourage our senators and representatives to do three things. The first was to end the Medicare waiting period for people who are declared permanently medically disabled because of diseases like cancer. Right now it takes 2 years after a person becomes permanently medically disabled for them to qualify for Medicare. The financial results are often disastrous. The second thing we asked is that May be declared Brain Tumor Awareness Month. The third was for a 6 percent increase in funding for the National Institute of Health (NIH), which has not had an increase since 2002.
When I went to talk with Senator Feinstein’s and Representative Richardson’s health aides, I told them about a friend of mine who was recently widowed. Her husband had succumbed to Melanoma. She was left with substantial debts. The sting of that reality recently hit home again.
I started off Monday after getting back from the LIVESTRONG Summit by signing papers to refinance the house. We’re grateful that we still have a house to live in 3 ½ years after my brain cancer diagnosis. I had some problems with the necessity to draw on what is left of our equity, especially after the housing market has tanked. The fact is, it became necessary. Like most people that find themselves in our situation, we weren’t able to keep up with the bills without accruing some debt. Fortunately we had equity in the house. Hopefully all is set right now. I am still grateful for what we have, but this was a tough pill to swallow.
While I will avoid sharing dirty laundry on this blog and will keep the focus of my communications positive and proactive, I want to share these details from my life to illustrate that cancer has a huge financial footprint. One in two men and one in three women will experience cancer at some time in their lives. If you don’t get it, you will almost certainly know someone who does and may end up being a support person.
I was lucky enough to have income insurance that provided us with a financial foothold when things got slippery. I’ve got 60% of my 2005 earnings, including Social Security Disability and what my policy pays. It has been tough making things work, but somehow they have. Thank goodness I wasn't the only income source in the house. I was able to get Medical to help us through the two year Medicare waiting period. It was a fight. I had to learn a whole new skill set, but eventually I got covered. We were lucky to be California residents. Many other states don’t have this kind of a safety net. If we hadn’t had that, we probably would have lost the house by now.
I strongly encourage anyone who reading this to call our write your Senators and Representatives and make sure they support ending the Medicare waiting period for people who are medically totally medically disabled. I hope you will also encourage them to support increased funding for the NIH. Research to end cancer and many other serious diseases has been slowed down considerably by the halt in funding increases that has occurred during the Bush Administration. On and encouraging note, May has already been declared Brain Tumor Awareness month. With Edward Kennedy’s unfortunate diagnosis, things began to speed up moving in the right direction.
Finally, if you are working and you haven’t already invested in a long-term disability policy, and there is any way you can afford one, they are worth the sacrifice. If we didn’t have that policy, we wouldn’t still be in the house at this point. So this week began with a lesson. I learned it without whole lot of joy, but I’m again trying to remember to be grateful for what I have.
Saturday, August 9, 2008
Monday, August 4, 2008
More LIVESTRONG Snapshots
Blog # 4
Entry 3 left off Friday evening, less than halfway through the LIVESTRONG Summit. Saturday was a good day. There was some good advice on marketing and then another group project; we put on a mock fundraiser party. Our event was a lot of fun. I got to read poetry and play Demo Chef - in addition to informing people about LAF and some of the good work they do.
On Saturday evening, the LAF hosted a huge dinner at the Columbus Zoo. I enjoyed the opportunity to talk with new friends. I didn’t walk around the zoo but I had a great time. While riding back to the hotel with Julie and Keith Houston, I realized what I like about the LAF. It empowers individuals to use their expertise to help cure cancer. Other major organizations I have worked with have seemed much more hierarchical. They allow volunteers to be a small cog in the big machine, but innovation and moxie are not necessarily welcome. Their message has been, “You can help with our gig, but don’t push the new ideas. We’re not really that interested in what you are doing, so just hush up and do what is best for you.” The LAF encourages individuals to take charge of their own solutions. There is an entrepreneurial spirit. I appreciate the option to not have to kiss butt in order to do I want to.
Sunday morning at the summit was really nice. I finally connected with the majority of the brain tumor survivors in attendance. I did a lot of networking throughout the summit. Again on Sunday, I collected a lot of cards.
The closing session at the summit was very impressive. It opened with an address from the Governor of Ohio. Then there was a panel with a former director of the NIH, The Chief Medical Correspondent for CNN, the president of Ohio State University, the president of the LAF and Lance Armstrong. It was a very inspiring group. The speakers throughout the summit were all impressive. Friday morning opened with a speech by amazing doctor from Harlem, NY. He is renown for having created a system that helps low income patients learn to navigate the medical system. The outcomes of increased survival time and quality of life have been amazingly positive. On Saturday Morning we started off hearing from a former Surgeon General. John McCain was there on Thursday evening for the Presidential Town Hall. The LAF did a great job bringing in influential people to meet with us. We were very appreciative.
It’s a week since the summit convened. I still haven’t had time to send out information about my book, Lemonade - Notes To Cancer or my workshops on Healing Through Creativity. All things in their time, I suppose. I was glad to meet so many great people while I was in Columbus. It is a nice big little city. I hope I can go back to spend a little more time there.
Oh-Hi-o!
Entry 3 left off Friday evening, less than halfway through the LIVESTRONG Summit. Saturday was a good day. There was some good advice on marketing and then another group project; we put on a mock fundraiser party. Our event was a lot of fun. I got to read poetry and play Demo Chef - in addition to informing people about LAF and some of the good work they do.
On Saturday evening, the LAF hosted a huge dinner at the Columbus Zoo. I enjoyed the opportunity to talk with new friends. I didn’t walk around the zoo but I had a great time. While riding back to the hotel with Julie and Keith Houston, I realized what I like about the LAF. It empowers individuals to use their expertise to help cure cancer. Other major organizations I have worked with have seemed much more hierarchical. They allow volunteers to be a small cog in the big machine, but innovation and moxie are not necessarily welcome. Their message has been, “You can help with our gig, but don’t push the new ideas. We’re not really that interested in what you are doing, so just hush up and do what is best for you.” The LAF encourages individuals to take charge of their own solutions. There is an entrepreneurial spirit. I appreciate the option to not have to kiss butt in order to do I want to.
Sunday morning at the summit was really nice. I finally connected with the majority of the brain tumor survivors in attendance. I did a lot of networking throughout the summit. Again on Sunday, I collected a lot of cards.
The closing session at the summit was very impressive. It opened with an address from the Governor of Ohio. Then there was a panel with a former director of the NIH, The Chief Medical Correspondent for CNN, the president of Ohio State University, the president of the LAF and Lance Armstrong. It was a very inspiring group. The speakers throughout the summit were all impressive. Friday morning opened with a speech by amazing doctor from Harlem, NY. He is renown for having created a system that helps low income patients learn to navigate the medical system. The outcomes of increased survival time and quality of life have been amazingly positive. On Saturday Morning we started off hearing from a former Surgeon General. John McCain was there on Thursday evening for the Presidential Town Hall. The LAF did a great job bringing in influential people to meet with us. We were very appreciative.
It’s a week since the summit convened. I still haven’t had time to send out information about my book, Lemonade - Notes To Cancer or my workshops on Healing Through Creativity. All things in their time, I suppose. I was glad to meet so many great people while I was in Columbus. It is a nice big little city. I hope I can go back to spend a little more time there.
Oh-Hi-o!
Sunday, August 3, 2008
From the LIVESTRONG SUMMIT
Blog #3
I’m hailing from Columbus, OH, where I’m participating in the second LIVESTRONG summit. 800 of the 1000 participants here are cancer survivors. Take that cancer! The event organizers placed me in the fundraising track for breakout sessions. It was a bit intimidating to end up there. I’m a writer and a poet. I’ve had some luck asking friends and family to support my efforts to get out and read poetry at support groups and conferences. I have really appreciated their help, but I’m not so sure how well I can do it on a larger scale. This must be where faith comes in handy, and I get to reckon with there being some reason I ended up where I did.
The first breakout session was pretty fun. They divided our group of about 110 people into 12 smaller teams. They gave us little digital video cameras and assigned us to film commercials for the LIVESTRONG. We had 60 minutes to film a 60 second commercial. Our message needed to support LIVESTRONG’s mission: “To Make Cancer a National Priority. It also had to convince people to donate to the Lance Armstrong Foundation, and share how that can be done. Collaborating in groups to do this was fun, intense, and at times frustrating. We did okay, but there was another group that really nailed the message. Good for them. This project was a pretty good approach to teambuilding. In the next session, a couple that do a lot of fundraising for LAF talked to us about how they have found success. The central message was to work fundraising into something we already have fun with and know.
Since one of my favorite things to do with my friends and family since my diagnosis with brain cancer has been to play softball, I thought a tournament would be a good way to raise funds and have some fun. So now I have an idea for a fundraiser that could actually end up a pretty cool event.
Well, it’s late in the Buckeye state and I have an early date with my LIVESTRONG buddies, so goodnight for tonight. There’s a jazzy piano trickling out of my Mac book. After a quick shower, I’m knockin’ out for hopefully a nice solid night of snooze. Jetlag be gone! As my homie Keith likes to say, “Peace and hair grease.”
Wrick
I’m hailing from Columbus, OH, where I’m participating in the second LIVESTRONG summit. 800 of the 1000 participants here are cancer survivors. Take that cancer! The event organizers placed me in the fundraising track for breakout sessions. It was a bit intimidating to end up there. I’m a writer and a poet. I’ve had some luck asking friends and family to support my efforts to get out and read poetry at support groups and conferences. I have really appreciated their help, but I’m not so sure how well I can do it on a larger scale. This must be where faith comes in handy, and I get to reckon with there being some reason I ended up where I did.
The first breakout session was pretty fun. They divided our group of about 110 people into 12 smaller teams. They gave us little digital video cameras and assigned us to film commercials for the LIVESTRONG. We had 60 minutes to film a 60 second commercial. Our message needed to support LIVESTRONG’s mission: “To Make Cancer a National Priority. It also had to convince people to donate to the Lance Armstrong Foundation, and share how that can be done. Collaborating in groups to do this was fun, intense, and at times frustrating. We did okay, but there was another group that really nailed the message. Good for them. This project was a pretty good approach to teambuilding. In the next session, a couple that do a lot of fundraising for LAF talked to us about how they have found success. The central message was to work fundraising into something we already have fun with and know.
Since one of my favorite things to do with my friends and family since my diagnosis with brain cancer has been to play softball, I thought a tournament would be a good way to raise funds and have some fun. So now I have an idea for a fundraiser that could actually end up a pretty cool event.
Well, it’s late in the Buckeye state and I have an early date with my LIVESTRONG buddies, so goodnight for tonight. There’s a jazzy piano trickling out of my Mac book. After a quick shower, I’m knockin’ out for hopefully a nice solid night of snooze. Jetlag be gone! As my homie Keith likes to say, “Peace and hair grease.”
Wrick
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