Wednesday, August 19, 2015
Stupid Dumb Breast Cancer: Angelo Merendino
Stupid Dumb Breast Cancer: Angelo Merendino: Angelo Merendino Check these amazing pictures out. I want to honor Jen this year at race for the cure!
Monday, August 17, 2015
Double mastectomy or not?
The latest fashionable breast cancer decision is to have a double mastectomy in a preventive effort. Well there was a super secret twenty year study going on about the benefits of that very same surgery.
Basically what it boils down to is that unless you have the BRCA gene or other hereditary breast cancer, there is no benefit to removing a healthy breast. And the potential complications of the surgery can have a negative effect on the patient.
"Tuttle and his coauthors used published data to develop a model for predicting survival rates over 20 years for women diagnosed with stage I or II cancer at age 40, 50 or 60.
According to the existing data, more than 98 percent of women diagnosed with stage I breast cancer will survive at least 10 years, and 90 percent will survive for 20 years. For stage II breast cancer, 77 percent survive for at least 10 years and 58 percent survive at least 20 years.
For all age groups and tumor types in the study, the risk of developing cancer in the opposite breast after diagnosis was less than one percent each year, the authors wrote in the Journal of the National Cancer Institute."
So this study shows that while some women may want an elective double mastectomy, there is no benefit. I was also pleased to see the ten and twenty year survival rates (which are difficult to find) for stage I and II breast cancer. I am moving away from the five year time frame and starting to think about the ten year time frame and longer. And no I didn't even consider a single or double mastectomy.
Basically what it boils down to is that unless you have the BRCA gene or other hereditary breast cancer, there is no benefit to removing a healthy breast. And the potential complications of the surgery can have a negative effect on the patient.
"Tuttle and his coauthors used published data to develop a model for predicting survival rates over 20 years for women diagnosed with stage I or II cancer at age 40, 50 or 60.
According to the existing data, more than 98 percent of women diagnosed with stage I breast cancer will survive at least 10 years, and 90 percent will survive for 20 years. For stage II breast cancer, 77 percent survive for at least 10 years and 58 percent survive at least 20 years.
For all age groups and tumor types in the study, the risk of developing cancer in the opposite breast after diagnosis was less than one percent each year, the authors wrote in the Journal of the National Cancer Institute."
So this study shows that while some women may want an elective double mastectomy, there is no benefit. I was also pleased to see the ten and twenty year survival rates (which are difficult to find) for stage I and II breast cancer. I am moving away from the five year time frame and starting to think about the ten year time frame and longer. And no I didn't even consider a single or double mastectomy.
Sunday, August 16, 2015
just another conversation
I've started to record bits of conversation that occur at our house. This one took place yesterday morning betweem my spouse and me.
T.: "Can you send a Facebook message to someone who's not your Friend on Facebook?"
Me: "You can. I get emails all the time from strange men saying they can't live without me."
T.: "You do?"
Me: "Yes, sometimes they say they saw my photo and that they can't stop thinking about me."
T.: "Wow."
Me: "I especially wonder about those because my profile photo is of the dog."
(Conversation interrupted by laughter)
Me: "I think they might be spam."
T.: "In those cases, I hope they are, because the alternative is disturbing."
Why do they do that?
I have a policy with myself for when to call my back pain doctor. When I get to the point of needing 2-3 breakthrough pain pills to get through the day, its time to make the call for an appointment. I have been at that point for a while and got in to see him yesterday afternoon.
My points of discussion with him were two: My right SI joint is in serious need of having its nerves killed off and my varying total back pain needs to be discussed. We don't always change my pain meds at a single appointment, we often discuss them over a few appointments before making changes.
My right SI joint (which is the long seam joint down the side of your tailbone if you are wondering) has been giving me problems for months. We have had the treatment discussion before but previously we have focused on other pain areas.
Yesterday afternoon, he had me lie on the exam table and he moved my legs around and pressed on my hip. That hurt. Then he had me lie on my side and he pressed right on the SI joint. That was like a live wire running through me. I had to catch my breath after.
I think he realized how much it hurt and said he would send the nurse in to schedule my treatment. It took a while for me to recover from the amount of pain. I know he had to make sure he knew where the pain was coming from before heated needles to kill the nerves - because you really don't want to kill the wrong nerves.... But, yowza!
October 25 is the date for the treatment... It will be three years from the last one, which was the second one on the same place. These treatments (radiofrequency) can be repeated over and over again and each time the nerves come back, it takes longer and longer and they are weaker and weaker so the pain levels are less and less.
On a side note, my pain management doctor says I can actually take up to 8 break through pain pills a day and he considers 2-3 a day a very low dose. But my rheumatologist tells me that from her point of view, 3 should be the maximum because of convulsions. Its the different perspective from the two doctors that gets damn confusing.
My points of discussion with him were two: My right SI joint is in serious need of having its nerves killed off and my varying total back pain needs to be discussed. We don't always change my pain meds at a single appointment, we often discuss them over a few appointments before making changes.
My right SI joint (which is the long seam joint down the side of your tailbone if you are wondering) has been giving me problems for months. We have had the treatment discussion before but previously we have focused on other pain areas.
Yesterday afternoon, he had me lie on the exam table and he moved my legs around and pressed on my hip. That hurt. Then he had me lie on my side and he pressed right on the SI joint. That was like a live wire running through me. I had to catch my breath after.
I think he realized how much it hurt and said he would send the nurse in to schedule my treatment. It took a while for me to recover from the amount of pain. I know he had to make sure he knew where the pain was coming from before heated needles to kill the nerves - because you really don't want to kill the wrong nerves.... But, yowza!
October 25 is the date for the treatment... It will be three years from the last one, which was the second one on the same place. These treatments (radiofrequency) can be repeated over and over again and each time the nerves come back, it takes longer and longer and they are weaker and weaker so the pain levels are less and less.
On a side note, my pain management doctor says I can actually take up to 8 break through pain pills a day and he considers 2-3 a day a very low dose. But my rheumatologist tells me that from her point of view, 3 should be the maximum because of convulsions. Its the different perspective from the two doctors that gets damn confusing.
down-time at the ottawa folk festival
My spouse and youngest son and I went to the Ottawa Folk Festival this past week end. I love these shots T. took of D. and I chilling out between the afternoon and evening programming.
I didn't have any pockets, so I resorted to an old habit of sticking my cable needle in my cleavage. Except, I don't really have cleavage any more. The pointy cable needle kept falling over and I had to keep reaching into my bra to fish it out.
This amused me.
The scarf I'm making has one asymmetrical cable.
This amuses me, too.
Pissed but still awesome
My cousin called me today because her friend got the diagnosis of a life time, breast cancer! She asked if I would contact her, of course anything to help a sister out. BUT it pissed me off. It proved the 1 out of 8 woman fact, the every 2 minutes someone is diagnosed, the 100 lives are claimed every day to breast cancer, but we do not have to accept this. All of us can do something, I do not mean make a meal (which is helpful) or send flowers (which brighten a day) or buy shoes (which is AWESOME) but be active before that call is you or someone close. I have so many events planned you will have no excuse to not be active! What is it going to take to get you pissed off enough to join me? I am so pissed off that my boobs are gone and I have these foreign plastic bags in there, that I am still in pain, that I have these ugly scars. I am pissed my summer was so stressful, that I couldn't wear half my bathing suits, that I can not exercise the way I want. I am pissed off big time and that can only mean one thing. I am going to be a active in reducing those numbers. I am going to need all of you to support me on this. I will never be without breast cancer, I have scars forever and pills to take and more doctor appointments. So, in order to shove it back to stupid dumb breast cancer I have to take it down. I am pissed to that another beautiful sweet mother/woman/friend/daughter has to deal with this lumpy road. Be pissed with me and join me to eradicate breast cancer. I mean what else do you have to do??? Please pass my blog along to any survivor, fighter that you know to show that stupid dumb breast cancer will did not take this woman down, it pissed her off!
Check this out, my friend Shari's blog is #1 and Angelo is on there too. This is awerness!!!
http://www.healthline.com/health-slideshow/best-breast-cancer-blogs?fb_ref=.UBscGxPFh9k.like&fb_source=other_multiline
Saturday, August 15, 2015
Back to Reality
Back to reality:
Stranger yet was the juxtaposition of these events to an article about Kris Carr in The New York Times Sunday Magazine, "Kris Carr: Crazy Sexy Entrepreneur." Many of you are fans of hers, and I appreciate that. My concern: the grey line that connects newly emerging cancer celebrities to the Oprah and Dr. Oz powerhouse, and people accepting their utterings as gospel. That's alarms me. But as it's said, sex sells.
She beat cancer not because of who she is but because of the kind of cancer she had. What Kris Carr is famous for is writing about a cancer that -- most fortunately - has not taken root. No treatment. No surgery. No chemo. No radiation. But one woman's green drinks and enemas does not constitute evidence-based medicine. It is about marketing, her shrewd ability to fill a niche for a new cancer vocabulary, and our culture's voracious appetite for a fresh face.
Beyond all though is the nature of post 9/11 empowerment and our cultural need to believe that by golly, we can take control of any and everything with the right amount of vegetables, mantra humming, and "phabulouness."
But it isn't reality. There are many things we can not control. Cancer that is biologically aggressive in nature is one of them. And I find this kind of voodoo tremendously insulting to the millions of people worldwide who are not as fortunate to appear on the other side of the cancer treatment stream with limbs, psyche and mind intact.
Of all the cancer stories available that the Times profiled this is a sad reflection on what is perceived as "fit to print" about cancer. This story doesn't accurately represent people with cancer. It's more like a cartoon, and a bad one at that.
Houston weather today: Highs around 101. Mostly sunny, turning partly cloudy. bit.ly/c7r3wv
Travel is absolutely a fabulous gift. The return isn't always, as you can see by our forecast.
The bigger shock, though, has been the relentless march of cancer across the lives of people I care about. In the short time I was gone two women died of cancer way, way before their time; two more were recently diagnosed, and another friend had to have three separate surgeries to obtain clear margins in her early stage breast cancer.
She beat cancer not because of who she is but because of the kind of cancer she had. What Kris Carr is famous for is writing about a cancer that -- most fortunately - has not taken root. No treatment. No surgery. No chemo. No radiation. But one woman's green drinks and enemas does not constitute evidence-based medicine. It is about marketing, her shrewd ability to fill a niche for a new cancer vocabulary, and our culture's voracious appetite for a fresh face.
Beyond all though is the nature of post 9/11 empowerment and our cultural need to believe that by golly, we can take control of any and everything with the right amount of vegetables, mantra humming, and "phabulouness."
But it isn't reality. There are many things we can not control. Cancer that is biologically aggressive in nature is one of them. And I find this kind of voodoo tremendously insulting to the millions of people worldwide who are not as fortunate to appear on the other side of the cancer treatment stream with limbs, psyche and mind intact.
Of all the cancer stories available that the Times profiled this is a sad reflection on what is perceived as "fit to print" about cancer. This story doesn't accurately represent people with cancer. It's more like a cartoon, and a bad one at that.
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