Am I the only one on the planet who thinks we do not need more awareness of different cancer types? I mean yes there are some really obscure ones that need awareness and more treatment as well as metastatic cancer definitely needs more options. But really, do we really need an unending calendar of fashion shows, races, walks, and other events?
I may be cynical but I think most of us are too aware of cancer these days. Or is it just me because it has been part of my life for so long?
Showing posts with label events. Show all posts
Showing posts with label events. Show all posts
Monday, August 31, 2015
Saturday, March 29, 2014
National Coalition for Cancer Survivorship
There is a national group - National Coalition for Cancer Survivorship (NCCS) - which focuses on advocacy for people living with cancer. I detest the word survivor but I'm okay with it here. Their website url tells it all - www.canceradvocacy.org. They advocate on cancer issues.
Are you familiar with the oral parity issue? That's the one where cancer treatment given as an infusion is paid for by your health insurance which covers most of it. But if the patient is switched to a pill form of treatment, it is covered as part of the pharmacy benefit - usually as a branded premium medication which is covered by a huge copay. The oral parity bill is hoping to change this so that the coverage is the same.
They had a a recent event called "Putting the Patient First" which focused on more issues of payment reform. They also have all sorts of resources on their website and they talk about a lot of other legislative changes in progress. And they have local chapters.
I am a volunteer with the New England Coalition for Cancer Survivorship - or NECCS. Today is their annual luncheon where I helped get together the vendors for a small craft fair. I will bring my checkbook...
As part of the luncheon they award some people who have gone above and beyond. I nominated my oncologist for her cookbook for cancer patients so I am also introducing her.
If you are someone living with cancer and are looking to help in some way, the NCCS is a great way to help. I do not do as much on the advocacy side myself but am happy to help with their events and in other ways locally. Every little bit helps.
Are you familiar with the oral parity issue? That's the one where cancer treatment given as an infusion is paid for by your health insurance which covers most of it. But if the patient is switched to a pill form of treatment, it is covered as part of the pharmacy benefit - usually as a branded premium medication which is covered by a huge copay. The oral parity bill is hoping to change this so that the coverage is the same.
They had a a recent event called "Putting the Patient First" which focused on more issues of payment reform. They also have all sorts of resources on their website and they talk about a lot of other legislative changes in progress. And they have local chapters.
I am a volunteer with the New England Coalition for Cancer Survivorship - or NECCS. Today is their annual luncheon where I helped get together the vendors for a small craft fair. I will bring my checkbook...
As part of the luncheon they award some people who have gone above and beyond. I nominated my oncologist for her cookbook for cancer patients so I am also introducing her.
If you are someone living with cancer and are looking to help in some way, the NCCS is a great way to help. I do not do as much on the advocacy side myself but am happy to help with their events and in other ways locally. Every little bit helps.
Thursday, February 27, 2014
When do events take over their causes?
Here's a poser for early in the day: when do events take over their causes/ailments? Allow me to clarify a few things:
I think there are two kinds of events:
In my mind I am thinking of events like the Pan Mass Challenge which is run by the Dana Farber Cancer Institute and all funds raised are used to fund cancer research and the organized Komen Three Day, Avon Two Day, American Diabetes Association's Rides and all those other big events where no one knows each other and the recipients are far away and unknown. Does the hype and media pressure and obligations of the participants outweigh the cause itself?
I often donate to participants in these events because I know the pressure they are under to raise funds. But I also give to the local events because I care. Does the event take over the cause because of the disconnect between the participant and the recipient when the media and hype set in? When does money and pressure supersede the cause?
Finally, am I making sense?
I think there are two kinds of events:
- The local event - a fundraiser for the family of someone with cancer or another ailment for example or for a local charity. The events are run by the people who know the family/organization and are close to them. The participants are mostly their friends with a few others thrown in. The amounts given are dug from deep down in their pockets with the concern for the monthly budget and mortgage payment. Every cent raised is handed over to a happy individual or family who may or may not even have known it was happening. Afterwards the recipient is amazed at the generosity of others and so grateful or the organization is able to continue to help others in the community.
- The other kinds of events come with media and hype - big fancy commercials and slick ads - to show up many millions are touched by the disease/ailment/whatever each year and how everything you can do to help this wonderful worthy cause is so important, blah, blah, blah. Your donation/support/participation will help so many other people. The recipients don't really know who raised the money and the participants don't know the recipients. They are just running/riding/'sport'-ing their way to help a worthy cause because they may know someone who might have had the ailment. And they are required to raise a substantial amount of money and provide a credit card number to bill the amounts not raised. They ask their friends and families donations as they feel the pressure to do so.
In my mind I am thinking of events like the Pan Mass Challenge which is run by the Dana Farber Cancer Institute and all funds raised are used to fund cancer research and the organized Komen Three Day, Avon Two Day, American Diabetes Association's Rides and all those other big events where no one knows each other and the recipients are far away and unknown. Does the hype and media pressure and obligations of the participants outweigh the cause itself?
I often donate to participants in these events because I know the pressure they are under to raise funds. But I also give to the local events because I care. Does the event take over the cause because of the disconnect between the participant and the recipient when the media and hype set in? When does money and pressure supersede the cause?
Finally, am I making sense?
Saturday, October 12, 2013
World Arthritis Day
Every year on October 12 is World Arthritis Day. I did not know this. I think last year on October 12 I was still waiting for my final lab reports back. This year I know a lot more about arthritis. More than I ever wanted to know. I am getting more specialists to deal with my arthritis as well. I feel (as) healthy (as a horse on the way to the glue factory) someetimes.
Anyway, I think I am supposed to wear blue in honor of World Arthritis Day- another reason not to wear pink. If I was really good I would have planned to attend an event or even planned and organized a WAD event. I'm just not that good about these things.
The more ailments I develop the more days and months I get to be distracted by. I will say I can't remember most of them from one year to the next. But I try.
Tomorrow, October 13, is metastatic breast cancer day. Please put it on your calendars.
Anyway, I think I am supposed to wear blue in honor of World Arthritis Day- another reason not to wear pink. If I was really good I would have planned to attend an event or even planned and organized a WAD event. I'm just not that good about these things.
The more ailments I develop the more days and months I get to be distracted by. I will say I can't remember most of them from one year to the next. But I try.
Tomorrow, October 13, is metastatic breast cancer day. Please put it on your calendars.
Wednesday, June 5, 2013
We knew this would happen
Not to make light of an other's misfortunes but I think that we knew this would happen. Komen (for the Cure) has clearly been on a downturn since the mishandling of the Planned Parenthood epic in 2012. One of their main fundraising efforts has been their three day walks. There used to be 14 around the country. Starting in 2014, there will be 7.
The Three Days are cancelled in Boston, Arizona, Cleveland, Chicago, Tampa, San Francisco, and Washington, DC. This will leave only Atlanta, Dallas/Ft Worth, Michigan, San Diego, Twin Cities, and Seattle.
And example of their recent numbers is here:
"On May 11, thousands of breast cancer survivors and their supporters gathered on the Mall in Washington, D.C., for the annual Susan G. Komen Global Race for the Cure, but attendance at the charity’s signature fund-raising event was down for a second consecutive year.
About 21,000 people registered for that race, down from 27,000 last year and nearly 40,000 in 2011. Fund-raising has also been down: The race generated $5 million in donations in 2011, according to Komen spokeswoman Andrea Rader, but generated $2 million last year."
What does this tell us? Large non profits are increasingly scrutinized by the American public on many levels - what they do with their money, what they support, and the amount paid to their executives.
If I was a leader at Komen I would clearly be taking steps to save the organization as they have clearly been forced to cut their fundraising activities in half. I hope they see what last year's mistake has cost them.
The Three Days are cancelled in Boston, Arizona, Cleveland, Chicago, Tampa, San Francisco, and Washington, DC. This will leave only Atlanta, Dallas/Ft Worth, Michigan, San Diego, Twin Cities, and Seattle.
And example of their recent numbers is here:
"On May 11, thousands of breast cancer survivors and their supporters gathered on the Mall in Washington, D.C., for the annual Susan G. Komen Global Race for the Cure, but attendance at the charity’s signature fund-raising event was down for a second consecutive year.
About 21,000 people registered for that race, down from 27,000 last year and nearly 40,000 in 2011. Fund-raising has also been down: The race generated $5 million in donations in 2011, according to Komen spokeswoman Andrea Rader, but generated $2 million last year."
What does this tell us? Large non profits are increasingly scrutinized by the American public on many levels - what they do with their money, what they support, and the amount paid to their executives.
If I was a leader at Komen I would clearly be taking steps to save the organization as they have clearly been forced to cut their fundraising activities in half. I hope they see what last year's mistake has cost them.
Friday, March 8, 2013
I never understood this
Clearly its pinkification but I do not understand the commercials for the breast cancer walks. The one where the woman is saying "Three days of walking to give a breast cancer patient a lifetime". What? I mean there is a significant disconnect here. This commercial just ran and it irritates me to no end every time I hear that woman saying the same thing.
Someone walking for days does nothing for me. How does the walk or anyone's walking give a breast cancer patient a lifetime? Its not the walk that Komen or Avon or who ever is holding it cares about, its the money they raise.
They require the walkers to raise anywhere between $1000 - $3000 or more each and require them to provide a credit card number that they can charge the amount not raised. They pressure these walkers, or runners, or riders or whatever to raise the money. How does that pressure help any cancer patient?
No help to me. My sister and a friend did the breast cancer walk a few years ago. I have friends that do the walks annually and enjoy the participation and the giving back to the community. More power to them. It can be a worthy effort but you can't tell me that walking/running/riding gives a cancer patient anything.
The effort results in funds raised for awareness (as if we need more pink) and research (we hope).
Someone walking for days does nothing for me. How does the walk or anyone's walking give a breast cancer patient a lifetime? Its not the walk that Komen or Avon or who ever is holding it cares about, its the money they raise.
They require the walkers to raise anywhere between $1000 - $3000 or more each and require them to provide a credit card number that they can charge the amount not raised. They pressure these walkers, or runners, or riders or whatever to raise the money. How does that pressure help any cancer patient?
No help to me. My sister and a friend did the breast cancer walk a few years ago. I have friends that do the walks annually and enjoy the participation and the giving back to the community. More power to them. It can be a worthy effort but you can't tell me that walking/running/riding gives a cancer patient anything.
The effort results in funds raised for awareness (as if we need more pink) and research (we hope).
Monday, March 12, 2012
All those cancer fundraisers
How many of those cancer fundraisers have you been to? This year? I mean the ones where someone is raising money to pay for someone's medical bills, or the ones where someone is raising money to participate in a cancer run/walk/ride. Many organizations have these events to raise money and require all participants to raise a substantial amount - often a few thousand dollars - which leads the participants to come up with creative ways to come up with the amount. The organizations often require participants to provide a credit card which they will charge 30 days after the event for any amount not raised.
People do these for a variety of reasons - maybe they have had cancer or maybe they know someone who has had cancer. I have been to fundraising dinners, lobster/clam bakes, where I work we have a costumed bowling night each year and many more. I send checks, I donate on line, I help how I can.
This weekend I went to a different one - a women's hockey tournament. There are two local women who started this to raise money to participate in a breast cancer walk. They started out with a few teams on a Saturday afternoon. This year, their fifth, they had a Friday night family fun tournament where eight co-ed teams of family members competed in four games. On Saturday they had eight more games with 16 teams of women hockey players.
In addition to having hockey games, they have raffles to raise additional funds. And they don't keep all the money for their walk donation, they donate a substantial amount to several other community organizations - a cancer support group organization (where I work), a center for bereaved children, scholarships for local high school students who lost parents to cancer, and the Jimmy Fund. I have no idea what they raised this year, but last year they raised $17,000.
This is an event which is all about altruistic efforts to help others. The people who run this should be lauded for their efforts. There is too much in this world where people do things for themselves but making an effort not only to help a cause but to help other organizations as well. The world would be a nicer place with more people making this kind of effort to help others.
People do these for a variety of reasons - maybe they have had cancer or maybe they know someone who has had cancer. I have been to fundraising dinners, lobster/clam bakes, where I work we have a costumed bowling night each year and many more. I send checks, I donate on line, I help how I can.
This weekend I went to a different one - a women's hockey tournament. There are two local women who started this to raise money to participate in a breast cancer walk. They started out with a few teams on a Saturday afternoon. This year, their fifth, they had a Friday night family fun tournament where eight co-ed teams of family members competed in four games. On Saturday they had eight more games with 16 teams of women hockey players.
In addition to having hockey games, they have raffles to raise additional funds. And they don't keep all the money for their walk donation, they donate a substantial amount to several other community organizations - a cancer support group organization (where I work), a center for bereaved children, scholarships for local high school students who lost parents to cancer, and the Jimmy Fund. I have no idea what they raised this year, but last year they raised $17,000.
This is an event which is all about altruistic efforts to help others. The people who run this should be lauded for their efforts. There is too much in this world where people do things for themselves but making an effort not only to help a cause but to help other organizations as well. The world would be a nicer place with more people making this kind of effort to help others.
Saturday, October 22, 2011
Cancer treatment, cancer cure, and cancer cause
Yesterday I went to a free conference on the future of cancer care sponsored by the hospital I go to. I think I blogged about it before. But it was yesterday, I went and enjoyed it. I learned a lot. (And I learned I should not have sat in a crappy conference chair for four hours because it made my back hurt - a lot! But I took my drugs and suffered in silence until I got home and could whine to my husband and get an ice pack.)
The conference had three one hour sessions. You could choose your topics for the first two - I chose the breast cancer ones because I don't have lung or prostate, and the other stuff I didn't care to learn about.
The first one I went to was actually given by my surgeon and my medical oncologist. The surgeon talked about how breast cancer surgery has changed and is still changing. It is now focused on less is more. Studies have shown that in the majority of breast cancer diagnoses, a lumpectomy with radiation is just as good as a mastectomy. There is also concern for not taking the underarm lymph nodes even if there is cancer in 1-2 sentinel nodes. So now, even though I had one positive node, I probably would not have had the axillary node dissection which has since resulted in lymphedema. Also, decisions on chemotherapy and adjuvant (Tamoxifen/aromatase inhibitors)
The next session was by the head of the radiation oncology department. Times have changed here as well. Starting early this year, they are now offering partial breast radiation instead of full breast. The theory now is that they only need to target an area around the original tumor that is 1 cm around it. As opposed to radiating the whole breast which is more painful and takes weeks. The partial breast treatment can be completed in one week with twice a day treatment. This has been available in certain parts of the country in trials and not as a standard treatment until very recently. I probably would have had partial breast radiation as well. The decisions on partial or whole breast radiation are designed to involve the patient as much as possible. The focus is on educating the patient, getting them involved in decisions so they can regain some control over their bodies.
The final presentation was by Dr. Susan Love, who was very funny and provided a great presentation. She said the focus now is not as much as where the tumor is in your body - breast, lung, stomach - as much as its characteristics a/k/a hormone receptor status. Breast cancer is not the only kind of cancer that has hormone status.
In addition, she said there is now thought that cancer might be caused by a virus. A lot of research has been done over years and decades on finding a cure for cancer which we still don't have. But what if research changed and focused on finding the cause.
Using cervical cancer as an example, it has been found to be caused by the Human Papilloma Virus (HPV). Once it was found to be caused by a virus, a cure was developed. She is working on developing her Army of Women (www.armyofwomen.org) where she wants to have a million women and men to participate in surveys and studies that help figure out why some women and men get breast cancer and most don't. (Join if you haven't.) One of her theories is that if researchers had only focused on rats and mice in a lab, they never would have discovered HPV - rats and mice can't get the HUMAN Papilloma Virus because they aren't human....
Another take away from Dr Love is on prevention of breast and other cancers. The three key areas are:
Overall, I was very surprised to learn how much had changed and how much hasn't changed in the past four years. Cancer studies can take years or even decades to publish results as they often follow the participants health for a long time after. This can slow treatment changes. But change has happened.
One note on the conference is that conferences run by doctors and hospitals provide healthy food. I went and was craving a chocolate chip cookie. I figured they would have something close to that. I was wrong. They had yogurt, 'shooters' of nuts and dried fruit and cup up apples with peanut butter. After they had had cheese and crackers and veggies and dip. I saw some fried egg roll things being passed around but there wasn't a chocolate chip in sight. In my evaluation I asked that they repeat the conference annually. Maybe I'll email and request cookies for next year - cancer people need cookies and Dr Love said it wasn't what we eat as much as what we weigh and I do have occasionally cookie cravings even though I eat my vegetables.
The conference had three one hour sessions. You could choose your topics for the first two - I chose the breast cancer ones because I don't have lung or prostate, and the other stuff I didn't care to learn about.
The first one I went to was actually given by my surgeon and my medical oncologist. The surgeon talked about how breast cancer surgery has changed and is still changing. It is now focused on less is more. Studies have shown that in the majority of breast cancer diagnoses, a lumpectomy with radiation is just as good as a mastectomy. There is also concern for not taking the underarm lymph nodes even if there is cancer in 1-2 sentinel nodes. So now, even though I had one positive node, I probably would not have had the axillary node dissection which has since resulted in lymphedema. Also, decisions on chemotherapy and adjuvant (Tamoxifen/aromatase inhibitors)
The next session was by the head of the radiation oncology department. Times have changed here as well. Starting early this year, they are now offering partial breast radiation instead of full breast. The theory now is that they only need to target an area around the original tumor that is 1 cm around it. As opposed to radiating the whole breast which is more painful and takes weeks. The partial breast treatment can be completed in one week with twice a day treatment. This has been available in certain parts of the country in trials and not as a standard treatment until very recently. I probably would have had partial breast radiation as well. The decisions on partial or whole breast radiation are designed to involve the patient as much as possible. The focus is on educating the patient, getting them involved in decisions so they can regain some control over their bodies.
The final presentation was by Dr. Susan Love, who was very funny and provided a great presentation. She said the focus now is not as much as where the tumor is in your body - breast, lung, stomach - as much as its characteristics a/k/a hormone receptor status. Breast cancer is not the only kind of cancer that has hormone status.
In addition, she said there is now thought that cancer might be caused by a virus. A lot of research has been done over years and decades on finding a cure for cancer which we still don't have. But what if research changed and focused on finding the cause.
Using cervical cancer as an example, it has been found to be caused by the Human Papilloma Virus (HPV). Once it was found to be caused by a virus, a cure was developed. She is working on developing her Army of Women (www.armyofwomen.org) where she wants to have a million women and men to participate in surveys and studies that help figure out why some women and men get breast cancer and most don't. (Join if you haven't.) One of her theories is that if researchers had only focused on rats and mice in a lab, they never would have discovered HPV - rats and mice can't get the HUMAN Papilloma Virus because they aren't human....
Another take away from Dr Love is on prevention of breast and other cancers. The three key areas are:
- weight - not necessarily what you eat but what you weigh and not gaining weight.
- exercise - 3 hours each week of getting your pulse rate up.
- stress - we can't prevent stress but we can handle it better - this means therapists, talking, support groups, prayer, meditation or whatever works for you.
Overall, I was very surprised to learn how much had changed and how much hasn't changed in the past four years. Cancer studies can take years or even decades to publish results as they often follow the participants health for a long time after. This can slow treatment changes. But change has happened.
One note on the conference is that conferences run by doctors and hospitals provide healthy food. I went and was craving a chocolate chip cookie. I figured they would have something close to that. I was wrong. They had yogurt, 'shooters' of nuts and dried fruit and cup up apples with peanut butter. After they had had cheese and crackers and veggies and dip. I saw some fried egg roll things being passed around but there wasn't a chocolate chip in sight. In my evaluation I asked that they repeat the conference annually. Maybe I'll email and request cookies for next year - cancer people need cookies and Dr Love said it wasn't what we eat as much as what we weigh and I do have occasionally cookie cravings even though I eat my vegetables.
Monday, October 17, 2011
Cancer events
I have mixed opinions on cancer conferences or events. Yes you get to meet other lucky people with cancer and listen to perky speakers to try to provide an optimistic view on your cancer. I attend them but sometimes leave feeling I was either put on display (she is someone with cancer and has to wear a stupid tshirt, wrist band, pin or whatever that denotes you as a person with cancer, usually with the s-word title) or been seen as a marketing opportunity. And the ones which put the cancer people in a special group and are showing their support of them by segregating them and encouraging everyone to cheer them on, are the worst. I really hate those and attend as few of these as possible.
These groups have the best of attentions and assume all of us with cancer want to be special and applauded for our 'battles', 'fights', 'strength', 'courage' and all sorts of other little tags. But some of us don't want that special attention. If I am going to tell someone about my life with cancer, I am not going to do it with a label or as a group, I'll talk about it one on one. It is interesting, if I participate in these events as a volunteer as opposed to an attendee, I have complete strangers coming up to me and telling me their cancer story out of the blue. But that is them one on one, not as a group.
But Friday I am going to a cancer event. It is a free conference being sponsored by the hospital I go to. It will include a presentation by my surgeon and oncologist on new personalized treatment in breast cancer. And a keynote session by the one and only Dr. Susan Love. I am going as an attendee. I am not going as a patient. I am not going as a person with cancer. I am going with interest in learning the latest. I do not expect to be singled out as a person with cancer. I do expect to be asked if I am a patient at the sponsoring hospital, and since I already am, I expect no pressure.
These groups have the best of attentions and assume all of us with cancer want to be special and applauded for our 'battles', 'fights', 'strength', 'courage' and all sorts of other little tags. But some of us don't want that special attention. If I am going to tell someone about my life with cancer, I am not going to do it with a label or as a group, I'll talk about it one on one. It is interesting, if I participate in these events as a volunteer as opposed to an attendee, I have complete strangers coming up to me and telling me their cancer story out of the blue. But that is them one on one, not as a group.
But Friday I am going to a cancer event. It is a free conference being sponsored by the hospital I go to. It will include a presentation by my surgeon and oncologist on new personalized treatment in breast cancer. And a keynote session by the one and only Dr. Susan Love. I am going as an attendee. I am not going as a patient. I am not going as a person with cancer. I am going with interest in learning the latest. I do not expect to be singled out as a person with cancer. I do expect to be asked if I am a patient at the sponsoring hospital, and since I already am, I expect no pressure.
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