http://www.usatoday.com/news/washington/2008-05-01-genetic-discrimination_N.htm
The Senate approved it 95-0. On May 1, 2008 the House approved it 414-1. President Bush is expected to sign it into law and "it" is an anti-genetic discrimination bill. The lone dissenter was Republican Ron Paul of Texas. Boo, Ron Paul! What principle could you have been standing up for that would make you vote against this legislation?
What does this anti-genetic discrimination bill mean? Here is what I've read coupled with my interpretation through filters of personal experience:
It means that insurance companies would not be allowed to set premiums or determine eligibility based on someone testing positive for BRCA1 or BRCA2 (the BReast CAncer genetic mutation that severely increases the odds of getting breast cancer and ovarian cancer). It means that employers wouldn't be allowed to use that information to affect hiring or firing decisions.
It means our legislation is taking another baby step towards protecting people so that the fear of what discrimination does to the pocketbook is removed from the equation of whether or not to seek genetic testing. It means more people getting tested helps scientists determine links sooner. It means that organizations are finding some success with trying to fight cancer by using politics to remove certain blockades.
To me, this bill means another spark of hope for finding a cure sooner rather than later.
Thank you, activists, for keeping up the struggle to make a positive difference. Thank you, policitians in Washington, for voting for something that makes sense. Thank you, opponents of the bill, for being less organized or not as well funded so that you lost this particular battle.
Now, you put-the-profit-into-the-shareholders'-pockets insurance companies, stop throwing up the blockades to people taking genetic tests! We NEED to study the connections so we can learn more about cancer causation and we DON'T need your concern about money getting in the way.
As you might recall from earlier postings, I took the BRCA test and my results were negative. Like most people, the causation of my breast cancer remains a mystery because this particular genetic mutation is not behind it.
A special committee had to meet to decide whether my insurance company would pay for it or not. They took over a month to decide so that I had to get the necessary blood for the test drawn a second time. The original sample would have been valid material for the test, but the insurance company wouldn't approve using the original sample because it was drawn before the purpose for the sample was approved so I had to submit to getting my blood drawn a second time. Talk about stupidity and inconvenience to the consumer for the sake of red tape!
The cost of the test was $3,150, but I paid $0 because I had already maxed out my deductible and out-of-pocket expenses for the year. I had to call my insurance company to get it straight, however, because somebody initially misplaced the piece of paper that said the test had been pre-approved so the EOB statement I first received from my insurance company indicated that the entire cost was to be my burden and I had to investigate with an agent for them to make the connection and reverse that billing decision.
Still, with all of that drama, that was a stack of minor irritations compared to the rigors of chemotherapy.
As a cancer survivor, I'm pretty much married to group health insurance for the rest of my life now. If I ever decided to be self-employed I would find the cost of health insurance unaffordably high. If I ever allowed my group coverage to lapse for too long of a period between jobs, I would find any new breast-cancer related expenses denied for at least the first year of new coverage as it would become a pre-existing condition. I could rant about the general poor state of the insurance system in my county another day.
For the moment I want to complain about how the same insurance company that allowed me to get the BRCA test because of my relatively young age at diagnosis has rejected the requests of two of my co-workers for the same test.
One co-workers has been through breast cancer, a metastatic recurrence, and has a mother who is a breast cancer survivor. The insurance company doesn't think this mother/daughter connection is enough to merit paying for the test. She has a young daughter and they wonder if she has the genetic mutation and if she has passed it on to her daughter or not. I have a second co-worker who has had breast cancer. She would like to know if she has the mutation because she wonders whether to have her ovaries removed or not. That's a big decision and it's hard to make if you don't know your BRCA status. $3150 is a lot of money to shell out of your own purse, however.
Maybe with this change in legislation preventing insurance premiums from being used as a penalty for people who test positive, then maybe more people will be inclined to take the test. Maybe if more people get tested then the economic laws of supply and demand will kick in and the cost per test will go down. Maybe if the cost per test goes down then insurance companies will be less reluctant to pay for the test.
Maybe. If.
I'm not going to focus on how bitter I feel about these "ifs" and "maybes" probably not going anywhere anytime soon. I'm going to focus today on the glimmer of hope it gives me that enough somebodys cared enough to get this issue going a direction that will utimately help people. And if anyone knows a valid strategy for twisting the arm of an insurance company to pay for my co-workers' BRCA tests, please pass the tips along.
Angela
Next - 64 Grandpa Metastatic
Previous - 62 When Is It Over? Moving On
Thursday, May 15, 2008
Friday, May 02, 2008
62 When Is It Over? Moving On...
It's May 2008. There are SO many things I have thought to write about over the past year. I wonder sometimes if people still want to read about what I think now that I'm no longer in treatment. I'm not the brave soldier fighting for my life these days. I'm back in the ordinary world with commitments and deadlines. My family is my top priority now, rather than survival. Sometime it's still all I can do to make it through the day, but that's life with a 2-year-old.
I know that during the last few weeks of chemotherapy when I was truly sick of feeling like crap constantly and thinking how my initial diagnosis didn't scare me as much as it should have because I didn't know just how awful things would get, I was also dying to know from someone who'd been there how you live your life after treatment. I remember aching to ask a particular Pink Ribbon Cowgirl how she managed her fear of recurrence and the words never left my mouth. I was too timid to ask.
How do you define the "new normal" and how do you go back to living your life after cancer? Different people will have different answers. In case my answers are helpful to another fearful person, I've decided to record a few thoughts in the blog.
Part of taking care of myself is to set aside some time to do the things I enjoy - things that nurture the soul. So I arrange get-togethers with friends, plan the occasional surprise for my family, and I write poetry. Lately at work I have been designing databases. That may not sound like fun to most people, but it is a fantastic combination of left-brain logic mixed with right-brain creativity as far as I'm concerned, and I've had a ball this last week doing it.
I took time off work in April 2008 to attend the Austin International Poetry Festival (AIPF). My Radiation on a Rainy Day poem was accepted into this year's AIPF anthology. That was an honor. By taking time off from work to attend festival events on a Friday, I fulfilled a desire that I've denied myself in previous years. I also got to attend a poetry workshop that encouraged me to works towards writing more and performing more. When my son gets a little older I will seriously consider the performance part. Many thanks to Michael Guinn for driving down from Ft. Worth and hosting this workshop. The man is an AWESOME performer.
A fellow workshop attendee took me aside after the workshop. She, like me, had had a poem published in the anthology and we both read our anthology poems during the workshop. Her husband had gone through two boughts of prostate cancer so she could closely identify with the emotions expressed in my radiation poem. Michael Guinn had asked each of us during the workshop to talk briefly about our histories of writing poetry so I had mentioned that Radiation on a Rainy Day had come about after I attended a workshop he hosted on performing poetry last year.
His workshop in 2007 had had people write for 10 minutes about the first thing that came to mind. The first words of the workshop poem were, "I never knew I was so angry." As I worked on the poem, I realized that I had residual anger issues from having had cancer and from having been traumatized by the cancer treatments. Writing that poem helped me face those issues and heal, and then I reached a new place of balance from which Radiation on a Rainy Day was born.
The Breast Cancer Coalition of Rochester, New York contacted me shortly after the poem appeared in Women & Cancer magazine and they asked my permission to reprint the poem in their quarterly newsletter. Talk about feeling honored! Since my radiation poem has received more attention than anything I've written to date, I wanted the teacher who had inspired me to know what his workshop last year helped spark.
So this woman who has cared for her husband during prostate cancer and its recurrence approaches me and tries to pass along advice she considers to be a kindness. "You have to move on," she tells me. I started to explain to her that I have moved on, I think. I may have written a poem about radiation therapy, but it doesn't mean I'm still dwelling on the emotions and struggles of that point in my life. But there is too much to say in a paragraph or less to this stranger to properly defend this point of view.
As I briefly wonder if my participation in the Breast Cancer Resource Center's Champagne Brunch was some sort of subconscious attempt at not letting go of all the attention I got during the treatment days, she takes advantage of my silence to tell me that she's trying to help me by passing along this advice - her husband's conclusion. He apparently spent some time helping other newly diagnosed people and volunteering for the cause through some means or other, and after a while he decided that his life no longer revolved around cancer. It sounded to me that his way of putting his cancer battle behind him was to stop doing those things. He stopped being available to help others.
Hmmmm...
You know? Each person has to do what feels right to him or her given the circumstances. Some people throw themselves into anti-cancer causes and they make fighting cancer their new life's work. Some people hide their diagnosis, treatment, and cancer history from everyone they can and very few people know it ever happened. Some people volunteer heavily for a while and then burn out. The details are as different as the individuals, but we all have to figure out what we want and what we can handle.
I'm trying to balance and integrate my cancer experience with my life. If "moving on" means pretending it never happened, then I'm not ready to do that. If "moving on" means never writing poetry or essays that refer to cancer experiences or draw from the drama of that time, then I'm not ready to do that. If "moving on" means no longer making myself available to answer what questions I can of the newly-diagnosed or to comfort the people I meet who are in treatment, then I'm certainly not ready to do that. Also, my talents and abilities are needed by the BCRC to make this year's Brunch as much of a success (if not more) than it was last year. The self-esteem and confidence I gained last year from tackling and conquering those checkout logistics was something I really needed at the time. If "moving on" means walking away from that, then I'm not ready to go there.
At the same time, I would argue that I'm not wallowing in the fact that I've had to deal with cancer. (Notice how I'm no longer referring to it as "breast cancer" here? That's because I feel an attachment to the cancer community in general and not just the "breast cancer" or "younger-woman-diagnosed-with-breast-cancer community.") My husband will back me up on the part about not wallowing.
I'm haunted more by surviving a certain car accident than by surviving breast cancer.
So I drove away from that encounter thinking about what it means to balance a past trauma with life after the trauma. I thought about how I evaluate the levels of participation I'm willing to give. Anything that results in my missing dinner, bath time or bed time with my son is something I take seriously. I opted out of working on the Graphic fundraiser for the BCRC and the Pink Ribbon Cowgirls this year because it meant too many evenings away from my little boy. I plan to chair the same committee for the Champagne Brunch because they don't have a bunch of evening meetings. Also, the Brunch is more my style and pace. And by knowing my threshold for throwing myself into a volunteer project and not burning out, I know I can contribute something that matters and continue to have fun doing it, which means I'll probably continue to do it for years to come. We'll see. Any organization that relies on volunteers benefits best from volunteers who aren't flaky. I'm striving to commit to only those things with which I can follow through and not sacrifice my family or my sanity.
I also concluded through these musings that I am constantly evaluating and re-evaluating the cost of different projects to my family. My husband and my son are everything to me. Everything else is secondary. So I gauge my leisure and work commitments on how my family will be affected, and I extend myself or pull back based on whatever is going on at the time. My overall goal is to strike a balance.
I think balance is like steering a sailboat. You'll go off course eventually if you steer in a straight line. Instead, you must tack left and right and adjust constantly for shifting factors such as wind and waves. Over time your navigation leads you to a goal.
"Just get over it." Cancer is never far away from my thoughts. The fear of recurrence is something I struggle to control. I can't let it overwhelm me or else I won't be able to function. I shouldn't eliminate it or else I won't monitor my body for early warning signs as I should. So I have to strike a balance with this fear. I work to keep it within reasonable bounds and to not let it control me. It's kind of like the fear you feel driving in the dark during rain on an unfamiliar road. You should be cautious and aware, but not so uptight that you endanger others by overreacting.
Fear of recurrence helps me to make some decisions. For example, working late once in a while is fine. But if I worked late on a regular basis, keeping me away from my son, and if I were diagnosed with cancer again, would I look back over the last six months and regret how I had spent that time? The answer is "yes," so I don't work late very often. My boss doesn't always appreciate that attitude, but my son means more to me than my work.
For a couple of weeks after this conversation with the well-meaning poet, I found myself fuming all over again each time I thought about it. I don't believe that I have failed to "move on." I'm defining my life in the "new normal" the best way I know how, and I'm doing just fine.
I suppose that life will give us recurring opportunities to sample the ignorance or free advice from others and choose to accept, defy, or ignore them. The hard part is appreciating the intended kindness while not following through with the urge to tell people off or smack 'em up side the head.
Next - 63 Anti-Genetic Discrimination Bill
Previous - 61 Poetry and Other Things in 2007
I know that during the last few weeks of chemotherapy when I was truly sick of feeling like crap constantly and thinking how my initial diagnosis didn't scare me as much as it should have because I didn't know just how awful things would get, I was also dying to know from someone who'd been there how you live your life after treatment. I remember aching to ask a particular Pink Ribbon Cowgirl how she managed her fear of recurrence and the words never left my mouth. I was too timid to ask.
How do you define the "new normal" and how do you go back to living your life after cancer? Different people will have different answers. In case my answers are helpful to another fearful person, I've decided to record a few thoughts in the blog.
Part of taking care of myself is to set aside some time to do the things I enjoy - things that nurture the soul. So I arrange get-togethers with friends, plan the occasional surprise for my family, and I write poetry. Lately at work I have been designing databases. That may not sound like fun to most people, but it is a fantastic combination of left-brain logic mixed with right-brain creativity as far as I'm concerned, and I've had a ball this last week doing it.
I took time off work in April 2008 to attend the Austin International Poetry Festival (AIPF). My Radiation on a Rainy Day poem was accepted into this year's AIPF anthology. That was an honor. By taking time off from work to attend festival events on a Friday, I fulfilled a desire that I've denied myself in previous years. I also got to attend a poetry workshop that encouraged me to works towards writing more and performing more. When my son gets a little older I will seriously consider the performance part. Many thanks to Michael Guinn for driving down from Ft. Worth and hosting this workshop. The man is an AWESOME performer.
A fellow workshop attendee took me aside after the workshop. She, like me, had had a poem published in the anthology and we both read our anthology poems during the workshop. Her husband had gone through two boughts of prostate cancer so she could closely identify with the emotions expressed in my radiation poem. Michael Guinn had asked each of us during the workshop to talk briefly about our histories of writing poetry so I had mentioned that Radiation on a Rainy Day had come about after I attended a workshop he hosted on performing poetry last year.
His workshop in 2007 had had people write for 10 minutes about the first thing that came to mind. The first words of the workshop poem were, "I never knew I was so angry." As I worked on the poem, I realized that I had residual anger issues from having had cancer and from having been traumatized by the cancer treatments. Writing that poem helped me face those issues and heal, and then I reached a new place of balance from which Radiation on a Rainy Day was born.
The Breast Cancer Coalition of Rochester, New York contacted me shortly after the poem appeared in Women & Cancer magazine and they asked my permission to reprint the poem in their quarterly newsletter. Talk about feeling honored! Since my radiation poem has received more attention than anything I've written to date, I wanted the teacher who had inspired me to know what his workshop last year helped spark.
So this woman who has cared for her husband during prostate cancer and its recurrence approaches me and tries to pass along advice she considers to be a kindness. "You have to move on," she tells me. I started to explain to her that I have moved on, I think. I may have written a poem about radiation therapy, but it doesn't mean I'm still dwelling on the emotions and struggles of that point in my life. But there is too much to say in a paragraph or less to this stranger to properly defend this point of view.
As I briefly wonder if my participation in the Breast Cancer Resource Center's Champagne Brunch was some sort of subconscious attempt at not letting go of all the attention I got during the treatment days, she takes advantage of my silence to tell me that she's trying to help me by passing along this advice - her husband's conclusion. He apparently spent some time helping other newly diagnosed people and volunteering for the cause through some means or other, and after a while he decided that his life no longer revolved around cancer. It sounded to me that his way of putting his cancer battle behind him was to stop doing those things. He stopped being available to help others.
Hmmmm...
You know? Each person has to do what feels right to him or her given the circumstances. Some people throw themselves into anti-cancer causes and they make fighting cancer their new life's work. Some people hide their diagnosis, treatment, and cancer history from everyone they can and very few people know it ever happened. Some people volunteer heavily for a while and then burn out. The details are as different as the individuals, but we all have to figure out what we want and what we can handle.
I'm trying to balance and integrate my cancer experience with my life. If "moving on" means pretending it never happened, then I'm not ready to do that. If "moving on" means never writing poetry or essays that refer to cancer experiences or draw from the drama of that time, then I'm not ready to do that. If "moving on" means no longer making myself available to answer what questions I can of the newly-diagnosed or to comfort the people I meet who are in treatment, then I'm certainly not ready to do that. Also, my talents and abilities are needed by the BCRC to make this year's Brunch as much of a success (if not more) than it was last year. The self-esteem and confidence I gained last year from tackling and conquering those checkout logistics was something I really needed at the time. If "moving on" means walking away from that, then I'm not ready to go there.
At the same time, I would argue that I'm not wallowing in the fact that I've had to deal with cancer. (Notice how I'm no longer referring to it as "breast cancer" here? That's because I feel an attachment to the cancer community in general and not just the "breast cancer" or "younger-woman-diagnosed-with-breast-cancer community.") My husband will back me up on the part about not wallowing.
I'm haunted more by surviving a certain car accident than by surviving breast cancer.
So I drove away from that encounter thinking about what it means to balance a past trauma with life after the trauma. I thought about how I evaluate the levels of participation I'm willing to give. Anything that results in my missing dinner, bath time or bed time with my son is something I take seriously. I opted out of working on the Graphic fundraiser for the BCRC and the Pink Ribbon Cowgirls this year because it meant too many evenings away from my little boy. I plan to chair the same committee for the Champagne Brunch because they don't have a bunch of evening meetings. Also, the Brunch is more my style and pace. And by knowing my threshold for throwing myself into a volunteer project and not burning out, I know I can contribute something that matters and continue to have fun doing it, which means I'll probably continue to do it for years to come. We'll see. Any organization that relies on volunteers benefits best from volunteers who aren't flaky. I'm striving to commit to only those things with which I can follow through and not sacrifice my family or my sanity.
I also concluded through these musings that I am constantly evaluating and re-evaluating the cost of different projects to my family. My husband and my son are everything to me. Everything else is secondary. So I gauge my leisure and work commitments on how my family will be affected, and I extend myself or pull back based on whatever is going on at the time. My overall goal is to strike a balance.
I think balance is like steering a sailboat. You'll go off course eventually if you steer in a straight line. Instead, you must tack left and right and adjust constantly for shifting factors such as wind and waves. Over time your navigation leads you to a goal.
"Just get over it." Cancer is never far away from my thoughts. The fear of recurrence is something I struggle to control. I can't let it overwhelm me or else I won't be able to function. I shouldn't eliminate it or else I won't monitor my body for early warning signs as I should. So I have to strike a balance with this fear. I work to keep it within reasonable bounds and to not let it control me. It's kind of like the fear you feel driving in the dark during rain on an unfamiliar road. You should be cautious and aware, but not so uptight that you endanger others by overreacting.
Fear of recurrence helps me to make some decisions. For example, working late once in a while is fine. But if I worked late on a regular basis, keeping me away from my son, and if I were diagnosed with cancer again, would I look back over the last six months and regret how I had spent that time? The answer is "yes," so I don't work late very often. My boss doesn't always appreciate that attitude, but my son means more to me than my work.
For a couple of weeks after this conversation with the well-meaning poet, I found myself fuming all over again each time I thought about it. I don't believe that I have failed to "move on." I'm defining my life in the "new normal" the best way I know how, and I'm doing just fine.
I suppose that life will give us recurring opportunities to sample the ignorance or free advice from others and choose to accept, defy, or ignore them. The hard part is appreciating the intended kindness while not following through with the urge to tell people off or smack 'em up side the head.
Next - 63 Anti-Genetic Discrimination Bill
Previous - 61 Poetry and Other Things in 2007
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