As October approaches, we will see a parade of pink ribbons, gathering momentum throughout the month. Lots of inspiring stories, donation campaigns, pink labels on the things you buy all the time. And lots of businesses will make lots of money, courting your business for “the cause” and donating “a percentage” to the breast cancer [...]
As October approaches, we will see a parade of pink ribbons, gathering momentum throughout the month. Lots of inspiring stories, donation campaigns, pink labels on the things you buy all the time.
And lots of businesses will make lots of money, courting your business for “the cause” and donating “a percentage” to the breast cancer cause.
I hate pink ribbons! I hate them and I wear them. When I was in chemotherapy they made me feel supported. Now I see them on cereal boxes, cat litter, you name it. Blech.
When I was diagnosed in 2007, I was under the impression that breast cancer was a disease that had been mostly conquered. I had heard all about early detection, better treatments, etc. etc. etc.
What? Stage III? Inflammatory Breast Cancer (survival rate: 20-40%) Really?
Do you know what really happens when a woman is diagnosed with breast cancer?
Regardless of what stage her disease is, she has a one in three chance of it coming back as metastatic disease.
Breast Cancer kills, folks. It kills 150,000 people this year.
My friend Kathleen has posted about how the media, especially women’s magazines, support our complacency with erroneous drivel disguised as facts.
Why is this pinkwashing going on?
Well, all the folks who make money with your purchases would like us to believe we are winning the battle against breast cancer, so we can feel like we are doing something. If we feel that we can do something (because we are good citizens of course) easily by buying this or that pinkwashed product, then everybody from toilet paper manufacturers to water providers can cash in on increased sales from which a tiny percentage they make their token donation.
The Pink Crusade has a very dark underbelly. Those of us who have been through the hell of what real breast cancer is steel ourselves for the sweetness and light of Breast Cancer Awareness Month that is a figment of the collective imagination.
The battle looks very much as it has for decades.
We’ve made strides. But we have won skirmishes, not the battle.
Too many women and men still die. Too many are now living with metastatic disease, subjecting themselves to treatments that make them sick to get some more time. Who among us wants to leave before we are ready?
What would you do if you were running out of time and you weren’t done yet? What drugs wouldn’t you try?
If you were sick with chemotherapy or compromising your quality of life for more time, or losing the use of your arms, back, or brain to cancer that just keeps marching on, what the hell would you be saying about the Pink drive for dollars, and the commercialism of breast cancer?
So what can we do?
1. Research before you buy. Don’t just buy because there’s a pink ribbon on the box. Bookmark Think Before You Pink and take action.
2. Join Army of Women. Be a part of the search for the CURE, not more mammograms or salaries for CEO’s of nonprofits. Those are important, but the cure is the most important. I am thankful for mammograms but my cancer did not show up on a mammogram, and I am not alone (that’s not what you heard, is it?). I will be ecstatic when I know my daughter can grow up without fear.
3. Get behind Deadline 2020.
4. Donate directly to legitimate breast cancer charities. Fund raise if you like, but make sure that you know exactly where the proceeds are going.
I would like to rename Breast Cancer Awareness Month to Face Reality Month. Anybody with me?
I just added another post on this topic at Everyday Health. Let’s take back October!
Not much else to say. The ups and downs of Planet Cancer. I’m still here, going backpacking tomorrow. My dear friend Susan in the hospital. Next week I’ll post from a mom who beat a nasty lung cancer, but today I have no heart for it. Susan’s battle pisses me off. Please, go join Army [...]
Not much else to say. The ups and downs of Planet Cancer.
I’m still here, going backpacking tomorrow.
Next week I’ll post from a mom who beat a nasty lung cancer, but today I have no heart for it. Susan’s battle pisses me off.
Please, go join Army of Women if you haven’t yet.
Get behind Deadline 2020 if you’re not there yet.
Pray for another drug to use when the ones my friends are using don’t work anymore.
Back next week on a happier note! For now I just gotta be mad.
After I posted last night, I thought hard about it and then looked up heat rash. This morning it was better. If it was skin mets my calendula cream would do nothing for it! All appears to be well, and I am again so grateful. I never take anything for granted anymore, or try not [...]
After I posted last night, I thought hard about it and then looked up heat rash.
This morning it was better. If it was skin mets my calendula cream would do nothing for it! All appears to be well, and I am again so grateful. I never take anything for granted anymore, or try not to! Sometimes I slip and start to forget just how precious my life is to me. Then another little scare puts it all into perspective.
We all get scared sometimes. It felt good last night to write about it. In fact, the last phrase came out with a simultaneous sigh of comfort. Sometimes just acknowledging what’s so makes it less so. Strange how that works.
I remember one day during chemo, not quite three years ago. It was my third Adriamycin/Cytoxan infusion. It was the weekend. I had chemo on Wednesdays, and Fridays were usually the worst days. Saturdays were a little less bad, and by Sunday I was breathing a sigh of relief that another one was done.
This particular Saturday, I was at my boyfriend’s house. This became our pattern on chemo weekends. I’d just hang there, he’d take care of me, and we did mellow things. On the alternate weekends we both had our kids, and the four of them got along famously. We did mostly normal things (me less vigorously, but we still did) and that helped me remember what normal felt like. I tried to take a nap on this particularly miserable Saturday, and just couldn’t get comfortable. I was overwhelmed by my multiple discomforts. They were more than the sum of their parts. Finally I gave up and came out into the kitchen, where my boyfriend was busy just doing his household things.
I looked at him and started to cry. He was a real trooper that day. He dropped what he was doing and listened to me. I complained that my stomach was queasy, everything hurt, I was desperate to sleep and every time I started to drift I had to pee, because that wretched red devil Adriamycin is a bladder irritant. I spilled it all. I whined. I expressed how tired of it I was and I still had five more to go. He just listened. After I dumped it all out and looked at it, I picked myself up, went back to the bed and went to sleep for awhile. I felt better when I got up later.
Last night when I was in a panic the thought occurred to me to just say it. Just look at it, tell the truth about it, and sit with that. Yes, I was spooked. Yes, this is part of survivorship. After I freaked, then I could face what was scaring me and look at it closely. I found some pictures of heat rash and it sure looked like that to me!
I went to bed last night just as chipper as I could be.
After that awful 3rd A/C infusion, it was not until the following Wednesday morning that I felt human again. Did I mention that I had a sinus infection as well? That the A/C had a nice antibiotic piggyback on top of it? That my head felt like it was going to blow up? What I remember most was the sheer joy of waking up on a spring morning and feeling good. I was so happy I just wandered around the apartment singing at the top of my lungs for happiness. I must have kept it up for at least an hour. Mozart, Faure, Puccini, smatterings of my favorite operas and show tunes, reveling in the high notes, drawing in great breaths of life.
I feel a little bit like that today.
And for Linda, and for Pat, and others who have asked. It’s so hard to know where to start with Complementary Therapies! My first thought when I was diagnosed was that I would use all the big guns my oncologist recommended, and all the big guns from the Complementary Therapies arsenal. At the time I [...]
And for Linda, and for Pat, and others who have asked. It’s so hard to know where to start with Complementary Therapies! My first thought when I was diagnosed was that I would use all the big guns my oncologist recommended, and all the big guns from the Complementary Therapies arsenal. At the time I was diagnosed, I had been a full time professional Massage Therapist for nearly 20 years. I knew all about complementary therapies, but I had been neglecting myself, badly. I wasn’t just a wounded healer. I had been limping for a long time. I had just emerged from an awful divorce, huge work stress (the hospital where I worked was downsizing, and the pressure was on!), and my children were suffering. They were 7 and 9. I knew something had to give, but I didn’t really know how to get out of the quicksand I was in.
When I got the diagnosis, I knew I had to fight and fight hard. I decided that I had an opportunity to heal my whole life, and that embracing that task would give me the best chance to survive. I sought healing of body, mind and spirit, and most importantly to mend the rifts between them. The word “congruence” was my operative word, and still is. So, my take on complementary therapies is really an approach rather than just a list of modalities. having said that, I pretty much used them all!
My practices for myself:
1. Say “yes” when anyone offered help. Accept with gratitude. Believe that I deserved the help and that giving it was a blessing to the ones who offered.
2. Put myself first, for the first time ever in my life, no matter who it upset. I was fighting for my life, and I knew it. A total stranger told me to do this, and I believed her.
3. Actively and deliberately sought my own happiness. It took awhile to figure out what that looked like.
4. Made a decision to stop beating myself up, period. Nothing was gained by my perfectionism, and I was beating myself down. Now I question my tendency to self blame, and if I find something that needs to change, I take note and move on.
I had to rely on #1 a lot, because I was not in a financial position to pay for everything I received. Still, I accepted it, and it all helped, more than the sum of it’s parts. Here’s my list:
1. Massage Therapy. I received a massage once a week while I was receiving chemotherapy. My colleagues at the hospital did this for me voluntarily, on their own time. I will always be deeply grateful for this.
2. Healing Touch. I received this through a Stanford University study called Healing Partners. I received one session per week for six months.
3. Acupuncture. My mom offered to pay for this because she knew it would help. I was a struggling single mom when I went on this journey so I did not have the funds to do this. I received acupuncture once every two weeks.
4. Guided Imagery. I believe this had a huge impact on my treatment. I used it to keep my blood cell counts up, to maximize the effectiveness of my treatments, and for healing after the treatments were over. I’ve already written a short article about that on the pages for Complementary Therapies. Excellent Guided Imagery CD’s and MP3 downloads are available from Health Journeys.
5. Support: I went to an Art and Imagery support group. This was a combination of Guided Imagery and using art therapeutically. It was very helpful. That program closed at the hospital and I really miss it. I also found my Caringbridge site to be a huge source of support.
6. Counseling. Fortunately for me, this was available through California Cancer Care where I received my treatments.
7. Laughter! I didn’t do “laughter therapy” (whatever that is…I haven’t tried Laughter Yoga but I have a friend who’s into it and loves it) but at the time I was diagnosed I had been attending a comedy improv class every week, and I made sure to continue. I timed my chemotherapy so I would be up for my class, and I didn’t miss a single one! Even after my surgery, I couldn’t play, but I could watch. I’m convinced that laughing my head off every week was very good for me.
8. Exercise is very important! I took advantage of the “Living Strong, Living Well” program at my local YMCA and did weights, cardiovascular exercise, and whatever else seemed like fun. I also did yoga at home, and some chi gong. I had a couple of videos and they worked well for me. I have a chi gong video that offers a 10 minute sequence for cleansing, called simply “chi gong for cleansing”. I am convinced that my complete recovery from surgery with my range of motion intact is because I did yoga.
9. Nutrition: My doctor told me, “Eat what looks good to you”. I wanted to be a martinet about what I ate, but I had decided to accept all help so I indulged in comfort food when it was offered. What I did do is create a smoothie that covered all the bases, and I had that every day during chemotherapy. Now I’m a bit more careful, but not super strict. I find the information on “Food for Breast Cancer” useful and I read the research they publish.
10. Cultivate hope, actively. I read everything I could get my hands on about recovering. The book “Remarkable Recovery” was my constant companion. I read the stories over and over, especially if I was feeling worn out by it all. The gist of what I got from it was that beating the odds was about doing it how you do it best, and it’s different for all of us.
11. Self expression and creativity. Everybody has her own way to do this. I found blogging, and loved it. I also got tons of support online, which was a huge help. I picked up a paint brush for the first time in 20 years or so. As I went through radiation, I was also rehearsing for a musical, again for the first time in 20 years. For you it may not be this sort of stuff, it may be something else, but whatever it is, it makes your spirit hum! If you’ve forgotten what that is, it’s time to discover it again!
12. Prayer. Whenever anyone offered to pray for me, I said yes, by all means please do! Acknowledging that my life was worth praying for, and allowing total strangers to pray for me (I was on a ton of prayer lists) was an important act of self love. There is research that supports the effectiveness of prayer, and I believe deeply that true self love sets all kinds of positive cellular happenings in motion.
13. Substitute “Feel Everything” for “stay positive”. I heard that stay positive stuff all the time from well meaning people. Being a Pollyanna does not help. Neither does denial. What does help is honoring what you feel, give it expression, and keep things moving. I didn’t elevate my lousy mood by pretending I didn’t have it. I blogged, “feel like crap, going to bed” and then later absorbed the messages of hope from my friends on my guestbook. I cried my way through a few infusions, and then felt better. After I cried I could make art or settle into my warm bed with some hot chocolate. Everything is allowed!
There’s my first stab at it ladies, for my dear IBC sisters and anyone else this may help. If you have any questions about what’s here so far, or want me to elaborate some more, please send me an email at firstname.lastname@example.org. What you tell me you want is what will be in Part Two. In the meantime, I am sleuthing out links and resources.
I hope this helps!
Here is the post that started the Army of Lego Princesses The Army of Strong, Brave Princess is growing. Go to Toddler Planet and follow the link to Annie’s blog, and believe that this world is full of good people! I ran into a friend today, one of my theater buddies. Our two daughters talked [...]
The Army of Strong, Brave Princess is growing. Go to Toddler Planet and follow the link to Annie’s blog, and believe that this world is full of good people!
I ran into a friend today, one of my theater buddies. Our two daughters talked and played games on our cell phones while we had a good visit, a hard one too. She is terribly worried about a dear friend of hers, another mother fighting cancer. Felicia shared her ambition to involve her school in a massive fundraising effort for cancer research.
We had stopped into a store earlier in the afternoon that is run by a breast cancer survivor. She’s got this cute little shop on B street in downtown San Mateo, dedicated to making a difference. You can find out more about her at www.livingpeacefullystore.com. I found out that Barb was a cancer survivor when I asked her about the “Cancer Sucks” bear she had on display. I used to wear a badge on my bucket hat that said the same thing! It made me smile.
Felly and I got matching little heart necklaces with a peace sign inside. Hers is pink, mine is purple. After we visited the store, we got some frozen yogurt and she told me what she wants to do. She is envisioning car washes, bake sales, maybe a musical theater production, all to raise money for cancer research. I think she was inspired because the lady who runs the store has a son in Felicia’s P.E. class.
How many of our children have been touched? How many want to do something, and don’t know who the others are in their community that also want to do something? I’m looking forward to seeing what happens.
It’s a mighty good world, with good folks in it. Yes, there is all kinds of ugliness, violence, want, disease. And, joining together to do something about these things is such a deep satisfaction, such exhilaration, such hope. Today instead of being paranoid about my aches and pains (I have a spot at the front of my right hip that is bothering me, stretching like a nut so I can make it go away and stop worrying) I can focus on what I am able to do, and remind myself to take care of myself so I can keep doing it.
Susan, what you inspire in others inspires me. The disease you face stinks and what your courage in the face of it draws from people is simply amazing and wonderful. Now that little lego princess is on my desk too, every time I turn on my computer.
Rock on Princess!
I am continually noodling around, looking for other sites, other survivor bloggers, other IBC warriors, other resources. I love it that I can spend hours looking, and find tons of stuff, and read other people’s stories. It’s hard, too. So many of these stories frighten and inspire me. I want to send out a massive [...]
I am continually noodling around, looking for other sites, other survivor bloggers, other IBC warriors, other resources. I love it that I can spend hours looking, and find tons of stuff, and read other people’s stories. It’s hard, too. So many of these stories frighten and inspire me.
I want to send out a massive war cry, and tell every one of the women whose blogs I have discovered that I am scrapping. I will continue to scrap, as long as I have breath, as long as I have the health that I never, ever take for granted any more.
For the women I haven’t met, who are dealing with metastatic disease, who are fighting to stay alive, I was to shout from every high place that that we who can fight for a cure are determined, and we’re not giving up.
There was just too much lousy bad news this week! Too much!
I can also go rummaging around and find inspiration and good news, people who survive all kinds of cancer, people who continue to make the world a better place advocating, telling their story, looking after others who are fighting cancer and others who will in the future.
I found a link today, the Annie Appleseed Project. It’s a website developed by a breast cancer survivor, and it is all about complementary and alternative therapies. I believe deeply that using CAM to support my body during the aggressive treatments I had was very, very helpful. I understood that the goal was for me to withstand the treatments, and taking a comprehensive approach helped me to do that. I’ve added the link to Annie Appleseed under “Resources”.
Another great thing about the internet is that none of us are alone. I was stunned and delighted to discover that my rant over at Everyday Health got a huge response, and a man from Germany wrote to tell me that his wife is a 12 year IBC survivor.
That makes my day!
We live during exciting times. The world is getting smaller. If we want to badly enough, cancer can become a thing of the past, like diptheria or other diseases we don’t even remember the names of.
I for one want it really, really badly, for all those women I have never met, who are my sisters in the IBC family we never asked to be a part of.
I just got news of a four day conference this spring in Washington D.C. and I want to go. I asked my husband if they could do without me for a week. He told me no, but they would have to, because I’ve got to go! I just realized that I can’t because “The Wiz” is running right at that time, and I don’t have a double.
That’s ok, there will be more. And I am going.
Calling all night shift workers! Army of women has a new study that is investigating the possibility of a connection between erratic sleep and breast cancer. 300 subjects are needed. If you work at night, have no history of breast cancer, and want to help uncover the causes of breast cancer, please, please sign up [...]
Calling all night shift workers!
Army of women has a new study that is investigating the possibility of a connection between erratic sleep and breast cancer. 300 subjects are needed.
If you work at night, have no history of breast cancer, and want to help uncover the causes of breast cancer, please, please sign up for this study!
You can learn more by following this link:
It will take an army to eradicate breast cancer. Men can join also. It will take an army, but I believe it can be done. Please join us!
Today one breast cancer death is in the spotlight. One high profile woman who advocated for breast cancer awareness, and fought for health care reform, has died before her time. Elizabeth Edwards was aware that she had resources that many women do not have. She was deeply concerned for women who are uninsured, poor and [...]
Today one breast cancer death is in the spotlight. One high profile woman who advocated for breast cancer awareness, and fought for health care reform, has died before her time.
Elizabeth Edwards was aware that she had resources that many women do not have. She was deeply concerned for women who are uninsured, poor and under served by our health care system. Each one of us who is currently dealing with breast cancer or who has had it, can feel the blow of one more who has left before it was time.
Today I am mindful of the ones who I have come to love that I never met. Today I mourn for Andrea, Jo, Susan, Modmom, J, Julia, Katie, Jen, Lisa, Manda, Amber, Renee, Sue, RivkA, others whose names I do not know and for Marianne, who I knew personally. All of these women left before they were ready. They were pathfinders. Their journeys, and their passing, never leaves my awareness as so many of us work to get the word out about screening, diagnosis, and the research that will create a future without breast cancer.
I am in appreciating of the women who are still here, doing what they can, working to help women get diagnosed, cope with treatment, and survive. I am grateful to my friend Valerie, an IBC survivor who continues to push for more and better research about IBC. Vicki Tashman, founder of PinkLink, is providing resources for a healthy survivorship and support for the newly diagnosed. There are many others. I stumble on them during my meanderings on the webs. They all inspire me.
My fellow IBC bloggers, many of whom are battling metastatic disease, are relentlessly getting the word out, raising awareness, and coping with cancer with amazing grace and courage.
I am sorrowful today, and I am committed. I am part of the Army of Women, literally and figuratively. Please join us if you have not. I can believe in a world where my daughter doesn’t have to be a warrior, and needn’t grieve for the wounded and the fallen.
Goodbye, Elizabeth. We will miss you.
You may have noticed my new icon to the right, the link to Army of Women. This organization is the brainchild of Avon and Dr. Susan Love, and it’s purpose is to end breast cancer by learning how it starts in the first place. This is a question researchers have been asking, but finding people [...]
You may have noticed my new icon to the right, the link to Army of Women. This organization is the brainchild of Avon and Dr. Susan Love, and it’s purpose is to end breast cancer by learning how it starts in the first place.
This is a question researchers have been asking, but finding people to participate has been the main obstacle. To find out the answers, researchers need no less than an army!
If you have never had breast cancer, you are needed. If your mother, sister, grandmother, or any other close relatives have had breast cancer, you are needed. If you are fighting it you are needed. If you are a survivor, you are needed!
We are all needed. Women, men (yes, men!) survivors and everyone else, the research that will answer the question will take an army.
If you join the Army of Women, you will be invited to participate in research, but are in no way obligated. Being part of the Army of Women means that you stay up to date on what’s happening in the research world. You can be part of it at whatever level you want to be.
I’ve joined the Army of Women. I’ve joined it without hesitation, for my sister, my friends, my mom, so many women and men that I love. Most of all I joined for my beautiful 11 year old daughter, Felicia. I am imagining a world where she can grow up free of the fear of breast cancer.
For more information, click on the purple Army of Women link on the right. Please join us! You are needed!
About The LIberation of Persephone/ElizabethElizabeth Danu started this blog to provide a postive and useful resource for people facing cancer and thier loved ones. She is now a ten year survivor of Stage IIIC Inflammatory Breast cancer, enjoying her post-cancer life as a mom, blogger, speaker, wellness consultant and unquenchable optimist. She also sings and performs regularly with her a capella quartet, Curious Blend.
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DO NOT DUPLICATEAll text and art found on these pages belong to Elizabeth Danu, Copyright 2008 - 2014 unless otherwise noted. All rights reserved. Unauthorized use of any material on this site is strictly prohibited. For permission to use anything presented here, please contact me directly. Elizabeth Danu
Disclosure:My intention with this website is to provide an oasis of hope for those facing a fierce diagnosis. Any proceeds from this site go towards building this resource and for breast cancer research, particularly directed towards Deadline 2020 for the end of breast cancer. Blessings, Elizabeth
My bedside companion in 2007
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