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    When I decided that I was “not —-ing leaving the planet” because I was going to raise my kids, I had no idea what that would wet hugactually look like.  It didn’t matter.  It was a gift to anticipate, a package to open when the time was right, and I was determined to be around to open it.  I was mostly concerned about my children growing up without me.  What I didn’t think about at the time, but am thoroughly enjoying now, is what an absolute blast they are.  Teenagers are crazy and wonderful.  My mom refers to their “demented energy”.  Yes!   As long as I  maintain my sense of humor, I ride the tougher waves relatively easily.  I find that true of most things!

    You’ve probably heard of the ALS ice bucket challenge.  I wish I’d thought of it for IBC!  Anyway, I’m glad.  I had to have my dunking, but I didn’t mind.  The picture to the right is of my daughter, my son, and her friend.  They were nominated for the challenge, and recruited my son to dump the ice water on their heads.  After he did his brotherly duty, my daughter’s friend shouted “Hug!” and they chased him down.

    They tickle my funny bone and exasperate me daily.  My son thinks “school is stupid” and tested out early.  My daughter has decided she’s going to Columbia University (now I’m sweating bullets) and after years of constant squabbling, they are good friends.

    When I was fighting cancer, I didn’t know entirely what I was fighting for.  I was fighting for the surprise, for the unopened gift I didn’t want to miss out on.  If you are currently in the fight, whether a cancer, depression, or just a rotten day, remember that none of us can predict how good it can be!  So, if it sucks right now, take heart.  There is no limit to how much better it can get.

    If you want to see me get dunked, follow the link to my facebook page.  She who nominated “Mama Danu” (Emily…an exceptionally good kid) thoroughly enjoyed sopping me when I started to run off at the mouth.  Her mom and my daughter are laughing in the background.

    I love being “that” mom!

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    I am amazed over and over again by how the things that come out of my mouth for the benefit of others are invariably for me also.  I had a moving conversation with a client last week, which left both of us breathless.  She was deeply stressed and had been coping with far too many overwhelming events in her life.  I had shared a bit about what I learned from facing cancer that I thought might be helpful.  She asked me how I coped with the fear of the cancer coming back.

    I surprised myself by telling her that dying doesn’t scare me.  It’s dying without completing the urgent demands of my soul that scares me.  When I have accomplished what matters to me in this life, I can go.  I do not fear dying.  I was with my father when he died of cancer at age 44.  I know without question that death is not the end.  I know what a body looks like with nobody in it, and it’s just a discarded shell.

    On the day my father died, I felt him all around me.  I felt his love.  I felt the power of who he really was, as the Big Him.  I was cradled in peace of a kind I have never experienced since.  From that day, I have no doubt that I will not cease to exist the day I die.

    I needed to be reminded of what I have yet to do.  I have been off course.

    After that conversation, I took a little time the next day to revisit what was imperative for me.  I am going to be fearless and share.  Doing this will establish between you and me that I am committed to keeping this at the forefront of my mind and my days, so I can leave when the time comes with no regrets.

    The Six Imperatives:

    1.  I need to write.  I have been told many times that I have a book to write.  I know I have a story to tell.  I must tell it.

    2.  I need to sing.

    3.  I need to finish raising my children.  They were 7 and 9 when I was diagnosed.  I got to get them this far.  I’m not done yet.

    4.  I need to leave no unfinished business.  That means that the clutter in my house and garage are not left for my kids to clean up, among other things.

    5.  I need to see the world.  I have always wanted to do that!  Somehow I must make it happen.

    6.  I need to master the art of living from my spirit and not my limited ego.  I have had friends joke that I want to be Mother Theresa.  While I don’t feel called to go work in the slums of Calcutta, I do aspire to have the kind of trust that she did.  Love takes risks, fear lives in safety.  I aspire to live boldly.

    These six agreements are between me and my soul.  The people who are in my life, who I love, are people I trust to support these imperatives.  I have the most wonderful friends and the dearest husband in the world.

    When I got sick, I hadn’t been on a stage in 20 years. Now I am singing in a quartet, and we rehearse every Tuesday. I don’t know how I survived without this.  I discovered how much I loved to write when I started my Caringbridge blog.  It started as a way to keep people informed, and it became my lifeline.  When I emerged from treatment, everything was beautiful to me.  The world sparkled.  I was in a state of bliss much of the time, continually grateful to be alive, expecting the miraculous.  I told myself I would not lose this feeling, but over time I did.

    I will not name my client to protect her privacy, but if you are reading this now you know who you are.  Thank you, thank you!

    Helen Keller said, “Life is a daring adventure or it is nothing at all”.  I will not fall asleep and miss the adventure!

    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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    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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    I honestly love happy racket.

    Right now my heart-daughter and grandbaby are asleep downstairs, my daughter is on my bed harassing me instead of making the coffee I want, but she will eventually…

    My son’s best friend, my extra kid, poked his rascally head in my door this morning to wish me happy birthday. We’re all tired and silly, because last night was opening night of “Annie Warbucks”. Tom plays the stuffy butler, Miss Peach a rascally orphan, HD (heart daughter) helped with the stage crew, and the baby (“Bubbeeee…”)kept me company as I herded children (as a chaperone) backstage. It was a little odd not being on the stage, but I have enjoyed the long quiet afternoons when Tom and Miss Peach were at rehearsal. Tom and Peach are in the Big Apple cast, so they have two more shows to shine in their big parts.

    Today I am taking the day off, because it has always been my habit on my birthday to take some time for reflection. The last four birthdays this has been especially so. I am always so overwhelmed with gratitude for another year. I am keenly aware of how fortunate I am. This awareness is bittersweet today, because this last week I lost another IBC blogsister, Ashley Warrior Mom. Her IBC battle lasted two years. Two other blogsisters are fighting like hell. I know that each day I get to spend here on this delicious planet is a gift, and each year I get to have a birthday I think about how to make the most of the year coming.

    One of the little things that makes me happy is that I have never had a bald birthday. I know that may sound like a little thing, but somehow it makes me feel like I got away with something. For my 45th birthday I had hair, and was blissfully ignorant of the thief that had snuck into my house and was preparing to wreak havoc. By the time my 46th birthday rolled around, my hair was back, thick and wavy, I was feeling much better, the herceptin was tolerable and I was NED. I had hope, and I could see a future. I guess each birthday that passes now is anchored in to that triumphant time.

    What’s ahead? Enjoying my children, more time at Lucille Packard, more writing, perhaps more theater (when another villain part comes up for a soprano I’m all over it), gratitude, more advocacy, scrapping for the end of breast cancer by 2020. My beautiful daughter is twelve. I want her and her beautiful friends to grow up in a world without the fear of breast cancer.

    Oooh, Bubbee is up. Time to be Grandmama…

    My Mom is a writer. She just published her third book of poetry. Go Mom!

    My sister is a writer. She published a short story once, but unless she publishes, she doesn’t show us anything!

    I discovered that I was a writer on my Caringbridge blog. I guess that’s another unexpected gift that cancer gave me. For a long time, I thought that writing was Mom and Emily’s gig, not mine. I had a long chat with my mom about it. She told me that even my brother Paul has published an editorial in the local paper! Who knew? I already knew he is a fine musician. I guess I come from a talented family!

    So, I’m embracing this new calling of mine. I have been blogging for awhile over at Everyday Health, and recently I got an e-mail from my contact there that I would be reporting directly to the editors, because (drum roll….) they like my writing!

    I’ve sorta been quiet about it. It’s my own private thing, or has been. When I started my blog at Caringbridge, I did it to help me get through the toughest time of my life. It was for me. When I started getting comments from people I had never met, it felt wonderful to know that what was so satisfying for me to write had value for someone else. Still, I would not call myself a writer.

    Now, I am summoning my courage to write “on purpose”, and try to get good at it.

    Will you tell me what you think? Give me some feedback?

    I just published an article on Associated Content. It was an assignment. I thought it would be fun, so I took it and did my best. Will you follow the link and take a look? If you like it, will you become a fan? If you like it a lot, will you tell your friends?

    In the meantime I will (as Jo said, in “Little Women”, one of my favorite books of all time) up and take another.

    Onward!

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    Fragile, Handle with Care, NOT!

    What a glorious thing to go backpacking and discover that the post-cancer me is not as fragile and weak as I thought! I guess it’s the fond memories of my childhood that translates into the satisfaction of “being a trooper”, which was my Dad’s way of describing someone who rolls with the punches. Do you remember getting so grubby and scraped up that it took a long shower and lots of scrubbing to determine what was dirt and what was scrapes and bruises? The delicious feeling of a well earned sunburn that brings to mind a satisfying day outside? Maybe I’m nuts, but the feeling of being a little beat up but happy makes me feel sturdy and alive.

    I met my dear friend Susan at her home on Friday, and we were immediately derailed by a late bus (to bring my godson Victor home). Nothing daunted, we drove to fetch him on the way. We were quite delayed then getting to our destination, but we were determined to get up into the mountains that very night, dark or no. Fortunately Susan’s brother Frank, nephew Ben, and another friend (new brother) Paul were already there.

    I had some trepidation about this trip. What if… what if….. what if I overwork my chemo-d heart? What if my arm swells up? What if we get lost? What if my brainfog makes me forget something important? Blah blah blah, off my brain went, but my tendency to blast forward no matter what won out, and I’m so glad.

    When I put the backpack on, I was oh, so discouraged. I was out of breath within the first 10 yards, no kidding. The straps cut into my shoulders. My heart was racing. I needed the trek pole that Susan had provided. We were at 6,500 feet, and I was not ready.

    Nonetheless, I know the only way out is through, so one foot in front of the other with frequent rests ultimately got us there. And was it ever worth it! The trek there was beautiful. It was only 3 miles, not too tough terrain, only a couple of hills, so for all my woes it was manageable.

    We spent Friday and Saturday night there. We had one whole day of nothing at all, just hanging out, visiting, exploring the magic of the place. Susan calls it Camp Medicine Wheel because there is a mountain at the compass points to the West, North and East. We entered camp roughly from the south. We camped next to a river, which lulled us to sleep each night. On Saturday, a thunder storm surrounded us on three sides, while the sky above us remained clear. It was nothing less than heaven.

    I did make a couple of relevant discoveries for cancer survivors who backpack. I was diligent about my “Alaska perfume” (bug spray), but my left arm was covered by a sleeve all of the time so I didn’t spray it. When I went to bed, I took the sleeve off. Alas, forgot to spray! After that, my friends called me Lumpy.

    It was so gratifying to hike back to the trail head with plenty of energy, having become accustomed to the altitude (and having eaten a lot of the food we carried up!), with a chipped tooth, lumpy arm, burns on both hands, lots of sunburn and bruises, and an ear-to-ear grin. No, not fragile. What a relief!

    Sunday ended perfectly, with a stop in Angel’s Camp to look at rocks (there’s an unbelievable store there) and a chance to drum. We actually stumbled upon a weekly open drum circle.

    I wonder if other survivors doubt their resilience after being beat up by cancer and the treatments we have to take to conquer it. Anybody? What about folks still in treatment?

    I know that when I was on chemotherapy it felt good to push myself a little, to walk to my radiation treatments, to do yoga, to find the edge. I had just forgotten. This weekend was a much needed, very therapeutic reminder.

    Planning the next one….

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    There’s still time to catch the show if you’re in the Bay Area! This coming weekend is the end. I’ve had a great time, and I’m glad to get my weekends and Monday nights back. All the same, I am going to enjoy every moment on stage and every blissful note I get to sing for the next four performances.

    Tom will be The Wiz one more time, on Saturday. Check out the Bay Area e.T.c. website if you want to see some really fun theater and a lot of really adorable kids!

    Tech week was insane, as it always is. Nine days in a row in the theater with late nights and life as usual. The house becomes a wreck, everybody gets cranky, and we hear songs in our heads in the middle of the night. I used to worry about the stress, the lack of sleep, forgetting my vitamins and my vegetables. Now I have come to the conclusion that having my spirit hum is every bit as good for me as some yoga or a green drink! When I sing, every cell in my body is joyful. That just has to be good for a person!

    So, on with the show, and back to normal on Monday.

    I saw my oncologist a couple of weeks ago and I feel very reassured. No causes for concern whatsoever.

    And the request on the right? I am going to D.C., and I am so stoked! My scholarship covers registration and lodging, but not meals and travel. So far I have received donations to cover half my airline ticket, for which I am so grateful! I didn’t have it to spend, but I spent it anyway because I have to go! My ticket is purchased on faith, and I still have to cover meals and other expenses. If 60 people donate $10.00 I’ll be there. Or, 120 people at $5.00. Thank you from the bottom of my heart to those who already have helped! I will report in depth on what I learn, and you can bet I’m going to use every bit of it.

    Now to organize my bizillion costumes for tomorrow!

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    Like the conscience in old cartoons, My Own Death sits on my shoulder, reminding me to pay attention and treasure my life.

    I was noodling around this evening as I often do, looking for cool juicy stuff on the internet, and my meanderings brought me to an article written by a Palliative Care nurse. She writes about the common regrets she hears from the dying. I was deeply moved by the article, because what happened to me is that I got a second chance, so every regret that she listed was a change I had the opportunity to make in my life.

    Everyone who faces life threatening illness and survives gets a second chance if they choose. I am so grateful that my second chance came while I was still young enough to have more years to enjoy my children, and to follow the passions that I had forgotten on the back burner for so many years.

    The little annoyances and aches and pains that make me afraid are the reminders of my commitment to myself. None of us knows how long we have. Am I doing what I want to be doing, what matters most to me with each day that I have?

    Susan said in her blog, “please don’t pity me. I have work to do”. I am certain that the passion she has for this work of the heart that she does will keep her alive. I feel deeply that my passions keep me well, and feeding them is a smart survival program.

    Today I joined my daughter and my husband for the audition workshop for “The Wiz”, the musical that Bay Area ETC is doing this spring. Part of me thinks I don’t have time, and that I have other important things to do. This article was a timely reminder that doing what I love is the most important thing I can do, and the fact that I get to do it with my sweet family makes it all the more ridiculous not to do it. So, this week I’ll be warming up the pipes, practicing my cackle and hoping the director can see my diabolical side!

    go here to be reminded.

    Today was such a good day.

    In the back of my mind, when I was very sick from the treatments that I was banking on to save my life, I had the thought that at least I would better understand the patients I work with after I get well! Maybe I take this silver lining thing just a bit too far, but it works for me. I have heard more than once that people who find meaning in their illness tend to do better in the long run. I have quite a story I made up about mine, and just because I may have made it up doesn’t mean it isn’t true!

    Years ago, I learned a principle from shamans:
    “Effectiveness is a measure of truth”. This is a fancy way of saying it’s true if it works!

    The meaning that I attached to my cancer was that I was going deeper into my own healing journey so that I could be of greater help and service to others. My cancer gave me the opportunity to clarify what is important to me, and my ability to tolerate more suffering than I ever thought I could taught me that I’m stronger than I ever thought I was.

    I learned that expressing my creativity and seeking and making beauty in this world is good for my health, and the love of my friends and family taught me what a difference love and care makes to all of us.

    Today I was blessed to walk into a room where an adolescent girl was moaning in distress, and hyperventilating because she was so scared. I was blessed to walk in there because I understood. After I spent a half hour with her she was calm and breathing normally. Her mother appreciated it so much! Every one of my massage therapist colleagues could have made her feel better. Being the one to do it today was a blessing to me because understanding her fear and her suffering made the experience richer for me. I appreciated perhaps more deeply what an impact I had been able to make.

    I am blathering. How to express the inexpressible? How to give words to the satisfaction of giving comfort after having needed comfort deeply? Now I understand better what my friends received from tending to me, while I feel also that I am deeply in their debt.

    I do remember what a ray of hope it was to have someone speak to me who had been through the same ordeal I was facing. Remembering this, I shared with a fuzzy headed young man recovering from a stem cell transplant that I had faced cancer. He was wildly curious about it. His mother was too. She was especially impressed by the thick knot of hair that I had in a gazillion clips to keep it out of my way.

    I keep my hair long now, and it’s still growing. I do this because every inch is more distance from my diagnosis, and is representative of the length of my survival. It also has meaning attached to it, given by me. I had a vision once, when my dear friend Deborah was doing her healing work with me, of myself strong, sinewy, older, more wrinkled, with long brownish hair streaked with gray. I decided that this was prophetic. I take comfort in this vision as my hair grows. I am going to be an old, strong lady with lots of hair, full of gray ones that I earned. At least I choose to believe this, and act as if.

    As Jean says, acting as if I have control while accepting that I do not.

    One thing I do have control of is the story I embrace as my story, and the meaning I attach to it.

    Today my story is one of blessings and great healing.

    And the day’s end? Painting my daughter’s nails bright pink. Life is grand!

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