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    As I am settling into the blogsphere, I am being initiated into unfamiliar territory, the slimy underbelly of comment spam.

    These spammers are so crafty!  They have their canned complimentary comments that they inundate me with, hoping that I will post their comments along with links to their sites.  The clue I get that they are spam are the following:

    They are highly complimentary without being specific at all.  “I could not have found the information you have provided anywhere else”  or “I really love your blog and am now suscribed, keep up the good work!”  Ah, the proud blogger is pleased until noticing that these exact comments are coming in from multiple sites.

    They indicate a problem which it is imperative that I solve, by publishing their comment.  “Your feed does not seem to be working, is it your site or my computer?”  Answer:  I have subscribed to my own feed on all three browsers and I know they work, thanks so much!

    Another approach is to try to get me riled up.  “Can I place some of your post on my website if I link back to your site?”  No, duh, it’s copyrighted.

    Or, my favorite:   “I have submitted several comments which have not appeared here, is there something wrong with your spam filters?”  Dude, I am the spam filter!

    Why is this relevant you may ask?  Well, actually, pondering why I am so annoyed made me think of how spam gets into my life, and why I hate it.

    Spam can be annoying communications that require a response, which are a waste of precious time that is better used for other things.  Do you have any of this in your life?  I do, although a lot less than I used to.  Spammers use any method they can think up to get your attention, so you’ll buy something, do something for them, or provide a way for them to get what they want.  Do know any people like that?

    What this reminds me of is the importance of valuing my time and energy, whether anybody else does or not.  Of course the irony of this is that the more I value my time and energy, the more others will value it.  The spam filters work better as they identify what is spam.

    My personal spam filters:

    Guilt and shame indentifiers.  If guilt and shame are present in the communication, I’m not playing.

    Resisting snap decisions.  When someone wants me to do something and they want it right now, I insist on taking time before deciding, and I tune into whether I really want to do what I am being asked to do, and why.

    Willpower!  Just because I would like to spend hours noodling around on the internet doesn’t mean it is the best use of my time.

    Supportive people in my life.  These people remind me what healthy, mutually respectful relationships feel like.  I gauge other interactions by this positive experience.

    Caring for Me time.  The more rested, balanced and centered I am, the better the decisions I make about anything in my life.  I make time for real sustenance, not spam.

    Real food is good for you, spam will make you fat and lethargic!

    Real food is friends, creativity, meaningful work, walks on the beach, children (insert your real food here).  A steady diet of real food, with minimal spam, keeps me strong, healthy, and loving life.

    Just say no to spam!

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    The day of my cancer immersion (Monday) I was talking with my new friend Norine, and she expressed frustration that she was not feeling better faster. She acknowledged that she felt “a bit blue”. I understand this so well!

    After the heroics, there is the plodding back into life as usual, except that usual is not what it was before. The hordes of supporters get back to thier own lives, and the well-wishers relax a bit, seeing that you’ve successfully weathered the storm. It is not uncommon for the blues to set in, as we adjust to our post cancer lives.

    So why is this up for me right now? Maybe because the process continues to be cyclical. There’s the first bounce back, after treatment is over. Then, settling in to survivorship. After settling into that, I now find myself back into the world of cancer awareness, advocacy, research, other people’s stories, and suddenly the thing I hardly thought about at all is constantly on my mind. Concerning myself with educating people about IBC is bringing me back to how I was snatched from the lion’s mouth myself, thanks to a truly excellent team of doctors who had IBC on thier radar. The last few days I have been grappling with the fear of recurrence, as my brain is steeped in the statistics I so successfully ignored when I was being treated. Suddenly I’m worried about blood tests maybe I should be getting that I’m not. Every little ache and pain takes on huge significance. As I write this, I am remembering my last freak out, which was certainly more warranted, because I was in the riskiest time. Dr. Brown practically had to give me a shake, as she said with a chuckle and some exasperation, “Relax! All your doctors are very happy with your test results!” My pathological report was good, my scans were clear, and I was gripped with terror. IBC is known to bite back, and to do it quickly.

    So why the freak out now, nearly four years later?

    The better my life gets, the more there is to lose. Silly perhaps, but there it is. Many hard knocks in the past have taught me that just when things get good, something bad happens. When I was diagnosed, I decided deep in my bones that this was the last time I was seriously getting hit hard upside the head. This was Persephone’s LAST trip to the underworld dammit, I’m coming out now and staying! At the time I was diagnosed, I was blessed with a very deep faith that all would be well. I didn’t know where that came from. I am convinced that I was simply carried by grace. I told myself that if I got the lesson the teacher would not have to reappear. I don’t know if that was strictly true in the logical sense, but my heart and soul believed it, and I think my body listened. As a result of that decision, my life today is vastly different from what it was. I do things that matter to me. I let my heart direct where I spend my time. I have made the decision not to just leave IBC in the past and forget about it, but to have compassion on those who have yet to be diagnosed, and do my part to see that as many as can be will be diagnosed in time to have a real chance at survival.

    So maybe, because my life is so beautiful to me now, I distrust the changes that I have made, and have backslid into fear. My life used to run on fear. My home was full of fear, my past was full of fear, I was afraid for my children, afraid for me. Fear is an old habit that dies hard. To get well I chose love instead.

    I have to continue to remember what a powerful choice that was. I need to keep choosing it every day, because this day is all any of us have really.

    Today I realized that I had neglected my self care. I knew this because I discovered that I had become out of touch with myself. This discovery came when I took the time to settle in again.

    Self care is not something I do because it is the right thing. I don’t do it because I am terrified of recurrence, which is of course a legitimate fear. I don’t do it because somebody wags a finger at me and says, “please take care of yourself!” It certainly is a challenge to do it. I do forget, lose track, neglect my own needs for something I feel to be more important, like an idea that has run away with me, handling some kind of family upheaval (my children are at each other’s throats again) or omigod so much to peruse on the internet that can’t wait until tomorrow.

    So why? Why is self care so important, if not for the reasons I have just stated?

    Some months ago, some of my survivor friends and I were discussing self care and why it is so hard to do, why we fight against ourselves to do it. All kinds of reasons came up for not doing it. We were all aware that it was vitally important if we wanted to stay well. We decided to do some guided imagery. We entered into our heart space to explore. What came out of that journey is the picture I’ve included in this post.

    For me, self care is love in action. When I care for the temple that houses my spirit, my spirit is happy. When my spirit is happy, I will expand, take risks, be creative, give back. When my heart is open I will find my own treasures there, and share them. When my body is rested, well fed and tranquil, my mind is not so cluttered and I can be patient and focused. In this way I have more to give to others and to myself. In this way everything I give to others is mine also.

    “self care is the key to the treasures of my heart”

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    My friend Lee just sent me this link. What a fabulous thing!

    One of the things my mom did for me when I started treatment was to get me a cleaning lady. She decided to do it and didn’t doubt for a second that it would be a huge help, and it was. A friend of mine sent Yolanda to me, and she was without a doubt my my angel.

    I felt badly for laying down on my tush while she scurried around my messy house, but she sang as she worked, and she reprimanded my children ever so kindly for letting their rooms get so out of control. If things got lost, it was Yolanda’s fault!
    Because I had her, I could rest. It took a huge amount of stress off.

    It’s one of those things I would highly recommend in any case for anyone going through cancer treatment. If you can’t afford it, here’s “cleaning for a reason” to the rescue!

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    Cleaning for a Reason
    If you know any woman currently undergoing chemotherapy, please pass the word to her that there is a cleaning service that provides FREE housecleaning – once per month for 4 months while she is in treatment. All she has to do is sign up and have her doctor fax a note confirming the treatment. Cleaning for a Reason will have a participating maid service in her zip code area arrange for the service. This organization serves the entire USA and currently has 547 partners to help these women. It’s our job to pass the word and let them know that there are people out there that care. Be a blessing to someone and pass this information along.

    http://www.cleaningforareason.org/

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    I’m so glad this service is available. Kindly put this in your mental rolodex in case someone you love faces cancer treatments, and if you’re running your own triathlon be good to yourself and call these folks. That’s what they’re here for, and you’ll be glad you said yes.

     

    Sometimes ignorance really is bliss. After my needle biopsy, while I was waiting for my diagnosis, my mom came to the terrifying conclusion that I most probably had Inflammatory Breast Cancer, even though she really tried to talk herself out of it.

    When I received my diagnosis, I called her up and told her “the scoop”. She did not in any way blow the whistle on herself, she did not in any way indicate how she felt about this news. She asked for Dr. Brown’s phone number so she could talk with her personally, and later called me to tell me that she felt “very reassured”.

    I was perfectly happy to let my mom be the keeper of scary information. I figured she would tell me what I needed to know, and she did. I focused on managing the treatments and keeping my momentum, because I understood that this was what I had to do. I took care of myself, blogged, let people help me, and attached myself to fellow survivors and patients that inspired me.

    I looked into IBC a little more after my surgery. I freaked out a bit then for a few weeks, and then decided that it was a waste of my precious time. My self care program continued to be my focus, and the weeks and months passed.

    Now, nearly four years later, I am surfing the net for fellow survivors. I am finding women who were not so lucky as I was, women who waited too long to be diagnosed through no fault of their own, or whose cancer was just that much more of a cussed animal than mine was. I am aware that although I am past the highest risk period, there are no guarantees. I must use every day to good purpose. This is of course something I want to do anyway.

    This dose of reality is something I can cope with now. Not so much before, when I just had to keep my eyes on the prize, the chance to see my two beautiful children grow up! Now that the worst of it is over, I am more than ready to focus on doing all I can so that others are spared. Getting the word out about IBC has become an obsession. Finding hope and sharing it has become my life’s work.

    Sometimes emulating an ostrich is really not such a bad strategy!

    Wow, what a long strange trip it’s been!

    I started the Caringbridge site when I was just about halfway through my four months of chemotherapy.  I wish I had begun much sooner.  Blogging helped me through, but more importantly, I didn’t have to talk on the phone to wellwishers while I felt rotten, and I didn’t feel guilty about it because I knew they could check up on me.  On those days when I felt really abysmal, I would look through all the good words in my guestbook and feel better!  Since that first blog, I posted 408 entries totalling 136 pages.  Most of these were written before 2009.  I also had over 15,000 visitors.  Now that’s support!  You can find the link to Caringbridge to the right of the page.  It’s super easy, it’s free, and if you’re walking the tough path right now, it will help you in more ways than you know.

    So here’s a bit of history from the archives.  I’ll publish the good ones as I go through my old journals.  I’m getting ready to shut down that site, to make way for someone who really needs it.

    April 11, 2007

    Well folks, it’s full speed ahead!

    My white blood cell counts are so good that Tim (nurse) is going to ask Dr. Brown about cutting my neulasta shot dose, which will make this round easier for me. Huzzah, 4 of 4 down!

    Today is wierd Wednesday. I always feel strange on Day 1, kind of racy and disoriented, running hot and cold, just odd. But it’s not bad, just disorienting. By Friday I feel rotten, but this time maybe not so bad if the shot is not full strength.

    The infusion went fine. I was blue at first, annoyed that I have to deal with a cold on top of chemo, but then my ray of sunshine arrived (Flo, of course) bearing Jamba Juice, a sweet, buttery goodie and a big smile. That made things better! It got better still. I made a new friend, Avis, who came in for her infusion, took the chair next to mine and beamed at me the way I like to beam at people. She had a friend visit too, and the four of us passed the time in very good spirits. It even got a little bawdy…the topic of breast reconstruction set that off… where else do people have a good laugh about that stuff?

    Laughter gets me through… Thanks Avis and Company, thanks Terry (my impov teacher) who said, “It’s so hard when your body feels so bad, but your heart is so wide open!” So true, and she knows. She went through it four years ago. I feel this opening getting wider every day,opening into full flower like the intoxicating roses in my garden.  Thanks Steve, for making me laugh this morning, and putting the picture on my website. Thanks Cindy, for the yummy lentil soup I’ll be noshing on while I’m hunkered down these next few days. And thanks Terry, for the Trader Joe’s run today for the stuff I forgot!

    So now I settle in and take care of myself. My only job at this moment is to rest, heal, get well…thank you all for your prayers and good wishes. I truly could not do it without you!

    Love,

    Elizabeth

    Current time postscript:  neulasta was the stuff that you get to instruct your bones to make more white blood cells, so your counts don’t get low.  It made my bones hurt, a lot. I used guided imagery to tell my bones to produce white blood cells, so I ended up getting half the neulasta.  That fourth infusion was much easier.

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    As always, I have had a most enjoyable hour with the 2nd and 3rd graders at College Park Elementary School today.  On Mondays, Tuesdays, Thursdays and Fridays, I spend 40 minutes or so with a bunch of kids who want to engage in theater during their lunch break.  The first half of the week is big kids (4th and 5th graders) and the second half of the week is little kids. I have two people teaching with me, Jeremy on Tuesdays and Thursdays, Kari on Mondays and Fridays.  They are both about half my age and I adore them.

    Today we played a new game with the little kids.  It’s called “what are you doing?” and it’s an improvisation game.  I noticed a couple of kids that were afraid to get up in front of their classmates and do it.  No doubt they were afraid of appearing foolish, besides being just plain shy.  Some of the kids got up there and froze.  This is a think fast game.  I could see the little wheels and cogs in their heads evaluating possible ideas, afraid to toss out the wrong one, or just drawing a blank.

    I recognize this problem very well!  I spent the last few minutes of class talking about the inner critic, which Kari and I renamed The Goof Up Goblin.  The Goof Up Goblin really messes with our ability to have fun, and he slows down the game!  The Goof Up Goblin can be male, female, big, little, green, freckly, have wild hair, whatever way the Goblin shows up.  We chatted about the kind of stuff the Goblin  likes to natter in our ears.  I introduced a little box where they can keep the Goblin out of trouble when they’re coming to drama class to have fun. It’s right by the door, and they can just put the Goblin in there.  She’s fine in the box, and doesn’t make it into our classroom.  I would love to just make the Goblin go away completely, but that is not in my power.  I don’t know what other people or situations are feeding those goblins.  I just know that no goblins are allowed in My Classroom!

    The Goof Up Goblin can really mess with you if you are being treated, or are surviving cancer.  What I tell the kids is that they really can’t mess up, because there is no correct way.  The rules are there to help you be creative, but within those rules anything goes!  Today we shopped for smelly cheese, sucked on giant gumballs, flew airplanes, salsa danced, walked through peanut butter, went to the moon, chased bugs, and more other wacky things than I can remember.

    When you’re taking care of yourself, there is no right way, just the right way for you.  Maybe you want to be social, maybe you want to cocoon.  Maybe you blog, or maybe you hate the computer and would rather read a book.  Your approach may be to seek laughter and take comfort in your friends, or maybe you need to get really mad!  I’ll never forget a woman I met on a couple of occasions, once at California Cancer Care and once at Mills Hospital.  She swore like a trucker.  This is just SO —-ed! This just SUCKS! She was mad!  I asked her what she did, and she’s an architect.  Rock on lady!  I saw her later as she recovered, and she was doing great.

    What I need to feel good and what you need to feel good is probably very different.  There really is no right way to do it.  When well meaning people tell you what you should be doing, take it with a grain of salt, appreciate that they care, and do whatever the hell gets you through it.  I did Guided Imagery, massage, acupuncture, healing touch, therapy, comedy improv, shamanic journeys, art therapy, and who knows what else.  I have been a professional massage therapist for over twenty years, and it felt right to choose these things.  I even got on stage with a major part and performed a grueling schedule while I was going through radiation, and it fed my soul so delightfully that the exhaustion that came after was worth it.

    Another friend I know took good advantage of Ativan (affectionately known as Attagirl) and someone else worked at her job all the way through, which I did not.  Everyone of us is different, and the right way to cope is the right way for us.

    The people who love you will of course share their opinions.  It’s one of the things they can do, and they have to do something.  That’s a beautiful thing.  And, the last word on what’s right for you comes from you!  It might take a little practice to hear that voice, but take heart! The more you listen to that wise, amazing voice the louder it gets and the more wonderful it sounds.

    Today I am 49 years old, and I wouldn’t go back to being 45 for anything.  The Goof Up Goblin was still strong then.  He still exists, but he’s tucked away in a corner of my mind, and he has become very shy. I have compassion for him and I know where he came from, but I don’t have to listen to him.

    The best birthday present for me is the sun, my children, my husband, the little kids and the big kids, that I get to blog, that I get to touch people, that I’m still here.

    Wishing you every treasure your heart can reveal to you.

     

    Pink Link is a comprehensive online resource for people who have faced or are facing breast cancer.  You can find the link on the right of the page.  I highly recommend this site!

    This month there is a contest to win a book about humor, “Laughter is the Breast Medicine”.  Of course I just had to get into that act!  Laughing got me through, no doubt about it. To have a chance to win the free book, I had to answer the question, how has humor helped me heal?  Just thinking about that made me laugh all over again.  So I sent my entry, which you can read here!
    Here is my answer to the question,  “How has laughter helped you heal?”

    I was diagnosed with Stage IIIC Inflammatory Breast Cancer in February of 2007.  At the time, I was taking a comedy improvisation class on Tuesday evenings with my significant other. It all happened very quickly.  From needle biopsy to chemotherapy was ten days.  When I set my chemotherapy schedule, I kept my class schedule in mind.  I had chemo every other Wednesday (dose-dense chemotherapy) so that by Tuesday evening I would feel well enough to go to class.  I didn’t miss a single one! The week after my mastectomy, I still showed up and watched. I howled with laughter every week, all the way through chemo, surgery, and most of my radiation treatments.  I finally quit when I found my way to the stage and worked out my cancer angst as the White Witch of Narnia.

    Sometimes Steve would get protective of me when the physical comedy got wild, but the benefits of laughing far outweighed the risks of being spun around on the floor or pretending I was a wild animal.  We even got mileage out my baldheadedness.  Steve was bald too.  During a show we did in the community, we staged an argument in which we both pulled off each other’s wigs! After that one, Steve and our fellow improviser Mark went off on “making the chemo girl laugh” and it just got more and more outrageous.  I couldn’t breathe I was laughing so hard!  Tears were rolling down my face and they asked, “are you all right?”  Oh yes, yes, yes!  and on they went.  As I recall I felt pretty great the day after that one.

    Humor during cancer treatment wasn’t all about just laughing a lot.  It helped me so much to see the absurdity in the whole situation.  People around me were sometimes baffled by what I found funny.  How many tweens do you know who call their mom “Baldy” when they’re mad?

    What’s a bad hair day on chemo?  When you can’t get your eyebrows to match!

    Steve used to call me every afternoon during his commute and make me laugh.  It always made me feel better.

    Steve and I did not continue our relationship, but I bravely ventured out into the dating world again.  Tom and I are a success story.  If a woman with one boob, two kids and no money can find love, anybody can!  I knew he was the one when I knocked on the bathroom door one morning and asked him if my prosthesis was in there.  Now there’s a dilemma.  Can’t go out without it!  His response was to hand it to me and ask me blandly,

    “Honey, will you please keep track of your boob?”

    I could go on, but that probably is a long enough answer to your question!  My plan is to read and review this book, and post the review on my blog.  I will do that whether I win this freebie or not, because laughter is just SO good for you.

    I would know!

     

    That is the question…

    Is it more important to stay on the straight and narrow with diet, exercise, good health habits etc. or do you get to goof off because that is good for your soul?

    I think that a balance between the two is essential.  All work and no play makes Elizabeth a dull girl.  When the three tween girls who have been negotiating their spoil bring me some, I am delighted.  Reese’s peanut butter cups, yum!

    Sometimes people ask me, “did your cancer diagnosis make you change your diet?”  Of course the implication was that it was probably rotten before.  Actually, it wasn’t.  One of the toughest parts of living another woman’s nightmare is that she wants to make sure it will not happen to her, so she has to figure out what I did wrong so she can reassure herself that she is safe. That’s a whole different topic for another day!

    Back to straight and narrow…

    How is it that some folks do everything right, eat very well, exercise, practice yoga, meditate, don’t eat red meat, drink moderately if at all and still get cancer?  Others do all the wrong things and live to be 90.  Go figure!

    Yesterday I saw a video of the oldest concentration camp survivor, named Alice.  She’s a pianist.  She is 107 years old.  She survived because she was a famous concert pianist, and the prisoners who could make music had something to offer their captors.  What struck me most about her was that she is happy.  She plays the piano every day, still.

    How much health value does happiness provide?  How do you break down food made with love into bad  or good?

    Obviously I don’t go crazy on red meat or skimp on vegetables.  I walk most days.  I tend to my health.  The most important thing about that is the message I send to my soul. I strengthen the connection between body, mind and spirit by being committed to caring for me.  This is self care from love, not fear.

    If I am terrified of an occasional hamburger, or if I am awake nights because I ate a peanut butter cup, then my self care is motivated by fear.  Fear is hard on the body and weakens it.  Love strengthens it.

    When I was very sick, one of the nurses I worked with organized a food delivery sign-up so that I would not have to prepare food for my family.  I never worried about whether that food was vegetarian, how much fat was in it, or anything else.  I was so grateful to other people for showing they cared in this way.  We ate it all, with gratitude.  Gratitude is the best nutrition there is.

    This Halloween eve, as I sat in the kitchen drinking tea with my friend, I got such a kick out of those girls negotiating for their favorite candy.  When all three of them came and plopped a bunch of peanut butter cups in front of me I was delighted, not so much about the candy, but by the spirit in which it was given.

    So, I continue to be committed to my health, my happiness, my art, my dear husband and children, and to bold, outrageous naughtiness whenever I get those special opportunities.

    Here’s to your naughtiness this Halloween!

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    One of the problems with our current, new age influenced culture is the idea that we create everything that happens to us.  If we believe that, we can un-create it, or so the wisdom goes.

    Even if you don’t necessarily believe that, a lot of folks do, and it can make it hard to be gentle on yourself.

    I have always been health concious, although I have not always done what I know to be best for myself.  I certainly pointed a finger at myself at first when I was diagnosed with Stage IIIC Inflammatory Breast Cancer.  If only I had been more consistent with exercise.  If only I had eaten more vegetables, if only I had left a stressful marriage years before, if only……

    I got over that and got committed to surviving.  I had some strong beliefs about what would work, and fortunately for me I survived.  Did I survive because of the acupuncture, the massage, the therapy, the healing touch, my health shakes, my self inquiry?  Or did I survive because Dr. Brown knew what sort of cell type I had and that she expected the cancer to respond to the big guns she fired at it?  Was my fantastic response to chemotherapy a result of my holistic East/West approach, was it luck, or the wonderful, compassionate and thorough team of doctors who treated me?  In any case I was blessed.  If I had a setback whose fault would it be?

    Nobody’s!  I repeat, nobody’s.

    I had a friend in my art and imagery support group who had faced an aggressive breast cancer.  She believed strongly in the approach she had taken.  When her cancer recurred, she was certain that she had failed.  It was hard to watch her beat herself up about it, and I was certain that her self flaggelation was not helping her body to stay strong.

    I believe very strongly that self love helps us to be strong.  Love strengthens and heals.  Whatever beast has intruded on your life, self blame will only give it power.  Self blame is a useless, counterproductive activity.  Now don’t blame yourself for indulging in self blame!  Enough already if you are doing that!

    Cancer happens.  It sucks.  Sometimes it happens again.  Cancer happening again does not mean the end.  I asked my oncologist what would happen if the cancer I beat once were to return.  Her response was that we would beat it again.  She’s a research specialist among other things, and in the cancer world new stuff is coming to light all the time.  It is true that people still die of cancer.  That does stink.  However, it is also true that more people don’t die than do on the whole.

    Setbacks can be anything.  They can be chemo effects that don’t go away as fast as you want them to.  A minor or major recurrence can be a setback.  I viewed my lymphedema, which surfaced nearly two years out, as a setback.  At first I was annoyed at myself for not being more careful.  I got over that.  It was just a setback, and now my lymphedema is very well controlled.  Hey, I’m still here!

    If you are reading this today, you are too, and that’s what matters.

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