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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.

     

     

    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!

    Yes, I’m still here! I got caught up in the delicious madness of Narnia. We had a great run. My daughter made me proud, I found new levels of wickedness, and my husband was delightfully typecast as Father Christmas. He always is kid furniture, and for this show he was double kid furniture! Every moment backstage his lap was occupied. A wonderful time was had by all.

    In November, I had a revelation. It has given me back my life and my future. It was suggested to me that I have my son evaluated for ADHD. As I went through the process, I was startled to discover that what I was hearing applied to me. I proceeded to get myself evaluated. At the age of 51, I was diagnosed with ADHD. I have had it all my life.

    Imagine, the combination of ADHD and chemobrain! No wonder I felt like I couldn’t get any traction! Now I understood why I have spent so much of my life in overwhelm.

    I was, strangely, not in overwhelm when I fought cancer. I went into hyperfocus, much the same way I did whey I bicycled the Pacific Coast by myself in 1988. I knew the goal and the path, and I had faith that I would get there. When normal life resumed and I had to juggle many interests and responsibilities, I was overwhelmed.

    So, the diagnosis was a revelation. The most amazing part was that I stopped beating myself up for being a flake, undisciplined, and underachiever, blah blah blah.

    No one begrudges a slower time running the mile to someone who has one leg shorter than the other. It’s a simple matter of brain chemistry. My frontal lobe doesn’t have enough available dopamine. Exit self judgment, enter partnership with my wildly creative brain. I love my brain. I love how creative and intuitive it is. I just lost some other stuff to have that. So, during December, after I got the formal diagnosis, I began to research. While I was waiting to see the doctor again, I learned all kinds of tricks to work with my brain. It has been extraordinary.

    In January I saw the doc and she prescribed Wellbutrin. For me it is a miracle drug. The static in my head is much reduced, and often it’s not there. Instead of everything I have to do feeling equally urgent (prompting me to freeze) I know how to decide what comes first.

    My original intention was to try medication so I could feel what a more functional frontal lobe feels like. After researching Wellbutrin, I found to my relief that it actually has some other benefits that feel good to me. Preliminary research in mice suggests that it may have cancer preventative properties, because it reduces inflammation. It’s all good. We’ll see.

    Right now I am catching up on all the balls I have dropped in the last five years. Woo-Hoo!

    If you have left a comment recently, please forgive me. I will moderate soon. I have some spam to sift through. Aaaargh!

    Happy New Year!

     

    I have been in the middle of a five year crisis. I got a little off track. Fortunately, not far, just a little. I have course-corrected and I feel excited about life again.

    When I faced IBC in 2007, I felt deep in my bones that I would be all right. This wasn’t even logical, which fortunately I didn’t know. I just felt intuitively that the path to my survival was the path of total congruence. This is a loaded word for me. It means integrity, and by this I mean true. My life had to be the truest, more joyful expression of me that I could make it, or I wouldn’t make it. I felt deeply that I had to uncover all the joy in my life that I had been putting off until it was my time. In February of 2007, I knew that I might not get any more time. I had to make every piece of my world a reflection of what mattered to me. It was not only what I wanted to do, but it was what I had to do to get well.

    As I emerged from chemotherapy and surgery, I was back into my creativity full swing after having let it sleep for decades. I started making art, and had an art show at the Healing Store at the hospital where I was working. Some people bought prints. It was exhilarating.

    As I began my radiation treatments, I felt called to the stage after a 20 year absence. My daughter was doing theater that summer, and I found out that the main stage show was going to be “Narnia”. Waves of joy flooded through me and I knew I had to play the White Witch. It was glorious. The music was glorious, cackling and turning little children into stone was glorious, finding that my voice had continued to develop and mature without me paying an attention to it was glorious.

    Being fully self-expressed was my lifeline. I developed boundaries, much to the dismay of my children. I decided that if it wasn’t fun, if it didn’t make me happy, I wasn’t doing it. Most of all this applied to work.

    As the terror receded into the past, I began to realize that my commitment to self expression had waned as well. Hence, the crisis. I wasn’t bouncing out of bed happy to be alive as I did back then, just after being plucked from the lion’s jaws. In 2008, I was so happy every day that choosing the path to joy was easy.

    What if from the very beginning, each of us learned to express ourselves truthfully in every area of our lives? Would we even get sick? When I got sick, I hadn’t felt much but resignation and stress for a long time. I was a burnt-out massage therapist recovering from a soul-killing marriage and ugly divorce, with two hurting children. I didn’t see any light at the end of this dark tunnel.

    When I was told “you have cancer”, I knew I had to find it or die.

    Lately I’ve been busy writing, working at the children’s hospital, seeing private clients, and looking for the opportunities I may have been missing to be wildly creative. The book got back-burner’d for a little while as I stretched my freelancing muscles for paying clients, including some web pages for a silicon valley consulting company. Bay Area e.T.c. is doing “Narnia” again, and now my daughter is an accomplished thespian who could shine in any role she gets. She will audition for the part of Susan, and I am preparing to bring an older, wiser, slightly rounder, certainly more energetic White Witch to the stage. My husband is even planning to get in on the fun.

    A woman’s gotta do what a woman’s gotta do. What is it that you gotta do?

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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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    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…

    I wonder sometimes where I’d be today if I hadn’t faced the beast.

    Would I still be as stressed as I was? I don’t believe that everyone has a story like mine, and I do know that some cancers appear randomly, without any precipitating event. And, some of us were a breakdown ready to happen.

    I know that for myself, facing cancer was a major, major catalyst and as I result I changed everything. What was working, I did more of. What wasn’t, I got rid of. Things I loved that I hadn’t been doing became the things I did first.

    This weekend was about writing! I wrote an essay for a contest and sent it off. I had been procrastinating about it, even though I knew I would love to do it. I finally sat down to write and set my timer, telling myself that I would just scribble for 15 minutes and that would get me started. I ended up writing an essay that made me weep, one that I feel very good about. I don’t have any grand delusions that I will win (I’m sure there are 1000′s who sent an essay) but one way or another I’ll publish it! Alas, not now.

    The other deadline I had was a provisional assignment for Yahoo. I applied to be a Featured Contributor. Before I had cancer, I wouldn’t have even applied. I would have just assumed that I didn’t have the expertise or the clout to write about Alternative Medicine, which is the category I applied for.

    The new me said, Hey, what have I got to lose? If this is for me, not doing it is wasting time! I applied and forgot about it.

    Four days later I got a provisional assignment with a four day deadline. Ace the assignment and I’m in. I ace’d it. If you want to take a look, here it is:

    My article on herbs and chemotherapy

    I was delighted with what they asked me to do, right up my alley! I got paid to write. That just rocks.

    My freelance writing career has begun. I don’t know where it will go, and that’s half the fun. After I had cancer I began redesigning my life, making it up as I went along.

    Now I am a massage therapist/teacher/thespian/writer/artist/wife and mom. I really don’t know what to say when people ask,

    “so, what do you do Elizabeth?”

    Oh yeah, and blogger. Thanks for reading!

    I truly can’t wait until next Wednesday…

    I have one foot in the school routine and the other in the last gasps of summer, and I say enough aready…

    My son started high school last week. So far, so good! My daughter starts the seventh grade next Wednesday, and at this point if I try to hold her to a sane schedule she accuses me of ruining her summer. Ah, the drama! No wonder we do theater together.

    What I want desperately is some sleep, and next week I shall have it.

    I have had a lot of ambition for these last few days, and have fallen miserably short of everything I wanted to get accomplished before Fall hits full swing. I am going to be busier this fall than I have been to date since I finished cancer treatment over four years ago. I am wondering if I will be able to keep it up, grateful for the chance. I am working more at the children’s hospital, the drama club will be resuming, and I have another part time job visiting elderly folks who need a bit of sunshine (this doesn’t feel like work at all). I also am determined to be a super organized mom (there’s a stretch) and may be in the next musical, not sure yet. My mom would caution me against trying to do too much.

    I kind of think “too much” depends on what the too much is. Is it something that drains me or feeds me?

    Am I excited about it?

    Can I recover my momentum if I have one of those crazy no sleep nights? What’s my recovery plan if I get too insanely overwhelmed? Will I miss out if I don’t do these things?

    Are my eyes too big for my stomach, as the saying goes?

    Better to stretch than to shrink, and I can handle it. My backpacking trip restored my confidence in my ability to take some lumps, so here goes. My kids are transitioning, and so am I.

    And, that iconic five year anniversary looms in the near future. I am almost superstitiously afraid and also contemplating a deep sigh of relief. Five years is not a promise, but it makes things look better and better.

    My daughter is at her dad’s tonight, and I am going to bed early!

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