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    As I reflected on the caringbridge entry I posted yesterday, I remember vividly making a very deliberate decision. When I was diagnosed, I sat myself down and told myself that I would make a practice of saying yes to whatever anyone wanted to give me during this undertaking. I would do so whether I thought I needed to or not.

    It seemed to me that I could use some practice allowing others to help me. I knew I wasn’t very good at it, and I knew I didn’t even have a clue what I needed.

    I just decided to say yes, just to get used to saying it.

    What happened was beyond amazing, it was exhilarating, it was heartbreaking, it was more deeply healing than I could ever have imagined. I had to open the doors of my heart as wide as they could open to keep saying yes. The more I stretched, the more blessed I felt, more tearful, more in awe, carried by a wild, rushing wave of grace.

    Now, three years and seven months since that wretched infusion, I smile and remember. I try to remember the feeling now, when my life has resumed, my kids are growing, my focus scattered most days. I almost feel nostalgia for the suffering, because, in Kahlil Gibran’s words, “the deeper that sorrow carves into your being, the more joy you can contain.”

    During that period of deep suffering I felt some of the most indescribable joy I have ever felt, joy that made me sing and cry at the same time, overwhelmed by the breeze on my cheek and the smell of a rose.

    To have a heart that open is unsustainable, and it is paradise.
    Saying yes still, today, helps me remember.

     

    Here is the continuation of last Saturday’s post. As you can see, there was a crash!

    Wednesday, April 11, 2007 5:45 PM, CDT

    later….

    blech, blech, blech. Thanks mom, for letting me bellyache and whine when it gets miserable. This one came on top of the first 3 with a cold and some antibiotics for good measure… I feel truly rotten. I keep telling myself, it’s the last of this one!

    I hope Steve is right, that since the bad part started sooner, maybe it will be over sooner, especially since I may have a less fierce shot tomorrow, and I don’t have my energetic little sidekicks to take care of.

    Thanks so much for caring, everyone. I’m going to take my weepy little self to the sofa, and…

    just got the knock, dinner arrived, thank you Donna, you have no idea what a difference this makes. I have to eat to make the nausea subside, but it’s hard to get motivated. Thank you! I look forward to seeing what’s in the bag.

    And in the mailbox, Becky’s weekly “healing card”. Oh Becky, your timing is impeccable.

    one day at a time…

    E

    Postscript, present time:
    This fourth infusion was in fact the second worst(!), but it was bearable with help. I look back on it and wonder where I would have been without all the wonderful people who helped me. Healing cards once a week like clockwork, others managing my energetic children, food appearing at my door…I often wondered during those times what people did who didn’t have people to help them.

    After this experience I had a new appreciation of how we humans really do need each other, and for how much a difference something that seems small can make.
    The thing that amazed me most of all was that I didn’t have to organize or delegate at all. People did what they were moved to do, and each time it was perfect.

    Now when I am in a situation where I could help someone, I ask, and if they let me, I do.

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    I once heard a story about a young girl with IBC. She was embarrassed to talk about the rash on her breast. She did not get diagnosed and she did not survive.
    Nasty opening sentence, right? Well, cancer is not nice, it’s not pretty, and while we don’t have the answers on what causes many cancers, we can and must do all we can to make sure they are detected, and as early as possible.

    One of the most important ways we can make this happen is to teach our children, and ourselves, to be on good, intimate terms with our precious bodies.

    One of my readers asked, is IBC hereditary? Many people want to know what puts people at risk, so they can either do something about the risks or reassure themselves that they are doing all the right things. The fact is that for many of us, a cancer diagnosis blindsides us out of nowhere. Very few of us are watching out for cancer. We don’t want to think it can happen to us.

    Being scared all the time is no answer either. What we can do is pay attention to our bodies the way we care for our children. If our child is cranky, we see what they need and give it to them. Is it sleep? Is it food? Is it a hug or a cuddle? Do they need to run off steam outside because they’ve been cooped up all day?

    Instead of seeing our bodies as that which produces (the work, meeting the deadline, the taxi service for offspring, etc) we can choose to enter into partnership with our bodies.

    I had that conversation with my daughter the other day. I told her how important it was for her to get to know her breasts. She’s growing into a young woman before my eyes. So many girls her age are wearing pink ribbon bracelets, and when I ask them what they mean, they say “breast cancer awareness”. When I ask them what that means to them they get squirmy and say, “I dunno!”

    Are we teaching our children to know their bodies, and be comfortable talking about them? Do our daughters and sons know they can come talk to us if they notice something not quite right about their “private parts”?

    What kind of example do we set for them? Do we eat good food, mindfully, enjoying each others company? Do we get enough exercise? Do we go to bed when we are tired?

    In the two months before I was diagnosed, I had pain and tingling in my left arm. I was a professional massage therapist, and smarty me, I figured I had been working too hard and was developing thoracic outlet syndrome. I began stretching like mad, but it wasn’t working. Instead of inquiring, taking the time, tuning in to my body as I knew how to do, I told myself to get back to my yoga. My hands got cold (they had always been characteristically hot..my clients said they were like heating pads) and I assumed that stress and lack of sleep was the culprit. My department had just downsized, and I had almost lost my job. I didn’t have time for a crisis.

    When it became clear what that little rash was, all of it made sense. It was a good thing I reacted to that tiny rash and did something about it. Many women don’t, they just figure it’s a rash and will go away.

    I am trying to teach my rebellious, on top of the world indestructible children to honor the needs of their bodies, and they do get tired of it. However, repetition is the mother of skill. They may think I am annoying (that’s my teenage son’s favorite word to describe me) but deep in their little noggins it will reside, and when something is wrong they will know.

    I had large breasts when I was a teenager. My name was on the bathroom wall. A boy two grades older than I was embarrassed me repeatedly. I wish I could have figured out that they were mine, they were beautiful, and that knowing them well and examining them once a month was appropriate and right, not shameful.

    After nursing two babies and letting their heads rest on my soft chest, I really missed my left one when it was gone.

    Let’s teach our children now, when it matters most.

     

    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!

    —————————————————————
    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/

    ————————————

    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.

     

    Hello Out There! Are you a cancer survivor, or do you know a cancer survivor?
    I have a project I am obsessing about, and I really think it can help a lot of people. It’s the Victory Rooms project, and you can see that the page is already up there and ready to go!

    What I have in mind is virtual rooms full of survivors, one for each diagnosis.

    When I was going through treatment, I was the only person with Inflammatory Breast Cancer I knew. Now, because of our fabulous internet, I know quite a few. We’re a global community now, so a few people in one spot becomes a multitude when everyone is in one place, even in the cyberworld!

    What if, when I was first diagnosed and my mom was freaking out about statistics etc., we had been able to open a page, see photos or images representing survivors, and could just keep scrolling and scrolling and scrolling?

    Clearly this has to be a collective effort. Will you help?

    What I would love is:
    *your name, first only or full name, pseudonyms are ok too as long as relevant information is accurate
    *an image or photo, happy photos especially wonderful, an image if you don’t want to go public
    *Your birthdate, date of diagnosis, diagnosis particulars(ex: 2/07, Stage IIIC Inflammatory Breast Cancer, Her2+)
    *Your current status i.e. in remission, NED, metastatic (I met a woman recently who had been surviving well for 17 years
    with advanced metastatic BC)
    *anything else (feeling fine, ran a marathon, skipped town and joined the circus, ambassador for IBC awareness)whatever we
    might want to know that would give hope and bring a smile. By the way, those are real examples!

    If you would like to inhabit the pages of the Victory Rooms (oh please say yes!) kindly send all of the above to my personal email address, elizabethdanu@rocketmail.com. I am hoping to be inundated!

    We’re all in this together. Thanks for reading!

     

    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!

    Inflammatory Breast Cancer is very rare, and very aggressive. I am alive today because I went to the doctor right away for something that looked like nothing. The doctor who did my ultrasound knew about IBC, so I had a needle biopsy that day and from biopsy to chemotherapy was ten days. It wasn’t a minute too soon.

    IBC is survivable, but timely (and that means FAST, folks) diagnosis and treatment is critical.  If you or someone you care about has any of the following symptoms, get to your doctor and persist until you know exactly what it is. This information is directly from the IBC research site that I have posted in my links.

    One or more of the following are Typical Symptoms of IBC:

    • Swelling, usually sudden, sometimes a cup size in a few days
    • Itching
    • Pink, red, or dark colored area (called erythema) sometimes with texture similar to the skin of an orange (called peau d’orange)
    • Ridges and thickened areas of the skin
    • Nipple retraction
    • Nipple discharge, may or may not be bloody
    • Breast is warm to the touch
    • Breast pain (from a constant ache to stabbing pains)
    • Change in color and texture of the areola

    If you suddenly develop a lump or mass, have it checked immediately. We have one reported case where a 9x8x5cm lump developed in only three weeks.

    Use caution when relying on the interpretations and reports of the mammogram or ultrasound! Inflammatory breast cancer usually grows in nests or sheets, rather than as a confined solid tumor. IBC may not be detected using either mammography or ultrasonography. Increased breast density compared to prior mammograms should be considered suspicious. Remember: You don’t have to have a lump to have breast cancer. (end of import from IBC site)

    My own experience was that a quarter sized rash became a raging hot red breast with an inverted nipple, all in the two weeks it took to get from GP to ultrasound.  When I had my scan it showed a sheet that was 11(!!!#&*) centimeters in diameter.  I was lucky.  Too many women are still losing the battle with IBC because no one shared this information with them.

    Maybe talking about breasts with someone makes you uncomfortable.  Sometimes women get uncomfortable when I share this information.  Never mind.  If she’s the one to five in a hundred breast cancers that is IBC, she will thank both of us for saving her life.

    Please tell everyone you know!

    Thank you so much for reading.

    Reading that old Caringbridge entry reminded me again of how grateful I am to my strong, resilient body.  It took such good care of me for so long.  I was under duress for so many years, I really can’t blame my precious body for letting in that intruder.  I met him in a dream, and he was wild.  Not smart, but crazy, aggressive, and scary as hell.  He was in my house, waving a broom to bludgeon me with.  He was only in the front hall.  He hadn’t made it upstairs, into the living room, or the kitchen.  In my dream, I ran outside in terror to get reinforcements.  I knew I couldn’t get him out myself, but I knew that the four men outside would come in and carry him out.

    I had that dream in the morning on the first day of chemotherapy.  I hadn’t had my PET scan yet, but after the dream I was confident that I was safely at Stage III, only locally advanced.  Steve suggested that I attack the wild man with fierce little monkeys.  Always ready to run away hand in hand with my imagination, I decided that I didn’t even want to see the scary bald man with the sharp teeth in my house.  I imagined him in a vast, empty white space, being slowly put to sleep until he was in a coma.

    Then, I changed the image to a beautiful landscape, vast and green, with dozens of little waterways running through it.  Marring this scene was a huge, ugly gray slag heap, with two smaller ones next to it.  As the Adriamycin and Cytoxan entered my veins, an army of busy little purple Ewoks, chattering and busy, marched in and went to work on those slag heaps.  I decided that they needed some bigger, stronger help, so I called in the Wookies.  It was a busy scene there!  They loaded up the mess that came off the heaps into barges, which were carried away.  Every time I had an infusion, there would be a couple of days when my breast would flush, and be extra red.  Then it would subside and the sheet in my breast would feel softer and smaller.  These tumors went from 11 centimeter and 2 plus centimeters to half a centimeter and less than a millimeter by the time I had surgery.  This was the AC.  I came up with different visuals for the Taxol and herceptin when that time came.

    I was of course concerned about white blood cells.  I watched another man get sent home, unable to have his treatment, because his white blood cell count was low.  I knew that I could not allow that to happen to me.  I could not give the aggressive cancer I was fighting any opportunity to regroup and become resistant.  Not one bad cell could survive!  So I needed those white blood cells and I needed plenty of them.

    Oh, they were so beautiful!  I love my white blood cells.  They emerge from the rich brown earth (my bones) and take shape in pairs.  They are strong and powerful, a male and a female sent out into the world of my body to keep it safe.  They look like greek gods, dressed in tunics of white and gold.  They are very tall, and they have wings.  They are noble, and they are relentless.  Any intruder is destroyed immediately with a beam of gleaming light like a thousand suns that comes straight from their hands.  If two of them are not enough, they communicate telepathically to other pairs of guardians, until there are enough to surround the threat completely.  I still to this day am aware of, and grateful to these majestic and fearsome protectors of my body.

    By the fourth infusion, my neulasta dose was cut in half.  When I started Taxol and it was neupogen (a slightly different medicine) I needed a reduced dose of that one as well.

    I met my objective.  My treatments were uninterrupted.  My body stayed the course, and I will always appreciate my body for it’s loyalty and patience.  I admire it so much for not allowing that terrifying breast cancer past my lymph nodes to escape into my organs and bones.  I am amazed and grateful that it withstood years and years of relentless stress before succumbing to a persistent invader.  Even then, my body was still there for me, and I finally learned how to be there for her.

    My beautiful white blood cells are still there, protecting me.

    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.

     
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