My story ran in other blogs as well this year.
First, there was Young Survival Coalition, which ran my story on their social media sites on October 13th, which is Metastatic Breast Cancer Awareness Day.
Metastatic From the Start, featured on METAvivor's blog
I was featured on Telling Knots, in a two-part entry: Part I and Part II
* * *
There were a number of good blog entries elsewhere on the web this month too.
Think Before You Pink
Pushing Up Daisies
Let's Stop 'Dumbing Down' Breast Cancer Awareness Campaigns
When TODAY Said I Was 'Not Bald Enough'
Why some women with breast cancer dread October
Attack of the Pinktober Sharks
A Day in the Life of a Stage IV Metastatic Breast Cancer Patient
Project Metastatic Breast Cancer
The Problem with National Breast Cancer Awareness Month
Journeying Beyond Breast Cancer - the MBC Edition
Living with Stage 4: The breast cancer no one understands
Having breast cancer means being ‘aware’ every day, not just in October
About Me
- Susanne
- Diagnosed at 39 with Stage IV IDC breast cancer, grade 2, metastatic to the liver, and ER/PR+ and Her2-negative.
Showing posts with label metavivor. Show all posts
Showing posts with label metavivor. Show all posts
Friday, October 31, 2014
Thursday, October 30, 2014
October 30: A Recap of the Month
There are a lot of good blog entries out there about metastatic breast cancer, but by far one of my favorites is What Have We Learned About Metastatic Breast Cancer, Charlie Brown? It's comprehensive and witty, and one line especially stands out to me.
This is where I am right now, trying to set the world on fire with advocacy and awareness. I hope I never lose my passion for speaking out and trying to get more funding for metastatic research. I hope that is my legacy, to set the world on fire.
So what have we learned this month?
30% of early stage breast cancers go on to become metastatic. Even Stage 0 is at risk. Once there is cancer in your body, you are at risk of developing metastasis. And there is no cure for metastatic breast cancer. Only treatments in hopes of prolonging your life. An additional 10% more are already metastatic from the time they're diagnosed. That means 40% of breast cancers are metastatic.
155,000 people in the USA are living with metastatic disease. The US cancer registry does NOT track breast cancer recurrence so there are no reliable numbers for how many new cases of metastasis get diagnosed each year.
40,000 people die from metastatic breast cancer in the USA annually. This number has not changed over the years. Despite all the early detection and awareness, the mortality rate of breast cancer has remained stable. We are no closer to a cure than we were 40 years ago.
Only 2% of the funding for breast cancer goes to metastatic research. All the rest goes to early detection and awareness programs, and of course, company overheads and CEO pockets. If you want to make a difference with metastatic research, be sure to donate to a company where 100% of the donations go to metastatic breast cancer, like METAvivor.
The average length of survival for people diagnosed with metastatic breast cancer is 3 years.
The primary locations of breast cancer metastasis are: brain, bones, liver, lungs.
Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person's original diagnosis and successful treatment.
Women as young as 11 years of age, as well as men, can be diagnosed with metastatic breast cancer. There is no such thing as 'too young' or 'too male'.
Each woman and her prognosis is different. There are more than 18 different sub-types of breast cancer known to doctors, and each of those forms can have variations in things like hormone receptors and genetic factors.
Only 5% of women with breast cancer test positive for the BRCA 1 or 2 gene mutation.
Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life.
For more information, please read 13 Facts Everyone Should Know About Metastatic Breast Cancer and also the 2013 MBC Fact a Day - 31 Days in October.
Help us out in our fight for research and better treatments. Donate to METAvivor.
When I was first diagnosed with metastatic breast cancer, I wanted to set the world on fire.
This is where I am right now, trying to set the world on fire with advocacy and awareness. I hope I never lose my passion for speaking out and trying to get more funding for metastatic research. I hope that is my legacy, to set the world on fire.
So what have we learned this month?
30% of early stage breast cancers go on to become metastatic. Even Stage 0 is at risk. Once there is cancer in your body, you are at risk of developing metastasis. And there is no cure for metastatic breast cancer. Only treatments in hopes of prolonging your life. An additional 10% more are already metastatic from the time they're diagnosed. That means 40% of breast cancers are metastatic.
155,000 people in the USA are living with metastatic disease. The US cancer registry does NOT track breast cancer recurrence so there are no reliable numbers for how many new cases of metastasis get diagnosed each year.
40,000 people die from metastatic breast cancer in the USA annually. This number has not changed over the years. Despite all the early detection and awareness, the mortality rate of breast cancer has remained stable. We are no closer to a cure than we were 40 years ago.
Only 2% of the funding for breast cancer goes to metastatic research. All the rest goes to early detection and awareness programs, and of course, company overheads and CEO pockets. If you want to make a difference with metastatic research, be sure to donate to a company where 100% of the donations go to metastatic breast cancer, like METAvivor.
The average length of survival for people diagnosed with metastatic breast cancer is 3 years.
The primary locations of breast cancer metastasis are: brain, bones, liver, lungs.
Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person's original diagnosis and successful treatment.
Women as young as 11 years of age, as well as men, can be diagnosed with metastatic breast cancer. There is no such thing as 'too young' or 'too male'.
Each woman and her prognosis is different. There are more than 18 different sub-types of breast cancer known to doctors, and each of those forms can have variations in things like hormone receptors and genetic factors.
Only 5% of women with breast cancer test positive for the BRCA 1 or 2 gene mutation.
Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life.
For more information, please read 13 Facts Everyone Should Know About Metastatic Breast Cancer and also the 2013 MBC Fact a Day - 31 Days in October.
Help us out in our fight for research and better treatments. Donate to METAvivor.
Sunday, October 26, 2014
October 26: Guest Blogger Jennifer Eisenbart
A journalist for a newspaper in Wisconsin, Jennifer Eisenbart became active in spreading metastatic breast cancer awareness after it had an impact on her own life. Note: This column was originally printed by Southern Lakes Newspapers Oct. 2, 2014. It is reprinted with the permission of SLN, and should not be reprinted further without permission.
Additional note: Zanne is the nickname I go by with my friends. It's short for Susanne, using the Americanized spelling instead of the German spelling.
----
To me, breast cancer isn’t about statistics, or stages, about survival rates, or about October and the readiness of pink-ribbon items.
For me, breast cancer is about names.
Judy and Sharon – two friends who helped me through some of the toughest times of my life. Both died of metastatic breast cancer; one this year, the other more than 12 years ago.
Then there’s my friend Zanne, who I met writing fan fiction and who just got married this past weekend. Earlier this year, she was diagnosed with stage IV breast cancer.
As she constantly reminds me, in her case at stage IV, there is no cure. She’s fighting the cancer with everything she has, and there’s a good chance she will be around for a long time.
But there’s also the inevitable fact that the cancer cannot be eradicated, and that sooner or later, it will probably take her life. And the real kick in the pants? It won’t be the breast cancer that kills her then – not technically. It will be cancer that will have spread to her lungs, her lymph nodes, her brain, or even her bone marrow.
Cancer goes where it can to escape and survive.
I get behind and support breast cancer awareness in October – and the goals of finding a cure and stopping this disease from taking the lives of people I know. I remain optimistic that, perhaps in my lifetime, we will find a way to take breast cancer from the scary, incomprehensible secret to just another disease.
In the meantime, though, I want to spread the word about stage IV breast cancer – aka, metastatic breast cancer. According to Metavivor, a site dedicated to women suffering from stage IV breast cancer, here are the facts:
• Metastatic breast cancer receives approximately 2 percent of the funds raised for research.
• While only 6 to 10 percent of patients are diagnosed with stage IV breast cancer, 30 percent will eventually progress to stage IV.
• The primary focus of breast cancer research is prevention and early detection. That does nothing for the women diagnosed with stage IV – either in the beginning or later.
Metavivor is working hard to address that discrepancy. The organization says it believes that if 30 percent of the women with breast cancer are stage IV, then 30 percent of the funds that are raised should go to stage IV research.
It’s not a bad thought. Breast cancer in and of itself is a devastating disease. To free yourself of the disease and to have it reoccur – which means it has automatically progressed to stage IV – or to be diagnosed in that stage makes it worse. To know that so little effort is being put into stage IV research is infuriating.
I know what my friend Judy went through the final days of her life. I know, because I was there. I watched as she struggled to breathe, finally being put on a bi-pap machine and being placed on numerous drugs to stabilize her condition.
Those drugs were discontinued, the oxygen switched to a nasal cannula the morning she died. The reason was because there was no hope. The cancer had invaded her bones – destroyed her bone marrow. The reason she had so much trouble breathing was because her body wasn’t producing the red blood cells she so desperately needed.
Would Judy’s end have been any different with more research – with more funds put toward stopping cancer that has reached stage IV? I don’t know. Breast cancer isn’t alone in its stage IV challenge. Any form of cancer that reaches that point is difficult, if not impossible, to cure.
But increasing survival rates? Extending survival time? Eventually figuring out how to get rid of Stage IV cancer or keep it from reaching that stage? I think those are laudable goals. And I hope, for everyone who has reached that point, that cancer research can take that step.
Additional note: Zanne is the nickname I go by with my friends. It's short for Susanne, using the Americanized spelling instead of the German spelling.
----
To me, breast cancer isn’t about statistics, or stages, about survival rates, or about October and the readiness of pink-ribbon items.
For me, breast cancer is about names.
Judy and Sharon – two friends who helped me through some of the toughest times of my life. Both died of metastatic breast cancer; one this year, the other more than 12 years ago.
Then there’s my friend Zanne, who I met writing fan fiction and who just got married this past weekend. Earlier this year, she was diagnosed with stage IV breast cancer.
As she constantly reminds me, in her case at stage IV, there is no cure. She’s fighting the cancer with everything she has, and there’s a good chance she will be around for a long time.
But there’s also the inevitable fact that the cancer cannot be eradicated, and that sooner or later, it will probably take her life. And the real kick in the pants? It won’t be the breast cancer that kills her then – not technically. It will be cancer that will have spread to her lungs, her lymph nodes, her brain, or even her bone marrow.
Cancer goes where it can to escape and survive.
I get behind and support breast cancer awareness in October – and the goals of finding a cure and stopping this disease from taking the lives of people I know. I remain optimistic that, perhaps in my lifetime, we will find a way to take breast cancer from the scary, incomprehensible secret to just another disease.
In the meantime, though, I want to spread the word about stage IV breast cancer – aka, metastatic breast cancer. According to Metavivor, a site dedicated to women suffering from stage IV breast cancer, here are the facts:
• Metastatic breast cancer receives approximately 2 percent of the funds raised for research.
• While only 6 to 10 percent of patients are diagnosed with stage IV breast cancer, 30 percent will eventually progress to stage IV.
• The primary focus of breast cancer research is prevention and early detection. That does nothing for the women diagnosed with stage IV – either in the beginning or later.
Metavivor is working hard to address that discrepancy. The organization says it believes that if 30 percent of the women with breast cancer are stage IV, then 30 percent of the funds that are raised should go to stage IV research.
It’s not a bad thought. Breast cancer in and of itself is a devastating disease. To free yourself of the disease and to have it reoccur – which means it has automatically progressed to stage IV – or to be diagnosed in that stage makes it worse. To know that so little effort is being put into stage IV research is infuriating.
I know what my friend Judy went through the final days of her life. I know, because I was there. I watched as she struggled to breathe, finally being put on a bi-pap machine and being placed on numerous drugs to stabilize her condition.
Those drugs were discontinued, the oxygen switched to a nasal cannula the morning she died. The reason was because there was no hope. The cancer had invaded her bones – destroyed her bone marrow. The reason she had so much trouble breathing was because her body wasn’t producing the red blood cells she so desperately needed.
Would Judy’s end have been any different with more research – with more funds put toward stopping cancer that has reached stage IV? I don’t know. Breast cancer isn’t alone in its stage IV challenge. Any form of cancer that reaches that point is difficult, if not impossible, to cure.
But increasing survival rates? Extending survival time? Eventually figuring out how to get rid of Stage IV cancer or keep it from reaching that stage? I think those are laudable goals. And I hope, for everyone who has reached that point, that cancer research can take that step.
Wednesday, October 22, 2014
October 22: Interview with METAvivor's Lori Marx-Rubiner
I interviewed METAvivor president Lori Marx-Rubiner via email. These are her replies.
When were you first diagnosed with Breast Cancer?
Tuesday, February 4, 2002, after the worst weekend of my life. I had my biopsy on a Thursday and waited 5 LONG days to find out. I later discovered (while reading my chart) that the doctor knew that Friday but never told me. He was fired.
When were you diagnosed with Metastatic Breast Cancer?
Interesting that this date is less memorable – late August 2011, just about 2 months before my son’s bar mitzvah.
What were your thoughts upon hearing the metastatic diagnosis? Was your perception correct? What has changed since then?
Honestly – relief. I had spent nearly 2 years watching a tumor marker rise, with scan after scan showing nothing. Without corroborating evidence there was nothing to do but wait. So when it finally showed up I was relieved and ready to get back into treatment.
How did you first learn about METAvivor?
NO IDEA! It’s always been there. I think I first bumped into CJ on the #bcsm twitter chat, long before I was diagnosed with mets.
When did you get involved working with METAvivor?
CJ and I met face to face at the NBCC Conference in 2011, I think. I started getting involved then, and became a board member about a year later.
How much progress do you think has been made for metastatic breast cancer research?
One of the biggest challenges is defining how we measure progress, and on what front. Women are living longer – this is good. There are some new-ish and emerging classes of drugs – also good. But as we move into genomic sequencing for patients, we’re finding how much more there is to know. We can test for genomic mutations, but in so many instances we have no idea what to do with the information. We aren’t funding MBC research at any greater a rate than we had been – still below a paltry 5%. And the system is pathetically cumbersome, with drugs taking a decade or more to get to market, despite our average life expectancy of about 2 years.
What's the one thing about metastatic breast cancer that you feel the public should be more aware of?
That you die from it.
I know a breast cancer diagnosis strikes fear in the heart of anyone who confronts it. It get it. I’ve been there. But early stage disease doesn’t kill. Period. People need to understand that metastatic breast cancer kills, and that one in three patients – including those who believe they were “cured” from early stage treatment – get it. Death, death by disease, is never easy to face. But sweeping MBC under the pink carpet isn’t going to change the numbers. We’re still losing 40,000 Americans a year, while the pink party continue. It’s shameful.
What was the hardest treatment you've been through to date? The easiest?
Probably my chemo – FEC100. It was a stronger dose than they are using now, I think, and it knocked my on my ass. I had a 3-year-old to keep up with at the time so the worst of it was the exhaustion. It also left me feeling like a failing, dying mother. (See comments about early stage treatment above…I drank the Kool-Aid too!)
Easiest? I guess my time on Tamoxifen. It left me hormonal and spacy, but it interfered less with daily life and easy living than the others.
Do you have any special tips or tricks that worked for you in combating any side effects of any form of breast cancer treatment?
Talk to your doctor! There isn’t a side effect too silly to address, and you don’t get points for suffering in silence. If your doc’s solution isn’t working, seek others. Don’t be afraid of complementary medicine. Things like acupuncture and herbal remedies have been tested in human subjects for centuries. But check with your doctor first!
Oh, and peppermint oil for hot flashes. Just a few drops on the back of your neck – it’s a miracle drug. It cools me off within a minute or two, lasts about an hour, and when I’m over-zealous in my use it leaves me so cold I need to put on a sweater.
-------
Thank you, Lori, so very much for taking the time to answer these questions.
Lori can be found at her blog, Regrounding, and on Twitter.
Watch her interview on Lifetime's The Balancing Act.
When were you first diagnosed with Breast Cancer?
Tuesday, February 4, 2002, after the worst weekend of my life. I had my biopsy on a Thursday and waited 5 LONG days to find out. I later discovered (while reading my chart) that the doctor knew that Friday but never told me. He was fired.
When were you diagnosed with Metastatic Breast Cancer?
Interesting that this date is less memorable – late August 2011, just about 2 months before my son’s bar mitzvah.
What were your thoughts upon hearing the metastatic diagnosis? Was your perception correct? What has changed since then?
Honestly – relief. I had spent nearly 2 years watching a tumor marker rise, with scan after scan showing nothing. Without corroborating evidence there was nothing to do but wait. So when it finally showed up I was relieved and ready to get back into treatment.
How did you first learn about METAvivor?
NO IDEA! It’s always been there. I think I first bumped into CJ on the #bcsm twitter chat, long before I was diagnosed with mets.
When did you get involved working with METAvivor?
CJ and I met face to face at the NBCC Conference in 2011, I think. I started getting involved then, and became a board member about a year later.
How much progress do you think has been made for metastatic breast cancer research?
One of the biggest challenges is defining how we measure progress, and on what front. Women are living longer – this is good. There are some new-ish and emerging classes of drugs – also good. But as we move into genomic sequencing for patients, we’re finding how much more there is to know. We can test for genomic mutations, but in so many instances we have no idea what to do with the information. We aren’t funding MBC research at any greater a rate than we had been – still below a paltry 5%. And the system is pathetically cumbersome, with drugs taking a decade or more to get to market, despite our average life expectancy of about 2 years.
What's the one thing about metastatic breast cancer that you feel the public should be more aware of?
That you die from it.
I know a breast cancer diagnosis strikes fear in the heart of anyone who confronts it. It get it. I’ve been there. But early stage disease doesn’t kill. Period. People need to understand that metastatic breast cancer kills, and that one in three patients – including those who believe they were “cured” from early stage treatment – get it. Death, death by disease, is never easy to face. But sweeping MBC under the pink carpet isn’t going to change the numbers. We’re still losing 40,000 Americans a year, while the pink party continue. It’s shameful.
What was the hardest treatment you've been through to date? The easiest?
Probably my chemo – FEC100. It was a stronger dose than they are using now, I think, and it knocked my on my ass. I had a 3-year-old to keep up with at the time so the worst of it was the exhaustion. It also left me feeling like a failing, dying mother. (See comments about early stage treatment above…I drank the Kool-Aid too!)
Easiest? I guess my time on Tamoxifen. It left me hormonal and spacy, but it interfered less with daily life and easy living than the others.
Do you have any special tips or tricks that worked for you in combating any side effects of any form of breast cancer treatment?
Talk to your doctor! There isn’t a side effect too silly to address, and you don’t get points for suffering in silence. If your doc’s solution isn’t working, seek others. Don’t be afraid of complementary medicine. Things like acupuncture and herbal remedies have been tested in human subjects for centuries. But check with your doctor first!
Oh, and peppermint oil for hot flashes. Just a few drops on the back of your neck – it’s a miracle drug. It cools me off within a minute or two, lasts about an hour, and when I’m over-zealous in my use it leaves me so cold I need to put on a sweater.
-------
Thank you, Lori, so very much for taking the time to answer these questions.
Lori can be found at her blog, Regrounding, and on Twitter.
Watch her interview on Lifetime's The Balancing Act.
Tuesday, October 21, 2014
October 21: Interview with METAvivor's Kelly Boyd Lange
I interviewed former METAvivor president and current Secretary/Treasurer Kelly Boyd Lange via email. The following are her replies.
When were you first diagnosed with Breast Cancer?
I was first diagnosed with stage I BC in 1995. I was 32. I opted for lumpectomy/radiation, and chemo wasn't recommended (I think it would be now).
When were you diagnosed with Metastatic Breast Cancer? What were your thoughts upon hearing the metastatic diagnosis? Was your perception correct? What has changed since then?
My first recurrence was in the lumpectomy scar 5 years out. After that I had several lumps under my arm, which were removed in two surgeries. I remember going to the pre-op evaluation for one of those axillary dissections and seeing an oncologist's note describing me as "stage IV". The label surprised me - I was rationalizing that with involvement in the breast and under the arm I was more in line with stage II or III.
Of course, I knew it wasn't good that it kept coming back, but I didn't think of myself as metastatic since I had no involvement in lung/liver/bone/brain - or any other essential organ. That changed when it spread to my skin in early 2007. Even then I can't say I was devastated; I think the incremental progression towards mets prepared me emotionally. I'm not saying it wasn't hard, it's just that I dealt with it so gradually compared with how it happens for most people. At that point I started Herceptin, more than seven years ago now. After two treatments my skin cleared up considerably, and it is still clear today. I count my blessing every day. I know how fortunate I am that I have been so stable for so long.
How did you first learn about METAvivor?
METAvivor found me! I was fundraising for the Komen 3 Day. I was chatting with an acquaintance about the walk, it turns out she was CJ’s neighbor. As soon as CJ heard I was stage 4 she got in touch. It didn’t take long for CJ to get her hooks in me, and set me straight about the state of MBC research!
When did you get involved working with METAvivor?
I got involved right away. I stopped working in late 2006 because of progression, but I was feeling so much better on Herceptin, so I had some time and energy to give. The hard part is getting close to people and then losing them. I try to turn the grief into motivation to keep plugging away. I hope that METAvivor is making a difference.
How much progress do you think has been made for metastatic breast cancer research?
Not nearly enough! The process is painfully slow, and it breaks my heart every time we lose someone that couldn’t hold out for that next hopeful drug. But I am encouraged in some ways. It seems to me like awareness is growing, and our voices are getting louder.
What's the one thing about metastatic breast cancer that you feel the public should be more aware of?
It’s hard to pick just one thing! I would say the public needs to realize that MBC can happen to anyone. It happens no matter how well you take of yourself, no matter how long you have been “cancer free”, no matter how good your health care team is, no matter how young you are. It just happens to 1 in 3 of us.
What was the hardest treatment you've been through to date? The easiest?
The hardest treatment by far was the Adriamycin/Cytoxan regimen that I was on in 2000. The nausea meds just didn’t work for me, and I struggled with blood counts. Compared to the AC, the Herceptin that I am on now is a dream. The worst part is driving to the infusion center! We need drugs like this for everyone – effective and easy to take.
Do you have any special tips or tricks that worked for you in combating any side effects of any form of breast cancer treatment?
I always recommend that people talk to the infusion nurses. They have seen everything, and they are really good at side effect management. It was a nurse who suggested that I try lorazepam for nausea during the AC cycles. It was the only thing that kept me from vomiting non-stop for 24 hours after treatment. The nurses are just full of helpful information!
-----
Thank you so much, Kelly, for taking the time for this interview.
Kelly can be found on Twitter, along with METAvivor.
Watch her interview on Lifetime's The Balancing Act.
When were you first diagnosed with Breast Cancer?
I was first diagnosed with stage I BC in 1995. I was 32. I opted for lumpectomy/radiation, and chemo wasn't recommended (I think it would be now).
When were you diagnosed with Metastatic Breast Cancer? What were your thoughts upon hearing the metastatic diagnosis? Was your perception correct? What has changed since then?
 |
| Starting Herceptin, 2007 |
Of course, I knew it wasn't good that it kept coming back, but I didn't think of myself as metastatic since I had no involvement in lung/liver/bone/brain - or any other essential organ. That changed when it spread to my skin in early 2007. Even then I can't say I was devastated; I think the incremental progression towards mets prepared me emotionally. I'm not saying it wasn't hard, it's just that I dealt with it so gradually compared with how it happens for most people. At that point I started Herceptin, more than seven years ago now. After two treatments my skin cleared up considerably, and it is still clear today. I count my blessing every day. I know how fortunate I am that I have been so stable for so long.
How did you first learn about METAvivor?
METAvivor found me! I was fundraising for the Komen 3 Day. I was chatting with an acquaintance about the walk, it turns out she was CJ’s neighbor. As soon as CJ heard I was stage 4 she got in touch. It didn’t take long for CJ to get her hooks in me, and set me straight about the state of MBC research!
When did you get involved working with METAvivor?
I got involved right away. I stopped working in late 2006 because of progression, but I was feeling so much better on Herceptin, so I had some time and energy to give. The hard part is getting close to people and then losing them. I try to turn the grief into motivation to keep plugging away. I hope that METAvivor is making a difference.
How much progress do you think has been made for metastatic breast cancer research?
Not nearly enough! The process is painfully slow, and it breaks my heart every time we lose someone that couldn’t hold out for that next hopeful drug. But I am encouraged in some ways. It seems to me like awareness is growing, and our voices are getting louder.
What's the one thing about metastatic breast cancer that you feel the public should be more aware of?
 |
| After 2 Herceptin treatments |
What was the hardest treatment you've been through to date? The easiest?
The hardest treatment by far was the Adriamycin/Cytoxan regimen that I was on in 2000. The nausea meds just didn’t work for me, and I struggled with blood counts. Compared to the AC, the Herceptin that I am on now is a dream. The worst part is driving to the infusion center! We need drugs like this for everyone – effective and easy to take.
Do you have any special tips or tricks that worked for you in combating any side effects of any form of breast cancer treatment?
I always recommend that people talk to the infusion nurses. They have seen everything, and they are really good at side effect management. It was a nurse who suggested that I try lorazepam for nausea during the AC cycles. It was the only thing that kept me from vomiting non-stop for 24 hours after treatment. The nurses are just full of helpful information!
-----
Thank you so much, Kelly, for taking the time for this interview.
Kelly can be found on Twitter, along with METAvivor.
Watch her interview on Lifetime's The Balancing Act.
Monday, October 20, 2014
October 20: Obituaries, a MBC reality
In just one day shy of a month, I'll be one year out from my cancer diagnosis. I was metastatic from the start. It's been a rough journey, breaking out of the pinkwashed world and coming to terms with what Stage IV really means.
One of the things I've done is find a free funeral planning website, My Wonderful Life. I've assigned an Angel, someone to release the details of what I've planned to loved ones, and I've also set up a pre-pay arrangement for my funeral. I've written my obituary, and decided that I want a visitation prior to the funeral, and I want to be cremated. My ashes will stay with Jen, and will be interred with hers once she passes.
I'd really like my ashes to be kept in a dragon-themed urn, such as this stunning beauty. The cost of it will come out of my funeral expenses.
This is the reality of Metastatic Breast Cancer. There's no Pink Cure here. And 40% of the people with breast cancer have Metastatic Breast Cancer, which is responsible for 100% of the breast cancer-related deaths. This is why I advocate so hard to keep Stage IV from being ignored. Even people with earlier-stage Breast Cancer are blinded by the pinkwashing and don't realize they're at risk of developing metastasis, regardless of stage and treatment. Stage IV needs more. We need more awareness, more funding, more research. To drive the point home, that those with a metastatic diagnosis are terminal, we have to start actively thinking about things like wills and funerals, and sometimes at a young age, I'll share my obituary. Obviously it will be edited as time passes and things change, but this is how it is today, at this moment in time.
I want the obit printed in three newspapers. The Lincoln Journal-Star, the Fort Wayne Journal-Gazette, and the Bryan-College Station Eagle.
I want memorial donations in my name to go to any of these beneficiaries:
http://www.allfelinehospital.com/
http://www.metavivior.org/
http://www.youngsurvival.org/
http://wishuponawedding.org/
This is the reality of Metastatic Breast Cancer. I'm 40 years old and I have an obituary written. Hopefully it won't need to be published for a long time to come, but I know it will be published. Where's the Pink Hope and Cure for me? It doesn't exist.
If this month has taught you anything about the realities of MBC, please consider making a donation to METAvivor instead of buying pink ribbon merchandise.
One of the things I've done is find a free funeral planning website, My Wonderful Life. I've assigned an Angel, someone to release the details of what I've planned to loved ones, and I've also set up a pre-pay arrangement for my funeral. I've written my obituary, and decided that I want a visitation prior to the funeral, and I want to be cremated. My ashes will stay with Jen, and will be interred with hers once she passes.
I'd really like my ashes to be kept in a dragon-themed urn, such as this stunning beauty. The cost of it will come out of my funeral expenses.
This is the reality of Metastatic Breast Cancer. There's no Pink Cure here. And 40% of the people with breast cancer have Metastatic Breast Cancer, which is responsible for 100% of the breast cancer-related deaths. This is why I advocate so hard to keep Stage IV from being ignored. Even people with earlier-stage Breast Cancer are blinded by the pinkwashing and don't realize they're at risk of developing metastasis, regardless of stage and treatment. Stage IV needs more. We need more awareness, more funding, more research. To drive the point home, that those with a metastatic diagnosis are terminal, we have to start actively thinking about things like wills and funerals, and sometimes at a young age, I'll share my obituary. Obviously it will be edited as time passes and things change, but this is how it is today, at this moment in time.
Susanne Kraus-Dahlgren
"She's a traveler, she's a gypsy, passing through and moving on."
Born April 23, 1974 in Ft Wayne, Ind to her amazing and awesome parents, Michael and Carolyn, who survive her, she moved to TX at age 16, and then later to her final home of Lincoln, Neb, which she shared with her partner and wife of $Years, Jennifer Kraus-Dahlgren, and their furbabies, Josh, Loki, and George Bailey.
She is also survived by her grandmother, Marybelle Timbrook of OH, four aunts, two uncles, their spouses, and dozens of cousins, and five heart-sisters: Rebecca Ford of TX, Kristin Davis of NC, Caity Silke of CA, Laura Schultz of NH, and Sara Lang of TX.
She is preceded in death by three grandparents, Clifford and June Kraus of IN, and Basil Timbrook of OH, and by numerous furbabies who have happily welcomed her to her new home.
In her too-short journey on this earth, she was an actress, a writer, a knitter, a geek, a horseback rider, and a nurse. A daughter, a lover, a friend, a sister, and family to many more than the bonds of genetics define.
"If nothing we do matters, then all that matters is what we do."
I want the obit printed in three newspapers. The Lincoln Journal-Star, the Fort Wayne Journal-Gazette, and the Bryan-College Station Eagle.
I want memorial donations in my name to go to any of these beneficiaries:
http://www.allfelinehospital.com/
http://www.metavivior.org/
http://www.youngsurvival.org/
http://wishuponawedding.org/
This is the reality of Metastatic Breast Cancer. I'm 40 years old and I have an obituary written. Hopefully it won't need to be published for a long time to come, but I know it will be published. Where's the Pink Hope and Cure for me? It doesn't exist.
If this month has taught you anything about the realities of MBC, please consider making a donation to METAvivor instead of buying pink ribbon merchandise.
Wednesday, October 15, 2014
October 15: The Problem of Pink Goalposts
A year ago today, Business Insider released an article highlighting some rather questionable business practices.
For the last few years, throughout the month of October, football fans have grown accustomed to seeing pink everywhere, and merchandise advertised to go toward breast cancer research can be purchased.
After running the numbers for the cuts taken by the NFL itself, by the retailers, manufacturers, and the American Cancer Society administration, article author Cork Gaines arrives at a shockingly low number for what actually goes toward research. 8.01%.
That means if you spent $100USD on Pink NFL merchandise, only eight dollars and one cent would go to research. Fifty dollars goes to the retailers themselves. Manufacturers take thirty seven dollars and fifty cents. That right there totals up to eighty seven dollars and fifty cents out of your $100 purchase. And of the remaining amount, still less than ten percent goes to breast cancer research. The way it's set up isn't to get research funding, it's a marketing ploy.
It should also be noted that the most common place for pink NFL merchandise to be sold is through the league's online store, individual teams and at the stadiums. Therefore, the NFL or the individual teams act as the retailer in this case and therefore receive a portion of the 50 percent that goes toward the "retailer."
By putting the spotlight on the pink ribbon, the NFL is boosting its corporate image and gaining female fans, as well as lining their own pockets.
If you want to buy the pink NFL merchandise for the sake of having it, then by all means go ahead. But don't delude yourself into thinking you're contributing to breast cancer research. If you truly wish to make a difference, look at the product you might buy, look at the price tag attached, and donate that amount to METAvivor's campaign, #GiveItUp4Mets. 100% of your money will go toward metastatic breast cancer research.
Which is worth it, another t-shirt, or hope for 155,000 Americans who are living with metastatic breast cancer? And isn't your money worth more than 8 percent?
For the last few years, throughout the month of October, football fans have grown accustomed to seeing pink everywhere, and merchandise advertised to go toward breast cancer research can be purchased.
That means if you spent $100USD on Pink NFL merchandise, only eight dollars and one cent would go to research. Fifty dollars goes to the retailers themselves. Manufacturers take thirty seven dollars and fifty cents. That right there totals up to eighty seven dollars and fifty cents out of your $100 purchase. And of the remaining amount, still less than ten percent goes to breast cancer research. The way it's set up isn't to get research funding, it's a marketing ploy.
By putting the spotlight on the pink ribbon, the NFL is boosting its corporate image and gaining female fans, as well as lining their own pockets.
If you want to buy the pink NFL merchandise for the sake of having it, then by all means go ahead. But don't delude yourself into thinking you're contributing to breast cancer research. If you truly wish to make a difference, look at the product you might buy, look at the price tag attached, and donate that amount to METAvivor's campaign, #GiveItUp4Mets. 100% of your money will go toward metastatic breast cancer research.
Which is worth it, another t-shirt, or hope for 155,000 Americans who are living with metastatic breast cancer? And isn't your money worth more than 8 percent?
Thursday, October 2, 2014
Wedding Photos
Wish Upon a Wedding has released some of the official pictures from Marla Austin Photography today. I want to share a few of them with all of you.
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| Tis Me! And I love my wig. |
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| The love of my life. |
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| From L to R: Rebecca F., me, Shari (officiant), Jen, Sara L. |
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| First kiss! |
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| From James Avery Jewelers. In Hebrew it reads "Where you go I will go from the Book of Ruth |
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| Jen's bouquet has green carnations, mine has pink. Mine was also in METAvivor colors. |
Saturday, September 13, 2014
Getting closer to the big day
My tooth extraction yesterday went smoothly. The Tramadol I'm already on, coupled with Tylenol, is doing its job of keeping the post-op pain at bay. It's making me nod off quite a bit though. I normally only take Tramadol before bed to stave off arthritis pain in my lower back. I know it is arthritis and not bone mets because the arthritis was confirmed and diagnosed with X-rays a couple of years prior to the breast cancer diagnosis, and it hasn't changed or moved. The Tramadol also helps with joint pain brought on by the Femara.
It is now exactly 15 days before the wedding. The itinerary for the wedding day has been written up, a fine piece of time management by my wedding planner, Tina. She's following up on a few more things for me, and Jen needs to finish setting the reception music with the DJ, Scott. The cake, the catering, the flowers, the decorations, all that's finalized and will be ready to go. I'm super-grateful to all these people who are volunteering their time, energy, and resources to make this a special day.
The Best Maid, Sara, has put together gift bags for the wedding party. It was her idea. She suggested something, I brought up something else, and it snowballed into a project she's enjoyed doing. She's a rockstar. She's also putting together an in-case-of-anything emergency bag with the Matron of Honor, my BFF, Rebecca. Rebecca is also in charge with making any necessary phone calls on the wedding day and helping me transport people to and from the reception.
Sara made beaded necklaces with the Metavivor ribbon attached as a charm, and my bridesmaid, Micchi, made matching earrings to go with the necklaces. These are just some of the goodies included in the wedding party gift bags.
Speaking of gift bags, my mother is having fun planning and putting together snack lunch bags for everyone who'll be riding on the Jone-Z Party Bus from the reception hall parking lot, to the chapel, and back again, since there'll be a layover around lunchtime at the hair salon where the party's getting hair and makeup done. These bags will include a variety of treats, ranging from healthy (and low-carb) options to indulgent, and include a bottle of water and wet wipes for cleanup. She's also bringing up some local soda water from Texas, fifteen bottles in a cooler, for people who want something other than water to drink.
All this activity and the prospect of a lot of people is triggering Jen's anxiety disorder, so Sara and I, along with Jen's "sister", Kim, are plotting ways to keep the attention off her and keeping her from getting overstimulated and having a meltdown. My own anxiety disorder is far more mild and tends to present itself when I don't have a lot going on to occupy my attention.
As far as the plans for Pinktober go, I've got almost all the days filled. I'm holding off on writing any more posts to see what my guest bloggers will produce, along with an interview from someone at Metavivor. I think I have the hang of this queued posts thing figured out, and I'm looking forward to seeing these going live. I think it will be a good month for everyone reading. I'll have a new tag, Pinktober, for all the posts for the month.
It is now exactly 15 days before the wedding. The itinerary for the wedding day has been written up, a fine piece of time management by my wedding planner, Tina. She's following up on a few more things for me, and Jen needs to finish setting the reception music with the DJ, Scott. The cake, the catering, the flowers, the decorations, all that's finalized and will be ready to go. I'm super-grateful to all these people who are volunteering their time, energy, and resources to make this a special day.
The Best Maid, Sara, has put together gift bags for the wedding party. It was her idea. She suggested something, I brought up something else, and it snowballed into a project she's enjoyed doing. She's a rockstar. She's also putting together an in-case-of-anything emergency bag with the Matron of Honor, my BFF, Rebecca. Rebecca is also in charge with making any necessary phone calls on the wedding day and helping me transport people to and from the reception.
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| METAvivor Ribbon Charm |
Speaking of gift bags, my mother is having fun planning and putting together snack lunch bags for everyone who'll be riding on the Jone-Z Party Bus from the reception hall parking lot, to the chapel, and back again, since there'll be a layover around lunchtime at the hair salon where the party's getting hair and makeup done. These bags will include a variety of treats, ranging from healthy (and low-carb) options to indulgent, and include a bottle of water and wet wipes for cleanup. She's also bringing up some local soda water from Texas, fifteen bottles in a cooler, for people who want something other than water to drink.
All this activity and the prospect of a lot of people is triggering Jen's anxiety disorder, so Sara and I, along with Jen's "sister", Kim, are plotting ways to keep the attention off her and keeping her from getting overstimulated and having a meltdown. My own anxiety disorder is far more mild and tends to present itself when I don't have a lot going on to occupy my attention.
As far as the plans for Pinktober go, I've got almost all the days filled. I'm holding off on writing any more posts to see what my guest bloggers will produce, along with an interview from someone at Metavivor. I think I have the hang of this queued posts thing figured out, and I'm looking forward to seeing these going live. I think it will be a good month for everyone reading. I'll have a new tag, Pinktober, for all the posts for the month.
Tuesday, September 2, 2014
A wealth of Information
One of the things I like to do is collect information. A just-for-fun quiz on Facebook the other day said I was a Yenta. A total busybody who wants to know everyone's business. It's not quite untrue. I don't gossip or share other people's personal details, but I like being in the know, I like information. And when something happens, I hit Google and start searching for that information.
I found a wealth of things that were relevant to my breast cancer diagnosis. They either pertained to breast cancer directly, or they were part of the metastatic reality. I keep a public collection of these links available to other cancer patients, and some of them are linked in the righthand column of my blog, but I want to highlight a few of the information sites, along with some blogs, today.
The first is METAvivor which I've mentioned several times in the past. A non-profit group, 100% of their donations go to research specifically for metastatic breast cancer. It's run by people with or impacted by MBC, so they understand the importance of MBC awareness and advocacy. They are the creators of the Metastatic Breast Cancer ribbon and colors. seen to the left.
Next is the Metastatic Breast Cancer Network. Like METAvivor, they funnel donations toward metastatic breast cancer research. They're also credited for making October 13 the National Metastatic Breast Cancer Awareness Day. They are probably the most organized site for information on MBC on the web.
While not strictly metastatic in topic, I'd be remiss if I did not spotlight HIS Breast Cancer Awareness. With all the pinkwashing, men are so often overlooked for breast cancer. Men can and do get it, and because of the lack of understanding and awareness, it's usually stage III or IV by the time it's caught.
Another important source of information is Advanced Breast Cancer. They have a detailed FAQ as well as a comprehensive listing of various standard forms of treatment for MBC, listed by both trade and generic name, and the type of treatment.
By far one of the best sites of information and support for young women any stage of Breast Cancer, including the oft-ignored Stage IV, there's the Young Survival Coalition. With more and more women under the age of 40 getting a breast cancer diagnosis, there's a growing membership and their Navigator packets, which are free, are extremely helpful.
For research studies and clinical trials, there's the Army Of Women, which also welcomes men, and women who aren't diagnosed with breast cancer. You sign up and from time to time, if there's a study or clinical trial that you might qualify for, you get an email alerting you to this fact. It's entirely voluntary, just another source of information that you can choose to act on if you please.
If you find yourself in need of assistance with medication or treatments, visit the Patient Access Network Foundation. They cover far more than just Metastatic Breast Cancer, and they're an invaluable resource for many.
Another good resource that's free for use is the My Wonderful Life. It's a funeral planning website with a great deal of flexibility. And they also offer a program to allow you to pre-pay for your funeral. You can determine what you want to happen to your body on the event of your death, you can write your own obituary, you can write letters to loved ones that will be delivered after you pass, and give you the peace of mind knowing that you've worked out the details in advance so your loved ones don't have that additional stress of planning a funeral.
Wish Upon A Wedding isn't the only wish foundation for adults. There's also the Dream Foundation, which is the adult version of Make-A-Wish, and like WUW, it's not specific to breast cancer. On the specific-to-breast-cancer end, there's the Little Pink Houses of Hope, offering a week-long retreat for those with breast cancer and their families.
Before I move on to highlighting some blogs of other Metsters, there's another site that features a wide variety of links. Someone took the time to track down all the Breast Cancer Freebies and other support resources out there
Now onto the other blogs.
Telling Knots is a poignant and powerful blogger, with thoughts covering not just the metastatic breast cancer experience, but life in Israel in the middle of political and military conflicts.
Regrounding is a blog run by the president of METAvivor, Lori Marx-Rubiner, and covers many aspects of cancer, research, and advocacy.
Uppity Cancer Patient is a blog from one woman with metastatic breast cancer, and discusses some of the realities and issues women with MBC face.
There are more blogs out there, but these are the ones I read, and the ones that deal with Metastatic Breast Cancer that I know about. Feel free to comment with links to more that fit the criteria of having a focus on MBC.
It's my hope that someone will read this entry and be introduced to a resource they hadn't previously known existed, and their life will be richer for the help and information it provides.
I found a wealth of things that were relevant to my breast cancer diagnosis. They either pertained to breast cancer directly, or they were part of the metastatic reality. I keep a public collection of these links available to other cancer patients, and some of them are linked in the righthand column of my blog, but I want to highlight a few of the information sites, along with some blogs, today.
Next is the Metastatic Breast Cancer Network. Like METAvivor, they funnel donations toward metastatic breast cancer research. They're also credited for making October 13 the National Metastatic Breast Cancer Awareness Day. They are probably the most organized site for information on MBC on the web.
While not strictly metastatic in topic, I'd be remiss if I did not spotlight HIS Breast Cancer Awareness. With all the pinkwashing, men are so often overlooked for breast cancer. Men can and do get it, and because of the lack of understanding and awareness, it's usually stage III or IV by the time it's caught.
Another important source of information is Advanced Breast Cancer. They have a detailed FAQ as well as a comprehensive listing of various standard forms of treatment for MBC, listed by both trade and generic name, and the type of treatment.
By far one of the best sites of information and support for young women any stage of Breast Cancer, including the oft-ignored Stage IV, there's the Young Survival Coalition. With more and more women under the age of 40 getting a breast cancer diagnosis, there's a growing membership and their Navigator packets, which are free, are extremely helpful.
For research studies and clinical trials, there's the Army Of Women, which also welcomes men, and women who aren't diagnosed with breast cancer. You sign up and from time to time, if there's a study or clinical trial that you might qualify for, you get an email alerting you to this fact. It's entirely voluntary, just another source of information that you can choose to act on if you please.
If you find yourself in need of assistance with medication or treatments, visit the Patient Access Network Foundation. They cover far more than just Metastatic Breast Cancer, and they're an invaluable resource for many.
Another good resource that's free for use is the My Wonderful Life. It's a funeral planning website with a great deal of flexibility. And they also offer a program to allow you to pre-pay for your funeral. You can determine what you want to happen to your body on the event of your death, you can write your own obituary, you can write letters to loved ones that will be delivered after you pass, and give you the peace of mind knowing that you've worked out the details in advance so your loved ones don't have that additional stress of planning a funeral.
Wish Upon A Wedding isn't the only wish foundation for adults. There's also the Dream Foundation, which is the adult version of Make-A-Wish, and like WUW, it's not specific to breast cancer. On the specific-to-breast-cancer end, there's the Little Pink Houses of Hope, offering a week-long retreat for those with breast cancer and their families.
Before I move on to highlighting some blogs of other Metsters, there's another site that features a wide variety of links. Someone took the time to track down all the Breast Cancer Freebies and other support resources out there
Now onto the other blogs.
Telling Knots is a poignant and powerful blogger, with thoughts covering not just the metastatic breast cancer experience, but life in Israel in the middle of political and military conflicts.
Regrounding is a blog run by the president of METAvivor, Lori Marx-Rubiner, and covers many aspects of cancer, research, and advocacy.
Uppity Cancer Patient is a blog from one woman with metastatic breast cancer, and discusses some of the realities and issues women with MBC face.
There are more blogs out there, but these are the ones I read, and the ones that deal with Metastatic Breast Cancer that I know about. Feel free to comment with links to more that fit the criteria of having a focus on MBC.
It's my hope that someone will read this entry and be introduced to a resource they hadn't previously known existed, and their life will be richer for the help and information it provides.
Sunday, August 24, 2014
October Is Not A Time For Games
I like it on the table. I like it on the couch. I'm going to Germany for five months. Mine is blue! Mine is white! Mine has the pink ribbons! Blueberry! Pineapple! Avocado! Shh! Don't tell the men, it's just for the ladies! Post this as your status and show your support for breast cancer! Where do you keep your purse? What month is your birthday? What color is your bra? What's your relationship status?
Why do we even need a bra, ladies? Go without for a day to show support for breast cancer!
It's that time of the year again when stupid games dominate the Facebook landscape. They make no sense, and have no connection to breast cancer, they do nothing to actually raise awareness, let alone the far-more-needed funding. They exclude men, who can and do die from breast cancer.
The worst part is that some of these games are co-opting October 13 for their participation day. October 13 is the National Metastatic Breast Cancer Awareness Day, and these games aren't even relevant to any stage of breast cancer. How does going without a bra support the thousands of women who struggle with chemo and radiation and surgery and chemical menopause and metastasis? It doesn't.
It's Slactivism at its finest. Posting a random fruit as your status doesn't spread breast cancer awareness. Excluding men as part of your little inboxer games doesn't spread breast cancer awareness. Playing a game in secrecy certainly doesn't spread any sort of awareness. And it does nothing to help.
We have enough awareness of breast cancer itself. What we don't have is awareness of Metastatic Breast Cancer and what it really is. There's no cure. Breast cancer is not the "easy cancer". There is no cure. Thirty percent of women who detect theirs in an early stage go on to develop metastatic disease. An additional ten percent are metastatic from the time they're diagnosed.
When I was diagnosed, I thought it just meant I had to fight harder. It's just breast cancer, after all. Isn't that what we learn in October? Hope and a Cure? It's all about fighting, being a survivor, it's a beatable disease. I've had MBC for less than a year and I've lost count of how many women in groups I participate in have died from breast cancer. Not from treatment, not from something else, but from breast cancer that has metastasized beyond the breast. It goes to the bones. It goes to the brain. It goes to the lungs and liver, and those are just the most common four places.
One woman I knew, she welcomed me to a board when I'd joined, she was beautiful, inside and out. She was only thirty years old. She died several months ago from breast cancer. It's not a game. It's not a fruit. It's not a tee-hee status to keep the men guessing. It's a beast, a monster, and it's very, very real.
We get less than five percent of the funding for research for metastatic breast cancer. The rest goes to early awareness programs, and of course, the ever-important CEO bankrolls. There's no profit in the dying, even though the entire sea of pink is built on the backs of the dead. There's no hope in metastatic breast cancer, and it's not profitable. There's no cure, but that's the secret they can't afford to let out. There's no cure for the early stage breast cancers either. Thirty percent go on to develop metastasis, no matter what.
They can't afford to let that become known. They're all about Hope and Cure, and where would they be if people found out that neither existed? That no one ever talks about the 40,000 deaths each year in the United States due to metastatic breast cancer, that it includes both men and women, and women under 40? What would people do if they knew that the death rate hasn't changed a bit, even with all the years of early detection programs? Nothing has really changed. Breast Cancer is still the killer it has always been, and all we can do is delay it for a while. There's no hope, and no cure. Not without funding for research. There's research out there that shows brilliant promise, but we need funding.
Metavivor.org and MBCN.org are two organizations that funnel donations to research specifically for metastatic breast cancer.
The lives of women and men with breast cancer are not something for you to play a game with, we are not cutesy or naughty Facebook statuses, and we will not let you co-opt the one day of the entire pink month of October we have worked so very hard to get.
Why do we even need a bra, ladies? Go without for a day to show support for breast cancer!
It's that time of the year again when stupid games dominate the Facebook landscape. They make no sense, and have no connection to breast cancer, they do nothing to actually raise awareness, let alone the far-more-needed funding. They exclude men, who can and do die from breast cancer.
The worst part is that some of these games are co-opting October 13 for their participation day. October 13 is the National Metastatic Breast Cancer Awareness Day, and these games aren't even relevant to any stage of breast cancer. How does going without a bra support the thousands of women who struggle with chemo and radiation and surgery and chemical menopause and metastasis? It doesn't.
It's Slactivism at its finest. Posting a random fruit as your status doesn't spread breast cancer awareness. Excluding men as part of your little inboxer games doesn't spread breast cancer awareness. Playing a game in secrecy certainly doesn't spread any sort of awareness. And it does nothing to help.
We have enough awareness of breast cancer itself. What we don't have is awareness of Metastatic Breast Cancer and what it really is. There's no cure. Breast cancer is not the "easy cancer". There is no cure. Thirty percent of women who detect theirs in an early stage go on to develop metastatic disease. An additional ten percent are metastatic from the time they're diagnosed.
When I was diagnosed, I thought it just meant I had to fight harder. It's just breast cancer, after all. Isn't that what we learn in October? Hope and a Cure? It's all about fighting, being a survivor, it's a beatable disease. I've had MBC for less than a year and I've lost count of how many women in groups I participate in have died from breast cancer. Not from treatment, not from something else, but from breast cancer that has metastasized beyond the breast. It goes to the bones. It goes to the brain. It goes to the lungs and liver, and those are just the most common four places.
One woman I knew, she welcomed me to a board when I'd joined, she was beautiful, inside and out. She was only thirty years old. She died several months ago from breast cancer. It's not a game. It's not a fruit. It's not a tee-hee status to keep the men guessing. It's a beast, a monster, and it's very, very real.
We get less than five percent of the funding for research for metastatic breast cancer. The rest goes to early awareness programs, and of course, the ever-important CEO bankrolls. There's no profit in the dying, even though the entire sea of pink is built on the backs of the dead. There's no hope in metastatic breast cancer, and it's not profitable. There's no cure, but that's the secret they can't afford to let out. There's no cure for the early stage breast cancers either. Thirty percent go on to develop metastasis, no matter what.
They can't afford to let that become known. They're all about Hope and Cure, and where would they be if people found out that neither existed? That no one ever talks about the 40,000 deaths each year in the United States due to metastatic breast cancer, that it includes both men and women, and women under 40? What would people do if they knew that the death rate hasn't changed a bit, even with all the years of early detection programs? Nothing has really changed. Breast Cancer is still the killer it has always been, and all we can do is delay it for a while. There's no hope, and no cure. Not without funding for research. There's research out there that shows brilliant promise, but we need funding.
Metavivor.org and MBCN.org are two organizations that funnel donations to research specifically for metastatic breast cancer.
The lives of women and men with breast cancer are not something for you to play a game with, we are not cutesy or naughty Facebook statuses, and we will not let you co-opt the one day of the entire pink month of October we have worked so very hard to get.
Tuesday, August 19, 2014
On Mammograms and Early Detection
Lori Marx-Rubiner, the President of METAvivor Research and Support, recently published an open letter to Amy Robach on her blog.
Ms. Robach spoke of the need for mammograms and aggressive treatment in order to beat breast cancer, and how breast cancer makes one stronger. Ms. Marx-Rubiner had an excellent response to this media myth, as well as highlighting some of the realities of metastatic breast cancer.
An open letter to Good Morning America News Anchor and breast cancer “survivor,” Ms. Amy Robach
Below are some key points that I found especially relevant.
And she also included a list of what we know about MBC, or rather, how little we do know.
Ms. Robach spoke of the need for mammograms and aggressive treatment in order to beat breast cancer, and how breast cancer makes one stronger. Ms. Marx-Rubiner had an excellent response to this media myth, as well as highlighting some of the realities of metastatic breast cancer.
An open letter to Good Morning America News Anchor and breast cancer “survivor,” Ms. Amy Robach
Below are some key points that I found especially relevant.
I’m not saying mammography is bad, and as you say, it’s what we have. But let’s be thoughtful about it. We know that “catching it early” doesn’t necessarily make for a good prognosis. Many scientists believe that some cancers will spread and others will not, no matter how long they are in the breast. Many scientists also believe that if you are going to metastasize it is likely to have happened before initial treatment begins.
Let’s take, for example, DCIS. You can’t catch cancer any early than this “Stage 0″ diagnosis, where cells have yet to even leave the milk duct where they developed. While I can’t prove it, the trend I am personally seeing is that women diagnosed with DCIS are seeking aggressive amputations of their breasts and even ovaries to avoid the possibility of future disease. It is a fact that Stage 0 patients can and do metastasize – and it’s likely some do so before their DCIS is detectable. The same is true of women who have hereditary markers for cancer (BRCA1 and BRCA2 positive) – and these women have no discernible disease; rather they have a higher risk of disease.
And she also included a list of what we know about MBC, or rather, how little we do know.
We don’t know how many are diagnosed because unless one is diagnosed at Stage IV, we are already in the cancer registries and don’t get updated recorded again.
We don’t know how many of us are living with MBC for the same reason
We do know that about 30% of breast cancer patients will eventually metastasize. We know they will come from every single stage, including Stage 0, and we know that it can literally take decades from initial treatment before MBC shows up.
We do know that approximately 40,000 Americans will die from MBC this year, and that number hasn’t meaningfully changed in over a decade.
We also know what will save our lives: research.
We do NOT know why, when MBC accounts for 30% of patients and 100% of breast cancer deaths, our funding hovers below 5% of all breast cancer research funding.
Saturday, August 2, 2014
Advocacy
The final stage, it lies forgotten,
Drowned out in a world made of pink.
Breast cancer is cured, they say,
And it applies to even us, they think.
This is not true, the fight and hope,
We fight among the best.
But the cancer has its foothold
Far beyond our breast.
It matters not the gender
Or the age of who is claimed.
Religion, race, creed, or country,
It takes us all the same.
We see a finer beauty left to live
And, too, we keenly feel
The loss of moments now denied-
A reality too real.
To honor our fallen brethren,
We must raise a hue and cry,
And bring awareness for the Fourth
Before our own time comes to die.
Metastatic cancer is oft ignored
In favor of those who survive.
We beg researchers to forget us not,
For we too are still alive.
The ones who found theirs early,
Metastasis strikes even they.
Thirty percent cannot run nor hide,
And struggle to keep it at bay.
Ten percent more are metastatic
From the time they're initially seen.
For them, the hope of cancer-free
Has died before they can dream.
Of all the funding raised in the pink
A mere two percent goes toward mets.
The rest goes to CEOs and overheads,
And programs for early detect.
Thirty percent for the thirty
Is all that we ask, nothing more.
It's time to acknowledge metastatic disease
And to stop ignoring Stage IV.
Drowned out in a world made of pink.
Breast cancer is cured, they say,
And it applies to even us, they think.
This is not true, the fight and hope,
We fight among the best.
But the cancer has its foothold
Far beyond our breast.
It matters not the gender
Or the age of who is claimed.
Religion, race, creed, or country,
It takes us all the same.
We see a finer beauty left to live
And, too, we keenly feel
The loss of moments now denied-
A reality too real.
To honor our fallen brethren,
We must raise a hue and cry,
And bring awareness for the Fourth
Before our own time comes to die.
Metastatic cancer is oft ignored
In favor of those who survive.
We beg researchers to forget us not,
For we too are still alive.
The ones who found theirs early,
Metastasis strikes even they.
Thirty percent cannot run nor hide,
And struggle to keep it at bay.
Ten percent more are metastatic
From the time they're initially seen.
For them, the hope of cancer-free
Has died before they can dream.
Of all the funding raised in the pink
A mere two percent goes toward mets.
The rest goes to CEOs and overheads,
And programs for early detect.
Thirty percent for the thirty
Is all that we ask, nothing more.
It's time to acknowledge metastatic disease
And to stop ignoring Stage IV.
Saturday, July 26, 2014
Wish Upon A Wedding
Wish Upon a Wedding, as I mentioned a while back in my last post, has granted Jen and I our wedding wish.
Our wedding planner, Tina, has been hard at work getting positions filled, and finding venues and volunteers. A marvelous photographer and videographer have already met with us for the engagement session, so the foundation can share our story.
Susanne & Jennifer : A Love Story
Many thanks to Marla Austin Photography and A Sound Impression for their hard work!
Our wedding party has all confirmed being able to attend, and the invitations have been mailed out. We're already starting to get the RSVP cards back.
Sunday, the 28th of September, is looking to be a long day, as we have to be at Omaha by ten in the morning to get checked into our hotel, and then meeting at the parking lot of the Millard Plaza Ballroom in Omaha to board the party bus donated for the evening by the Jone-Z company. We'll have a stopover in Council Bluffs for the wedding party to get hair and makeup done for the ceremony, and then off to Shelby, Iowa to the Willow Creek Glass Chapel for the ceremony.
The wedding colors are raspberry pink, gray, and black. Jen's dress is pink, mine is a soft dove gray, and the wedding party will be in black. There will also be touches of green and teal to represent the metastatic breast cancer ribbon.
We're asking that in lieu of gifts, donations be made to METAvivor Research & Support, Inc. in our names.
In the meantime, I've been writing posts on the YSC Forum and I should repost them here as well. It captures my frustrations with having metastatic disease, and the overall lack of support and research that goes into a cure for us.
Our wedding planner, Tina, has been hard at work getting positions filled, and finding venues and volunteers. A marvelous photographer and videographer have already met with us for the engagement session, so the foundation can share our story.
Susanne & Jennifer : A Love Story
Many thanks to Marla Austin Photography and A Sound Impression for their hard work!
Our wedding party has all confirmed being able to attend, and the invitations have been mailed out. We're already starting to get the RSVP cards back.
Sunday, the 28th of September, is looking to be a long day, as we have to be at Omaha by ten in the morning to get checked into our hotel, and then meeting at the parking lot of the Millard Plaza Ballroom in Omaha to board the party bus donated for the evening by the Jone-Z company. We'll have a stopover in Council Bluffs for the wedding party to get hair and makeup done for the ceremony, and then off to Shelby, Iowa to the Willow Creek Glass Chapel for the ceremony.
The wedding colors are raspberry pink, gray, and black. Jen's dress is pink, mine is a soft dove gray, and the wedding party will be in black. There will also be touches of green and teal to represent the metastatic breast cancer ribbon.
We're asking that in lieu of gifts, donations be made to METAvivor Research & Support, Inc. in our names.
In the meantime, I've been writing posts on the YSC Forum and I should repost them here as well. It captures my frustrations with having metastatic disease, and the overall lack of support and research that goes into a cure for us.
Thursday, February 27, 2014
Kohl's contacts Metavivor!
The power of social media (and the threat of lawyers) has come shining through. Kohl's called Metavivor, and the conversation was described as "amicable". They're expressing a willingness to listen.
Keep using the #TalkPink tag, and let them know what we want. We just want to be heard. 30% of funding should go to Metastatic Breast Cancer research for the 30% of us who develop it.
It's not just women - men get breast cancer too, and a disproportionate number of them develop metastatic disease due to the lack of awareness of male breast cancer.
Metastatic breast cancer is the form that kills 40,000 people - women and men alike - each year. Yet only 2% of research funding goes toward that.
Pinkwashing has created the mindset that with early detection, we're cured. 20% of the 30% were early detections, and yet the cancer cells still managed to slip under the radar and metastasize in the body. For 10% of us, early detection failed.
More and more younger women are developing metastatic disease, and for some of us, like me, it wasn't even diagnosed until it reached Stage IV mets. Pinkwashing has created an oversaturation of awareness and a loss of understanding of the risks and dangers. Breast cancer can be cured? It's not that easy nor that certain.
Keep using the #TalkPink tag, and let them know what we want. We just want to be heard. 30% of funding should go to Metastatic Breast Cancer research for the 30% of us who develop it.
It's not just women - men get breast cancer too, and a disproportionate number of them develop metastatic disease due to the lack of awareness of male breast cancer.
Metastatic breast cancer is the form that kills 40,000 people - women and men alike - each year. Yet only 2% of research funding goes toward that.
Pinkwashing has created the mindset that with early detection, we're cured. 20% of the 30% were early detections, and yet the cancer cells still managed to slip under the radar and metastasize in the body. For 10% of us, early detection failed.
More and more younger women are developing metastatic disease, and for some of us, like me, it wasn't even diagnosed until it reached Stage IV mets. Pinkwashing has created an oversaturation of awareness and a loss of understanding of the risks and dangers. Breast cancer can be cured? It's not that easy nor that certain.
Tuesday, February 25, 2014
The Elephant in the Breast Cancer Room
Not so much an elephant anymore, because a lot of people are coming to realize just how hard Komen sucks. But not enough people realize that yet. It's still picking up steam.
First, they yoinked support from Planned Parenthood, which provides a full range of health care for women, including those below poverty level. Some PP clinics were even able to offer these services for free to women who couldn't otherwise afford them. These services included life-sparing early detection procedures for cancer.
They also have a history of suing anyone and anything they suspect might be infringing on their "copyright". They're not raising awareness for breast cancer and funding research. They're running a pinkwashing business and raking it in at the cost of lives.
Now, they're stealing someone else's campaign, and pinkwashing it into another cutesy movement, and throwing the lives of those who are dying under the bus in the process.
In 2012, METAvivor started The Elephant in the Pink Room campaign, to combat the pinkwashing and bring awareness and attention to the 30% of us with Metastatic Breast Cancer.
Now Komen has teamed up with Kohl's to bring us the Pink Elephant campaign. Because we apparently don't talk about Breast Cancer enough. Apparently we don't have enough Awareness. We need to Talk About Breast Cancer. And in the process, let's overlook those 30% of women while stealing their campaign because dying is, you know, just so depressing.
There's been other blog entries, a lot of them, about this travesty, and I cannot recommend strongly enough that you go read them.
Komen and Kohl's had a social network hashtag for this campaign: #TalkPink. The #bcsm on Twitter is doing their own Occupy Hashtag, dragging it into the metastasis mud and bringing awareness while keeping the spotlight on the douchebaggery of these two businesses.
Keep getting the word out. Boycott Kohl's until they drop the campaign. Defund Komen and run them out of town.
And support METAvivor, which has issued an awesome rebuttal letter to Kohl's over this incident.
First, they yoinked support from Planned Parenthood, which provides a full range of health care for women, including those below poverty level. Some PP clinics were even able to offer these services for free to women who couldn't otherwise afford them. These services included life-sparing early detection procedures for cancer.
They also have a history of suing anyone and anything they suspect might be infringing on their "copyright". They're not raising awareness for breast cancer and funding research. They're running a pinkwashing business and raking it in at the cost of lives.
Now, they're stealing someone else's campaign, and pinkwashing it into another cutesy movement, and throwing the lives of those who are dying under the bus in the process.
In 2012, METAvivor started The Elephant in the Pink Room campaign, to combat the pinkwashing and bring awareness and attention to the 30% of us with Metastatic Breast Cancer.
Now Komen has teamed up with Kohl's to bring us the Pink Elephant campaign. Because we apparently don't talk about Breast Cancer enough. Apparently we don't have enough Awareness. We need to Talk About Breast Cancer. And in the process, let's overlook those 30% of women while stealing their campaign because dying is, you know, just so depressing.
There's been other blog entries, a lot of them, about this travesty, and I cannot recommend strongly enough that you go read them.
Komen and Kohl's had a social network hashtag for this campaign: #TalkPink. The #bcsm on Twitter is doing their own Occupy Hashtag, dragging it into the metastasis mud and bringing awareness while keeping the spotlight on the douchebaggery of these two businesses.
Keep getting the word out. Boycott Kohl's until they drop the campaign. Defund Komen and run them out of town.
And support METAvivor, which has issued an awesome rebuttal letter to Kohl's over this incident.
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