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    Last night I had the most GLORIOUS sleep. I went to bed, read a little of something sort of interesting but not important or fast paced, and then my head hit the pillow. The next thing I knew it was morning, and I woke up right before my alarm.

    I can’t think of the last time that happened.

    I’ve heard that cancer survivors can have difficulty sleeping. I also know that menopause does that to people. Worry certainly does that to people, and I’ve been doing that.

    Last night some sort of magic happened, and I slept soundly and peacefully. Today it was a whole new world.

    Do you have any magic formula for reproducing this miracle? I’m all ears! Please share your sleep tricks in the comments below. I’m sure there has to be one or two that I haven’t heard yet!

    I sure hope I can repeat this miraculous feat tonight. I had a wonderfully productive day.

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    Today my daughter and my husband are on stage, while I am at work. They are in eTc’s production of HONK, which is a musical version of the Ugly Duckling story. My mom, my son and I are going to see the show on Saturday, which will be the last performance. I chaperoned last weekend, which meant chasing down little children and getting them into their costumes.

    I snuck out into the audience to watch my daughter in her big scene, and I was so proud! Her performance was polished, engaging, spot-on. Impressive even to a theatrical perfectionist like me. I heard similar feedback from others.

    I didn’t have a clue. She never practiced in front of me. Her comedic timing, her flawless British accent, and sweet right on pitch harmonies were a complete surprise to me.

    I wonder who it matters more for, me or her, that I was here to see it and be so proud? Probably her.

    If I had left the planet in 2007 or 2008, maybe I would have seen, but I wouldn’t have been able to tell her how proud I was of her. Because I am here, she knows.

    I feel truly blessed today.

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    Have you ever thought about what happens to small children when a parent has cancer? What about a sister or a brother?

    I know what happens, and it’s heartbreaking. My children are still carrying the scars of what they went through with me. When a child watches a parent fight cancer, life as she knows it is over. Our children are the casualties of our battles with life threatening illness, and support for them is sadly lacking.

    I want to change this! It’s not even something that would be hard to do, but it is urgently needed.

    What I’m talking about is a play group for children whose parents are facing life-threatening illness. What it would take is a place, a child therapist, some grownups who care, some art supplies and toys, and children. For kids, other kids are the most important part.

    What happens to a child when mommy, daddy, sister or brother is sick?

    First of all, complete disruption of established routines, which every child needs. Suddenly the house is full of people who seem very concerned. Mommy or Daddy can’t take care of them as usual, so others come in to care for them.

    If people are bringing meals, the usual food and eating rituals are disrupted.

    Children are frightened, but everyone is so absorbed in the care of the ill parent or sibling that these fears may go unacknowledged. Suddenly there is very little attention available for them. If their primary caretaker is ill, the abandonment and fear is terrible.

    They are afraid, but they know that everybody is worried so they may keep their fears and concerns to themselves.

    When I was fighting my cancer, I got my children into therapy. It wasn’t nearly enough but it helped. They both wanted me desperately, but I was busy fighting my disease, and often too ill to care for them. Others had to help me, but my children wanted me. I held onto the nightly bedtime ritual to try to maintain some kind of normalcy. I only missed bedtime lullabyes three times. If I did nothing else, I did that.

    Several things stand out in my memory of this time, about my children.

    First, a kind teacher at my children’s school took them under her wing and taught them to knit. My second and fourth grader gave up their recesses and lunch breaks to knit me a pink hat and slippers. I asked my daughter what that meant to her. She told me that it showed her that somebody cared. Other than Mrs. Tanamachi’s kindness, my daughter felt invisible. She felt that she was in another world, one that no one understood.

    I know that feeling. When my father was dying, I remember a brilliant Seattle day when the sun was bright, the water sparkling, and the air fresh. It was all wrong. My father was dying. My girl described this same feeling to me. How can everybody go about their business when her mommy was sick and could die?

    At this same school, two mean twins taunted my daughter that her mama was going to die. Kids can be so cruel.

    There was a child in my daughter’s class who had survived leukemia. His mother told me that her son preferred to be with my daughter, because she “gets him”. There was some kind of well of compassion that my daughter had, that helped this boy.

    What could be more therapeutic for these suffering children than other children?

    If you’ve ever been on Planet Cancer, you know that it feels as if you are alone in a strange world. Our children feel this even more keenly. Just having children in a space together would be hugely life-changing for them.

    What I want to create is a space for children to be together and know that they are not alone. I believe that every facility that treats life threatening illness should offer this component. My first thought was for children who have loved ones facing cancer, but other illnesses have similar impact. It wouldn’t be difficult. Someone just has to believe it’s important enough.

    Will you help? I don’t want money or your signature on a petition, or anything like that. What I want is for you to pass the word to anyone you think could help make this happen.

    This week I am going to discuss this project with my local cancer care facilities. What I am committed to is that someone who can make it happen will take it on.

    If my children had been able to get this kind of support, they would have experienced being supported through a rough time instead of it being the most terrifying time of their lives.

    If you have any ideas, resources, or suggestions to help me with this project, please contact me at elizabethdanu@rocketmail.com. We can make an impact on a child’s life that will last a lifetime.

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    I’ve been pondering the meaning of Right Livelihood, because I have been gleefully absorbed in it.

    I come home from a day’s work wiped out, but satisfied. I had the thought recently that if I were to suddenly have a windfall I wouldn’t really change much. I’d probably take more vacations and spoil my children a little more. I wouldn’t mind owning my home instead of renting it. I’d do a few more musicals. But when it comes to what I do every day? I wouldn’t change a thing.

    I have added more time at the hospital, now working on another campus providing massage to children who are receiving chemotherapy. I adore these kids. The job is a dream. All the kids are in close proximity to each other so I don’t have to wander far and wide to see them.

    I love my own lil’ stinkers, who put gray hair on my head and drive me nuts. My son calls me “Your Motherness” and asks, “can I help you?” when I appear dismayed, usually because he is blowing off his homework or his room should be condemned.

    My daughter has a new title for me, and it’s usually loud.

    “Madration!”

    Usually my taxi services are required. Currently my dear husband is taking on some of that, since he and Miss Peach are doing a musical together. I being part of the fun but I have made use of the quiet weekends. Maybe the next one.

    When I get in my groove at home writing or doing something else, I don’t usually feel enthused about interrupting to go teach drama to the kids at the local elementary school, but when I get there they swarm me. Then they make me laugh. What could be better?

    What I do isn’t everybody’s thing, but it’s mine. I spend my days making a difference for children, and some grownups too. My private massage practice is growing and it is joy to be cause for someone having their brain work properly because they are free of pain pills.

    Some days break my heart. Seeing a child deteriorate over a period of months is painful. Being able to ease his pain is unspeakably sweet.

    Other times I can only laugh. The best compliment I have ever received was from a 16 year old kid at the hospital, there because of a freak accident. When I gave him the feedback form to fill out, he handed it to his mom and said,

    “She has the most RIGHTEOUSLY exTRAVAGANT hands EVER!”

    I do a lot of energy work in the pediatric unit. I was thrown for a loop on Thursday when a thoughtful young rascal receiving chemotherapy said to me,

    “All the nurses have cold hands. Why are yours hot?” I told him that my hands knew that they were touching people so they knew they were supposed to get warm. I told him that when I’ve been at the computer they get cold. This is actually true.

    There’s an awful lot of pressure in this world to be obsessed with discontent. There’s always something more to want. Our whole culture is built around wanting more, and look what a mess we’re in! Not only does the economy stink, but so many of us are unhappy.

    James Taylor had the right idea. In one of his songs, he says:

    The secret of life is enjoying the passage of time.  Anyone can do it, there’s nothing to it!”

    A grand concept in a simple little package.

    What am I enjoying right now?  An achy 50 year old body that worked hard today and drove too far. My eyes are tired from dealing with contact lenses, which my twelve year old daughter has mastered effortlessly.  I’d love to go to bed but I’d better stretch first or I’ll wake up tied in knots.

    I’m entering into a period of milestones.  The five year anniversary of my diagnosis.  In June, the five year anniversary of my last major chemotherapy and the beginning of the return of hair.  In October, five years from my last radiation treatment.  Next May, the five year anniversary of my last Herceptin infusion.

    Right now I’m creaky, tired, sometimes grumpy, often amused, beleaguered by teenagers and tearing my hair out while celebrating how long it is, left arm a little heavy but oh well, wishing my son would do his homework…..etc……

    and I’m still here and enjoying the hell out of the ride.

     

     

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    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.

    The C word…

    Cancer, or cure? I have passed the five year mark, and my oncologist told me two years ago when she became my doc that she thought I was cured. “and, we’re keeping a close eye on you” she said.

    Technically, there is no cure for breast cancer and what I am is NED. I am in a remission that I hope will give me a lifetime, a normal lifetime if there is such a thing. I have already had the equivalent of the lifetimes of my friends Susan and Rachel. They didn’t make it to 40, but they did so much with their lives. To my new way of thinking, what I could have before me is a second lifetime.

    I am 50 years old, and I could live another 40-50 years if I am blessed and take care of this gift I have, my healthy, cancer-free body.

    There. I said it. Cancer-free. Have I jinxed myself? Do I dare say that what I write about is life after Inflammatory Breast Cancer?

    Do I believe in a kindly or cruel universe? Many ancient cultures believed that if you were too fortunate the gods would be jealous and put you in your place. I think I believe in a kindly Source who has held my hand all this time and has plans for me.

    Love or fear, which will it be?

    Today my life is richer than it ever has been. I live a designed life, that is becoming more and more the canvas that I paint on. I have the experience of facing cancer to thank for that, but truly cancer sucks. It does. I wouldn’t wish is on anyone.

    I don’t really get it. I’ll just continue painting.

     

    Back to the mat, this time to avoid having to take even half an Ambien!

    I’ve been reading the headlines with dread, the ones about sleeping pills causing death. A new study is all over the internet, terrifying millions of insomniacs, myself included. Fortunately I was able to stick with the subject long enough to investigate further, and this sleeping pill study everyone is upset about is seriously flawed. While the study authors controlled for some variables, they failed to establish that the link between sleeping pills and early death is actually causal. It could be that whatever caused the study participants to be insomniac in the first place was what predisposed them to dying prematurely.

    All the same, yoga is cheap, has no side effects, and best of all, helps me sleep. So yesterday I got started and last night I slept very well.

    I know that yoga is essential as well for me to manage my lymphedema. I am writing a lot these days, hence the somewhat sad neglect of this blog…been busy gearing up for the designed life I’ve been envisioning since I went through treatment five years ago now. That’s right, it’s been five years! I was diagnosed in February of 2007. I’m one of the lucky ones, and I don’t forget it.

    I’m almost afraid to call my blog “life after cancer” or something similar, for fear that I’ll jinx my good fortune. I know that’s silly. If the beast were to bite me again I could always call it something else. Right now, though, cancer is in the past. I am enjoying my work at the Children’s hospital, and some regular maintenance is keeping my arm from swelling up. I am starting to add more private clients, who just magically appeared after I said I was ready. I have been very busy writing for Yahoo, both on Voices and for Yahoo News. I actually get paid to be opinionated! I love that! Here are some links if you want to check it out:

    Complementary and Traditional Treatment Together to Beat Cancer
    What Your Insomnia May Be Costing You

    It’s the writing that makes my arm the most unhappy. All of it is really fun, and I have to really be committed to self care to make it doable. The yoga really helps.

    Oh yeah, there’s the mom job too. My offspring are now as tall as I am, and I am at the endless taxi driver stage.

    Life is grand.

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    I had forgotten how nice “no agenda” days are. Happy Presidents Day!

    I got up when I wanted to, and pretty much have done what I wanted. I had three teenage boys here, so I made them pancakes this morning, but not until I’d had my coffee. I’ve been puttering in “my studio”, which began as a shed that my husband built for me last year. I consider it my own little house, as well as my ongoing art project. Soon it will be an office.

    Nearly five years ago, when I was diagnosed with Inflammatory Breast Cancer, I automatically qualified for Disability. because I was either expected to die or to remain very sick for a long time. I didn’t die, and now, nearly five years later, aside from a slightly temperamental left arm, I’m not sick. My memory is even improving, dramatically in this last few months. My disability is ending, and I’m gearing up to go back to work in earnest. I’m telling myself that I can handle it, that I know how to manage myself so I don’t burn out. Days like today are good.

    I’ve been able to work part time and pace myself, as well as enjoy being a mom. I still have my rough days. All in all, I can’t complain. I’m fortunate that I have a skill that I can use the way it works for me.

    My days of full time massage therapy are over. An eight hour day would make my arm swell up like a tree trunk. I have been delighted to discover that I can tolerate working on kids really well, and I can do one or two of my good ol’ get in there and get it done massages in a day, if I elevate my arm afterwards. I’m so glad I still get to do that. It’s been 20 years doing this, and I love my work. I can do this and still do my mom thing. I’m lucky.

    I got my business license from the city, and starting in March I’m open for business. Woo-Hoo!

    Five years on Wednesday. Wow. Moving on with my life. Rock’n'roll.

     

    Last week was rough.

    We lost Susan Niebur on Monday, then on Tuesday Rachel Moro left us. It was a weepy week.

    And…..

    People who don’t like my writing on Yahoo occasionally can’t restrain themselves, and find me here to write their comments. I don’t think they even read my blog, so announcing that I spam these people doesn’t even help! Aaaaargh…

    I had a few things to say on Yahoo News about the Komen/Planned Parenthood mess. It was particularly irritating in the face of what’s really going on in the world of breast cancer. We haven’t won. Two of my friends died last week, and two others have lost their hard-won remissions. AND crazy right-wing nuts write to me on my website to tell me to shut up.

    NOT! I will not shut up. I will not desist, I will not be polite. I will not give up until I stop losing my friends to breast cancer.

     

    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 Love Fest

    Dr. Susan Niebur

    Mothers with Cancer

    communities/the washington times

    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.

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