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    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.

    Blessings,

    Elizabeth

     

    (Originally posted on Yahoo Voices, 2012)

    Musings of a One-Breasted Goddess

    I’ve been a uniboober for nearly five glorious post cancer years, and I know that I won’t change it. How can I know?

    I appreciate so much that if a woman wants reconstruction she can have it, and insurance will cover it. That was not always the case, and that’s just not kind. Every woman who loses a breast should be able to do what she needs to do to recover and feel whole.

    The reason that I will not reconstruct is that right now I am whole. I am missing one appendage. I have sensation and movement in my whole body, and my pectoralis muscle is intact. I don’t have any foreign objects in my body. That to me is whole.

    It doesn’t make sense to me to chop and numb other parts to give me back a breast, one that isn’t even like the one I have. My new breast would not have sensation, would not feel or look the same, would not respond to a lover’s touch. Would I ever be satisfied with this?

    Maybe if it could be a real breast, I would be satisfied to lose sensation in my belly, have my skin stretched, distort my pectoralis muscle so that it could not move freely, and to re-injure my entire left side and once again lose sensation to my elbow, across my back, into my neck, and across my chest. Maybe it would be worth three separate surgeries, sacrificing pieces of my beautiful, sensate muscles, the risk of infection, scarring that disfigures the new breast, tampering with the healthy breast, the risk of silicone leaking into my system, and the further trauma to my body that could leave me vulnerable a cancer recurrence.

    Since any new breast I would get would not be the real thing, why would I want one?

    I understand that it would be convenient to never have to search for my prosthesis if I misplace it. I would have cleavage, which I do miss a little. Perhaps I would feel less fearful of a lover being put off by the scar across my chest. Fortunately I understand that I am still a woman without cleavage, and my partner loves both sides of my chest.

    What doesn’t make sense to me is that my journey and recovery has been all about reclaiming the parts of me that were lost. If I want no part of my heart and spirit to be numb, if I want to feel everything, what sense does it make to cut off sensation and movement from large areas of my body? I want to feel it all, enjoy it all, be it all, body, mind and spirit.

    And, can a deeper healing come from acceptance?

    Maybe providing the new appendage makes it possible to not feel the pain. However, I believe that true healing means to feel the pain, let it go, and claim another part, the part that was numb or hurt, until I feel all of me. I grieve for my beautiful breast that nursed my babies, quickened at my lover’s touch, and is gone forever. I feel the ache, and I feel my chest, my belly, my heart. I move my body joyfully and with gratitude.

    I think every woman must do what feels right to her, and I believe that every woman should be encouraged to think it through. These days it is assumed that every woman who loses a breast will reconstruct. What isn’t discussed at length are the disadvantages and the risks. Nearly one third of all reconstruction surgeries will have some sort of complication, or less than ideal outcome.

    I miss low cut dresses, shelf bras, and sexy matching underwear, but not as much as I thought I would.

     

     

    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!

    Every year as October approaches, I feel the thrill of autumn and the dread of Pinktober.

    It’s not that I don’t value all the work that goes into raising funds for breast cancer awareness and research.  I won’t bore you with yet another rant on this topic!  Anyone who has checked into this blog periodically knows how irate Pinkwashing and retail opportunism in the name of charity makes me.

    The fact is, I always have mixed feelings during this month.  I am thrilled to be alive, and sad for my sisters who aren’t.  It is annoying and inconvenient to be constantly reminded of breast cancer when most of the time I don’t think about it too much any more.  It is not the center of my world, and that’s how we all want it.  For women who face breast cancer, for a long time we can hardly think of anything else.  For the unfortunate ones who have disease progression instead of successful first treatment, it is always top of mind.  For women who have recurrences it is top of mind.  For those of us fortunate enough to be NED, we can blessedly enjoy a day, a week, or a month without thinking about breast cancer.

    Not so during October.  My daughter put it succinctly.  “Most of the time I don’t have to remember that my mom almost died!”

    If there is anything I can accomplish during this month, it is to gently and persistently tell the true story of breast cancer, so people like my mom who are terrified for loved ones don’t hear “Breast cancer?  Don’t worry, she’ll be fine.  They cure that now.”.  That was pretty tough for her to hear while I battled a disease that statistically was more likely to kill me than not.  It makes for a lonely journey.

    I am relieved that I don’t have to deal with the clerks at my local Safeway when I opt out of the “donate to breast cancer” option as I check out my groceries.  I don’t participate because last year I asked a clerk where that money went, she had no idea.  Neither did the manager.

    I donate year round, to organizations that give money to funding research, so we can have a world where my daughter doesn’t have to be afraid.

    Last week, one of my massage therapy clients was diagnosed with breast cancer.  She is terrified, as we all are when it happens to us.  I suspect that October will be a little extra rough for her in years to come.

    I’m so glad November is around the corner!  My birthday is in a few days.  I’m so glad it is not mixed in with Pinktober!  I can still love autumn when November comes.  I’ll be 52.  Damn pleased to be 52!  When I was 45 I wasn’t sure at all that it would happen.

    As the years pass, I am embracing who I have always been, a wellness professional.  For awhile I almost felt that I couldn’t claim that anymore, because I had faced cancer.  I, who was the picture of health and good habits…how could it be?  I know so much more now.

    Now I know that no one is exempt, no matter how “right” they do everything.  I am true to my profession because I used everything I know to beat it.

    You can check out my new website here.  I will never stop caring about the women who face breast cancer, or the people who face any cancer.  I see it every week when I go to work at the hospital.  I see it in the mirror when I look at my chest.  And, I am committed more than ever to health and healing in the forms I know best.

    Happy November!

    Well, here it is. Breast Cancer Awareness Month. Fortunately I am very, very busy, rehearsing for Narnia. Yes, I am the White Witch again! Five years ago, I was rehearsing. My daughter was 7. Now she’s 13, and playing the part of Susan. My husband, who I had just met in 2007, is playing Father Christmas. Five years ago I was a lot skinnier. My husband says I was scrawny. I was sporting the Annie Lennox look.

    Breast Cancer Awareness month is hard. While I so appreciate the funds that are raised for research, I detest the sea of pink and the pink labels on things so people will buy. It’s the good and the greedy all mixed together. My daughter confessed that she hates it as well. All during the month of October, she is reminded that she could have lost her mother. Two women on my support list announced that they are stopping treatment this week. It’s hard.

    All the dancing, writing, driving, working, has made my muscles sore. I am sore on my right side, and I noticed it just below my ribcage on the right side. I began to worry about liver mets. That happens every so often. An ache or a zing of some kind, and I worry. Someone on the list had a recurrence 6 years out. I don’t like hearing those stories.

    I stretch, I take care of myself, I watch the aches and pains, but mostly right now I’m having a blast. It’s family theater. The cuteness factor is extremely high, with little woodland fairies, animals, and cruelies, who are the witch’s minions. I have the most delightful little dwarf, my personal henchman, a ten year old named Amy. The adults in the show are there to do something magical with their kids. I appreciate all of them so much!

    If you want to see some great theater (really! We have fabulous talent directing this year), go to www.bayareaetc.org and get tickets to see the “Wardrobe” cast. We perform Friday night November 2, Sunday Matinee on the 4th, and Saturday November 10.

    When I started this blog, I came to know several other survivors in the blogospere. It is painful to me this October that they are all gone, all but one. At least the ones I knew well. I know it’s not because none of us survive. I know for myself that moving away from life being about cancer and into the next chapter tempts us to forget that people need to know we’re here. Many who make it get quieter, as life resumes. I have done that many times.

    For those at the beginning, know that I am one of many. It has been over five years. I’m still here. At the moment, cackling madly, turning little children to stone, singing fantastic music, and sharing the stage with my beautiful teenage daughter.

    Now, to bed.

    Thanks all who took my survey, thank you thank you!

    I have been noodling over the book, and got bogged down in how long it got. I put that one on the back burner, and what wants to be on the front burner is this one:

    Vitality from the Inside Out: 9 steps to personal congruence

    Why congruence? Because this is what I instinctively did when I received my diagnosis in 2007. I knew that I had to get 100% of me behind staying alive and thriving past my diagnosis. I wanted to raise my children. I knew that only a life that I was really excited about would be worth the fight I had in front of me. So, I set out to heal my whole life. I was seeking congruence.

    This is a word that’s been at the heart of my value system for a long, long time. It feels great to name it and look at the future through that lens. This first e-book will get my toes in the waters of e-book and internet land. Then, I’ll write some more.

    I have a few titles in mind to help my sisters who are entering Planet Cancer, and for their families. I wish I could snap my fingers and write them all at once, and have them ready tomorrow!

    My son made a powerful observation about Maurice Sendak and Dr. Seuss. I commented that both of these children’s authors lived long, productive lives. My boy quipped, “that’s because their lives were full of peace and purpose”. What a kid. Pretty world smart for a boy of nearly 15.

    Peace and purpose is what a congruent life looks like.

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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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    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.

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