Wow. Hard to believe my last post was over a year ago! This place must look like a ghost town. Where does the time go? I have an interesting job these days, that I’ve been getting used to for the last six months. It has created a very interesting perspective on my cancer experience! What [...]
Wow. Hard to believe my last post was over a year ago! This place must look like a ghost town. Where does the time go?
I have an interesting job these days, that I’ve been getting used to for the last six months. It has created a very interesting perspective on my cancer experience! What I do is screen massage therapists for an on-demand massage network. I work for Soothe, interviewing therapists and accepting them into the network (or not). The part that’s taking some getting used to is that the job includes receiving 30 minute practicals from candidates.
Sure, it’s great to get massages every day I go to work. It’s fabulous! My office mates tease me about my tough job, lol.
What I didn’t think about was how it would be explaining my contraindications at sometimes three times a day, up to ten times a week.
Before I can proceed with having a therapist give me a massage, I have to tell her about my lymphedema, the tight fascia on my left side, and the neuropathy on my feet. At first it felt a little weird. Now I’m used to it. It takes the edge off after you say it enough times.
I am 5’7″, have blue eyes, spend more time at a computer than I’m used to, and I have lymphedema. Oh, and there’s no breast there on the left. And the sky is blue.
Technically, I still have breast cancer, and I’m in remission. To me, I had breast cancer. Once I had cancer that I could see and feel, I could watch it shrink, and after surgery I could joyfully believe it was gone. NED, no evidence of disease, means that chances are good that it’s gone. It’s been eight years now. If I don’t think it’s gone, and that I had (past tense) inflammatory breast cancer, I could go crazy with worry and not live my life.
I recently started downloading and editing the Caringbridge journals that I kept while I was going through it. Soon I found myself drawn in, even though I’m just mostly downloading. One night after getting lost in the journals, I became fixated on the risk of late recurrence and kept myself up all night noodling on the internet and worrying.
It’s always there. It’s probably good to just relegate it into another fact I recite to a massage therapist so I get a great massage.
I feel a bit sheepish for staying away from here so long! For every woman out there who’s just been diagnosed, I’m still here. I’ll try to be here in my cyber room a little more often.
Well, one teen and one pre-teen. She’ll be 13 in August and she’s practicing. This morning I was appreciating that I didn’t have to rush so much, not the way I did in the pre-cancer days. I would, like so many parents, get myself ready for work and get my offspring ready for school, then [...]
Well, one teen and one pre-teen. She’ll be 13 in August and she’s practicing.
This morning I was appreciating that I didn’t have to rush so much, not the way I did in the pre-cancer days. I would, like so many parents, get myself ready for work and get my offspring ready for school, then race out the door for a busy day and not get home until the day was done. I have it set up differently now.
They get me up. I make coffee for me and tea for them, and see that they are well fed. I pack her a lunch and give him lunch money, which is how they like it. I enjoy my coffee with them, and then I take him to high school and her to middle school. Sometimes the journey is friendly, sometimes not, usually amusing if my sense of humor is intact (sleep?). I get home and leisurely prepare to work. I either prepare to see a massage client, do some writing, or work on theater stuff for the drama club at the elementary school. It’s lovely. I am tickled to report that as of today I have replaced all the income I will lose next month when my disability expires. I have added four hours per week at the children’s hospital, and I am getting some new clients. How can I not believe in a benevolent universe?
This morning was hilarious. My daughter, the great leaver of messes and trasher of the car, was berating me for a banana peel that I had left in a Starbuck’s cup that I then threw away. An exchange ensued, wherein she was reminded by her brother and me that she uses the back seat for her own private closet. As the volume and irritation began to crescendo, my son began singing “love is in the air” plaintively. After we dropped him off, my other child leaped over the seat into the front. It would not do to arrive at Middle School being visible in the back seat!
When we arrived, she announced that she was going to “chill” for a moment. I stopped the engine, and she applied lip balm, sent a couple of texts, and enjoyed her favorite tween song (boring) on the radio. Then with a great flourish she exited the vehicle, it seemed to me to greet her fans.
I sat there for a moment and thought, I could have missed this. I wouldn’t have even known what I was missing.
I thought of my friend Susan, who had to leave her babies while they were in kindergarten. Sometimes life is unbearably cruel, even in a benevolent universe.
Today, if the rain gives us a break, some 2nd and 3rd graders, 4th and 5th graders, the choreographer and I will dedicate a school garden.
Life is ever so sweet today.
Susan, your passing brings such deep sorrow and so much gratitude for your life. I myself am speechless, so let others more articulate on the web tell the story. The world already feels more hollow without you in it, and a better place because you were here. http://www.care2.com/causes/susan-niebur-stargazer-fighter-and-friend.html toddler planet The Washington Post The WhyMommy [...]
Susan, your passing brings such deep sorrow and so much gratitude for your life.
I myself am speechless, so let others more articulate on the web tell the story.
The world already feels more hollow without you in it, and a better place because you were here.
I can say nothing to add to these stories, except that I was blessed to sit at “the blogger’s table” with her last may in D.C., and got to hug her. We knew each other through our blogs and our shared diagnosis. We traded comments and encouragement.
She made an enormous difference in my life, and in the lives of so many, across so many paths: scientist, mother, IBC activist, advocate, friend. She was an extraordinary woman, taken from this world too soon, before she was even forty.
Tonight I cry. I have made space for that this week. The world must stop for a time.
There is a progression through pink for those of us who get down and dirty into the real world of breast cancer. I liked pink ribbons in the beginning. They made me feel less alone. Now, the truth about breast cancer is in the front of my mind and I am annoyed by the large [...]
There is a progression through pink for those of us who get down and dirty into the real world of breast cancer. I liked pink ribbons in the beginning. They made me feel less alone.
Now, the truth about breast cancer is in the front of my mind and I am annoyed by the large scale public complacency about a disease that we have been led to believe doesn’t kill people any more. I used to believe that. I had heard about mammograms saving lives and seen the pictures of triumphant women in pink hats all sweaty and beaming from their race for the cure. I was shocked when I realized that my survival was not a foregone conclusion.
This month, I am acutely aware of sisters all over the internet who are dealing with metastatic disease. I am acutely aware that many, many women still have never heard of Inflammatory Breast Cancer.
This last couple of weeks, I have been feverishly exploring freelance opportunities, because I want to free myself from the constraints of location and schedule. The added bonus that I love to write makes this strategy a no-brainer. I am going to a conference this month to learn more, to become a more effective advocate. The more work I can do on the internet, the more I can afford to take time to go where I can be of service. This is the desire of my heart, as I near the five year anniversary of my diagnosis.
Another sister who first faced IBC in 2007 is struggling and it is deeply, deeply painful to me.
One of my favorite people, Ginny Mason, said:
“I’m on this side of the grass, so I figure I have a responsibility”. Ginny is a 20 year plus survivor, which gives us all hope! She is the mastermind and prime mover of the IBC Research Foundation.
So, in keeping with my responsibility because I am on this side of the grass, I used my new found influence at Associated Content to publish an article on IBC. I became a Featured Contributor this last month and one of my first assignments was to write an article about any disease or condition I wanted. Of course I wrote about IBC. It made the front page of the “health” section of the Associated Content website and so far has been viewed over 5000 times in the last three days. That’s 5000 people who didn’t know, and now they do! You can view the article here. Please send it on to anyone you know who may not know about Inflammatory Breast Cancer!
My personal agenda this month is to stir the pot as much as possible!
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!
This originally appeared on the Inflammatory Breast Cancer support list. Brenda’s recap was so thorough and well written that I am posting it here, with her gracious permission. Sun, May 8, 2011 6:06:49 AM The NBCC Conference was an amazing, three-day, highly choreographed event that left me breathless. It is what ritual does, at its [...]
This originally appeared on the Inflammatory Breast Cancer support list. Brenda’s recap was so thorough and well written that I am posting it here, with her gracious permission.
Sun, May 8, 2011 6:06:49 AM
The NBCC Conference was an amazing, three-day, highly choreographed event that left me breathless. It is what ritual does, at its best, and they did it very well, indeed.
Many of the attendees were first-timers, like me and Kate. I don’t know what their conferences are like when they are not rolling out a new organizational campaign, but given that all conferences are centered on training participants to go to Capitol Hill and lobby for breast cancer issues, I’m guessing that most of them are more or less like this one.
They were very tactful but very clear that none of us was there to talk to our lawmakers about things on our own minds about breast cancer — our own pet issues. We were there to talk to the lawmakers about the NBCC’s issues. Each state delegation that visited legislators was managed by a “team leader” who is an experienced NBCC member and has done this several times before. She was the one who did most of the speaking to the legislators, and she made sure that our group delivered its basic message. Others were allowed to speak, and as we demonstrated ourselves able to stay on-target with the NBCC message, we were allowed more and more opportunity for this as lobbying day wore on.
Before lobbying day, however, we had three days of back-to-back-to-back conference. I’ve been to a few conferences in my day, and this one was handled rather differently than what I am accustomed to. First, breakfast and lunch were provided during the conference–a way of keeping all participants on-site and ready to hear the talks. Second, there were not a gazillion vendors selling or giving away all kinds of merchandise. There was a lobby day table, an Army of Women sign-up table, an NBCC merchandise table, and the silent auction area. That’s it. Third, the area where these tables were located was closed during the plenary sessions. Again, the point was to keep us in the conference hall and listening to the talks, not wandering around doing other things.
There were also a variety of individual break-out workshops for us to attend. But there was only time for three of them. The rest of the time was taken up with the plenary sessions. This really was a conference designed to EDUCATE us. They tried to make that education as convenient and compelling as possible. And they did a great job of it.
The talks were almost uniformly engaging and informative. The conference began with a welcome by Fran Visco, who introduced the new NBCC initiative, Breast Cancer Deadline 2020 — the eradication of breast cancer by January 1, 2020. They had a couple of professionally produced promotional videos for this–very compelling. Fran met the understandable skepticism head-on. “What if we fail?” she asked, and then responded, “We already have.”
Her point is that in the decades that we have been spending millions and billions of dollars on breast cancer research, we have not come very far toward curing it. We (as a group of women with BC and our various organizations) have focused our attention on early detection (better screening methods) and awareness. But early detection, she points out, is not prevention. And awareness is not prevention.
The frustrating truth is that in the last two or three decades, the survival rate from the kinds of breast cancer that are most dangerous have not improved much. Most of the improvement in survival statistics has been driven by the inclusion of women with forms of breast cancer (or proto-cancer) that would most likely never have become life-threatening, whose conditions were discovered thanks to improved screening techniques. Also, she pointed out, the survival statistics are five-year survival stats, and we know that many times breast cancers recur as metastases later than five years after diagnosis. So the improvement in BC survival as reflected in the five-year statistics is not really as great as it seems on the surface.
Here’s the most telling statistic, to me: Twenty years ago there were 119 women every day who died of breast cancer. Today, after two decades of “pink” awareness, there are 110 women every day who die of breast cancer. This is good. It’s an improvement, no doubt about it. But it’s not good enough!
What we need, Visco said, are two things: (1) a way to prevent women from ever getting breast cancer at all, and for those few who do, (2) a way to prevent metastasis, which is what kills us (not our primary tumors). Of all women who get breast cancer, roughly 30% of us will eventually become metastatic or are metastatic at the time of diagnosis. The vast majority (more than 90-95%) of women with metastatic breast cancer will eventually succumb to the disease. (The rest die of their treatments for the disease or other complications.) This must stop.
The solution, says the NBCC, is to quit hoping for a cure, and set a deadline for one. Hope waits. Deadline acts.
The NBCC is proposing several initiatives, the most important of which are a three-year commission to try to bring together researchers and get them working together, outside of their limited research silos (at a cost of $20 million the first year and $30 million for each of the next two years), and continuation money ($150 million) for the Department of Defense Breast Cancer Research Program, which has been a model of efficient and productive use of taxpayer money in BC research.
The new commission’s proposed budget includes 25% for giving seed grants to researchers whose ideas for curing breast cancer are innovative and promising, but don’t yet have the level of evidence behind them to make them likely to win one of the DOD Breast Cancer Research Program awards. Grants from the seed money will try to funnel new researchers and research ideas into the current mix, in order to accelerate the discovery of a cure for BC.
The best cure of all, the conference presenters said over and over again, would be not to ever get breast cancer in the first place. The NBCC is already supporting a project (Project Artemis) to develop a vaccine, which is apparently a real possibility.
My personal take on all this is that while we may be able to drastically reduce the number of women who get BC, it is in the very nature of the cancer beast that we are not going to be able to prevent all forms of BC, which I suspect is caused by multiple factors–not just one easily targetable thing. So why did the NBCC set a deadline for the end of cancer — and such a close deadline — if it’s not likely to be completely do-able, much less do-able by then? I suspect it has to do with the sub-title of the “Deadline” initiative: changing the conversation.
The conversation about breast cancer in the larger BC community has been on “early detection saves lives.” It’s been on awareness of the illness — bringing it out of the closet and into broader awareness, getting backing for more research on the disease and how to detect it. The whole approach is based on the premise that early stages of breast cancer don’t tend to become metastatic — only later stages do. So the earlier we can find it and treat it, the more likely we are to prevent its progressing to deadly metastatic disease. Thus, we improve the cure rate. We now know that this is not true.
BC cells don’t “learn” how to become metastatic only when they have progressed to become a Stage III cancer, so if you can catch it early and keep it from progressing, all will be well. Even Stage 0 breast cancer can develop the ability to disseminate cancer cells throughout the body, where they find hospitable micro-environments and lay in wait for an opportunity to grow. Sometimes that happens quickly, sometimes it doesn’t happen until many years later. When it does happen, it’s mets. Stage IV cancer.
So the “early detection saves lives” conversation is not a very useful way of thinking about and approaching breast cancer, as it turns out. We need to focus our conversation in a different direction. While I think that eradicating breast cancer by January 1, 2020, is probably not possible, I firmly believe that re-focusing the CONVERSATION ABOUT breast cancer is do-able by that deadline. And that would be a huge, huge thing. Re-focusing how we think and talk about breast cancer means we will re-focus our research priorities. And THAT will lead to an end to breast cancer, one day.
There is some tension between the “rah-rah pink” crowd in the breast cancer world and the crowd that wants to focus more clearly on the continuing needs in breast cancer research and advocacy. I hope that that tension can be overcome, because we need all hands on deck for this. I hope that many individual groups around the country will join the NBCC, which is, after all, a coalition of groups. I hope that many individuals will do their small bit to support the NBCC Deadline 2020 agenda.
I was pleased to see this conference focus on prevention of BC. I was even more pleased to see it focus so much attention on the prevent of mets. (After all, I have a horse in that race!) There were several talks that referenced this. Quite a number of us walked around the conference wearing stickers saying “Ask me about metastatic breast cancer.” At the end of the conference day on Sunday, an impromptu, informal group of women with mets gathered in one of the break-out rooms for a meet-up. Pat Steeg, a mets researcher at the NCI, was there, too, just sitting quietly in the background. But I noted that as everyone went around the room and briefly introduced themselves and told their stories, her eyes got very red and watery.
I was also very, very happy to meet so many people whose names I have come to know via our various listservs. Musa Mayer, Ilene Winkler, Maria Wetzel, Ginny Mason, Ann Fanta, Elizabeth Danu, Kelly Kruger, Valerie Frasier, Pam B from Michigan …who have I missed? I am bad with names and worse with faces, so I’ve been trying to mentally conjure the image of each person I met and say to myself, “Remember this face! This is XXXXX!”
There was only one problem that I could see with the message of the NBCC, which I otherwise heartily endorse. That is the fact that preventing BC and preventing mets doesn’t do anything toward *curing* metastatic disease. Prevention is great. I’m all for that. As I said, I have a horse in that race. But prevention won’t be much use to my many friends who already have mets.
A cure for mets, you say? I say, yes. Only THAT will be the REAL and FINAL cure for breast cancer. At the conference, one of the speakers mentioned that if we can learn enough about what drives the development of metastases, we may be able to figure out how to put existing mets to sleep — make them dormant so that they don’t kill us. This goal is not formally a part of Deadline 2020, but it may be on some distant horizon somewhere out there. I hope I live long enough to see it become a reality.
If anyone has even a twinge of interest in attending the next NBCC conference, I urge you to give in to the twinge. You won’t regret it. It leaves you with a head full of new stuff, a heart full of hope, and the compulsion to try to do more to end breast cancer.
Brenda Denzler is, like me, a stage III Inflammatory Breast Cancer Survivor who attended the NBCC advocacy conference to end breast cancer by January 1, 2020. We both have the possibility of recurrence and metastasis to contend with, as does anyone with IBC. It was great to meet her and 13 other IBC sisters this trip! She currently doesn’t have a blog, but when she starts one I’ll link to it here!
We lost one on the list today. One of my IBC sisters could not stop the relentless forward march of this stinkin’ lousy disease. No matter what was thrown at the beast, it just kept on keepin’ on until it’s host could fight no more. Stupid parasite. My last blog on Everyday Health generated comments [...]
We lost one on the list today. One of my IBC sisters could not stop the relentless forward march of this stinkin’ lousy disease. No matter what was thrown at the beast, it just kept on keepin’ on until it’s host could fight no more. Stupid parasite.
My last blog on Everyday Health generated comments from two survivors, one of 12 years, and one of five years. The five year survivor had story similar to what I posted yesterday. Still here, backwards treatment and all!
We need to know you’re out there, survivors!
I had a great day today. I gave a massage, did theater with some kids, and then went to the childrens hospital. Now my husband and my son are bugging me to get off the computer and go watch “V” with them. Life is good.
Everybody deserved a life that makes her as happy as mine does me. Let’s make it happen by 2020.
I was about business as usual today, having to do with my offspring. Discussing what they had experienced, I shared that I had faced IBC in 2007. The woman I was talking to said, “I had that”. Whoa! She was sitting across from me behind a desk, looking just as fine as you please, had [...]
I was about business as usual today, having to do with my offspring. Discussing what they had experienced, I shared that I had faced IBC in 2007.
The woman I was talking to said, “I had that”. Whoa! She was sitting across from me behind a desk, looking just as fine as you please, had it in 1995. She didn’t want me to take her picture or make a fuss. She was not into a fuss thanks, got stuff to do.
What’s amazing about her story is that she’s alive, and the doctors who treated her botched it one way after another. She was diagnosed Stage IIIC IBC not before, but AFTER 2 botched surgeries where they took the wrong part of the breast! The third surgery yielded the proper diagnosis, MRM, only one breast, not bilateral because “we don’t do that”. Lots of dreadful chemo after (yes, after!) the surgery, which did not include herceptin of course because even though her cancer was Her2+ herceptin did not exist. Then, she did not get radiation either!
Yikes! And there she is, cool as a cucumber, telling me about it!
Go figure. Sometimes the best care in the world does not do what we want it to, sometimes the worst in the world doesn’t stop us from conquering. The happy medium is that these days, when women and doctors know more than they have ever before, and patients are full on players in their own story, more and more of us are going to beat it and get on with it, and decide for ourselves whether “making a fuss” is useful or not.
So much for statistics, prognosis, or any other attempt to predict the outcome of anything!
I guess what this reinforces for me is that always, always, anything is possible.
I continue to make a big fuss, to help keep things moving forward in the right direction as much as I can, for all of those who can’t.
My 15 year IBC survivor friend is quietly doing a whole world of good where she is. She is impacting the next generation, and I’m so glad that she’s still around, doing what she’s doing. She is someone I will run into frequently in my everyday life. Now every time I see her I have another reason to smile, and smile big.
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.
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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This blog is a labor of love, and it has to fit into the nooks and crannies of my crazy, busy, wonderful life.
The few ads, affiliate links and other goodies help me enjoy getting my blog groove on here without feeling like I'm playing hooky, since I have dependents and I'm supposed to be at work! I also share the love with my favorite breast cancer research organizations.
Thanks so much!
- after treatment (21)
- Breast Cancer Awareness (4)
- chemotherapy (18)
- children (2)
- Complementary Therapies (4)
- Deadline 2020 (6)
- Feelgood (8)
- Getting Through Treatment (1)
- Guided Imagery (1)
- Guided Imagery (3)
- Humor (6)
- Inflammatory Breast Cancer (12)
- Life (4)
- Living well (7)
- Lymphedema (1)
- metastatic breast cancer (1)
- nutrition (3)
- prevention and diagnosis (7)
- recurrence (5)
- research (8)
- Resources (2)
- self care (32)
- statistics (4)
- Support (11)
- surgery (2)
- Survivorship (31)
- Uncategorized (69)
- Elizabeth on Inflammatory Breast Cancer
- Allan Birmantas on Inflammatory Breast Cancer
- Auntie on Contact Me
- Elizabeth on What to Know Before Your First Chemotherapy Session
- Sheila Warren on What to Know Before Your First Chemotherapy Session
- September 2016 (1)
- September 2015 (1)
- August 2014 (2)
- April 2014 (1)
- March 2014 (1)
- February 2014 (1)
- October 2013 (1)
- August 2013 (1)
- May 2013 (2)
- January 2013 (1)
- October 2012 (1)
- August 2012 (2)
- July 2012 (2)
- May 2012 (4)
- April 2012 (3)
- March 2012 (3)
- February 2012 (4)
- January 2012 (2)
- December 2011 (2)
- November 2011 (3)
- October 2011 (3)
- September 2011 (7)
- August 2011 (9)
- July 2011 (3)
- June 2011 (1)
- May 2011 (5)
- April 2011 (3)
- March 2011 (2)
- February 2011 (7)
- January 2011 (11)
- December 2010 (26)
- November 2010 (29)
- October 2010 (9)
Tagsadvocacy appreciation army of women breast cancer breastcancer breast cancer awareness month cancer cancer statistics cancer treatment Caringbridge chemotherapy chemotherapy 101 deadline 2020 diagnosis Elizabeth Danu gratitude guided imagery happiness healing IBC imagery inflammatory breast cancer liberationofpersephone media medication metastatic disease neulasta nutrition pink ribbons preventing breast cancer relationships research self care sleep statistics survival survive survivor survivors survivorship theliberationofpersephone.com thrive time management white blood cells yoga
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
- The Liberation of Persephone is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com. Every item listed with this program has been personally used and valued by the author.