Ah, the work of establishing an identity, coupled with raging hormones…my children are working so hard! Now, what’s my excuse? Actually, I can’t complain because at nearly 50 I’m pretty sure what I want to be when I grow up but I’ll never grow up, ever, so I’m just going to continue having fun. As [...]
Ah, the work of establishing an identity, coupled with raging hormones…my children are working so hard!
Now, what’s my excuse?
Actually, I can’t complain because at nearly 50 I’m pretty sure what I want to be when I grow up but I’ll never grow up, ever, so I’m just going to continue having fun. As long as I do this daily I will keep moving towards what I want to be when I grow up. I was reflecting on this today as I thought about this website, which is nearly a year old, born right around my birthday last year. My original vision was to create a site that would help people, but I didn’t know what that looked like. I floundered around a lot, trying to figure out what my site wanted to be when it grew up. I noodled around the internet into the wee hours, and slowly learned how to manage my own little queendom as I waded through spam and created and trashed numerous pages. Sometimes I didn’t blog at all because I didn’t know what I was supposed to be blogging about, forgetting that I blog because it makes me happy. Today I was berating myself because the site is, in my mind, a poorly organized ramble of disparate resources, until I logged on and found a comment that told me that this weekend someone found this site and was encouraged.
Amid the sturm and drang (storm and stress, a la Beethoven) I am coming to some clarity about what I’m doing here, and the results should start taking shape in the next few weeks.
And my teen, my tween and I?
My tween had a call back for the Fall musical today, and was a handful and a half. My friend called her a wild cat. She’s 12, and everything is just so monumentally imperative and urgent! I take a deep breath and try to stay on for the ride. We worked together on her audition pieces and had dinner together before her audition. My husband auditioned as well, and they just got home a little while ago, wound up probably until the wee hours tonight.
My teenager is right on track, already on top of all of his classes except algebra, because he bombed a quiz due to girl distraction. Here it comes…
As for me, I am suffering from too much good stuff to choose from. Much as I wanted to be in this next musical, I did not audition because I know I would be overstretched. The children’s hospital where I work is starting an outpatient pain clinic, and I am the primary therapist. I love the hospital work, I just love it! I worked on Saturday with inpatients and came home feeling blessed.
Soon the drama club will be resuming, and there is the possibility of adding another school and another club.
I have an advocacy workshop coming up in October and I hope to go backpacking again once more before the season is completely kaput. So alas, eight weeks of intense rehearsals would be too much, and I am jealous all the same!
I’m writing for fun, and trying to get better at it.
This site, however, is my baby. It is now an unruly teenager and needs to be directed!
What I want to do here is to reorganize a little so that anyone who comes here can find resources. I want to sleuth out more great links, as well as write some good posts about ones that I already know about.
More inspiring stories, more humor, more simple how-to’s like how to keep your fingers from going numb when you’re on Taxol for example, more just plain ol’ uplift and leg up. More tools for more varieties of hard knocks!
As for posts, I am going to experiment and give myself permission to write about whatever I want, as I did when I went through treatment. My life was an open book, and somehow that was so liberating! A teacher of mine once told me, “the personal is the most general”, and scribbling is as good for my health as exercise and vitamin D.
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!
I guess I’ve been resettling and regrouping. I’ve also been sick, which includes it’s own anxieties. I had a wisdom tooth infection, then a flu/cold bug that lingered, and lingered, and lingered, and now some back pain most likely from doing something stupid, but alas go wheels and cogs. I really am looking forward to [...]
I guess I’ve been resettling and regrouping. I’ve also been sick, which includes it’s own anxieties. I had a wisdom tooth infection, then a flu/cold bug that lingered, and lingered, and lingered, and now some back pain most likely from doing something stupid, but alas go wheels and cogs.
I really am looking forward to feeling healthy again. It’s been weeks, and that’s just a bummer for anybody.
I also took a break from all the “cancer stuff”. Sometimes it’s just so hard. I want to do everything I can to bring hope and positivity to a really rough journey, for whoever has to take it. Unfortunately I haven’t figured out how to do that and not get overwhelmed by the suffering of others. Yes, it overwhelms me. I don’t like it. Who does? Cancer sucks, yes indeed.
I’m hoping I’ll learn more at the end of April, when I go to the conference in D.C. I’m thrilled that they awarded me a scholarship! Now I really have to go dig in, and figure out how to do that and keep myself sane and happy. This is something I really want to do.
Recently I read “The Emperor of All Maladies”. I was deeply touched by the story of herceptin, and the obstacles that came up to getting it into mainstream medicine where it could save the lives of people like me. There was a woman, waiting on the edge of life, begging to be given the new drug. Genentech would not release it because all clinical trials had not been completed. The woman died.
On the day of her death, activists, survivors, and patients drove their vehicles in an outraged demonstration onto the grounds of Genentech, over the lawns, through the parking lots, honking their horns and and waving signs in an uproar of protest.
More compassionate and timely studies have emerged since then. That woman did not have the power to fight alone. Because of the rest who did, many like me are still here.
My goal in the next few weeks is to actively and deliberately, with much inward work and outward resources, find a way to be a cancer warrior without having my life identified by cancer. I need to find a way to have days and maybe even weeks that I don’t think about it, because that is healthy survivorship. I need to pick the brains of other women I admire who manage to continue their healthy and happy survivorship and be the rocks that they are for others who suffer.
So, onward, back to life, back to rehearsals. The Wiz is opening on March 25! It’s going to be a great show. I’m in all of them, since I’m not doublecast, but to see my husband rock as The Wiz, check out the Silver Slippers Cast! Tickets are available at www.bayareaetc.org.
Hope to see you there!
This is the name of a kid show that my daughter watches. Once again I am up when I it would be better for me to be in bed. I just have this Type A streak that will never reform! I’m not upset about it. I don’t mind being a Type A if it is [...]
This is the name of a kid show that my daughter watches. Once again I am up when I it would be better for me to be in bed. I just have this Type A streak that will never reform! I’m not upset about it. I don’t mind being a Type A if it is about something that makes me feel alive and passionate, something important.
What made me think of “random” is the phenomenon of survivor’s guilt. That’s been a hot topic on one of my discussion groups, and it is something I struggle with sometimes. When I read a story like the one I just wrote about for instance. Some women go through chemotherapy and it is not effective, and they try something else, and nothing works. For some it works well, for some marginally. I have a new friend I’ve never met, and we both posted to another about the fear of recurrence that plagues all of us. Right out of treatment, we all wonder if we’ve really dodged the bullet. The fact is there’s no knowing, and predictors don’t always tell the story. My friend Kelly, whose cancer presented in a much more complicated way and responded to treatment poorly in the beginning, is still here, as am I. We are, as we have discovered, part of the “Class of 2007″. We are discovering that there are a lot of us! Quite a few of us it seems have busted the statistics.
Now, what about the early stage cancer, the one where treatment went smoothly, margins were clean, plenty of options, and the nasty beast comes back and wreaks havoc? It’s just not fair! When I read about a young mother who lost her battle after a 14 month fight, I stand in amazement and gratitude. I don’t feel guilty most of the time, but I feel unbelievably blessed.
What cancer does is just so random. It is unpredictable, capricious, unfair. Part of living after and surviving well is learning to live with uncertainty!
What I know is that since I am still here, it is my gift and privilege to continue to advocate on behalf of those who cannot, and to do my part for those who will be diagnosed.
It’s not guilt anymore, exactly. It’s a sacred assignment that is mine because I am alive. Since I am alive, and have this assignment, it is imperative that I safeguard my future and present as much as I can.
Now, to bed, because my body is telling me it wants rest.
I’m going to be nice to my friend and take her to bed! Follow the link to “My Body, My Friend” at Everyday Health.
My cancer was very hard on my children. The tough part about that was that I was not strong enough to give them everything I wanted to, to help them cope with it. Remembering the dream I had about Felicia crying and crying, a bottomless well of grief as it seemed, I really wonder what [...]
My cancer was very hard on my children. The tough part about that was that I was not strong enough to give them everything I wanted to, to help them cope with it.
Remembering the dream I had about Felicia crying and crying, a bottomless well of grief as it seemed, I really wonder what it is like for a young child. My son, who was nine at the time, went from irascible and boisterous to quiet and well behaved. He acknowledged to me later that he was scared out of his mind. My daughter acted angry all the time, and berated me,
“Ever since you got cancer all you care about is yourself!” Her little seven year old soul found it easier to believe I was being selfish than to know how sick I was.
Obviously, I had to take care of myself, or I could not hope to be around to raise them! It was heartbreaking.
So, how can we support our children when we are coping with cancer treatments and everybody in the neighborhood is caring for them?
I got my children into therapy, and I am glad that I did. I discovered that my children did not want to burden me with things that bothered them, because they did not want to cause me stress. Their father and I are divorced, and unfortunately, meaning well, he encouraged this. Therapy was a safe place for them.
A friend of mine sent a book that was also helpful, by two sisters named Abigail and Adrienne Ackerman, called “Our Mom has Cancer”. My daughter read it over and over.
What I did was hold on to our bedtime ritual no matter what else was going on. I have always been a working mom, so our bedtime was special. Each child had his or her own special songs. My son liked gentle nerve strokes on his back, and “one more shiny minute” (that meant two!). My daughter had different songs, and her own ritual.
During the long months of treatment, if nothing else I managed the bedtime ceremony. The two times I was too sick to do it were the worst part of the journey.
Now, three years later, I know they have been affected, but they continue to do well. They still see a therapist every so often. They are accustomed to me taking a rest in the afternoon if I need it. My daughter laughs now about calling me “baldy” during those hard days. Now, at 11, she is very kindhearted. My son is his old irascible self, and he still crawls in for a cuddle in the morning (don’t tell his friends!)
I think it is important to recognize that maybe we can’t give our children all the support they need while we are engaged in fighting our cancer. There are resources out there. So much of dealing with cancer is saying “yes” to help, whether just for us or for our families.
The goal is to survive to see our kids grow up. To do that we must take care of ourselves, and that includes accepting help to care for our children, both their little bodies and their precious spirits.
Yesterday, I had the loveliest afternoon and evening. I went and saw the Bodyworlds exhibit with my husband, my dear friend Susan, and new friend Kit. It was nothing less than amazing. Bodyworlds is an amazing display of the human body in movement, health and also in disease. The technology is plasticized human cadavers donated [...]
Yesterday, I had the loveliest afternoon and evening. I went and saw the Bodyworlds exhibit with my husband, my dear friend Susan, and new friend Kit. It was nothing less than amazing. Bodyworlds is an amazing display of the human body in movement, health and also in disease. The technology is plasticized human cadavers donated to science. They are beautifully and reverently displayed, and utterly fascinating. Interspersed with the specimens were elegant displays of relevant information. Susan and I are both massage therapists, so we were like little kids in a store full of chocolate, greeting the bones, muscles and nerves like old friends.
After the exhibit, we came home and watched a fascinating movie called “The Living Matrix”, about what they called “Informational Medicine”. The theory is that illness is scrambled information, and that by restoring the natural blueprint to the bodymind, health can be restored. It’s a complex topic too big to go into here, but the nugget that got me thinking was the discussion about the Placebo Effect. One doctor pointed out, if the placebo effect is documented to aid healing up to 30% of the time, why aren’t we using it?
In my case, I don’t think that belief itself changed anything about my disease. I think instead that the focus of my belief sent powerful messages to my body, which engaged my own healing response. I am deeply grateful that my doctors, and my mom, used their own Informational Medicine.
For whatever reason, I believed with all my heart that I would survive. I don’t know exactly why I did. The story I made up served me. I believed for myself that if I got the lesson, the teacher would leave and not return. I believed that what I was being asked to do was learn to really love myself, to open my own heart to me. I asked for any karma I had coming to make it’s way to me right then, in February of 2007. I decided to receive all that anyone wanted to give me. I used every tool I knew of to heal my whole life. This was and is my belief. I believe that staying on this path will keep me well.
What I did not know was that this story I was using to empower myself was fragile indeed. Any doctor could have deflated it easily, with one thoughtless comment or practical observation. The facts (the statistics) were not in my favor, the truth of which I was blissfully unaware. How did this happen?
It started with Dr. Borofsky. She did not tell me what she thought I had. She said that it was “very possibly” a cancer, and that we would know more when I received my full diagnosis. I was scared out of my mind. I asked her tearfully, “am I going to die?” Now there’s a silly, loaded question! Even bolder was her answer.
“No. No you’re not”. She said it with a firm shake of her head. I believed her. If she had lied, oh well, I wouldn’t be around to scold her for it! I believed her implicitly. I asked her about it later, and she laughed. She said that what she meant was,
“no, not now, not on my watch!” It was good enough for me.
When Dr. Brown told me my diagnosis, she did not express dismay when she said the words “Stage IIIC Inflammatory Breast Cancer”. It rolled off her lips like “it’s raining today, shall we eat inside?” When I asked for a prognosis, she said, “we’re optimistic”. That’s all I could get out of her.
Dr. Metkus wouldn’t give me statistics either. She said, “why do you want statistics? What good would they be? No one has ever studied Elizabeth Danu before.” My friend Flo told me that she had mentioned me to Dr. Metkus, and that the doctor had observed, “she’s a survivor”.
My mom totally censored the information she sent my way. The 25-50% survival rate for Inflammatory Breast Cancer never reached my ears. Instead, she sent me snippets of things that gave hope, and posts from long term survivors on the IBC support list.
My doctors, and the people who love me, conspired to keep me in the dark about what might frighten me, and they fed me what gave me strength and courage.
Never worry about giving someone “false hope”. No hope is false! There are exceptions to every statistical curve. This is why I read and re-read “Remarkable Recovery”. It was full of stories about people who disproved the statistics, and did what they knew would heal them. A basic principle that I learned years ago is, it’s true if it works!
My paradigm worked for me, and I am so grateful that the healers in my life supported my belief. This is the Placebo effect at work, deliberately.
This site is about Informational Medicine Power. Take what gives you strength, makes you laugh, brings hope, or whatever else you want, and disregard the rest. Reality is overrated!
Why do I sometimes embrace the pain of life without allowing myself the pleasure? When I was diagnosed, it had been 20 years since I had been on a stage. It had been longer still since I picked up a paint brush. I hadn’t taken a walk on the beach for months. Rediscovering these things [...]
Why do I sometimes embrace the pain of life without allowing myself the pleasure?
When I was diagnosed, it had been 20 years since I had been on a stage. It had been longer still since I picked up a paint brush. I hadn’t taken a walk on the beach for months. Rediscovering these things brought me back home to myself. In the weeks before my mastectomy, I painted my room purple, so I could bask in my favorite color while I recovered.
The day after surgery, I began a piece of art with a Sharpie. I thank my lucky stars that it was not my right side that was compromised!
Just after I began radiation treatments, I auditioned for the part of the White Witch in a local production of “Narnia”. I had very little energy, and I saved it for rehearsals. I worked out my cancer angst rampaging around and turning little creatures into stone, and cackling madly! Did I feel worse for it? No! It was SO MUCH FUN!
What’s the big deal about fun?
Pleasure and fun make me feel the thrill of being alive, and gratitude for it. Fun is exhilarating. Exhilaration means endorphins, the body’s own painkiller. It’s wonderful medicine.
Things that give us pleasure take us to that place where time stops, and we can become lost in what we’re doing, hypnotized, oblivious to pain or worry. When I’m doing mindless tasks that I don’t enjoy, the clock ticks away slowly, but at the end of the day I feel that time has slipped away between my fingers. When I am completely engrossed in something wonderful, every moment is timeless. I am utterly and completely in the present. This brain state is known to be a healing state.
I certainly felt that as I sought these experiences, I came back to a life I had forgotten I had, to joy that I had forgotten I could feel.
Where my life had felt like I was trying to climb out of quicksand, now it felt like my life was something worth fighting for.
Simple, physical pleasures can make pain fade into the background. When I was receiving chemotherapy, and my body hurt, I was blessed to receive a massage every week. I will never forget the generosity of my colleagues at Mills hospital who came week after week and gave me massage; Jim, Lee, Mike, and my dear friend Susan who came all the way from Pleasant Hill and gave me the comfort of touch. During the hour I received, the aches went away.
Cuddling with my children, reading them a story, or singing them a lullaby took my focus away from illness and brought it right into the stuff of life, right here, right now.
Even now, when the spectre of a life cut short is not so directly over my head, I notice that when I neglect these pleasures I don’t feel so well. I feel tense and stressed when I don’t make art, sing, or take a stroll on the beach once in awhile. When life feels like it’s all work and no fun, it’s time for an adjustment. Once I shift my priorities, I actually have more energy and am more productive.
I also believe that what is most satisfying is usually something of value that I can offer to the world. When each of us expresses most truly what’s unique to us, we find our niche, and the world is a better place for our being there.
What’s really good for me at the deepest level is a win-win for everyone in my world, and my cells know this.
My Caringbridge blog was good for me. I looked forward to blogging. When I stopped feeling that I had anything to write there, I slowly became susceptible to the blues. Picking up my blog again, in a new form, makes me happy.
What makes you happy?
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!
You can find all kinds of information on the web, and in your doctor’s office, about what chemicals you are being treated with and what they might do to you. Chemotherapy at first struck dread into me, thinking about what it would do to my body. I wanted to do the things I had always [...]
You can find all kinds of information on the web, and in your doctor’s office, about what chemicals you are being treated with and what they might do to you.
Chemotherapy at first struck dread into me, thinking about what it would do to my body. I wanted to do the things I had always done, to try to minimize the harm and keep my body in balance throughout, at least as much as I could.
Chemotherapy is a wild, crazy wave, and my job was to ride the crest of it until it broke. Certainly I wanted to protect my healthy cells, but I wanted those chemicals to knock the %*@!! out of the cancer that was threatening my life. It was a battle for control of my body. It was a game of chicken between those purple ewoks and wookies and the angry little bald man. My body was the stage for this drama. Never mind balance, that didn’t apply here!
I understood that uninterrupted treatment was the key to my survival. By the fourth infusion, I finally understood that to stay on that wave I had to be as comfortable as possible. Steroids with the infusion, ativan at night. Pain killers, anti nausea medicine, laxatives, stool softeners, all my normal bodily functions had to be slapped around to keep me on that wave. I had a vicious cancer, and one delayed treatment for whatever reason would give it a chance to bounce back.
When I finally understood that this was the way of it, my strategy became very clear. Stay on the crest of that wave, don’t fall off, support my body under the onslaught, and let every ounce of energy I had be harnessed to assist the treatment.
The first big breakthrough was, pain and discomfort leads to stress, which weakens the body more. By the fourth infusion I was taking all the meds they gave me, at the first hint that I might need them. The more comfortable I was, the more my body could use the energy I had to fight the beast.
I conserved my energy for the same reason. I did things I loved, like walking, improv, reading, puttering outside. Things that were an energy drain I declined, and people who were toxic to me I kept out of my space, sometimes with help from others.
I said yes constantly, as I have discussed in another post. When people wanted to pray, bring food, take care of my children, or tidy my home, I welcomed it all. I also said no, just as consistently, to anything that would use my precious, limited energy for something that was not important to me. Saying yes opened my heart. Saying no taught me to trust myself.
I used complementary therapies to minimize side effects, and to protect my healthy cells as much as I could. I used imagery to protect my heart, to watch the tumors shrink, to build white blood cells and hemoglobin. I never had to miss a treatment because of low blood counts.
Dr. Brown told me to “eat what looks good to you” and I did that. I also developed my once a day nutrition shake to make sure all the bases were covered.
I took advantage of every resource. My colleagues gave me massage weekly (I remain so grateful for this!), I received acupuncture, and I had a Healing Partner who provided Healing Touch for me every week for 6 months.
I wanted to be sure I was really showing up for all this. I wanted my whole being to know that I was engaged in my life, that I was passionate about it. I took advantage of the counseling that was available at Healing with Hope. I blogged like mad at Caringbridge, and celebrated life. I painted my room purple.
Do you have to do all this to weather the chemo storm?
No, not at all. Do it the way you do it. Just keep three things in mind, if they seem good to you.
1. Use all the medications they give you to be comfortable. This is not the time to be stoic! A comfortable body heals better and faster.
2. Do the things you really love with the energy you have. That way you actually get some.
3. Let people help. It blesses them just as much as it blesses you, if not even more.
If this is you right now, know that my thoughts are with you, and you will get through it!
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!
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- Elizabeth on Inflammatory Breast Cancer
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- Elizabeth on What to Know Before Your First Chemotherapy Session
- Sheila Warren on What to Know Before Your First Chemotherapy Session
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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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