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    From the monthly archives: November 2010

    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.

     

    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!

     

    I secured my first Thriver story today.  My wonderful postman, Douglas, has agreed to tell me his story so I can post it as my first Thriver Profile.  My plan is to present these profiles of real people beating cancer on a regular basis, around once every two weeks for awhile.  I have at least twenty people on my list!

    Douglas and I were talking today about what a morass the internet is when you’re newly diagnosed.  There is so much information, and a lot of it is very valuable.  Some of it is contradictory.  Some of it is outdated and scary.  I suspect a lot of us, like my friend Douglas, will flail around out there for a couple of weeks and then “just put it away”.

    I want to offer something different here.  For every cancer, there is somebody who has prevailed against it, and it is those people that cancer patients need to know about!  If you’ve just been diagnosed with colon cancer, Douglas’s story will give you hope.  If you’ve been diagnosed with Inflammatory Breast Cancer, read my story and take heart, because that is why I tell it.  If you are facing Ovarian Cancer, then you can be uplifted by my Aunt Joan’s story and my freind Avis’s story, if they will let me tell them.  I haven’t asked yet!  :)  These two amazing women have both conquered two separate cancer diagnoses.

    I know people who have faced and prevailed against colon cancer, throat cancer, Lymphoma, and Triple Negative Breast Cancer. I know people who were diagnosed at Stage Four and today are cancer free.  I also know people who are in remission and going about their lives, coexisting peaceably with their metastatic cancer. A friend of mine has a brother who has survived over 15 years after a belated diagnosis of Breast Cancer.  All of these people are on my list, and if they say yes, you will read their stories.

    As this site develops, I am getting a clearer and clearer idea of what I want it to be.  This is a place to find tools you can get your hands on with great strength, tools and inspiration to keep your chin up.  Sometimes keeping your chin up is the most important, and maybe the only thing you can really do today.  I’ve had plenty of days like that!

    You don’t have to have cancer in your present, future or history to welcome a boost of some kind.  I hope anyone who wants one can find it here.

    Second thing:  I need to adjust my tagline.  I don’t want just “resources for during and after cancer”.  What can I add to this line that expresses what I’m really doing here?

    Please, comment away, I need your input!

    P.S.  Are you seeing popups on this page?  I you are, I am going to kick some —.  I hate popups and I am getting them on my admin page.  Please let me know!

    P.P.S.  I just updated “my story” with photos.  It’s kind of a long story….

    Some days are just like that.

    Today I accompanied a dear friend and her husband to her first appointment with her oncologist.  They have been married for fifty five years.  She has Stage I lung cancer.

    It was a hard afternoon.  One of the rotten things that cancer patients have to accept is that the treatments are usually hard, and the good (#@&!!!) part about getting it when you’re young is that the treatments can be more bearable and less dangerous.

    I remember when I was going through it and I was told untold times, “stay positive!”

    Rubbish.  What does “stay positive” mean?  If it means smiling all the time and caring for everybody else, forget it.  What it means for me is to feel everything, make it as comfortable as I possibly can, and not fall prey to helplessness or hopelessness.  Stay positive for me means be real, and have people around that are totally ok with that.

    A friend of mine wore a “chemo whore” t-shirt.  Her husband wore one too!

    I wore my “cancer sucks” button on my bucket hat.

    Today it really sucks because it has intruded into my dear friend’s old age.  Other times it sucks because I see it affecting the young, and causing suffering.

    Other times I don’t give it a thought at all, all day, all week, all month.

    For that I am grateful today, even as I feel a bit sad.  I didn’t think I had it in me to post today, but as always, to write is a blessing to me.

    Thanks for reading.

     

    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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